Tag Archives: Alzheimer’s spouse stress

“Does It Get Easier or Harder?”

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.

 

 

How Is Ralph Adjusting?

 

dogs reading

How is Ralph adjusting? That’s the first question I’ve been asked in most of my conversations over the last six weeks (i.e., since my last post; God knows where the days have gone). People, particularly that growing list of old, almost lost friends I’m back in contact with, are understandably concerned; after all Ralph has had to adapt both to a strange new house in a strange city and to the new strange reality of a world ruled by the corona virus.

The answer is simple. He is adjusting just fine.

In fact, he has been living pretty much the same life in our New Orleans house that he lived for the last six years on the farm: rising late, reading and hanging out with his dogs all day, drinking his late afternoon beers, dinner followed by a Nestlé’s Drumstick for dessert, asleep by eight at the latest.

In some ways the adjustment strikes me as almost too easy. Limitations suit Ralph all too well and so do the lowered expectations that have crept in. Since his hospital stay he never went back to following a life list. Instead, I do the remembering: I give him his pills in the morning and tell him to shower (checking the towel to make sure if I’m not around) and eat breakfast. He eats a peanut butter sandwich for lunch, actually sometimes for more than one lunch since he’s not always sure he’s eaten when I ask and better to eat twice than not at all. He spends pretty much the rest of the day “reading” in bed or sitting on the porch with his dogs. He no longer even thinks of smoking or driving. Or listening to the radio although there is one by his bed. He still drinks beer. But since he can’t drive and doesn’t know where all the closets are in this house, I control his intake in a way I couldn’t before. I put three in the fridge and when he asks for more, I explain I can’t because of the virus. In fact, I am thinking of switching to non-alcoholic beer to see if he notices. He eats whatever I cook for dinner while we listen to NPR or his preference Pandora; he no longer keeps up a pretence of an interest in the news and gave up on following television ages ago.

His main focus now, even more than on the farm, is on his dogs. They never leave his side and are all the companionship he seems to need. Although he and I have only the most basic conversations, I can hear him chatting with the dogs on and off all day. The dogs may not have the space they used to, but they seem satisfied with their yard and the ease of access in and out from our bedroom although happier with their constant attention and….

OOOPS. AS I WAS WRITING THE LAST LINE I HEARD A COMMOTION AT OUR FRONT DOOR. Ralph was calling the dogs frantically. He had forgotten my warning a few minutes ago not to use the door because our gate was open to let the men making a repair outside. Now the dogs were loose, about to disappear into the streets of New Orleans. I ran downstairs. I yelled unpleasantly at Ralph, What were you thinking?! as I flew past him to grab Lola the younger dog before she ran away.  In fact she was happily peeing under a tree just outside the gate. The older dog was merely confused, not unlike Ralph, wandering between house and sidewalk.

I admit that once all three were safely inside, I snipped at Ralph again when I realized his plan had been to sit on the porch with the dogs and a beer—it was not yet 1:30 as I barked at him. Of course, in the excitement he had already forgotten his unopened beer can on the porch anyway.  I took a breath and re-found my patient voice, then suggested he look at his cell phone for the time.

I didn’t know it was so early, he said amiably and went back to his room (officially “ours” but practically his and the dogs until the minor but stalled renovation can be completed on his “studio,” attached to the garage but entered through the dog yard and only steps away from our bedroom door). Peace is restored. He has also already forgotten my lost temper—no need for apology or forgiveness these days.

Whatever I was going to  describe ten minutes ago is forgotten as well. All I am thinking about now is how we used to argue about everything, how a small mistake or misunderstanding could unleash all kinds of larger angers. How ugly the temper flares could be, how cold the silences. I can’t pretend I miss the overt tensions that mushroomed so quickly between Ralph and me for years and years of our marriage. But I am not sure what to think about our lopsided relationship now. So much responsibility on my side, so much contentment on his. So much resentment on my side, so much loving dependence on his. I can’t say I envy him, but sometimes I do.

TWO DISTURBING ALZHEIMER’S SPOUSE DREAMS

DREAM JPEG

 

I don’t usually remember my dreams but in the last week I had two about Ralph.

Dream 1.

I am in a school building with Ralph When he heads to the boy’s bathroom, I can’t follow him. But he doesn’t come out, and he doesn’t come out. I decide I must have been pre-occupied and not noticed him come through the door. Or maybe in the dream I am pre-occupied, enjoying myself, and then I realize I have  I missed him coming out the door. I start to search for him, walking down various corridors but stopping along the way to have small happy adventures. I never find him and wonder how I’ll explain to people that I mislaid him. When I woke I felt unsettled, as if the dream needed to be finished. I felt the need to double check that Ralph was indeed in the bed, safely asleep.

Dream 2.

Ralph announces he has fallen in love with another woman and asks my permission to get a divorce. The woman and I talk. I ask if she is prepared to take care of Ralph if/when his condition worsens. She says yes. She seems perfectly nice and normal, but I find it odd that Ralph says this woman, whom I evidently know slightly, is his intellectual soul mate. I feel a little hurt since before we married or even dated  we were intellectual buddies.

My stronger reaction, though, is curiosity. I ask Ralph what he talks about to the woman, who wears a 1950s-style black dress and wide brimmed hat. After all,  he and I don’t have more than perfunctory conversations most of the time. Ralph tells me they talk about real estate, the subject that used to obsess him but that he now avoids discussing—somehow in the dream I think to myself about our awake life. We are in a room together, maybe a restaurant, where I begin to worry about the woman’s motives–is she after his money [that part of the dream probably comes from reading Anne Patchett’s The Dutch House in which a second wife cuts her husband’s kids out of their inheritance]. Suddenly I realize Ralph’s kids are protected by his will. Relieved, I decide to let the divorce happen. He and the woman are very grateful. I am glad to be making Ralph  happy and also happy that now I can move to a smaller house and live alone.

One dream of losing Ralph physically, one of losing him emotionally. Losing or chasing to lose. What these dreams reveal is both obvious and murky:  ambivalence, ambivalence, ambivalence.

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

future.jpg

 

I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

AM I TOO TOUGH ON RALPH, OR NOT TOUGH ENOUGH?–THE MCI/ALZHEIMER’S BALANCING ACT

dirty dishesRalph has been skipping the last item on his daily lifelist: putting Lola in her kennel bed before he goes to bed at night.Obviously this is a small issue and I am capable of putting her to bed instead. But I don’t want to. For one thing, I like not having to do it myself, like being off duty all together for an hour or two before I go to bed. More important, I like the idea that Ralph contributes, however small the gesture, to the practicalities of our life together.

The thing is, maybe I need to face that Ralph is no longer capable of remembering to put the dog to bed at night. Maybe his cognitive energy is used up by seven pm and I should not nag him the way I do now (and yes, sometimes if he’s still awake reading in bed, I make him get out and see to Lola).  And this realization makes me re-considering what I should be expecting from Ralph.

Never mind big tasks like running the tractor—our tractor crisis two years ago will never reoccur because Ralph avoids messing with the tractor at all now; thank goodness I have found someone who not only runs it but also can maintain it.  As for medium tasks, like changing light bulbs, I don’t expect Ralph to carry them out any more although once in a while he’ll surprise me like the other day when he was able to attach the propane tank thing to the grill (although he couldn’t remember how to turn on the grill itself).

It’s the small tasks that I’ve been counting on for normalcy. But can I really? It is not that Ralph is unwilling. If anything, he is more willing to than he was in his prime when he downright refused to pitch in any time he found it inconvenient. Now if I ask him to take a turn making coffee, he agrees. If I ask him to help bring in groceries, he agrees. If I ask him to help clear the dishes he agrees. He is happy to help.

But, and it is a big BUT, his ability to follow through can be haphazard. He’ll agree but immediately forget and I’ll be annoyed. While counting to ten I debate in my head whether to nag him or let it pass. Or he’ll agree but do the job halfway. Or look at me with a forlorn expression. The other day when I asked him to unpack his small suitcase after a weekend trip to visit friends (a trip he enjoyed immensely although I dragged him there against his wishes), he gave me that look Unpack a suitcase? Put my socks in the sock drawer? I quickly backed off but he caught my look back and asked outright, “What, you don’t think I can unpack?” “Of course you can.” So he unpacked. But none of the clothes ended up where they belong.

Again, not a big deal. And not that he doesn’t ever follow through, not that he doesn’t sometimes surprise me with his competence, the same way he sometimes surprises me by remembering a conversation I assume he’s forgotten. But there are so many other examples of disappointment. So many times I get annoyed because he doesn’t follow through. So many times I wonder Should I trust him even to try a task he seems reluctant to try? Is he unwilling or unable? So many times I wonder Am I being too tough? Am I being too coddling?

Of course, I am being both and neither. I never seem to calibrate the right balance because there isn’t one. Although Ralph appears more capable and competent some days than others, I have to face that his brain is going through its own climate change, a melting away sometimes indecipherable but undeniable. 

 

 

 

TAKING THINGS IN HAND

decision.jpg

 

So big confession: I have been in a great mood lately.

Is that allowed? I ask.

YES! I answer (except I can’t help that little gulp of uncertainty. Is someone whose spouse has a degenerative neurological condition allowed to be happy?)

Nothing dramatic has changed in our present to make me happier. Ralph seems pretty much the same although he now needs his written schedule of reminders in a way he didn’t a few months ago and I’m including more details. His energy also remains about the same, i.e. low. A glitch in the Emory study has held up his supply of experimental Ritalin but I haven’t noticed any drop—in retrospect I realize that the slight uptake I’d noticed before Christmas was more situational than medical and disappeared once he was home and back in his routine.

The change is in my focus. Facing that we were not going to end up in Apalachicola seems to have opened a door for me. The future may not be the one I planned, but it is lying out there for me to shape. There is a relief in acknowledging what I have to let go. So Ralph and I will not be travelling together (but really he never liked to travel to the same places I did) or going to movies together (see previous parenthesis). And yes, I will be making all decisions about our finances and health and homes and meals for that matter. And yes his location on the Alzheimer’s continuum will slide downward and there will be difficult choices to make. I see the clock ticking.

But taking things in hand has energized me.

I have made some decisions involving our rental properties, our main source of income, including renovations Ralph might not have done but are necessary for our millennial tenants who demand more than the hippies, slackers and gen-xers who used to rent from us.

More important, I have decided about our living situation. I have told Ralph we are moving to Nola in two years. Actually I have told him daily.

Conversation #1:

“In two years I’ll be too old to live isolated out here. The driving will be too difficult. I think we should move to Nola.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Maybe.”

Conversation #2:

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live isolated out and doing all the driving will be too difficult.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Well, I guess.”

Conversation #3,4,5,6…

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live here isolated and…

 

A real estate agent is coming by Monday to discuss a sales strategy for the farm (not an easy sell). Dreading having Ralph present and running off the agent in some of the ways he has run off various servicemen, I screwed up my courage this morning and told him about the meeting because I’m not ready to not tell.

“Do you want to be there?”

“Not really. You can take notes can’t you?”

So basically, Ralph has more or less acquiesced. I am left to handle the details (and keep reminding him the plan). The thought of moving and all it will take is daunting. But also exhilarating. So yes, I have been on Zillow quite a bit. But ironically, I’ve also found new enthusiasm for my life now. I have more going on in my professional life than in several years. And I’ve started drawing lessons and am sitting in front of pad and pencils instead of the television. I’m even dieting, sort of. Is this joy or an attack of mania, I’m not sure, but I don’t feel manic anxiety.

I know things will get more complicated. I know I am in for sorrow. But right now Ralph and I are traveling more or less together. I don’t mind being his navigator, car mechanic and chauffeur because I still have the luxury of being able to pursue my own interests.  As for Ralph, he’s willing, and less unhappy than I’d expected, to come along for the ride as long as he doesn’t have to drive.

Physical Illness Strikes Memoryland

sick

 

The laryngitis I had a month ago morphed into a hacking cough and a lot of congestion. For the next miserable, rainy week or so I grocery shopped and attended meetings I’d committed to—mostly at night and at least an hour away in Atlanta—then crawled home and let HGTV put me to sleep.

Finally after I went to the doctor who gave me a prescription. But it took another ten days, plus a change in prescription before I started feeling better. Meanwhile I had no choice but to take to my bed. What part burnout might have played is food for another post, but I had to let Ralph to fend for himself.

And he fended fine. He was very concerned. VERY concerned, in a way he never would have been when he was cognitively sound, sound. He worried aloud, What would I do without my Alice to take care of me.

Ever ten minutes he came into the bedroom to ask me if I was okay and if I needed anything. Usually I was trying to sleep actually and wished he would just leave me alone, but his heart was in the right place. He even brought me tea and toast. He ate sandwiches and the chicken soup I had (brilliantly if I say so myself) decided to make the day before I started feeling really bad. For several nights he slept in another room to avoid contagion, which was frankly also a nice respite because I wasn’t wakened during the night by his talking in his sleep.

And then the Saturday before Thanksgiving, as family began to drive up, I started to feel like myself. Hurray.

…We will skip over most of the details of the nine-day Thanksgiving we just completed this morning. Let’s just say that seven adults (all either related or married and all good at bickering), one teenager and a coughing, sneezing two-year-old trapped in a house twenty minutes from restaurants and shopping is not the best plan for holiday cheer….

Which brings us to today, or actually to the day before yesterday when Ralph started sneezing and coughing. Although so many people crowded into the house was difficult for him, Ralph loved being Bop to BabyBop and turned out to be something of a toddler whisperer, able to get BabyBop to eat when no one else could. The problem is that BabyBop is never without his germs and likes to share his food and drink with those he loves, like his Bop.

Or maybe I’m just trying to deflect responsibility since I am probably the one who got Ralph sick.

Because he is now the one in bed. And now I am the one going into the bedroom every hour or so to check if he is okay or needs anything, and he is the one saying LET ME SLEEP. A few minutes ago I told him that now I understood how he felt two weeks ago, and we laughed together at the role reversal.

Actually, he doesn’t have a fever the way I did, isn’t coughing as much as he was a day ago, and isn’t congested. But he is tired and feels as if he has a cold. This is the first time he’s had a physical problem in all the years since his cognitive impairment was diagnosed. And my reaction is different than it would have been pre-diagnosis. I realize he can’t take care of a relatively mild cold himself. I have to be around to make sure he drinks liquids and eats something and takes decongestants in a way. He is like a sick seven year old. Sweet and helpless.

And for the first time I have had to tell my daughter I can’t help her out of a babysitting jam because I can’t leave Ralph.

It’s not a big deal in a way, not leaving my husband alone when he has a cold, but it feels like a harbinger of things to come….

Oh no, I hear Ralph’s truck starting up. I would bet he is heading to the store for cigarettes (which he has not been smoking for obvious reasons). I better go catch him.