Tag Archives: Alzheimer’s spouse stress

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.

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.