Tag Archives: Alzheimer’s spouse guilt

TAKING THINGS IN HAND

decision.jpg

 

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.

Ralph’s Annual Alzheimer’s Test, 2018

drive thru

 

No surprise, Ralph’s subscription to Alzheimer’s has been renewed. I know the analogy is illogical but that’s how I sometimes think of his annual mental check up.

Does that seem blasé?

It’s just that every July the routine is so similar. We get to the building after a long anxious car ride, Ralph takes the standard hour long test while I meet with our Nurse Practitioner Stephanie privately, I tell her (every time) that I sense Ralph growing less engaged, Ralph joins us after his test and Stephanie checks the results before telling us that he has pretty much held steady. Some element of the test usually shows what she calls “a little slippage” from the previous year but never as much slippage as I expected or think I’ve noticed.

For instance, this year his tests results showed that compared to last year, he forgot three more words on the word retention section or two connection on the connect-number-and letters section (a test I found difficult myself when I took it as a part of Emory’s healthy aging study). Stephanie seemed less concerned about those scores than she was that he had answered two more answers denoting possible depression than he had last year. So we have upped his lexapro back to what it was a few years ago when in retrospect he seemed almost jolly.

I think Stephanie is wonderful, perceptive and caring. I think so particularly after she specifically asked if I still travelled to see my grandson; I said yes with a bit of embarrassed hesitancy, remembering a call from a friend who with best of intentions told me Ralph seemed lonely.

“Well you definitely should,” Stephanie began and in that half second before the next word I groaned to myself that she’d found me out as a caregiver will to abandon her caregivee), “continue those trips.”

So I love and believe totally in Stephanie.

But after four or is it five years, I’ve finally acknowledged to myself that the annual test is limited in its efficacy. My personal test results for Ralph were a little different this year. What I noted were two concrete-ish differences from a year ago and maybe a third.

  1. On our to Emory Ralph told me he was beginning to feel foggy more often. “Foggy” is a term he used a lot before he went on his medications way back when he was first diagnosed but has not used much since. I was a little, if not exactly alarmed, concerned. (Of course, when I brought up what he’d said in front of Stephanie, he didn’t remember saying any such thing and denied any new fogginess.)
  2. Two or three years ago, Ralph happily agreed when I suggested we pick up Cuban sandwich at a funky joint nearby that we used to frequent when we lived in the city. The next year he became less enthusiastic about the inconvenience of going out of our way to a restaurant. Instead we fell into the habit of dropping by the on-site café every time we came to Emory, which was quite frequent while Ralph was in his now defunct Merck study. But after this visit when I suggested the café, he demurred, not exactly adamant but firm. He wanted to swing through a drive-through, lately pretty much the only place he’ll reluctantly eat away from home. The Emory café is nothing special but the food is relatively healthy and I have always looked forward to that little break in our routine, a little moment of civilized social normalcy. That his unwillingness to eat in a café was upset me may say more about me than Ralph. Food has always been kind of passion. I feel the loss of eating out sharply. It was one of the few activity we always shared as a couple, both of us adventurous and willing to try pretty much anything, both of us fascinated by the culture of food, both of us drawn to both high and low cuisine. I briefly thought of insisting we go to the café, and maybe I should have. Instead I acquiesced and swung us into a Burger King. But I was resentful. After ordering Ralph his sandwich and soda, I passive-aggressively ordered only a diet soda for myself, while reminding Ralph, “I’m on a diet and there is nothing on the menu I could eat.” (Oh, please, I was starving by then dying for a greasy burger.)
  3. Bonus difference point, He didn’t notice I was upset. Me being passive-aggressive and resentful is nothing new in our relationship. It may have been the bedrock of our relationship: whenever I got passive-aggressively resentful, Ralph more than noticed and would turn surly and aggressive back. So I honestly don’t know if change number three is for the better or worse….