Tag Archives: Alzheimer’s symptoms

Alzheimer’s Drip by Drip by Drip

 

faucet jpg

 

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

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

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

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

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

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

Ralph, Captain Emiritus–An Alzheimer’s Transition Moment

IMG_0001_2.jpg

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

 

tractorjpg

 

 

 

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.

field

 

 

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.”

shutterstock_155952698.jpg

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.

shutterstock_147393377

What Is Normal Anyway?

people_in_the_park_204264 Is this the couple  Ralph and I are becoming? Jaunty hats and sensible shoes? Would it be so bad if we were them? Don’t they  look  happy and normal? But what is normal?

As I look at the life Ralph and I share now, I can’t help wondering.

When he was first diagnosed with relatively advanced Mild Cognitive Impairment, Ralph was in his mid-sixties and considered young to be jumping on the Alzheimer’s escalator. Now he is approaching 70 and those  symptoms—fogginess, lack of energy, loss of short-term memory, disengagement—that seemed so out of keeping with our peers a few years ago fall more comfortably into the gray area called “the aging process.”

And after all aging  is normal and even desirable  (the alternative being death) although it hits us each differently. For example, I called Ralph’s oldest friend the other day; the two have drifted out of touch over the years but Ralph still talks affectionately about Jim and I thought reconnecting  and reminiscing would be nice for them both to do while Ralph still can. Jim was excited at the prospect of re-connecting with Ralph but we couldn’t actually talk until  he put in his special hearing aid for phone use.

In that moment it occurred to me as it has before that while Ralph remains on his plateau of not-quite-Alzheimer’s-yet, his issues are not radically different from other men his age, at least according to what I hear from the women my age who live with them. So many of my friends complain that their husbands are slowing down faster than they are, that they no longer want to travel, that they’re becoming stay-at-homes, that they are more passive than they used to be, that they need to be cared for, that they require a lot of patience.

And we women have our own issues, or at least I do. The sleep issue—never more than six hours and often less, with the resulting sense of dull tiredness and desire for an afternoon nap. A nap for God’s sake! Ugh. The driving issue—is my driving getting worse or am I just more nervous? The concentration issue—much harder to turn off the wifi and buckle down (although maybe this problem will go away after election day). And of course the fashion issue—not that I ever dressed fashionably or learned to use make up but nowI either look as if I’m trying too hard or not hard enough.

The thing is, I still do feel younger, still want to fight aging, while Ralph has embraced it. Our day-to-day life has fallen into a frankly pretty comfortable pattern set largely by Ralph’s needs and wants. The pattern scares me because I find it enticingly easy to fill so much time dealing with minutia concerning managing Ralph’s care, our finances and our household, especially since my social life has actually expanded as Ralph’s has contracted. If this is this my new normal, it is not all bad? But I worry, where is my zest for the intellectual and creative ambitions that have always defined me before?

In a weird way I am almost heartened personally by the current election season in which two of my peers slug it out with vigorous, and in one case even brutal, energy (although I’m not saying their “normal” is the one I want). I want to believe I can still find that kind of passion and energy in myself. But maybe not, and maybe that’s okay.

Sorting out what is normal under my circumstances, or what is normal under any individual’s individual circumstances, is not easy, but it is where I find myself.

(PS. Last nightI asked Ralph, as I always do, if he’d talked to anyone during the day. He said no. I checked his phone. There was Jim’s number at the top of received calls; evidently they’d talked for over half an hour.)

Ralph “Passes” the Test to Participate in Alzheimer’s Study

testing.jpg

The research nurse at Emory’s Brain Center called a week ago asking if we—Ralph and I because caregivers play an active role—would be interested in participating in a research study.  The nurse had already looked at Ralph’s chart and said she thought he’d be a good fit.

The study is  being conducted by the pharmaceutical company Merck  on a possible treatment to slow the progression of Alzheimer’s. As the Merck brochure says, “This study is designed to test the idea that inhibiting a specific enzyme, BACE, may slow or stop the progression of Alzheimer’s disease. The drug in this study, MK-8931, is a BACE inhibitor, which means it helps stop the BACE enzyme from producing amyloid beta peptides. Amyloid plaque deposits in the brain may be the underlying cause of Alzheimer’s disease. By inhibiting the actions of the BACE enzyme, it may in turn help stop the formation of those amyloid plaque deposits.”

In other words, the study hopes to find a way to slow down the build up of the plaque that is assumed to cause Alzheimer’s and that is evident in Ralph’s brain according to the spinal tap his doctor administered several years ago.

I glanced at Ralph, who was on the couch having his afternoon nap, and said yes, I thought we might like to participate. I was actually quite excited. In the past Ralph has not qualified for studies and drug trials like this because of his MRI problem—the bb pellet that has been lodged in his tongue since a shooting accident when he was eight-years-old not only uncomfortably heats up during the procedure but distorts results—but this particular study has dropped the MRI requirement.

The nurse immediately emailed the study’s descriptions and consent forms, which I read and explained to Ralph. And explained again.

“I hate taking pills.”/“You won’t even notice the extra pill.”

“How often will I have to go see the doctor?”/“Every other month.”

“What if I’m stuck with the placebo? It’ll be a waste of time?”/“But the study will give you the real pill afterwards, and in any case, the study will benefit others, like your kids who are at genetic risk.”

“Ok, it sounds good. But I hate taking pills.” The familiar loop repeated itself over and over, and each time he ended up agreeing to participate, if with tepid enthusiasm.

Three days later we were at Emory. (Evidently the study, which has already been going for a year or two, needed a few extra last-minute entries and the deadline got pushed up so we were a rush job.)

Ralph took two memory/cognitive tests which have qualified him although “passing the test” is not the term I’d use exactly, at least not for the second test in which the cut off number had to do with having too much memory. Ralph evidently “passed” with flying colors because his memory score was very low. I have to say when the nurse whispered the news to me, my heart sank a little.

Now we are waiting for Merck to look at the scores before scheduling some physical tests. If Ralph makes it through through those, he will begin taking the extra pill with his Namenda and Donepezil daily. There is a one-third chance or receiving a placebo, a one-third chance of receiving a lowish dosage of the medication, and a one-third chance of receiving a higher dosage. I will be expected to keep track of his progress in some form that has not yet been clarified—I warned the research nurse that I may be travelling some in January after my daughter gives birth, but she said that would not be a problem.

Once Ralph starts the pill, we will meet every two months with medical personnel, including his neurologist, a dermatologist and the research nurse, for the next two years. When the two years are up, if he’s been taking a placebo, Ralph will then receive the higher dosage of the actual medication; otherwise he will continue on the dosage he started with.

I see no downside (except, if I am honest, the extra effort required on my part) and plenty of pluses. Because we are entering the study late, there is plenty of knowledge about side effects—minor and rare. The frequent visits to Emory are a great excuse to get Ralph out of the house and into the world. Plus he will be receiving more detailed health check ups on a more frequent basis. We will no doubt have a better sense of where he is on the continuum than we do now.

And, although he says he doesn’t care, the idea of doing something useful for others, of being part of a cause larger than himself, will give him a sense of purpose; even at Emory the other day I saw the shift from anxiety (which may have caused his low memory score) to energetic good cheer as he interacted with staff.

And if the medication makes a noticeable difference in Ralph’s condition, well that would be great too. Fingers crossed.