Tag Archives: Alzheimer’s anxiety

Covid with Alzheimer’s–UGH

Uncategorized, , , , , , , , ,

Yep, Ralph got Covid. And luckily it has not been life threatening. But the last few weeks have been “interesting” to say the least. In part because Ralph was the last to fall from our family outbreak:

Several Thursdays ago (I’ve lost track of time) Granddaughter A had her high school graduation Ralph did NOT attend the ceremony or celebratory dinner. I did, along with her three parents and various other relatives. It was a lovely day. Over the weekend A attended graduation parties, then spent a special evening with my daughter and son-in-law 

That Monday A tested positive. Not terribly sick.  

On Tuesday my daughter tested positive. Very sick but went on anti-viral meds which helped

On Wednesday my son-in-law tested positive.  Very sick but went on anti-viral meds which helped

On Friday the one-and-a-half year-old tested positive. Not too sick, but he couldn’t really tell us.

On Saturday Ralph tested positive. Very sick. But like the baby, he really couldn’t articulate well.

Everyone but the baby is fully vaccinated. Everyone but the baby masks. The two left standing, five-year-old  mini-Ralph and I, are still wearing masks around each other; we’re basically not allowed to be around anyone else in the family until tomorrow. 

The thing is, Ralph had not been anywhere, and once A was positive, precautions wen into high gear—masks, washing, and quarantining. Over and over I told Ralph to stay in his room and never never to leave it without wearing his mask. The only people he came in contact with at all were me, Mini-Ralph and the baby since  they had to stay with us once their parents and sister got sick. And I don’t think he was ever around them for more than a few minutes at a time before I shewed him back to his lair. But Ralph did wonder out of his room unmasked occasionally. While I always caught him it was not always immediate and those few minutes mattered. That baby who was not masked was the innocent culprit. He is too hard to resist. I know I snuggled him. And Ralph must have too. But I was never unmasked. That might be the difference—or it might be pure luck.

In any case,  Ralph’s Covid has been difficult for him because he doesn’t understand exact and has complicated life in general for the rest of us, especially my daughter the nurse practitioner who has basically banished me and Mini-Ralph to the second floor (a bit of a problem given I’m still not quite as strong as I’d like on my new hip) and taken over Ralph’s care.

Fortunately over her Covid symptoms (but still masked), my daughter has been sleeping on the living room couch and caring for Ralph while her husband, also post symptoms, cares for the baby at night. They are also back to their jobs, taking turns keeping the baby during the day using up PTO. (A is fine by now, and back at her job.)

Ralph went on the anti-viral meds as soon as he tested positive, but whether they are helping or not is impossible to tell. I haven’t actually seen him, except from a half closed doorway. I do talk to him regularly but 

  1. He doesn’t remember how he felt the day, or hour, before so there is no point of reference. He knows he’s sick but keeps forgetting it is Covid and will ask me what is wrong with him.
  2. He always has a cold this time of year and has been stuffed up for weeks and weeks—I was testing him regularly even before the family outbreak just in case. He is if anything less cold-like than he was, but he is thoroughly listless.
  3. He embraces his listlessness, which breeds more listlessness. So even as other Covid symptoms abate, his lack of energy continues because it always is there. His favorite activity is sleep under the best of circumstances.
  4. The anti-Covid medication gave him stomach issues that others I know also suffered but could deal. Ralph had more issues because he is so passive about his personal habits under the same best circumstances as above. Or because he had to stop taking some of his normal drugs.

I am taking over Ralph from my daughter on Sunday—and sending Mini-Ralph home to his folks. Ralph will be past the infectious stage by then, although masks will be worn. I am a bit nervous but also ready. I am also thinking that barely over two years ago, just before our move to New Orleans, he had to be hospitalized with a blood infection; afterwards his cognitive skills declined sharply and never full returned to their pre-infection level.

I am a little worried.

An Alzheimer’s Swap: Less Memory, More Fixations

Alzheimer caregiving, Alzheimer's Spouse Issue, , , , , , , ,

tags

Ralph can’t find his belt. Everyday.

I’m at the dining room table doing my morning’s bookkeeping when the phone rings. It’s Ralph calling from the bedroom, forty feet away.

Have you seen my brown belt?

No.

When was J here. He must have taken it. J is our son and Ralph has decided that anything he’s missing has been taken by J

J has been gone for two weeks and you wore it yesterday.

Well I can’t find it. 

I walk through the kitchen to the bedroom and find the belt in Ralph’s closet.

The next night I’m watching tv in our bedroom after dinner when the phone rings.

It’s Ralph calling from the den where he’s been reading.

Have you seen my belt.

Weren’t you wearing it all day.

Well I can’t find it. J must have taken it.

J has been gone for weeks. 

I turn my head to glance into the bathroom and see the belt hanging on the towel rack.

The phone rings in my car as I’m about to pull out of the driveway on my way to the grocery store the next morning.

Have you seen my belt.

Obviously misplacing a belt is no big deal and only a notch away from losing a cell phone or reading-glasses as I do all the time. What disturbs me is not the losing but Ralph’s unshakable certainty that someone, specifically our son, has taken the belt. 

The stolen belt is Ralph’s current fixation, but there have been many others—his broken tractor back when he was actually still able to operate the tractor, the tools we left behind when we moved, the whereabouts of our savings, and on and on. In each case he rubs at the problem like a worry bead and blame becomes the only explanation that soothes him. Luckily, so far, he has never turned his blame spotlight on me even when, as in the case of the tools, I was probably the culprit. 

While his list of fixations has been lengthening and taking more and more of his mental space, Ralph’s overall grasp of memories has weakened. I am not talking about the short term stuff everyone associates with Alzheimer’s. Yes, he repeats conversations over and over; and yes, he often can’t remember if he’s had lunch or fed the dog or brushed his teeth.  But he also has increasingly less grasp on those older memories I expected him to be enjoying now.

We’ve all heard that people with Alzheimer’s are good at reminiscing about their past. Well not Ralph. Although he’ll still occasionally ask about an old friend, he seldom connects a story to the name any more. He has several fixed stories in his head from the past, some of them a bit off kilter. (Remember when we used to listen to Leonard Cohen regular program on NPR? he’ll ask regularly.) And beyond the boundaries of those fixed stories lies a memory desert. There are so many tales he used to regale me with about his childhood and his life before we met that he no longer remembers. I am pulled up short with shock each time he looks at me blankly when I bring up the time he did this or that. What must that blankness feel like from the inside?

It now occurs to me that maybe I need to see Ralph’s fixations as mental oases that offer him subject matter to mull over and talk about and fill an emptiness he must find scary. I will try but I can’t promise I won’t still get annoyed when the next phone call comes and I have to defend innocent J.

Alzheimer’s and Assisted Suicide: Why Can’t I Read Amy Bloom’s Book?

Alzheimer's Spouse Issue, , , , , ,

By now most people reading blogs like mine, about caring for a spouse with Alzheimer’s, have no doubt heard about In Love: A Memoir of Love and Loss in which well respected author Amy Bloom writes about supporting her husband when he decides that he would rather die than live with the disease. It is the kind of book being praised on NPR and Goodreads. I gather the book is beautifully written and has deeply moved the readers who read and reviewed it.

I have not read the book. Actually, I have barely read/listened to the reviews, although I did more or less make it through the first one I saw in the NY Times earlier this week. From that quick skim through, I know that Bloom and her husband were deeply happy before his diagnosis of Alzheimer’s, that he decided he would prefer to die than go through the changes Alzheimer’s was going to make in his identity, and that he and Bloom were very united once he made his decision. 

I have no ethical problem with the choice they made. I believe that everyone’s quality of life decisions are individual. Ralph and I have signed our living wills. I witnessed my mother’s declining years up close and personal in my home as she enjoyed being alive less and less. I wished, and still wish, she had died sooner than later (like my father who died of a heart attack in the hospital the night before he was to be given a diagnosis of cancer, probably bone, for the excruciating pain he’d experienced during the previous month).

Yet reading about this book has flummoxed me (ok, creeped me out is what I really feel but was a little shy about saying out loud)? I have not been able to think straight about my reaction. My thoughts keep sliding away. What is it that has repelled me like the wrong side of a magnet? 

Well, number one, the idea of Ralph choosing to end his life right now is so completely foreign to me that I can’t get my head around the concept. As I’ve written here before, he is completely happy with his life—I write this sentence in a waiting room while he has his weekly music therapy; in half an hour he will come out humming Leonard Cohen’s Halleluiah or The Eagles’ Hotel California and keep humming in the elevator and in the car home.  

And even when he was first diagnosed and overwhelmed with some combination of anxiety and depression, suicide was not part of his mental vocabulary. His memory was shot but his mental acumen was still intact. We were both petrified at what the future would hold, petrified for different reasons. He was just petrified to have me out of his sight in case the rest of his memory went suddenly. He wanted to be taken care of. I was petrified at the responsibility I was taking on; I imagined life with an angry, anxious cognitively declining man and my heart rattled in horror. If he had brought up preemptively ending his life, I very possibly might have been open to it. (Pre-diagnosis, there were plenty of times I wanted him not dead exactly, but completely out of my life.) Then he went on his meds, his anxiety decreased while his memory declined at such a gradual pace that I needed to write this blog to keep track.

Ralph is definitely not the same man I married. I gather loss of identity was deeply concerning to Bloom and her husband, whose name Brian Ameche I keep conveniently forgetting. But while Amy and Brian had only been married twelve happy years, Ralph and I had been a couple for close to 40 years when he got his diagnosis. Over those decades we had both gone through identity changes. I felt I had already been in several marriages as the dynamics between us shifted. Who held the emotional upper hand travelled back and forth between us, occasionally landing at oases of shared affectionate unity. Our worldviews diverged, mine growing more optimistic, his less, and our political leanings became a more divisive problem than Alzheimer’s—I really hated libertarian Ralph of 2003. As for personal identity, gregarious, charismatic Ralph became loner Ralph long before the slightest overt evidence of cognitive decline and I slowly lost my social insecurities and became, however briefly, something of a social butterfly. And all this was before Ralph and I went into counseling in our mid-fifties and discovered we could get along after all. 

Which is to say, the new Alzheimer’s Ralph is as real to me as all the other Ralph’s I’ve been married to. And is certainly as real to Ralph. He has no interest in the man he used to be, has no interest in his old interests. He has no sense really of having “lost” much. He is living moment to moment and, as I’ve said, is as happy as he’s ever been.

So why does a book about a man who made a different choice trigger me so.  

Perhaps because the Ralph who does not miss his past also does not worry much about his future. Those fears have been repressed or blocked or just are beyond his scope. I, however, do think about the future. I do worry about unspeakables like diapers and loss of speech, of bedsores and hallucinations. I worry but sometimes—and this is the uncomfortable truth—sometimes, I wish they’d come already, that I was freed from togetherness limbo.

I know that is not the emotional thread of Bloom and Ameche’s story, but it is my emotional thread, and one that can tie me knots if I let it. So reading a book like In Love is not for me, at least right now. But of course, with Alzheimer’s there is only imagining what tomorrow will bring. 

Ralph’s Newest Test Scores-Not Great

Alzheimer's Spouse Issue, , , , , , , , ,

Ralph went in for his annual mental check up last week.

Ralph was first diagnosed with MCI (Mild Cognitive Impairment almost eight years (eight years!) ago. At the time his personality and interests were what they’d always been despite his memory issues. I remember being angry in the months (years?) before his diagnosis, thinking he never remembered what I told him because he wasn’t paying attention, or even less attention than he used to. Getting an actual diagnosis was almost a relief for me—having a name to excuse Ralph’s behavior, at least in one area. He was upset, anxious and scared, but as I kept reminding him, MCI, stood for MILD impairment.

For years Ralph was what one of his former practitioners called her Poster Boy for Alzheimer’s Care: year after year he avoided the cognitive and behavioral slide statistics predict. While I noticed subtle changes—slowing down, turning inward, growing passivity—his actual memory skills held pretty much steady from year to year. Then last year’s tests showed a slip from MCI to Mild Alzheimer’s. Still, MILD, I reminded myself. 

I knew we were lucky yet I have sometimes felt a tinge of resentment when friends, family members, and even professionals didn’t notice the changes I saw. Was I imagining things I something wondered.

At the check up Ralph and I are interviewed/tested separately. Despite having noticed, and written posts about, more recent changes in Ralph—his growing lack of interest in talking on the phone; a drop in his problem solving that shows up as confusion managing minor tasks he used to handle adeptly; and some loss of memory about the far past—I told Dr. K. that despite what I’d noticed, I didn’t expect his test scores to drop. A moment later Dr. S. came in and dropped a small bombshell: Ralph, who has dropped a point a year at most in the past, dropped three points on the 30 point MpCa scale this year, moving from Mild to Moderate Alzheimer’s.

Knowing the numbers doesn’t really change anything. They just acknowledge the changes I already recognized. But I do find myself thinking in new ways about the future and how my needs as a caregiver are bound to change. The last six months of hip and back issues that impede my own mobility—I hope temporarily–have colored my thinking. Last week I was in something of a funk, wondering if I should sell our house, the one I moved us into barely 20 months ago and spent a huge amount of energy renovating. I thought about elderly high-rise living, a place with a memory wing of course. But today, I am more upbeat. There is no knowing the timeframe in which we will be adjusting. All I can do is adjust day to day. So, the other day, after he suffered an anxiety attack while I was having a quick dinner with a friend—fifteen calls I in the space of half an hour inside the restaurant and several more calls after I talked to him because he couldn’t remember what I’d just told him—I bought a white board. Not to remind Ralph to keep to his routine, which would be a waste because he wouldn’t remember to check off activities once he did them, but to make sure he can see in writing where I am at any hour of the day. He loves it.  

I’m sure there are more small innovations to come, and more anxiety.

Evacuation and Alzheimer’s–The Perfect Storm

Alzheimer's Spouse Issue, , , , , , , , , ,

When the City of New Orleans announces a voluntary evacuation before Hurricane Ida, my daughter, son-in-law and I have to make a quick decision whether to stay or go. We decide to go. 

But it isn’t easy finding somewhere within a six-hour drive with room for seven people, including a 4-year-old, a 17-year-old and a10-month-old. More problematic are the two dogs, especially Ralph’s beloved, aged lab Zeus who has been visiting the vet every other day for a combination of laser treatments for his bed sore and acupuncture for nerve problems that make standing on his own impossible. Not a lot of choices pop up:  basically one place, in rural Alabama. It costs twice as much as everywhere else and is in the middle of nowhere but it takes dogs.  We book it.  Then I explain to Ralph we are going. Twenty minutes later I explain again. And again.

Saturday morning I explain again. Ralph has his usual leisurely coffee in bed while I start a load of last minute laundry before running out to pick up my granddaughter who will be riding with us and the dogs. We get back to find soapy water falling through the kitchen ceiling from the washing machine upstairs. Because old habits die hard and Ralph was always brilliant at all thinks mechanical, plumbing and electrical, I foolishly send him upstairs to turn off the machine and see if he can find a cause for the leak while I quickly mop up the floor. He comes down and says he turned off everything. I don’t double check. We somehow fit both dogs on stacked dog beds in our hatchback and take off.  

The four-hour drive takes eight (most of the delay getting out of New Orleans itself), but Ralph is actually enjoying himself because, per my granddaughter’s request, we listen to Bob Dylan the whole way. As we are about to make our last turn toward the rental cabin Ralph notices a sign to the next town 10 miles up the road. 

“Moundville. I worked there on a dig when I was 20.” He seems more animated than I’ve seen him in ages although he can’t remember many details. “The mounds were huge,” he brags to my granddaughter who at 17 is less than impressed. 

Sunday the news from Louisiana is not good, but texts from friends still in Nola remain upbeat. The weather where we are is fine and we are in bizarre evacuation elation mode so all of us, including the dogs, pile back into our cars to visit the archeological site now called Moundeville Museum.  We climb the many steps of the biggest mound, even Ralph. He is a little disappointed that the mounds aren’t as big as he remembers and that the park’s upkeep is not pristine, but he loves that the park is named after the professor he worked under. 

By that afternoon he has lost track of Moundeville since he is caught up dog care. We need to keep the dogs out of the small not particularly dog friendly house as much as possible. We keep them on the small porch as much as possible. I have walked Lola in New Orleans, but Ralph is not used to walking dogs, or to using poopscooper bags, or in having to walk himself period. I take care of the medications Zeus is on, both oral and topical, but lifting Zeus up into a standing position is a struggle that kills my already problematic back. I constantly needle Ralph to help despite knowing better.

Monday we learn about the power situation in New Orleans and realize it could be a week before we can go home, not the day or two we expected. My son-in-law’s uncle offers us his lake house in northern Alabama for as long as we need it. We pack up and drive further north. The cabin is lovely, with a lake view and the internet connection my daughter and son-in-law require to work, but it lies on a dirt road miles from the nearest store. We feel completely cut off from the world.

My sense of adventure is wearing thin. And Ralph’s coping abilities are faltering. Adapting to change was never easy for him and since Alzheimer’s it makes him miserable. He has lost all sense of humor as the rest of us try to keep our spirits up. He keeps forgetting why we are not home, keeps forgetting where home is. The two-hour drive with him to the lake house feels much longer as he asks the same set of questions over and over. Fortunately the lake house has a screened porch where he and the dogs settle in away from the rest of us—unfortunately the steps from the porch to outside are too steep for Zeus to manage.

My daughter and son-in-law have to work, remotely, fulltime. The teenager and I help care for the two little ones. But Tuesday I wake up with a seriously bad cold and by Wednesday have lost my voice and my back has gone out. I am only semi-functional. Ralph meanwhile sits on the porch with the dogs. 

I manage feedings and meds but nag him to walk the dogs. “Where’s a leash” becomes his common resentful refrain. What I am asking of him—walk a dog, pick up its poop and throw it in the trash—is unrealistic. Ralph is too slow, too confused, too frail. I find myself lumping him and his dogs together in resentful annoyance. Evacuation makes it harder than usual to live with a grown man who does nothing for himself.

Then because he catches my cold and I feel guilty. He sleeps nonstop for the next two days. When awake, for the meals we bring to him, Ralph seems more confused than usual. It reminds me of how much ground he lost two years ago when he was hospitalized for a blood infection. 

By the weekend, all seven of us are exhausted. There is still no power in New Orleans and no assurance from the outage grid map when it will come back. Togetherness is getting old. The kids are cranky and Ralph is crankier. But by (our second) Monday, when my daughter’s power has returned and she leaves with her husband and the boys for New Orleans, he has started feeling better and seems to have settled in. He has abandoned the porch to lie in bed reading or napping with the dogs on their beds beside his.  But if asked he helps walk the dogs and even poopscoops, though he forgets what to do with the green bags which I find left in odd spots.

The next morning, the grid shows our power is back too, hurray. We, meaning my granddaughter and me, pack up for the trip back home while Ralph mostly watches. As we load the dogs into the car’s hatchback (where they are remarkably happy travelers) Ralph can’t quite get a handle on why we aren’t home. 

“Is the vacation over?”

Back Into the Fray: Adjusting To Ralph’s Alzheimer’s world as the Real World Re-0pens

Alzheimer caregiving, Alzheimer's Spouse Issue, , , , , ,

In the first years after Ralph was diagnosed with MCI, I rushed to record all the nuances of his condition and my reactions. Lately not so much. The nuances have become…well repetitive: Ralph’s moments of clarity and confusion, my moments of impatience and remorse, his conversational loops, my problem-solving to work around his lapses. Intellectually I know there has been a slow deterioration but after six years, I don’t notice so much. My life is what it is. Even the last 18 months in a Covid world have made a minimal impact. The routine we inhabit reduces the impact of Ralph’s limitations. 

But a new wrinkle has cropped up:

Now that vaccinations have arrived, so have visitors. I’ve been worrying for months that the new house was too big for us, but it is suddenly the perfect size for the influx of friends and family members who love that’s we’re only a block and a half a block from the streetcar line. Our guest room has been booked for weeks and will be until mid June. I already have “reservations” for the fall.

I suddenly have company for eating, shopping and hanging out, even for watching TV, all the activities in which Ralph is reluctant to participate.

The issue I have to figure out is how to incorporate Ralph. How much to push him to engage, how much to let him be. So far the visitors have been folks who know him know him well and have known him both before and since his diagnosis so Ralph has been comfortable. 

Most recently my oldest friend—we met in preschool—and her husband stayed for five days. While we have seen each other for brief visits (and I have visited them solo quite often), we last spent this much concentrated time together barely a month after Ralph received his initial diagnosis of MCI when we met for a vacation in Savannah.  Back then Ralph was still very much himself in most ways. The only symptom was his tendency to repeat himself, so although our friends knew about the diagnosis they barely noticed any change. That is until he had a panic attack; the husband was alone with Ralph at the time and clearly shaken when Ralph became frantic to find me. His newly prescribed meds, including an anti-anxiety pill, had not yet kicked in and he was petrified and slightly disoriented.

This visit, there were no anxiety attacks. There was a moment at dinner the first night when Ralph did start to fixate on how long the waiter was taking to bring his drink and my anxiety rose because I sensed a loop starting to take shape. But the beer arrived and Ralph settled down before our friends seemed to notice.  Ralph was charming and chatty the rest of the evening. “

He’s better than I expected,” my friend’s husband said with obvious relief, a relief I shared.

The next few days we ate together as a foursome some of the time, and other times Ralph opted to stay in his chair with the dogs at his feet while I took our friends to explore the city. Ralph appeared to enjoy the company although each morning I had to remind him we had guests in the house and who they were. 

At one point as we were driving somewhere as a foursome, women in front, men in back, Ralph joked that the wives would some day be sticking the husbands in facilities once they were “out of it and incontinent.” Everyone laughed as if such a possibility was unimaginable. But I can imagine all too well. 

By the fourth day of being around Ralph, my friend commented on how hard caring for Ralph day in and day out must be. I appreciated her awareness even as I bristled with a certain defensiveness. “Oh it’s not that bad. I’m used to it.”

And I am used to Ralph as he is now, even comfortable with it as long as we’re just the two of us. But as I reconnect with the world outside our front gate, I find myself less and less comfortable. My challenge is now to find a way to give Ralph the comfortable security he needs while keeping myself invigorated and challenged.

    “Does It Get Easier or Harder?”

    Accepting one's Alzheimer's, Alzheimer's and illness, Alzheimer's Spouse Issue, , , , , ,

    Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

    Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

    In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

    I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

     Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

    So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

    But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

    The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

    I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

     

     

    One Very Bad Day In Memoryland– A Blip or Ralph’s Future?

    Alzheimer's Spouse Issue, Uncategorized, , , , , , ,

     

    IMG_0470This is the view I went to sleep and woke up to this morning and will again tomorrow, a far different view that I posted, was it only yesterday morning? And was it only yesterday that I mentioned a niggling suspicion that something was more “off” than usual with Ralph? It seems like ages ago.

    After I posted those concerns yesterday, I went to wake Ralph up for the second or third time in the morning and this time I made him get out of bed. He’d slept for about sixteen hours and although he was not as spacey as the night before (including symptoms I realize now that I downplayed in my post) he still didn’t seem quite right to me.  I couldn’t exactly say why, but intuition kicked in and I called the Brain Center at Emory. They took my symptom description extremely seriously and told me to head to an urgent care. Urgent Care listened to the symptoms and immediately sent me to my local hospital emergency room. It freaked me out a little that Emory was so concerned.

    Even as we drove and I repeatedly retold Ralph where we were going and the reason, I wasn’t sure if I was over-reacting. Was there something actually wrong or was Ralph just exhibiting his new level of cognitive impairment (that scary word dementia swirling in my head)? And which would be worse—that he’d had a small stroke (or that a large one was about to come) or that his Alzheimer’s had progressed?

    Actually, at this point in real time (real time interrupted every two minutes as I jump up to turn off his malfunctioning hydration buzzer) I don’t know which is true. The hospital admitted him because the tests run yesterday showed his white blood cell count seriously elevated, but the doctors are puzzled because the tests so far show no sign of the infections that usually accompany this kind of count. The count itself  has come down somewhat today, perhaps because Ralph has been getting intravenous hydration, but the numbers are  nowhere near normal and the hospital is keeping him at least another night while waiting for some more testing results.

    Meanwhile, again perhaps thanks to hydration, he seems lucid when he is awake. But, except when a couple of close friends visited, he has mostly been asleep. I’m not sure if he is exhausted by this experience, if he is ill, or if this is about how much he’d like to sleep most of the time at home if I let him. Similarly, is illness or being in the hospital or some combination of both the reason he has no appetite and is generally shaky weak and without a modicum of energy? More worrisome because so out of character, Ralph has not asked about his dogs; nor, amazingly, has he voiced any interest in smoking.

    The doctors have said that cognitively compromised individuals are more prone to becoming disoriented as a result of what would seem minor illnesses or health issues, including anxiety, for others. Given that we are moving in three weeks, (and don’t let me get started on the practicalities that threaten to go awry now) Ralph is certainly under stress. But has the stress caused him a temporary physical and mental set back or has his new normal dropped a notch or more. The doctors tell me I did the right thing in bringing him in, and given his blood count I guess they are right, but I wonder if he is now on a slope that is only slippery but also more steeply downhill than I am ready to handle.

    And there goes that damn buzzer again!

     

     

    Alzheimer’s Drip by Drip by Drip

    Alzheimer's Spouse Issue, Uncategorized, , , , , , , , , , ,

     

    faucet jpg

     

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

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

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

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

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

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

    SORRY TO SOUND LIKE A BROKEN RECORD, BUT….

    Alzheimer's Spouse Issue, Uncategorized, , , , , , ,

    broken record

     

    “Perhaps machines or vehicles are the common thread,” my reader/friend Joared commented to me last week, a point so obvious I wonder that I had never considered it. So I have been thinking it over ever since.

    Of course, Ralph obsesses about machines and vehicles. The same way he obsesses about money.

    Machines, vehicles and money—they are the most potent examples of his former prowess, now lost.

    When we met he was buying, refurbishing and selling old telephone trucks to fellow hippies. He was also at the tail end of renovating an old house he’d bought for a whopping $7,000, doing all the work himself from the electrical to the plumbing to sheetrock finishing to laying tile countertops. A few years later (with my younger brother as his assistant), he turned three wrecked Triumph sports cars into two immaculate ones. His work was immaculate, and the profits he made grew and grew.

    Ralph was one of those annoying men who could fix anything. He had an innate understanding of both how things worked and how to make money.

    Now I have to cajole him to change a light bulb, and if he actually does, I heap praise on him the way I would a kid. He has not paid a bill in years and can no longer figure a tip in a restaurant.

    But he asks me repeatedly to go over the details of our finances although the figures immediately get jumbled. I get resentful because I am the one keeping track, but I see that he wants to maintain hid identity as a man with business sense—and in fact he does still have business sense. Today we were discussing our will, the same details I have gone over with him too many times to count, and he made a small suggestion that made complete sense and would avoid possible hurt feelings down the road. I made praised him with the same fuss I praise him when he changes that light bulb. He was thrilled and then forgot what the suggestion as well as the problem it addressed.

    Two hours later we were faced with tractor crises part three. It came back to us looking fixed and shiny yesterday. I paid our new tractor guy his whopping bill. Today when our friend/bushhogger tried to cut the field, the darn machine would not do the job. Our new tractor guy was called back. A new leak was found along with possible but not certain other problems. Our new tractor guy loaded the machine back on a trailer off they went. I have a sinking feeling that instead of taking responsibility for more effort, our new tractor guy is going to blame the problem at least partially on Ralph’s years of neglecting the tractor. I am partly furious at Ralph, but how can I be furious at Ralph for MCI induced inattention to a machine any more than I can be furious at him for MCI induced inattention to our business in the last years before his diagnosis.

    And how can I be furious at him when I sense he is probably aware that he has messed up in the very areas where he once excelled.