Tag Archives: caregiving

The Business of Remembering…A Sense of Time and Identity

Alzheimer's and Relatives, Caregiver/Spouse Issues, , , , , , , , ,

“The business of remembering what you did that day, or what you might want to do the next, I think, is essential for creating an overview of your life – that overview is what fuels plan-making and that ties in deeply with identity.”

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In case you missed it, this comment was made about my last post by  Jabberwalk, who writes with great insight and honesty at her own site Caregiving in the Forest.I can’t stop mulling over the implications.

Time is the trickiest part of life for Ralph. Almost the first thing he asks each morning is what day of the week it is. Sometimes he remembers what he did or parts of what he did yesterday, sometimes he doesn’t. Often he misremembers. He doesn’t like the confusion his lousy short-term memory breeds, but he lives with it by asking for a rehash over and over hoping for clarity that seldom comes.

We all fear the loss of short-term memory, but the problem of future memory is in some ways more troubling. When Ralph looks forward to what comes next, what he seems to see is an anxiety-producing obstacle course. Since he can’t hold on to the facts of place and time, he becomes increasingly anxious each time he asks again Where? but mostly When? The issue for me becomes how much information does he need, how much is a burden.

Not only do I make the scheduling decisions, but I also end up structuring what he thinks about that schedule, and therefore what he thinks about period. In other words, I am taking away or at least shrinking his overview.

His sense of identity has certainly shrunk. Yes, he is an increasingly passionate dog lover because dogs demand so little and remember on their own. And he remains a husband, not an equal partner perhaps but genuinely grateful to his wife for filling in the blanks. He is still a father too, although his memory of the kids’ childhoods is sketchy and he keeps up less and less with their adult lives because he finds tracking the details so difficult. He was glad to let go of his professional identity and hand me that responsibility early on. While he can be charming in social encounters, his interest in friendship and being a friend is limited by his difficulty remembering who people are, their names of course but more importantly, their connection to him. While still capable of moments of remarkable perception, he is no longer interested in being an intellectual or armchair philosopher because it requires remembering a train of thought.

I remember lots of trains of thought. I carry around layers of overview based on the different roles I play—wife, writer, friend, woman, businessperson, spiritual seeker, reader, political thinker, mother (Note that caregiver is not on this quickly written list—a Freudian slip I just noticed myself).

These roles operate within and are influenced by the various ways I frame my time. There is the constant background hum of long-term, generalized plans still under construction (i.e. How much longer until we need to downsize? What are my options if/when needs professional care?). More immediately, there is the weekly erasable-board calendar that Ralph and I live by day-to-day; there is the monthly wall calendar as well as the one on my phone. And there is the semi-conscious minute-by-minute and hourly tracking most of us fold into our routine (unless we are on the Alzheimer’s continuum and struggle to remember whether we ate lunch already) without much conscious thought.

But what has always been almost second nature, like making coffee as soon as I get up in the morning, is getting more difficult. Lately I have trouble both keeping my plans organized and keeping a hold on my sense of self within those plans, largely because of the important role-identity I just caught myself forgetting to include above. Caregiver, leads to another identity: AliceasRalph.

Keeping Ralph’s life organized and reminding him what he is doing on a given day means I also remind him why and how he feels, which means I make an effort to get into his head to understand his mindset. Thus is born AliceasRalph, who often ends up as confused as he is by his confusion about whatever I am trying to explain. Our weirdly opaque discussions can sound like the old WHO’S ON FIRST comedy routine.

Ralph’s overview of his life, if not lost entirely, is definitely tangled. And because I am both Alice and AliceasRalph, my overview is pretty tangled too. Not hopelessly, but moving forward requires vigilance as I ceaselessly work to untangle the delicate filaments without breaking them.

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What Is Normal Anyway?

Caregiver/Spouse Issues, , , , , , , , , , , , , ,

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.)

My Car Is My Caregiver

Alzheimer's Spouse Issue, Caregiver/Spouse Issues, , , , , , , , , , , , ,

 

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Dear Red Prius,

My first car was a bright blue sedan that I drove to Atlanta when I was 22. I don’t remember the brand, only that I hated how visible it made me, especially since I was not the best driver.

I traded the blue bomber in for a used telephone “van” that had been refurbished by Ralph—his first entrepreneurial venture was buying and fixing  up used phone trucks, then selling them to counterculture types like me; the streets of Midtown Atlanta were full of Ralph’s trucks in the early 1970s.

The brakes went out on my van a week after I bought it. I was rounding a curve and ended up down an embankment. Fortunately I wasn’t hurt. Naturally Ralph felt terrible. He helped me fix the van and sell it.

(Actually, Ralph disputes my car history, says I got the blue bomber after the truck disaster, and he may be right. In any case I don’t remember what I drove next.)

We got married five years later, and for the next multiple decades I drove a series of practical, second-hand sedans (with baby seats), SUVs (for carpools and horse-trailering), and (once the kids were gone) compacts. They were all non-descript, aside from the dents I added, and I could care less.

A year and half ago, though, I got you,  Red Prius. I bought you for practical reasons like gas mileage and comfort, etc., and I admit that I chose your red color because you were cheaper than the silvery blue model.

The irony is that these days what I love most about you is your color. It makes you  So Visible, so easy to spot among the sea of tans, blacks, grays and whites on every road and in every parking lot.

I often find myself writing here about the difficulties, the frustrations, the borderline depression care-giving causes me. I think one of my secret worst fears is that my memory is going too. I said this to a friend recently and she laughed, “But Ralph isn’t contagious.”

Maybe not, yet I often feel as if my brain is clogged with the details of thinking for two. An adage of care-giving is that if we are tense or irritable, our cognitively impaired spouses (or parents) sense and react in kind. The flip side is that I am vulnerable to catching Ralph’s anxiety, and when I’m anxious my brain does not function at its best.

Lately I have an urge to simplify: the less I have to worry about the better. Less stuff means less stuff to keep organized and clean without Ralph’s help. Fewer commitments mean fewer complications to arrange for Ralph. But I also want to stay active and involved. Simplification can be a slippery slope that I don’t want to begin sliding down too fast.

Red Prius, you have been a godsend. It takes one item off my overloaded mental table—no more walking out of the supermarket or doctor’s office or bank or lawyer’s meeting or movie theater or restaurant or political meeting worried where I parked. One glance each way or a click of my key button and there you are, Red Prius, brightly reminding me that I am in control, at least to the best of my ability…A small comfort maybe, but it’s the small comforts that count.

So thanks for making my life better Red Prius. I promise to take care of you as well as I take care of Ralph.

Gratefully,

Alice

 

Alice Has a Pity Party

Caregiver/Spouse Issues, , , , , , ,

Mad-Hatter-Tea-Party

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?

Caregiver/Spouse Issues, , , , , , , ,

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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.

Ralph and Lola

daily life with MCI/Alzheimer's, , , , , , , , , ,

lola day 1

So we have a new puppy.

Ralph is devoted to his lab Zeus. The two of them spend most of Ralph’s waking hours together, up in Ralph’s office, where Ralph supposedly paints while Zeus dozes, out on the porch where Ralph drinks beer and smokes while Zeus dozes, or at the kitchen table where Ralph eats and reads while Zeus begs for scraps when he isn’t dozing. One reason I can’t get Ralph to go out to dinner, let alone away for a vacation, is that he doesn’t like being away from Zeus.

But Zeus is eleven, maybe older. He has epilepsy. And weighs at least 85 pounds. Big dogs don’t live as long as small ones. So for a while I have been worrying about what would/will happen when Zeus goes. We are not dog buyers usually. Our dogs have come to us through friends or through the pound or because they wondered up tagless. But given the reality of Ralph’s prognosis with Alzheimer’s, I began to think a companion dog with special skills might be in order. Plus I loved the idea of a non-shedding  fluffy dog and maybe a dog that was in the 30-pound range. I also worried that if I waited too long, Ralph would not be able to help with training a puppy—I am not by nature a dog person myself and have never trained a puppy. So last month I registered with a labdoodle breeder to be on the wait list for a mini-doodle puppy.

Evidently a labdoodle is not in my future however.

Because ten days ago I walked into my gym and my Pilates instructor announced she had just picked up a stray puppy and didn’t know what to do with it. The dog had wandered or been dropped at a busy neighborhood intersection. She’d already been to the vet who found no i.d. chip. Everyone in the gym was gaga over the lab mix puppy, which had on a collar but no tags and seemed underweight but not mistreated. With her pale blond coat and dark eyes, she looked like a mini-Zeus. Very mini. Whatever part of her is not lab is something small, a terrier or maybe a beagle. She—my teacher, not the puppy although come to think of it her too—gave me one of her most winning, beseeching smiles. I called Ralph. We agreed to foster the puppy and maybe keep it if no one claimed her. The signs and Facebook announcements were already going up.

Ralph immediately named her Lola, as in “whatever Lola wants…” My granddaughter came to visit and fell in love. So did my daughter. Zeus not so much. Ralph and I tried to keep our distance in case someone showed up. But Lola was, is, awfully cute. No one called. I took her for shots and signed her up for puppy class. She began to house train in earnest.

Which means I am house training her. I am also feeding her and teaching her to sit and come—as far as I’ve gotten in basic dog etiquette. Basically I do all the disciplining and getting up at the crack or dawn and at midnight for “do your business” walks. Ralph cannot keep straight what and when Lola eats or how much to feed or that she needs to go out when she whimpers, but Lola adores him and vice versa. He is the one she sleeps with on the couch. She follows him everywhere when she is not following Zeus, who has gradually learned to tolerate her. I admit I resent that she needs me as soon as I sit down at my computer, and I also resent that she prefers to snuggle with Ralph. It is baby rearing all over again.

But I realize it is good we have a dog to train now rather than later, when it would be too much for Ralph even from the sidelines. I was about to write this up this afternoon when my cell rang.

“Do you have Lola?” Ralph was calling although I thought he was downstairs with the dogs.

“No, you saw me go upstairs.”

“I came up to the barn. I thought you had her and now I can’t find her.” Basically, he couldn’t remember if he took her with him to the barn or left her in the house. I said something snarky that I shouldn’t have and ran downstairs calling her name.

“She isn’t in the house.”

“Stop blaming me. We have to find her!”

Ralph’s calm in a crisis was always one of his signature traits, but not anymore. He began to panic, the way he does these days.

I went outside and called her name but was worried myself. We live on acres and acres of pasture and farmland. It would take no time at all for a small dog to disappear. At the front of the house, I called again. She came running from the direction of the barn.

The good news: Lola comes when called and will probably grow into the perfect companion dog for Ralph. The bad news: I really can’t expect Ralph, who has raised countless dogs over the years, to keep track of the puppy he loves.
ralph and dogs

ps.  Ralph says he thinks we should get the labdoodle puppy for Lola to play with.

Ralph Makes a Liar Out Of Me–By Reading

Alzheimer's and the Arts, daily life with MCI/Alzheimer's, , , , , , , ,

Well Ralph has made a liar out of me (probably not the first time, and no doubt not the last).

In responding to Mary Smith’s comment on last week’s post, I wrote that Ralph doesn’t read anymore. And at the time it was true. He hasn’t read a whole book for several months. Similarly, these days the long newspaper or magazine articles he used to relish don’t hold Ralph’s interest because they have too many facts to keep straight. The kind of serious movies we used to see together are often too convoluted for him to sort and remember now; every one we have seen in the last six months has been “too long and confusing.”

He will still ask almost daily for a book recommendation, put the book by his bedside table, but then let it sit there unopened on the growing pile. Yesterday he asked me if he’d already read some 400-page tome on top of the pile, a non-fiction history I knew he’d begun many times. Instead of going through the motions of pretending that monster read was viable, I had a brainstorm and suggested a very short novella, Ashes in My Mouth Sand in My Shoes by Per Petterson, instead. Ralph sat down and finished it in one reading. A young boy’s narration of his relationship with his father, written with childlike clarity, Ashes turns out to be the perfect book for a man with a short attention span to read (or have read to). Actually, it is a lovely book for anyone to read. Petterson writes about children and about men with startling sensitivity. His other books tend to be quite dark (if wonderful), but Ashes is more elegiac and bittersweet. Ralph obviously loved it.

I have been struggling for a while with the dilemma of how to engage Ralph’s interest and exercise his brain, not with any illusions of curing him but because he still likes to be engaged and the old ways don’t work.

And short stories are, well, short. Plus the emotions and psychology they explore require exactly the kind of intuitive response Ralph remains adept at giving. In fact, if anything, he is more intuitive than he has ever been. So after he finished the Petterson, I gave him Tenth of December by George Saunders. Not exactly light fiction and very serious, but as I said, short. And if he reads the same story over twice, who cares. What’s more, since they are short we can both read them and discuss.

I am pretty excited to discover I was wrong to think Ralph was beyond reading. For now, the choices have merely changed, well changed and narrowed….I have no illusions that the narrowing won’t continue, but  enjoy what we can while we can is my new motto.

My Mother’s Death

Caregiver/Spouse Issues, , , , , ,

I was planning to write today about my changing identity as caregiver since Ralph’s MCI diagnosis  but plans go awry…

My mother passed away this weekend.

I always thought that “passed away” was a euphemism to avoid because saying a person died was more honest and direct. But “passed away” is exactly what my mother did. Her breathing and heartbeat slowed; her expression cleared from pain. She suddenly looked much younger, her face holding all the ages of her life—the baby she’d once been, the young woman, the matron, as well as her current 96-year-old self. Her lives/life seemed to pass through her and drift away.

We did not get along when I was growing up or when I was young or even youngish adult. Ours was a competitive relationship filled with criticisms,resentments, recriminations. But we made a kind of wary peace and  began to get along much better in the years after my father’s death in 1990. She divided her year between Florida and Pennsylvania by then but liked visiting en route and arranged to have her hip replaced in Atlanta so I could be the one to care for her during her convalescence. When her health gave out ten years ago, she ended up in my house. Partly it was practical—I had a mother-in-law suite—and partly it was emotional. She told me that she knew she could maintain a certain semblance of independence with me and implied that our cooler relationship meant her life would be calmer than it might be with her other kids with whom she was closer.

Care-giving does not come naturally to me and my old grievances against my mother did not make it any easier, but for the most part our arrangement worked surprisingly well. She had a paid caregiver. I visited her downstairs daily. In the early days she came upstairs to our space regularly as well, although with time that became harder and then impossible. She was relatively independent for probably the first five years. Then, as her health deteriorated further, I had to become more involved. And these last two or three years, first at home and then most recently in the nursing home where she moved last year, her needs and my responsibilities became increasingly intense.

I am not going to pretend I am in a state of high grief. Being with her so much for so long during this long process, I know she was ready; frankly I was ready too. For a long time I had stopped thinking of her as “mother.” She had become the helpless elderly woman I cared for almost impersonally. As the old grudges evaporated, so had much of the mother-daughter/love-hate angst that bound us.

But we had our moment of closure. My mother cared a great deal about appearance and was perpetually critical of how I looked. On the Thursday before her death, in the last moments she was even partially cognizant, she looked at me suddenly and said words I had never heard from her before. “Your hair looks nice today.”