Tag Archives: anger and joy in Alzheimer’s

Wedding Preparations Don’t Stop For MCI

daily life with MCI/Alzheimer's, , , , , ,

Long before she received her engagement ring, our daughter made it clear she wanted to have her wedding  on our farm, where she and her brother grew up doing chores, riding horses and complaining that we lived in the middle of nowhere. Watching the recent cognitive changes in her father only made her more determined.

“Something simple, a simple farm wedding.”

In barely two weeks 120 guests will trek a wooded, far-from-manicured path out to a clearing within a pecan grove where they will sit on hay bales  to witness  Hilary’s wedding. Her older brother will play the bagpipes AND the sitar during the ceremony. A close friend will officiate. The groom’s ten-year-old daughter will be maid of honor. Everyone will then stroll back to the banks of our fishing pond to celebrate with  dinner, drink and a live bluegrass band under the stars (with a covered hay barn nearby just in case). We’ll eat wedding cake baked by my daughter’s best friend’s mother along with the 130 individual jelly jars of tiramisu she and I made together on Sunday.

It all sounds and hopefully will turn out to be delightful, but that “simple farm wedding” has ballooned into quite a production. While my daughter and her intended have done most of the decision-making and a lot of the organizing, the party is in our backyard—not to mention that a lot of guests will be camping out afterward and I’ll be feeding them the next day—so getting the farm ready has been Ralph and my responsibility.

Responsibility is not something Ralph likes to take on these days. His Mild Cognitive Impairment means that he can’t remember making or receiving phone calls, let alone the content of the calls. He gets anxious about dates and times. He needs 12 hours of sleep at night plus a nap in the afternoon. Nevertheless, as the wedding approaches he has stepped up and taken on extra responsibilities, just as he did this past winter while I was recovering slowly from a broken ankle.

In the last couple of months he has mowed our big pastures on his tractor, used the smaller mower at the reception and wedding sites, made the small repairs I’ve requested around the house because I am mechanically inept, and done various other chores. Given his limited mental and physical energy, he usually starts around 11am and quits by 2pm to sit on the porch until his nap before dinner. The farm, which was looking more than a little downtrodden, has spruced up in slow but steady increments. Next week he will use the tractor to smooth our ¼ mile unpaved driveway. As long as I remind him with his daily list.

I have to be careful though. Too much instruction or pressure definitely backfires. His memory blocks up. I am learning to control my natural impatience over how slowly long-term goals get accomplished and to bite my tongue when Ralph mows where he’s not supposed to instead of where I asked. Eventually he seems to follow through on every request more or less.

So although I lie awake every night worrying about where people will park, this wedding has been a boon. For a man whose attention span for reading and even television has dried up, Ralph has been remarkably focused. And he’s so good-natured about it. (Pre-cognitive impairment, he would have been super competent but grouchy.) He’s even relented and agreed to a new suit.

But there is a downside. As the day approaches, his anxiety rises. “This is going to be a disaster isn’t it?” he asks everyday, and since cognitive impairment has not impaired his fatherly ambivalence, he always adds, “Jason’s a great guy, but I don’t want my baby girl getting married at all.”

Silences

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , ,

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.

My Mother’s Not Cognitively Impaired, Just Old

Caregiver/Spouse Issues, , , , , , , ,

I spent yesterday in a rush of care-taking. Not for Ralph but for my mother. This morning while I was in Atlanta buying wine for my daughter’s wedding, the nursing home called to say my mother needed to go to a hospital emergency room because her Coumadin levels would not go down. So I rushed to the nursing home (almost an hour away), then followed the ambulance to the hospital, another forty-five more minute drive, where she was admitted to the ER.  At around 4:30, while they were running tests, I drove home to check on Ralph,  drop off the wine that was sitting in my hot car, and grab an apple since I missed lunch.

I got back to the ER in less than an hour, at 5:30 on the dot, but Mom was furious, sure I had been gone for hours.

Two hours later the doctor came by to say her levels were back to normal and her overall health looked good. So I followed another EMT vehicle back to the nursing home, stopping at Arby’s so I could pick up Mom’s favorite dinner before heading back to the farm where Ralph was already asleep.

It was a long day but throughout my mother was as alert and lively as she’s been in over a year. At 96, she is bedridden, can’t hear or see very well but has a memory more intact than Ralph’s. She does suffer bouts of confusion, seeing people who aren’t there in what I consider heightened daydreams.  I would daydream heavily too if I were as bored as she seems to be. At the ER, she was thrilled both by the attention she was receiving and all the emergency room activity going on in front her. Her major worry was  that I wasn’t home to make Ralph’s supper. So when we got the upbeat results I called him and handed her the phone so she could tell him the good news.

During the nine years my mother lived with us, she and Ralph developed more of a relationship than they’d had during the previous 24 years of my marriage during which Ralph sensed she never fully approved or accepted him. He was probably right. Still he was a good sport when my she moved in. He wasn’t thrilled at giving up our privacy (and neither was I) but I think he was a little proud of being the only one strong enough to get her up—she is not a small woman—when she fell as she did more and more frequently toward the end of her stay.

I decided last fall that she needed to go into a nursing facility, in part because she was requiring more care than we could offer at home even with full-time caregivers, but also because Ralph had been diagnosed by then and I wasn’t sure what he was going to need from me. (Of course, I didn’t mention that reason to Ralph or even fully articulate it to myself.) At first Ralph was all for the move but as it approached, he began to question my decision. It was as if he were beginning to identify with her. Still, in the end, after a particularly scary event involving a 911 call,  everyone in the family agreed that she had to be moved.

Ralph and my mother have not  seen each other since she entered the nursing home. And they won’t see each other as long as she’s there, in other words for the rest of her life. He does not need to smell the hallways and see the patients lolling sideways in wheel chairs, talking to themselves,  staring into space or grabbing at everyone who passes. He does not  need to peek into the half-lit rooms like the one where my mother lies dozing most of the day. His unspoken fears about his future are strong enough.

As Ralph puts it, “it’s too depressing.”

Still, he asks me daily if she seems happy, and I always answer yes, she does.

Special Delivery

daily life with MCI/Alzheimer's, , , , , , ,

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.

A Little Awkward Self-Congratulation

Caregiver/Spouse Issues, , , ,

Thank-you Alzheimer’s Wife for nominating me for the “Very Inspiring Blogger Award.” Since you have travelled farther along the road of Alzheimer’s/Dementia/Cognitive Impairment, I am genuinely touched that you find my posts worthwhile.

Having begun blogging just three and a half months ago in late April, I am still learning the rudiments so please forgive me if I screw up while following the Award Rules…well really, there is no excuse but I’m pretty sure I can’t follow the rules completely.

Rule 1.            Thank and link to the amazing person who nominated you.                                      See above for my appreciation of Alzheimer’s Wife who is always loving without pretending dealing with her husband Bo is not difficult. I think it is very important (and very difficult) for caretakers to be realistic about what we can and cannot do. I also want to mention the first blog that inspired me: The Alzheimer’s Spouse, whose chronicler Joan is currently facing the final stages of the battle.

Rule 2.            List the rules and display the award.                                                                                       This one is easy at least. See the award in the sidebar

Rule 3.           Share seven facts about yourself.                                                                                              Ugh, but here goes:

One. I am a city girl whom Ralph dragged kicking and screaming to our rural farm twenty years ago. Now, while I don’t quite fit into farm life, I find the city unbearably noisy and chaotic.

Two. I am 63, Ralph is 67, and we have been married for almost 37 years

Three. That marriage has really been more like three marriages—The first marriage, our first twenty years, was rocky and full of wrangling about everything from child-rearing to politics to the move to the farm; the second marriage included the few years of quiet and reconnection after the kids were out of the house (and despite the arrival of my mother ten years ago); the third marriage has just begun, and I imagine it will slip into a fourth marriage down the road.

Four. I am the oldest of four children and was never close to my mother so it is ironic that she ended up living with Ralph and me for nine years (with the help of excellent in-home care) until we placed her in a nursing home last October at age 96.

Five.  Seeing the importance of Long Term Health Insurance, I made sure Ralph and I purchased it. Ralph thought I was being over-cautious but Thank God we bought it when we did.

Six.  I find giving facts about myself difficult even though I write a blog that goes into intimate detail about my marriage and my life.

Seven. I am not a computer illiterate blogger. In fact I never read a blog until Ralph’s diagnosis when I started Googling for information on Alzheimer’s and Cognitive Impairment. In fact I am technically impaired in general, as Ralph and our children will tell anyone who asks.

Rule 3. Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.                                                                                                                                       See the seventh fact above. I have to admit I don’t follow that many other bloggers. But among those few I have discovered so far and not counting those above, the following are my two favorites, bloggers I’d like to hang out with over a cup of coffee and whom I hereby nominate:

Before I Forget  is written by Mrs. Hsg, an incredibly brave British woman who was diagnosed with Alzheimer’s several years ago. Not only is she brave, but she is also funny. And her British take on life is thoroughly refreshing.

Enterthestorm is a new blog written by a woman whose situation sounds uncomfortably like my own. Her posts so far have been straightforward and heartfelt, painful but irresistibly honest to the bone.

Rule 4.  Proudly display the award logo on your blog and follow the blogger who nominated you.

DONE

Sometimes a Little Rant Helps

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , ,

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.

Joining our Early Alzheimer’s Support Group

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 A few posts back I wrote about my first one-on-one encounter with another spouse/caregiver. Reader “boomer98053” commented that I might consider a support group. I did more than consider, I joined one ASAP. The eight-week Early Alzheimer’s/Mild Cognitive Impairment support group I settled on was supposedly for Ralph and me, but frankly I was the one feeling the need, and what appealed to me about this group was that the caregivers met separately from those they care for.

The week before our first meeting, I soft-pedaled as I do many decisions about our lives lately, telling Ralph we were scheduled to attend a training program. I doubted he would agree to anything called a support group. Or maybe I was projecting my own ambivalence about admitting either of us was the kind of person who needed the support of strangers. In any case I expected him to protest the way he did for most of our marriage whenever I made a decision without checking with him first.

Instead, he gave only one half-hearted sigh before agreeing he’d try one session. I quickly notated his calendar but didn’t mention it again until the morning of the meeting. I have learned it’s a waste of energy to remind Ralph about activities and dates ahead of time.

No surprise that he had no memory of any meeting to attend when I did tell him. The surprise was that once he checked the calendar he was perfectly willing.

As we drove to the meeting Ralph asked, “What is this new test going to be about again? I am sick of tests.” I explained that he wasn’t going to have to take a test this time. He was just going to talk to other people with early memory loss.

Then he asked again and I explained again. And again. Anxiety definitely affects his memory (and mine).

But once we both admitted we were both anxious, we laughed and relaxed a little. He almost seemed enthusiastic.

Then, less than a block away from the parking lot, Clifton Road was blockaded. We had to turn around and follow the line of other cars trying to find a new route. Circling around to enter Clifton from the opposite direction, we got stopped again. We ended up far out of the way.

Given we were going to be late if we made it at all, I expected Ralph to suggest we head home. And I was feeling almost frustrated enough to agree.

Instead, his anxiety had morphed into concern about missing the meeting. When we arrived half an hour late, just like everyone else, he was as relieved as I was.

Before the groups divided, the facilitator asked all of us to introduce ourselves.

Glancing around the room, I vaguely recognized one of the women as someone I had known slightly years ago although I couldn’t remember how. I began to fantasize about the friendship we would build over our common care giving until I realized she was the impaired one in her family.

When it was Ralph’s turn to speak, he said simply “I have a memory problem and am taking a drug that helps.”

Wow. I cannot describe the rush of pride and love and respect I felt.

In the separate meeting of the care-giving spouses that followed, we re-introduced ourselves in more depth, describing the problems we each faced. There were about the same number of men and women, most of us in our sixties, a couple younger, several older. We, or rather our spouses, had all received relatively recent diagnoses. We were all in some degree of lingering shock.

At first as the others described their situations, Ralph didn’t seem as far along as many of the others. Although I found the group congenial, I began to wonder if I had joined us up too soon. But the more we talked the more I found myself enjoying the honesty. That others got impatient too was an enormous relief.

Ralph looked less than thrilled when we came back together after an hour. But not for the reason I expected—not because he thought he didn’t need to be there but because one woman hogged too much of the time. He told me with some pride that the social worker had complimented him on keeping a calendar and being forthright about his problem He said the rest of the group seemed perfectly normal.

He seemed downright enthusiastic about returning. In fact as soon as we got home he added all the meeting dates to come down on his calendar.

If I Could Stick that MCI Diagnosis Back in Pandora’s Box…

Tracking Changes, , , , , , , , ,

 

I just read a couple of study summaries showing that people often have “accelerated cognitive loss” for up to four years, even six years before diagnosis.

Ralph and I were aware of problems a year or so before the diagnosis, but four years or longer? I have to ask myself, why didn’t I notice sooner?

Well, if I am brutally honest, I did notice some changes, but they seemed to be improving our marriage so I didn’t want to look too closely or rock the boat.

God knows, I had already spent plenty of years obsessively analyzing what I perceived as his shortcomings and my weaknesses in our long up-and-down relationship—a marriage between strong personalities who loved each other but were frequently at odds. But about five years ago, with both kids out of the house, we seemed to have entered a second honeymoon stage.

If he forgot what I told him more often than usual, I was used to him not paying attention. After thirty years together, I was used to hearing his stories repeated and repeated; so what if he repeated them twice in a day instead of twice a week. And I was used to our screaming arguments—we both had tempers—but here where the improvement had come: he no longer held onto his anger. If we argued in the evening, he woke up the next morning with no memory that there’d been a scene let alone any lingering hostility. He was more affectionate and more relaxed. (Actually he still is.)

So if he was forgetful or unfocused that was a small price to pay. I did silently question some of the business decisions he was making, but I chose to ignore the small voice in my head warning me that he was being sloppy or inattentive, making faulty investments and letting our family business slide. It was easier to leave business decisions to him. I didn’t want the responsibility. Pure selfishness. Of course ultimately, I ended up stepping in and picking up the slack in a hurry.

What secret fears and anxieties pushed him during those months and years? How much was he aware he was missing or losing? How much was he covering up for what he couldn’t quite grasp any more?

And if we knew it was MCI earlier, would our lives have been better or worse? I thought I was actually relieved to know when we first got the diagnosis, but Ralph was only more frightened.

Perhaps conventional wisdom is right that knowledge and acceptance are the more mature route, not necessarily to bliss but to a quiet appreciation of each day. But sometimes I remember that oddly happy time and wish I’d put off learning the truth; why enter the gray uncertainty we now inhabit any sooner than absolutely necessary?

Travel–My First Crisis as an MCI Spouse

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One of the sticking points in our marriage has always been that I love to travel but Ralph doesn’t, unless it’s to go fishing. So I was incredibly excited last spring, just over a year ago, when a friend invited me to accompany her family on a cruise through Northern Europe. Two weeks all expenses paid! Even my airfare would be covered!

Aware this might be my last chance for an adventure, I was dying to go. Ralph had been given the neuropsychologist’s initial assessment of MCI by then and we had recently visited the Emory Memory Clinic for the first time. But except for repeating himself a lot, Ralph was pretty much the same self-sufficient guy he’d always been– working in the office every day, fishing with his pals, arguing about politics. I told myself he could certainly manage  without me. Still good wife that I considered myself, I told my friend that I couldn’t commit until I spoke to Ralph.

I brought up the trip with trepidation, not sure how he’d react. He might not enjoy travel himself, but he didn’t much like being left behind either.

“No question, you’ve got to go.” Ralph’s enthusiasm surprised me. “This is an offer you can’t refuse.”

He seemed more relaxed than I was  during the flurry of preparations. Over the next month I bought walking shoes, stocked the freezer with the frozen potpies Ralph loves, planned a long fishing weekend to keep him occupied at least part of the time while I was gone.

Then Ralph woke up one up one morning, five days before I was to fly to London, and announced angrily that if I went on this trip, I might as well not come back. I lashed back at him with resentment and plenty of anger of my own. How could he wait until the last minute? What would I tell my friend and her family? Why was he such a controlling bastard?

“It’s your decision,” he said before storming out of the house.

We headed to our shared office in separate cars. The cadre of supportive, well-meaning woman friends I called as I drove all agreed: Ralph was being ridiculous; he might have minor memory issues but he could function alone perfectly well.

I eventually called the Memory Clinic for professional back up; after all, I had heard our neurologist say that Ralph had ONLY MILD Cognitive Impairment.

Talk about a bucket of water in the face!  Both the nurse practitioner and social worker explained what I should have realized—capacity to function aside, Ralph’s fear had to be respected.

I went to him and apologized. He said if I really wanted to, I should go after  all. Then we talked with more honesty and intimacy than we’d shared for a long time. He acknowledged fears that his condition would suddenly get worse—“What if I get lost while walking in the woods by our house and you’re not here to find me?” “What if my mind just goes out all of a sudden?” It didn’t matter that neither scenario was likely; his anxiety was genuine and intense. And for this proud man to admit any fear was huge.

Which meant I had to admit my own fear: my own high anxiety about my new role as caretaker-spouse of a husband with memory loss. I had been in selfish denial about Ralph’s MCI while planning my trip, but part of me knew all along that going away for more than a couple of days would be a mistake. Once I said I wasn’t going, I was oddly relieved: What had I been thinking to plan such a trip?

My friend refused to let me feel guilty about cancelling. Her father refused to let me pay him back for the non-refundable tickets. The kindness of strangers is nothing compared to the kindness of friends.

As for the two weeks I didn’t travel to Europe, I have no regrets. In fact those two weeks were a gift because I ended up going with Ralph on that long fishing weekend I had organized for him, along with my daughter and her boyfriend, and while we were all together, they got engaged. Now if I’d missed that….

Drinking and Smoking and MCI

daily life with MCI/Alzheimer's, , , , , , , , ,

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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.