The Mistaken Goals of Caregivers

The Mistaken Goals of Caregivers

How do caregivers define success?

In a recent interview, author Louise Penny said of her husband, a doctor who now suffers from dementia, “I only want him safe, healthy and happy.”

The problem is that ‘safe’ means restricting the person from doing things they can no longer manage. Dementia may already be causing frustration, depression, anger, and sometimes aggression towards their caregiver. Adding in such restriction can only exacerbate the situation. As a result, ‘happy’ goes by the wayside. Without the peace that comes from happiness, or at least general contentment, health is often impacted as well.

‘Safe’ seems to be the only condition a caregiver can control, but are the repercussions worth it?

When Mom was in Assisted Living, my brother and I were called in by the manager.

“Your mother is going to the bank across the street and taking out large amounts of cash. She carries it loose in her purse, and walks up and down Whyte Avenue that way. It’s not safe!”

Caregiver, Dementia, Elder AbuseMom always took out $2000 in cash to manage her household bills. Memory was driving her to carry on this practice. If we tried to restrict her, she wouldn’t understand. She would, however, find reference to financial elder abuse in her brain, something she’d read up on a lot when her dementia took her into a paranoid stage. Past experience told us that if we interfered, Mom would become obsessed with how to report us. Trust would be lost, and she would refuse our help.

We decided, rightly or wrongly, not to interfere. I trusted that God could keep her safe. A few months later her dementia had progressed to where she could no longer manage the process of navigating the way to the bank. In the meantime, she was able to carry on as her brain demanded.

What do you think? Is the expectation of a “safe, healthy and happy” recipient a reasonable measure of success for a caregiver? If not, what should the goal of the caregiver be?

When the Bough Breaks

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3 Comments

Sally Devereux

about 3 years ago

Bobbi, I have been through these challenging experiences with my husband. Mostly, I have allowed and encouraged him to try things that scared me but did not worry him. Knowing that my judgment was better than his left me anxious at times. However, life let us know when something was too much: his forgetting things on the bus, winter making any amount of walking too risky or slow; and, his inability to remember whether a program was running or cancelled. Basically, I allowed him to do anything till he failed. This covered things like emptying the dishwasher and loading it. He would get clean and dirty dishes mixed up. At that point, I asked him to stop 'helping' in the kitchen. Happiness is a totally different topic than allowing him to try things till they no longer were possible. My husband would be happy to stay at home and do nothing and deteriorate mentally and physically. He was NOT happy to go to daycare. He states that he is going for me. I know that daycare is much better for him which in my mind overrides his 'happiness'. He will get used to it and already I see improvements in his functioning and he does not seem unhappy. I am very happy!!! Yeah!

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Bobbi

about 3 years ago

I'm encouraged to hear such a positive outcome resulting from you,the caregiver, putting your foot down and doing what you knew was right for both of you, Sally. (And I know you agonized over the decision. Not easy!) In this case, you overrode any semblance of partnership and insisted he take advantage of a third day a week at the day program. You knew this would be best for him because it would be best for you! And it's making for happiness for both of you. This is my point to the Dementia Strategy committee. If health services will be proactive in supporting the caregiver-recipient relationship so both are being served, then people can remain in the community much longer. Our medical model is all about reaction, though, rather than pro-action. Work remains to be done, but I'm still smiling at your positive report. Way to go, Sally!

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Sally Devereux

about 3 years ago

I couldn't agree with you more, Bobbi! I hope that the Dementia strategy committee listens to you - and I am happy to help!

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