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.
I have not written for several weeks. I have thought about posting of course. There have been plenty of incidents with Ralph to describe, trips to doctors, visits from friends, tractor crises*, funny conversations (i.e.: me: ”Sitting on the porch to smoke in the morning in your boxer shorts might not be a great idea.” Ralph: “If a car turns up the driveway I’ll see it and go in the house.” “But they’ll see you too.” “So what?” Indeed, so what?). . I would lie in bed in the morning thinking about a situation that I wanted to share, but when I sat down to write I would get distracted. Or with increasing frequency, I wouldn’t make it to my computer I wouldn’t make it to my computer at all.
Then I got a bad cold/flu complete with laryngitis. Of course that didn’t affect words (not) coming from my typing fingers only from my mouth, but it feels pretty apropos. Both a symptom and a metaphor for my condition and Ralph’s.
In Ralph’s case he has a version of mental laryngitis. There is no way he can get beyond the blockage. He cannot get from here to there mentally. So although I have told him 15 or 20 times in the space of a morning that x=x, he keeps repeating that x=y. Each time he says x=y, I correct him. Each time he says, Right, I forgot. And each time I become a little bit more impatient.
(Needless to say, this morning we have been having a x=x/x=y issue concerning our lack of heat in the house. Ralph keeps asking what made our heater go out and I keep reminding him that I actually turned it off on purpose. In fact, he is not wrong—the system is broken—but the complexity of the situation, that the system has sent our electric usage meter soaring and I turned it off until a technician can find the problem, overloads his memory systems. As I was writing this tech guy came and Ralph started to tell him that the heat was broken; I re-explained and have sent him to his office.)
But my impatience dissipates when I visualize Ralph with laryngitis, especially if I do so while I have it myself. I can feel what it is like to have something caught in whatever the passage leads from memory to thought, not unlike the words caught in the passage between my brain and my mouth (or my typing finger, let’s be honest) Laryngitis is isolating, but in an oddly dreamy way also escapist because it is so straightforward; you cannot make yourself speak without having a voice. So I watch Ralph sitting beside me yet slightly removed with new understanding. He has realized that certain passages are blocked and he can’t unblock them.
As for me and my laryngitis, I am hoarse but talking again. But I have also realized that I have some blockage too. I have found some memories of my life with Ralph now and in the past so difficult that I have silenced them and in doing so have silenced myself. The difference between Ralph and me is that I can, I hope and with some effort, chip away at my blockages, while Ralph may not have that option.
Ralph started the Ritalin study through Emory last week and I’m waiting to see some spurt of energy. He still lies down to “rest my eyes” at 5:30, resting them so deeply that I have to work to rouse him at 6:30 to eat dinner, after which he has his cigarette and goes back to sleep between 7:30 and 8. So my guess is that he’s been given the placebo.
Which is actually okay with me. As I acknowledged when our practitioner first said Ralph might qualify for this study, I have mixed feelings. (The future good that participation may do for others is a given but not really part of my equation.) I do not want to deprive Ralph of the chance for a more normal life or any chance to enjoy life more, and it is possible according to the nurses and social workers that Ritalin really will create a new zest for life.
But what if he ends up with more energy and zest than I have? That would be a cruel irony, wouldn’t it? Because my energy is certainly depleted. I am not sure how much I can get away blaming my mental and physical exhaustion on caregiving. Laziness and fear of challenge play their parts in drying up, or avoiding, my creative ambitions. But 15 years–10 as daughter/caretaker segueing, with a year or so of overlap, into five as spouse/caretaker–is a long time in what has never been a natural role for me.
No matter, my competitive nature has turned this worry into a positive goad. To avoid being left in the dust, I am now revving up my energy with a new diet, more regular exercise, and visits to my therapist, whom I stopped seeing shortly before Ralph’s diagnosis when our relationship and my own sense of self finally seemed healthy.
Which brings me to my second worry, what if Ralph on Ritalin reverts back to the Ralph my therapist has reminded me he used to be: autocratic, critical, competitive, jealous. He wasn’t that bad, I laughed, but then bad memories began to surface. I could go on and on with a list of the examples of his faults and bad behavior I’ve begun to remember, and I would except just now I was interrupted by a phone call that’s thrown me completely off course….
The caller, JG, was starting out as a real estate agent when he met Ralph, then in his entrepreneurial prime. The two hit it off. , Over the years, I would hear Ralph talking to JG on the phone, explaining how to analyze values and bottom lines, offering professional advice but also yaking about fishing, another passion they shared. JG was younger and we never socialized much. But he did bring his wife and kids out to the farm for several visits shortly before they moved to north Florida. His wife turned out to be lovely—we had immediate rapport. His son, who was six or seven on that first visit, was obsessed with tractors, so he was in heaven when Ralph took him on the riding mower. (I don’t remember if they played on the tractor too.). The next visit, the boy was old enough to ride the mower himself, with a lot of supervision.
JG still comes to Atlanta regularly for business. Since we closed our business and turned the one rental property we still own over to his management company, JG has known, in vague terms, that Ralph was having some kind of problem and no longer actively involved in decision making, but he has never asked for details and I didn’t offer. He hasn’t seen or talked to Ralph for ages. The last time I talked to JG was a few years ago about a business issue. We were friendly but careful with each other.
He called today over another small business matter,. When he asked how Ralph was, I told him Ralph’s memory was holding stable.
“What’s wrong exactly. I never asked but is it Alzheimer’s.”
“On the continuum but still early stages,” I explained. “You might not even notice any change at first.”
“So he still fishes?” “No.”
“Oh, he can’t fish?” “No, he has no interest.”
JG’s shocked silence was deafening. Here was someone who only knows Ralph as a man avid about the activities he loves. I took back what I’d said about JG noticing—he would definitely register the changes I’ve begun to take for granted.
JG began asking the questions he’d never asked. WeI had a long, serious discussion.
“I didn’t want to invade your privacy.” That made sense because I’d been vague about Ralph’s situation early on, not sure how much to share. (These days I share everything ad nauseum.)
“It is hard to imagine Ralph unengaged. He was so interested and involved. He was …” I could tell how upset, really upset, he was. “He was like an uncle… …”
I invited him visit, with his son who is now a 6’3” teenager but still loves to farm work. JG said he’s been waiting for the invitation and will make sure to come soon.
I hung up in a different state of mind from the one that set me writing this morning. I am feeling tender toward Ralph now, of course. And toward myself, realizing how tenuous my emotional memory of Ralph and who we were together, the good and the bad, has become.
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.
At our recent annual check up, NP Stephanie suggested Ralph might qualify for a study on the use of Ritalin to treat apathy.
Apathy is clearly an issue for Ralph as it is for so many others dealing with Alzheimer’s. Or at least “apathy” is the quick way I, and evidently plenty of others, have described the increasing indifference and lethargy that occurs in those on the Alzheimer’s spectrum.
So barring a cure, finding a treatment for Alzheimer’s apathy is obviously a good idea. Sitting in Stephanie’s office, I agreed immediately that we should see if Ralph qualifies for the study. Stephanie called the clinical research nurse in charge hoping we could meet right away, but after an unsuccessful game of phone tag, she left the nurse a message with my contact info and we came home. A few days later I missed a call from the nurse. I called back. Soon we began our own game of phone tag that lasted two weeks. Then two or maybe three days ago, the nurse and I finally talked. She described a 6-month blind study requiring one daily pill that may or may not be Ritalin and a monthly visit to Emory. Not exactly demanding. While we were on the phone she went ahead and emailed me forms. I was to read them and get back to her with dates we could meet in the next two weeks.
Of course, I’ll get back to you right away, I told her as we hung up.
Except as hours and then days passed, I put off opening her e-mail.
But every time I glanced at the little red number 1 signifying an unopened e-mail on both phone and computer, I couldn’t help thinking, Do I really want to be bothered? Is the minor possibility of improvement worth the effort?
But those questions were only a cover as I toyed with darker thoughts. Will Ralph be more trouble if he is less passive? Is it easier for me just to let him float further out to sea?
Then this morning, I got around to opening another email, this one from the Healthy Aging Study in which I participate. There were two short surveys, one on “resilience” and the other on “purpose”. Resilience was a piece of cake; I could tell my coping answers were fine. But as for purpose, ugh, I hated those questions I couldn’t avoid answering honestly—like “Disagree Highly” with having goals I look forward to accomplishing.
I have had to face that I have the apathy problem. Or rather we both do. But I’m the one making decisions for Ralph.
So with admitted reluctance, I emailed the research nurse back …actually the emails have been flying as I write this, multi-tasking semi-whiz that I am …and his appointment for initial testing to see if he even qualifies is scheduled for next Wednesday. I have added it to my calendar and his.
And now I actually feel much better, having passed, if barely, my test as good caregiver.
(And yes, if my overall mood does not lift, I promise I will deal with it.)
Ralph has resigned his will.
Interesting how typos work. I sat down to write about taking Ralph to our lawyer to re-sign his will but evidently I have something else on my mind as well.
And really the two are not unrelated. Our lawyer re-drew my will months ago. because I realized while driving down the highway and witnessing a car crash that I needed to consider the possibility that something bad could happen to me. Death of course. But also, what if I suffer a debilitating injury in a car crash or have a stroke, or what if my irrational fear that Alzheimer’s is contagious comes true and I disintegrate faster than Ralph? We had a standard husband-and-wife arrangement that left Ralph in charge of our finances.
Obviously I should have dealt with this possibility sooner (a word to the wise) but luckily I’m still around so I had our attorney change things up, creating a trust for Ralph and giving financial power of attorney to one kid, medical power of attorney to the other—Ralph won’t have to handle anything. I signed my new will and caught some other minor changes that were needed, but it didn’t occur to me until recently, that those same changes were needed in Ralph’s will. So the lawyer re-drew his will too and off we went to sign it.
The thing is I kept waiting, with some dread, for Ralph to ask questions about the revision, but he had no particular interest in knowing the will’s content. His concern was that we had to drive into the city and “waste the day.” Really I think his concern was that he wouldn’t be allowed to smoke in my car, a valid concern since he was correct. But he acquiesced pretty easily.
Because in fact he has already resigned his will. And signed it over to me. For years now I have watched a man who used to say with regularity and only half kidding, “It’s my way or the highway” devolve, giving up decision-making in first small and then larger increments: From “I’ve decided” (most of our married life) to “What is your opinion?” (starting about a dozen years ago in our second honeymoon stage to make up for the fact that we fought all through our first honeymoon) to “Oh, you decide but be sure you….” “Oh, you handle it, but have you considered….” and “What did you decide and are you sure you made the right choice” (in the last years preceding and in the first years after his diagnosis) to “You decide…” and “You handle…” His main conversation starter these days is actually “Explain to me again what you decided about…..” (multiple times in a row whenever a question gets onto his mental loop), but mostly he doesn’t start conversations about anything involving decisions, big or little. And he never suggests. As for reactions to my suggestions, that’s a bit more complicated. He goes along with pretty much whatever I tell him, no small responsibility. He retains a bit of stubbornness when it comes to leaving his comfort of the farm (“I don’t want to go out to dinner” “Do we have to go to the beach with the family” “Oh not the doctor again”) but for better or worse he’s even becoming more malleable about being ordered off the front porch. I am not sure if that’s a relief or a worry.