Untitled - L`Appui pour les proches aidants
Transcription
Untitled - L`Appui pour les proches aidants
The realization of this Guide was made possible by the members of the Table de concertation des organismes communautaires, secteur personnes aînées de Sherbrooke, and by the generous financial support of the following organizations: L’APPUI Estrie, Martineau Communication and Printing, Health and social services agency, Table de concertation des organismes communautaires, secteur personnes aînées de Sherbooke. To produce this Guide, the committee gathered various tools developed in other areas. In order to integrate the inter-generational window we asked children to illustrate to us a person who helps another person. We especially wish to thank the consultation committee for senior citizens of St-François who authorized us to reproduce extracts of the Guide, ―To help without exhaustion‖ and the consultation committee for senior citizens of the Memphrémagog MRC for the ―Guide for people who help a loved one cope with loss of autonomy‖. In the segment, ―Resources‖, we used several references from the Guide, ―La Boussole‖ from the association of homecare providers of Montreal. Draft: Guide committee members, Local committee of community organisations of Sherbrooke- senior sector. You can obtain a copy of this document by consulting the Document management service of the CSSS-IUGS (819-780-2222). For a copy of the electronic version of this document, visit: www.reseaudamis.ca or www.csss-iugs.ca ISBN-13: 978-2-9814058-2-1 (Printed version) ISBN-13: 978-2-9814058-3-8 (PDF version) Legal deposit: Bibliothèque et Archives nationales du Québec, 2013 Legal deposit : Library and Archives Canada, 2013 All reproductions of this document, total or partial, is authorized with the condition that the reference be mentioned. THE MEMBERS OF THE COMMITTEE Lennoxville and District Community Aid Sylvie Gilbert-Fowlis Handi Apte Josée Fontaine La Rose des vents de l’Estrie Isabelle Desruisseaux Regroupement des aidantes et aidants naturels (RAAN) (or Réseau d’Amis) Danielle Maynard Société Alzheimer de l’Estrie Danielle Yergeau Drawings : Clohé Roy, 11 years old, Anne-Marie Dubreuil, 13 years old and Rick Evans, 8 years old Translation: Helen Johnston, Stevenson Writers Sherbrooke, Spring 2013 TABLE OF CONTENT INTRODUCTION 1 INFORMATION Evaluating my situation The pressures How are you doing? Taking care of oneself, what does that mean? Keep your eyes open! The caregiver’s bill of rights and freedoms Asking for help A healthy reaction to guilt Accepting help Family and Community Agreement 2 4 6 8 13 18 19 23 25 27 “RESOURCES” SECTION Home care services for seniors Entry point (CSSS-IUGS) Processing a request for home care services Home care program, CSSS-IUGS Prevention programs Users’ Committee Housing 31 33 35 35 37 39 40 “COMMUNITY RESOURCES” SECTION Housekeeping Food services Database of home care support workers Women’s issues Cancer support Advocacy Active listening and mental health services Housing Prevention of abuse Complaints: Services offering assistance when filing a complaint Respite, companion sitting Services and group support meetings for caregivers Palliative care (Assistance and accompaniment) Telephone support Transport, escort-transport Accessible transportation Substance abuse Home visits 41 41 41 42 42 43 43 44 44 44 44 45 47 48 48 48 48 48 OTHER COMMUNITY BASED SERVICES Adaptive clothing Rental or purchase of medical equipment and aids Leisure activities Fight against elder abuse Security and telephone surveillance Telephone Transport Emergency 49 49 49 50 51 51 51 51 PUBLIC AND GOVERNMENTAL SERVICES (Municipal, provincial, federal) Assistive devices 52 HOUSING Home Adaptation Assistance Programs Rent Assistance Programs Residences for seniors Alternative residences for persons with disabilities Assistance in locating a private residence 55 57 58 61 61 TRANSPORTATION Adapted transport Modes of transportation Fees Disabled parking permit Escort I.D. cards and parking permits Transport by ambulance 62 63 63 64 65 66 WORK LIFE BALANCE Absence due to familial reasons Short-term leave Long-term leave Compassionate care benefits 66 66 67 67 END OF LIFE Palliative care End of life Compassion care benefits The death of a loved one The funeral Leave due to death or to attend a funeral Individual and family assistance: Death Benefits The Quebec pension plan: Death Benefits 68 69 71 72 72 74 75 75 FINANCIAL ASSISTANCE Tax credits Federal tax credits Provincial tax credits Assistance in filling out tax forms Individual and family assistance (social assistance) 76 77 78 79 80 LEGAL INFORMATION Power of attorney Mandate Will 81 82 84 PROTECTIVE SUPERVISION Curatorship Tutorship Advisers for adults 85 87 88 CHOOSING A PRIVATE RESIDENCE 89 ACRONYMS 97 BIBLIOGRAPHY 99 NAMES AND TELEPHONE NUMBERS 100 INTRODUCTION The purpose of this guide is to provide useful information to assist caregivers in their role. The initial idea to develop this guide stems from discussions held by the Table de concertation des organismes secteur personnes aînées de Sherbrooke, which is made up of community organisations and CSSS professionals. This guide was developed based on the following observations: Caregivers tend to ignore their limits and to delay asking for help. This tendency can lead to burnout. Caregivers often lack information, so they know very little about the resources available to help them. This guide has been designed to help caregivers to: become aware of their role, and to develop the tools they need to meet their responsibilities as caregivers; learn about the existing resources and the solutions available to them to prevent burn out; encourage them to think about their commitment. The approach used throughout this guide emphasizes the rights of the caregiver to respond to his or her own needs and the choices that he or she has, that only he or she can make. This guide is only one tool amongst others. We invite you to refer to the "Resources" section of this guide if you need additional information. We would also like to hear your comments about this guide. You may do so by contacting the Regroupement des Aidantes et Aidants Naturels (819 562-2494) or the CSSS-IUGS (819 780-2222) and ask for the Elderly Services and Independent Living Department. In order to reduce text, the feminine is used without any intended discrimination. 1 EVALUATING MY SITUATION Caring for a Loved One Agreeing to share my time and energy to give regular help to someone who is sick or has lost independence is an act of great generosity. It also implies that I will have more to do and have less free time for myself. I have embarked on this helping relationship because of my emotional ties to the person in need, because I live with that person or am close to them, or because I am just the ―best― person to do it. I likely forgot to assess the impact this would have on my daily life, and to set a limit on the length of my commitment, the amount of time I would have available, and the kinds of tasks I can do. The support I am giving the person I help is increasingly taking up a lot of room in my life, sometimes all the room. Now I am faced with a dilemma: I no longer have time for myself, the other members of my family, or my friends and acquaintances. I am always busy and worried. Weariness gradually becomes permanent: I have aches and pains, trouble sleeping, digestive problems; I am irritable and feel depressed. It is possible to help without burning out. I can always adjust my degree of involvement, while still making sure that the person I help is suitably cared for. I have the means at hand. It is up to me to use them. Often a turn of events causes us to become a caregiver without knowing in advance what lies ahead. 2 Who is the person being helped? It is someone: in my family or circle of friends; who needs help, accompaniment, support or supervision on a regular basis; who would have difficulty staying at home without help. Who is the caregiver? Like many other people, I assumed this role without really having a choice. I am someone who can be counted on, is reliable, resourceful and available. I am: generally a woman (80% of the time); someone who lives with the person needing help, or who lives close by; someone who is emotionally ―close‖; most likely a member of the family: spouse or child (often the eldest child). Families provide 80% of the care and support to a person in loss of autonomy. Statistics show that approximately 25% of the Canadian population provide home care. In addition, it is estimated that 10% of Quebecers help someone who has a long-term incapacity. In Quebec, the majority of caregivers have been supporting the same person for at least 5 years, 1 out of 5 over 10 years. 3 THE PRESSURES Pressures imposed by others Generally speaking, it is assumed that helping a loved one is a family responsibility. There is often ―pressure‖ exerted on certain family members who then become the caregiver, and no one ever questions this. ―We can count on you. We have confidence in you. You are so much better at caring for him or her than we are.‖ ―You live together. We won't interfere in your business.‖ ―You started out taking care of him or her. I work, I have children. Well, you too, but you are closer.‖ ―Things are going well. You never ask us for help.‖ You should ask yourself a number of questions before becoming the main caregiver: Am I really the only one who is capable and available? Would I welcome help from people close to me, even if they do things differently than me? Do I have the physical and moral strength to take care of someone who is suffering a loss of independence and who is living at home? Will my employer allow me to have a flexible schedule so that I can take better care of the person in my care? To help you evaluate your situation, refer to the Family and Social Contract. 4 Self-imposed pressures Of the demands that weigh on me, the ones I force onto myself are the hardest to identify and question. Most of them are usually centred on moral values, that are just and valid, that guide my life as a whole. Others stem from religious beliefs, unfulfilled needs in the past or unresolved conflicts. ―It is my duty to take care of him or her: I owe him or her my existence.‖ ―I am the only one who can do this. I know all his or her needs, tastes, and habits.‖ ―I don't want to appear heartless.‖ ―When you love someone, you give your all.‖ ‖I promised to take care of him or her until the end.‖ If I keep going without a break, don’t I risk running out of energy? Can I be a caregiver if I am tired, impatient, irritable, and myself in need of help? Do I have to keep my promise at any price? At the price of my own health and well-being? Is this a contract for life? How can I reconcile my professional responsibilities, my duty to my children, and my role as a daily caregiver? 5 HOW ARE YOU DOING? This questionnaire is a tool to help you evaluate your workload. There are no right and wrong answers. Instructions Circle the number that corresponds to your feelings. 0= never 3= often 1= rarely 4= almost always 2= sometimes In these questions, the word relative refers to the person you are caring for. At what frequency do you: 1 Feel that your relative asks for more help than he or she really needs? 01234 2 Feel that because of the time you spend with your relative you don’t have enough time for yourself? 01234 3 Feel torn between caring for your relative and your other family or professional responsibilities? 01234 4 Feel embarrassed by the behaviour of your relative? 01234 5 Feel angry when you are in the presence of your relative? 01234 6 Feel that your relative interferes with your relationships with the other members of your family or your friends? 01234 7 Fear what the future holds for your relative? 01234 8 Feel that your relative is dependent on you? 01234 9 Feel stressed when you are with your relative? 01234 10 Feel that your health has deteriorated because of your involvement with your relative? 01234 11 Feel that you don’t have as much privacy as you would like because of your relative? 01234 6 12 Feel that your social life has deteriorated due to the fact that you take care of your relative? 01234 13 Feel uncomfortable having friends over because of your relative? 01234 14 Feel that your relative seems to expect that you will take care of him or her, as if you are the only one that he or she can count on? 01234 15 Feel that you don’t have sufficient income to take care of your relative, given your other expenses? 01234 16 Feel that you won’t be able to take care of your relative for much longer? 01234 17 Feel like you have lost control of your life since your relative became ill? 01234 18 Wish you could leave your relative’s care to someone else? 01234 19 Feel that you don’t know what to do for your relative? 01234 20 Feel that you should be doing more for your relative? 01234 21 Feel that you could do a better job caring for your relative? 01234 22 Finally, how often do you feel that caring for your relative is a burden? 01234 Interpretation of the results: 00 to 20 = little or no burden 21 to 40 = light to moderate burden 41 to 60 = moderate to severe burden 61 to 81 = severe burden This questionnaire shouldn’t be interpreted as being the only indicator of your emotional state. It is recommended that you consult a health professional. English translation of a French translation by Burden, Zarit, S.H., Reever, K. E., BachPeterson, J., "The burden interview", The gerontologist, 20:649-655, 1980. Health and Social Services Center- University Institute of Geriatrics of Sherbrooke, 1036, rue Belvédère Sud, Sherbrooke (Quebec) J1H 4C4 7 TAKING CARE OF ONESELF, WHAT DOES THAT MEAN? You are important to the person needing care. Taking care of this person is very demanding, and takes a lot of time and energy. You can be young and fit, and still find this very difficult. If you want to continue caring for this person, it is essential that you also take care of yourself. To maintain mental stability, you have to feel secure, loved and valued. Remain realistic and don't over estimate your capabilities! You must understand that taking care of someone requires a lot of time and energy. There are limits to what you can do. You have to decide what you feel are the most important things. What counts the most in your opinion – a walk with the person you are caring for, a little time for yourself, doing something that you have always enjoyed with friends, or perhaps having a clean and well-organized house? You alone can decide what is most important to you at that precise time. Besides making these choices, you have to also set definite limits. Certain people have trouble accepting the fact that they can't do everything. It isn't easy to say ―NO‖. To be realistic, you have to carefully analyse how much you can do. 8 Accept how you feel! When taking care of someone who has lost their independence, you will inevitably go through a full gamut of emotions. In the same day, you can go from feeling completely satisfied, angry, frustrated, guilty, happy, sad, loving, embarrassed, nervous, bitter, full of hope, and complete despair. All these emotions can be difficult to define and difficult to confront, but they are normal. Negative emotions you feel don't mean that you are incapable of providing good care. It simply means you are human. Tell yourself you are doing your best. Look at life positively! Your attitude can have a determining influence on the way that you feel. Look at life positively. Look at what the person you are caring for can do instead of looking at what he or she can't do. Enjoy life and try to create good times. The good times might occur less often but they can still happen. Take care of your physical health! Keeping yourself healthy is very important. Don't neglect your health. Eat well and exercise regularly. Find ways to relax. Make sure that you rest as much as you need. Get regular medical check-ups. All of these means will help you to deal with the stress and to continue to provide the help. 9 Look after yourself You need to have regular breaks every day. You have to allow time to do other things. Don't wait until you are at the end of your rope to think about this. Look after yourself and do things that you like to do. Besides giving you more energy to continue, the time you take for yourself will help you feel less alone. Keep your sense of humour This will help you overcome the difficult moments. It is not by maintaining humour in your daily life that you diminish the sincerity of your care giving. People who have lost their independence haven't lost their sense of humour. They too need to have some fun. In fact, it is more agreeable to take care of someone when you can joke and laugh together. Get help A lot of people find it difficult to ask for help, and to receive that help. Some feel that asking for help means failure. It is very important that you realize that taking care of someone who has lost his or her independence isn't an easy job. You most likely will need help with the upkeep of your home, or to provide some of the care. Decide what type of help you need, and talk to your family, or to someone close to you. Most individuals would really like to help you, but often, they just don't know how to go about doing it. You can also contact community organizations. For more information, consult the ―Resources‖ section. 10 Share your emotions and your feelings through different types of support Do you keep your problems to yourself? A lot of people do. It is very important to talk about your feelings with others, or to write them in a personal diary. The others could be your neighbours, friends, other members of your family, people in an organization you might belong to, or a support group. If caring for a loved one becomes emotionally overwhelming, then you should seek help from a health professional. The latter will help you to understand your situation, and show you how to deal with your feelings, while offering professional support. Support groups offer a lot of help. When you participate in one of these groups, you find yourself amongst others who know exactly what you are experiencing. The group can give you practical advice about the care you give as well as information about the various resources in your community that are available to help you. It is also an opportunity to help others, and to share your expertise. Spiritual questioning Taking care of someone with a loss of independence often leads us to question our values with respect to life and death. Look for answers by having discussions with your family, your friends, or by analysing your spiritual beliefs. 11 GENERAL ADVICE ON ADAPTING Accept the fact that you might need help. Talk regularly to your family, to your friends, or to health professionals. Set realistic goals. Set your limits and learn to say no to make sure these limits are respected. Eat well; get regular exercise and sufficient sleep. Keep your sense of humor. Find a support group in Sherbrooke by consulting the Resource section of this booklet. The future As soon as you start taking care of a person suffering a loss of independence, you should start planning the immediate future and consider what lies ahead. Invite the members of your family, and, if possible, the person needing help, to take part in this planning. Think about using respite services, even if it is only for a few hours a week. It is also important for you to realize that during the care giving period, your needs and your skills will change, as, most likely, will those of the person needing the help. It may happen that you will reach a point where it will be impossible for you to continue to offer care at home. This is when your loved one could need the specialized care offered by a health establishment. No one knows when and if this will happen, but it is important for you to prepare for this possibility. As the caregiver, you should not look upon this as a failure but as another stage in accepting help from outside resources. The health establishments are one of the resources at your disposal. You fulfill a very important role. The work you do is vital. Take care of yourself. 12 You are not alone. The fact that you ask for help isn’t a sign of weakness, nor is it considered failure. By using the support services at your disposal, you make your job easier. KEEP YOUR EYES OPEN Do you feel that you are being abused? When you consider caring for someone, and you know that person well, it is difficult to imagine that there could be any abuse in the relationship. Unfortunately, experience has proven that the risks are as great for the person receiving the care, as for the caregiver, regardless of what form of abuse is used. Abuse of power Controlling another person's comings and goings from the house, phone calls, correspondence, conversations, or how they use their time during the day, can become part of the daily routine of the caregiver or the person needing care. This way of living can stifle life, make it infantile, undermine good relationships, and change the atmosphere in the house. In order to achieve a relationship that is mutually respectful, you have to establish clear rules and limitations. Psychological abuse Psychological abuse between caregivers and the person requiring the care happens very inconspicuously. Frequent long conversations about insignificant health problems, complaints about boredom, hidden criticisms can slowly put stress on the relationship, however well-intentioned they are. Who hasn't felt harassment by hearing threats such as: ―If you don't listen to me, I'll put you in a home‖, or ―One morning you will find me dead, and then you will have to explain‖. There is also the feeling of abandonment, or loss of selfesteem that develops by feeling useless: ―I know that you are letting me die to get my money sooner.‖ Being aware of the possibility of such abusive behaviours arising can help you prevent them from happening. Physical Abuse Being constantly present and responding to the needs of a loved one can lead to increased fatigue. This, in turn, can lead to inappropriate gestures, disrespectful glances, physical violence, negligence etc. On the other hand, the person needing the help can also talk aggressively or make offensive gestures, or even act aggressively. 13 Sexual abuse Behaving in a sexual way towards the person requiring care without their full knowledge or consent. Financial Abuse Misusing the person requiring care’s money/ property or applying pressure to gain access to his/her assets. There are several ways in which someone may take advantage of someone else financially: Use personal information to gain access to finances and property Pressure the person to make changes to the will or power of attorney, or force the person into signing contracts or wills. Steal money or property Forge a signature on pension cheques and/or other legal documents Refuse to allow the person it have access to his/her money Neglect Knowingly refuse or unknowingly failing to meet the physical, social or psychological needs of the person requiring care. Violation of rights Refusing to recognize the basic rights of the person requiring help such as independence, participation, care, self-fulfillment and dignity. Ageism Age discrimination, stereotyping and social indifference. This form of violence is very subtle, affecting the dignity and identity of the elderly and may be seen as a violation of rights. Inspired by Seniors’ Community Notebook, Connecting seniors to their community and to each other (2009). Ministère de la Famille et des Aînés et la Fondation pour le bien vieillir. 14 Warning signs to look out for to avoid abuse The drawing on the side illustrates the vicious circle of guilt that can lead to different forms of abuse. The vicious circle is as follows: I take on a heavy load. The heavier it becomes, the more I feel aggressive. Since my aggressiveness is directed towards someone who is fragile or to someone that I feel owing to, I develop guilt. This guilt leads me to do more again, and to overprotect them, meaning I do even more than before. The cycle starts over again since the load has increased and I feel aggressive… The solutions As soon as the load becomes too heavy, look for help, for support from those around you, from the community, the CSSS-IUGS, or from community organizations. You could ask for help from a friend, a health professional, or a telephone help line to help you break the unhealthy relationship between you and the one you care for. These different types of abuse are subtle ways of dominating, of, unconsciously or not, taking over. It is important to realize this, and to find ways of dealing with it in order to eliminate the destructive tension. 15 Did you know that even a well-intentioned caregiver could behave inappropriately towards a family member with a loss of independence? This is usually due to increased responsibilities and workload. This short test is a personal tool that will help you assess your behavior and that of your loved one. Maybe you are the victim? Does it sometimes happen to you that... You feel obligated to do something against your will and/or do things that you don’t agree with? You find your family member’s behavior difficult to manage? You answer for your loved one because he or she is too slow? You rush your loved one because you are in a hurry? You think that you are not doing everything that you should be doing for your loved one? You speak about your loved one to another person as if they weren’t in the room, even when they are right there? You are tired, exhausted, and you can’t meet all of your loved one’s needs? You speak loudly or curtly, because you are tired and impatient? You criticize your loved one because of their disability? You pay your bills from your loved one’s financial resources since you feel that you are owed something? You threaten to put your loved one in a home if he or she doesn’t do what you are asking? 16 YES NO Does it happen to you sometimes that your loved one...YES NO Objects to you having visitors over, because it is too tiring for him or her? Complains more every time you talk about going out? Makes you feel incompetent when you are providing care? Refuses outside help that could lighten your load? Says you are selfish and ungrateful because you want to have a bit of time for yourself? Threatens to reduce his or her financial contribution if you don’t answer to all of his or her demands? Insults or humiliates you in front of others? We suggest that you answer these questions on a separate sheet of paper in order to be able to take the test again at a later date. If you have answered yes to one or more of these questions, it is possible that you need assistance. Consult the ―Resources‖ section of this guide for help. Inspired from the Caregiver and Care-Receiver Indicators of Abuse (IOA) and Dépistage de l’abus chez les aidants naturels (DACAN) (Reis-Nahmiash) by the Association estrienne pour l’information et la formation aux aînés (AEIFA) Lyne Lacroix, Coordinator 17 THE CAREGIVER'S BILL OF RIGHTS AND FREEDOMS I have the right to… take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative; seek help from others even though my relative might object. I recognize my limitations and my strengths; continue the activities that respond to my personal needs, that don't include the person I care for. I know I am doing all I can for this person, and I have the right to do something just for myself; be angry, to be depressed, to express other difficulties occasionally; reject all attempts by my relative to manipulate me, consciously or not, by guilt or by depression; cultivate reciprocal respect in this relationship be proud of what I am doing and to applaud the courage that it has sometimes taken to meet the needs of my relative; protect my individuality and my right to make a life for myself that will sustain me later, when my relative no longer needs me; expect and demand that strides are made in improving services to aid physically and mentally impaired persons, as well as for their caregivers. Source: unknown author, Today’s Caregiver, Miami, Florida 18 ASKING FOR HELP Preventing burn out requires an ability to define my needs, respect my limits, and have access to resources in the community. Asking for help starts with admitting that you need help. Defining my needs Like everyone else, I must, first of all, meet my basic needs: eating, sleeping, exercising, and taking care of myself. It is essential for maintaining my quality of life. If I neglect these areas, sooner or later, I will feel the effects on my health. I need to have activities that give me pleasure. As the caregiver I also need information: about the loss of independence of the person I care for and the probable evolution of his or her condition; about the ways to cope and to adjust as the situation changes; about the resources available and how to access them. 19 Respecting my limitations I probably didn't take the time, when I first started, to define the limits of my commitment towards the person that I am helping. However, it is never too late to do it. How many hours and how many times a week can I be present or help? For how many months or years? What level and what type of help am I able to offer: bathing, cutting nails, changing dressings, psychological support, supervision night and day, help with getting around? How often will I need breaks and vacations? Who will replace me? Can I say ―no‖ when someone expects something from me? What other areas of my life are important: the relationship with my spouse and my children, my job, having a social life? By not deciding my own limits, I decide to let others do it for me. It is my right to decide. 20 My reluctance as a caregiver For many reasons related to beliefs, promises, fear of being judged, the caregiver has a tendency to ask for help or to accept help only when all else fails. Why wait until you are at the breaking point? Say YES to help if you feel depressed, worn out, tired… Here are examples of incorrect reasoning that stop you from asking for help: ―It is only temporary; it is just a difficult time.‖ ―I'll do things differently. After I sleep a bit I will be all right.‖ ―I don't want things to be done in a different way.‖ ―Since the budget cuts services are overloaded. The government hasn't got the money to pay. There are others who surely need it more than me.‖ ―This is family business. They are going to ask me questions. I am going to have to tell my story once more. I don't like people poking into my business.‖ ―I am going to have to change my routine, my habits, to accommodate the availability and the schedule of the person who will be helping.‖ ―In any event, it is so minor that it isn't worth the effort to upset everything.‖ 21 The reluctance of the person who needs help It is already difficult to adjust to being less independent and to require help from someone else for many activities. The person in need of care accepts help more easily when it is someone close to him or her, and in whom he or she has confidence, and is at ease with. We often worry that the person needing help won't accept having several individuals sharing the tasks, even if they are family members. There is even greater reluctance when the helpers are outside resources. ―So that's it, you can't take care of me anymore. You might as well put me in a home.‖ ―I'll take care of myself.‖ ―I might as well die.‖ The person needing help wants the exclusive attention of the caregiver, and doesn’t listen to the needs expressed by caregivers. ―I don't want to deal with just anybody, I don't want strangers.‖ The reluctance of the person needing help isn't always expressed verbally. It can become evident by certain behaviours, gestures, and attitudes, or may even be expressed by tears. It becomes difficult for the caregiver, at these times, to avoid feeling guilty. When the person being helped refuses homecare, tell them that it is you that needs the help and not them. 22 A HEALTHY REACTION TO GUILT One of the most difficult emotions to master is guilt. Who hasn't ever felt guilty? Guilt occurs surreptitiously. Feeling guilty means feeling dissatisfaction with oneself, or judging one’s own behaviour as unacceptable, since it doesn't meet with one’s values or what one’s conscious dictates. There is a little voice in our head that tells us to be generous, courageous, devoted, patient, all of this unconditionally. We often feel guilty because we have been impatient, we become easily overwhelmed, or we want time for ourselves. Guilt is an inner burden that is useless, and that only increases the already heavy task of caring for someone. This feeling is normal, but we have to find a balance between our needs and those of the other person. It is very important that the caregiver unburdens himself or herself of this feeling of guilt to be able to feel good about himself or herself, and to feel good about the relationship he or she has with the person being cared for. “When we feel guilty, we dwell on it and this drains our energy and undermines our health!” 23 It is possible to gain the upper hand with respect to guilt, while still maintaining self-respect as well as respect for the other person. In order to do this, we suggest that you do a self-analysis to help you react in a healthy way to your guilt: To recognize that I have this feeling and to look at it closely. To define the behaviour that I do or forget to do, that gives rise to this guilt. To define the values or demands that lead to guilt. To clarify my position and react accordingly. Ask myself if this value is still valid, today, in my life. : Yes, this value is still valid to me in my life. If I am going to feel guilty every time I don’t meet a need, so that I can think of myself or respond to my needs, then I will have to find the best way to reconcile my thoughts and deeds, while all the while respecting this value. No, this value is no longer valid in my life. I will live the way I have decided, feeling good about myself, and bit-by-bit the guilt will go away. However, one has to understand that our conscience has developed over a long period of time and influences our choices in life, and so it won't change automatically without some distress. I am, above all, responsible to myself, sometimes towards others, for certain things and for a certain time. 24 ACCEPTING HELP From family and friends The first approach to organizing and sharing caregiving tasks is usually amongst family and close friends. I talk to the person needing help, and encourage him or her to do as much as possible for him or herself. I accept the help of my family and friends to respond to the multiple needs of the person needing help. By lightening the workload, I am less isolated and better able to respond to my needs, be they personal, family, professional or social. I request a family council meeting to work out a contract for care. I clearly describe my situation and establish my limits. I ask for help to equally distribute the duties according to a precisely laid out ―routine‖ that determines, in advance, the day and the hours for the care. The cost of various services (for example: companion sitting), should also be shared bathing and The first step is always the most difficult to take. 25 Outside resources Access to outside resources is available to everyone. As a citizen, I have access to a variety of services available in my community. Take the time to study the different solutions that are suggested, and to choose the best course. Of course, I will have to explain my needs, and talk about what I am experiencing. It is possible that following the assessment, I will be referred to a different service than the one I called upon. It is also possible that what will be offered to me will seem inadequate or will not seem to correspond to what I have asked for. Why not give it a try? There are a multitude of services available in the Sherbrooke area. I can easily contact any one of them. It is possible that my request will be transferred to another service that is more appropriate. However, I will have to give my consent before someone can make the referral. 26 FAMILY AND SOCIAL CONTRACT To Consider: Taking care of a loved one presenting a loss of autonomy means the performance of multiple tasks. This tool allows you to generate a portrait of the situation and become aware of the extent of the tasks and responsibilities. It seems important to us to promote the autonomy of the person being helped in allowing them to participate in the daily tasks, depending on their ability. Use a led pencil in order to make corrections along the way. 27 28 29 This is an adaptation of the family and social agreement from the “ENTOURAGE”. Regroupement des aidantes et aidants naturels de Montréal,and the form, « Who does what? A portrait of task division. Regroupement des proches de Bellechasse. Produced by the Table de concertation des organismes communautaires, secteur personnes aînées de Sherbrooke, 2013. 30 “RESOURCES” SECTION This section contains information about the resources available to you and to the person you are helping. The first part contains the following topics: homecare services offered by the Sherbrooke CSSS-IUGS, the day center, respite care services, and nursing home placement in a public institution. The second part deals with community services and finally public services and other governmental programs. HOMECARE SERVICES The Geriatric Institute (Institut Universitaire de gériatrie Sherbrooke) and the CLSC have joined together to provide Sherbrooke MRC with a new health establishment. It is called Centre de santé et de services sociaux-Institut Universitaire gériatrie de Sherbrooke (CSSS-IUGS). Day Centre services included in this new institution. de the the de are The CSSS-IUGS includes the following: Elderly Services and Independent Living Department Short term geriatric units Intensive functional rehabilitation unit Geriatric psychiatry CHSLD, intermediate resources, family-type resources, noninstitutional resources Day hospital services Day center Convalescence program As well as a research centre on geriatrics For more information on the services for seniors, contact the psychosocial reception desk at the CSSS-IUGS (819 780-2222) For more precise and updated information avec the services offered by the CSSS-IUGS, visit www.csss-iugs.ca 31 The programs offered by the home care department are offered to the following clientele: Seniors 65 ans older with temporary or permanent incapacities, due to physical, mental, or psychosocial problems, as well as services for their caregivers. These services are provided for persons living at home, or in a senior’s residence. The CSSS-IUGS works in collaboration with the community organisations, involved in supporting homecare, as you will see later on in the ―Resource‖ section. You will find a list of these resources and where to contact them at the end of this Guide. The word ―home‖ refers to the place of residence, whether it is permanent or temporary. This definition includes a house, an apartment, a senior’s residence or a private nursing home. This section provides a brief description of the home care services offered by the CSSS-IUGS. 32 ENTRY POINT TO THE CSSS-IUGS Info-Santé 811 A nurse will answer your questions regarding health problems, medication, or various treatments, etc. 24 hours a day 7 days a week. Psychosocial services For someone experiencing a loss of independence, psychosocial services are the point of entry into the health system. A social worker is available during normal working hours to answer any questions you may have. To access these services, contact the CSSS-IUGS (819 780-2222). PROCESSING A REQUEST Following a request, a health professional makes an appointment with you to evaluate the loss of independence of the senior in question. This evaluation is done using a form called Multi-clientele Autonomy Assessment. The results determine the individual’s profile of independence on a scale of 1-14. This is called the Profile-ISOSMAF. This profile determines which services will be required. Other factors, such as the support network, are also taken into account. Afterwards, a plan is drawn up to provide the services. 33 Processing a request Origin of the request: - An individual suffering a loss of independence - A caregiver Psychosocial reception Basic evaluation to determine admissibility Non admissible Directed to another community resource if necessary Admissible Referral to the Elderly Services and Independent Living Department Detailed evaluation of the needs (Multi-clientele Autonomy Assessment) -Organisation of the response to the needs Referral to a team for the continuation of services and for the reevaluation of the needs 34 Non admissible Directed to another community resource if necessary HOME CARE SERVICES FOR SENIORS CSSS-IUGS The CSSS-IUGS is pleased to present its home care services, available to the elderly suffering a loss of independence. This service is available to anyone in the Sherbrooke area, whether you live in your own home or in an assisted living centre, and who is incapacitated due to health reasons. For more information on the Elderly Services and Independent Living Department, contact the psychosocial reception of the CSSS-IUGS (819 780-2222) Home care services Reception, Evaluation, Information, Guidance, Referral and Follow-up Services A multidisciplinary team will respond to your needs. Psychosocial services Professional follow-up with a senior or a caregiver facing various difficulties while empowering the person in the exercise of their rights, in the accomplishment of their social roles, in their interpersonal relationships and in their social participation. Home Care Services Help with personnel hygiene, getting around, transfers in and out of bed and with eating. Nursing Services Follow-up services after an operation or a stay in hospital (dressings, blood sampling for testing, palliative care), supervision of general health. (7 days a week, 24 hours a day) CSSS-IUGS- “A team dedicated to oncology and palliative care Objective: T offer services and support to people afflicted by cancer or in palliative care. These services are offered by a multidisciplinary team according to needs of the person, the family, or the network. 35 Nutrition service Psychoeducation service Professional follow-up for people with certain behavioural adaptation difficulties Rehabilitation Services o Physiotherapy Treatments that strive to improve mobility, muscular strength, balance and walking, in order for the individual to obtain the maximum level of function. o Occupational Therapy Treatments that strive to maximise the level of function, or to maintain the actual capacities of an individual to perform daily living activities. o Inhalation Therapy Professional services for individuals having respiratory problems. Community Services: In addition, the CSSS-IUGS offers a Community Services program to respond to its mission of prevention and of local development. (Support to community organizations and the development of new resources). A CSSS-IUGS employee ensures the quality of the link with community organisations and a continuation of services. 36 Prevention program Prevention of falls (CSSS-IUGS) Goal: To maintain a person’s independence who is 65 and over and living at home, by reducing the risk of falling as well as the severity of the fall. After which, suggestions will be made in the following areas: o Nutrition o Medication o High blood pressure o Preventing falls o Walking and balance For direct access to this service, call the CSSS-IUGS (819 780-2222) Community program preventing falls Stand-up! Program (Programme P.I.E.D) For autonomous individuals over the age of 65 years, who are concerned about their balance. Three community organisations offer group activities (physical exercise and prevention sessions): Lennoxville and District Community Aid, Rayon de Soleil de l’Estrie and Sercovie. Flu Vaccination Clinic One of the prevention programs offered by the CSSS-IUGS is the clinic for flu vaccination The Day Centre Stimulating the genuine abilities of seniors in loss of autonomy at the Day Center enables participants to: o o o o maintain their abilities compensate for their permanent disabilities improve and maintain their physical health stimulate and maintain their cognitive and intellectual abilities 37 It also provides you with respite while the person you are caring for participates in the activities. Group activities are from Monday to Friday. Requests for admission to the Day Centre must be made through the CSSS-IUGS by contacting the reception or your case worker. Support Group for Individuals with Pulmonary Disease The Quebec Pulmonary Association, in collaboration with the CSSSIUGS, offers a support group for individuals with pulmonary problems, as well as for their entourage. The group meets every first Tuesday of the month. The objectives are to break the isolation, allow people to express their feelings, help with acceptance of their illness, and to develop ways of adapting to their new life style. Teaching Centre for Asthmatics (TCA) Teaching sessions are offered for asthmatics, on an individual basis or in groups. The objective is to improve their level of independence and their quality of life. COPD Network Teaching sessions and follow-up services are available for people suffering from Chronic Obstructive Pulmonary Disease who meet the admission criteria of the program. The objective is to reduce the number of hospitalisations and emergency room visits. Ask your doctor about this program. For more information, contact the psychosocial reception (819 780-2222). 38 CSSS-IUGS Users’ Committee The Users’ Committee was established following law 83, in 1986. This law required that the CSSS-IUGS form a committee of users for all services, and in addition, a committee of residents from each of its Pavilions. These committees act as guardians for the rights of users and residents. The principal function of these committees is: inform people of their rights and obligations promote the improvement of conditions for the quality of life and evaluate people’s degree of satisfaction regarding services obtained defend the rights and common interest of these persons or the rights of a person at their request on demand, support and assist a person in every step they take concerning a complaint For more information, you may contact the CSSS-IUGS (819 7802222) 39 Public housing Moving to a seniors’ residence takes planning! The decision to move to a seniors’ residence or to a nursing home is not easy to make. In order to help you be prepared in case you have to make this decision, the CSSS-IUGS can provide advice so that you make the right decision for your needs, and to help make the move easier. Alternative solutions to nursing home placement The CSSS-IUGS’ goal is to help people live at home as long as possible. When this is no longer feasible, there are alternatives available before permanent nursing home placement is required. Various solutions are available depending on the needs of the person suffering a loss of independence and their family. For example: the CSSS-IUGS can help the person obtain services in a private residence. Temporary residence or alternating residence in a nursing home, as well as respite services in the home are other methods available to support the caregivers, as alternatives to nursing home placement. For more information contact the CSSS-IUGS (819 7802222) Nursing home component of the CSSS-IUGS Below are the four nursing homes of the CSSS-IUGS: ARGYLL hospital and nursing home 375 rue Argyll YOUVILLE hospital and nursing home 1036 rue Belvédère Sud ST-JOSEPH nursing home 611 Boulevard Queen-Victoria ST-VINCENT nursing home 300 rue King Ouest Intermediate residences (RI) and non-institutional residences (RNI) The following residences are affiliated with the CSSS-IUGS: RI Résidence Haut-Bois 819 564-8782 RI Le Gîte du Bel Âge 819 562-0312 RI Résidence Ste-Famille 819 346-6625 RNI Résidence Soleil, Manoir Sherbrooke 819 822-1038 40 COMMUNITY ORGANISATIONS Housekeeping Coopérative de service à domicile de l’Estrie 819 823-0093 Help with bathing, housework, respite services, accompaniment, and preparation of meals. Free evaluation, reliable services, and confidential. Lower fees available due to government subsidies Food Services Collective kitchen Cuisine collective le blé d’or For anyone who likes to eat well. 819 820-1231 Food banks Le Samaritain Moisson Estrie 819 563-8457 819 562-5840 Meals on Wheels Lennoxville and District Community Aid Sercovie (cafeteria on the premise) Purée food also available Service d'entraide Bénévole de Brompton Community Meals Lennoxville and District Community Aid Rayon de soleil de l'Estrie Cuisine collective le blé d’or 819 821-4779 819 565-1066 819 846-3513 819 821-4779 819 565-5487 819 820-1231 Database of home care supports workers Handi-Apte Individuals with physical disabilities can refer to this databank of names of home care workers who offer daily living assistance services (ex: morning 41 819 562-8877 and evening routines; personal hygiene; housekeeping, meal preparation etc.) Woman's issues AFEAS –Estrie region Lennoxville and District Woman’s Centre Centre des femmes la Parolière Centre de Santé des femmes de l'Estrie 819 819 819 819 864-4186 564-6626 569-0140 564-7885 Cancer Support La Rose des vents de l’Estrie 819 823-9996 Psychological support, escort transport, friendly visits, respite care, workshops, support groups and home care services. Financial aid is available to help pay for medication or to provide other essential needs. Specific criteria must be met. Canadian Cancer Society Research, emotional support, financial and material aid, telephone information line, documentation (available in French and English) 819 562-8869 The Quebec Cancer Foundation 819 822-2125 Accommodation in the curative phase, documentation and telephone information service, complementary therapy (massage, art therapy, adapted physical activity, etc.). These services are not only offered to people in residences. Multidisciplinary team/ Oncology (CHUS) 819 346-1110 Evaluation of your needs by a multidisciplinary team (13333) Continuity of services from the time of diagnosis Direction to specific treatments at any time during the illness (Treatments, remissions, palliative care) Services provided by nurses, sex therapist, psychologists, social Workers, dieticians, palliative care doctors, pharmacists, and pastoral services. Liaison and consultation with community organizations. 42 Palliative Care Unit (CHUS) 819 346-1110 12 beds are available, welcoming patients (26400) with cancer in need of short-term hospitalization to control discomfort and pain. A team of professionals offer the services needed by the patient and their family. Advocacy Association québécoise de défense 819 829-2981 des droits des retraité(e)s et préretraité(e) (AQDR) For anyone 50 years and older. AQDR offers services and information dealing with various aspects of life for retirees or people preparing to retire. These include: revenue, health, lodging, home care, transportation, environmental issues, education, legal issues and financial fraud. Handi-Apte 819 562-8877 Promotes and defends collective and individual rights of persons with a physical disability. Among other services, it offers support through the procedure of filing a complaint due to living conditions. Centre d’assistance et d’accompagnement 819 823-2047 aux plaintes Estrie (CAAP) 1 877 SOS-CAAP/ The CAAP-Estrie is a community 1 877 767-2227 organization mandated to assist and support individuals who wish to submit a complaint of non-satisfaction about the services received or services that they should have received from an establishes Health and social services network. FADOQ 819 566-7748 Association des locataires de Sherbrooke Defending the rights of tenants 819 791-1541 Active Listening and Mental Health Services La Cordée and Réseau d’Amis Mental health and aging project Home visits for people 65 years and over Secours Amitié Telephone support line 24 hours a day. 43 819 565-1225 819 564-2323 Housing Association des locataires de Sherbrooke Defending the rights of tenants 819 791-1541 Prevention of Abuse Association estrienne pour l’information et 819 346-0679 la formation aux aînées et aînés (AEIFA-DIRA) Prevention of and intervention against abuse to the elderly. Conferences, training and interventions upon request. Program for the Prevention of Loss of Independence in the Elderly Prevention of falls For autonomous people 65 years and over who are concerned about their balance. Three community organisations offer group activities (exercises and prevention sessions) Sercovie, Rayon de soleil de l’Estrie, Lennoxville & District Community Aid. Complaints: Service offering assistance when filing a complaints with the Health and Social Service Network Centre d’assistance et d’accompagnement 819 823-2047 aux plaintes Estrie (CAAP) 1 877 SOS-CAAP/ The CAAP-Estrie is a community 1 877 767-2227 organization mandated to assist and support individuals who wish to submit a complaint of non-satisfaction about the services received or services that they should have received from an establishes Health and social services network. Respite, Companion sitting (watching over the person in need or providing stimulation at home) Baluchon Alzheimer 514 762-2667 Are you taking care of someone with Alzheimer's at home? Respite services in your own home are available for periods of 4 or 14 consecutive days. Fixed rates. 44 Coopérative de services à domicile de l'Estrie Hygiene care, housekeeping, respite, monitoring, escort, meal preparation, free evaluation. Reliable and confidential services. Reasonable rates thanks to government financial assistance. 819 823-0093 La Rose des vents de l’Estrie 819 823-9996 Our services are available to person’s whose life expectancy is less than a year, regardless of their illness, to remain at home until death. The following services are available: information and referral, support by a psychologist, escort transport, friendly visits, support groups , and workshops. Respite services are available at home for individuals at the end of their life, and are offered by volunteers. The list of individuals who provide occasional respite services is available upon request. Financial aid is available to help pay for medication or to provide other essential needs. Specific criteria must be met. Société Alzheimer de l’Estrie 819 821-5127 Services offered: Support for individuals with Alzheimer’s disease and their families. Respite: the Stimulating Activities in the Home Program (PASAD), periods of 3h once a week. Other services: personalised individual and family support, help with problem solving (learning how to relax, how to communicate with the individual with Alzheimer’s disease, etc.), support groups, telephone support, documentation centre, information conferences, and information bulletins. Services and group support meetings for caregivers Lennoxville and District Community Aid 819 821-4779 Group meetings for caregivers, information, Individual and group support, and mutual aid, bilingual services and a bank of autonomous workers available for respite. 45 Regroupement des aidantes et aidants naturels 819 562-2494 (RAAN) Meet for coffee the last Wednesday of every month, support group to prevent exhaustion and breakfast meeting. Information, resources and support. individual meetings at the office or at home. List of sitters available upon request for occasional respite (autonomous workers) ACTE Association des accidentés cérébro-vasculaire et traumatisés crâniens de l'Estrie Referral service, information, conferences, leisure activities, and a support group for people suffering from cranial trauma or strokes. 819 821-2799 APPAMME – Association des proches de 819 563-1363 personnes atteintes de maladie mentale de l’Estrie Information, moral support, monthly information and training meetings, support groups. Atelier téléphonique Réseau Entre-Aidants 1 866 396-2433 L’APPUI Estrie Ligne Info-Aidant (L’APPUI) Professional help-line, support and referrals adapted for seniors’ caregivers to address their needs. For more information visit their website: www.lappui.org/estrie 819 791-7771 819 791-7772 1 855 852-7796 Société Alzheimer de l’Estrie 819 821-5127 Services offered: Support for individuals with Alzheimer’s disease and their families. Respite: the Stimulating Activities in the Home Program (PASAD), periods of 3h once a week. Other services: personalised individual and family support, help with problem solving (learning how to relax, how to communicate with the individual with Alzheimer’s disease, etc.), support groups, telephone support, documentation centre, information conferences, and information bulletins. 46 Palliative Care (assistance, accompaniment…) Maison Aube-Lumière Objectives: To offer services to person’s with cancer in the palliative phase, during their last days of life. To offer support to the families. Services: Respite, temporary accommodation in crisis situations, hospice services, medical and nursing services, complementary services by volunteers, grief support, pastoral services. 819 821-3120 Rose des vents de l’Estrie 819 823-9996 Services available: Support, information and referrals, active listening and relational support assistance by a psychologist. Volunteers offer friendly visits. Support groups ―Living better with cancer‖ and support groups for dealing with grief. Respite services, for periods of 4 hours, are available at home. CSSS-IUGS- “A team dedicated to oncology and palliative care Objective: T offer services and support to people afflicted by cancer or in palliative care. These services are offered by a multidisciplinary team according to needs of the person, the family, or the network. 819 780-2222 Palliative care unit (CHUS) 819 346-1110 Twelve beds are available for individuals (26400) suffering from cancer and needing short-term hospitalisation to control the pain and discomfort. A team of health professionals will respond to the individual’s needs and those of their family. 47 Telephone Support Lennoxville and District Community Aid Le Service d’entraide bénévole de Brompton Réseau d’Amis Société Alzheimer de l'Estrie 819 821-4779 819 846-3513 819 562-2494 819 821-5127 Transportation, Escort-Transportation Lennoxville and District Community Aid Handi-Apte La Rose des vents de l’Estrie Réseau d’Amis Le Service d’entraide bénévole de Brompton 819 821-4779 819 562-8877 819 823-9996 819 562-2494 819 846-3513 Adapted transport Société de transport de Sherbrooke (STS) 819 564-2687 Regroupement des usagers du transport adapté du Sherbrooke Métropolitain (R.U.T.A.S.M.) 819 562-3311 Substance abuse ÉLIXIR or l’assuétude d’Ève 819 562-5771 Offers the S.E.V.E Program (information and mutual support to ensure an enlightened aging process) Woman 50 years and older. Programs for the prevention of alcohol, cigarette, medication and pathological gaming abuse. ―S'affirmer pour mieux vivre" and "Quête de sens". Home visits Lennoxville and District Community Aid Handi-Apte La Rose des vents de l’Estrie Le Service d’entraide bénévole de Brompton Les Petits frères (people 75 and older) Réseau d’Amis 48 819 821-4779 819 562-8877 819 823-9996 819 846-3515 819 821-4411 819 562-2494 OTHER COMMUNITY BASED RESOURCES Adaptive clothing Aisance Mode Plus Création Confort 819 562-9463 1 800 394-1513 Rental or purchase of medical equipment and aids Oxybec Ortho-dépôt Ortho-Fab Eureka Solutions (vehicle adaptation) Centre de réadaptation Estrie Orthèse-Prothèse Rive-Sud Inc. 819 566-8711 819 565-4102 819 566-5551 819 562-2555 819 820-2734 819 564-1450 Leisure Activities Université du troisième 819 821-7630 âge (UTA Sherbrooke) (cultural and educational activities) (FADOQ) Mouvement 819 566-7748 des aînés du Québec Région Estrie Sercovie « Le centre 819 565-1066 des Activités des 50 ans et plus», café « Le bel âge », afternoon get-together, PAS program. 49 Vie-active (regional resource: Sercovie) 819 565-1066 Loisirs Fleuri-Est 819 821-5791 Sherbrooke Loisirs Action 819 821-5780 Centre communautaire de loisirs Sherbrooke Inc 819 821-5601 Carrefour accès-loisir 819 821-1995 Bibliothèque municipale Éva-Senécal 819 821-5860 Bibliothèque Lennoxville Library 819 562-4949 Handi-Apte (group activities) 819 562-8877 Centre des femmes la Parolière 819 569-0140 (workshops, group activities) Prevention of abuse Regional organizations CAVAC- Centre d’aide aux victimes d’actes criminels de l’Estrie FADOQ Estrie (mouvement des aînés du Québec) 819 820-2822 819 566-7748 Public organizations Commission des droits de la personne et de la jeunesse Public curator 819 820-3855 819 820-3559 Local organizations CSSS-IUGS AEIFA DIRA (against abuse) AQDR (advocacy) Réseau d’Amis (support to caregivers) Lennoxville and District Community Aid L’Escale (Residential shelter) Centre d'aide et de lutte contre les agressions à caractères sexuel de l’Estrie (CALACS) 819 780-2222 819 346-0679 819 829-2981 819 562-2494 819 821-4779 819 569-3611 819-563-9999 Emergency services Info-Abus Service de police Sherbrooke Sûreté du Québec Ligne info-aidant 1 888 489-2287 819 821-5555 819 310-4141 1 855 852-7784 50 Security and Telephone Surveillance Police services / community security division 819 822-6080 (prevention – P.A.I.R) Lifeline 1 866 784-1992 Télé-sécur protection 819-563-3333 Telephone BELL Canada Service for hearing impaired individuals 819 310-BELL (2355) Transport Taxi-Sherbrooke 819 562-4717 Emergency Emergency Info-santé 911 811 Ambulance de l’Estrie Police Fire Poison center Urgence détresse 819 569-5559 819 821-5555 819 821-5517 1-800-463-5060 819 780-2222 Centre hospitalier universitaire de Sherbrooke - CHUS - Hôpital Fleurimont - CHUS - Hôpital Hôtel-Dieu 51 819 346-1110 819 346-1110 PUBLIC AND GOVERNMENTAL SERVICES (MUNICIPAL, PROVINCIAL, FEDERAL) Assistive Devices Without the use of assistive devices, it is sometimes quite difficult to help a loved one perform daily living activities. This type of assistance includes medical supplies, equipment and devices that allow an individual to stay in their home. This support not only provides functional autonomy for the individual but also provides them with great comfort. Finally, it increases the possibility of a safe living environment for not only the individual but also their family. These devices are aids that correct a deficiency, compensate for functional limitations or adapt the environment for the individual. The Politique de soutien à domicile (2003) of the ministère de la Santé et des Services sociaux, states that ―the process for providing assistive devices for someone living at home must be the same as for those who are hospitalized or in a long-term care facility.― It is the local CSSS-IUGS who evaluates and provides advice on all assistive device matters. 52 Assistive Devices Chart List of Ministerial Programs for Assistive Devices Program Authority Brief description of available devices Régie de l’assurance-maladie (1 800 561-9749) Visual Aids Centre de réadaptation de l’Estrie Reading and writing aids (televisions, lenses and optical systems) and for mobility (white canes, obstacle detectors, etc.) (819 346-8411) Ocular prosthesis Régie de l’assurance-maladie (514 864-3411) Replacement of artificial eye(s) Régie de l’assurance-maladie (1 800 561-9749) Hearing aids Centre de réadaptation de l’Estrie Hearing aid, assistive hearing device (visual signalling device alarm clock, telephone aids, FM system teletypewriters, etc.) (819 346-8411) Cochlear implants CHUQ (Hôtel-Dieu de Québec) (418 525-4444) Hôpital Marie-Enfant Communication support (514 374-1710) www.hsj.qc.ca/crme Services for laryngectomees External breast forms CHUM (Hôpital Notre-Dame) (514 890-8000) Régie de l’assurance-maladie (1 800 561-9749) Costs associated with the placement of a cochlear implant or the vocal processor worn on a belt. For those individuals where regular hearing aids do not apply. Verbal and non-verbal communication aids; writing support, telephone aid and daily living aid for those individuals with more than just hearing loss. Electro larynx, speaking valve and accessories. The external breast form program is available to those individuals having undergone a mastectomy or having been diagnosed with aplasia. Ventilation Therapy CSSS-IUGS (819 780-2222) Ventilation assistance using volume reading device (variable positive pressure), with positive airway pressure systems for both inhalation and exhalation (BIPAP). Pacemaker ventilator. Home Oxygen Program CSSS-IUGS (819 780-2222) Oxygen concentrator and accessories. Cylinders, regulators, and accessories. CPAP, etc, for chronic pulmonary diseases. Régie de l’assurance-maladie (1 800 561-9749) Financial package for purchase of bags, adaptors, etc. for anyone having had a permanent colostomy, ileostomy or urostomy. Permanent Ostomy 53 List of Ministerial Programs for Assistive Devices Program Authority Enteral feeding CSSS-IUGS (819 780-2222) Elimination Aids CSSS-IUGS (819 780-2222) Régie de l’assurance-maladie (1 800 561-9749) Motricity Aids Walkers Orthotic Shoes Guide Dogs Centre de Réadaptation de l’Estrie (819 346-8411) CSSS-IUGS (819 780-2222) Centre de Réadaptation de l’Estrie (819 346-8411) Régie de l’assurance-maladie (1 800 561-9749) Fondation MIRA (450 795-3725) www.mira.ca Brief description of available devices Feeding pumps, tubes, tubes for gastrogavage, irrigation kits, small button, etc. Financial aid for the purchase of incontinence undergarments, for urinary drainage, urinary or intestinal irrigation or elimination, for tracheostomy and ostomies. Upper and lower limb orthotics or prostheses, trunk orthotics, walking aids, locomotor aids, (wheelchair) standing aids, posture aids, etc. Allocation of walkers to person who’s ability to live an active life is impeded by a significant mobility impairment. This program is exclusively for outside walkers. Shoe modification for severe walking disability Costs associated with the purchase and upkeep of a guide dog for the blind. Centre de Réadaptation de l’Estrie (819 346-8411) Technical aids for daily and domestic activities Tricycles and customized bicycles Three-wheeled and four-wheeled scooters CSSS-IUGS (819 780-2222) Institut de réadaptation et de déficience physique de Québec (418 529-9141) Institut de réadaptation et de déficience physique de Québec (418 529-9141) 54 Devices to adapt the bedroom, the bathroom and the kitchen (utensils, transfer bench, person lifter, personal hygiene aids, etc.) Customization of bicycles and tricycles for physically or mentally disabled youth up to age 18. Three-wheeled and four-wheeled scooters and walkers for those individuals with a severe walking disability over a 30 meter distance HOUSING When living with a disability or living with someone who has a disability, living in a place that corresponds to our needs is essential to maintaining independence. In fact, not being able to easily get around or to go up or down the stairs adds an extra burden. We have to increase the help we offer our family member for certain activities. As is mentioned in the Enquête québécoise sur les limitations d’activités (2000), housing is a basic component of living, and the condition in which citizens live is an indicator of the quality of life of a society. There are some government programs that assist in paying the costs associated with adapting a home or apartment, that provide financial aid for lower income individuals, that offer legal aid for tenants with a disability. Assistance program for adapting one’s residence The CSSS-IUGS is responsible for evaluating and recommending how to adapt one’s home. In Quebec, there are two major programs that provide financial assistance to adapt one’s home. Residential Adaptation Assistance Program (for persons with a handicap) The program is jointly administered by the City of Sherbrooke (819 821-5928) and the Société d’habitation du Québec (SHQ) (1 800 463-4315). This program helps persons with disabilities make their home accessible and adapted to their special needs by covering the costs associated with these changes. Work covered includes modifying entrances to allow for easy entry and exit; and renovations to the interior to ensure accessibility within the different rooms, such as adapting the kitchen, the bathroom, enlarging doorways, installing an exterior ramp. Financial Assistance Assistance can attain $16,000 for a homeowner, $8,000 for a tenant and up to $4,000 for a boarder. Moving Up to $5,750 of moving and installation costs can be covered through this program. This is only possible if the prior mentioned costs combined with the costs associated with adapting the new residence, are less than the costs associated with adapting the current dwelling. 55 The process The building’s owner must submit the residential adaptation request by completing the form ―Request for Provisional Aid―. The funding request must then be sent in along with the CSSS-IUGS or Centre de réadaptation’s occupational therapist’s report. Home Adaptation for Senior’s Independence Program (HASI) The Société d’habitation du Québec administers the program. For information contact the City of Sherbrooke (819 821-5928). Promoting staying at home, the program is for persons 65 years and older who are having difficulty performing certain daily activities, such as going in or out of one’s home, getting around inside, or not being able to fully use the kitchen, the bathroom or the storage areas. The financial assistance must be used for minor work done to adapt one’s home in order to continue to live in it safely. Costs to be reimbursed include the purchase and installation of: o A hand railing along a hallway or stairwell; o A safety bar along the bathtub; o Faucets and handles; o Switches or plugs in easily accessible areas. Eligibility criteria The maximum income varies depending on the number of persons in the household, the municipality and the household income. For ex: a single person’s annual income must be less than $18,000. A group of two or more people are also eligible based on their income. Financial assistance It can reach up to $3,500 if a contractor accredited by the Régie du bâtiment does the work. 56 Rent Assistance Programs Low Cost Housing Low Cost Housing is designed for low-income individuals and families. The cost of renting equals 25% of one’s income. Many low cost housing units where services are offered are reserved for seniors. Some units are wheelchair accessible and some have been adapted. The process A request must be made to the Office municipal d’habitation de Sherbrooke OMHS at (819 566-7868) An evaluation will be made based on the following criteria: income, actual housing conditions, the percentage of income being attributed to housing and the amount of assets owned. Cooperative Housing Many housing cooperatives offer units to low-to-modest income households. In order to rent a unit, one must become a member and participate in the management of the cooperative. For information: Fédération des coopératives d’habitation de l’Estrie (819 566-6303). Shelter Allowance Program This program is administered by the Société d’habitation du Québec (1 800 463-4315) and the ministère du Revenu du Québec (819 563-3034). It is for individuals, including those 55 and over, whose housing costs or rent exceeds 30% of their total annual revenues. Owners, renters and boarders are eligible for this program. Factors taken into account when calculating the amount allocated includes the number of persons in the household, the total revenue and the cost of lodging. 57 The Shelter Allowance Program provides financial assistance to individuals or families who have to spend more than 30% of their total income on housing. Not eligible for this program are: o o o Individuals, couples or families living in subsidized housing, a hospital centre or a subsidized community care centre; Those receiving benefit from the Rent Assistance Program or other such programs; Individuals, or their spouse, who have liquid or other assets with a market value of more than $50,000 (excluding the value of the home, land, furniture and car). Note: income is from the fiscal year prior to the year the request is being made in. The maximum financial assistance is $80 a month. Community Housing Community housing projects sponsored by the Société d’habitation du Québec (1 800 463-4315) are geared to low-income households, to seniors with slight handicaps or to individuals with special housing needs. To find out about local community housing projects, contact your CSSS-IUGS. Residences for Seniors Definition: Residential apartment buildings where rooms or apartments are offered to rent-paying senior citizens, and may include a variety of services, primarily related to security, domestic and social aid with the exception of a building maintained by an establishment or a local residence, where services are offered by an ―intermediate‖ or ―family type resource‖. (article 346.0.1 the law governing health and social services) All senior citizen residences regardless of its type must obtain an identification certificate from the Health and Social Services AgencyEstrie. The services offered vary from residence to residence. Some accommodate nine individuals or less, while others can accommodate more than one hundred. Older persons living in seniors’ residences who are still independent or in loss of autonomy have access to homecare services offered by the CSSS-IUGS. 58 Registering with the Agence de la santé et des services sociaux de l’Estrie In order to identify the seniors’ residences within its territory, the Health and social services Agency-Estrie must develop and update a list of these residences. Our rights Private residence owners must respect the Civil Code laws with respect to housing. They must also follow appropriate provincial and municipal health and safety regulations. As with any other type of housing, the same lease agreement regulations apply to private residences for seniors. Supplementary regulations apply should the residence owner offer additional services to a resident. Therefore, if a lessor provides services or adapts the unit then an annex describing these services or additions must be included with the lease (for ex: support bars, laundry service, housekeeping services). The cost of these services as well as the procedure to file a complaint with the Régie de logement must also be explained. If paying for these services by pre-authorized payment (the 23% tax credit), we recommend that you verify the amount debited on your monthly bank statement to ensure it is the correct amount, and that you have in fact received the services you have paid for. For information : o Régie du logement 1 800 683-2245 o Association des locataires de Sherbrooke 819 791-1541 o Association québécoise de défense des 819 829-2981 droits des retraité(e)s et préretraité(e)s (AQDR) section-Sherbrooke Rent supplement The Rent Supplement Program helps low-income households to live in private-sector rental dwellings or dwellings belonging to housing cooperatives or non-profit organizations, and to pay a rent similar to that for low-rental housing (25% of their income). For more information on this program, contact la Société d’Habitation du Québec (1 800 463-4315). To benefit from the Rent Supplement Program, communicate with l’Office municipale d’habitation de Sherbrooke (819 566-7868). 59 Emergency Repair Program The emergency Repair Program offers financial assistance for lowincome owner-occupiers who live in rural areas and must carry out urgent work on their homes to correct major defects that pose an immediate threat to the health or safety of the home’s occupants. The financial assistance covers 100% of the recognized admissible costs, up to a maximum of $6000, $ 9000, or $11 000, depending on your geographical location. Work is admissible if its purpose is to make urgent repairs to correct major defects affecting at least one of the following elements: the structure, the electric supply, the heating system, the plumbing system, the wood frame and fire safety aspects. For the eligibility criteria as well as any other information on the Emergency Repair Program, communicate with the Société d’habitation du Québec (1 800 463-4315) Residential Adaptation Assistance Program The Residential Adaptation Assistance Program is designed to help people with disabilities to perform their everyday activities and remain in their homes for longer. It offers financial assistance to homeowners, covering admissible work carried out to meet the needs of a disabled person. Financial assistance may be as much as $16, 000 per eligible person. Additional amounts may be allocated based on certain conditions. All people with disabilities whose limitations affect their everyday activities are eligible for assistance, provided: o o they submit a report from an occupational therapist, demonstrating that their impairment is significant and persistent, and that the disability requires alterations to their home they are not eligible for residential adaptation assistance under the insurance plans offered by the SAAQ or the CSST. Work is admissible if its purpose is to alter or adapt a disabled person’s dwelling so that he or she is able to enter, leave and have independent access to the rooms and everyday utilities and it offers a simple and economic solution. For more information on this program, contact the Société d’habitation du Québec (1 800 463-4315). 60 Alternative residences for persons with disabilities The services offered The Alternative Residences Program is offered by the Centre de réadaptation de l’Estrie (819 346-8411 ext. 43304). It is a program for individuals with a severe physical disability, (motor, neurological sensory, language or speech). Each unit offers specialized services or residential care. The alternative residential program offers a variety of residential resources with each one having its own features. A team of professionals study each request and guides them to the appropriate residences. This team of professionals come from the following domains: social work, special care counselling and nursing care. The Termination of a Lease For more information concerning the termination of a lease, refer to the ―lease‖ section of the ―Knowing how to choose a private residence with services‖ in this document. You may contact : o Régie du logement 1 800 683-2245 o Association des locataires de Sherbrooke 819 823-9135 o Association québécoise de défense des 819 829-2981 droits des retraité(e)s et préretraité(e)s (AQDR) section-Sherbrooke Assistance in locating a private residence A firm can help you and your family locate a residence depending on your finances, your tastes and criteria. Services offered include accompaniment during selection visits and follow-up after selection to ensure everything is suitable. Agence d’hébergement Doré (Choosing a lifestyle in a private residence) 819 571-8289 For more information, refer to the ―Knowing how to choose a private residence with services‖ section. 61 TRANSPORTATION Our daily living needs determine how much we need to get around. For a loved one with a disability, mobility may depend on the state of their health, but can also depend on social obstacles. So, sometimes, we have to pick up the slack, which can become laborious. A person’s needs depend on their level of independence and their health, as well as variables such as age, gender and socio-economic status. The needs can be met through formal channels (services that are available and accessible) or through informal channels (family and friends). When referring to transportation, we are referring to available services to assist persons with disabilities, such as adapting vehicles, accessible public transportation and escort services, etc. Accessible Public Transit The Société de transport de Sherbrooke’s (STS) (819 564-2687) accessible public transit is available to anyone, whatever their age, with functional limitations that inhibit them from using regular transit buses. In order to benefit from this service, one must be a resident of Sherbrooke, and complete a request form that must also be signed by a: o physician o occupational therapist, physiotherapist o cardiologist, lung specialist, neurologist o specialist in readaptation o psychologist o psychiatrist o any other professional from the health network or school system 62 An admissions committee reviews requests and renders a decision approximately 14 days after receipt of the request. One can always telephone to find out what decision was taken. In case of refusal, a new request can be submitted by filling out a more detailed form that must also be countersigned by a physician. Once approved to receive this service, the STS will send the individual an identification card and a registered file number. One must pay by way of token, money or by showing the monthly pass at the time of each trip. To reserve an adapted transport, communicate with la Société de Transport de Sherbrooke (819 566-1848) at least 24h before the time of the requested transport. Modes of transportation Specially adapted minibuses and taxis are the vehicles used by the accessible transit service. Fares The fare is the same as the cost for a regular transit trip. In order to benefit from reduced rates offered to students and senior citizens, the passenger must show the ID card issued by the STS. o Children under the age of five and their mandatory supervisor need not pay. o o Disabled Parking Permit 63 The Société de l’assurance automobile du Québec (SAAQ) (1 800 361-7620) issues a parking permit to people with handicaps in order to be able to park in the designated parking spaces. The parking permit must be suspended from the inside rear view mirror. To be eligible to receive this permit, a person with disabilities must meet these three conditions: o Be a "handicapped person" within the definition of the Act to assist a person with a handicap in exercising their rights, that is: a person who is limited in the performance of normal activities and who is suffering, significantly and permanently, from a physical or mental deficiency or who regularly uses a prosthesis or an orthopaedic device or any other means of alleviating his/her handicap. o Have been handicapped for at least six months with respect to covering short distances, (less than 50 metres). o Provides an evaluation completed by an authorized professional: a specialized educator, occupational therapist, a nurse, a doctor, an optometrist, physiotherapist or a psychologist. It is recommended that the health professional best suited to describe the current situation with regards to the limitations for short distance travel be the one to complete the evaluation. Costs associated with the completion of the report are not reimbursed by the SAAQ. The cost of the permit is $15 and is valid for a 5 to 6 year period. 64 Escort I.D. cards and parking permits The City of Sherbrooke issues escort I.D. cards for someone escorting a person with a disability. This service assists persons with disabilities by not having to pay an entry fee for their escort when their presence is required. Transportation by ambulance Travel by ambulance is free for person 65 years of age and over and, under certain circumstances, for employment insurance benefit recipients (that is, social assistance). The following travel is free: From a private residence or a public place in Quebec to the closest health establishment within the Réseau du ministère de la Santé et des Services sociaux; From a medical facility to one’s home after having been released from hospital. In order for the costs to be borne by the medical facility, the doctor receiving the person to the facility or discharging the person from hospital must confirm that the person’s health warrants transportation by ambulance. 65 WORK/LIFE BALANCE Whether we are voluntarily taking care of our parent, adult child, spouse or even a friend or it is by duty, many of us have to juggle these responsibilities with those of our professional life. In fact, with the ageing population, the deinstitutionalization of the health and social services sector, the shift to ambulatory care, as well as the development of home palliative care, taking on the double role of wage earner and caregiver will become increasingly common. Absence Due to Familial Reasons The Labour Standards Act regulates employer-employee relations. Included are norms on a worker’s absence from work for family commitments, and the employee’s recourse if not granted. A certain number of paid and non-paid days due to family reasons are permitted. Short-term Leave An employee can take up to 10 non-paid days off per year due to health reasons of a spouse, father, mother, a sibling or a grandparent. This time off need not be taken all at once. Even a day may be divided up if the employer agrees. The employee must inform the employer as soon as possible of his or her intention, and take all reasonable measures to limit the length of time off. 66 Long-term Leave An employee, having 3 months of uninterrupted service, can take off up to 12 weeks within a 12 month period in order to take care of a spouse, father, mother, sibling or grandparent who has a serious illness or has been in a serious accident. The employee must inform the employer as soon as possible, and if requested, provide the appropriate proof. For information : Commission des normes du travail ( 819-821-3441) ou (1 800 265-1414) (information services) Compassionate Care Benefits A worker may receive, under certain conditions, employment insurance benefits, or compassionate care benefits. 67 END OF LIFE The loss of a loved one is difficult. One can expect to go through many stages of grief: denial, anger, depression, etc. Even emotions that were gone can resurface. It is normal to get some support through the process. Palliative Care Health Canada defines palliative care as ―a special kind of health care for individuals and families who are living with a life-threatening illness, usually at an advanced stage. The goal of palliative care is to provide the best quality of life for the critically or terminally ill by ensuring their comfort and dignity.‖ The World Health Organization (WHO) adds that these services must also be available to the family members during their grieving period. Palliative Care in Sherbrooke Some of the goals of palliative care are to: o Manage pain and other symptoms; o Integrate the psychological and spiritual aspects of the care; o Offer a support system so that the individual can live as actively as possible up to the time of death; o Offer a support system to the family members during the illness and through the period of bereavement. Administrative ratios determine the reasonable time frame for dying in a hospital, a long-term care facility or a hospice. For example, if diagnosis is: o from 3 to 6 months, then the person will be directed to a residential and long-term care centre (centre d’hébergement et de soins de longue durée (CHSLD); o within one month, the person can be directed towards a residential and long-term care centre (CHSLD) o less than 2 weeks, the person will be directed to a hospital. 68 End of life in the hospital In palliative care units, the care provided is based on the individual’s needs and those of the family. All that can be done will be to alleviate the pain and suffering, and lessen the discomforts. Personal choices and wishes will be respected. The CHUS has a palliative care unit. Your doctor or the CSSS-IUGS will be able to provide you with the conditions to be admitted to the unit. End of life in a CHSLD In accordance with Ministry directives, when a person is dying, everything must be done so that the person may do so in dignity, with respect and comfort, and in concert with family members, taking into consideration the person’s beliefs, faith, culture and choices. The resident is at the centre of all actions taken and the individual’s quality of life is primordial. End of life in a residence La Maison Aube-Lumière 819-821-3120 Accommodate people who are seriously ill with cancer so they can benefit from a rest break of up to 21 days per year or to come and live out their last few weeks of life. End of life at home CSSS-IUGS 819-780-2222 Co-ordinates the community and at-home palliative care services provided within its territory. CSSS-IUGS staff evaluates the person’s needs and those of the family and provides the services or directs them to the appropriate organization. 69 La Rose des vents de l’Estrie 819-823-9996 Our services are available to person’s whose life expectancy is less than a year, regardless of their illness, to remain at home until death. The following services are available: information and referral, support by a psychologist, escort transport, friendly visits, support groups and workshops. Respite services are available at home for individuals at the end of their life, and are offered by volunteers. A list of individuals who provide occasional respite services is available upon request. Financial aid is available to help pay for medication or to provide other essential needs. Specific criteria must be met. L’A.R.C.H.E de l’Estrie 819 348-2670 (223) Support organization that provides people Living with HIV/AIDS and their loved ones the means to reclaim and maintain a quality of life filled with respect and dignity. Services offered: lifestyle support and follow-up, day center, accompaniment to medical appointments, transitional lodgings, and different activities intended to promote the global health of HIV/AIDS victims in Estrie. 70 Compassionate Care Benefits Since January 4, 2004, compassionate care benefits may be paid to a person who has to be absent from work to provide care or support to a gravely ill family member at risk of dying within 26 weeks. Human Resources Development Canada (HRDC) (1 800 808-6352) administers the employment insurance program. Web site: www.servicecanada.gc.ca Who is eligible? Individuals qualifying for employment insurance who have to take care of a spouse, or common-law partner, mother, father, child or common-law partner’s child. You must provide an HRDC medical certificate signed by a physician. The certificate attests to the fact that the family member who is gravely ill and may die within the next 26 weeks needs a or many family members to: o provide psychological or emotional support, or o arrange for care by a third party, or o directly provide or participate in the care. Eligibility Requirements To receive this benefit you must have accumulated 600 insured hours in the qualifying period. To be eligible for compassion care benefits, you must prove that: o your regular weekly earnings from work have decreased by more than 40% o you have accumulated 600 insured hours of work in the last 52 weeks, or since the start of your last claim (this period is called the qualifying period). 71 Duration of the allowance Six paid weeks can be shared among members of the family; each must be eligible to receive benefits. Please note that there is a twoweek unpaid waiting period for each individual. Amount of benefit The basic amount is 55% of your average gross insurable earning for the last 20 weeks of employment or less, depending on the situation. The Appeal Process Anyone can appeal a decision made by an HRDC employee by filing an appeal with the Board of Referees. To assist you in this process contact the Mouvement des chômeurs et chômeuses de l’Estrie (819 566-5811) The Death of a Loved One Certain CSSS’s and community organizations provide support services to those grieving the loss of a loved one. Contact your local CSSS for this information. Certain psychologists in private practice specialize in assisting in the bereavement process. Contact the Ordre des psychologues du Québec (1 800 561-1223) to obtain a list of psychologists in your area. Grief support services are often included in the services offered by funeral homes. As well, other support services available to you are: La Rose des vents de l’Estrie 819 823-9996 La Coopérative funéraire de l’Estrie 819 565-7646 Le Mouvement la Porte Ouverte 819 562-0227 Les amis compatissants de l’Estrie 819 820-1407 L’accueil psychosociale du CSSS-IUGS 819 780-2222 72 When there is a death in the family, members must also take care of a number of related responsibilities: funeral, will, etc. The Funeral An adult can decide on his or her funeral and burial arrangements. If these decisions have not been made by the deceased, then the decisions are made by the heirs or surviving family members. Usual methods of disposing of the body are burial, cremation or donating all or parts of one’s body to science. The steps to take Contact either, depending on the wishes of the deceased, a funeral or crematorium director. Generally, the funeral director can organise all of the necessary details concerning the funeral and afterwards: (informing the relevant institution if the body is being donated for scientific purposes, arrange for a religious ceremony or burial arrangements). The costs Funeral costs are borne by the succession and not by the heirs who made the arrangements. Filing a complaint The Office de la protection du consommateur (1 888 672-2556) is an independent agency, created by the government of Quebec to supervise the application of, among others, the Consumer Protection Act, and the Act respecting prearranged funeral services and sepultures. 73 Leave due to death or to attend a funeral The Labour Standards Act allows a salaried employee to take a certain number of paid or unpaid days, depending on the case, due to a death or for the funeral of a family member. An employee may be absent from work for one paid day and four unpaid days due to the death or to attend the funeral of a spouse, child or spouse's child, father, mother or sibling. An employee may be absent from work for one unpaid day due to the death or for the funeral of a son or daughter-in-law, a grandparent or grandchild, or spouse's parent or sibling. In the event the situation arises, the employee must inform the employer as soon as possible Où s'adresser Commission des normes du travail Illusion emploi (groupe populaire de défense des droits) 819 820-3441 819 569-9993 Employment Assistance Program (Special Benefits): in the Case of a Death Special benefits may be paid out to you to help you cover the funeral costs of an individual in a precarious financial situation. These benefits are to be paid as a last recourse, if the deceased assets cannot cover the costs. The person having paid the costs of the funeral will be reimbursed. Benefits In the case of a death, up to $2,500 in funeral costs could be reimbursed per deceased adult or child. Reimbursement of funeral expenses will be made to the person who paid these costs. Costs can be claimed by a family member, that is, up to a first-cousin, a common-law spouse, by the family resource (if the person was residing in an institution), a minister or by the Public Curator. Should the deceased’s financial resources not be sufficient to pay for funeral costs then costs may be reimbursed. The deceased nor the person requesting reimbursement need be a recipient of employment insurance. 74 Conditions The Ministry will include the following in their assessment of eligibility to receive financial aid: o The payout of a life insurance policy; death benefit from the Quebec Pension Board or other public bodies; o Total liquid assets; o Value of the deceased’s total assets. Contact: Centre local d’emploi (CLE) 819 820-3411 Contact the local employment centre. In order to receive authorization, you must obtain forms from the local employment centre. Complete and return them along with supporting documents for the funeral expenses. La régie des rentes du Québec: Death Benefits The Régime des rentes du Québec (1 800 463-5185) provides financial aid to the family after the death of someone who has sufficiently contributed during their lifetime to the Quebec Pension Plan. The Surviving Spouse’s Pension is paid out to a legal spouse or common law spouse, if cohabitation occurred during at least the last three years that the deceased person contributed to the pension plan, or living together for one year if a child was born or adopted. The Orphan’s Pension is paid out to each of the deceased’s children until the age of 18. In 2013, the amount paid out was $228.66 per month. The death benefit is $2,500 (maximum). 75 FINANCIAL ASSISTANCE Many among us must incur additional expenses to ensure that our loved one who is ill, with disabilities or at the end of their life receives the support and services they need. This may be very costly. Over the last twenty years, the health system has gone through many reforms that have transferred expenses previously paid by this public institution to the individual or their family. There are certain governmental programs that offer financial aid to individuals with a disability and to their family. Tax Credits There are a number of different tax credits offered at the provincial as well as the federal level. Some are for the individual with a disability while others include their family. Changes to these credits regularly occur at the time the Minister of Finance presents the budget. Listed hereafter are only a few. Some Definitions A refundable tax credit is an amount paid out to anyone meeting the eligibility requirements, even if the person has not paid any income tax. Often this type of assistance is geared to those with low and modest incomes, since a maximum allowable annual income is established. A non-refundable tax credit reduces the income tax that the person would have to pay. To take advantage of this credit one must usually be in a high income tax bracket, or have investments and holdings. 76 Federal Tax Credits The Non-Refundable Tax Credit for Medical Expenses This credit allows a taxpayer to claim an amount for medical expenses. Eligible expenses are the following: Professional services not covered by the public health system; Medication; Orthotics Prosthetics; Glasses The costs of adapting a vehicle or home; The costs of private home health insurance; Professional services or home care services offered by an attendant; Costs associated with an establishment for persons with diminished capacities (ex. a CHSLD) Etc. The Non-Refundable Tax Credit for Dependant Persons 18 Years or Older with a Disability A taxpayer may claim an amount for his children or grandchildren or those of his spouse who are over the age of 18. This deduction can also apply for other relatives or those of the spouse over the age of 18 who have a mental or physical disability. Non-Refundable Tax Credit for Caregivers A taxpayer may claim an amount, under certain conditions, for aid for a family member over the age of 18 who is under his or her guardianship, and residing at the same address. Contact : Agence des douanes et du revenu du Canada 1 800 959-7383 77 Provincial Tax Credits Non-Refundable Tax Credit for Medical Expenses This credit allows a taxpayer to claim an amount for the following medical expenses: Professional services not covered under the public health system; Medication; Orthotics or prosthetics; Glasses; Costs associated with adapting a vehicle or a home Private health insurance premiums Costs of professional services fees or home care workers Costs associated with full-time residence in a nursing of a person with impairments (ex: a CHSLD); Etc. The Non-Refundable Tax Credit for Other Dependant Persons This credit applies to all people 18 years or over who are in charge of you due to a mental or physical disability. The person must live with you. Please note that the conditions for this benefit are so restrictive that only a few people will be eligible. The refundable tax credit for medical expenses You may be entitled to a refundable tax credit for medical expenses if you meet certain conditions. The tax credit for homecare providers You may apply for a refundable tax credit of up to $1104 for each eligible relative that lived with you in Canada in a lodging where you or your spouse are owners, tenants or sublet-tenants and if you meet st the two following conditions: If you resided in Quebec the 31 of December, and that no person, other than your spouse, has applied in your interest for a tax credit. 78 The Tax Credit Respecting the Housing of a Parent In 2013, a taxpayer who is 70 years old or more may obtain a tax credit equalling 31% of admissible expenses in order to obtain homecare services (ex: domestic services, direct personal services). Expenses are admissible up to a maximum of $19 500 per year for an autonomous person and $25 500 for a non-autonomous person. This is equivalent to a tax credit of a maximum of $6045 for an autonomous person and $7 905 for a non-autonomous person. Tax credit for respite of caregivers Caregivers may claim a refundable tax credit for the expenses incurred to obtain specialized respite services for the care and supervision of a person with a significant disability. This tax credit can reach a maximum of $1 560 per year. This is valid as long as the services were provided by a person with a recognized diploma. Assistance in filling out tax forms Each year, hundreds of volunteers, trained by Revenu Quebec and Revenue Canada, assist those who need help in filling out their tax forms, for little or no charge. This service offered in February, March and April, is for those individuals who do not have the means to get professional assistance. For information : Revenu Québec www.revenu.gouv.qc.ca 819 563-3034 In addition, a number of community centres for seniors and public training facilities, offer, for a small fee, assistance in filling out tax forms for those with low-incomes. Association québécoise de défense 819 829-2981 des droits des retraité(e)s et des préretraité(e)s (AQDR) section- Sherbrooke Solutions Budget Plus 819 563-0535 79 Individual and family assistance (Income support) The Act respecting income support, employment assistance and social solidarity includes the possibility of those eligible of receiving assistance to receive a supplementary amount if they are the caregiver of person having lost a significant amount of independence, and this, even if they do not reside in the same dwelling. It includes special benefits for certain health related needs or other specific needs. For example, benefits can be for: transportation services for medical reasons; funeral costs; optometric services; specialised equipments or supplies (disposable briefs due to incontinence) moving expenses due to health reasons. In order to receive these benefits you must make the request through the financial assistance agent assigned to you and include justification of the need for this benefit (example: a medical report). In addition, for many of these benefits the recipient must have been part of the program for a certain number of consecutive months. For information Centre local d’emploi (CLE) Sherbrooke Action Plus de Sherbrooke 80 819 820-3411 819 564-4418 LEGAL DOCUMENTS Legal terminology can sometimes be difficult to understand. This section of the guide offers information on ―Legal Documents‖ as well as ―Protective supervision‖ in comprehensive terms. The information is also available on the following website: www.educaloi.qc.ca Power of attorney A mandate, or power of attorney, is a contract that lets you (the principal) name another person (the mandatary) to act on your behalf ―in the performance of a judicial act,‖ states the Quebec Civil Code. This person can be a member of your family—a child or brother, for example—or a professional (accountant, notary, etc.). In all cases, this person must be trustworthy, able, and willing to carry out the task. The power of attorney does not have a deadline; it is relinquished when the mandate is carried out or when the mandatary is declared inapt or dies. There are several types of mandates, the following being the most common: The banking mandate. It gives the mandatary permission to withdraw money from one or more of your bank accounts to pay, for example, your rent or running expenses. You need only go to your financial institution with your mandatary and sign the appropriate forms. This power of attorney is free. The specific mandate. If you want your mandatary to collect the rent from your income property or communicate with the revenue service on your behalf, give the mandatary a specific power of attorney. As the name indicates, this mandate only gives the mandatary the powers required to carry out the assigned tasks. Some organizations and businesses offer their clients standardized power of attorney forms. 81 The general mandate. Are you taking a trip that will last several months? Will you be hospitalized for an extended period of time? Provide your mandatary with a general mandate so that they can take care of your affairs while you’re away. In doing so, you will give your mandatary the power to conduct simple administration (safeguard and maintain assets) or full administration (ability to sell or dispose of the assets). As you can guess, if the first document is practical, the second must be used with extreme caution under all conditions. ―This type of mandate is very dangerous, because it gives the mandatary the power to sell your house and your investments.‖ Source: (translation) Le Bêl Âge, Maryse Guénette http://www.lebelage.ca/argent_et_droits/vos_droits/prudence_avec_les_procurations. php Mandates in anticipation of incapacity What is incapacity? Incapacity is defined as a person’s inability to care for himself or his property. There are various degrees of incapacity: it can be partial or total, temporary or permanent. How do you determine whether a person is incapacitated? An evaluation is a necessary step to putting into place protective supervision or homologating a mandate in anticipation of incapacity. The evaluation has two parts: Medical Evaluation: The medical evaluation is done by a doctor and deals with the state of the person’s health. The doctor can identify conditions, illnesses, and symptoms that might affect a person’s mental abilities. This evaluation also deals with the degree of incapacity. Psychosocial Evaluation: The psychosocial evaluation is usually done by a social worker in the health services network or in private practice. The purpose of this evaluation is to determine the person’s ability to act independently and her need for protection. The professional will also try to determine whether the person should be cared for by family and friends or the Public Curator. 82 What is a mandate in anticipation of incapacity? It is a document that lets you name, in advance, one or several people to look after your well-being and manage your property if you become incapable of doing this yourself. In legal terms, this state of being unable to look after yourself and your property is called ―incapacity.‖ The person you name in your mandate in anticipation of incapacity to look after your well-being and manage your property is called a ―mandatary.‖ A mandate in anticipation of incapacity can be made in two ways: Notarized Mandate: A mandate made in front of a notary gives the document some authenticity. In other words, it will be harder to challenge in court. The notary certifies that you agree to the mandate and keeps the original copy. He then registers it in the Register of Mandates of the Chambre des notaires du Québec. Mandate in the Presence of Witnesses: This type of mandate must be signed by you and two witnesses who can confirm that you are of sound mind, which means that you can express your wishes and understand the consequences of your decisions. The witnesses cannot be people who will benefit from the mandate. Homologation: Homologation is a legal proceeding that aims to confirm the existence and extent of the principal’s incapacity, and to verify that a mandate exists and confirm that it is valid. When the person who initiated the mandate becomes incapacitated, his or her mandatary must address the court to request the homologation of this document and attaches the medical and psychosocial evaluations confirming the person’s incapacity. Recourse: Once the mandate is homologated, if the mandatary is negligent or commits fraud, the incapacitated person or his or her family can request the court to relieve him or her of their duties, or can lodge a complaint with the Public Curator. The latter has the right to investigate and, if need be, intervene on behalf of the incapacitated person, and can request that the court rescind the mandatary’s responsibilities and proceed with protective supervision. 83 Wills Three types of wills are recognized in Quebec: o notarial wills o holograph wills o wills made in the presence of witnesses. What is a notarial will? As the name suggests, a notarial will is written by a notary. Notaries can write a will that follows the legal rules, that reflects your wishes, and that takes into account your family and financial situation. Note that a lawyer can also create a will, but it will then be a will ―made in front of witnesses.‖ What is a will made in the presence of witnesses? As the name suggests, this kind of will must be signed in front of two witnesses together at the same time. Anyone 18 or older can be a witness. But a person who will benefit from the will cannot be a witness. The witnesses must confirm that it is your will and your signature, and sign the will after you sign. A will prepared by a lawyer is considered to be a will made in the presence of two witnesses. This kind of will can be handwritten, typed on a typewriter, or written with a computer. If it is written on a computer, only a printed and signed version has legal value. If you don’t write your will yourself, you must make sure that you and your witnesses initial or sign each page of the will. You don’t have to read the will in front of the witnesses. But if you cannot read it yourself, because you have vision problems, the will must be read to you by one of the witnesses. What is a holograph will? A holograph must be entirely written by you and signed by you. This is the simplest kind of will, because there are only two requirements: 1) It must be written by hand, and not on a computer or using another mechanical means. Disabled people can write using their mouths or feet. 2) It must be signed by the person making the will. Even if you don’t need witnesses for this kind of will, it is a good idea to tell your loved ones where you plan to keep it. To avoid confusion, when you write a second will, make sure to include all your wishes and to cancel all old wills. You can do this by writing ―This will completely revokes any earlier wills.‖ Source: Éducaloi, 2013, http://www.educaloi.qc.ca/en/capsules/wills 84 PROTECTIVE SUPERVISION There are four types of people who can receive protective supervision in case of incapacity: 1. people with a degenerative disease, such as Alzheimer’s; 2. people with an intellectual handicap; 3. people with a mental illness; 4. people with various organic symptoms following a stroke or head trauma. Protective supervision can be: Private when the law designates a loved one to represent the incapacitated person; Public when it’s the Public Curator that is designated to represent the person incapacitated or manage that person’s property. The Civil Code has three specific kinds of protective supervision for adults: 1. Curatorship 2. Tutorship 3. Adviser Curatorship Curatorship is a form of protective supervision that can be requested for an adult that cannot exercise their rights or manage property on their own. The legal term for this is called ―incapacity.‖ Curatorship can be established for adults who suffer from a total incapacity (e.g.: a person whose mental abilities have been seriously affected by illness or accident) and permanent (e.g.: in the case of a degenerative disease like Alzheimer’s). In the case of partial or temporary incapacity, tutorship is more appropriate because it allows the protected person to keep some level of autonomy and to adapt to the situation. 85 Curatorship is the most drastic kind of protective supervision, but it is always used in the best interests of the protected person. It is meant to ensure his protection, make sure his property is well-managed and give him a way to exercise his rights. With curatorship, the protected person does not really have any independence. He must always be represented by his curator, who is the person the court names to make all decisions about the protected person's property and wellbeing. A curator is the legal representative named by the court to represent a person who has become incapacitated, ensure his protection, and manage his property. Anyone in the circle of friends and family of the person needing protection can be named as his curator, as long as the person is an adult or emancipated minor (person under 18 with some or all of the rights of an adult). This is called ―private curatorship.‖ The curator can be a spouse, partner, family member, friend, or another person close to the protected person. If no one in the protected person’s circle of friends and family can or wants to be the curator, the court will name the Public Curator to act as the person’s curator. This is called ―public curatorship.‖ The curator must watch out for the overall well-being of the person he is protecting. He will act on behalf of the protected person when that person needs to exercise his rights. The curator must always take into account the life circumstances, needs, mental state, and other aspects of the protected person’s situation. Depending on his needs, a person might have two curators: one who looks after his physical and mental wellbeing and another who looks after his property. Source: Éducaloi, 2013 http://www.educaloi.qc.ca/en/capsules/curatorship-adults 86 Tutorship Tutorship is a form of ―protective supervision,‖ a legal protection that can be requested for an adult who is not able to exercise her rights and manage her property by herself. In legal terms, this state is called ―incapacity.‖ There are three kinds of protective supervision: advisers for adults, curatorship, and tutorship. Tutorship gives the incapacitated person more decision-making freedom than curatorship. Tutorship can be put into place for adults who suffer from a temporary incapacity (for example, a lengthy hospitalization following a serious car accident) or partial incapacity (for example, a person who suffers a mild intellectual handicap, but is still somewhat independent). Tutorship is always used in the best interests of the incapacitated person. It is meant to ensure that she is protected, her property is taken care of, and that she can exercise her rights. If the adult’s incapacity is partial, tutorship allows the protected person to keep some independence: she can exercise her rights and manage her property as far as she has the mental capacity to make decisions and the ability to explain her wishes. The situation is similar to that of a minor, who can make small purchases but cannot make decisions that will have a serious effect on her property and finances, such as selling a house or giving up her right to an inheritance. The tutor must ensure the overall well-being of the person he is protecting. He acts for her when she needs to exercise her rights. He must always take into account her life circumstances, needs, mental abilities, and the other aspects of her situation. Anyone in the circle of friends and family of the person needing protection can be named as her curator, as long as the person is an adult or emancipated minor (person under 18 with some or all of the rights of an adult). If no one in the protected person’s circle of friends and family can or wants to be the curator, the court will name the Public Curator to act as the person’s curator. Source: Éducaloi, 2013 http://www.educaloi.qc.ca/en/capsules/curatorship-adults 87 Advisers for Adults Like tutors and curators, advisers provide a kind of ―protective supervision.‖ An adviser can be requested for an adult who needs help and advice to exercise her rights or manage her property. Of all the kinds of protective supervision, the adviser for adults gives the protected person the most independence. The person generally continues to take care of herself. For example, she continues to make decisions about health care. But she can count on her adviser’s help for certain types of contracts and other things related to managing her property, such as selling her car or signing a lease. Note that we are talking about help, not representation. Under the law, a person helped by an adviser keeps the freedom to manage her own affairs. This kind of protective supervision is appropriate for adults who can take care of themselves, but need help and advice to manage their property. People sometimes need this kind of help or advice because of a slight intellectual handicap, an accident, failing mental abilities due to age, or a temporary incapacity caused by an illness. An adviser must be a family member, close relative, friend, or other person who shows a special interest in the person who needs help. The adviser must be an adult (or fully emancipated) and capable of fully exercising her rights. The Public Curator cannot act as an adviser to an adult. An adviser’s role is limited to helping the person in very specific situations. The person getting help remains responsible for managing her property, but can get advice from her adviser. The judgment putting into place this kind of protective supervision describes the types of things the person can do without her adviser’s help and those for which help is required. Source: Éducaloi, 2013 http://www.educaloi.qc.ca/en/capsules/advisers-adults 88 KNOWING HOW TO CHOOSE A PRIVATE RESIDENCE WITH SERVICES Commonly known as: senior citizens residence residence for autonomous or semi-autonomous persons This guide is an adaptation of the booklet, Knowing how to choose a living milieu. Private residences with services produced by Josée Plante, tts., Health and Social Service Center, Grand Littoral, CLSC Bellechasse in collaboration with the Committee for Senior Citizens and Retirees of Bellechasse, It was also inspired by the Bottin du Programme Roses d’Or 20062008 of the FADOQ – Quebec and Chaudière-Appalaches regions of The practical guide for choosing a private senior citizen residence, CLSC Basse-Ville-Limoilou-Vanier, and from Always my home; Vivre en residence privée pour personnes âgées, Ministère de la Famille et de l’Enfance. Produced by the Regroupement des proches aidants de Bellechasse (2007) Reproduced by the Table de concertation des organismes communautaires secteur personnes aînées de Sherbrooke (2013). 89 A little thought, a better choice! Searching for a new milieu in which to live often brings about a state of anxiety and insecurity for the person being helped and for the family members. ―What’s waiting for me? Where am I going to end up? Who will be my new neighbours?‖ These are some of the questions that a person who is losing autonomy normally wishes to have answers to during this transition period. It is evident that such a change implies that everyone involved will have to adapt as much as possible. As the saying goes, ―With every loss, there is a gain‖. If the person you’re helping leaves home to go live in a private residence, it is obvious that the aim of this move better meet certain needs in order to compensate for some losses and improve the general quality of life. It is worthwhile to take your time before making a choice on something this important. It is essential to clearly identify the concerned person’s needs, preferences and expectations. It is also recommended to visit a number of residences in order to compare the advantages of each establishment. 90 Evaluating the needs of the person Among the main services offered by a residence, choose the ones that correspond to the needs of the concerned person. Nourishment Meals eaten at one’s will in the apartment Table service (Dining room) Room service Assistance with the cutting of food Assistance with feeding Dressing/hygiene Assistance/supervision for bathing or showering Assistance for daily hygiene (hair, teeth, shaving etc.) Assistance with incontinence Partial assistance in buttoning or tying certain pieces of clothing Total assistance with dressing Mobility Assistance in moving (ex: from sofa to bed) Assistance with outings Care Assistance in administering medication Assistance in dressing wounds Assistance with implementing glucometer testing Injections (ex: insulin) Other care 91 Other Memory, reasoning or behavior problems affecting the person Needs and supervision A few questions to determine the preferences and the expectations of the concerned person Does the person wish to live in a small, family-style residence or in an apartment-type complex with services? Does the person want a private room or an apartment? Does the person wish to have a private bathroom? In which municipality/city or neighborhood does the person wish to live? Does the person wish to take furniture? Which furniture? (create a list) Does the person wish to receive guests at meal time? Does the person wish for outdoor green spaces? Does the person wish to have access to a balcony, a place where people can sit, a garden etc.? Does the person want close services (supermarket, pharmacy etc.)? Does the person wish to prepare light meals in the room and keep food (small refrigerator, pantry, toaster) Does the person want in-house services such as hairdressing or social activities? Does the person want a choice of menus and advance notice? Does the person wish for the presence of a Residents’ Committee at the residence? 92 2. Evaluating the residence and the services it provides Here are a few important elements to consider when visiting a residence. Dispositions of the dwelling Dimensions of the apartment, divisions, number of rooms Dimensions of the room and storage space Accessibility of the lodging (ramps, wheel chair etc.) Dining room Private bathroom Elevator Private balcony Garden area Sun room, exterior views Air quality, possibility to open windows Emergency call system In-house Services Security and surveillance system 24/7 Nursing care Medical visits Assistance in mobility Bathing assistance Daily hygiene Hairdressing services 93 Services available in the neighbourhood Supermarket, pharmacy CLSC, medical clinic Church Caisse Bank Living milieu Quality care, ambiance Number and type of employees, working hours (nurses, preposé for residents etc.) Name of the proprietor; how long in ownership, does the proprietor live on the premises? 3. Available budget o Set up a list of the present and future revenue of the concerned person o Set up a list of expenses Groceries Clothing Medication Personal Products (Hygiene, etc.) Telephone Cable Transportation Outings Other 94 Determine the residence’s basic fees and what is included in this cost Verify supplementary fees expected for certain services Verify with the proprietor the possibility of obtaining supplementary services in the event of a loss of autonomy. What type of services and at what cost? Could you benefit from a tax credit for HomeSupport for Seniors? In 2013, a taxpayer who is 70 years old or more may obtain a tax credit equalling 31% of admissible expenses in order to obtain homecare services (ex: domestic services, direct personal services). Expenses are admissible up to a maximum of $19 500 per year for an autonomous person and $25 500 for a nonautonomous person. This is equivalent to a tax credit of a maximum of $6045 for an autonomous person and $7 905 for a non-autonomous person. Are you eligible for the lodging allocation? To find out more about this program, inquire at the Société d’Habitation du Quebec (SHQ) 1 800 4634315. The financial assistance may be up to $80 per month. 95 4. Sensible questions A person can terminate a lease if they cannot continue to live in their home due to a disability, or if they are relocating to one of the following: A residential or long-term care facility (CHSLD); A seniors’ home or a retirement home that provides services such as offering meals and housekeeping to its residents; A low-rent housing unit (HLM) A non-profit community-owned housing unit A private home where the Rental Assistance program (Programme de supplement au loyer) applies. A tenant must respect certain conditions: First, a written notice must be sent to the owner three months prior to the departure date that has to be mentioned in the notice. If the lease is for less than 12 months, then the notice must be sent one month prior to the departure date. Included with the notice must be the confirmation of admission into the residence, or a medical certificate stating that the reason for the move is due to disability. Original documents must be sent to the owner by registered mail. The individual is responsible for the three months’ rent following the date of the notice. It is important to keep the postal receipt and photocopies of the documents sent in case of a problem. Following the onset of a disability: If a person can no longer live in one’s home due to a disability, then a notice of lease termination along with a medical certificate attesting that the disability is permanent, must be sent to the owner. 96 ACRONYMS ACTE AEIFADIRA AFEAS APPAMME AQDR ASSS CAB CAVAC CSST CAAP CALACS CH CHSLD CHUS CRE CLE CLSC CSSS-IUGS DRHC DSASA FADOQ Association des accidentés cérébro-vasculaires et traumatisés crâniens de l’Estrie Association estrienne pour l’information et la formation des aînés, (Dénoncer, Informer, Référer, Accompagner) Association féminine d’éducation et d’action sociale Association des proches de personnes atteintes de maladie mentale de l’Estrie Association québécoise de défense des droits de personnes retraitées et préretraitées Agence de la santé et des services sociaux Centre d’action bénévole Centre d’aide aux victimes d’actes criminels Commission de la santé et de la sécurité du travail Centre d’assistance et d’accompagnement aux plaintes Centre d’aide et de lutte contre les agressions à caractère sexuel Centre hospitalier Centre d’hébergement et de soins de longue durée Centre hospitalier universitaire de Sherbrooke Centre de réadaptation Estrie Centre local d’emploi Centre local de services communautaires Centre de santé et de services sociaux- Institut universitaire de gériatrie de Sherbrooke Développement des ressources humaines Canada La direction des services aux aînés et du soutien à l’autonomie Fédération de l’Âge d’Or du Québec 97 ACRONYMS… HLM LAAA MSSS OMH OPHQ OSBL PIED PAD PALV PASAD RAAN RAMQ RI-RNI RI-RTF SAAQ SAPA SHQ SMAF STS UCDG URFI UTA Habitation à loyer modique Programme de logements adaptés pour aînés autonomes Ministère de la santé et des services sociaux Office municipal d’habitation Office des personnes handicapées du Québec Organisme sans but lucratif Programme intégré d’équilibre dynamique Programme d’adaptation du domicile pour personnes handicapées Perte d’autonomie liée au vieillissement Programme d’activités de stimulation à domicile (répit aux proches) Regroupement des aidantes et aidants naturels Régie de l’assurance maladie du Québec Ressource intermédiaire- Ressource noninstitutionnelle Ressource intermédiaire- Ressource de type familiale Société de l’assurance automobile du Québec Soutien à l’autonomie des personnes âgées Société d’habitation du Québec Système de mesure de l’autonomie fonctionnelle Société de transport de Sherbrooke Unité de courte durée gériatrique Unité de réadaptation fonctionnelle intensive Université du troisième âge 98 BIBLIOGRAPHY Aidant naturel, pas si naturel que ça! Action-Services aux aidants de parents âgés de Longueuil, Longueuil, 1999. Prévenir l'épuisement en relation d'aide, Arcand, Michelle et Brissette, Lorraine, Ed. Gaétan Morin, Montréal, 1994. Guide des aidants, Leçons de vie, Association Canadienne de soins palliatifs et la Fondation GlaxoSmithKline Inc, Canada, 2002. Grille d'évaluation de la violence Association estrienne pour l'information et la formation aux aînées et aînés (AEIFA) Lacroix, Lyne, inspiré de Caregiver and Care-receiver Indicators of Abuse (IOA) et Dépistage de l'abus chez les aidants naturels.(DACAN) (Reis-Nahmiash). Bottin des organismes communautaires, et gouvernementaux, municipaux, Sherbrooke, Centre d'Action Bénévole de Sherbrooke, 2004. Guide à l'intention de l'aidant, La Société Alzheimer, Toronto, 2003 Chez soi, Le premier choix. La politique de soutien à domicile, Ministère de la Santé et des Services sociaux, Québec, 2003 RAAN, La Boussole, Guide des droits des services et des ressources, Montréal, 2004. Guide pour les personnes qui aident un proche en perte d'autonomie, Table de concertation aux aînés de la MRC Memphrémagog, Magog, hiver 2004. Aider sans s'épuiser, Table de concertation pour les aînés du Val Saint-François, Val Saint-François, printemps 2003. Traduction de Burden, interview de Zarit par le Centre de recherche en gériatrie, Hôpital d'Youville de Sherbrooke, Grille de Zarit, fardeau de tâches. Calendrier, Répertoires des activités et services offerts aux personnes aînées de Sherbrooke, Table de concertation des organismes communautaires, secteur personnes aînées de Sherbrooke, 2005. Todays Caregiver, Miami, Floride. Carnet Communautaire des aînés, branchant les aînés à leur communauté et en les réunissant (2009). Ministère de la Famille et des Aînés et la Fondation pour le bien vieillir. www.educaloi.qc.ca 99 Names and telephone numbers Role Name Number Family doctor Home care Co-ordinator Visiting Nurse Physiotherapist Occupational Therapist Home Care Worker Volunteer Spiritual Advisor Pharmacist Medical equipment supplier Dietician Other resources Family and friends 100 101