Category Archives: daily life with MCI/Alzheimer’s

Silences

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I am not going to pretend that there were never silences in our marriage before Ralph was diagnosed with Mild Cognitive Impairment. Our arguments included the silence of resentment, the silence of fury. Ralph and I argued a lot since we were frequently on different wavelengths about everything from child rearing to national politics. But when those silences happened, I was passive-aggressive while Ralph used to be the one who eventually stormed and stomped beforehand.

…..Not to diverge but I just noticed that I write Ralph used to be the one who an awful lot     in my posts:                                                                                                                                                                                  Ralph used to be the one who complained about silences.                                                                     Ralph used to be the one who followed a regimen with medicine.                                                    Ralph used to be the one who was more outgoing.                                                                                                           Used to be the one who took care of our business affairs,                                                                                          Used to be the one who was into rules and regulations,                                                                                             The one who drove too fast.                                                                                                                                                The one who was charismatic,                                                                                                                       Who loved to analyze politics,                                                                                                                        Who was good with facts and figures,                                                                                                            Who was the family disciplinarian.                                                                                                                  Who could remember everyone’s name,                                                                                                     Who was intellectually and emotionally passionate.

Now Ralph has relinquished many of his roles, every one of those listed above. Meanwhile I am taking some but not all of them up in his place: yes, I’m the one running the business, setting the schedule if not the rules, remembering whatever needs remembering, but not picking up the slack on passion or charisma.

Sometimes, especially when I receive sympathetic comments, I wonder if I am giving people a lopsided view of Ralph here. Too much Ralph used to be.

Because the fact is, Ralph still functions on a daily basis pretty damn well. He can drive a car (even if he can’t remember directions), he can go to the hardware store and discuss why the tub leaks with our plumber, he can fix complicated machinery. He can carry on a perfectly reasonable conversation, even if he doesn’t remember it afterwards. If you met him, you would probably wonder what all my fuss is about.

Sometimes I wonder myself. After all, we have not really argued in months. Sometimes I am short-tempered and speak harshly, but he doesn’t remember long enough for my behavior to matter. And he almost never expresses anger himself. It takes very little to keep him pleased: whatever I cook for dinner is delicious these days, whatever I wear looks great, whatever he reads is interesting.

If anything, he is too easily pleased. Our lives have flattened. I am ashamed  how bored I get with Ralph’s conversations about the weather and the dog, yet how disinclined I am to share my own thoughts and feelings with him—I’m embarrassed to admit that I’ve stopped trying very hard. Writing these sentences forces me to acknowledge that while I know who Ralph used to be, I am not at all sure who Ralph is now or who we are together.

I have read enough about the later stages of Alzheimer’s to realize that down the road I may well look back on these early days of Ralph’s cognitive loss with nostalgia. But right now I’m nostalgic about our imperfect past, even those churning  silences we used to share as furious but passionate equals.

What’s Up with Namenda?

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Medicine is not my forte. Ralph was the one who always followed a strict regimen of vitamins and minerals. I can’t tell you how many bottles of women’s vitamins ended up half-used before I threw them out. I can’t even remember to take my calcium chews, even though they are chocolate flavored (well, a wan shadow of chocolate flavor). So I am not the best person to be in charge of someone else taking medicine. But I am now the filler of Ralph’s seven-day prescription reminder box.

Sixteen months ago, when Ralph was first diagnosed, our doctor prescribed donepezil, the generic name for the drug many newly diagnosed MCI or early Alzheimer’s patients take—the most common brand name is Aricep. No one claims donepezil cures Alzheimer’s, and the many studies on its efficacy seem inconclusive about whether it actually slows down the symptoms. But as soon as Ralph started on the drug, his symptoms stopped getting worse. And although this is not always the case for donepezil, he had no side effects.

About eight months ago, we added Namenda to Ralph’s routine. Namenda, which is the brand name for the generic memantine, complicated our schedule because it had to be taken twice a day. That second pill was hard to remember, for Ralph and me both. But again there were no side effects, and as much as he says he hates taking pills, Ralph felt the combination of Namenda, donepezil and escitalopram, brand name Lexipro—which his psychiatrist prescribed to help Ralph’s mood—was beneficial

About six months ago, a new once-a-day version of Namenda suddenly became available. Although our doctor said the drug company was manipulating the market because Namenda’s patent was running out, we were thrilled. One set of pills a day made life so much easier. I still was the one who filled the pill boxes, but Ralph became a champ at remembering to take his pills, and I got out of the habit of reminding him.

Until last week.

When I contacted our on-line pharmacy for refills, I was told there was a manufacturer’s supply problem. No renewal of once-a-day Namenda for at least a month or two, maybe longer. I called the local chain drug store; Ralph will not let me order his drugs from our independent pharmacy where the pharmacist knows him. No once-a-day Namenda was available there either but they had plenty of twice-a-day. I called the doctor’s office; the nurse said other patients had been calling with the same problem and she would check into the situation. Two days later she called back and said to go back to twice-a-day.

Bummer.

I ordered the pills, filled the boxes and told Ralph we were back to twice a day. That was Wednesday. Thursday he took all three A.M. pills but forgot the P.M.. Namenda and was asleep by the time I noticed. Yesterday, I had to leave the house early and he forgot his A.M. doses, but did take his P.M. Namenda. Today I handed him his A.M. pills with his morning coffee. And as soon as I post here, I am going downstairs to remind him, it’s time for the P.M. Namenda.

We’ll get the new/old routine down eventually but I would love to know what’s behind the sudden shortage and why we’re being held hostage by the pharmaceuticals.

Special Delivery

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Yesterday, I asked Ralph to stay around the house and watch for a UPS shipment while I took my mother to the doctor and then handled a business transaction concerning the sale of our business. Before I left the house Ralph asked me repeatedly why he needed to stay in the house. Once I was gone, he called me repeatedly asking what he was waiting for and worrying that it hadn’t come. At one point he left the house and waited in the barn, against my specific instructions, until I told him in the next phone call to go back to the house.

His problem was anxiety, not memory, or it was memory compounded by anxiety. But since the package was my daughter’s wedding dress (sent to us so the groom would not see it by mistake), my anxiety got pretty high too. Especially when Ralph stopped calling or picking up his phone when I called him for an hour while rushing home.

Of course once I got home, he was sitting on the porch with the dog and a beer. “Oh yeah, I think something came,” he said when I asked, “That big white box in there?”

Once the package came, it stopped being something he needed to remember so it didn’t occur to him to call and tell me. Besides, he’d left his phone somewhere in the house where he couldn’t hear it ring and needed me to find it.

The bottom line is that Ralph managed fine and the dress is safe. When my daughter nervously texted from her job to ask if it arrived, I couldn’t help teasing her—as if an already tense bride-to-be needed her mother to make things worse.

“If what arrived?” I texted back, before quickly, and guiltily,  texting again, “Safe and Sound.”

The joke’s on me because now I have to wait to open the box and look at the dress until she comes out here on her day off. The anticipation is driving me nuts…it’s a different kind of anxiety than I’m used to these days and one that’s a lot more fun.

My Confidence in His Competence–The MCI Conundrum

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I just got home from the feed store about twenty minutes ago. Last week, the woman who pasture-boards her horse with us told Ralph we were out of feed. Unfortunately she didn’t tell me until late yesterday afternoon. I have suggested that she contact me directly when she needs anything from now on. But I’m a little annoyed because she should have known not to trust Ralph with that kind of information—and I should have checked myself sooner

Yet, as I write I can hear the humming whir of Ralph’s John Deere, a strangely calming sound on a warm summer day in Georgia. You well may be wondering whether it is safe for Ralph to be on a huge tractor if he can’t remember simple conversations? The short answer is: at this point yes.

The long answer is that we are at a strange place in terms of Ralph and responsibility. And his work on the farm encapsulates the conundrum.

Ralph loves mowing and is still more capable than most people of any age at most physical chores—a good thing since we’re busy readying the farm for our daughter’s wedding here in early October. Ralph has mowed the fence lines and frontage and will need to mow them again, he has scraped our winding, unpaved driveway as well as the dirt floor of the barn where we’re holding the reception. He works about four hours every day, rarely starting before eleven after a long morning of coffee and time with the dog. When he stops in mid-afternoon, he’s dirty, hot and tired, but he’s also savoring the knowledge he is needed and useful, and—even more important to his sense of self—still competent at what he does.

To Ralph competence, has always been a primary virtue. He may no longer be able to function as a businessman, he may not be able to remember how to get to the dentist he’s gone to for twenty-five years, he may not be able to follow a movie plot, but he is competent out in our field on that tractor—a man in control of all his faculties (or at least the ones that matter to him these days).

On the other hand, I am always a little nervous. Not that he’s unable to do the work (well, a little that he’ll drive the mower into the pond) but that he’s forgotten what work needs doing. Sometimes when I tell him NOT to mow the front field, he gets so fixated on remembering there is something about that field that he ends up mowing it. He has mowed certain fields way more often than they need mowing. I have to remind him and push him but doing either too much can be counter-productive. It is less a memory issue than one of anxiety.

So everyday, instead of over-reminding I double-check his work.

I want Ralph to feel competent for as long as possible. In fact I will him to be competent. My worry is that I selfishly have him take on more responsibility than he should because I can’t ride the John Deere or fix the plumbing or cut the firewood. What if I miss the signals warning me of decreased capacity. What if something bad happens because I am not vigilant enough. But on the other hand, to deprive him of activities he can do and loves prematurely would be a huge mistake too. This is the teeter-totter we are riding together, weighing the rise and fall, hoping not to knock each other off.

Between MCI And Alzheimer’s–Treading In Place But For How Long

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Funny how one sentence can pack such a wallop. The other day I received a flattering comment from Alzheimer’s Wife who writes an elegant blog about caring for her husband with advancing Alzheimer’s. I am pleased that she like my post of course. But all I can focus on and what I keep re-reading is the second half of her sentence, “and this really brings home my life about four or five years ago.”

Will I be living Alzheimer Wife’s far from easy life in four or five years? The scary thought I mostly try to avoid bubbles up. I have read her excellent, low-keyed but insightful blog about dealing with her husband’s advancing Alzheimer’s without quite connecting it to my life with Ralph.

I don’t want to worry about what is coming. I prefer the strange complacency of MCI Purgatory where Ralph and I carry on perfectly reasonable conversations (that we sometimes repeat word for word three or four times in less than an hour), and where Ralph functions responsibly within the parameters of his (increasingly restricted) routine. Where the doctors’ warnings about what lies down the road for Ralph don’t quite resonate as long as Ralph’s tests scores hold steady, even if holding steady means treading water with the help of Namenda and Donepezil.

In MCI Purgatory I can choose not to notice small, undefined changes: how after a burst of intense reading a few months ago, Ralph now barely looks at the pile of books beside his bed; how he no longer bothers to follow the thread of most television dramas, how his favorite activity has become sitting on the porch watching squirrels with his dog—well, to be honest porch sitting has always been one of Ralph’s favorite activities, but he used to sit there listening to talk radio gathering fodder to argue politics with me. The radio is still on but he doesn’t much listen, and we never argue because he agrees so easily with whatever I feel like pontificating about.

But Alzheimer’s Wife has forced me to think about the years to come, to wonder if I should be using this time better—working with more discipline on my writing, volunteering more actively in the community, travelling. I keep making those plans but have yet to follow through.

Mostly Ralph and I live in a kind of calm bubble of daily routine, many of those hours spent nearby but apart. I write down any activities or appointments he needs to complete on an erasable board. Then, while I take care of the loose ends of our business and avoid working on my third novel, he mows grass, does the chores we’ve set together, or sits on the porch.

The one ritual that defines us as a couple, that we still share almost exactly as we did thirty years ago or maybe with improvements, is morning coffee. When we first married, I didn’t drink coffee but made Ralph’s every morning because his first wife did (or he said she did). Eventually I started drinking it myself. Then once the kids were out of the house, Ralph and I started taking turns making it and bringing each other our first cup, then often our second. Morning coffee, Ralph is sharpest and most relaxed. We watch the birds through our uncurtained window, listen to NPR rest stories, talk. This when we discuss any issue I want Ralph to understand and remember, doctor’s appointments, financial decisions, anything about our kids, lately the preparations for my daughter’s upcoming wedding.

In four or five years will we still be able to share coffee? Alzheimer’s Wife can’t answer that question. No one can. But Ralph and I giving up morning coffee together is the Rubicon I dread crossing.

Sometimes a Little Rant Helps

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Okay so I got a little furious at Ralph last night. That’s an oxymoron, isn’t it? Furious implies more than a little anger. But dealing with Ralph since his MCI means that any given moment I cannot allow myself more than a little anger, a little resentment, a little impatience.

Be warned what follows is my little rant. Even as the words show up on my screen, I see how “little” the incidents were that set me off. But if you are dealing with a loved one with cognitive impairment (or anyone who has ever been married), you know the way those little moments build.

Ralph and I drove into Atlanta yesterday so Ralph could try on a new suit for our daughter’s wedding. He said he didn’t want to go (“too complicated” as usual), but once we were at the store with our daughter, he started enjoying himself. He basked in our compliments about how good he looked, he told the salesman stories about his wild youth. Back at my daughter’s house, she and I got on the computer to order wedding knickknacks while Ralph relaxed with a glass of wine (and a smoke on the porch).

Since the three of us were laughing away, having more fun together than we have in ages, my daughter and I assumed that when her fiancé got home, we would all share an early dinner at one of their neighborhood restaurants. I had mentioned the plans in a vague way to Ralph, the way I have learned to mention most plans ahead of time, and he had seemed amendable.

But when my daughter made the understandable mistake of asking Ralph directly whether he was willing to hang out another half an hour, he said, “No, I want to get home to my dog.”

My heart sank. I knew that if we’d waited to mention dinner until the arrival of my daughter’s fiancé, whom Ralph is crazy about, Ralph would have gone along with the idea and then had a great time. But it was too late now. When I gently suggested that dinner out might be a nice change of pace, he became adamant about going home. I didn’t push. So at the height of Atlanta rush hour, we got in the car.

Slipping into the driver’s seat I asked, only half joking and barely pleasantly, if we were ever going to eat out in Atlanta again. He answered with the rhetorical question, why would we want to. Well that’s easy, I thought but did not say out loud, because we have always loved going to restaurants together, because I am as obsessed with food as I was when he me, because I am sick of cooking every night, then sitting in front of Jeopardy while we eat. I bit my tongue and said only that it might be a nice change of pace.

For the next few minutes we drove in seemingly pleasant silence—Ralph oblivious to my private stewing over being cheated out of a good meal—but then I suggested we take a different route to the interstate, one I know but Ralph doesn’t remember, so we would avoid the heavy traffic that comes after five.

A big mistake. Since I was driving I should have kept my mouth shut and just gone the way I wanted. Ralph again became adamant. He said my way was further than his way, that I was wrong about the time it would take. His voice rose with his anxiety. Before his diagnosis, I would have argued back, and screaming would have ensued. Instead I followed his route knowing it would be a disaster.

The tension barometer in our car rose not helped by my audible sigh with each minutes that clicked by. After sitting in the same line of unmoving cars for thirty minutes, Ralph turned to me and full of contrition said, “I forgot how back traffic gets. Next time you should just override me because you know better.”

Guilt immediately washed over me. How could I be mad at a guy who so willingly apologized and acknowledged his limitations?

Well, I could. I might be guilty about it but I was still mad. Mad because I was craving a nice meal out. Mad because planning the wedding has been a difficult but special time for all of us and I wanted this chance to share a sense of celebration with the two lovebirds. Mad because we were now stuck in traffic when we could be halfway home if I’d taken that left turn I’d wanted (and we’d be halfway through dinner by now if gone out with the kids). I was mad because I gave in unnecessarily. Oh wait, was I mad at him or myself?

I began writing this post with threads of resentment still clinging to my psyche. Petty bickering and small issues that blow out of proportion are part of most marriages; they were certainly part of ours before Ralph’s diagnosis. But they feel different now, complicated by moments of condescending pity knotted with bursts of affection and flashes of appreciation for the man Ralph remains. Complicated most of all by my own ambivalence at becoming what I always thought I wanted: the one in power, the one in control.

Memory Loss and Money Matters

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Yesterday I met with our new financial planner—Ralph would never have accepted the idea of a financial planner before now— and I was so anxious about the meeting that I left my laptop at the coffee shop where I’d just had lunch. Fortunately the coffee shop found my computer, and our retirement account is earning exactly the return the planner promised.

Money is not a subject I find comfortable to discuss. I have always been the artsy/intuitive, some in my family might say ditsy spouse. Even after I started working part-time in Ralph’s business office, using QuickBooks to make deposits, pay the bills and balance the books, I maintained the persona of Earth Mother not Business Woman. My domain was feelings; Ralph’s was the bottom line and money matters. (One important exception: using the example of my mother who used her coverage for her health aides, I successfully pressed Ralph to purchase long-term care insurance four years ago. Thank God.)
Since Ralph’s diagnosis, I have been thrust into the weird position of trying to think the way Ralph used to think about business and money. Well, that is not quite accurate because as I sort out our finances, I sometimes find myself disagreeing with the decisions he made.

Especially those he made in the last few years as his memory began to slip from his grasp. He had slacked off, clinging to outdated business habits and letting his assistant make more and more decisions. When she moved away and I became more actively involved at Ralph’s office, I saw the reality: while I worked ten hours a day, he came in at 11am and left at 3pm with an hour for lunch; he sat in his office reading magazines while I handled all the day-to-day matters. And yes, I was resentful to put it mildly. Still we continued to pretend he was in charge. He didn’t want to believe otherwise and frankly neither did I.

Then came the diagnosis of MCI/Early Alzheimer’s and suddenly there was no pretending we could go on as we had. We agreed that our longtime accountant and lawyer needed to know about Ralph’s condition early on. We quickly updated our wills and made sure that powers of attorney, including responsibility for health decisions, were in place.

As for Ralph’s business, the retirement that we had talked about, yet avoided for so long was now mandatory. Since Ralph’s business for the last 35 years had been managing rental properties he owned, selling the business meant selling individual properties one at a time, no simple matter.

As we began the process of talking to real estate agents and taking offers, it quickly became clear that Ralph couldn’t keep straight which real estate agent was which, which property was under contract, how much we should be asking, or how much was being offered. To tell the agents or buyers our situation would place us at a disadvantage, so I have found myself covering for him and acting as a kind of pseudo-go-between.

What has evolved is a kind of charade. The agents may not know officially about Ralph’s condition, but they have to sense something is odd. Ralph chats with them jovially, but I’m the one who responds to the offers. Ralph and I discuss the sales as if he is equally involved in the decision-making, but actually he cannot remember the details long enough to analyze them, so I make decisions with the help of our accountant and lawyer.

I have learned to be a tough bargainer, which I hate. I have learned to say no, which is incredibly difficult. I have learned to play on others’ sympathy, which has not been so difficult. Aging feminist that I am, I kind of like playing the helpless female.
And I have learned to manage our money, sometimes in ways that Ralph would not have accepted. While I have involved our son, another artsy type but with Ralph’s hardheaded business sense, in some meetings, ultimately I have made the tough decisions on my own. I had three closings in the space of six weeks. A fourth property is under contract now. I turned over some of our property to another management company that rented our office in the city. I now have an office at home.

Every day or so, sometimes three or four times within an hour, Ralph asks how much money we have in the bank. I tell him. Then he asks if we’ve paid off our mortgage. I tell him yes. Then he asks if we have enough to live on. I tell him yes again. Ralph, who used to walk and talk calculations down to the smallest fraction, doesn’t want to know details. He’s always satisfied with my answers. He trusts me completely.

Before MCI, I used to chafe at his controlling nature and complained that he didn’t trust my judgment. But the truth is, I was glad to shirk financial responsibility off on him. Now I have it, and it is lonely and scary, like so much of what being Ralph’s wife has become.

Drinking and Smoking and MCI

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II

I know, I know, if drinking and smoking are not good for anyone, their effect on people with memory loss has to be worse.

In fact one of the first things Ralph’s primary physician said after the diagnosis—no alcohol, no smoking.

But bad habits are hard to give up. And making someone else give them up is even harder. And to be honest, I’ve begun to wonder if maybe Ralph shouldn’t hang on to a few bad habits for a sense of normalcy. There are so many aspects of Ralph-ness he’s already letting go—the real estate dealmaker has lost his touch for number-crunching, the Bob Dylan fanatic doesn’t listen to music any more, the husband who used to only half-jokingly call himself the captain of the family passively agrees with every decision I make. Not that I’m complaining because Ralph’s temper has disappeared or because he’s become a sweeter, gentler human being; but the changes have spooked me a little.

God knows that for most of the length of our 35-year marriage I nagged Ralph repeatedly to cut down on both booze and nicotine. I have always been a bit of a stick-in-the-mud prude. I never smoked even as a kid and my drinking is limited to a very occasional glass of wine; after two I’m tipsy or worse. But I understand addictive habits; if there’s chocolate or ice cream in the house watch out.

Ralph has downed at least three or four cans a night for as long as I’ve known him. Well, actually, he probably drank closer to a six-pack many days. In fact when Ralph first started showing signs of cognitive loss, months before the MCI diagnosis, I thought his problems had to do with his Natty-Lite consumption (and I still believe it didn’t help). We talked about the connection—that he was always fuzzier at night, the same time of day he imbibed—and Ralph has actually cut down on his own. Now he drinks one or two, never more than three cans of lite beer around dinnertime, and not every night. Drinking less has obviously not cured his memory issues, and do I really want to take that bit of pleasure away?

As for smoking, Ralph went cold turkey when the kids were small and stayed nicotine free for over twenty years, but it only took one puff on a cigar at a Fourth of July party to get him hooked again five years ago. In retrospect he started smoking again around the same time that his memory began to slip, before we acknowledged it except as a joke although he may have been more worried privately than he let on.

At first he smoked just a cigar or two a day. He kept saying he was about to quit. Instead, he smoked more. He never smoked in the house; instead he’d find excuses to go off in his car or sit bundled up on the front porch on the coldest winter day lighting one cigar after another. All my nagging fell on deaf ears. The more anxious he became about his memory, the more he smoked. By the time he was diagnosed with MCI last spring, he was up to a pack a day. And remember, we’re talking a pack of cigars, cheap, skinny, smelly ones that have to be stronger than the equivalent number of cigarettes.

So last month, in an ironic turn of events, I found myself convincing him to switch back to cigarettes for two reasons: 1., he’d have to smoke a lot more of them to hit the same nicotine level he was reaching with the cigars and 2., my more selfish reason, the cigarettes wouldn’t stink up his clothes as much. The old Ralph would have fought me, but the new Ralph made the switch.

Now I remember how much I hate cigarettes smoke.

But two days ago I came across a 2012 Georgetown University study showing that nicotine may actually slow down MCI. I couldn’t quite believe, so I talked to the nurse practitioner in our neurologist’s office. She said the results aren’t in on Alzheimer’s-related dementia there is some evidence that nicotine helps with Parkinson’s.

Meanwhile, Ralph’s down to less than half a pack a day. So now I’m feeling guilty not only because he still drinks but also because he might quit smoking because of me. But I can’t bring myself to show him the Georgetown article.