Tag Archives: anger and joy in Alzheimer’s

Relieving Alzheimer’s Stress is Exhausting

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

IMG_0255Ralph knows how to relax; but do I?

I recently wrote about Ralph’s good mood and said that his level of relaxation versus anxiety was the key. I wasn’t lying. Because he’s been relaxed, he has been in a great mood during the visits of both our son and our grandson and despite all the entertaining and disruption to his normal life that occurred while they were here.

There was something I didn’t mention, however, because I wasn’t aware of it until now that everyone has gone:  Keeping Ralph’s anxiety at bay has been less than relaxing for me.

The good news—I somehow lost weight in the last two weeks although I stopped exercising and started eating everything I usually avoid. The bad news—I am exhausted.

Keeping Ralph on schedule and unstressed is one thing when just the two of us are going through our set daily routine. Throw in extra people, break the routine: suddenly life gets a lot more complicated.

Not that I didn’t enjoy myself. I did because having people around to talk to and laugh with and make election jokes (kind of like funeral or Alzheimer’s jokes) with was delightful.

And not that my son and 16-year-old grandson weren’t amazing…both of them perceptive, understanding and patient.

But I still found myself smoothing things over. Making sure they were not overwhelmed by Ralph, and Ralph was not overwhelmed by them.

When my grandson told me “Oppa” was in much better shape than he’d expected, I was glad and relieved. But also, secretly, a little tiny bit miffed that I was doing my job so well that no one even noticed. (And I am not fishing for compliments here, because most of you face a ton more than I do, but I’m guessing you caregivers know what I mean.)

Well, there will be another test this coming week. Ralph has been invited to go fishing with his “fishing club,” three guys from Nashville with whom he has fished in Florida for the last fifteen years. I was originally going to drive him down, drop him off  on Monday and  pick him up from the guys on their way home Friday.

But then I realized, who was I kidding. Ralph would be increasingly anxious without me for ballast and he would end up being more responsibility than any three late-middle-aged (to put it kindly) guys could handle. So I am going too. We’ll see how I like being one of the guys.

Ralph’s Good Memory Mood Lets the Good Times Roll

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IMG_0154.JPG                                           (rainbow at our farm one recent evening)

Anger, resentment, frustration, impatience, worry, guilt—wow, I have really sounded like an unhappy person lately.

But spring has arrived, the sky is clear, and so far the mosquitoes are staying away.

Also, Ralph is in a good mood.

Which means that he is in a good memory mood. Which means he is relatively relaxed. And when he’s relaxed, his memory lapses don’t escalate. And I have more patience. So the cycle turns positive instead of negative.

It helps that our son is visiting for two weeks—an unheard of treat although since Ralph’s diagnosis he has really stepped up to the plate in terms of making time to spend with Ralph. Last weekend we threw a dinner party with my son’s friends and ours in attendance. Guess who was the life of the party? (“Ralph is so smart and funny,” one of our newer friends said to me the next day.) And I had a good time too.

In a couple of days our sixteen-year-old grandson is arriving for one of his understandably infrequent visits from his home with our former daughter-in-law in Namibia. S’s father, Ralph’s son from his first marriage who now lives in California but talks to Ralph on the phone at least four days a week now, wants S. to have some quality time with his grandfather while he still can.

Everybody will be here to attend the art show Ralph’s art class is having on Saturday. Ralph is the only male in the class. I suspect he’ll be feeling the love on Saturday.

Then on Sunday, we’re having a picnic for S’s extended family—Ralph’s first wife with her husband, kids and grandkids as well as S’s mother’s sister’s growing family. It sounds complicated, lots of blended families.

But the thing is, there will be lots of kids here. Kids love Ralph and he’s great with them. He’ll have a ball.

As for me, it is interesting, because my reactions have become oddly less complicated. If anything, I am surprised how little I mind doing all the organizing legwork.

In the early days of our relationship, I used to resent Ralph’s charisma, his skill and desire to socialize. I wanted him to pay me the attention he paid everyone else, and I often felt like an uncomfortable afterthought among his friends.

Now that our life together has reduced down to a narrow, often lonely routine,  I get more attention from Ralph than I need or want (although I do sometimes get jealous of the dogs I suppose). So it is a gift to see Ralph caught up in the whirl of social interaction with others for a change, to see him following and actively participating in conversations.

While the others laugh at his jokes, I can relax and enjoy Ralph himself in ways I forgot, if I ever recognized, were possible.

Let the good times roll.

Mea Culpa–Sometimes This Caregiving Spouse Gets Angry (And That’s OK)

Alzheimer caregiving, Caregiver Identity, Caregiver/Spouse Issues, Uncategorized, , , , , , , , ,

ANGRY WOMAN.jpg

Ok, so the truth is that I have been walking around all week furious at Ralph. Is that allowed, to be angry with someone with cognitive impairment? I have a voice in my head that I’ll call White Rabbit but that I also imagine (perhaps unfairly, but if I’m going for honesty here…) represents Alzheimer’s activists who would tell me, “No you don’t have that right. You can’t expect him to be a practical helpmate. You have to support him, not the other way around. You are a selfish bitch.” (I don’t really imagine the activist saying that last bit, but White Rabbit definitely.)

Well, my answer, this morning anyway, is so what? And I think it is important to accept my real feelings. As I try to define my role in Ralph’s life going forward, it doesn’t help to sweep the uncomfortable, unpretty emotional bits under the carpet. And the fact is that some of the ways he infuriates me now are no different from the ways he infuriated me before he was diagnosed.

So why am I angry this week? The details as I try to put them in typing sound almost silly: We have a rental townhouse in Florida that was recently flooded out after the neighboring townhouse’s pipes burst. I have had to take all the responsibility for dealing with insurance and repairs. I have been doing a lot of driving 5½ hours each way for 24 hour visits. This weekend is the final push—taking all the supplies and furnishing unavailable there and setting up the place. Usually I go alone but I need Ralph’s physical help this time. And he is driving me crazy.

I understand that when he repeats questions or statements, he really cannot help it. I may get impatient but I do understand. I understand why he keeps asking why we’re taking all these things to Florida, why he can’t remember to do the basic tasks he’s been assigned, why he keeps saying we can fit everything in the back seat when we obviously can’t since it’s already full. The annoyance of our repetitive dialogue gets on my nerves but is not why I am angry (well, a teensy bit).

I am angry because his obliviousness, which I usually convince myself to accept as a symptom of Alzheimer’s, is nothing new. During most of our marriage I could not depend on him when I was overwhelmed with responsibility.

And that’s what rankles.

Because I may be Ralph’s caretaker, but I’m also his wife. I imagine the wife role will recede more than it has already—and it keeps receding as our communication becomes more limited and we share less and less except the mildest chitchat—but for now the wife in me still has stored resentments that burble up when I’m triggered into remembering all the other times I couldn’t count on him, when he was self-important and impatient with my requests for help, when he was belittling, when he was generally a jerk—and all the times he was a delight too of course, but that’s another conversation.-

Another Perspective: The Caregiv-ee

Alzheimer caregiving, Uncategorized, , , , , , , , ,

 

shutterstock_252703540-2

 

I am sharing this comment in response to my post about not being a particularly nurturing personality for a caregiver because it touched me deeply.

“Anonymous” bridges the divide between caregivers and caregiv-ees (a wonderful term that solves some of the linguistic difficulties presented by dementia, Alzheimer’s, patient, sufferer, etc.) because he articulates feelings we (at least Ralph and I) often have trouble expressing in daily life.

And he has a wonderful spirit that deserves to be heard…

 

“Hey Alice. It’s been some months since I’ve posted a comment, but I read all of your posts, all of the comments. I’m like Ralph – diagnosed with MCI about 7 months ago. I’m not the caregiver, I’m the care give-ee, which is why I don’t post very often. But to you and to all of you caregivers (including my wonderful wife, who may or may not know that I post here), I say – you are doing a difficult job very well! Don’t analyze too much, don’t beat yourself up. I’m still early in progressing into AD, if I am progressing at all. I’m still hoping that I’m one of the lucky ones with a MCI diagnosis who will be re-tested and found to return to “normal” cognitive performance for my age. I feel like I don’t have a problem (Ralph’s denial?) but my wife occasionally lets slip that she sees stuff suggesting that I am progressing. Anyway, my wife is very patient, either overlooking my MCI or just my “normal” age related memory issues. I am grateful for that. I’m sure your significant others, wherever they are on the spectrum (at least up until full-blown AD), are also grateful that you are hanging in there. I don’t expect my wife to be perfect in dealing with me. I don’t expect that she won’t be short with me when she tells me for the 3rd time that we’re going somewhere next weekend. Maybe it’s naive, but I bet most of the spouses you are caring for (at least until they progress to AD) feel the same. So you are the heroes. So just do the best that you can, which is good enough, and pat yourself on the back and feel good about yourselves.”

Scattered,Bothered and Bewildered Am I–But Not a Nurturer by Nature

Caregiver anxiety, Uncategorized, , , , , , , , ,

tire change

So yesterday, driving Ralph home from his shrink appointment in Atlanta an hour away, I hit a curb and flattened three tires. The day before I was writing an important email to an editor I wanted to impress and somehow hit send halfway through the first sentence. Sunday I was annoyed that all the guests arrived late to the brunch/shower I was co-hosting until I discovered the invitation said 11:30, not 11:00 as I assumed. (Well, my co-host got that one wrong too).

I tell these screw-ups on myself because I am aware that lately I have not been paying attention, that I am even more scattered.

Of course, I sometimes worry that I am “catching” Ralph’s Early Alzheimer’s, but more likely I am paying the cost of doing business as a caretaker without a caretaker personality.

The other night a friend from my adolescence called, and we had one of those wonderful rambling two-hour phone conversations that seldom happen anymore. Back when such calls involved sitting on the floor mindlessly twisting the phone cord while I chatted, she was the one everyone in our circle assumed would be the one with a big family. She was the warm, loving one. I was the one with edge.

But the other night she told me that dealing with her elderly parents who live across the country has taught her that she is not a nurturer after all. Fortunately, her more nurturing sister is taking most of the daily responsibility.

I have never thought of myself as the nurturing type either. As far back as I remember I was angsty and rebellious, even as a toddler. My younger siblings will attest that I was seldom a protective older sister. I avoided my family whenever possible. At thirteen I decided I wanted to be a Jewish nun to avoid marriage and children.

Yet here I am. I helped raise a step-son and two kids of my own. After my mother-in-law had her stroke, I was primary caregiver until her death two years later. After my mother had a psychological and physical breakdown, she moved in with me for the next nine years until her mid-nineties when she spent her last months in a nearby nursing home.

And now I am transitioning from Ralph’s wife to caregiver. The shift has been more gradual, luckily, than in many Alzheimer marriages, but it is always in process. And if Ralph is still in denial, I am less and less.

The patience required doesn’t come easily to me. I read other caregiver blogs and am amazed at the resilience, the selflessness, the willingness to give up so much.

I am not so willing. I have if anything thrown myself into more activities, begun more friendships. And although I do bite my tongue most of the time and don’t think Ralph notices too much, I am impatient.

And I am not as focused on Ralph’s needs as a nurturer would be. I don’t know what he is doing for hours each day. I encourage his painting, but I don’t push him to listen to music or talk about his past the way I know I should. I don’t get him to dance or bowl or join some activity to get him out and about. I don’t suggest we take walks together because I like walking with my women friends more.

And you know what, I am not a bad person. This is what I tell myself, anyway. I do what I can.

And I just need to calm down, take a breath, and put one foot in front of the other without tripping on my shoelace again…

Alzheimer’s and Politics: Ralph’s Non-Vote

daily life with MCI/Alzheimer's, Tracking Changes, Uncategorized, , , , , , ,

IMG_0157.JPG

 

Well I just got back from voting. Super Tuesday. A big deal.

I live in a voting district so politically lopsided that only candidates from one party (and not mine) run for national and state office. Usually my vote is so irrelevant that I have been known to write in “Anyone But…” on more than one occasion. So, as depressing as this political season has been, I felt a little twinge of excitement knowing that for a change my vote will actually matter.

I asked Ralph if he’d like to vote. After all, he listens to Public Radio every morning and watches the news every night. At various times he has declared Candidate X is definitely his candidate, or sometimes Candidate Y until I remind him he is for Candidate X (whom I am backing). He has laughed at stupid campaign ads and made astute comments about various candidates’ stupid statements. He has always voted.

Ralph said no, he didn’t feel like voting today. Then he asked what the issue was. I said the presidential primary. He still wasn’t interested.

His answer depressed me incredibly. In so many ways politics has defined our relationship from the start and now it is defining us in a different way.

When we met in the early 1970s, as the Nixon presidency and the Vietnam War were both unraveling, our romance centered on our shared political values. Or rather me sharing Ralph’s. We worked in the alternative press, and Ralph was passionate about his views. I remember sitting beside him on a couch as he went on and on about some theory or other while all I wanted was for him to shut up and kiss me.

Cut to the 1980s. Married with kids, and arguing a lot—a lot!!—mostly about decision-making; I found him controlling and he found me unsupportive. What we did not argue about was politics. We were both part of the small minority that voted for John Anderson in 1980 (although I had to look on the Internet just now to remember his name) and we both thought Reagan was not all there (little did we know, ironically enough). Our political agreement was important; I told myself that I could never be married to someone if I didn’t share his political beliefs

In the 1990s came the big shift. We moved to the country (another big argument that lasted for years) and midway through Clinton’s second term Ralph began to call himself a libertarian. “I’m not a Republican. I am Libertarian,” became his mantra. He was as passionate as a Libertarian as he had been when he was a socialist. I did not become a Libertarian, however, and was no longer susceptible to being swayed by any man.

In the first year of the new century, politics turned out to be a wonderful vehicle for arguments. We couldn’t watch the news together without fireworks, and the family dinner table became the set for great shouting matches, as our kids will attest. We railed against each other about taxes and the Mideast (although we still agreed on most social issues). Of course, under the political veneer our arguments were often about unspoken personal grudges and resentments we each nursed.

And now here we are in the most heated political atmosphere imaginable, and Ralph has gone lukewarm. He wants to be interested I think because he asks me frequently, “Who’s running again?” He cannot keep any of the candidates straight, although that may have more to do their deficiencies than with any cognitive deficiency on Ralph’s part.

The thing is, he would have voted today for whomever I suggested. While he listens to the news nonstop, very little of it sticks with him. This is not only a matter of memory. In part, his attention is turned more inward, but also he has a certainly mental hesitancy as if he doesn’t trust his own instincts. As a result I can easily convince him to agree with me, not only about the candidates, but also about any analysis of world events.

He now listens to me rail the way I used to listen when he railed. I admit I don’t mind being having an enthralled audience of one. I like being agreed with. I like being the one spouting righteous certainties. But this strange reversal is more bitter than sweet.

A Sunday Snapshot

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

Unknown

It is important to remember today. Not because anything particular happened, but because nothing particular happened.

We woke and drank coffee. Then while I worked in my office, Ralph read. For a while he had stopped reading, and I assumed books, like movies, had become too hard for him to follow. But I seem to have been wrong. Today he picked up Leonardo’s Brain, by Leonard Shlain, about Da Vinci’s genius–not exactly a light romp or what I would suggest to a reader who has trouble remembering a joke by the time he hears the punch line. Ralph is finding the book “fascinating”.

We had lunch and he read some more while I walked with a friend. Now he has gone for a “walk” with the dogs—they walk while he drives beside them in the truck. Soon we’ll have dinner and watch Sunday television.

So, a normal Sunday. Except Ralph’s conversation is sharper today, his attention more focused.

I know better than to believe that Ralph is suddenly “ getting better.” But it feels important to appreciate this moment of respite: A reason to rejoice that while the thread/threat of memory loss has woven itself into the fabric of our lives, it has not yet pulled the warp and woof askew.

Travels With Ralph

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

nola

 

This week was an adventure. Like all adventures, it offered highs and lows, memories I want to savor and some I’d rather forget.

Thanksgiving in New Orleans, with my daughter who lives here and with my son who met us there, was our first trip together, and Ralph’s first time away from the farm, in probably two years.

The last trip was to New York City for a wedding. He had no interest in making that experience into an actual vacation. He attended the official events, but otherwise I could not interest him in leaving the hotel even for a short walk around the neighborhood. All he wanted to do was nap. At the time I didn’t understand how much he needed those naps so I spent the two and half days in a general state of mild annoyance.

So, while I was thrilled at spending four days with my kids in a way we seldom do, and in a way we may not get to again, I approached this week with trepidation. As did Ralph. For the last month, each time he tried to remember the plan, I tried not worry if this much travel demanded more than he was capable of handling. Four days away from his familiar routine is a lot to ask.

On our trip to NY, the greatest stress for Ralph had been the actual travel—not only the time in the air but the airport with its crowds, its lines to maneuver and all the possibilities it offered Ralph to get confused or, worse, lost—our drive to Nola was actually pretty easy. For the six hours plus, I drove while he smoked and asked me questions over and over. We listened to the radio. It was actually kind of relaxing for both of us.

And he loved our small funky hotel in a converted mansion with its side garden where he could smoke….you might notice that smoking and Ralph’s ability to smoke has become a theme not only on this trip but in our life together.

These days I accept Ralph’s need for sleep and on this trip I made sure there was plenty of naptime. If anything, I let him sleep more than I do at home.

He needed to be as rested as possible because he was expected to take part in all activities with the kids. We ate great meals, we went for beignets, we walked along the river and down Magazine Street. We waited in line at Preservation Jazz Hall, where Ralph loved the music even though he had to stand the whole time. He loved laughing over jambalaya and drinks afterwards even more, loved walking through Jackson Square singing “The Battle of New Orleans” with my son-in-law as they vied to see who knew more of the words (a tie).

We spent Thanksgiving Day preparing a big meal at my daughter’s apartment listening to music, teasing, laughing, having the usual family spats and just hanging out together. Telling family stories Ralph was in his element, more the Ralph of years past than he has been in ages.

The description above is how I want to remember the week. But a shadow of tension followed me everywhere. “What’s the agenda?” he would ask and then ask again—questions I am used to answering over and over but my kids are not. At meals, I would suddenly realize that Ralph either wasn’t paying attention or had given up trying to follow the conversation the rest of us were having. Every time he needed to use the restroom in a restaurant I went on alert to make sure he could find his way there and back. He couldn’t follow the TV shows we sat around watching. Every few minutes he wondered aloud, “I wonder what the dogs are doing.” He went outside to smoke and went outside to smoke and went outside to smoke.

The good times, and they were good times, were a lot of emotional work for both us. I realized how much I have not only arranged my life around Ralph’s but how Ralph’s cognitive issues have played into my own tendencies toward over-planning and over-worrying, not only about him but about most areas of my life. What is most worrying is that I see how my own boundaries have narrowed, that I have to work doubly hard to keep myself engaged with the world beyond the parameters of Ralph’s MCI/Alzheimer’s.

Ten minutes ago Ralph climbed into the backseat of my car, headed back to the farm with my daughter and her husband who will fly off tomorrow on a vacation abroad (another anxiety producer given recent world events). I have stayed here in New Orleans to babysit my granddaughter for a week.

I know Ralph will be fine. He has been alone before, my son is going to stay on the farm with him a good part of the time, and various friends will be checking in regularly. His drugs are all marked, his calendar is filled in, there’s a week’s worth of meals ready, and I’m a phone call away.

But I am also a nervous wreck. Of course, maybe that has less to do with Ralph and more to do with taking charge of an 11-year-old girl who is a lot less easy to boss around than Ralph.

Keeping the Stories Alive Part 2: My Infamous Adventures in Recording

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

IMG_ecorder

Many of you will be glad to know I followed your advice and have begun recording Ralph’s stories.

Sort of.

My saga of good intentions gone awry began a few days after my last posting–and the many comments encouraging me to get those stories down–when I brought up to Ralph the possibility of collecting his stories. He was not exactly excited.

“I can’t write it all down.”                                                                                                                                                 “Then we’ll tape them.”

“I don’t like my voice on tape.”                                                                                                                                                      “We can tape and then transcribe onto the computer.”

“I don’t type.”                                                                                                                                                                                     “I’ll do the transcribing.”

“I don’t have any stories worth telling.”                                                                                                                                          “Let’s make a list of ideas.”

“Why are we doing this again.”                                                                                                                                                          “To give as Christmas presents to the kids.”

That last seemed to get to him. So I wrote down a list of ideas and we talked a little about each until his memories of his youth started tiptoeing back.

The plan was that I record Ralph on a digital recorder—the kids would not want cassettes from the apparently obsolete machine I have used for years—and then transfer the stories to flash drives for the kids. My local Apple guy told me to go to Radio Shack for the best choices and assured me that all I needed to do was make sure the digital recorder was “Mac compatible”. That sounded easy.

I bought the recorder that clearly said “Mac compatible” and the guy at Radio Shack spent half an hour teaching me how to use it.

That afternoon, Ralph and I sat on the porch for our first story. The hog killing. He complained he could barely remember, but once he got started, there was no stopping him. One remembered detail sent him toward another. The result was a great story.

Ralph was hooked.

He immediately launched into a second story about his Aunt Della, including generations of family lore.

Then I tried to transfer the stories to my computer and save them. The directions, at least the ones in English, were vague at best. I was able to plug the recorder into the computer and a file would show up, but nothing would save. I am not the world’s greatest techy, but I sensed something was seriously wrong above and beyond my ineptitude.

Although Ralph was raring to go with more stories, I was afraid to continue.

I returned to Radio Shack the next morning. My still helpful clerk Corey couldn’t get the computer to save the recorded file. He suggested I go to the Apple guy. The Apple guy was also willing to help. After much fiddling and frustration, as closing time approached he graciously installed some kind of music program he was semi-confident would take care of things. If not, I was to come back in two days, after his day off, and he’d figure things out.

Guess what still didn’t work.

I went back. Apple guy called Apple. He then apologized. Being “Mac compatible” is evidently not adequate after all. I went back to Radio Shack. Although I had obviously used the recorder, Corey gallantly exchanged it for “MP-3 compatible.” Then he spent another half an hour teaching me how to transfer from recorder to computer.

I came home and told Ralph we’d need to re-record his the stories he’d already told because they were lost.

“Why are we recording these stories again?”                                                                                                                      “Christmas presents.”                                                                                                                                                                    “Oh yeah, that’s right.”

But it was already time for dinner and then bedtime. The next day I was tied up, then yesterday he had his art class. So here we are three days later.

Ralph is ready to start recording. He likes the idea of giving the flash drive presents. “It’s great we’re doing this.”

It will be. The problem is that now I’m not sure I remember how.

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