652. Small Lights on Stormy Nights

The Art of Caregiving has a powerful and moving post about the 7 steps you go through when having a loved one with dementia and having to care for them.

I would like to share with you the conclusion of the post, which really was a hard one to read:

Stage Seven … Wife has now crossed over into full caregiver because husband has become incapable of understanding most things. Wife is able to manage his television viewing habits so as to have him watch for the most part, good movies and reruns of shows like I Love Lucy. Husband is now completely unable to play a family game. Husband has times of psychotic type behavior where he, in agitation, tries to escape. Will walk down the street and not want to come back. Wife has needed to call the police to come help with this problem. Husband does not wash himself even if he is in the shower and will put on the same dirty clothes afterward. Husband sleeps in his clothing. Husband cannot at times find the bathroom though there is a label on the door. Cannot find where his bedroom is. Husband will want to eat though he just ate a full meal. (3 years… and counting).

So, for me it was not wife OR caregiver. It is wife has BECOME caregiver.

But then the author adds something very important:

It is not just a war of words, though. Tomorrow I plan to discuss how defining myself as caregiver has helped me.

Is every little thing gonna be owlright? What do you think?

My answer in the comments was this:

I can only imagine what it must feel like to go through those 7 steps. I worked as a helper for disabled persons for 20 years, but it is not quite the same. You get an experience with what it’s like to live with someone who is ill and can never be the same – in a number of ways (dementia, ALS, all sorts of physical and/or mental conditions that may or may not be progressive). But it is not a lived experience.

That being said, I have had my share of illness and death in my own family and in my own life. And I have found that my ability to accept something really heavy and dark, especially if it appears chronic is easier when you realize that in order to get some of good life anyway, you have to muster what resources you can to balance that experience.

On a very basic level you have to figure out how to focus on what is good in life, separate from the illness, or what the silver lining is about the illness – or both, preferably.

Not to deny the reality of the days when you just want to quit, but to give you energy to move through those days.

That’s the short answer I have found to those ‘owl-questions’ that come up again and again as we grow older and which (I hope) does not sound like a platitude. I feel there is a longer answer, though, but it is more personal for each of us and requires a long time of both lived experience and reflection.

It is about what meaning it has given our lives that things turned out the way it did, despite the heaviness of it all on many days.

But that is, as said, a very personal answer and sometimes not even possible to put quite into words.

*

I’m not sure there are any easy answers to life’s heavy questions – like how to face serious illness, for yourself or a loved one.

I feel that the people who indicate they have easy answers either don’t know what they are talking about or have something to sell – whether a course in how to-get-everything-you-want-in-life or a religion.

That does not mean there are no answers, though.

Only that for the heavy and dark days in life, it takes time and patience to find answers, because it is like looking for small lights on a stormy night.

But they are there.

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