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.”
“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.
Alice in Memoryland 
I have just been reading about this protocol. To any extent that it can be done, the healthful side effects seem like they would be worth the effort.
We have good times and some not so good. Occasionally DH “comes to” and reacts normally. Still continuing is his inability to communicate in words along with most modes of outward expression. I hate the times he seems unhappy or agitated and it feels like he is blaming me.
I give him numerous supplements and notice a HUGE difference in him. I don’t dare skip one of these in particular… it is that beneficial. We are on nearly the same level for about two years now and I think back wondering if he had these problems when he worked. It is hard to know.
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I think the trick is to follow as much as you can comfortably. At times I am more willing to go all out, at other times the thought of struggling to get Ralph to follow more rules is too daunting. His diet is certainly healthy and he has reluctantly added more exercise into his life….He is also on some supplements but they do not seem to affect him any more than the Ritalin placebo.
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The supplements I am giving DH are Andrew Lessman’s — Memory and Brain/acetyl-n-carnitine/n-acetyl cysteine. Since discovering that I have a fatty liver, my GI said to add in more fiber. So we are eating more fresh (mostly veggies). The supplements I mentioned make a huge difference, just HUGE.
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Thanks for this information. I’ll check it out with our medical team.
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What are the supplements that you are giving him?
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I just wanted to share with you and your readers my husbands use of Ritalin and also the Bredesan Protocal- I read a post you wrote about it. My husband was placed on Ritalin by his psychiatrist due to its “effective use for apathy for Alzheimers” according to the psych and since he has taken it in the past for his ADD, it was considered low risk. He definitely feels more focused on it and I do see an improvement in his motivation. Motivation was not something he lacked when just dealing with ADD but was something I had seen with the MCI. As a result, he appears less easily agitated and finds more meaning in his activities. It can be done in single dose or time release. He has tried both.
We follow the Bredesan Protocol as best as we can afford. I can understand why others my find it too taxing but since I place a high priority on nutrition, health and sleep, it was consistent with our goals anyway. I would really encourage anyone with MCI to ensure a sleep disorder is not complicating the issue. My husband has three types and when his are worse, we definitely see an exacerbation in his symptoms. Since I cannot create a double blind control group of my husband using and not using the Bredesan Protocol to determine its effectiveness, I can never be sure but I feel his implementation has helped keep him from deteriorating. He was slowly but progressively declining prior to its implementation. This is just our experience.
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Thanks so much for your input Jill. We actually pay our first return visit to the Ritalin study clinician since Ralph began the Ritalin. So far any effects have been very small as far as I can see. As for the Bredesan Protocol, I admit I had to look it up. Ralph pretty much follows the diet–lots of fresh vegetables, minimal fat, not much sugar (well, if you don’t count his nightly small nutty buddy), but there is no way he is going to stop smoking or drinking his lite beer entirely at this moment in his life. Your advice about sleep is also wise (not a problem Ralph has. In fact, he is remarkably healthy if you don’t count his cognitive impairment. Healthy cholesterol, low blood pressure, athlete’s heart rate, good weight.)
Each case of cognitive impairment is so different, but I believe whatever seems to work for a given individual is valid and important to share because one never knows what suggestion will be the right fit.
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Wondering if DH has a sleep issue too.
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Somehow I replied to the wrong comment above (think I had already replied but I am technically a ditz so who knows). No sleep issue here. He sleeps long and deeply….
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Very interesting information. Ralph does not have a sleep disorder. So far the drug that may or may not be Ritalin is not having any affect on him. If it is a placebo, he will be able to switch to Ritalin after about five more months. I have read about the Bredesan Protocol and am sure it works well, but to get Ralph to follow it is frankly more than I can take on right now.
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Can certainly appreciate the mixed feelings you must have. That’s been a lot of caretaking, too. Hope all continues to go well for you as it can.
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Thanks for responding.
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When will you know – or will you ever be told – if he’s on the placebo or the Ritalin? How long does the study last?
I hope JG comes to visit. Wonder if Ralph will be pleased to see him – will he remember him? I remember being asked by a total stranger if Dad was ‘in the early stages’ and not quite knowing how to answer the question.
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I’m not sure we will be told officially but after six months when he ends the study, he can take, or continue to take, Ritalin. Yes, what “early stages” means varies greatly from case to case, doesn’t it. For all my complaining, I hope we stay early late.
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