All posts by MCI Alice

Alzheimer’s Shrinks Ralph’s World and Ralph

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I have been focused a lot recently on my reactions to Ralph’s slide along the Alzheimer’s continuum. But after a weekend apart, I am struck anew how much Ralph’s world has changed.

His memory seems to be holding, at least as far as facts are concerned. Not that it is good or anything like normal, but it remains generally on the same plateau it’s sat on for a while now. He repeats himself; he asks the same questions over and over. He remembers certain details from a conversation and obsesses on them. And he repeatedly forgets not only conversations but also what might seem large basic facts. While I was away he spoke on the phone to a friend who was disturbed that Ralph seemed to think I was home. “He’s never seemed confused that way before,” she said to me with concern. His forgetting can seem like confusion, but really it is not. When he called me to ask me to pick up some dog food (which I had forgotten to do before leaving for the weekend) and I joked that I could get the dog food in New Orleans, he laughed and admitted he’d forgotten and then went on with following his daily routine “life list” perfectly well.

But while he has remained on this memory plateau, the sands have been shifting beneath him. The lack of memory has changed who he is.

So while I would define his forgetting for the moment that I was not in town as a memory problem, not a confusion problem, I have seen him confused, and I think he is more prone to confusion than he used to be. When he can’t remember, he grows anxious, and when he grows anxious he has even more trouble remembering. A spiral top starts spinning. Similarly, sometimes he can’t grasp what I’m trying to explain because his anxiety about not understanding twists him into an emotional knot. (And I realize that when I talk to others now, I tend to over-explain out of habit, but that’s another subject.)

He is also fearful–in part because his weakening memory leaves him uncertain from moment to moment, but also because he’s become a person with a very limited world and like many confined to limited worlds he has a fear of the unknown.

And hand in hand with fear is a sluggish passivity, a disinterest in what lies beyond the immediate scope of his memory . He has less and less physical, mental or emotional energy to engage with others. I have noticed that his sister and oldest son, both of whom  used to talk to Ralph frequently and enthusiastically, seldom call now. And I understand. It is hard to talk to someone who only wants to repeat the same few conversations over and over. Patience wears thin. People have their own lives to get on with.

Of course, I often resent and feel trapped by Ralph’s limitations myself. But today I am sad–for Ralph and for how his identity is being chipped away in small but steady increments. Does he know? I’m not sure. It feels as if I were watching the act of sculpture in reverse—the vibrant image of a man being returned to stone in slow motion.

The Pronouns of Living with an Alzheimer’s Spouse

HE I WE  I HE WE  WE I HE  HE WE I  HEWE  HE WE I  HE WE I  WE HE I  HE WE HE  

Ralph and I always were independent spirits. While he sent out a strong magnetic force, I fought to maintain my sense of self. I often lost, of course. Whether he was being charming or belligerent, his energy, could suck up all the air in a room; I’d find myself seething at my invisibility. So I fought playing second fiddle, and in many ways the struggle between us made me stronger as an individual. Just a few years before Ralph’s diagnosis, the two of us discovered a level mutual respect and appreciation. There was Ralph (him), there was Alice(me) and there was Ralph and Alice(us),which balanced the individuals Ralph and Alice and made us both surprisingly happy.

While it lasted, which wasn’t long. The pronouns say it all.

When I talk about Ralph now, I tend to say/write/think We have a doctor appointment or We have a problem remembering the day of the week or We don’t like to break our routine. It is unnerving when I catch myself and realize I’ve become like one of those people who refer to themselves in the third person. There is a blurring of of our identities and while I have a surface life away from Ralph, I’m less and less sure just who I am.

Of course, Ralph doesn’t worry about identity the same way at all. He has become more I-centered in his docile cognitive decline than he ever was in his aggressively self-centered prime. He has enough trouble keeping up with himself, holding on to an idea—I HAVE ART CLASS TODAY. DO I HAVE ART CLASS TODAY. I HAVE ART CLASS TODAY. I can almost see how hard his mind is working. He is not unlike loved ones I’ve watched struggling with major physical pain or a fatal illness. Ralph has no energy or capacity to worry about, or even be curious about others, especially me. His concentration on himself is a matter of survival, is beyond his power to change…

 

Intermission

because IT IS ART CLASS DAY and WE are out of green paint and Ralph has been asking and asking all morning but can’t go himself and doesn’t want to leave his chair so guess who must go to the store (or become too guilt-riddled)

 

…but I still resent the last 20 minutes each way plus 10 minutes buying and paying for his paint…Not only resent the time. Resent how I let myself be taken over by him. Resent the irony that Ralph is diminished and yet more center stage in my life than ever, that I carry so much of the weight and end up feeling invisible. That he defines my life.

 

That his life has become our life but not in the shared way I fantasized marriage would offer. That our pronouns do not tie us together in a bow but have become a tangle that leaves me both knotted and dangling.

Stasis Defines this Alzheimer’s Marriage, At Least for Now

Stasis (from Greek στάσις “a standing still”) may refer to: A state of stability, in which all forces are equal and opposing, therefore they cancel out each other. Stasis (political history), as defined by Thucydides as a set of symptoms indicating an internal disturbance in both individuals and states.” From Wikipedia

Well Ralph and I definitely fit the definition, which I looked up after one of those small moments that clarify the big picture

 

knox toddlerWhile face-timing with me this morning, BabyRalph threw a little tantrum when my daughter wouldn’t let him hold the phone. As he kicked his legs, my daughter laughed, “He is becoming a toddler.” My emotional reaction was “Oh no, I want him to stay an adorable baby forever.” But of course, I also want him to grow up and am excited by every developmental step he takes. Just now, I had the odd and uncomfortable realization that my wishes for Ralph follow parallel lines, only maybe in reverse.

Ralph has maintained his cognitive abilities on about the same level for long while now, around five years. This plateau has been an incredibly lucky break for us. When I read and talk to other caregivers whose loved ones were diagnosed and then nosedived quickly, I marvel at Ralph and my good fortune.

We still live a mostly normal life, at least on the surface. If anything, Ralph’s routine has hardened and within its walls he functions very well. I keep his pillbox filled, his clothes clean, and his meals prepared just as if I were any wife (well any wife in the 1950s, although my housecleaning and disposition fail the Leave It to Beaver test). He spends most of his day in his “office,” even if all he does in the “office” is listen to the radio and talk to his dogs. So I have plenty of free time to carry on my life. We eat dinner together watching Jeopardy and then he goes to bed.

This is not a hard life. Yes there is the underlying stress of his shot memory and his general cognitive decline, the loss of his curiosity and engagement with the world beyond our mailbox. But really, life could be so much harder. Living with Ralph is now like living with a child who is not going to grow up. Whose developmental steps if he takes any will be backward, toward a kind of funhouse version of babyhood.

As much as I want BabyRalph to stay my snuggly grandbaby, it is fun to imagine him big enough to pull that rake in the picture above. I cannot and don’t want to imagine Ralph’s future. And yet I also have to admit an ugly truth. I imagine what my life will be like when Ralph’s cognitive abilities deteriorate with horror but also sometimes with a kind of relief. The urge to get out of the stasis–which in the case of Alzheimer’s includes both standing still and inner disturbance–is real, even when I know the escape will be to a much darker, harder place.

When An Alzheimer’s Study Tanks

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We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.

Alzheimer’s By Phone and Life List

phone

 

 

Me: Hey, just checking in

Ralph: Hey, how is everyone.

Me: Fine. We’re all fine. R is working. J is away, remember. That’s why I’m here.

Ralph: Oh that’s right. I forgot.

Me: So what are you doing?

Ralph: Not much

Me: Did you take your pills?

Ralph: Yep I checked them off the life list. Today is Thursday right.

Me: It’s Friday.

Ralph: Oh Right. Well I’ll take them right now.

Pause while he goes to pillbox.

Ralph: I took them and checked them off.

Me: Great. Did you eat dinner (or lunch or breakfast)?

Ralph: Yep

Me: What did you eat.

Ralph: Whatever was on my Life List. How is everyone?

Me: Fine. BabyRalph is asleep

Ralph: How old is BabyRalph now?

Me: One. Remember we came to the birthday last week.

Ralph: Right, right. I forgot. How is everyone?

 

This is more or less the conversation I have three times a day when I am away from home and I have been away a lot lately, on the road between Ralph and BabyRalph, mixing up husband and grandbaby care. I also have a me-time weekend with college friends and a two-day family reunion coming up in the next six weeks. So that’s a lot of travelling and a lot of leaving Ralph at home.

 

I have mixed feelings of course. Travelling to be a NanaNanny is tiring but wonderful. At the reunion I get to take my son as my plus one since Ralph doesn’t travel. My friends and I have already planned every minute of our us-time weekend with restaurants and shopping and even some culture thrown in. l want to go on these trips and I feel guilty about going—but mostly guilty for not feeling more guilty.

 

Because the truth is that Ralph seems to thrive when I’m gone. He loves what he calls his Life List of activities and events to check off once accomplished. He takes his pills, he eats his meals that I have left, he sees the people who’ve arranged to visit. And he can see he has done so. The Life List works much better when I am not home. Ralph loves to check off his accomplishments. He has a sense of being in control of his life. But when I’m home that same checking off has the oppressive and demeaning effect of too much overseeing. He prefers the more passive activity of glancing twenty times a day at the calendar when I am home.

 

Of course, when I say thriving, “seems” is the operative word. Because when I’m gone, my impression of Ralph is based on phone calls. In the numerous phone calls each day he “seems” really pretty happy. And pretty cognitively together. He makes funny jokes and is more engaged in conversation than he ever is when we are sitting in the same room. If I ask a question he has a ready answer. He asks me questions about what I am doing that he never asks when we are together. We actually have fun, especially when I put him on speakerphone with BabyRalph (no face time with Ralph’s flip phone) and he can hear baby babbling and I explain what BabyRalph is doing. He is engaged.

 

Or maybe I am kidding myself to feel better about travelling. After all, I know that when he talks to other people, they find him equally engaging although as soon as he hangs up, he has no memory of what they talked about or often even than they talked. Yet, in the moment he seems engaged. Or maybe he is engaged.

 

In any case, I do know Ralph doesn’t mind getting to sit on the porch with the dogs listening to the news and smoking—or sitting with them in the car as he’s been doing during cold weather—without my nagging him to come inside. I suspect he prefers the simple premade dinners to my salad and chicken dinners and that he sneaks in extra nutty buddies for dessert.

 

And when I get home tomorrow he’ll say he’s glad to have me back before returning to his nap or the porch as if I’d never been away.

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

Living in the Moment

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BabyRalph’s first birthday is coming up at the end of the month. Ralph so enjoyed having the family together at Christmas that the day everyone left he actually agreed to drive with me  to New Orleans for the birthday celebration. Of course, I have avoided bringing up the coming trip too often to avoid unnecessary anxiety.

But yesterday I asked Ralph to help me put together one of BabyRalph’s birthday presents, a scooter. (I am not going to bore you with my own grandmother obsessing about finding the perfect present except to send a shout out to GG if you’re reading.) Of course, Ralph resisted at first, but as you can see he didn’t resist long. In fact he got totally into the project, which turned out to be the perfect level of difficulty: just easy enough for Ralph to manage and just challenging enough for him to feel good about managing. In other words, I actually could have put the scooter together myself, but not with Ralph’s innate ability using tools). It took less than an hour to complete the scooter and Ralph was really pleased. We both were.

So this morning, drinking coffee I brought up the scooter again. I told him the scooter would be his special GrandpaRalph present to BabyRalph, an idea he loved.

“So we’ll give it to him at Christmas, right?”

I looked at him and bit my tongue, the urge toward annoyed correction still strong.

“No his birthday,” I said as calmly as I could. “We just had Christmas.”

“Oh.” He looked flustered. “What month is this?”

“January.”

“Remember we had a big Christmas, everyone here.”

“Oh right, I forgot.” He nodded and sipped his coffee thinking. “Who came this year?”

I wonder how all those people who told me Ralph seemed cognitively better this Christmas would react to knowing he’d forgotten about their visit (and in some cases who they were to him) already.

In a nutshell this is Ralph, happy in the moment as long it lasts, his past and future fraying away daily.