Tag Archives: Alzheimer’s Caregiver identity

Alzheimer’s Drip by Drip by Drip

 

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Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.

Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:

The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.

It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.

At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….

P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region&region=bottom-well&WT.nav=bottom-well

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What Is Normal Anyway?

people_in_the_park_204264 Is this the couple  Ralph and I are becoming? Jaunty hats and sensible shoes? Would it be so bad if we were them? Don’t they  look  happy and normal? But what is normal?

As I look at the life Ralph and I share now, I can’t help wondering.

When he was first diagnosed with relatively advanced Mild Cognitive Impairment, Ralph was in his mid-sixties and considered young to be jumping on the Alzheimer’s escalator. Now he is approaching 70 and those  symptoms—fogginess, lack of energy, loss of short-term memory, disengagement—that seemed so out of keeping with our peers a few years ago fall more comfortably into the gray area called “the aging process.”

And after all aging  is normal and even desirable  (the alternative being death) although it hits us each differently. For example, I called Ralph’s oldest friend the other day; the two have drifted out of touch over the years but Ralph still talks affectionately about Jim and I thought reconnecting  and reminiscing would be nice for them both to do while Ralph still can. Jim was excited at the prospect of re-connecting with Ralph but we couldn’t actually talk until  he put in his special hearing aid for phone use.

In that moment it occurred to me as it has before that while Ralph remains on his plateau of not-quite-Alzheimer’s-yet, his issues are not radically different from other men his age, at least according to what I hear from the women my age who live with them. So many of my friends complain that their husbands are slowing down faster than they are, that they no longer want to travel, that they’re becoming stay-at-homes, that they are more passive than they used to be, that they need to be cared for, that they require a lot of patience.

And we women have our own issues, or at least I do. The sleep issue—never more than six hours and often less, with the resulting sense of dull tiredness and desire for an afternoon nap. A nap for God’s sake! Ugh. The driving issue—is my driving getting worse or am I just more nervous? The concentration issue—much harder to turn off the wifi and buckle down (although maybe this problem will go away after election day). And of course the fashion issue—not that I ever dressed fashionably or learned to use make up but nowI either look as if I’m trying too hard or not hard enough.

The thing is, I still do feel younger, still want to fight aging, while Ralph has embraced it. Our day-to-day life has fallen into a frankly pretty comfortable pattern set largely by Ralph’s needs and wants. The pattern scares me because I find it enticingly easy to fill so much time dealing with minutia concerning managing Ralph’s care, our finances and our household, especially since my social life has actually expanded as Ralph’s has contracted. If this is this my new normal, it is not all bad? But I worry, where is my zest for the intellectual and creative ambitions that have always defined me before?

In a weird way I am almost heartened personally by the current election season in which two of my peers slug it out with vigorous, and in one case even brutal, energy (although I’m not saying their “normal” is the one I want). I want to believe I can still find that kind of passion and energy in myself. But maybe not, and maybe that’s okay.

Sorting out what is normal under my circumstances, or what is normal under any individual’s individual circumstances, is not easy, but it is where I find myself.

(PS. Last nightI asked Ralph, as I always do, if he’d talked to anyone during the day. He said no. I checked his phone. There was Jim’s number at the top of received calls; evidently they’d talked for over half an hour.)

Alice Has a Pity Party

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When friends compliment me for being patient and nurturing toward Ralph I have to laugh. Empathy for others easy, empathy for Ralph not so much.

Especially today. Maybe I can blame the bad cold I’ve come down with, but I feel like griping. I don’t blame you if you don’t feel like sharing my self-pity party, and if that’s the case, you might want to stop reading now.

I just spent the morning re-ordering his meds, which never arrived last week. I ordered refills weeks ago and have assumed they were on the way but when I went to feel his weekly box, I realized they still haven’t come and we are getting dangerously low. Evidently Ralph removed the post office’s post-it note without telling me I needed to pick up a package. The package got returned, we’re down to less than a week of some meds and I was on the phone with the mail order pharmacy working out how to get his meds for half an hour. In the old days, I would have yelled at Ralph for forgetting to tell me because he wasn’t paying attention, but how can I now, knowing it’s not his fault.

Then I re-organized the clothes in Ralph’s closet yet again. One of the more recent hints of slippage has been sartorial. He was never a snazzy dresser, but he was vain about his admittedly good looks. Now whatever is closest at hand is what he puts on. I no longer bother reminding him about the separation between work and dress clothes, but I do try to steer him in the right direction, mostly by having fewer choices visibly available.

Then I dug out a few Natty Lites from my secret hiding place and put them in the fridge for later this afternoon. Ralph more or less accepts this system for limiting his daily alcohol consumption although he’s remarkably able to find my hiding places, his memory and sense of direction still acute where beer and cigarettes are concerned.

This is all so trivial, and I know others’ problems concerning Alzheimer’s, not to mention poverty, hunger, war, are much worse. But I have noticed that managing these silly daily tasks with their subtle reminder of something amiss, something out of balance, sometimes drains more energy and patience  than dealing with Ralph himself. Or that after taking responsibility for the practical details of Ralph’s life, my patience for dealing with the man himself is compromised.

But as I said, I have a cold.

So I’m off to make myself tea and toast and pretend I have someone to take care of me for a little while.tea

A Benefit of Ralph’s Cognitive Impairment–My Strengthened Self?

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Last week I posted information about a study concerning the impact of Alzheimer’s on women. Since then I have found myself thinking in a more deeply personal way about how I have been impacted, specifically in terms of my sense of identity as a woman.

My (even) more self-centered than usual thoughts are flowing after spending a weekend with an old college talking and eating non-stop (the eating important since the setting was New Orleans).

Jane and I explored the challenges that shaped us over the last thirty years and the directions in which we are currently evolving. We talked a lot about whom we have each become and why. It turns out that we have remained alike in many ways—our politics, our private and social ethics, our taste in food, even our TV preferences.

But there is a major dividing line: I have a husband and children. She doesn’t.

In college, despite high ambitions and avowed feminism, we shared a tendency to let men we loved take over our lives including those ambitions. (Ironically, the fact that we were at different times drawn to the same young man brought us closer as friends.)  In our twenties, we each married a charismatic if self-absorbed man with big ambitions of his own.

Then our life paths diverged.

Jane’s marriage lasted only a few years. After the divorce, she went on to have an extremely fulfilling life with an exciting career and plenty of important friendships and relationships. After Jane’s early marriage to a dominating man ended in divorce, she went on to have an extremely fulfilling life with an exciting career and plenty of important friendships and relationships. She has her regrets, but she has developed an amazingly strong individual identity, which includes confidence that she is a woman who can take care of herself. She is not certain that she could have become that woman within the confines of a marriage.

My marriage—to Ralph—has lasted and my primary identity became tied up in being a mother and a sometimes resentful wife struggling not to be overshadowed by Ralph’s powerful personality. I fought to forge my own identity, eventually publishing several books including my first novel.

But I never put my ambitions first and in our shared life, I usually let Ralph get his way in decision-making. I would rail against the decisions he made—like to move us to a farm or buy a certain car—but I always went along. And when one of Ralph’s decisions went bad, as they sometimes would, I could always think not my fault.

Jane did not have that luxury. She had to make every practical and metaphysical decision concerning her life on her own, and then she had to live with the consequences.

So now she is a woman used to making decisions for herself, used to the tension and the fear and the joy, and I am a woman learning to make those decision for myself and for Ralph.

Making decisions alone requires a mental muscle I never adequately developed and now have to exercise. Ralph no longer has any interest in making decisions. Along with memory loss, his mild cognitive impairment has caused a major personality change. He is the passive one who cheerfully, and without the resentment I used to feel or any questioning, goes along with whatever I say.

I am not downplaying the reality of Ralph’s cognitive impairment and its negative aspects. But learning to cope with Ralph’s condition has created a potential for growth for me as a woman. It is scary and intimidating to be the decider, also liberating. I am learning what Jane learned over the last thirty years: to be strong-willed, self-reliant, independent, and in charge of my own happiness.

CHANCE ENCOUNTER/MUTUAL SUPPORT

So there I was in a store at the shopping center looking for a cheap picture frame when I ran into a woman I have half-known for years. Our daughters were in school together at some point in the distant past but never actually played together. Susan and I run into each other occasionally at the grocery store. We’re always cordial when we meet and joke because we seem to have the same shopping schedule, but we barely know each other. She grew up in this small town; I’m a relative newcomer. She tall, blonde and well-mannered. I’m short, frizzy haired and socially awkward.

So after we said our usual brief hellos and asked about each other’s child, I moved down the aisle. A moment later someone called my name. I turned around and it was Susan smiling but looking slightly nervous.

She explained that she had seen my name on a group email address from a local Alzheimer’s support group I attend sporadically. For a moment I was a little shocked and almost defensive—I admit I have not quite figured out how to be totally comfortable acknowledging Ralph’s condition except to close friends—but then came the flash of recognition: She saw my name on that list because she was on it too.

We stood in that aisle for I don’t know how long, sharing our stories, commiserating, advising, laughing, and occasionally holding back tears. For two women who barely knew each other, we felt a new but very real bond and a genuine affection, not unlike what many of us care-giving bloggers feel for each other.

But this was in person. And not at a meeting of a support group, which is in some ways a time out from day-to-day life in order to focus narrowly on my caregiver identity. I certainly appreciate the lovely people I have met there, but connecting to Susan was different, a reminder of how widespread Alzheimer’s is of course, but also something larger I am not sure I can articulate. About openness, and not only openness concerning Alzheimer’s. About hoe people are always deeper and more interesting than we assume. In making facile assumptions (in my case writing off Susan as belonging to a world where I didn’t fit), opportunities for real friendship may be missed.

Susan and I parted that day promising to get together again for lunch one day. I hope we do…