Tag Archives: anger and joy in Alzheimer’s

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

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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.

A Healing Vacation for Caregiver, and Maybe Caregivee

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The last few weeks definitely created a change of pace in our lives. After I came home from my hip replacement surgery, I was basically unable to do much of anything for several days except walk, with a walker, to the bathroom and the kitchen table. My daughter took over for the next week—she organized and cooked meals, kept Ralph on his schedule and trained him to sleep in an upstairs bedroom, made me rest and then rest some more.

When my daughter went back to work, my son came for the next eight days. He maintained a similar routine although by then I was moving a lot more, in bed less and transitioning from walker to cane. He set up an office for me downstairs and solved myriad computer issues I’d been having. 

Both son and my daughter prepared elaborate, surprisingly delicious meals that took into account my new low-sodium blood pressure diet. They spent lots more time talking with me than I usually get. They brought me hot tea before I asked. Meanwhile, the post-surgery pain was much less than I anticipated, requiring only Tylenol and muscle relaxer. I listened to books on Audible, binge watched the television my son had set up in the downstairs bedroom and did my very easy physical therapy exercises. 

In other words I not only got a new hip but enjoyed a rather luxurious two week stay-vacation. 

As for Ralph,  he got to sleep later than I usually allow, didn’t have to clear the dishes after dinner, and—not that he talked to them very much—definitely enjoyed having our son and daughter hanging around. In fact, he still has not quite ire-adjust to the fact that my son isn’t here, asking several times daily, “Where is J. Has he gone back to New York?” But any change in routine is  difficult for Ralph, even small tweaks in what time he eats dinner, so he also became slightly discombobulated, slightly grumpy and more than slightly anxious.

For the last week we have been back on our own. I still use a cane outside but am walking cane-free around the house. When asked, Ralph loads the washing machine and dryer for me because I am still not quite able. And he carries in groceries that I cannot lift. But otherwise I don’t ask for much more because, frankly, it is easier to do most tasks myself even at half energy. Since stairs are something I do only with care, I still make him sleep upstairs but still let him sleep later than I used to. He has made his own adjustment. He asks me daily how my leg is and wants to chat more. Or maybe I am just available more since I can’t escape upstairs to my office like I used. (He has interrupted me repeatedly as I’ve been typing just now.). He’s actually agreed to walk around the block with me once or twice; we move at about the same pace for now and have about the same stamina, although I hope for my sake that will change.

What I have realized over these weeks is that I am lucky. I have a new hip that means I will be able to resume a more active life that includes walking, shopping, visiting museums, etc. I have genuinely supportive children. And to speak in bare practical terms, l can pay someone weekly to do a light clean and change of bed linens (no small thing since this is one activity I cannot imagine doing at the moment and know Ralph can’t). 

Most important, I have been reminded that all in all  Ralph is still holding steady, still able to function within his narrow parameters, as defined by our yard and his limited daily routine. His Alzheimer’s related limitations can be annoying, but they are not yet seriously debilitating. I want to make use of this time, once my leg is healed and my energy is back to normal, because it may or may not last.

ps. Shortly after posting this, I misplaced my cane and guess who found it–Ralph!

Ralph’s Alzheimer’s Social Anxiety–or Mine?

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Yesterday I held a garden party. A baby shower actually for a friend of my daughter. I had volunteered us as hosts after several glasses of wine at a dinner the three of us shared a few months back. We scheduled the shower, pre-omicron, for the first Saturday in January, but the virus messed up our plans so we rescheduled and started thinking outdoors if possible. Then threatening weather and heavier covid numbers forced us to reschedule again. And again. But the third time stuck. Beforehand Was very nervous how it would go. I didn’t know most of the guests and was worried the weather would force us either to cancel or move inside, not really an option under the circumstance.

By it turned out to be a lovely day, light sweater weather under clear blue skies. The scones and petit fours were tasty, the tea was hot, the Prosecco bubbly. As an added surprise, the mother of the mother-to-be who had arrived the night before from her home in Spain to stay for the next two months It was fun for both of us to hang out with a bunch of young women and each other. 

Ralph came outside for about five minutes to take a group picture and was absolutely charming. Otherwise he watched from his office window, a ghost no one but me and maybe my daughter even noticed. 

His reaction/behavior encapsulated much of his/our life over the last six weeks. Close friends rented a house near us for those six weeks. Except for the week I quarantined after my grandson tested positive, we spent a lot of time together, probably seeing each other at least every other day. Sometimes we cooked together here at my house. Ralph loved when they came by and after the first week of my repeating reminders that they were here for a long visit, he began expecting them to be here for dinner every night and asked me throughout the day what they were doing or where they were.

Around them he was fully engaged and extremely witty. But he did not come out to dinner with us even once. I would go through the motions of asking him to come, but he wasn’t interested and I never pushed. For one thing he hated the idea of eating outside, even with the gas heaters keeping diners perfectly warm, but mostly he just didn’t want the hassle. Even in the house, he wasn’t interested in sitting in our very comfortable, warm living room. To be with Ralph we had to sit near where he was enthroned in his chair. 

My friends enjoyed being with him at first, but the unequal footing on which Ralph and the husband in particular stood became difficult for them to navigate after a while. I could tell they began to find it a bit trying, or that Alzheimer’s mix of trying and funny, to spend longer periods of time with Ralph. And they never quite got used to (and why should they?) Ralph’s endless repetition of questions. (The truth is that their discomfort was kind of a comfort to me, and release valve. I also have to admit I enjoyed those dinners out without having to watch over Ralph.)

As the weeks past and there was talk of moving the baby shower, he became particularly obsessed and confused when any mention of it came up. He couldn’t remember knowing the mother-to-be, whom he has spent time with on several occasions. But more than that, he could not get his head around the idea that I was having a party at all. 

Why are you cleaning the yard?  

Why are you going to the bakery?

 Is it a birthday party?

 Who is coming? 

Who’s pregnant? 

Who is she? 

How do you know her?

Is it her birthday?

 And of course, Do I have to come? 

The conversational loop gathered momentum over time and became inescapable. And inevitably so did giggles and impatience to cut the evening short. Last night, post shower, he was still asking the same questions as our friends stopped in for their last evening before heading home this morning.

So here we are.  Ralph has taken to his bed to recover from his busy weekend although he has already forgotten there was a party. And I think he’s beginning to forget our friends were here too.

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.

Celebration When You Don’t Feel Like It

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This has been a strange, difficult week. The world is topsy-turvy, fear and loathing rising in so many hearts, tempers short—even among people who agree—and tears flowing. Since Tuesday’s election, most of my friends and family are either numb or angry or both.

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Nevertheless, last night I hosted a dinner part for Ralph’s 70th birthday. A month ago when I asked him how he wanted to celebrate his birthday, he said he didn’t want to celebrate it at all.

But that felt wrong. So I decided to make his favorite dinner, roast chicken with mashed potatoes, and invite only people he is genuinely comfortable with these days.

I invited everyone over a week ago. But on Wednesday I thought of cancelling the dinner. Five of the seven invited were/are in major distress and the other couple I was afraid to ask because I politics is a touchy subject. I was afraid the “celebration” might turn into a verbal brawl or be lugubrious at best. But my depressed friends said no, push on.

Ralph was oblivious. He is well aware of the election but he was mostly just not happy we were having a bunch of people over. “Why celebrate that I’m getting old.” As I slaved over a lemon meringue pie filling that wasn’t thickening, I wondered why I was bother myself.

First to arrive was our friend N, who called ahead to ask if she could wear her Hillary t-shirt, since she doesn’t plan to wear anything else for days or weeks to come. I said sure. Then the rest of the election mourners came. They are friends with us but didn’t know each other. Usually that would make for awkward moments, but last night they had plenty to share and discuss. The wine flowed as fast as the conversation. Once our more conservative friends arrived, the politics dropped but the funny cards were opened. And the perfect Ralph gifts: cigars, a pouch labeled BEER MONEY and filled with quarters, and an antique lighter. He was in his element.

We ate our chicken and mashed potatoes (delicious) and our lemon pie (runny). We told stories about and toasted Ralph. We laughed a lot. At the end of the evening we all hugged.

It was cathartic and a lovely reminder that life goes on.

Then just before everyone was out the door, someone glanced at his cell phone:           Leonard Cohen had died.

“It doesn’t matter which you heard/The holy or the broken hallelujah”

As I said, life has to go on.

My Car Is My Caregiver

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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

 

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.

RALPH RUNS OFF THE CONTRACTOR

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

 

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Ralph ran off a contractor I was in the process of hiring this afternoon. It was almost funny, or will seem so in a week or two once I calm down.

Picture the scene: The sun beating down in 90 degree heat outside the house; my pen poised to sign the paperwork for repairs, Ralph appearing, fresh from his nap and barefoot; the contractor clutching his clipboard. Ralph asks Why can we just clean the system? The contractor explains. Ralph asks the same question again. And again. Why can’t we just clean the system? Each time a bit more belligerently.

The contractor tries to explain what he has already explained—that the system is past cleaning—and then tries again. He draws Ralph a diagram to show what he means. I can tell that the contractor doesn’t understand why Ralph is sticking so doggedly to an idea he has just explained won’t work and I can see and hear Ralph’s growing frustration. Both men become increasingly defensive. Meanwhile I stand there feeling helpless to diffuse the situation.

The irony is that the contractor was recommending exactly what Ralph had told me he thought needed to be done just yesterday.

Ultimately the contractor said he didn’t think he could do the job and Ralph said something less than gracious back (I have blocked what). As Ralph headed back into the house, I apologized under my breath to the contractor, explaining briefly that Ralph has Early Alzheimer’s.

Was that a betrayal to ease my embarrassment or an explanation that needed to be given? Should I even use the A word since Ralph actually officially still as MCI but no one knows what that is? I’m not sure.

The thing is that in his glory days, Ralph was not an easy man to work for—a demanding perfectionist who was also careful about every penny—and I sometimes had to run interference, a role I hated then. Evidently I still do, but Ralph was coming from a different place this afternoon. Locked into a narrow loop of one question he wanted answered over and over, Ralph was not processing the information he was receiving.

Although he is rarely aggressive in dealing with me or anyone else now, different versions of this problem have come up several times recently, usually related to business matters. I generally try to avoid involving him, but sometimes that isn’t possible. Sometimes the people Ralph is dealing with know he has a cognitive problem and give him leeway; sometimes they don’t and become puzzled if not belligerent.

A few minutes ago I received a call from the contractor’s wife apologizing profusely, saying that the contractor had no idea and would be glad to help us in any way. Meanwhile, I have already called someone else to by tomorrow. My guess is that a lot of conversation with Ralph for the next week or so will focus on this afternoon. What did the guy say? What did you say to him? Have you found someone to fix the filter? Who was the guy who came to fix the filter? Is the filter fixed? I will listen and nod, straining to be patient and silently kicking myself for not handling things better in the first place.

NO MORE MOPING

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

 

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I woke up this morning saying those words to myself. Which is a good thing.

The truth is lately Ralph has been getting on my last nerve. When he starts on one of his loops—lately his favorite has been the history of our dogs and the order in which they died—I tense up and cut him off saying I don’t want to talk about it. When he gets confused following simples directions or an explanation, I am dismissive. When he lights yet another smelly cigarette, I want to pull my hair out.

I could go on with a litany of complaints about Ralph and admissions about my behavior/attitude. But there’s no need, is there? Probably, hopefully, I am making myself sound worse here on the page than Ralph would say I am in real life. And if I am in a state of constant annoyance toward Ralph, I am in an even greater state of annoyance toward myself.

The thing is that sometimes I forget that living with MCI is a slog not a sprint. What I unfortunately don’t forget is that there is no end in sight, at least no good end.

The other thing I forget is that while we are in this together, we are also each in this alone. While I can try harder to empathize, I cannot know what Ralph is going through, and I can’t expect him to know what I am handling. I have to take responsibility for managing my frustrations and creating my joys. When I don’t, when I slip into blaming everything on the MCI, life goes downhill.

I am sure I will slip again, but for now, the sun is rising above the trees, the dog is chewing her fake bone, the coffee is brewing and all’s right, or at least okay, in this corner of the world.

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