Tag Archives: Alzheimer’s symptoms

“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.

 

 

Ralph and Alice Move Just In Time to Stay In Place–Comic Relief in the Time of Corona

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Moving to a new city in the middle of a pandemic with a physically frail, cognitively impaired husband may not have been the wisest decision I ever made, but it was the only one available.

We’ve been here almost a week and every day has been crammed with incidents that make for fear, anxiety, but also a surprising amount of laughter. Problems that would be minor in normal times loom larger when they can’t be fixed in the foreseeable future; problems that would freak me out in normal times seem humorously trivial now. What follows are just a few of the highs and lows of Alice and Ralph’s misadventures because I’ve already forgotten the rest; there have been so many.

THURSDAY  We arrived much later in the afternoon than I’d hoped but with Ralph and the dogs in better spirits than I’d expected. Workmen were still here finishing the dog’s fence and putting locks on doors before heading into c-virus hibernation. The bedroom, bath and kitchen were ready though, and Ralph lay down oblivious while I met for two hours with our contractor. He wore what looked like a futuristic gas mask as he led me through the rest of the house pointing out all the work that would have to wait until who knows when. Around 8pm I woke Ralph to share a microwaved frozen pizza –fortunately my daughter had stocked our kitchen with food to make sure I was not tempted to shop.

Close to the front lines herself as a nurse practitioner, she’s very protective of her father and me. Ahead of the government, she has mandated absolute isolation: o grocery shopping or even taking the dogs on walks. And because she works at a health clinic, she and everyone in her family, including babyRalph, are off limits. I go to bed wondering if coming to New Orleans was a huge mistake.

FRIDAY   I’m up with sun telling myself optimistically that it’s a new day. I can’t wait to try out our new white and shiny shower (with a doorway big enough for a wheelchair if that time comes). I turn on the spigot. It falls into my hand. I call my contractor who forgot to tell me he’d ordered a new spigot that would be put on later today. No shower obviously so I get dressed.  Oops, I seem to have left the bag with my underwear and socks in Georgia. I am laughing as I text about my “crises” to friends.

Ralph doesn’t mind skipping a shower; he is remarkably happy lying in bed with the dogs nearby.  But to avoid contact with the plumber in the afternoon, I drag Ralph to sit in the kitchen where he watches through his window as two guys finish a few exterior tasks before leaving for the duration.

Why are they wearing masks?”

The virus.”

Right, The SARS thing?” SARS it will remain in this house.

My daughter checks in from work at the clinic where her boss has just described their work as ‘staring at a freight train heading full speed straight at you.’

A bit rattled, I put a pot on the stove to start dinner listening to a news report that mentions the governor’s new regulations about social contact. Click click but no gas. I light matches. No gas and no gas smell. I take a breath and text our contractor although I know he’s had nothing to do with the stove, which came with the house. I quickly teach myself my first lesson in how to use the intimidating microwave that also came with the house.

SATURDAY   We’re schedule to get WIFI/TV this morning but given the governor’s order limiting work to essential services, I am not sure the installer will show, or if I want him to. He shows. I follow him around at a distance with a bottle of disinfectant. It’s exciting to have TV and WIFI. I fire up my Mac no problem, but when I try to turn on my business computer, it doesn’t recognize my password.  I start to panic. All our finances are locked in the computer. I take a breath; the tech guys who helped me set the password days before we moved (who needed a password on a farm?) aren’t available until Monday. I face the reality that there’s nothing I can do and that if necessaary I’ll bookkeep by hand the way I used to as long as necessary. The good new remains Ralph.  He’s forgotten all about his back pain, also that he was sick last week. He willingly sits outside with me to drink our morning coffee. He doesn’t miss the farm one iota.

The washing machine is the next thing I can’t get to work. I text the contractor, thinking to myself I can hand wash from now on if I have to.  The contractor face times with me. First he figures out why the stove is not coming on and that there no way for me to get it fixed for now. Oh well, I have an oven, a microwave, and a George Forman grill, plus an electric teakettle; I’ll get by. As for the washing machine, once we check the breakers, my contractor has me snake my arm with the phone around the machine so he can see behind. It’s unplugged! Twenty minutes later I find my bag of underwear. I am ECSTATIC.

SUNDAY (or maybe it was still Saturday, my days are beginning to run together) My daughter calls. Her boss at the clinic has tested positive. Telemedicine is going into place. Did I mention my daughter is pregnant?  I am sick with ANXIETY.

I do not tell Ralph.

He is oblivious. Physically he’s back to what he was before his hospitalization, but mentally he’s made a shift. It’s subtle, a matter of passivity more than memory. If I don’t give him a plate or a cup he doesn’t eat or drink. If I don’t order him into the shower (now working and lovely), he stays unwashed.

MONDAY  I am about to call the tech guys about my computer but give it one last shot punching in every combination I can come up with. It turns on. Maybe anxiety had me typing in wrong letters the other or maybe I have a sticky key. I don’t know but I’m not turning that machine off any time soon. I have a relatively pleasant day avoiding the world outside. I do editing, I work on a writing assignment. I unpack more boxes. I’m more relaxed than I have been in a month, but being in this new environment and out of our old routine forces me to see more clearly how much my relationship with Ralph has deteriorated as a partnership. The silence.

TUESDAY  After looking out my window and realizing that I am looking into my neighbor’s bathroom at an inopportune moment, I figure out how to hang some impromptu curtains. I am proud of myself, becoming someone who solves physical problems. I also solve a problem concerning Ralph’s prescription drug insurance. All before 10 am. But I’ve been so busy I haven’t checked on Ralph, assuming he’d call me on his cell if he needed me. I go to the bedroom where he is fine, but his phone is dead. No charge even plugged into a working outlet. I call Verizon, am put on hold, then on call back status during which time I take a quick shower. Finally a technician comes on. It takes us five minutes to fix the problem. I think to myself that I’m glad I’ve sent up a landline for Ralph to use in an emergency. Of course now I need to order an actual landline phone.

WEDNESDAY Here we are. Ralph in his realm downstairs, me up here doing work and texting friends. I’ve been entertaining my friends with daily blow-by-blow accounts of our foibles. The humor may be only skin deep—it feels flimsy in retelling here—but it is what works to pull us through.  And oddly, Ralph is almost an inspiration. He’s so damn relaxed!  I am trying to stay relaxed too, by worrying about only those issues I can actually problem solve, like cooking rice in the microwave. Or the fact that Ralph’s phone just died again.

OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

 

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The good news:

Ralph got out of the hospital on Friday afternoon seven days after he was admitted, once the infectious disease lab was able to pinpoint the bacteria and determine which antibiotic he needed. By the time he left his white blood count was back to normal and he had a sense of humor back. The nurses loved him.

 

The bad news:

The bacterium was rare and hard to pinpoint because it came from the mouth of dogs. Since the onset of his MCI, Ralph has had an obsessive need to scratch at the dry skin on his hands, to the point of breaking the skin, so it is likely the infection came from a lick for one of his two best friends.

 

Other bad news:

Ralph has to receive intravenous antibiotics daily until March 16 and because I know my limitations as a nurse, I am not attempting to give them at home. Instead, I will be driving him to get them at the infusion center at the hospital every morning. Our plans to move to Nola on March 5 are obviously delayed.

 

Other good news:

  1. 1. We get to wake up to this view again; since Ralph can’t climb upstairs at this point, I moved the guestroom bed down.
  2. 2. I have learned to ask for help and have received it from so many people. Friends will come stay with Ralph for two nights so I can go to Nola just long enough to meet the movers and set up furniture as originally scheduled. An other friend will bring the dogs down in his truck—actually what was until today Rick’s truck because I have arranged to sell it to him, one large chore off my list!

 

Both good and bad news:

  1. 1. Ralph is happy about the sale and shows no happiness about no longer driving; I am torn between being glad Ralph is not putting up an unpleasant fight and sad that one more part of his identity has been chipped away.
  2. 2. Ralph has stopped smoking cold turkey because a cat scan showed tiny nodules on his lungs that could either be a result of the infection or pre-cancerous. He will have a follow up CAT scan around the 16th to see if the nodules have shrunk. Meanwhile the doctors told Ralph no smoking and he agreed. Of course he doesn’t exactly remember but he continues to agree every time I remind him. And he is not showing any major symptoms of withdrawal.
  3. He also has not asked for a beer, which is good, but then again he has very little appetite in general, which is not so good.

 

Beyond Good or Bad

Ralph’s bout with physical infection has given me a lot to think about as I try to evaluate how much being on the Alzheimer’s spectrum might have affected his physical health and how this physical crisis might affect the progression of his Alzheimer’s.

According to medical people, being on the Alzheimer’s spectrum probably did make him more vulnerable to illness and/or caused his reaction to be more extreme. It certainly made it harder for me to detect something was seriously wrong with Ralph. I am pretty sure the signs of the infection would have been obvious sooner in someone without Alzheimer’s; after all what might seem abnormal in others—sleeping too much, inattentiveness to one’s physical state, lack of appetite, mental withdrawal—seemed almost normal if exaggerated behavior in Ralph. And he never articulated that he was feeling sick.  I don’t feel guilty that I didn’t catch on sooner; if anything I feel lucky I caught on when I did.

What concerns me more now is the ambiguity of his condition now. I have talked about adjusting to “the new normal” as Ralph and our relationship change. Now Ralph is very changed. The no smoking, no beer, no driving are in their way shocking changes. I have professed to wish for them, yet now I see them as scary sign posts if permanent. IF–I suspect Ralph’s taste for beer will return and a fight over smoking may loom in the future.

What I don’t know is whether this physical crisis will have a permanent effect on Ralph physically and mentally. That he is incredibly weak at the moment is to be expected while recovering from a major bacterial infection and while taking strong antibiotics. But I don’t trust he will bounce back. He cannot hold onto the memory of having been sick, has already forgotten the hospital, cannot remember he has an IV portal in his arm.

(In fact as I was writing this he got out of bed and wandered in to where I am typing.

What are you doing I asked.

I need to go to the store for cigarettes.

Remember, you’ve stopped.

Why?

Because of the CAT scan. They found nodules and said you can’t smoke any more.

Oh, I forgot.

And with that he wandered back to bed).

I don’t know if being weakened physically will cause him to lose ground cognitively.

I do know that our relationship has changed, at least for now. I cannot make even the small demands I did ten days ago. I bring him his pills. I feed the dogs and care for them. I tempt him with snacks every few house because he will skip eating unless I remind him. I stand at the shower to make sure he keeps his arm dry. He has no interest in the world or the people in his life. He wants me nearby as his guide—each time the nurse asked him what year it was, he looked at me to give him the answer—but we have almost no conversation. And while I might leave him to go to the store or run a few errands, I cannot imagine leaving him overnight with a life list to follow. The life list is on hiatus.

I assume some of his strength will return. But this episode has exposed his fragility and vulnerability. Also how far he has drifted from the Ralph he used to be. Whether the decline is in the last week, whether it’s permanent, or whether I just didn’t notice before remains to be seen…

Missing the View Ralph Has Forgotten

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This is the view Ralph and I have woken up to for over 25 years but no more. Although we don’t move for another two weeks, I took the mattress and box springs to Nola last week (so Rick will have a bed waiting for him when we arrive). For the last days here we are sleeping in our guest room in the antique double bed we slept in when we first married. A kind of poetic justice.

Waking to that view, though, was always my favorite thing about living on this farm I came to against my wishes; at times it was the only thing I liked about living here. Since there are no neighbors except a horse or two, we never bothered with curtains, and whatever the weather, sunny or cloudy or stormy, it was wonderful to sit in bed with a cup of coffee looking out.

Our bedroom always had a good view, but about 12 years ago, around the time we became empty nesters, we did some renovating and enlarged our span of windows. Afterwards Ralph and I went through a period of intense bird watching. We set up feeders outside the windows and armed our selves with bird-watching guides. Ralph made sure the feeders stayed filled. We had struggled in our marriage, particularly because we seemed to have few interests in common except our work and kids, but with the kids gone, we had more time before heading to work and the bird watching became a shared focus.

By the time Ralph was first diagnosed with MCI, evenings were when he functioned least well. We stopped hanging out together much once the dinner dishes were cleared. But mornings, he was sharper. I made a point always to be available from eight, when he woke up, til about nine. We’d bring each other coffee in bed—sometimes I made it but just as often he would—and spend an hour listening to NPR and talking about the view out the window. During that relaxed hour I would bring up subjects that might be harder to discuss other times of day. Ralph’s memory seemed better in the morning and he would converse with surprising clarity and even humor. Then around nine, he’d want his first cigarette and I’d start my day.

I’ve been telling myself we still have that schedule, but we don’t. I still wake up at sixish and read or do work. But now I have to force him to wake up, and although he goes to bed earlier and earlier, it’s getting harder and harder to get him going by eight. And even if I do, I end up drinking coffee alone because he goes to the porch to smoke as soon as he’s up. More than once lately, I’ve come home from a morning errand to find him still in his bathrobe on the porch as noon approaches.

This is a change that has crept up on us, but as I prepare us to move, I’m suddenly aware and worried that there are more changes I’ve been ignoring. A decrease in conversation, less care in how he’s dressed,  a vacancy around his eyes. Tonight he seemed particularly out of it—even momentarily confused where to find the milk he always pours himself for dinner.    I asked if something was wrong. He said he felt unwell, but when I pressed him, he said he didn’t ache or hurt,  just felt “spacey.”

I want to think he was just having a moment due to the strain of the move. The truth I am afraid to face is that Ralph is accepting the move because he has withdrawn so deeply into himself. He gets tested next week so I guess I’ll find out then.

Meanwhile, what I already know is that Ralph has forgotten the birds and the view. Funny to think I’m the one who will miss them.

Our New Best Alzheimer’s Buddies

 

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So the other we got together with a couple we met years ago and always liked although we saw each other mostly at parties thrown by mutual friends. Or at the grocery store—actually I have run into the couple surprising often at Publix, every six months or so. We always end up talking in the aisle for ages, promising to call to make a date that never happens.

We got together this time through another mutual friend who thought the couple might be interested in buying our farm. At her suggestion I called “Jo” and “Jordan” who invited me to stop by their house in town to talk. I had another meeting scheduled at 2 so I dropped by at one for a quick visit. Once I sat down, it became clear we had more than real estate to discuss.

One of them Jo has been having some memory and confusion issues. Their internist, (who happens to be my internist as well) recently sent them to a local psychologist who gave Jo the ten minute memory test, which Jo passed.  But Jo and Jordan both sense something is wrong. And they know, because I told them one day in the bread aisle, about Ralph’s diagnosis.

So for an hour they talked about the problems Jo has been having and asked me questions in an atmosphere of mutual trust. Before I rushed to my other appointment, we agreed they should come out to see our farm the next day (although it was clear they were not going to buy it). In the meantime I printed out research information and the phone numbers of resources.

The next afternoon Ralph and I spent several hours with Jo and Jordan. It was different from any other socializing we have done in years.  We all chatted a little. Than while Ralph took Jordan off to show off the farm, I spent time with Jo. Then we all spent time talking together, going deep and honest fast. We shared details and insights about our current situation. Ralph was articulate about what he feels and struggles with, as was Jo. Whether or not Jo’s cognitive problems will lead to a diagnosis similar to Ralph’s, they share similar difficulties and it was obviously they found describing their problems to each other easier than they have to outsider.

“Oh yeah, I get that.” was the mood of the afternoon.

So what made the afternoon so special, was that it was so relaxing. Ralph and Jo didn’t feel forced to be together, the way Ralph felt when he the support group (at my insistence), but it was obvious he and Jo could talk openly in a way Jo never would normally in a group. There was no anxiety about trying to keep up.  Instead there was laughter over the kind of memory jokes my friends and family would probably never make in their sensitivity to Ralph’s condition. But we could with another couple facing the same issues. God it felt good.

Of course, the bittersweet news is that we’re moving away soon, but meanwhile I envision spending quite a bit of time with our new best friends. And once we move, finding Alzheimer’s friends is going to be a priority, one I’ve not really considered until now.

Alzheimer’s Drip by Drip by Drip

 

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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

Ralph, Captain Emiritus–An Alzheimer’s Transition Moment

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For as long as I’ve known him, Ralph’s love of  boats and boating pretty much summed up his identity:

A lover of the outdoors.    A sportsman who preferred active participation in physical activity to watching from his couch.     A competitor who found competing against himself (or a fish) as rewarding as competing against others.    A problem-solver whose knack for fixing  machinery matched his love of tinker.    A perfectionist who kept his gear shipshape.    A leader who reveled in being captain of his crew.

Early in our marriage, as soon as he had a little extra spending money, Ralph bought his first boat, a small daysailer. I was never a boater and I remember at least one miserable ride in the early days of my first pregnancy. Then he traded up for a racing sailboat he named HARD RAIN after the Dylan song—apropos since every time I was dragged onboard, not often,  a storm showed up too.  For years Ralph sailed almost every weekend, frequently both Saturday and Sunday, with my close friends as his crew, while I stayed home with our toddler(s); if you think you catch a whiff of  lingering resentment on my part, you might be right. But boy, Ralph enjoyed himself. He always came home whistling with a story to a tell

Nevertheless, around the time we moved to the farm, he sold the sailboat–a matter of distance and weekend farm chores. But in the early nineties we started spending time on the Forgotten Coast, that still unspoiled stretch of Northwest Florida . Ralph being Ralph, we soon owned a lot with a house trailer near a boat ramp. Ralph bought a used skiff with a motor that seemed to die a lot, at least when I was around. I hated that boat. Then he found his beloved Paper Moon, a boat he could maneuver in both shallow streams and the sometimes rough waves of Apalachicola Bay. We moved to a piece of land with a dock on the bay and a garage apartment, but no actual house. By then Ralph and some pals had formed a Fishing Club that met for frequent “tournaments” although active participation dwindled over time to mainly Ralph and his even more obsessive first mate The–Other-Ralph.

Then our daughter introduced us to the new man in her life. Ralph, ever distrustful of her various would-be suitors, accepted this one immediately for a simple reason: he was a serious fisherman, a fly fisherman no less. Fly Fisherman also hit it off with The-Other-Ralph.  The three started fishing together and Fly Fisherman willingly took on more and more responsibility for the less fun tasks like prepping the boat, organizing the lunch, and cleaning afterwards.

Over the last few years Ralph, who used to stay out on the water for ten hours straight whatever the weather, began coming home for lunch after a couple of hours, then finding reasons not to go back out in the afternoon with the others. By last spring when The-Other-Ralph’s family and ours gathered for a week of beach and boat, my Ralph found reasons not to fish at all—the heat was bothering him, he had a stomachache. Fly Fisherman ended up taking The-Other-Ralph and his family members out on the boat without Ralph. Afterwards Fly Fisherman cleaned and made repairs as well.

Since then Ralph has not stepped foot on the boat. When I suggested trips to Apalachicola he was less than enthusiastic. We’d get down there and he might cast his line from the dock but he would avoid even visiting the garage where the boat is stored. On a visit last fall, my daughter was dismayed to find the garage in disrepair with mouse droppings and nibbles on the seats.

Ralph’s boating days were clearly over. Still, if he could not quite admit that the boat had become a responsibility he didn’t need and could not longer handle, I wasn’t going to force the issue. And the idea of selling such an essential part of Ralph’s identity was an anathema. (Also daunting since I’d be the one in charge.) So what to do?

With Ralph, The-Other-Ralph and Fly Fisherman about to have milestone birthdays, although thirty years apart, my daughter had a suggestion.

Ralph looked at me askance when I mentioned the possible birthday present. “What if I want to use it?”

“You’ll get Fly Fisherman to take you out.”

The more we talked it over—and believe me we talked it over many times a day, often repeating the same exact sentences—the more Ralph liked the idea. No, loved the idea. Once our two sons, who have no interest in boats, and The-Other-Ralph gave their enthusiastic blessing, Ralph became gleefully obsessed with giving the boat to Fly Fisherman.

Here was his out–a  way to acknowledge his loss of interest, not to mention stamina and capability,  without losing dignity. He embraced as his own choice the possibility of keeping Paper Moon in the family while handing over the actual responsibility. He told everyone that he’d decided to give the boat to Fly Fisherman. The problem became making sure Ralph didn’t spill the beans about what we wanted to be a birthday surprise, but somehow the word did not get back to Fly Fisherman.

Last week, Ralph sent a birthday card to Fly Fisherman with a photograph of  Paper Moon on the cover and a short, funny note inside  i explaining n his own words that he was turning over the enclosed boat title.

He signed it, then had a thought and added a PS.

I still expect to be addressed as Captain when aboard.”

I breathed a sigh of relief both for the smooth transition and the proof that Ralph was still Ralph.

Taking Stock For Future Reference

In preparation for Ralph taking part in testing of the new Merck anti-plague drug, our nurse at the Emory Brain Center  asked me to make a list for the nurse to show Ralph’s current baseline. Of course, I put it off (just as I often put off writing here because it means facing stuff I may not feel like facing). But now  the list is done and it seems worth sharing.

WHAT RALPH CONTINUES TO DO:

Make small repairs around the house when asked; Pick vegetables and do light farmwork when asked; Take his meds on his own from his filled weekly pillbox; Make his own cold breakfast and lunch; Make coffee as needed; Use the microwave; Buy beer at the convenience store; Feed the dogs daily; Drive around the farm in his truck to “walk” the dogs; Dress, bathe, shave etc on his own; Talk on the phone at length to his sister and oldest son; Attend his art class; Walk occasionally on a farm path circuit; Watch nightly news and Jeopardy over dinner; Listen to NPR on the radio; Read quality full length books of fiction and non-fiction; Use his credit card (as long as no tips are involved); Pay cash for small purchases; Cut his own hair ; Turn on the gas grill and change the gas canister when needed; Interact socially with people who visit or whom we visit; Fish from a dock; Clean fish he catches; Share stories from his childhood; Offer witty one-liners out of the blue; Analyze a situation/problem presented to him and show insight even though he forgets his analysis (and the problem) shortly afterwards

WHAT RALPH CAN’T DO ANYMORE:

Pay attention to business or financial matters—important since his professional life was all about real estate investing and managing; Use the stove; Use the grill although he does turn it on when I ask; Drive on his own except those places noted above or under duress and if I am there to give him directions; Use his boat; Hunt ; Go to movies—says he finds them “boring”; Watch narrative television dramas or comedies except on rare occasions; Listen to music on his own; Keep up with or show interest in family and friend activities; Remember details of relationship history with friends

 

WHAT RALPH MAY OR MAY NOT DO:

He may still be able to play guitar, but shows no interest; He says he can drive tractor (and was told it would be ok by Stephanie) but avoids doing so.; While he goes to art class, his output has greatly diminished; he spends most of his “painting” time sitting in his office smoking and listening to talk radio; He claims to take walks but I have not witnessed him walking

 

RALPH’S TEMPERAMENT CHANGES:

Extremely passive—used to be extremely assertive; Never gets angry—used to be hot tempered; Without curiosity—used to be extremely curious and factually knowledgeable ; Emotionally totally focused on his dogs; Less outgoing but more jolly most of the time.  

I kind of love having this information down in black and white and red and blue and green.  In a year or two or five, I will look back at what I recorded–whether with relief that the Merck pill has worked to keep Ralph at his current activity level or in bittersweet nostalgia for this time when the Can Dos on Ralph’s list are several lines  longer than the Can’t Dos and Maybes list combined. May it stay this way for as long as possible.

 

MOWING A PATH INTO NEW TERRITORY

 

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Last week, at my request, my younger brother flew down from Pennsylvania and spent two full days on our John Deere tractor bush-hogging our fields.

That I had to ask my brother, or anyone, to come represents a turning point. Two years ago, already diagnosed, Ralph spent every day for months mowing the same fields to have them pristine for our daughter’s wedding. A year ago, he was still mowing regularly. But he has not driven the tractor since last spring. And over the summer the wheat/weed mixture grew higher than an elephant’s eye.

I asked during our last Emory Brain Center check up if Ralph should quit mowing, and was told mowing was fine. Although he has stopped driving most places out of fear of getting lost, his motor skills are fully operational.

Ralph’s problem was not ability, but motivation. About every two days we discussed the fields. I’d ask him if he was sure he was up to mowing. He’d say yes…yes but he was too tired or had a stomachache or it was too hot out or too chilly so he was planning on starting tomorrow. Then tomorrow would come and we’d have a similar discussion.

This is the pattern that the spouse part of me has had the most difficulty accepting. I was supposed to be the procrastinator in our relationship, at least in non-emotional areas. I was the one who put off unpleasant chores; Ralph was the one whose mantra was BE A CLOSER, who taught his kids by example to follow through and get the job done because he always did. Not anymore; each time a situation comes up, from helping to clear the dinner dishes to mowing the fields, I want to believe him when he agrees so pleasantly to do whatever I’ve asked. And then of course he never does and I become increasingly frustrated, mostly at myself for falling into the habit of depending on him.

As usual, over the last few weeks the reality slowly seeped into my brain that for whatever reason—because he simply forgets or lacks the energy or has unspoken anxiety about his ability to remember how—Ralph was never going to mow those fields.

And the only person I know with tractor skills is my youngest brother who has always shared with Ralph a love of machines—they spent a joyous summer over thirty years ago taking apart three elderly Triumphs to build two refurbished ones. But over the last thirty years the relationship between the two, once extremely close, became increasing problematic. In fact several years back tensions intensified to the point that the two of them got into a physical altercation during a family wedding.

Of course Ralph doesn’t remember the altercation and has only a vague recollection of there ever being any tension. And my brother has been more than happy to patch things up. He has visited several times recently while passing through. I called and asked if I could pay his way down to help. He agreed immediately.

I told Ralph my brother was stopping by on his way to a business meeting in Florida and suggested maybe we could Tom Sawyer him into helping out around the farm. Ralph thought that might be a good idea and was remarkably unsuspicious on the first morning when my brother voiced an interest in mowing. For the next day and a half my brother mowed and Ralph sat on the porch.

For the first few hours, my brother thought Ralph seemed pretty much as he remembered but that has time went on there were increasing signs of Ralph’s memory lapses and his less definable personality change from Get Things Done Man to Ho Hum Whatever Guy—when a tractor hose broke, Ralph’s response was ‘We’ll deal with it tomorrow’ until my brother reminded him that he was leaving tomorrow and needed to mow today. But the two of them hung out together and generally had a lovely time.

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Boy those fields look great. Maybe we could get him to come back and mow a couple of times a year.” That’s Ralph talking not me. Over the last couple of days, he has made this suggestion a lot.

 

Does Ralph realize the mowing visit was a set up? I don’t know and am not sure I want to ask. We may have found our way into new don’t-ask-don’t-tell territory where we don’t acknowledge but accommodate ourselves to Ralph’s limitations while maintaining his dignity. Or perhaps I am kidding myself about his awareness.

The Business of Remembering…A Sense of Time and Identity

The business of remembering what you did that day, or what you might want to do the next, I think, is essential for creating an overview of your life – that overview is what fuels plan-making and that ties in deeply with identity.”

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In case you missed it, this comment was made about my last post by  Jabberwalk, who writes with great insight and honesty at her own site Caregiving in the Forest.I can’t stop mulling over the implications.

Time is the trickiest part of life for Ralph. Almost the first thing he asks each morning is what day of the week it is. Sometimes he remembers what he did or parts of what he did yesterday, sometimes he doesn’t. Often he misremembers. He doesn’t like the confusion his lousy short-term memory breeds, but he lives with it by asking for a rehash over and over hoping for clarity that seldom comes.

We all fear the loss of short-term memory, but the problem of future memory is in some ways more troubling. When Ralph looks forward to what comes next, what he seems to see is an anxiety-producing obstacle course. Since he can’t hold on to the facts of place and time, he becomes increasingly anxious each time he asks again Where? but mostly When? The issue for me becomes how much information does he need, how much is a burden.

Not only do I make the scheduling decisions, but I also end up structuring what he thinks about that schedule, and therefore what he thinks about period. In other words, I am taking away or at least shrinking his overview.

His sense of identity has certainly shrunk. Yes, he is an increasingly passionate dog lover because dogs demand so little and remember on their own. And he remains a husband, not an equal partner perhaps but genuinely grateful to his wife for filling in the blanks. He is still a father too, although his memory of the kids’ childhoods is sketchy and he keeps up less and less with their adult lives because he finds tracking the details so difficult. He was glad to let go of his professional identity and hand me that responsibility early on. While he can be charming in social encounters, his interest in friendship and being a friend is limited by his difficulty remembering who people are, their names of course but more importantly, their connection to him. While still capable of moments of remarkable perception, he is no longer interested in being an intellectual or armchair philosopher because it requires remembering a train of thought.

I remember lots of trains of thought. I carry around layers of overview based on the different roles I play—wife, writer, friend, woman, businessperson, spiritual seeker, reader, political thinker, mother (Note that caregiver is not on this quickly written list—a Freudian slip I just noticed myself).

These roles operate within and are influenced by the various ways I frame my time. There is the constant background hum of long-term, generalized plans still under construction (i.e. How much longer until we need to downsize? What are my options if/when needs professional care?). More immediately, there is the weekly erasable-board calendar that Ralph and I live by day-to-day; there is the monthly wall calendar as well as the one on my phone. And there is the semi-conscious minute-by-minute and hourly tracking most of us fold into our routine (unless we are on the Alzheimer’s continuum and struggle to remember whether we ate lunch already) without much conscious thought.

But what has always been almost second nature, like making coffee as soon as I get up in the morning, is getting more difficult. Lately I have trouble both keeping my plans organized and keeping a hold on my sense of self within those plans, largely because of the important role-identity I just caught myself forgetting to include above. Caregiver, leads to another identity: AliceasRalph.

Keeping Ralph’s life organized and reminding him what he is doing on a given day means I also remind him why and how he feels, which means I make an effort to get into his head to understand his mindset. Thus is born AliceasRalph, who often ends up as confused as he is by his confusion about whatever I am trying to explain. Our weirdly opaque discussions can sound like the old WHO’S ON FIRST comedy routine.

Ralph’s overview of his life, if not lost entirely, is definitely tangled. And because I am both Alice and AliceasRalph, my overview is pretty tangled too. Not hopelessly, but moving forward requires vigilance as I ceaselessly work to untangle the delicate filaments without breaking them.

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