Frequently Asked Questions

General FAQs

The care needs for my disabled husband are getting to the point where all of the medical professionals, as well as my adult children, are telling me I need to place him in a long term care facility. I know my health is suffering and it is getting harder to give the care my husband needs. I am afraid my husband will feel betrayed and abandoned. How can I make the right decision for everyone involved?

You are in a difficult situation. It sounds like you are a kind and caring individual who wants to do right by everyone. I'm glad you are reaching out for some help Family caregivers are in the state of having to make tough caregiving decisions when their care recipient's care needs increase, when their abilities to care decrease, or when other circumstances hamper the care that is needed. Making caregiving decisions generates stress, anxiety and worry for many caregivers since such decisions often mean a change in the care receiver's life and there are no guarantees a decision will work Before you make a decision it is important to: Understand your motives, attitudes, and feelings. What do you want and how do you feel about what you want? Learn from past experiences and those of others. Reflect on your past caregiving decisions and consult other caregivers who have made similar decisions. Understand your husband's needs and feelings. If you can't get these from him you may need to ask others, such as other relatives or health care providers. Involve your husband in decisions. No adult wants decisions made for him or her, no matter how wise those decisions may be. Talk with your husband about his desires and priorities. When he sees his ideas or wishes incorporated into the decision, he has a vested interest in making the decision work. Involving him increases the likelihood he will consider a suggestion and accept a change, even if he prefers a different one Investigate potential options. Recognize your husband's right to take risks. Recognize your right to on-going health and well being.

My wife has Alzheimer's disease. I've been caring for her in our home since she was diagnosed five years ago when we were 70. I love my wife and I am happy to care for her. However, sometimes I find myself feeling resentful and then I feel guilty about feeling resentful. What can I do?

First, I want to commend you for the love and support you are offering to your wife. Second, it is important to remember feelings are neither good nor bad, they just are. Third, emotions serve an important purpose. They are messages telling us to stop, look, listen, and to pay attention to what is happening. They can be a sign that change is needed. Listening to our feelings can help us to ask fundamental questions like: 'What is wrong?' 'Why do I feel this way?' 'What can I do about these feelings?' 'What will help?' Asking these questions is the first step toward finding answers. So remember feelings and emotions are signs that we must not ignore. Resentment can sometimes happen when we are spending so much time caring for someone else that we neglect to care for ourselves. It is very important to balance what you give with what you receive in nurturing and support. When the amount you are giving out weighs the amount you are receiving to the point that it becomes burdensome, resentment of course follows. Self-sacrifice and giving 'until it hurts' are not helpful to anyone, especially your care recipient (your wife does not want to be a burden to you). In order to enjoy your wife and still provide needed care it is crucial that you balance your own needs with those of your wife. Therefore, you must realistically determine your limits and decide how much you can do. It is important to come to the realization that no matter how much you do you can't remove your wife's suffering or change her diagnosis. Here are a few strategies that are designed to help caregivers prevent and deal with feeling resentful. Prioritize your own self-care. Find ways to maintain activities you enjoy and activities that promote your own health and well-being. Get sufficient rest. This is critical for your own sake and the sake of your wife. Set limits. Determine what you can and can not do and then communicate this honestly with your self and your wife, if she is able to comprehend. Also, saying no at times may be the only way to ensure that your wife does not become overly dependent and continues to do the things she can. Find small but important ways to help yourself. Only you know what these are. Your wife's self-esteem will be encouraged and your feelings of resentment will be reduced when you find ways to help her to help herself. Take time for pleasure. Plan and carry out activities or projects together that are pleasant for both you and your wife. Try not to let the tasks of caregiving dominate your relationship.

My mother recently had a stroke and will be moving in with me when she gets out of the hospital. She will be confined to her bed. What are some things I should do to prepare a room for her?

Since your mother will need to stay in bed she may prefer that her bed be located in a more common room, like a living room or den. In this way she can participate in the daily family activities. She is also likely to enjoy being near a window and sunlight as well as being surrounded by her favourite pictures, music and pets. Her room should be comfortably warm or cool depending on the season, with good air ventilation (no drafts). Some furniture which is helpful to have at arm's reach of her bed include: A small table (the same height as the bed) for medication, snacks, radio, writing paper, etc. Even better is a table with a few drawers (like in a hospital) where she can put some personal items like comb, brush, toothbrush, and bedpan A small bell, intercom or buzzer to call for help. Something fresh to drink especially water and some favourite snacks. A place to put magazines, books, television remote control, knitting, etc. A comfortable chair for her guests. Good lighting for talking with people, reading, and watching television. A sturdy food tray to help make eating more comfortable in bed A telephone. You may also need some special equipment to help you. Talk with your home care case manager to arrange for the things that you need to borrow, rent or buy. These may include: An adjustable bed (similar to a hospital bed) A bed table high enough to fit over one's knees lying in bed. A back rest to help her sit up in bed Sheepskin padding or pillows, foam or sponge pads to help prevent bedsores. Incontinence pads for under her in bed in case there is any urine or feces (stool) incontinence. A footboard made of strong cardboard, or something else to allow her to push against it so she can keep her body position comfortable.

I'm having trouble dealing with my mom's death. What should I do?

It is very good that you are reaching out to find help regarding your difficulties. It is hard to anticipate how each of us will react when death occurs. An important thing to remember is that there is no right or wrong way to behave. You must do what feels right to you and remember that grieving is a painful and necessary process. The following is a list of thoughts regarding grieving developed by the Canadian Hospice Palliative Care Association (2004). Some of these thoughts may be helpful as you move through your grief process. Accept your need to grieve and to feel your loss. It is okay to cry and express your sadness. Talk about your feelings if this gives you comfort. Choose someone you are comfortable with who is a good listener. Take your time in resuming your regular activities. Be patient with yourself when you are confused or forgetful. Look after yourself physically. Eat well, exercise and get lots of rest. Poor nutrition leaves you at risk of health problems. Do something nice for yourself each day. Explore what life and death mean to you. Do not isolate yourself. Meet with old friends, talk about your loss, and mention your loved one by name. Be careful when driving. Poor concentration and 'blanking out' can by hazardous. Slow down and let some responsibilities go for a time. Low energy is to be expected. Restrict drugs and alcohol. They can depress your ability to think clearly. Recognize that palpitations, digestive problems, chest pains, shortness of breath are all normal reactions to grief, but it is important to contact your doctor and have them checked out anyway. Make time to do the things you enjoy and just go on living. Try to focus on positive things each day. Take time to be alone when you need it. If prayer is a part of your normal life, be gentle with yourself if it takes a while before you start to pray again. Let others continue to carry you in their prayers. Grieving can affect you in a number of ways - physically, mentally, emotionally, spiritually and socially. A caring network of people is important. People may be reluctant to approach you for fear of invading your privacy or of saying the wrong things in trying to comfort you. Let them see you are open to their support.

I'm feeling concerned about my 83 year old mother. I've noticed she's looking thinner and doesn't seem to be interested in getting together with friends and family the way she used to be. I'm wondering if I should be taking some kind of action?

To intervene or not to intervene- it's a tough question. This could be a life altering question. In addition, it comes with no real easy answer. No matter what you decide, you may have second thoughts. However, it's important to remind yourself that there is no right or wrong way to give care. Although the decision to intervene in a loved one's care is rarely clear-cut, the following list (taken from And Thou Shalt Honor: The Caregiver's Companion) of physical and behavioural changes are definite causes for concern and may help you to make your decision. Appreciable weight loss or gain Sudden paranoia, combativeness, aggression, or hallucinations Disturbing changes in attitude and self-esteem A noticeable decline in hygiene and grooming Excuses for skipping routine tasks like going to the doctor, the hairdresser or the grocery store Lack of interest in friends, hobbies, and activities Social isolation Unpaid bills, or notices about utilities being shut off Unsafe behaviors such as leaving food burning on the stove Frequent falls Frequent memory lapses Getting lost on familiar well traveled routes

I want to be supportive of my father who lives in another city. I'm not sure what would be helpful?

You are among an increasing number of people living at a distance from a person who needs their care. This situation can certainly cause stresses such as guilt, anxiety and frustration, not to mention additional expenses of long-distance calls and travel. There are numerous approaches for you to consider depending on the caregiving situation: Regular contact by telephone and/or email to keep in touch and up-to-date; this also gives you some reassurance that things are all right In brief and regular letters enclose clippings you feel your loved one(s) may be interested in or that may bring a smile to their face. Receiving photographs once in a while will also make them feel more connected to you and give them something to look at time and time again. Encourage a response by sending them a package of stamped pre-addressed envelopes Make tapes to send. It's wonderful for them to hear your familiar voice and they can play them again anytime they want to. You may even want to encourage them to send tapes to you (it may reduce their costs for long distance calls). Contact the family member's neighbour(s) to thank them for looking out for your parent as well as to gain information about services available in the area, etc.. Be sure to leave them your number. Contact the seniors' centre in your parents' community about programs and services available in their community. It is best to do this before the need arises. Ask for their help in contacting services that you may want to arrange for your parent(s). Contact your parent(s) doctor(s) to let them know that you are available and that you have concerns for their well being. Keep a current file. If your parent has a chronic condition or illness, learn as much as you can about it. Communicating is the key, just keeping in touch. The conversations, messages, etc. don't need to be '"news worthy", they just need to be about ordinary everyday happenings, thoughts and feelings from one caring person to another. Of course, it will be more than this if the need for care increases. Your willingness to be prepared, effectively communicating with your loved one and others involved in their care, as well as taking care of yourself will determine your success. This is not an exhaustive list by any means. Please feel free to share any ideas you have or things you have done to be part of the support and care for your loved one who lives at a distance.

I want to arrange a meeting with my brothers and sisters to talk about how to best care and assist our aging parents. Do you have any suggestions as to how I should go about doing this effectively?

Preparation is the key to planning a successful family meeting. This preplanning includes creating a list of the types of help that are needed now and the types that may be necessary in the future. The list needs to contain items pertaining to physical care, social stimulation, transportation, shopping, chores, maintenance around the home, financial assistance, legal issues and other necessities that you and the family identify based on your specific situation. Develop an agenda incorporating items from the above list. This agenda must be shared with each family member before the meeting date so that they can make additions to the agenda as well as to be prepared to discuss the specific topics pertaining to the best ways to care for and support your parents. Two items you may want to include on the agenda are how to include your parents in the decision making process and how they can be encouraged to accept help. Appoint a coordinator, other than the primary caregiver, who will keep things organized so that the primary caregiver can focus on the person who is ill and have time to relax. Exchange solutions and ideas while understanding and acknowledging each person's point of view in a nonjudgmental manner. Allow everyone to share what he or she is able to do to meet various needs. Recognize that family members tend to vary in what they regard as easy and burdensome and therefore certain tasks must be matched with family members according to these varied perspectives. Note: Some of the needs identified may require accessing service providers in the community. Thus, there can be a discussion around who is able to do the research and make contacts as well as consider how to pay for the services. Since some of the services and help you are considering for your parents may be required on a long term basis, it is wise to plan for a review of any agreements made at this meeting at a mutually agreed upon time in order to make adjustments and changes. I suggest that this timeline be a month or two out, not six months. Document the plan by writing down all task designations. Include details and be sure everyone gets a copy. Include everyone affected by the caregiving decisions even if they can't attend the meetings. You may want to hold the first meeting without the involvement of your parent(s) but after that they must be involved, too.

I need to look into hiring someone to help my parents in their home. Where do I begin? Where can I get information or a checklist?

It is important to first complete a thorough assessment of the specific areas of help that you and your parents feel will be of benefit. For example, do they need assistance in the area of personal care (bathing, dressing etc.), household care (cooking, cleaning etc.) or both? In-home help can generally be thought of in terms of skilled help and home support services. Skilled care is under the direction of health care professionals. These services include medical procedures such as blood pressure readings and wound care. In-home support services include housekeeping, meal preparation, etc. Once you have completed an assessment, the next step is to create a job description which clearly states the expectations, duties and responsibilities required. Remember to include items which reflect your own needs in the job description. In addition, it is important to have a written application for employment, a letter of agreement, and documentation of the key employment terms. You are now ready to begin your search for an appropriate individual who is able to effectively assist with the needs you have targeted. A number of options are available to family caregivers for finding in-home help. It is possible to hire a helper from a home health agency or privately. Talking with trusted friends and acquaintances may be another way to find a person suitable to meet both your and your parent's needs. With some foresight and careful planning, it is possible for you to locate the right person for the job.

I am a 46 year old primary caregiver for my husband who has MS. I sense our relationship is changing from one of husband and wife to one of caregiver and care recipient. I do not want this. What can I do to keep our marriage relationship alive?

This is a very important question. Couples who are dealing with the considerable task of adjusting to a serious illness may also need to reestablish respective roles within the family arrangement. For example, when a spouse becomes a caregiver for the other spouse many changes in the previously set patterns of relating to one another must take place. Therefore, each spouse must acquire new skills and insights into nurturing their relationship. The following strategies are recommended by Gordon and Perrone (2004). Focus on the positives. There are rewards associated with caregiving. Some caregivers express a sense of pride, competence, or feeling of being needed. In addition, improved self-esteem may take place when in a caring role, through helping others, one can gain increased feelings of self-worth. It is also suggested that individuals in the caring role may begin to 'revalue' themselves and that couples can find facing the illness experience together brings them closer to one another. Furthermore, some caregivers have also reported feelings of pride in developing increased patience and an ability to forfeit or delay their own personal needs. Improve communication skills. It is important to recognize that each spouse may be impacted differently in terms of their emotional response to the illness. Understanding each other helps to bring you closer. Sometimes couples need assistance in order to discuss concerns with each other and realize that they possibly hold contrasting beliefs about how the illness impacts their life. Address intimacy issues. It is also important for couples to make time for affection and intimacy, this may mean going out on a date, or simply spending a few minutes together each day. It is important for couples to define their individual intimacy needs. Intimacy may be defined broadly, which includes intellectual, spiritual, and recreational intimacy as well as sexual intimacy. Establishing clear boundaries within the caregiving relationships that ensures custodial care does not hinder sexual intimacy may be beneficial (i.e. establishing which specific caregiving tasks might be best taken care of by an outside person). Discussing physical intimacy in relation to the physical illness and or disability is also important. Education regarding the implications of the disabling condition, particularly regarding issues of sexuality, may need to be considered. Education can include suggestions about adaptive devices and equipment as well as help in attitudinal change to aid couples in redefining sexuality in broader terms. A counselor may be helpful in addressing intimacy issues. Employ coping skills. Preventive strategies are needed to address issues that can potentially harm the relationship over time. It is useful to conduct an evaluation of existing coping strategies in terms of determining effective and ineffective strategies. Strategies that are identified as successful may need re-working due to changes in the relationship from illness or other family stressors. Some researchers suggest that couples who utilize more similar coping strategies may be most successful and suggest that couples examine their coping efforts for similarities and differences, and look for instances of ineffective coping strategies. A counsellor can help with this and also help couples generate new ways of coping that they have not considered. Three coping techniques cited by Gordon and Perrone include positive reappraisal (reframing a situation in a manner which emphasizes positive aspects), problem-focused coping (taking action towards resolution of a specific problem), and finding meaning through positive events (journaling about positive events).

How important is it that I write a personal directive?

It is very important to write a personal directive because it gives you a legal avenue to express your wishes regarding your care if you become incapacitated. It allows you to name a decision-maker, called an agent, should you no longer be able to make decisions for yourself. Your agent has the legal ability to make decisions on your behalf about your health care, where you live, your appearance and grooming, your diet and much more. A personal directive can help avoid lengthy and bitter family and legal arguments should your family disagree on how you are to be cared for. Relatives and family do not have automatic legal right to make decisions for you, although in many instances, medical personnel will seek direction from them. You do not need a lawyer to make a personal directive. The Personal Directive, which can be hand written, must be signed by the writer and a witness.