Category Archives: Alzheimer caregiving

TAKING THINGS IN HAND

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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.

Closing Another Chapter

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Last week I finally made time to check the extent of damage to our hideaway in Apalachicola from Hurricane Michael back in October.

I’ve probably described “The Dollhouse” before, a small garage apartment on a large bay front lot with no house but a gazebo on the lawn and a sturdy fishing dock—so sturdy that it is one of the only docks in town still standing and useable. There’s no house because when Ralph bought the place, he decided he didn’t like the house so sold it for pennies, maybe $1000, to a buyer who transported the house ten miles down the road (I don’t know if it survived the hurricane and don’t have the heart to check). The lot itself had a high price tag when we bought it, against my wishes; he was adamant and in those days it was difficult to win an argument against him, but I now suspect Ralph’s cognitive abilities were already compromised or he would not have insisted on such a blatantly bad deal. Then again, it was 2007 when a lot of stupid investments were being made.

It was a terrible business decision but I grew to love the place. The stairway is long and steep, the rooms are tiny and there’s no central HVAC or Internet. The garage was built in the 1940s and we renovated by returning it as close to what it was originally as we could, complete with a red Formica kitchen counter. Everyone who has visited has fallen in love with the gemutlichkeit/fen shui. Ralph and I figured we’d end up spending more and more time there once we retired, him fishing, me becoming part of the artsy funky community.

I knew two trees fell on and through the roof in October because the contractor who agreed to handle repairs as soon as possible which was not going to be soon, and tarped the roof in the meantime, sent pictures. I kept putting off visiting, though, in part because I figured the locals had enough problems of their own and didn’t need a part resident gumming up the works, in part because I was afraid what I’d find, in part because I couldn’t find the free days. But last week, after a little problem since solved with Apalachicola sewage backing up onto the property, I realized I had to see things for myself.

I went without Ralph because he told me “I don’t think I feel like going.” Frankly, the idea of staying by myself for a night didn’t sound too bad.

And it wasn’t. The town seemed to be doing business pretty much as usual. There were signs of (re)construction everywhere. The shabby chic bed and breakfast where I stayed served late afternoon wine and cheese as well as breakfast. I met with my contractor, walked the property and loaded my car with paintings, linens, sentimentally important knickknacks and Ralph’s fishing journal. I walked around town sipping café con leche from my favorite coffee shop.

I also talked several times with a realtor I trust. She told me the property was worth a fraction of what we paid, but that if I could hold it another ten years, the value would probably rise.

I drove home admitting the reality that I already knew but hadn’t quite faced: The future we’d envisioned involving Apalachicola is not going to happen. Ralph and I are not going to be visiting, let alone retiring to Apalachicola. Once the apartment is livable, I will rent it full time to cover the taxes if nothing else.

I was filling pretty sad by the time I got home.

Ralph was on the porch smoking.

“How was New Orleans?”

“I was in Apalachicola.”

“Oh that’s right. I forgot,” he smiled.

When I explained the situation, he was not perturbed. He was not particularly interested at all. Basically he doesn’t care that he may never visit again. No, before I rent the apartment out I’m going to drag him down there for one farewell reunion visit with our fishing friends from Nashville.

And then I’m going to start discussing with him my plans for the farm, or rather my plans for our leaving it behind too.

Making Change in Dollars and Sense

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Today I sent Ralph on an errand. That’s right, I sent him off to perform a task without me there to oversee him. I gave him a twenty dollar bill and asked him to go to the gas station down the road, buy “something,” ie cigarettes, and bring me a five and 3 singles back with the change.

Asking Ralph to perform tasks is not something I do a lot obviously. He used to handle all the manual chores that required any skill. He did electrical, plumbing, carpentry, auto repair, you name it. He wouldn’t let me hang a picture because he didn’t think I could meet his critical standards. What he never did was run errands. He was not one to go out of his way on the way home from work to pick up milk, or a kid from school for that matter.

Now he is more than willing to do whatever I ask. Willing just not capable.

So my request was an experiment of sort. He still drives to the gas station daily for his cigarettes so getting there and back was not an issue. And willingness clearly was no problem; he offered to leave that minute. But remembering to bring me what I ask for…there we’ve had problems in the past. Even if I call him while he’s at the store or he calls me from the store to double check, he’s still likely to come home empty-handed. In the past he’s resisted taking written reminders but lately he’s become more dependent on his daily written life list.

So I wrote down a note, bring me change for this twenty.

He read the note. I reminded him I needed to end up with 8 dollars and he could keep the rest for his own use (I usually make sure he has about twenty dollars in his wallet at all times.) He looked with worry at the note again.

I took it back and wrote a new note. Bring me three 1$ bills and, one 5$ bill.

He read the note and nodded. I turned back to the stove as he put on his coat and started to the door. He stopped.

I can’t remember where I put the note or the twenty dollar bill.

He patted his jacket pockets. I checked his wallet. No note. I was about to write a new own when I saw a corner of the note poking up from the breast pocket of his shirt. I put note and cash in his wallet. He couldn’t buy his cigarettes without  seeing the note—well, unless he used his credit card, his usual payment method.

I sent him off with misgivings but fifteen minutes he was back. With 3 singles and a 5.He was casual as he handed over the bills, but I could sense he was feeling the same buzz of thrill and relief I was at a job well done.

Success is measured differently these days.

CHRISTMAS 2018: ALICE LESS IN CHARGE AND RALPH MORE ENGAGED (MAYBE)

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xmas

 

I admit I was sad not to have our traditional farm Christmas, mainly because I had no excuse to decorate the house with kitschy abandon (although a few, maybe 20, Santa Clauses did show up on shelves and mantles). But gathering with extended family in New Orleans proved much easier.

We stayed with our college age grandkids and our son in a rented duplex literally across the street from my daughter’s house, where she was in charge of festivities. Ralph and I both enjoyed ourselves, albeit separately and differently. While I was busy helping with preparations and messing around with five grandkids from almost two to almost 22, Ralph spent a lot of time smoking on the porch, either at my daughter’s house or the rental, while I could keep an eye him through my daughter’s front window. Therefore when he left the rental porch and headed down the street our first sunny afternoon, I was there to stop him.

“I’m just walking around the corner to buy cigarettes.”

“Not a good idea to go off in New Orleans by yourself.”

“I know the way there.”

He did know the way there: walk to the corner, take a right and keep straight two blocks until he got to the store. It was the way back, past those two blocks with corners that looked just like ours that be the problem. I sent my son to walk with him.

I sighed with relief and became more vigilant. I also made sure he was stocked with cigarettes. There were no more blips (well, except for a little one Christmas afternoon when we had to convince him that the store was closed).

As the holiday drew to a close, both my son and daughter commented that Ralph seemed much better than he had seemed at Thanksgiving. I had to admit I wasn’t sure I’d noticed.

It makes me nervous when anyone, but especially one of our kids, comments that Ralph seems better. No, I don’t get nervous; I get defensive.  Why do they think they can see something I’m missing?

So why did the kids see him as improved?

Well, for one thing they found him frighteningly disengaged at Thanksgiving. And they may be right. That holiday is a blur of houseguests, of cooking, cleaning, entertaining and babysitting while fighting off the remnants of congestion and cough. And given that Ralph was coming down with the cold that put him in bed for days once everyone left, he probably was more disengaged than I noticed–I do have a lingering image of Thanksgiving night, most of us gathered in a relaxed conversational circle in the living room and Ralph sitting alone just feet away in the television alcove bundled in outdoor wear staring at nothing.

Second, while I was focused on how much he slept and whether he drank too much beer at Christmas, they found him more engaged because around them he was. While all of us, Ralph in particular, could move easily back and forth across the narrow street between houses, our separate living space offered Ralph privacy both to nap whenever he wanted and to take the time he needed with his slow wake up rituals before walking over to my daughter’s house to offer everyone with some grandfatherly attention. Because he slept so much during the day, while the kids and grandkids were out exploring the neighborhood, in the evening he was rested enough to participate.

And third, by Christmas Ralph was back on his study meds, which he’d stopped taking a week of so before Thanksgiving due to scheduling issues. The study is on the value of ADHD drugs in treating apathy in those on the Alzheimer’s spectrum, and I didn’t think those little red pills were working, but now I wonder. Or maybe it was just the combination of good weather, good company, and an undemanding change of scenery. As we were packing up to leave, Ralph said how much he liked visiting New Orleans.

“Well, maybe you could start visiting more often with me.” I was thinking ahead to Mardi Gras when I plan to help grandbaby sit.

“I’d like that.” He nodded with what seemed like enthusiasm.

Now we’re home. He’s back in his mostly undemanding routine. When I brought up going back down to Nola, he looked at me askance.

“I don’t think so.”

“But you had such a good time at Christmas.”

“It was okay,” he shrugged. “But I have no interest in going again.”

The Case of the Missing Car Keys: A Clash of Memories

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“It’s the unacknowledgement of a reality that is constantly hitting us, as spouses, in the face, but for which reasonable, constructive dialogue is either ineffective or impossible any more. Quite draining, and erodes the bond we knew and loved with our spouses.”–Jabberwalky08, responding to my last post, expresses the predicament of the spouse caregiver beautifully.

 

So Ralph’s car keys are missing. Actually he couldn’t find them the morning after his evening of too many beers, but I didn’t think too much about it when I wrote last because I assumed they’d show up. They haven’t

That first morning I’d already left the house when Ralph discovered he couldn’t find his keys. I told him where the extra set was and he seemed mollified. But that afternoon when he still had not found them, he was upset.

“You don’t remember where you put them when you got them out of my car?” Ralph asked as I helped him look. His tone was level and very polite, as if he was trying to avoid embarrassing me.

“But I didn’t get them out of your car.”

“Ok, but if you had where would you put them?”

“I would hang them on the key hook with the other key.”

“That doesn’t make sense since you’d want to hide themfrom me.”

“But I didn’t want to hide them, because I didn’t get them out of the car.”

“I remember you getting them out of the car. You were afraid I’d drive inebriated.”

“No, I had not reason to be afraid because you went straight to lie down. Anyway, I was holding raw chicken breasts when you came in the house. Don’t you remember?” Stupid question to ask, I know.

“I remember you getting the keys.”

“I didn’t get your keys.”

“But if you did, where would you hide them.”

Are you getting bored and frustrated yet?

This conversation, or a longer version, was held and repeated in several variations every time we were together. Ralph always remained remarkably calm, probably because he didn’t remember asking or answering the same questions two minutes ago. I became increasingly annoyed. “Which one of us has memory issues?” I blurted out at one point.

I have learned over time that what is remembered by someone with cognitive impairment can be just as problematic as what is forgotten. But now we were on a new level of looping memory.  We’d become a microcosm of what pundits are so busy discussing about facts, alternative facts, news and fake news. I knew I had not been out to Ralph’s car, taken his keys and hidden them. But he knew I had.

Ralph can be very convincing when he believes something, and his certainty was stronger than mine. After all, I have the niggling awareness that there have been enough occasions when I have done something similar—hiding beer cans for instance on a daily basis. I didn’t take the keys this time, but I could have and might in the future.

So I began to question myself. Could I have done something with his keys and forgotten? Was my memory going. 

NO, I really couldn’t have and didn’t. And NO, my memory is not less trustworthy than Ralph’s

BUT there was no reconciling my sense of reality and Ralph’s and no arguing to a comfortable conclusion.

It would have been a darkly depressing state of affairs except that in saying I’d taken his keys, Ralph was also acknowledging that he’d drunk too much–that the drinking caused the loss of the keys, whether by his hand or mine. That knowledge has made him more willing, at least for now, to follow my rules and schedule. Last night as he headed to the porch, I nagged him to make a check on his life list to account for the beer he was holding. He merely shrugged, but a minute later he came back inside.

“Thanks for  working so hard to keep me alive.”

I was speechless. For a moment we were living in the same reality. Then, lulled into thinking we could chat, I mentioned that our older grandchildren were arriving on Thursday.

“Why are they coming?”

“Christmas.”

“Is it Christmas? Oh so is everyone coming for Christmas?”

“No, we’re all going to New Orleans on Friday.”

“We are? Oh, I forgot.”

It has been twenty-four hours since Ralph has mentioned the missing keys; that’s good news but the bad news may be that he’s forgotten he lost them. And because we live on different planes of communication, I can’t bring myself to ask him.

Back FromWhat Felt Like One Brink to Face Another

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As usual we balance on the teeter-totter of good news and bad.

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Ralph’s visit to Emory last week was a bit worrisome. The social worker noticed the same change in his communication that I’d been noticing. He was not exactly monosyllabic but offered much less information than usual. When I explained that he’d been in bed for a week, without his usual dosage of nicotine or caffeine, we agreed that it might be situational blip but that I should watch his lack of energy and engagement. It could be situational, but what worried me was that the temporary setback would set off a permanent slide. I was nervous. Ralph definitely seemed sluggish the next couple of day. I had to prod him to take his pills, to take his shower, to eat his lunch. But he has always been negatively affected by the kind of dreary weather were having and to my relief when the sun finally came out, his energy definitely ticked up.  I still had some niggling doubts because he seemed a bit foggy in the evenings, but then again we were still both a little stuffed up and coughing.

Then two days ago he shocked me by announcing. “I’m looking forward to Christmas with everyone in New Orleans. That should be fun.”

Ralph looking forward to travel? Ralph looking forward to anything? Wow. He was back to his old self, well not his old old self but at least his self of three weeks ago if not a touch more lively. I breathed a sigh of relief.

Of course, being back to his self of three weeks ago meant he was back to cigarettes and beer. And spending more time in his office away from his wife’s prying. And instead of sitting on the cold porch in the late afternoon, he began sitting in his truck where he could run the heat. I nagged him some, but mostly I turned a semi-blind eye. To be honest I didn’t have the energy to fight him.

(Except over the cigarette smell, which I had forgotten how much I hate but that’s another story.)

And last night we had the kind of crisis we’ve avoided for quite a while. He shambled into the house for dinner, stumbling against the wall and just short of incoherent. In other words drunk on lite beer. At least I think he was. I was worried that maybe it was something else, but no, it was beer overindulgence because once he ate he was more or less fine.

If he didn’t have the cognitive impairment, I’d…well he does have it.

So we talked calmly. I was stern and he contrite. He agreed again, to have no more than four beers a day. No beer at all unless I was there to keep count. So no more keeping beer outside the house, whether in the office or the truck. He agreed.

I reminded him this morning. Of course he didn’t remember last night, except his hand hurt, and that was enough to prove my point. Again he agreed. I drove to an appointment. He called to ask where his car keys were. I said I didn’t have them. He was sure I did. I drove home a bit later and found a new 12-case in his truck. He’d used the extra keys in the mudroom. But he was now chastened and suggested I go ahead and take the case of beer out of his car. He came to the house at four as we’d agreed. Everything is calm.

Sort of.  To watch him as carefully as he may need requires limiting myself in ways I frankly don’t want to. I feel a wave of resentment along with the standard guilt that I have been doing an inadequate job. I have already made one big change:

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I’m putting the life list I always make for him while I’m away in service everyday now. And the list itself is longer now, including more daily activities, and also including a check off for beers 1 thru 4.

We’ll see how long this lasts. He got home at 3:30 this afternoon. It’s 5:15 now and he’s on beer #4.

Physical Illness in Memoryland Part 2 Or How Sick Is Ralph Anyway?

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I’ve lost track how many days have passed since I had to stop writing a post because Ralph was heading off in his truck. I didn’t catch him but he was back in fifteen minutes. He had headed to his office for a pack of cigarettes. He smoked one, had a beer and went back to bed.

He  followed the same routine for the next six days: in bed most of the day until shortly before supper. Each afternoon he smoked one cigarette and has one beer and then ate a hearty meal before a second cigarette and back to bed. During the day I brought him turkey soup, glasses of water, cups of tea, and cold medicine. He coughed occasionally but not that much. He blew his nose when I reminded him it might be a good idea. When I asked him if he felt better or if the cold seemed to be going away, he considered before answering yes, he did feel better. But every day when I suggested it might be nice to take a hot shower or sit up a bit he said, “In a bit. I’m resting now.”

On Friday, concerned that maybe I was missing something, I called his doctor to see if he should start an antibiotic since his smoking might make him more vulnerable. I was told that his symptoms as I described them didn’t warrant antibiotics. Yesterday was rainy so I didn’t even suggest getting out of bed, hoping a little extra babying would get him over the hump.

And sure enough he slept through the night without a cough or sniffle (irksome since I’m still coughing myself awake). This morning I told him I was meeting a friend for a quick breakfast and running a couple of errands I put off yesterday.

“Are you sure you’re up to it?”

“Up to what? I’m just having breakfast and going to the drugstore and ATM.”

“I thought you were sick.”

“No, you’re the one who has been sick with a cold this week.”

“Oh right, I forgot.”

“So you’re getting over your cold.”

“Yea, I think I am.” He nodded. “I feel better.”

When I got home two hours later, he was still in bed. I suggested a shower. He thought about it.

“In a bit. I’m resting now.”

After he ate lunch, I again suggested he take a shower. “It’s a sunny, warm day and a little fresh air wouldn’t hurt,” I cajoled.

“In a bit. I’m resting now.”

The thing is. I don’t think he’s down to the last remnants of his cold. I also think that the drastic cut in his intake of nicotine, caffeine and beer is affecting his energy level; he’s probably in a kind of withdrawal, which is obviously a good thing in that maybe he won’t go back to as many cigarettes or beers a day, but meanwhile my instinct tells me that if we’re not careful this total non-activity could become the newest normal.

But what if I am misreading the situation. What if I am being cold and heartless. Fortunately he’s got an Emory appointment which means 1., he has to get out of bed and 2., I’ll find out if I’m wrong and he’s actually sick.

Still, this is another glimpse of the future when determining what Ralph’s capability—how hard to push him and when to let him be—will be increasingly difficult.

Physical Illness Strikes Memoryland

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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.

LARYNGITIS– VERBAL AND MENTAL

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CAN'T TALK

I have not written for several weeks. I have thought about posting of course. There have been plenty of incidents with Ralph to describe, trips to doctors, visits from friends, tractor crises*, funny conversations (i.e.: me: ”Sitting on the porch to smoke in the morning in your boxer shorts might not be a great idea.” Ralph: “If a car turns up the driveway I’ll see it and go in the house.” “But they’ll see you too.” “So what?” Indeed, so what?). . I would lie in bed in the morning thinking about a situation that I wanted to share, but when I sat down to write I would get distracted. Or with increasing frequency, I wouldn’t make it to my computer I wouldn’t make it to my computer at all.

Then I got a bad cold/flu complete with laryngitis. Of course that didn’t affect words (not) coming from my typing fingers only from my mouth, but it feels pretty apropos. Both a symptom and a metaphor for my condition and Ralph’s.

In Ralph’s case he has a version of mental laryngitis. There is no way he can get beyond the blockage. He cannot get from here to there mentally. So although I have told him 15 or 20 times in the space of a morning that x=x, he keeps repeating that x=y. Each time he says x=y, I correct him. Each time he says, Right, I forgot. And each time I become a little bit more impatient.

(Needless to say, this morning we have been having a x=x/x=y issue concerning our lack of heat in the house. Ralph keeps asking what made our heater go out and I keep reminding him that I actually turned it off on purpose. In fact, he is not wrong—the system is broken—but the complexity of the situation, that the system has sent our electric usage meter soaring and I turned it off until a technician can find the problem, overloads his memory systems. As I was writing this tech guy came and Ralph started to tell him that the heat was broken; I re-explained and have sent him to his office.)

But my impatience dissipates when I visualize Ralph with laryngitis, especially if I do so while I have it myself. I can feel what it is like to have something caught in whatever the passage leads from memory to thought, not unlike the words caught in the passage between my brain and my mouth (or my typing finger, let’s be honest) Laryngitis is isolating, but in an oddly dreamy way also escapist because it is so straightforward; you cannot make yourself speak without having a voice. So I watch Ralph sitting beside me yet slightly removed with new understanding. He has realized that certain passages are blocked and he can’t unblock them.

As for me and my laryngitis, I am hoarse but talking again. But I have also realized that I have some blockage too. I have found some memories of my life with Ralph now and in the past so difficult that I have silenced them and in doing so have silenced myself. The difference between Ralph and me is that I can, I hope and with some effort, chip away at my blockages, while Ralph may not have that option.

Alzheimer’s Leaves Caregiver Fishing For Memories Too

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

fishing

 

 

 

 

Ralph started the Ritalin study through Emory last week and I’m waiting to see some spurt of energy. He still lies down to “rest my eyes” at 5:30, resting them so deeply that I have to work to rouse him at 6:30 to eat dinner, after which he has his cigarette and goes back to sleep between 7:30 and 8. So my guess is that he’s been given the placebo.

Which is actually okay with me. As I acknowledged when our practitioner first said Ralph might qualify for this study, I have mixed feelings. (The future good that participation may do for others is a given but not really part of my equation.) I do not want to deprive Ralph of the chance for a more normal life or any chance to enjoy life more, and it is possible according to the nurses and social workers that Ritalin really will create a new zest for life.

But what if he ends up with more energy and zest than I have? That would be a cruel irony, wouldn’t it?  Because my energy is certainly depleted. I am not sure how much I can get away blaming my mental and physical exhaustion on caregiving.  Laziness and fear of challenge play their parts in drying up, or avoiding, my creative ambitions. But 15 years–10 as daughter/caretaker segueing, with a year or so of overlap, into five as spouse/caretaker–is a long time in what has never been a natural role for  me.

No matter, my competitive nature has turned  this worry into a positive goad.  To avoid being left in the dust, I am now revving up my energy with a new diet, more regular exercise, and visits to my therapist, whom I stopped seeing shortly before Ralph’s diagnosis when our relationship and my own sense of self finally seemed healthy.

Which brings me to my second worry, what if Ralph on Ritalin reverts back to the Ralph my therapist has reminded me he used to be: autocratic, critical, competitive, jealous. He wasn’t that bad, I laughed, but then bad memories began to surface. I could go on and on with a list of the examples of his faults and bad behavior I’ve begun to remember, and I would except just now I was interrupted by a phone call that’s thrown me completely off course….

The caller, JG, was starting out as a real estate agent when he met Ralph, then in his entrepreneurial prime. The two hit it off. , Over the years, I would hear Ralph talking to JG on the phone, explaining how to analyze values and bottom lines, offering professional advice but also yaking about fishing, another passion they shared. JG was younger and we never socialized much. But he did bring his wife and kids out to the farm for several visits shortly before they moved to north Florida. His wife turned out to be lovely—we had immediate rapport. His son, who was six or seven on that first visit, was obsessed with tractors, so he was in heaven when Ralph took him on the riding mower. (I don’t remember if they played on the tractor too.). The next visit, the boy was old enough to ride the mower himself, with a lot of supervision.

JG still comes to Atlanta regularly for business. Since we closed our business and turned the one rental property we still own over to his management company, JG has known, in vague terms, that Ralph was having some kind of problem and no longer actively involved in decision making, but he has never asked for details and I didn’t offer. He hasn’t seen or talked to Ralph for ages. The last time I talked to JG was a few years ago about a business issue. We were friendly but careful with each other.

He called today over another small business matter,. When he asked how Ralph was, I told him Ralph’s memory was holding stable.

“What’s wrong exactly. I never asked but is it Alzheimer’s.”

“On the continuum but still early stages,” I explained. “You might not even notice any change at first.”

“So he still fishes?” “No.”

“Oh, he can’t fish?” “No, he has no interest.”

“No interest?”

JG’s shocked silence was deafening. Here was someone who only knows Ralph as a man  avid about the activities he loves. I took back what I’d said about JG noticing—he would definitely register the changes  I’ve begun to take for granted.

JG began asking the questions he’d never asked. WeI had a long, serious discussion.

“I didn’t want to invade your privacy.” That made sense because I’d been vague about Ralph’s situation early on, not sure how much to share. (These days I share everything ad nauseum.)

“It is hard to imagine Ralph unengaged. He was so interested and involved. He was …” I could tell how upset, really upset, he was. “He was like an uncle… …”

I invited him visit, with his son who is now a 6’3” teenager but still loves to farm work. JG said he’s been waiting for the invitation and will make sure to come soon.

I hung up in a different state of mind from the one that set me writing this morning. I am feeling tender toward Ralph now, of course. And toward myself, realizing how tenuous my emotional memory of Ralph and who we were together, the good and the bad, has become.