Tag Archives: facing changes MCI makes in life

Mourning Friends’ Deaths–A Startling Blip in our Alzheimer’s Routine

Alzheimer caregiving, Caregiver/Spouse Issues, , , , , , ,

I haven’t been posting much lately because our life with Alzheimer’s has been sloping so gently that there is little about Ralph’s situation I haven’t already discussed. However, last weekend was a noticeable blip on the static screen of our physical and emotional schedule.I continue to ponder the experience and what it says about Ralph and me now.
In November Ralph’s oldest friend Jim had died in Atlanta. Ralph and Jim met in high school and although their lives had moved in somewhat different directions, the two remained friends and saw other regularly over the years, at least until Rick’s cognitive decline, along with our move to Nola, made Ralph less interested in keeping up with anyone. Somewhere along the line he lost Jim’s phone number, but during the height of Covid I messaged Jim through Facebook suggesting he call Ralph. I didn’t hear back directly but asked Ralph frequently over the next few days if they’d talked;. One afternoon he nodded, “Yes, we talked this morning,”  but showed no memory of or interest in the conversation. Thinking back, I could kick myself for not checking his phone right then and saving Jim’s phone number  I did neither, big mistake. When Jim’s distraught widow contacted us to say he’d died, I was the one who talked to her at length, but Ralph was visibly shaken Ito a degree I had seen only once before—when my father, whom Ralph loved from the moment they met, died

I tentatively brought up attending the memorial scheduled for January. Jim’s widow made it clear it would mean a great deal to the family for Ralph to  take part. I have learned (the hard way) not to  push Ralph into activities—even those I think would be good for him—and to let him set the pace. But Ralph seemed enthusiastic. “I wouldn’t miss it for the world.”

Of course as the day approached Ralph’s enthusiasm waned. He’d forgotten we were going, only sporadically remembered that Jim had died. Still, he passively went along when I reminded him the night before and again Friday morning that we were driving that day to Atlanta for the Memorial Celebration at Manuel’s Tavern the next afternoon. 

Manuel’s Tavern, a bar known as a gathering spot for liberal and leftist activists was a fixture of Ralph and Jim’s youth as political hell-raisers. In fact both were banned from the bar at different times. (I don’t know why Jim was; Ralph was banned because he foolishly brought his mother, whom I’ll  euphemistically call a character, and she got into a fight with another patron.) Jim had stayed politically active; Ralph had become a entrepreneur, even briefly flirted with libertarianism before returning to the liberal fold. Except for Jim, he had lost contact with his old comrades. 

During the eight hour drive Ralph veered between “I am dreading this” and “I wonder who will be there” He tried to dredge up names of old (literally) radicals from the sixties, most of whom I didn’t know since I met Ralph in the early 1970s while we worked at an underground paper called the Great Speckled Bird. Aside from Jim’s family, the only people I knew we would be seeing were Ralph’s first wife and her husband; I’d been emailing with her. I was beginning to wonder if I’d made a mistake dragging him so far. Then we checked into a small hotel in what used to be a flop house in our old neighborhood and discovered the hallways were lined with framed covers of the Bird. It was an eerie beginning.

The memorial celebration itself was intense but meaningful. The first thing we saw walking in was a prominently displayed picture of Jim as a young man, a photo Ralph had taken. Jim’s widow acknowledged in her speech how much it meant to her that Jim’s oldest friend had traveled so far to be there. Ralph nodded and murmured agreement as she and Jim’s sons discussed Jim’s life. And when one of his sons brought up the influence Jim’s mother Noreen had had on all their lives Ralph teared up. Noreen had been like a second mother, introducing him to ideas and conversations, but more important giving him the emotional support, 

he’d never had in his own home. After the speeches he talked to Jim’s widow and two of the sons at length with graciousness and heartfelt emotions. This was a Ralph I seldom see, and frankly seldom saw before Alzheimer’s.

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about 

“I wouldn’t have missed this for the world,” he said as we walked to the car. I was deeply moved.

Yet fifteen minutes later, when a friend we met for dinner asked him about the afternoon Ralph shrugged, “A waste of time; nobody talked about Jim.”

Since then he has not mentioned our trip but every so often asks either  “Who died again? Or “So what did Jim die of?”

Meanwhile, the night after the ceremony I learned that my oldest friend, whom I’d known practically from birth since our mothers were best friends, had finally succumbed the cancer that he’d been fighting for over a year. It was not a surprise, but his widow sounded disconsolate. And today, as I was writing this post, I was interrupted by by my phone beeping—another close friend calling to say her husband had died unexpectedly two days ago. She described herself as numb.

Death is obviously on my mind.  But not only death. Also the complexity of marriage, the complicated grief of the widows.  And the complicated maze my marriage has become, the rare but real glimmers I get of Ralph’s true self punctuating the gray twilight he inhabits most of the time. And how confused my own feelings become.

WHAT HAPPENS WHEN THE CAREGIVER NEEDS CARE?

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Ralph and I are about to enter new territory, at least temporarily.  And for me at least it will be a new kind of balancing act, mental and physical.

Next week, exactly two years to the day since moving here and one year since I began a cycle of accelerating pain in my left leg and backside, I am getting a hip replacement.  

The good news is that hip surgery is usually very successful and I am thrilled that there is a solution to stop the pain and give me back most of my old mobility. 

But every time the doctors describe what I will not be able to do during the recovery, I wonder how Ralph will fit into the picture. I will be the one heavily dependent on others for around two weeks and then have limited mobility for awhile—i.e. no bending more than 90 degrees, limited household chores, etc., depending on how quickly my body recovers. At that point I should be able to manage my own needs fine, with a little help, but will I have the energy to manage Ralph’s too? And I certainly can’t count on him for help. 

Arranging my own immediate care has been easy. My son came last weekend to prepare the house, putting a TV in the bedroom for me, cleaning my car and moving furniture. My daughter, a nurse practitioner, is taking a week off to stay with me. When she goes back to work, my son will come back until my post-op check up. Reorganiing after-school care for my grandkids—I usually pick them up every day and keep them until their parents get off work—was not my problem but has been taken care of, fingers crossed.

As for Ralph, we are entering uncharted territory. He is clearly nervous, when he remembers the surgery is coming. Typically, his biggest concern is whether he might have the same problem. He also says he will do whatever I ask him to help. I have already taught him many times, each time it is the first, how to load the dishwasher and feed the dog. Actually the dog, who is learning to sleep in Rick’s office instead of the downstairs bedroom with Ralph, where I have re-installed myself to avoid stairs, has adjusted very well.

Ralph’s adjustment may be trickier. He functions best when he can stick to his routine of eat-read-nap.   I am worried that after the first weeks, once I am back on my own yet not back to full strength, I won’t have the patience to keep that simple routine running smoothly. Intellectually I know the details will work themselves—his pills, his beers, the laundry, unloading the groceries, defrosting the stews and casseroles I have pre-frozen—but I have been obsessing because there is something deeper bothering me.

It showed up last week when I had two scares. One was over my blood pressure, which was worrisomely high when I was checked at a pre-op appointment. When I checked it again the following day the numbers were even higher, dangerously high, so high I was advised to take an extra dose of my blood pressure medicine and then when it stayed up high to go to an emergency room. Which I did, driving myself after telling Ralph I was just going to a doctor’s appointment. He barely looked up from his book. Fortunately the numbers dropped and I was home to make dinner. And the numbers have continued to drop so my surgery is still on. 

One probably reason for the high numbers was an attack of high anxiety over the second scare: I was told that my surgery date was going to be changed causing all the plans I’d put into place to be scratched and leaving me alone with Rick and barely able to for five days. Fortunately my surgeon stepped in and said my family situation made schedule changes impossible.  But for a while there, I was petrified. Even writing about the possibility gets my pulse rising. 

The reality is that caregiver spouses have very little leeway. I want to relax into my recovery, and I will try—have books and movies at the ready—but part of me will be worrying about Ralph as much as I’m worrying about myself.

PS. As I wrote this I remembered that a less than a year after Ralph’s initial diagnosis I fractured my right ankle on black ice. Ralph was still driving then and actually drove an hour on his own to meet me in the emergency room. He drove me back to the hospital for surgery on the ankle weeks later and was a huge help in general during my five months off my leg. His reaction and behavior were in sharp contrast to his unhelpfulness, born out of fear and discomfort, when I had a mastectomy ten years earlier. Ironically, MC/Alzheimer’s has made Ralph a person who wants to help but has also ended up robbing him of that ability.

Thanksgiving and an Anniversary

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Yesterday was Thanksgiving. It was also Ralph and my 44th wedding anniversary. And although the flowers I received—from myself—are lovely (and to brag a little more, I made the vase they’re in during my glassblowing days), I did not expect much celebration.

The day before yesterday I’d begun to write a post  with the line, “One of those I’m at my wits end moments”, and assumed my mood would continue. My anxiety has been increasing for weeks, in part because of Ralph’s diagnosis, in part because I have taken on more work deadlines than I should have, and because my ongoing sciatica has drained my patience just as Ralph’s neediness has increased. Ralph’s constantly repeated questions and inability to grasp or retain simple concepts have irritated me to the degree they used to in the early days of his MCI, before they became the wallpaper of our lives. 

My wits were pushed to their end over a dog issue that I cannot seem to resolve: Lola’s almost daily, sometimes more often than daily disappearances, and Ralph’s resulting panic. Lola, now upgraded to the center of Ralph’s life since Zeus’s death, is a lovely, loving terrier; but if left alone in the fenced back yard off our bedroom, she sometimes finds a way under the house. Because the house is in the process of being painted and some plumbing work is also going on in the crawl space under the house, controlling access is a problem; we keep closing off vents and holes and she keeps finding new ones. 

Each time Lola disappears, we follow the same routine. Ralph comes to me distraught that Lola has gotten loose and run off. I tell him she is probably under the house (sometimes, we can actually hear her), but he begs me to go search the neighborhood. I drive around and never see her. I come back and remind him she is probably under the house. He doesn’t remember that she has that habit and argues there is no way she could get under the house because he has blocked all entries. I suggest he open an entry wider because I suspect going down and in through some tiny opening is easier than climbing back out. Finally Ralph agrees and five minutes later Lola appears. 

The first time or two this happened, I was as concerned as Ralph. Now I realize Lola is not going anywhere. That she cannot escape to the street once she is down there. I also know we cannot block access to the crawl space until improvements are complete and workers are gone. Until then, when Lola goes out, someone needs to stay with her. That would be Ralph or me.  And there lies the problem since Ralph is always in the room when Lola wants out, and I often am not.  

On Wednesday morning, Lola disappeared, Ralph freaked out, I did my obligatory drive/search, Lola then showed up, and I explained to Ralph that he had to stay with her. He agreed. I wrote it on his white board. He read it. He promised he’d remember. 

I began my other care-giving job, watching my adorable, but high energy demanding grandsons both under five. Usually I pick them up after pre-school at three and keep until one of their parents gets off work at 4:30 but Thanksgiving break meant I had them at our house most of day. When I got back after taking the kids home, Lola was missing yet again. We went through the routine. She showed back up, while I was dealing with the IRS, or rather trying to get through to a human person because the website was “unable” to verify my account for a refund. 

I was much less patient with Ralph this go round. I don’t think I yelled at him exactly, but he said I did. So maybe my voice went up a notch before I stormed off to make his dinner, which he ate with no memory of Lola disappearing or me raising my voice. My memory was less forgiving.

I went to bed thinking that I didn’t like—no I hated—always being responsible, always being caring, always putting someone else first. I didn’t want to be a wife or a mother or even a grandmother.

Then came Thanksgiving. My friend M to come over to share a very unconventional Thanksgiving with Ralph and me: Asian dumplings in broth from our favorite restaurant Luvi’s, my homemade cranberry sauce, M’s homemade pecan stuffed squash, and my knock out Tres Leches for dessert. M and Ralph don’t know each well, but she’s a natural extrovert and made him comfortable. 

She also likes to sing and asked if he’d like to join her on guitar. He said no, but as we sat and chatted, he suddenly pulled out his guitar. The next thing I knew he and M were singing Willie Nelson’s Crazy. Then while M looked through for a song in Ralph Dylan collection, Ralph started playing Mr. Tambourine Man, singing the rather complicated, twisty lyrics from memory. M and I were astounded. Soon the three of us were trying to thinking of more songs. We ended clobbering Yesterday and reminiscing about our first times hearing the Beatles.

So when M went home, Ralph actually agreed to watch the Beatles documentary Get Back on TV. It was the first time we’ve sat together sharing an actual experience in I don’t know how long. And this morning he remembered and discussed how Paul came across versus John. Furthermore, we actually agreed

Thanksgiving indeed. 

Love In the Time of Covid: A Marriage Milestone Passes Ralph By

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[Warning: this post is longer than usual but after all..

My son got married last Monday. 

I am elated. I am relieved. I am still anxious.

Marriage in the time of Covid is no picnic. In the weeks beforehand the wedding I struggled, wanting to be excited but worried about travel during Covid. I definitely botched how I expressed to my already nervous daughter my own concern about travel with unvaccinated grandsons. We had words. But once her pediatrician gave her a green light, I shut my mouth. We made it onto the plane as excited as we were tense, only to have the weekend get off to a rocky start once we arrived in NY.

The six of us traveling together from New Orleans, along with other family members and friends coming from elsewhere, had booked rooms in a well reviewed hotel in Brooklyn near my son JM’s home. Forget the reviews. As soon as we walked through the entrance, we knew we’d made a huge mistake. The place was a dump. Not only were the public spaces and bedrooms dirty, they stunk of stale cigarettes. And No One, including the desk clerk, was wearing a mask despite the prominently displayed sign stating that not to wear one was illegal.

Fortunately we checked out immediately, got our money back and moved into much better hotel—the clean and graciously run NU Hotel of Brooklyn (which I highly recommend). Everyone’s mood immediately improved. Of course, stress was inevitable. As more of our extended family gathered, family politics played out in small dramas —someone felt left out, someone became overly dramatic, someone behaved irresponsibly toward others, someone inadvertently stepped on someone else’s feelings. But by the brunch JM and his husband-to-be B held in their backyard Sunday everyone was getting along and I was enjoying myself, especially when I met B’s family, whom I immediately loved.  

As for the wedding itself…it was, as guests kept saying, “Magical.”

The perfect balmy weather helped. So did the beauty of Brooklyn’s Botanical Garden. 

Unlike at most weddings, a luxurious tea party reception occurred before the ceremony. A remarkably heterogeneous mix of multi-accented, multi-hued, multi-gendered  and multi-hatted guests mingled over tea sandwiches and sipped colorful fruity mocktails. Then ten or fifteen minutes before the ceremony guests began gravitating toward a long table lined with containers of dried flowers. 

The plan to have guests make bouquets had always sounded charming, but I worried ahead of time that few people would really take park. A waste of worry. Everyone, I mean every one present, did a bouquet. Suddenly we weren’t simply guests, we were participants, each of us carrying our flowers as we walked in pairs down a winding path toward the ceremony site to the strains of Leonard Cohen’s Halleluiah played by a string quartet of elderly Russians. Officiant Rabbi Gail continued our participation in the ceremony by calling for frequent group Amens. 

To to be honest, I don’t remember what we were Amening or many details from the service. I was too overwhelmed by the intensity of witnessing the joy and love emanating from my son and his beloved. I do recall the newlyweds led us back from the ceremony to  cake and dancing. But first came a series of toasts, heartfelt tributes to the love of the newlyweds and also their generosity toward others.  When my four-year-old grandson surprised everyone by quietly taking the microphone to make a final toast,  “I just want to say I love you guys,” there wasn’t a dry eye in the garden.

Also not in the garden was Ralph.

For months, Ralph had been in a loop of worrying.

“What if some yayhoo attacks the wedding and I have to defend JM and B,” he’d say several times a day as if he’d been ruminating on his own.

“Gay weddings are accepted now, especially in Brooklyn,” I’d remind him.

“Right, ,” he’d say, then add, “I hate flying, but I guess I’ll have to,”

“We’ll splurge and upgrade to first class for the flight.” 

“Ok,” he’d sigh relieved until the next time he brought it up.

I did book first class and arranged for close friends to be Ralph’s wingman and wingwoman in NY. Other friends also offered to help keep him occupied and happy. I told myself I had things well organized, that Ralph would do fine. 

But when my son visited two months ago, he and my daughter took me aside and made me face reality: Ralph might or might not be willing to get on a plane, but walking from the gate to baggage claim was beyond him physically as well as emotionally. He could sit at home and chat charmingly from his chair, but in public spaces he was unpredicatable at best. In restaurants he often became impatient and argumentative and embarrassingly inappropriate around wait staff. Being with more than two people at a time unnerved him; given he no longer enjoyed visiting our daughter’s house for casual family get togethers, how would he do around 70 people. Strangers would be a problem. A bigger problem, though, would be all those people Ralph knew he should remember but didn’t.

Recognizing the obvious, I still hesitated. Perhaps my shallow self worried what people would think, how I ‘d have to explain.  It definitely wasn’t because I wanted him there. I knew I’d have a better time on my own. Of course that made me feel guilty—perhaps the real reason I waffled.

But once I spoke to the experts at Ochsner’s brain clinic and a social worker at the Alzheimer’s Association, I faced reality.

I asked Ralph what he wanted.

“I don’t want to go.”

Usually I’d argue, but not this time. 

“Okay, you don’t have to go.”

“Can  you tell people it’s because I don’t fly anymore?”

“Yes, that’s what I’ll tell them. Because it’s true.” At least part of the truth.

While the wedding weekend swirled, Ralph had a lovely three days in the care of the wonderful Michelle. A nurse practitioner friend of my daughter, she brought her dog to play with Ralph’s dogs, she drank beer with Ralph and let him have an extra nutty buddy after dinner. 

“Where were you again?” He keeps asking looking at the mask I’ve been wearing while waiting to receive my post-travel Covid test results. 

“At the wedding.”

“What wedding?”

“JM’s.”

“Oh I thought that happened a long time ago. Did people ask where I was.”

“I said you don’t fly.”

“Well I don’t.” He nods. 

“It was a lovely wedding,” I add though he hasn’t asked. 

And so another page has turned.

BRAGGING, NOT RAGGING, ON RALPH

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Lately, I’ve been complaining a lot here about the difficulties of living with Ralph as his cognitive skills wobble and wane. While I hope that my honesty in voicing frustrations as I explore ways to manage as caregiver-spouse has been useful to others, I know I sometimes lose perspective (thank you to friends here you rein me in).

So it’s good to be reminded that life is not a straight line, especially when Ralph is doing the reminding:

1.The day after the contractor incident earlier this week (see ), Ralph asked me whether he’d had an argument with a contractor and what was it about. I told him, trying to soft peddle as best I could.

“Oh well, we can replace the system if he thinks it’s necessary,” he shrugged.

Despite my expectations, he hasn’t brought the subject up again, except to        acknowledge that he is embarrassed by his own behavior. Pre-diagnosis Ralph was almost Trump-like in his inability to apologize for mistakes so I consider his contrition a sign of emotional growth.

2.Then yesterday, while listening to the news, he made a comment so astute I must share it with you all. Someone on the radio complained about political correctness and Ralph stopped sipping his coffee to say, “Why would anyone want to be incorrect about politics or anything else?”

Why indeed? I borrowed his observation and posted it on my facebook pages where “likes” flowed in. Although he may not remember the details, Ralph can still cut through to the chase.

3.The kicker is a conversation we had an hour ago. Periodically I must drive to St. Petersburg, Florida, to manage the affairs of a disabled cousin. Since it’s a seven-hour drive each way, I have to spend the night. I long ago gave up on getting Ralph to come with me. Last year I drove down with a friend who also has (difficult) family to visit in the area. Another friend may drive down with me next week; she needs a break and I’ve bribed her with the promise of a gourmet meal, a nice hotel and the Dali Museum. But she has warned me she might have to cancel at the last minute.

Ralph must have heard me talking on the phone about the trip as he was napping on the couch because out of nowhere, he sat up and OFFERED TO COME WITH ME. Note the capital letters in red ink. I was/am flummoxed.

Whether he comes or not is not the point—and frankly, I’d hate to have him miss his art class, which is so important in his mental life (one week wouldn’t matter but he has to miss class the next week too, ah the complexities of Ralph’s usually empty schedule!).

The point is that he is still capable of breaking through the Alzheimer’s shell of inward-gazing to think about someone else’s well being, and that someone else is me, not as his caregiver but as his wife whom he wants to take care of.

So at the moment I am feeling an emotion that our relationship doesn’t often raise in me  lately—I ‘m not talking about affection, although I am feeling that too, but gratitude that this particular man is in my life.

Travel With Ralph (or Not)

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For the last two weeks, Ralph and I have been discussing a trip scheduled for this Labor Day weekend to New Orleans to babysit our twelve-year-old granddaughter while my daughter and son-in-law take their “babymoon”.

I brought up the possibility to Ralph a month ago when they first asked me to help out. Since I was driving down there–Ralph has made it clear he never plans to step onto a plane again in his life–I suggested he might come along.

I suggested but assumed he would say no. Since the family moved to Louisiana a year ago, I have visited probably six times. Ralph has been once, for a family Thanksgiving, and he didn’t exactly enjoy himself. Staying in a hotel discombobulated him, and he missed his dogs.

But he must have been in a good mood when I asked, for to my surprise, he said sure he’d come. I started fantasizing (and I use that word purposely) about a pleasant weekend of good meals and maybe a visit to the WWII museum, which I told him he would love.

A week later I mentioned the trip in relation to something else going on and he didn’t remember our first discussion.

“Why are we going?” he asked.

I explained. He looked perplexed. “And I said I’d come?”

I nodded. He said, “Ok,” then promptly forgot all about the trip until the next time I brought it up. We’ve had the same conversation daily for weeks.

Each time Ralph sounded a little less enthusiastic. Meanwhile I was growing a little less enthusiastic too as the reality of what it might take to keep both him and my granddaughter happily occupied began to sink in. I’d been sort of bragging to friends that Ralph was actually coming with me this time, but I started hedging, saying that if he resisted I wasn’t going to force him.

The truth is that traveling with Ralph is no more fun for me these days than it is for him. He was never the most adventurous companion, but he was generally game. Now his anxiety and low energy makes every trip a complicated obstacle course of arrangements: limited activities, limited walking, no wandering, no spontaneous choices, a lot of naps. I hear how trivial these complaints are. All that’s required is patience and a willingness to slow down, but that’s the rub. A husband in his sixties with cognitive impairment is in many ways equivalent to a typical eighties something husband; I know I’m not being fair, but while I hang on to late middle age by my fingernails, I resent him dragging me into older age.

Yesterday we looked at the weather report for the weekend: thunderstorms. Now my granddaughter and I are perfectly able to occupy ourselves playing cards, watching movies and eating junk food. Ralph does none of the above. What he does when faced with free time, of which he has much, is smoke cigarettes outside on the porch. But my daughter’s apartment has no porch. He’d be sitting outside in the rain.

“You’re off the hook,” I told Ralph and breathed a guilty sigh of relief, thinking how much more fun I would have.

This morning I was starting to pack my single bag when the phone rang. My granddaughter has been invited by a friend’s family to spend Labor Day weekend at a beach resort. Evidently I’m “off the hook” too.

How Politics Is Hitting Home, Or In Ralph’s Case How It Isn’t

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Living through this political season has been a more emotional experience than in past election years for three reasons.

 

One

Obviously the candidates have raised strong reactions. Like so many others, I have VERY STRONG opinion. I don’t want to be coy here—I dislike Trump to put it mildly while my enthusiasm for Hilary has been growing as the campaign evolves. But living where I do, in a smallish, very conservative southern town, voicing opinions can be risky. I have plenty of friends who I am sure have different political opinions. Usually our differences have been the basis for lively discussions. But this year we are all careful around each other, too careful. Friendships may be at risk in this climate.

 

 

Two

Hearing the rhetoric from all sides has set me thinking about my experience of family as a microcosm of the larger community experience, and specifically about how my family represents of today’s America.

My grandchildren through Ralph’s son by his first marriage visited this summer. It was a big deal because they live with their mother in Namibia (in southwestern Africa) so don’t get here often. And when they come they split their time among a lot of people—us, Ralph’s first wife and family, plus relatives of our ex-daughter-in-law. There are grandparents, aunts, uncles, cousins in a never-ending stream. Often the question of who gets to visit for how long causes tensions. But this year we worked the schedule out, and our extended families came together for various cookouts and bbqs.

Today I glanced at the photograph from one of those gatherings—I have blacked out the faces to protect the innocent and guilty—and saw a world: Caucasian, African-American, American Indian, Goan Indian, Protestant, Catholic, Jewish, Atheist, Straight, Gay, Old, Young, Middle Aged, Careers in Business, Education, the Arts and Health Care, Long Married, Single, and formerly married (Ralph and his first wife). My proud, rather self-righteous thought was what a poster family we are for the United States but then I realized we are probably a fairly run-of-the-mill mash up in today’s America.

exended family.jpg

Three

For the first time since he was a fourteen year old and his best friend’s mother involved him in her political activism, Ralph is watching the election from the sidelines. Even as recently as four years ago, when he’d already started to show symptoms of cognitive impairment, he actively and somewhat vociferously followed politics. I have previously written that Ralph’s political views have softened—from a hard-line socialist to a hard-line libertarian back to somewhere in the moderate middle—but this election has thrown his changing concern for the world at large into stark relief.

As he says with a chuckle whenever politics comes up, “I’m not really following.” And he’s not. He has decided he likes Hillary and doesn’t like Donald, but also has trouble remembering they are running against each other. As for the issues, he nods when I pontificate or voice outrage but then, like a kid caught stealing a cookie, he admits he’s not really been paying attention. The problem is that there are too many details to hold on to. Analysis requires remembering layers of thought. So does nuance. Ralph is great at remembering certain stories of his own and even lots of facts, but when he listens to sentences that should add up to someone else’s story, or argument, he gets lost. Therefore he steers away from stories and arguments.

But this may be my limited explanation of his disinterest. He would disagree. “Been there, done that,” he’d laugh before explaining that he’s simply over politics, the same way he’s over fishing and boating and business, because he’s been deeply involved in each and now he’s moved on. I am careful not to ask moved on to what?

Diaries and Dementia

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I want to pass on a link sent to me by my friend Caregivee, who has become my friend and conscience:

Caregivee sent me information about a new British study, “Carers’ diaries in dementia: Is there a role in clinical practice?”

I cannot verify the validity of this scientific study, which compared information recorded by 78 caregivers in daily diaries to what information caregivers gave in retrospect, but I was particularly struck by one conclusion:

“Our findings suggest that there may be a potential use of carers’ diaries in the assessment of dementia, in that they may identify more problems compared to relying solely on the retrospective account of patients and carers in clinic. More research using carers’ diaries in dementia covering longer period than a week may be required to ascertain other benefits.”

This study seems to suggest that by assembling the details from the diaries of many caregivers’ daily experiences–those small problems and/or solutions  that we forget about once they’ve passed, those fleeting reactions, those moments of clarity–health professionals may find ways to help caregivers improve caregiving and make the experience better for caregivees. We can use all the help we can get.

Although I may write here about my anecdotal experiences with some regularity, I have never been good about keep an actual diary. Perhaps I should start.

(But no promises that I can keep it up.)

Cognitive Impairment and Contentment, An Odd Couple

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IMG_0255stress

Ralph and I have our best conversation while driving, the same way my kids and I did, and for the same reasons: we have each other’s undivided attention and we can’t escape.

So of course I was maneuvering my way through rush hour traffic the other day when he brought up his concern that his IQ has dropped seven points since what it was when he was a boy—this statistical tidbit from his first diagnostic testing lodged in his brain three years ago; he’s brought it up occasionally ever since but rarely so bluntly.

I responded that most people’s IQs probably drop as they get older, then added as an afterthought (how I tend to break bad news) that his memory loss has probably made his drop worse. He nodded. When I used the term Mild Cognitive Impairment, he flinched, but only slightly. (We don’t use the word Alzheimer’s aloud in our house.)

He brought up how well his medications Namenda and Donepezil have worked. He also said he was wasn’t worried that eventually they might stop working as well because his doctor had assured him that there will be new drugs in the process being discovered and he can take them when these stopped being effective—I don’t recall the doctor saying that exactly but I didn’t contradict him because, after all, who knows?

Then he took a puff of his e-cigarette and said, “Anyway, I’m content.”

“Did you say content?” I asked.

“Yes, I am very content these days.”

I could tell he meant what he was saying, not “fluffing the goods” as he likes to describe people whose stories he doesn’t believe. I felt glad for him, and definitely relieved.

But also, I have to admit, I was a bit jealous. Ok, a little resentful too.

Because I am not content with my life these days. It’s fine to be told what a good, caring wife I’ve become, but it’s kind of a backhanded compliment coming from friends with exciting careers going full steam ahead. Not that my career was ever that full of steam, but my ambitions have flagged. I find myself drifting along, adjusting my rhythm to Ralph’s, wondering if my own days of productivity are over along with his.

I’d rather blame the heat. Maybe once the temperature drops below ninety I’ll be full of focus and energy again, ready to care for Ralph and myself with equal vigor. I’m going to borrow from Ralph’s new playbook and assume the best….

When Our Light Bulbs Dim–The Literal Ones, Not The Metaphoric

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

This was our big accomplishment of the last few days: changing ten light bulbs (embarrassing to admit how many and never mind for how long).

I realize how trivial changing light bulbs sounds, but that’s the thing. What used to be one trivial, mindless activity handled along with hundreds of other trivial activities in the course of a day has taken on a new distinct weight given Ralph’s memory loss.

Obviously I could have handled this chore mostly by myself but decided I’ve been letting Ralph slide. Knowing how much to ask of him is a delicate balance, but I haven’t been pushing him enough to participate in our daily life, too often accepting his plea that he’s tired, in part because not pushing is frankly easier for me too. So if he’s been sliding, I have too.

It took me five days to corral Ralph’s attention, but the other morning I got him to walk with me from room to room upstairs and down, noting which bulbs were out and what kind of bulbs were required while I took notes. He unscrewed a fluorescent rod in the kitchen and a decorative bulb from the bathroom vanity to make sure we got the correct replacement sizes. Over the weekend  we drove to the store–I let him drive while I rode shotgun.

In the parking lot he agreed to bring in the fluorescent but became adamant that he didn’t need to take the decorative bulb because he’d remember it. I acquiesced, but once we were on the bulb aisle, the bulb choices overwhelmed us both (evidently, according to a friend I was telling about our excursion, bulb buying has become more complicated  for everyone these days) . Ralph had no idea which decorative bulb matched what we had. Not 100% sure myself and sensing his rising anxiety, I ran back to the car for the example from home. When I got back, Ralph was still in the row where I’d left him and had found a matching fluorescent rod but misplaced the bulbs we’d already picked out (something I might have done myself if if truth be told).

By the time we got home, Ralph was exhausted. I changed the bulbs I could reach. He took a nap. The next morning when I mentioned changing the rest of the bulbs, he gave me a blank look. But once I reminded him that we’d been to the store and here were the bulbs, he happily changed the fluorescent bulb. Then he took a rest. In the afternoon I reminded him again and he willingly changed three bulbs n the kitchen. This morning, I reminded him again and he changed the last ones, including a light on the stairs that was admittedly difficult–especially since one of the new bulbs was a dud–and required a ladder as well as much turning on and off of the switch.

We are now a house of working lights. What a sense of accomplishment!lights kitch15

I’m giving Ralph the rest of the day off, but tomorrow I’m plan on reminding him to change the oil in the lawn mower. It’s been a year.