Communion Of Dreams


Fear. And failure.
August 30, 2011, 9:53 am
Filed under: Alzheimer's, Failure, Publishing, Writing stuff

I posted something on my Facebook profile yesterday, which got a response from someone who had cared for her parents until their deaths. Basically, she was afraid of revisiting being a care-provider by reading Her Final Year – afraid that it would confirm her fear of having been a poor care-giver.

This – *exactly this* – is one of the biggest reasons that I think that Her Final Year can be helpful even for people who are no longer care-givers. Because it shows us making mistakes, failing to do this or that right, learning only too late (or almost too late) that we should have done something differently. From the homepage for the book:

Much of the material in the book is intensely personal, even embarrassing. We have decided to share it ‘warts and all’ because that is the reality of being a long-term care-provider for someone with dementia. You will make mistakes. You will sometimes feel crushed by the isolation and stress. You will get into arguments with family and friends, and even say or do things that you later regret. You will occasionally resent, or even hate, the person for whom you are caring. We did. It’s completely normal, but seeing how others experience these things can be very helpful.

Back in February of 2008, I wrote this:

I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less – that they cared less.

No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.

I will not judge another – this experience has taught me humility.

That was very early in my recovery, less than a month after Martha Sr died. As I got further away from having been a care-provider, I came to see more the mistakes that we *did* make. And I came more to understand that I had to accept those mistakes, those failures, and forgive them.

Putting together Her Final Year was part of that process for me. If you read the book, you will see those mistakes. But hopefully, you will also understand them. Because that is all part of the process of being a care-provider. Just as it is part of being human.

Jim Downey

(Cross posted from the HFY blog.)

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