When Forgetting The Past Becomes Remembering the Present Wrong

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I come home at five in the afternoon to find my husband showered, shaved, and dressed in a clean shirt.

“So, Alice, when do we have to leave for the birthday party”

Sounds great, doesn’t it, Ralph getting ready on his own?

Only problem is that the  party he is talking about is the dinner I wrote about here weeks ago. The one he clearly didn’t enjoy attending at the time.

“We aren’t going to a birthday party.”

“Are you sure. Well, why did I think we were?” Puzzlement all over his usually placid face.

“I’m don’t know. We had dinner for H’s retirement three weeks ago.”

“We did? I don’t remember.” It is almost physical, how hard he is thinking before a memory takes shape. “Oh yeah, it was boring. Well, I’m relieved. I spent all afternoon dreading the birthday party.”

“Since you’re dressed, why don’t we go out to supper?”

“I don’t feel like going out. It’s too late.”

“Are you sure.” He is spiffed up after all, and it would be good to get him out of the house and his rut. Also, frankly, I wouldn’t mind not having to cook.

“No, I don’t feel like going out anywhere.” He shakes his head, standing by the door to the porch. “You sure you didn’t tell me we had to go to a party tonight. Why would I think we were going to a party?”

“I promise, we went to dinner for H’s retirement three weeks ago. Maybe you had a dream while napping and it felt real?”

“Maybe.” He shrugs and heads onto the porch, unlit cigarette already  in one hand, beer in the other, dog at his heels. We will repeat the same conversation throughout dinner but now, clearly shaken, he needs time to himself (as do I).

The way that facts once forgotten can’t be retrieved has become our normal problem as an Alzheimer’s couple, annoying but easily handled. But now Ralph has presented me with a created, or rather mis-created memory. A new process has misremembered, twisted and reshaped a fact before lodging it in Ralph’s brain. Will our new normal problem encompass not simply a loss of Ralph’s sense of the past but a reshaping of his present reality into something unpredictable, unreliable and disturbing.

More About Working Out The Equation of an Alzheimer’s Marriage

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Ralph and I spent the last few days eating and sleeping in the same house and interacting with the same people and yet our weekends could not have been more different.

Our town faced a crisis this weekend because the same Neo-Nazi organization that marched in Charlottesville, Virginia, decided to hold a rally here. The city government felt obligated to issue a permit under Freedom of Speech laws (but foolishly did not think of charging them to compensate for the cost of such a rally to the town). In response local citizens, including me, organized responses to the rally. Folks gathered on the town square on Friday night to support the local businesses, which would have to be shuttered during the rally, and to help children chalk humanitarian messages on the walkways in the park where the Neo-Nazis would be convening. Saturday there was a peaceful protest against the rally and also a Unity Gathering, an ecumenical coming together of citizens of various faiths, races, and ethnicities.

I attended all of these events. Ralph attended none.

Although I discussed the situation as little as I could, I probably discussed it more than I should have. After all, I was embroiled and it was on all I was thinking about.

On Saturday (and probably even Friday night) Ralph was filled with anxiety. Safety is paramount to him these days. “Be Safe” is his mantra to me every time I leave the house, even if only to drive to the convenience store. And to be honest, there was reason for concern Saturday. Fortunately, the husband of a friend who was also attending the Saturday gatherings stayed with him during the afternoon. And more fortunately, the number of Neo-Nazis who showed up (40 minutes late to their own two-hour rally, by the way) was smaller than expected; the anti-racist protest peaceful; and the Unity gathering was uplifting in the best ways. Ralph enjoyed his quiet day and I ended up enjoying my very active one. By the next morning he’d pretty much forgotten there’d been anything unusual going on.

But that was not the end of the weekend.

Sunday night we were invited to dinner with three couples we see regularly. The get togethers have always fit the same pattern, Ralph always complaining ahead about having to go, and then telling me what a wonderful time he’s had afterward.

Not this time. As soon as we got in the car to head home, Ralph rolled down his window, pulled out a cigarette and announced in no uncertain terms, “I was ready to leave an hour ago.”

And the truth is, so was I. As much as I love and enjoy my friends, I was a tense wreck the whole time because I could sense Ralph’s misery. In the past Ralph has told his own stories and jokes and enjoyed the jokes and stories of the others, but he was much quieter last night. He would laugh when the rest of us laughed at a joke but I could tell he was not sure what was funny. He would be just that little bit too quiet while listening to someone’s story or some casual banter so I knew he wasn’t really following it. There was a new divide I could not avoid notice widening between him and everyone else. I found myself mediating, trying to cover for him much more than I’ve had to in the past. And it was exhausting.

I have read all the literature about keeping people with cognitive impairment as mentally active as possible, but I have slowly become less pushy. And I am facing that groups of more than three are now an overload for Ralph, especially when we are away from home, but maybe even at home.

So no more making him attend events where he is out of his comfort zone. Which doesn’t necessarily mean I will stop attending, does it? That is the equation I need to work out.

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

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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.