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I'm sure this osprey family, glimpsed on our August vacation, lives a life of more certainty than the average Alzheimer Spouse.

Posted on August 12, 2011 by

Are you an Alzheimer Spouse?

You might remember a time when you’d wake up in the morning and say “aah…” The day was looking pretty good, and you were more or less (depending on the day) ready for it. Sure, some days were a hassle, and not everything went smoothly, but the world seemed a semi-secure, generally pleasant place to hang out for four-fifths of a century or so.

Maybe you don’t say “aah” anymore, maybe instead you say “oh.” I’m an Alzheimer Spouse, and that seems to be my typical sentiment when I wake to find that another day has presented itself.

This is not the club I particularly want to be in. I have much more patience with the “aah” crowd. The folks that say any day you wake up is a good day. The positive kids. The optimists. The non-whiners.

But among the things I’ve learned since being recruited for this expedition into the Land of the Long Goodbye is that no matter how many smiley faces you affixed to your headlamp as you accepted your calling and marched in, life with an Alzheimer’s-stricken spouse is a life of disquietude.

It is a time of exile from anything that feels like home. It’s a piece of barren real estate that’s scrubby and dry, and not much grows, and you will probably never like it here very much. So what is a member of the keep-your-sunnyside-up guild supposed to do with such a landscape?

Okay…wait a minute…you thought I was going to answer my own question, didn’t you? I should be able to, I’m sure of it. I am, after all, a firm believer in attitude being a facet of life we can readjust when the need arise.

But I’ve got a problem called “flat out of ideas.” Good ideas, that is. I do have a general protocol though, and I’ll be glad to share it. It starts with putting one foot in front of the other (cue a goofy song from one of those 70s claymation Christmas specials.) Once you’ve got that down pat, the next step is to give yourself some slack. If you want a Chipotle burrito for lunch, get a Chipotle burrito for lunch. If you aren’t feeling productive, have an unproductive day and forgive yourself for it. Find a good online support group, and frequent it. Frequently. Assess your situation periodically. Do you need to escape for a bit? Would a little help help? Get some. Escape for a bit. Oh, and have tea if you like tea.

Tea making is just one of those rituals that can ground the most emotionally muddled of us.

Yeah, I know. You were hoping for better. Me too. But “managing, with a side order of unsettledness” seems to be the standard-issue menu option in the life of Alzheimer’s spousal caregiving. But perhaps you’ve got a jar of ideas I haven’t sprinkled on yet. Let’s share them!

(editorial break in commentary: I abandoned this post for about 3 weeks and have just gotten back to it.) Turns out, I’m not always so good at taking my own advice. Specifically, I need to “escape for a bit,” and engage a helper-companion. I have not done these things yet. This, I tell myself, is because August has been a very busy month, (family vacation, launching the college crowd,) and I need to wrap up a little domestic engineering before I can proceed. So now I have to follow the suggestion two paragraphs up where I give myself some slack. There’s a fine balance though-too much slack and I feel like a slacker. I’ll let you know how it’s going next month.

COMMENTS

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JVoyageur

August 12, 2011 at 5:36 pm

I am flat out of ideas too. I’m caring for my mom who obstinately declares that she’s perfectly fine and can take care of herself, the house and bills (she can’t). She told me today to back off and that she can walk 1.5 miles to the grocery store anytime she wants to and we shouldn’t worry about the possibility of wandering.

How the blazing hell do I deal with this? It’s clear she has Alzheimer’s Disease and she denies it(she’s been diagnosed). It’s a big obstacle to my helping her or even getting relief for me, like home health care (light cleaning etc). She’s toss them out on their bums.

I’m exhausted, flummoxed and plain out of ideas too.

Linda Janes

August 14, 2011 at 11:13 am

Emily,
Oh do I know what you say is true. I too am the happy face person that tries to make the best of every situation. The HARDEST part is cutting myself the slack. I tell myself that if I want to have a burrito I’ll have one. My blood work says, DON’T DO IT! My Dr. says watch DIET and EXERCISE. Does doing all the outside yard work count as exercise? Does keeping up with a very mobile Alzheimer Spouse count as exercise?
I FINALLY said, “enough is enough” and got an awesome caregiver to come in a few hours on weekends so I can at LEAST go to the grocery without much stress. Treat yourself, and get out, if only to wander the library, mall or grocery store without a sidekick. You’ll like it!
Thanks for your blogs. I truly enjoy your thoughts!
Linda

Scott

August 15, 2011 at 10:28 pm

I was part of a caregiving team for over 10 years for my mom before we lost her in February, 2010. A caregivers path is so challenging and thankless. I remember in the early years we hoped medicine would slow the process and give us more time, but the more we learned, the more we realized that mom’s decline would continue and we had to learn how to care for her.

My mom would get so confused and frustrated and it would quickly turn into arguments because of her fight to maintain her independence. We had to learn to redirect her just as we would if dealing with a child. It was hard to accept, but necessary.

There were times I would have to say, mom I love you, but we are going to do this my way. She usually did not resist much initially, but as the disease progressed it got more difficult to reason with her at all.

There are care groups out there and I encourage you to read some of the information, go to some meetings, and get some help so you can take breaks. I recently attended a caregivers workshop and found some good information.

I blog about that meeting and offer some caregiver links at http://www.memoryofmom.com. It is a long hard road, so get help, keep stress low, and take care of yourself.

scott

Ruth

August 27, 2011 at 11:51 pm

Putting one foot in front of the other is the only idea I have at the moment also…but some days are harder than others. I’ve cared for a parent-in-law with Alzheimer’s, but that didn’t prepare me for caring for my husband.

Louis Turnbull

December 28, 2011 at 9:06 am

Caretaker for my wife who has Alzheimers, for about 5 years. The last 2 + years have been pretty bad, she has exhibited symptoms of severe stage for most of the 2 years. Most difficult is shadowing,follows me every step i take or constantly ask where I am if she can’t see me, example if i am in the next room. Will not stay with someone else without becoming angry & aggressive, gave up up adult day care, because of the aggressiveness. Now leave her with a family member for about 2 hrs. While I attend monthly support meeting or for haircut, otherwise I am with her 24/7. Thanks for the chance to let off a little frustration.

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