Tag Archives: marriage and memory loss

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.

My Confidence in His Competence–The MCI Conundrum

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

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.

Long Term Health Insurance

Support and Research, , , , , , , , ,

I usually write personal stories here, leaving the science and practicalities surrounding memory loss to more qualified sources like the Alzheimer’s Association website. But this morning I gave the following advice to a friend who suggested I share it here. If you are reading this blog, you or someone close to you has probably been diagnosed with memory loss and may not qualify for long term insurance, but for the rest of you, especially caregivers, I have three words:  LONG TERM INSURANCE.

It isn’t cheap and the costs and benefits vary according to your situation. But it is easy to research on the government’s long term care site. For balance read the less than enthusiastic report in Consumer’s Report and then visit AARP’s longterm care calculator site. There are several sites that compare rates of providers. I am not saying BUY, but at least look into the possibility.

I will always be grateful to my mother for setting an example before it was too late for Ralph and me to consider long term insurance for our uncertain future.

She purchased long term insurance after my father’s death when she was over 70. Fifteen remarkably independent years later, she fell into a depression and stopped eating. Although we’d spent my childhood, adolescence and young-to-middle adulthood not much liking each other, age mellowed us both into polite if slightly stiff cordiality by the time I flew down to stay with her in the retirement condo Ralph had helped my father purchase years earlier in Key West. Key West, where I’ve had some of the best times of my life including my honeymoon, lost all its pleasant associations during the miserable two weeks that followed. Finally the visiting nurse gave my mother two choices: one, continue starving herself with the understanding that I would not be able to stay as long as it took for her to die; or two, fly back with me to Georgia and get medical care.

We flew to Georgia the next day. For the next nine years, until weakening health required her move into the nursing home where she resides now, my mother lived in the mother-in-law suite fortunately installed in our basement already.

And it was okay, not great exactly, not what my father would have called “a bowl of cherries.” Sure there were crises (like when she called 9-1-1 the night I neglected to go down to say goodnight after getting home from a movie) and the family issues that always arise among near and far adult children when a parent is failing. But what would have been a completely untenable situation, emotionally and practically, worked out only because that long term insurance. offered a financial safety net.

Purchased so late in my mother’s life, the insurance had payment limits and an end-point, which she reached about three years ago. But for seven years Genworth promptly paid about half the salaries of the excellent full-time caregivers we hired. Social security and an annuity paid most of the rest. Her savings held more or less steady—a good thing since her nursing home is not cheap and those savings are coming in handy.

Three years ago when Ralph started getting those notices that he would soon be eligible for Medicare, I suggested we re-examine our insurance situation. Since both of us have always been self-employed, we’ve always kept our cost down by carrying a very high deductible. After all, as Ralph pointed out, we didn’t need more insurance because we were both extremely healthy.

But so was my mother as I pointed out.

We called AARP who recommended Genworth, which happened to be the provider that was working so well for my mother. After some back and forth and a visit from a knowledgeable if less than personable insurance agent, Ralph agreed to go ahead and buy the insurance. He had not been diagnosed back then of course and I was not consciously acknowledging any change; in fact we joked together about his bad memory when we had to take a memory quiz to qualify as low risk applicants for the best policy available. We both passed. I can’t help wondering, if we had waited a year or even six months, would Ralph be insured now?

Thankfully, he is insured. And just as important, so am I. We don’t need extra help right now. But given the way Alzheimer’s progresses, a time may come when Ralph requires more care-taking than I can offer alone. And even now, if my health took a downturn I know I couldn’t count on Ralph to care for me. Having the long term insurance means I don’t have to.

So, at the risk of repeating myself–which I do all the time these days anyway so what’s one more time–consider buying long term insurance as soon as possible.

Decide if you can afford to buy the insurance, and if you can afford not.

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

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

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

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

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.

The Arsonist by Sue Miller: Early Alzheimer’s Realistically Portrayed

Alzheimer's and the Arts, , , , , , ,

I read a lot of novels in the alternative universe where I write reviews for a publishing trade magazine. I try to read as objectively as possible to judge if the author’s language, characters and plot come together in a way that moves, challenges and/or entertains.

Once in a while a novel or story comes along that I can’t help connecting to on a more personal level, and that is definitely the case with Sue Miller’s new novel The Arsonist. The novel is about a small New England town where tensions between summer and year-round residents intensify when a series of suspicious house fires occur. The ostensible heroine is Frankie, a single woman in her forties returning home to stay with her parents at their summer place, and the novel largely revolves around her ambivalent romance with the local newspaper editor covering the fires.

But for me the central characters were the woman’s parents, the long-married Sylvia and Alfie. Though madly in love in the beginning of their relationship Sylvia has become increasingly disillusioned with Alfie, a self-important academic. Frankie has always adored her father and always been piqued by what she sees as Sylvia’s “only-slightly-veiled contempt, or disdain.” The reader is viewing Sylvia and Alfie through Frankie’s eyes, at least at first, and to Sylvia Alfie seems unchanged; but even early on my antennae went up—Sylvia’s protective yet resentful attitude to her husband and his “projects” seemed uncomfortably familiar.

And sure enough, it’s not long before Alfie gets lost driving home along long familiar roads and Sylvia has to admit, to herself at least, that Alfie is “failing, the thing they’d both been aware of in less critical moments, that they’d talked about, gingerly, over and over.” What makes the moment disturbing is not simply that Alfie has forgotten, but that he so quickly turns helpless and passively willing to let Sylvia take over.

I was hooked.

From here until I put the novel down, I found myself skimming through the descriptions of the fires, only marginally interested in the who-done-it mystery or the romantic moments between Frankie and her good-natured new beau. What I cared about with increasing anxiety was Alfie’s gradual but escalating loss of mental capacity and how Sylvia, a highly competent, self-aware woman still young enough to maintain her fully active life, reacted.

There is no sugarcoating or sentimentality here, and no easy solution. Without giving away more of the plot, I promise that Sue Miller captures exactly the reality of being the spouse (or child in Frankie’s case) of someone with Early Alzheimer’s. The guilt, the anger, the protectiveness, the moments of affection and the moments of furious impatience. I didn’t simply identify with Sylvia; I felt as if Miller had excavated my own psyche. Sylvia may be a fictional character, but she is me.

Memory Loss and Money Matters

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

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.

Is MCI Dementia?

Support and Research, Tracking Changes, , , , , , , , , , , , ,

Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.

Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.

It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.

Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”

He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.

What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.

I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).

It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:

“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.

Symptoms of MCI include:

  • Difficulty doing more than one task at a time
  • Difficulty solving problems or making decisions
  • Forgetting recent events or conversations
  • Taking longer to do more difficult mental activities

Early symptoms of dementia can include:

  • Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble with the names of familiar objects
  • Losing interest in things previously enjoyed, flat mood
  • Misplacing items
  • Personality changes and loss of social skills, which can lead to inappropriate behaviors”

No surprise that Ralph hits the mark for all four symptoms of MCI.

As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.

He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.

Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.

Not yet.

Joining our Early Alzheimer’s Support Group

Support and Research, , , , , , ,

 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.