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?