Washington
DC
I’m having more of these good-days/bad-days
experiences.
Monday, evening I met with a Gettysburg College class
on homelessness that had come to Washington for some direct contact with
poverty. In preparation, they’d read Not All of Us Are
Saints, my book of stories about my providing care to the poor in
Washington. I gave them a brief lecture
on the origins of poverty in the inner city, and they had lots of
questions. After an hour and a half, the
students were flagging a bit, but I decided to tell them about my
Alzheimer's. That seemed to re-energize
everyone, and we had a good discussion.
Once again, I had no trouble in a small-group setting. It was rewarding for me and, I think, helpful
for them. I was gratified.
Then I came home to discover another of my screw-ups. We’ve been trying to get rid of bedbugs in
our apartment (long story). The last
time we’d used the vacuum cleaner was to suck up any lingering critters. Marja had wanted to throw the vacuum bag away
so that any of the bugs swept up wouldn’t escape back into the apartment. But I decided we could just take off the bag,
seal it in plastic and reuse it the next time.
Then I stored it in its usual place inside the vacuum cleaner without even
a note anywhere to remind us what I’d done.
Monday, Marja had spent much of the day scouring the apartment to get
rid of the bugs, including a fair amount of vacuuming. When I came home, I took over, only to eventually
discover the disconnected, sealed-up bag.
We’d both spent a long time vacuuming with a machine that sucked things
up but then leaked them back out again.
Unfortunately, I didn’t remember anything about what I’d
done with the bag. So I blamed Marja. She, naturally, blamed me. After a little bit of the typical
husband/wife back-and-forth, I felt angry and blurted out something like: “So
anything that happens is now automatically my fault?!!” Only gradually did I begin to remember and recognize
it was, indeed, my fault. It was
humiliating.
But, given my Alzheimer's, when something ridiculous
happens and neither of us knows why, doesn’t it make sense to assume that I was
responsible? Occasionally, of course, it
will be Marja’s fault (her memory isn’t perfect, either), but by far the
likeliest candidate is going to be me.
That’s just the reality. And that
means that I have to come to terms with it.
I would like to get to the place where I can, even in
the moment, acknowledge that I’ve probably done whatever ridiculous thing that just
happened. I would like to get to the
place where I don’t feel defensive or humiliated. Perhaps both Marja and I can get to the place
where we don’t need to waste emotional energy pinning down who did what. Perhaps we can get to the place together
where we even laugh at the ridiculousness (if it is, in fact, funny).
I think we can get there, but it will take work on
both of our parts.
Perhaps a bit off topic, but we had a luck with this DIY site on the bedbug situation: http://www.badbedbugs.com/bed-bug-dust/
ReplyDeleteI so enjoy your blog. Best of luck to you.
Marja will learn to transcend the who did what when, as will you. AD robs you of the luxury of these petty moments. Just move on.
ReplyDeleteSO happy for you that your lecture at Gettysburg College went well!! How great that must have felt to lecture, answer questions, and share with them what's going on with you, and hear what their thoughts were.
ReplyDeleteMy Dad is very open about his AD and it truly helps him & those around him when he can talk about it.
Keep striving for "laughing it off" and taking the blame, without the "poor me" attitude. I'm sure if Marja sees you doing that, it'll matter less & less who is at fault, even in the most frustrating situations. :)
Very familiar dialogue! The problem is that we think that memory will be there and forget that it won't, especially for the person with AD. Memory is a handy tool that just doesn't work well anymore. Not right now after all that fruitless hard work vacuuming and continued pestilence but soon, maybe in a month or two, the story of vacuuming the bed bugs with a carefully disconnected bag will be added to your list of funny AD stories. I hope :) Many thanks for your wonderful posts and good luck with the bugs.
ReplyDeleteAs untenable as it is, you are sliding into the abyss that we all know as Alzheimer's. I appreciate all of the signs in your writing of a high achiever, more importantly than smarts, you possess and act upon a desire to help your fellow man. My wish for all of us is that we get off our collective asses and fund a cure for reasons of humanity, rather than waiting for the realization that this disease is a tsunami of cost, gathering momentum towards the shore. Unfortunately, we as humans are again waiting to act, the siren is blaring, yet we take our time thinking it won't affect us or our family, until it hits home.
ReplyDeleteI know it is easily said by me, but don't waste enrgy (and time) focusing on anything but what time you have left and enjoy it to the max. Let go of the need to be right or worry about what you should have done, and just be in the moment.
I watched my mom, then my father-in-law be swallowed by the beast. Including the collateral damage of their caretakers, their partners. One had a stroke and the other just used himself up advocating/caring for her. This speaks nothing of the pain and loss for the children, grandchildren and others close to them.
Thanks for your courage in sharing your story. Don't be so hard on yourself!
Godspeed...
ahh..... ha... So I was supposed to get rid of the bag? Thanks for reminding me. I didn't even wrap it in plastic, but left the bag in the vacuum. And I don't think I have Alzheimer's.
ReplyDeleteI can understand how you could fee at fault though. I guess we live and learn with what ever is wrong with us. Growth, maybe.
My husband said almost the exact same thing to me in the early stages of his disease, while we were both coming to grips with it. I think the early-onset form of this disease is especially tough, because the person looks so healthy, so “normal”. We’re accustomed to making allowances for our elders, as they get more forgetful, or start losing some of their physical agility, even if they don’t have Alzheimers. But when we see a seemingly healthy 60 year-old, we try to interact with him as we would before the disease. It’s a slow adjustment for both of us, and sometimes I still forget that he forgets.
ReplyDeleteIf it makes you feel any better, many vacuums have secondary and tertiary filters which may trap the bugs. Try replacing them now, if you think it is possible that they are there and did their job.
ReplyDelete