As they watch their loved ones slip away, nearly 40 per cent of family members taking care of a person with dementia are suffering from signs of distress like depression, rage and an inability to cope. With stress on family members growing as symptoms progress, at what point is right to move your loved one into long-term care facility?
The Globe held a discussion on this issue with Linda Jackson, lead social worker at Baycrest who organizes caretaking support groups, and Donna Macdiarmid, who recently put her husband, Roger, in a home despite being "a woman in love."
A transcript of that discussion follows:
The Globe and Mail: Welcome to the discussion everyone. Joining us are our guests, Linda Jackson and Donna Macdiarmid. Linda is the lead social worker at Baycrest, a Toronto health-care facility that specializes in care of the elderly. Donna recently had to put her husband, Roger, in a home.
Donna Macdiarmid: Hello, it's Donna from New Brunswick
Linda Jackson: I am also very pleased to join the discussion. The comments to date are so very reflective of the issues facing caregivers.
André Picard: This is André Picard from The Globe and Mail. Thank you Donna for joining us and thank you for sharing your story. And thanks to Linda for being here too.
The Globe and Mail: Let's launch right into some reader comments. Here are a few now.
BobBob: I don't suppose there is such a thing as 'the right time' to put someone into care so I'd like to look at the situation from the point of view of the caregiver who has had one heart attack and visits a chiropractor on a regular basis to maintain a bad back. If I succumb, there's no option but for my wife to go into an institution since our only child lives in another province and we do not expect her to give up her home and career to look after her mother.
Linda Jackson: Comments from Bob refleact the reality of many caregivers who are worried about their loved ones and must also care for them selves.
stephenstephen: My Mother in Law has reached the point where 50% of the time she is unmanageable with mania and 50% of the time she is the old "Mom" albeit subdued. If she was 100% unmanageable the decision for care would be easier. Instead they are left with all this guilt about the "good times" when she need not be in care but is. Thoughts?
Donna Macdiarmid: I know it is a difficult thing to do, but long term care is not something to be afraid of. Roger and I still have a beautiful relationship and are together every day.
Linda Jackson: After working with caregivers for many years I have come to the conclusion that there are not a lot of easy answers. Caregivers often struggle with their desire to follow the wishes of their loved ones, while also recognizing that this may not always be possible or feasible. Having a good network of supports is essential
André Picard: In the reaction to our stories, there is a lot of fear expressed about what awaits people in the future - especially having to make the decision to place a loved one in an institution for care. But the people like Donna who are living the situation seem much more positive. How should people prepare for their caregiving duties.
Donna Macdiarmid: Stephen - guilt is a waste of time. I was there but now am past it. There will still be lots of good times, even in the long term care facility.
Linda Jackson: I believe that caregivers have times when they may feel great guilt and depair and other times when they feel very staisfied with their role. Caregivers need to be supported in having these mixed emotions.
The Globe and Mail: Donna: is there any specific advice you could give to Stephen about overcoming his feelings of guilt?
Linda Jackson: One way to offset the guilt and despair may be to connect with others in similiar situations and also to engage friends and families as much as possible in supporting you in your role. Did you have this kind of support Donna?
Donna Macdiarmid: Your responsibility as a caregiver doesn NOT end when you place a loved one in a nursing home. You will still stay very involved but you will have more quality time, more time to just sit and be together. I felt guilty for a long time, Stephen, but I have learned that the nursing home setting is best for an Alzheimer patient. He is receiving stimulation, lots of people stopping to talk to him, to take his hand when they walk by, give him a hug. He is involved as much as possible in the activities which take place in the nursing home. This type of environmental enrichment is so good for him - could I possible have give him this at home? The answer is no.
carolcarol: My mother in law refuses to seek any help-she is embarassed that she has this illness. My father in law is getting burned out. What suggestions do you have for approaching her to let us get support. Should we go through the doctor? Thank-you
Donna Macdiarmid: Yes Linda, that is correct. The only people who really understand are the people who are going thru it. I have been attending the Alzheimer Caregiver support group meetings for over 10 years now. Friends and family mean well but just don't really understand.
Linda Jackson: Hi Carol. This is a very common issue that you are raising. I would try to find a supportive approach to bringing both or your parents to see a doctor or to connect with a community support agency. You could enlist your mother as a support for your father as a first step. Once connected the MD or another provider would understand your mothers feelings.
Linda Jackson: Recent research has indicated that support groups can be a wonderful resource for caregivers, and there are many such groups that are running across the Country. The Alzheimers Societies are a great first contact .
André Picard: We have an e-mail from a reader who wonders: I hate the idea of putting my Mom is a home. Is nursing home care inevitable or can I care her at home until the bitter end?
Donna Macdiarmid: Carol, I did't face this with Roger as he didn't seem to go thru the denial thing. I think in time this will work itself out but Linda's suggestion is a good one. Is there any way you could get her to attend a support group by convincing her that it would help your father?
The Globe and Mail: Does anyone have any thoughts on André's question?
Linda Jackson: More people are cared for at home than in nursing homes. However let me be clear that for some people this is the right choice at a certain time. To be successful caregivers usually need to enlist the support of local home support providers, who can provide professional services, and respite for the caregiver in the home.
Donna Macdiarmid: Andre, Sometimes care at home is possible until the end depending upon the physical and emotional strength of the caregiver and the support system available. This will probably require personal care workers to help out as the disease progresses and can become very very expensive even if the resource is available. It is difficult to predict what you can do - when the time comes you will know. Sometimes we cannot plan - we just do the care at home thing as long a possible. As I said before, it would not be possible for me to give Roger (at home) the kind of care and social stimulation he is receiving in a nursing home setting
marymary: I'm concerned about the possibility that my father may need care quite quickly...for the moment all is ok and my parents have in-home support but I'm thinking that it may not be too early to plan ahead in case his situation deteriorates quickly. Do you have any advice or comments regarding how far in advance one can/should plan for nursing home care? I don't want to seem like we are rushing it but we want to be prepared and not have to make hurried decisions when the time comes.
Linda Jackson: In most provinces people cannot technically apply for a nursing home until the person meets the criteria for admission, BUT, this should not stop families from starting to review the resources that are available and discuss the kind of environment that would be most supportive to a given individual. All nursing home will provide tours and should be willing to talk to families. Sometimes the thought of a nursing home is much more frightening than the actual facility itself.
Linda Jackson: It is also wise for families to be really familiar with the processes for making an application. Many people are so frightened about the thought of a nursing home that they avoid the conversation until a crisis hits.
André Picard: But why do nursing homes have such a frightening reputation? Donna, for example, seems to have high praise for her nursing home?
Donna Macdiarmid: Mary, I felt the same way. Here in New Brunswick, we have to chose three possible nursing homes in order of preference. Then in order to be admitted, your father would have to go through an assessment process. This really cannot be done until you have made the decision to actually place him. One thing you could do is visit the nursing home facilities in your area and think about what your oder of preference would be.
Before I get my answer out, Linda has it done! Guess I am too slow! Linda is correct.
Don't be frightened, Mary, start visiting nursing homes; I have learned from a year and a half of daily exposure, nursing homes are wonderful - we have a whole new network of friends who have become our family.
Linda Jackson: Andre , I believe in general we hear much more about any incidents that occurs and the challenges in a nursing home and that we don't hear from people like Donna who have had a positive experience in a nursing home. I know a lot of caregivers that share Donna's impressions that a nursing home can be the best place for some one with extensive care needs. I also note that the caregiver role does not end when some one moves to a home. Donna, I am glad we agree on the benefits of researching nursing homes well in advance.
The Globe and Mail: On the subject of nursing home reputations, here's an interesting comment from one of our readers:
SandiSandi: The concept of a "home" is viewed so poorly by many. I would like people to consider the possibility that a home can represent a safe and comfortable place to be when a loved one is affected by dementia. When we make decisions driven by guilt they aren't about what is best for our loved ones. My mother-ln-law is now in the hospital with has had 2 falls and is now battling an infection. A strategy to get her to a home may have prevented this very painful situation. She is so confused, physically restrained and not recovering. Our concern is now for her life, not her lifestyle.
Donna Macdiarmid: Andre, yes I have praise for nursing homes although I can't speak for them all. From talking to people in my support group here I have heard nothing but good. The nurses and personal care workers in the facility where my husband now lives are wonderful, kind, caring people and you know what - angels go to work in all nursing homes 24/7. I feel very strongly, however, that families need to be involved, need to visit often, need to get to know the staff and let the staff get to know them. You have to help the staff get to know this person who can't always speak for himself/herself. I don't have a lot of good to say about people who "drop their loved one off at the front door" and walk away.
Linda Jackson: Sandi, your comments are well taken. Caregiving is a journey. In the early days often people need information and education, most people will qualify for some form of community support and many families do a wonderful job caregiving. Some times though it is in the best interest of all to open our minds to residential settings, for either a short period of time or at the latter part of the journey. Families need support regarding the emotional and physical toil of caregiving , and whether thie means support in the home or support in a nursing home, family caregivers need to be supported in recognizing their own needs.
Donna Macdiarmid: Sandi, great comment. Sometimes we have to stop thinking about grief and feeling sorry for ourselves because we have to deal with it. Sometimes we have to do the unselfish thing and do what we think is best for our loved one.
joanjoan: Can you give us advise about nursing homes? About what you looked for, in choosing one? Do they all have the level of interaction that the person needs?
The Globe and Mail: Does anyone have any advice for Joan?
Donna Macdiarmid: Joan, Some of the things I considered were:
1. Distance for me to travel as I knew I would want to be there often
2. Which ones came highly recommended by my Alzheimer famil
3. My preference for a smaller setting - not so much like an institution
4. What activities were offered for stimulation, etc.
5. What kind of food would be served - didn't want it to be like hospital food - wanted it to be prepared on site.
6. Wanted a homey atmosphere.
Linda Jackson: Nursing homes are very highly regulated and have consistent standards that they are expected to be in compliance with. What is different in nursing homes is the culture. I would meet with staff and talk with them about the staff/ family and resident interactions. Is their special programs that enhance the quality of life of the residents ( pet programs , intergenerational programs, music). What does the physical enviroment look like. Are there private spaces for families to gather? Is there a family council and resident council. Are they acitve? Has there been lots of complaints? Is there access to outdoor spaces. These are some things I would look for
André Picard: Linda, a recent study showed that 40 per cent of people caring for a loved one with dementia suffered "distress" such as depression and feeling of powerlessness. Can you comment on the importance of caregivers taking care with their own health (mental and physical), as well as carring for their loved ones.
Donna Macdiarmid: Linda, I totally agree. I forgot the importance of family gathering spaces and outdoor spaces. Both very important as is music. It is so remarkable to see the residents' response to music - with eveything from classical, to hymns to "hoe down" music.
Linda Jackson: This is so critical Andre and very difficult for many caregivers to accept. Caregivers are at risk of depression and other health issues. My biggest recommendation is to recognize the importance of not caregiving in isolation. Reach out to your local community support agency, your family, other caregivers and do not feel badly taking some assistance. Groups and respite and day programs have been proven to lengthen the time caregivers can manage in their role.
The Globe and Mail: We're nearing the end of our discussion, so André's last question will be the final one. Linda and Donna, if you want to provide your answers to André's question, and then give any final thoughts you might have, that'd be great.
Donna Macdiarmid: Linda, respite and day programs work well if your loved one will agree to go. I found that Roger wanted me to be glued to his side all the time; his confidence level was so diminished that he seemed afraid to go. Just an observation.
The Globe and Mail: Any final thoughts?
Linda Jackson: It is wonderful to start this discussion, knowing that there will be many more caregivers in the future. My best recommendation is to think about the best supports that are available for your own situation and be OK asking for this assistance . More people will be cared for at home so we need major changes to support caregiving in the community.
Donna Macdiarmid: Great discussion. Thanks for including me. Like to meet you, Linda.
Linda Jackson: me too Donna, I was inspired by your love story and strength, Linda
Donna Macdiarmid: Thanks a lot. My love story has not ended!
The Globe and Mail: Thanks very much to everyone who participated in today's discussion. Look for another discussion as part of The Globe's Dementia: Confronting the Crisis series tomorrow at 1 p.m
Dementia: Confronting the crisis
The problem, the patients and an action plan
Frauds and feuds: Dementia's open invitation to greed.
International Alzheimer's Day
Caregivers' burden: Patients aren't the only victims
Brain games: Why crossword puzzles don't really help
Early diagnosis: Would you want to know?
Signs of hope: The hunt for a cure isn't a complete disaster
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