Tag Archives: Alzheimer’s spouse stress

TWO DISTURBING ALZHEIMER’S SPOUSE DREAMS

DREAM JPEG

 

I don’t usually remember my dreams but in the last week I had two about Ralph.

Dream 1.

I am in a school building with Ralph When he heads to the boy’s bathroom, I can’t follow him. But he doesn’t come out, and he doesn’t come out. I decide I must have been pre-occupied and not noticed him come through the door. Or maybe in the dream I am pre-occupied, enjoying myself, and then I realize I have  I missed him coming out the door. I start to search for him, walking down various corridors but stopping along the way to have small happy adventures. I never find him and wonder how I’ll explain to people that I mislaid him. When I woke I felt unsettled, as if the dream needed to be finished. I felt the need to double check that Ralph was indeed in the bed, safely asleep.

Dream 2.

Ralph announces he has fallen in love with another woman and asks my permission to get a divorce. The woman and I talk. I ask if she is prepared to take care of Ralph if/when his condition worsens. She says yes. She seems perfectly nice and normal, but I find it odd that Ralph says this woman, whom I evidently know slightly, is his intellectual soul mate. I feel a little hurt since before we married or even dated  we were intellectual buddies.

My stronger reaction, though, is curiosity. I ask Ralph what he talks about to the woman, who wears a 1950s-style black dress and wide brimmed hat. After all,  he and I don’t have more than perfunctory conversations most of the time. Ralph tells me they talk about real estate, the subject that used to obsess him but that he now avoids discussing—somehow in the dream I think to myself about our awake life. We are in a room together, maybe a restaurant, where I begin to worry about the woman’s motives–is she after his money [that part of the dream probably comes from reading Anne Patchett’s The Dutch House in which a second wife cuts her husband’s kids out of their inheritance]. Suddenly I realize Ralph’s kids are protected by his will. Relieved, I decide to let the divorce happen. He and the woman are very grateful. I am glad to be making Ralph  happy and also happy that now I can move to a smaller house and live alone.

One dream of losing Ralph physically, one of losing him emotionally. Losing or chasing to lose. What these dreams reveal is both obvious and murky:  ambivalence, ambivalence, ambivalence.

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

future.jpg

 

I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

AM I TOO TOUGH ON RALPH, OR NOT TOUGH ENOUGH?–THE MCI/ALZHEIMER’S BALANCING ACT

dirty dishesRalph has been skipping the last item on his daily lifelist: putting Lola in her kennel bed before he goes to bed at night.Obviously this is a small issue and I am capable of putting her to bed instead. But I don’t want to. For one thing, I like not having to do it myself, like being off duty all together for an hour or two before I go to bed. More important, I like the idea that Ralph contributes, however small the gesture, to the practicalities of our life together.

The thing is, maybe I need to face that Ralph is no longer capable of remembering to put the dog to bed at night. Maybe his cognitive energy is used up by seven pm and I should not nag him the way I do now (and yes, sometimes if he’s still awake reading in bed, I make him get out and see to Lola).  And this realization makes me re-considering what I should be expecting from Ralph.

Never mind big tasks like running the tractor—our tractor crisis two years ago will never reoccur because Ralph avoids messing with the tractor at all now; thank goodness I have found someone who not only runs it but also can maintain it.  As for medium tasks, like changing light bulbs, I don’t expect Ralph to carry them out any more although once in a while he’ll surprise me like the other day when he was able to attach the propane tank thing to the grill (although he couldn’t remember how to turn on the grill itself).

It’s the small tasks that I’ve been counting on for normalcy. But can I really? It is not that Ralph is unwilling. If anything, he is more willing to than he was in his prime when he downright refused to pitch in any time he found it inconvenient. Now if I ask him to take a turn making coffee, he agrees. If I ask him to help bring in groceries, he agrees. If I ask him to help clear the dishes he agrees. He is happy to help.

But, and it is a big BUT, his ability to follow through can be haphazard. He’ll agree but immediately forget and I’ll be annoyed. While counting to ten I debate in my head whether to nag him or let it pass. Or he’ll agree but do the job halfway. Or look at me with a forlorn expression. The other day when I asked him to unpack his small suitcase after a weekend trip to visit friends (a trip he enjoyed immensely although I dragged him there against his wishes), he gave me that look Unpack a suitcase? Put my socks in the sock drawer? I quickly backed off but he caught my look back and asked outright, “What, you don’t think I can unpack?” “Of course you can.” So he unpacked. But none of the clothes ended up where they belong.

Again, not a big deal. And not that he doesn’t ever follow through, not that he doesn’t sometimes surprise me with his competence, the same way he sometimes surprises me by remembering a conversation I assume he’s forgotten. But there are so many other examples of disappointment. So many times I get annoyed because he doesn’t follow through. So many times I wonder Should I trust him even to try a task he seems reluctant to try? Is he unwilling or unable? So many times I wonder Am I being too tough? Am I being too coddling?

Of course, I am being both and neither. I never seem to calibrate the right balance because there isn’t one. Although Ralph appears more capable and competent some days than others, I have to face that his brain is going through its own climate change, a melting away sometimes indecipherable but undeniable. 

 

 

 

TAKING THINGS IN HAND

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So big confession: I have been in a great mood lately.

Is that allowed? I ask.

YES! I answer (except I can’t help that little gulp of uncertainty. Is someone whose spouse has a degenerative neurological condition allowed to be happy?)

Nothing dramatic has changed in our present to make me happier. Ralph seems pretty much the same although he now needs his written schedule of reminders in a way he didn’t a few months ago and I’m including more details. His energy also remains about the same, i.e. low. A glitch in the Emory study has held up his supply of experimental Ritalin but I haven’t noticed any drop—in retrospect I realize that the slight uptake I’d noticed before Christmas was more situational than medical and disappeared once he was home and back in his routine.

The change is in my focus. Facing that we were not going to end up in Apalachicola seems to have opened a door for me. The future may not be the one I planned, but it is lying out there for me to shape. There is a relief in acknowledging what I have to let go. So Ralph and I will not be travelling together (but really he never liked to travel to the same places I did) or going to movies together (see previous parenthesis). And yes, I will be making all decisions about our finances and health and homes and meals for that matter. And yes his location on the Alzheimer’s continuum will slide downward and there will be difficult choices to make. I see the clock ticking.

But taking things in hand has energized me.

I have made some decisions involving our rental properties, our main source of income, including renovations Ralph might not have done but are necessary for our millennial tenants who demand more than the hippies, slackers and gen-xers who used to rent from us.

More important, I have decided about our living situation. I have told Ralph we are moving to Nola in two years. Actually I have told him daily.

Conversation #1:

“In two years I’ll be too old to live isolated out here. The driving will be too difficult. I think we should move to Nola.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Maybe.”

Conversation #2:

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live isolated out and doing all the driving will be too difficult.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Well, I guess.”

Conversation #3,4,5,6…

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live here isolated and…

 

A real estate agent is coming by Monday to discuss a sales strategy for the farm (not an easy sell). Dreading having Ralph present and running off the agent in some of the ways he has run off various servicemen, I screwed up my courage this morning and told him about the meeting because I’m not ready to not tell.

“Do you want to be there?”

“Not really. You can take notes can’t you?”

So basically, Ralph has more or less acquiesced. I am left to handle the details (and keep reminding him the plan). The thought of moving and all it will take is daunting. But also exhilarating. So yes, I have been on Zillow quite a bit. But ironically, I’ve also found new enthusiasm for my life now. I have more going on in my professional life than in several years. And I’ve started drawing lessons and am sitting in front of pad and pencils instead of the television. I’m even dieting, sort of. Is this joy or an attack of mania, I’m not sure, but I don’t feel manic anxiety.

I know things will get more complicated. I know I am in for sorrow. But right now Ralph and I are traveling more or less together. I don’t mind being his navigator, car mechanic and chauffeur because I still have the luxury of being able to pursue my own interests.  As for Ralph, he’s willing, and less unhappy than I’d expected, to come along for the ride as long as he doesn’t have to drive.

Physical Illness Strikes Memoryland

sick

 

The laryngitis I had a month ago morphed into a hacking cough and a lot of congestion. For the next miserable, rainy week or so I grocery shopped and attended meetings I’d committed to—mostly at night and at least an hour away in Atlanta—then crawled home and let HGTV put me to sleep.

Finally after I went to the doctor who gave me a prescription. But it took another ten days, plus a change in prescription before I started feeling better. Meanwhile I had no choice but to take to my bed. What part burnout might have played is food for another post, but I had to let Ralph to fend for himself.

And he fended fine. He was very concerned. VERY concerned, in a way he never would have been when he was cognitively sound, sound. He worried aloud, What would I do without my Alice to take care of me.

Ever ten minutes he came into the bedroom to ask me if I was okay and if I needed anything. Usually I was trying to sleep actually and wished he would just leave me alone, but his heart was in the right place. He even brought me tea and toast. He ate sandwiches and the chicken soup I had (brilliantly if I say so myself) decided to make the day before I started feeling really bad. For several nights he slept in another room to avoid contagion, which was frankly also a nice respite because I wasn’t wakened during the night by his talking in his sleep.

And then the Saturday before Thanksgiving, as family began to drive up, I started to feel like myself. Hurray.

…We will skip over most of the details of the nine-day Thanksgiving we just completed this morning. Let’s just say that seven adults (all either related or married and all good at bickering), one teenager and a coughing, sneezing two-year-old trapped in a house twenty minutes from restaurants and shopping is not the best plan for holiday cheer….

Which brings us to today, or actually to the day before yesterday when Ralph started sneezing and coughing. Although so many people crowded into the house was difficult for him, Ralph loved being Bop to BabyBop and turned out to be something of a toddler whisperer, able to get BabyBop to eat when no one else could. The problem is that BabyBop is never without his germs and likes to share his food and drink with those he loves, like his Bop.

Or maybe I’m just trying to deflect responsibility since I am probably the one who got Ralph sick.

Because he is now the one in bed. And now I am the one going into the bedroom every hour or so to check if he is okay or needs anything, and he is the one saying LET ME SLEEP. A few minutes ago I told him that now I understood how he felt two weeks ago, and we laughed together at the role reversal.

Actually, he doesn’t have a fever the way I did, isn’t coughing as much as he was a day ago, and isn’t congested. But he is tired and feels as if he has a cold. This is the first time he’s had a physical problem in all the years since his cognitive impairment was diagnosed. And my reaction is different than it would have been pre-diagnosis. I realize he can’t take care of a relatively mild cold himself. I have to be around to make sure he drinks liquids and eats something and takes decongestants in a way. He is like a sick seven year old. Sweet and helpless.

And for the first time I have had to tell my daughter I can’t help her out of a babysitting jam because I can’t leave Ralph.

It’s not a big deal in a way, not leaving my husband alone when he has a cold, but it feels like a harbinger of things to come….

Oh no, I hear Ralph’s truck starting up. I would bet he is heading to the store for cigarettes (which he has not been smoking for obvious reasons). I better go catch him.

BOP AT THE BEACH

 

beach

 

When my daughter in New Orleans, who loves sun and surf, brought up the possibility of a family week at the beach, I wasn’t surprised, but then my son in New York, who hasn’t let the sun shine on him directly since he was 18, jumped on board. I was thrilled. We were going on one of those three-generation beach vacations I’ve always heard about never thought I’d actually get Ralph to do. But he did.

Ralph agreed the plans seemed doable: not too long a drive; an area of north Florida he knows well; a house big enough for all of us to have privacy; most important, a covered porch with a beach view.

Of course, as the date approached, he grew less and enthusiastic.

 

Ralph: I can’t leave the dogs.

Alice:  They’ll be fine. Pedro will feed them and walk them every day.

Ralph: I hate the beach.

Alice:You don’t have to go to the beach. You can sit on the porch.

Ralph: I won’t have anything to do.

Alice: You can do exactly what you do here, and you will even have someone to drink beer with (unfortunately)

Ralph: How long are we going again?

Alice: Four or five days(actually seven but who’s counting)

 

After multiple (in the hundreds at least) variations of this conversation, I started getting nervous. For one thing, I remembered our last car trip months with its multiple stops for Ralph’s nervous stomach, with cigarette fumes blowing in through the open passenger window despite my requests that he not smoke, with his constant complaining how much longer. For another, I was secretly worried about the dogs, or rather about whether Ralph could survive a week away from them.

 

In fact, the drive was blissfully uneventful; I’d loaded the car the night before to give Ralph maximum pre-drive sleep time in the morning; he needed only three stops in five hours, and he was willing, most of the time, to vape instead of smoke. Since we were the first to arrive, Ralph helped haul the supplies inside before settling on the porch with a real cigarette while I unpacked and organized supplies. Then I had about twenty minutes to sit down myself before the others showed up and the week began in earnest. Those were the last peaceful twenty minutes I had for the week.

For the next seven days there were seven of us eating together, beaching together, laughing and/or arguing together, playing with BabyRalph together. There was also lots of me cleaning up and cooking and organizing the troops, and also biting my tongue and going along for the ride. Let’s face it; family vacations are like childbirth and marriage—universally the same while observed from outside, but intensely individual while going through the experience.

The group high of the week: a hilarious game night of charades and identity games, in which even Ralph got more or less involved

The group low: not the semi-frequent rain but an expensive, mediocre restaurant dinner that took forever and left everyone grouchy with everyone else.

My private low: The stress of maintaining a balance between involving Ralph in the life of the family and letting Ralph relax his way, ie by sitting alone smoking endlessly on the porch and drinking as many beers as possible. Not once did he venture to the beach, not even to see his grandson’s first experience of the seashore. And controlling his intake of beer was more difficult under vacation conditions although I found it bittersweet, the way the adult kids (including son-in-law) took turns sitting with him evenings on the porch, reminiscing and philosophizing beer after beer.

My private highof the week and going forward forever: BOP. For a while now BabyRalph has been calling his mother Mama, his father Papa, his 14-year-old sister Dada (no clue why but he refuses to call her anything else), and me Nan (sounds more youthful than Gramma or Nanna, don’t you think?). By the first day at the beach his uncle had become Jaak. And then Ralph became BOP.

Where BabyRalph came up with BOP is anyone’s guess, but it is genius. BabyRalph would run around the house calling BOP BOP BOP. And BOP would be dragged from the bed where he was napping or the porch where he was smoking to sit for a few minutes in the big blue armchair by the window so BabyRalph could climb into his lap and chatter away for a few minutes before one or the other drifted away.

On the last day I was the one ready, despite the allure of beach and waves and family, to leave behind the cleaning and cooking and organizing (and family), while Ralph/BOP was in no hurry to leave at all. As for the dogs, he asked about them exactly once.

So, whether he knows it or not, more trips are in the works.