Posted on September 28, 2011 by

The Murky Spyglass, or: Can “After” start Now?

At some point in the Alzheimer’s spousing game you have to figure out a way to start worming your way back into life.

Recently, another caregiving spouse on the Alzheimer’s Spouse message board which I frequent wondered how to do this. What steps might she begin to take to re-establish threads of a life beyond the immersion experience of spousal caregiver?

The use of the word “threads” here is especially appropriate, given that any time not spent “on duty” is likely to be rare and circumscribed at best. In fact, those of us who have found that life circumstances make full-time caregiving our clearest play reserve a smidge of envy for those who, for personal or financial reasons, keep a foot in the world of the gainfully employed.

Let me be clear on this: There are plenty of Alzheimer’s spouses who are caught between a rock and a hard place when it comes to work and caregiving. Remaining in the work force can be an undeniable necessity, and affording professional help can be an out-of-reach luxury, and when these two factors overlap you get the logistically impossible reality of too many real people. So, you might call me lucky. I have the option of staying home with my spouse.

But I’ll tell you what…it’s a vista from which you may try to gaze at the horizon, but you’re not going to see much. You know there is a horizon. You know your ship is statistically likely to cross the latitudinal line into “singleness” before it sinks, but you cannot imagine whether that territory has any use for you. Maybe, in that world, you’ll be a drifting anomaly. At least in Alz-world, you’ve got a clear-cut function, even if it’s threading someone’s legs into his jeans every morning.

I guess the question my fellow Alzheimer’s Spouse was asking, about whether she can do anything to begin re-establishing her post-caregiver life while her husband is living, is not unlike the challenge faced by any adult who finds him or herself in a new place without long-established connections. Surely some of the same guidelines apply. Take a class, volunteer for something, go on a trip, get a job (if you can.)

It’s a truism about life in general, and no less so about life as a caregiving spouse: balance is key. You get bonus points for all connections and activities you can manage to maintain while doing the AlzSpouse thing. At the same time, I find you have to give in a little.

Iris Krasnow, who lives in my part of the world, has written a batch of books with titles like “Surrendering to Motherhood” and “Surrendering to Marriage.” Frankly, I have not read one of them. No offense to Iris intended (and I’m probably EXACTLY the audience she needs to reach,) but I have a gut-level problem with the title of these books. Instinctively, I resist surrendering to anything. So I have to be very clear with myself about exactly what I mean when I suggest “giving in a little.”

Do I mean acceptance? (A concept Alzheimer’s spouses struggle long and hard with.) Maybe I do, a little. And maybe I mean just having a little faith (whatever the term means to you) in the adventure of life. When we disembark from the caregiving ship we’ll be somewhere. I’m sure we’ll figure out what to do once we’ve explored the turf a little.

In the meantime, at least the food on this boat isn’t too bad, and they’ve got clean bathrooms.

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  • Linda Janes said:

    "Emily, I so enjoy your posts. This one hit home... I too am struggling to stay connected. It is a sneaky process, seemingly, the becoming isolated and out of the loop. Good luck with your attempts to stay connected. You are doing a great thing with your writing. Linda".

  • Emily Clement said:

    "Thanks Scott...I understand the slow process feeling well. Good luck to your dad and family.".

  • Scott said:

    "Emily, My mom passed away last year after over 10 years with Alzheimer's. My dad was able to keep her home for most of her illness, but he was diagnosed with Lymphoma and unable to care for her the last few months of her life. I have met many caregivers and all seem to grapple with having a life outside of caregiving. They become isolated to various degrees and struggle with staying connected. Dad is in his early 70s, cancer free, and healthy, but has yet to reconnect outside the family. We are trying to encourage him to take a cruise or something, but he just says it is a slow process for him. He is working part time, for fun and not need, but he is finding it hard to get back into life socially. I will pass your article to him for encouragement. I wish you all the best as you continue to care for Jeff. Scott".

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