Tag Archives: Alzheimer’s spouse resentment

Evacuation and Alzheimer’s–The Perfect Storm

When the City of New Orleans announces a voluntary evacuation before Hurricane Ida, my daughter, son-in-law and I have to make a quick decision whether to stay or go. We decide to go. 

But it isn’t easy finding somewhere within a six-hour drive with room for seven people, including a 4-year-old, a 17-year-old and a10-month-old. More problematic are the two dogs, especially Ralph’s beloved, aged lab Zeus who has been visiting the vet every other day for a combination of laser treatments for his bed sore and acupuncture for nerve problems that make standing on his own impossible. Not a lot of choices pop up:  basically one place, in rural Alabama. It costs twice as much as everywhere else and is in the middle of nowhere but it takes dogs.  We book it.  Then I explain to Ralph we are going. Twenty minutes later I explain again. And again.

Saturday morning I explain again. Ralph has his usual leisurely coffee in bed while I start a load of last minute laundry before running out to pick up my granddaughter who will be riding with us and the dogs. We get back to find soapy water falling through the kitchen ceiling from the washing machine upstairs. Because old habits die hard and Ralph was always brilliant at all thinks mechanical, plumbing and electrical, I foolishly send him upstairs to turn off the machine and see if he can find a cause for the leak while I quickly mop up the floor. He comes down and says he turned off everything. I don’t double check. We somehow fit both dogs on stacked dog beds in our hatchback and take off.  

The four-hour drive takes eight (most of the delay getting out of New Orleans itself), but Ralph is actually enjoying himself because, per my granddaughter’s request, we listen to Bob Dylan the whole way. As we are about to make our last turn toward the rental cabin Ralph notices a sign to the next town 10 miles up the road. 

“Moundville. I worked there on a dig when I was 20.” He seems more animated than I’ve seen him in ages although he can’t remember many details. “The mounds were huge,” he brags to my granddaughter who at 17 is less than impressed. 

Sunday the news from Louisiana is not good, but texts from friends still in Nola remain upbeat. The weather where we are is fine and we are in bizarre evacuation elation mode so all of us, including the dogs, pile back into our cars to visit the archeological site now called Moundeville Museum.  We climb the many steps of the biggest mound, even Ralph. He is a little disappointed that the mounds aren’t as big as he remembers and that the park’s upkeep is not pristine, but he loves that the park is named after the professor he worked under. 

By that afternoon he has lost track of Moundeville since he is caught up dog care. We need to keep the dogs out of the small not particularly dog friendly house as much as possible. We keep them on the small porch as much as possible. I have walked Lola in New Orleans, but Ralph is not used to walking dogs, or to using poopscooper bags, or in having to walk himself period. I take care of the medications Zeus is on, both oral and topical, but lifting Zeus up into a standing position is a struggle that kills my already problematic back. I constantly needle Ralph to help despite knowing better.

Monday we learn about the power situation in New Orleans and realize it could be a week before we can go home, not the day or two we expected. My son-in-law’s uncle offers us his lake house in northern Alabama for as long as we need it. We pack up and drive further north. The cabin is lovely, with a lake view and the internet connection my daughter and son-in-law require to work, but it lies on a dirt road miles from the nearest store. We feel completely cut off from the world.

My sense of adventure is wearing thin. And Ralph’s coping abilities are faltering. Adapting to change was never easy for him and since Alzheimer’s it makes him miserable. He has lost all sense of humor as the rest of us try to keep our spirits up. He keeps forgetting why we are not home, keeps forgetting where home is. The two-hour drive with him to the lake house feels much longer as he asks the same set of questions over and over. Fortunately the lake house has a screened porch where he and the dogs settle in away from the rest of us—unfortunately the steps from the porch to outside are too steep for Zeus to manage.

My daughter and son-in-law have to work, remotely, fulltime. The teenager and I help care for the two little ones. But Tuesday I wake up with a seriously bad cold and by Wednesday have lost my voice and my back has gone out. I am only semi-functional. Ralph meanwhile sits on the porch with the dogs. 

I manage feedings and meds but nag him to walk the dogs. “Where’s a leash” becomes his common resentful refrain. What I am asking of him—walk a dog, pick up its poop and throw it in the trash—is unrealistic. Ralph is too slow, too confused, too frail. I find myself lumping him and his dogs together in resentful annoyance. Evacuation makes it harder than usual to live with a grown man who does nothing for himself.

Then because he catches my cold and I feel guilty. He sleeps nonstop for the next two days. When awake, for the meals we bring to him, Ralph seems more confused than usual. It reminds me of how much ground he lost two years ago when he was hospitalized for a blood infection. 

By the weekend, all seven of us are exhausted. There is still no power in New Orleans and no assurance from the outage grid map when it will come back. Togetherness is getting old. The kids are cranky and Ralph is crankier. But by (our second) Monday, when my daughter’s power has returned and she leaves with her husband and the boys for New Orleans, he has started feeling better and seems to have settled in. He has abandoned the porch to lie in bed reading or napping with the dogs on their beds beside his.  But if asked he helps walk the dogs and even poopscoops, though he forgets what to do with the green bags which I find left in odd spots.

The next morning, the grid shows our power is back too, hurray. We, meaning my granddaughter and me, pack up for the trip back home while Ralph mostly watches. As we load the dogs into the car’s hatchback (where they are remarkably happy travelers) Ralph can’t quite get a handle on why we aren’t home. 

“Is the vacation over?”

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….