Category Archives: daily life with MCI/Alzheimer’s

Ralph’s Famous Adventure in Hog Killing —or Keeping the Stories Alive Despite Alzheimer’s

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

shutterstock_275552708

I was making dinner the other night when Ralph called me out to the porch where he was having his daily late afternoon cigarette and beer listening to the radio. A story on All Things Considered had piqued a memory from his childhood.

“Have I ever told you about the hog killing?” he asked.

Oh God, not the hog killing story again, I thought as he launched into it. How many times over the years have our kids and I have heard this story–how he was a little kid visiting relatives on a farm with his family one fall during hog killing season, how his easily hysterical mother started shrieking, how the gory killing is mixed into a memory of getting ice cream cones. But it’s a better story in his telling than mine.

“You know you should write that story down,” I told him. “All your stories, actually.”

He nodded. “Yes, I should.”

This conversation is not a new conversation. Every few weeks we agree he has a lot of great stories, and is (or was) a natural storyteller of the Southern charm variety. I suggest he get a notebook and write the stories down. He says, yes, he definitely will do that.

But given Ralph’s inertia fed by his place on the Alzheimer’s spectrum, that’s only going to happen if I make it.

And so far I have been a slacker. I tell him and myself I will get a notebook and set aside time each day for us to work on stories, but then I let the whole idea slip off my radar as quickly as it slips from his. His excuse is cognitive impairment. Mine is laziness at making one more effort. The discipline it will take for me to get him to get the stories down is the same discipline I need—and have so far lacked—to get him to exercise more. His lack of enthusiasm gets me off the hook and feeds my own penchant for lethargy.

But I am making early New Year resolutions. I need to get Ralph walking before he puts on more (not to mention my inches and pounds). More important, I cannot wait until Ralph and I are both inspired to record, whether on audio or in writing, his stories.

Because otherwise the day will come when I ask him to tell me one or he tries to remember, and the story is gone.

The Larry David Cure for Dementia

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LARRY david

It was just turning 8:30 pm. As usual, Ralph was already in bed with the lights out. He goes to bed by eight most nights and will sleep past eight in the morning if I let him. He is genuinely tired, but I also suspect that he doesn’t know how else to fill the time. Neither books nor television hold his interest for very long. Neither does music or the kind lengthy conversation he used to be famous for.

I was in another room half reading the newspaper, flipping TV channels, thinking a little guiltily about a recent comment from Going Gently into That Good Night about the way those with dementia suffer.

Mostly, though. I was feeling sorry for myself over having another long night alone—no need to remember that in my thirties and forties, a night to myself without family would have seemed a gift; that’s another story. Suddenly I stopped clicking.

Because there on some random cable channel was The Larry David Show. Actually an hour and half of Larry David episodes was listed on the schedule. I rushed into the bedroom and turned on our set in front of our bed.

Ralph grumbled when I woke him, but he sat up. After all,

“I am nothing like Larry David,” Ralph said when I reminded him how the kids used to tease him that he was Larry’s spiritual twin,  (Of course they teased me that I was the spiritual twin of George’s mother on Seinfeld) but soon he was sucked in. Ralph began to chuckle. I began to chuckle. Sometimes I had to explain a character who had been introduced earlier, but Ralph had no trouble following the complexity of the wit. We laughed out loud at the same jokes.

The three episodes flew by. It was ten o’clock and Larry was over. Some lame movie started, but  I wasn’t  ready to go to sleep. Miraculously, neither was Ralph.

I switched channels. Another miracle: there was Seinfeld.

seinfeld

And one of the classic episodes. Jerry’s car is stolen by his mechanic; Newman and Kramer try to make their fortune with a mail truck full of recyclables; and George, after being sent briefly to a mental hospital, can’t get a tune from Les Miz out of his head.

“This was fun, wasn’t it,” I asked and Ralph agreed. As he rolled over to sleep, I turned off the television plotting what other comedies we might watch.

Then I tried to sleep, but George’s damn song was in my head.

“Master of the house,” I sang softly.

Ralph hooted. I repeated the line. Soon we were whooping it up like five-year-olds.

God it felt nice. I honestly cannot remember when we last shared such a genuinely good time. No soft-pedaling or covering for memory lapses, no manipulating behavior, no compromising my needs for his, no resenting the limitations of our life.

Just Ralph and me laughing away on the same joyful wavelength.

2 ALZHEIMER’S QUESTIONS NO ONE CAN ANSWER

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DOES HE KNOW?    IS HE HAPPY?

These are the two questions people ask more than any others once they learn that Ralph is suffering cognitive loss due to Alzheimer’s.

Both questions should be easy to answer:    YES or NO.      Yet I can’t answer either for sure.

1. DOES HE KNOW?

What Ralph knows and what he acknowledges may or may not be the same thing.

He’ll be catching up with an old friend on the phone and I’ll hear him say, “I have a memory problem,” as if it’s just another inconvenience of aging like someone else’s arthritis.

I’ll show my annoyance about something he forgot to do, like feed the dog, and he’ll rightfully if self-righteously chastise me, “You know I have a memory problem.” Of course I immediately backtrack. (Not easy for an inveterate  nag).

But if the word Alzheimer’s comes up in general conversation, or more often in the media, he chooses to disassociate himself. There’s a TV commercial for Namenda that particularly bothers him because he  takes Namenda. He does not want to identify with the sweet old man on the screen. “I don’t have Alzheimer’s,” he’ll announce. “The doctor said I don’t have Alzheimer’s.”

Often I just nod. After all, his most recent cognitive tests show he is holding onto the smudged borderline between Alzheimer’s and Mild Cognitive Impairment. But if I slip and remind him, “The doctor explained what it means that you have the plaque build up associated with Alzheimer’s,” he’ll go very quiet.

And if I ask him pointblank how he thinks he’s doing, whether he senses any changes in his cognitive abilities (changes I do sense but don’t bring up), he says no, he’s fine. If I mention  a specific cognitive lapse, he denies it.

I understand:   He wants to be in control.

2.  IS HE HAPPY?

 He SEEMS to be, at least as happy as he’s ever been:

He laughs more. He’s less impatient. He loves his dogs. He loves his nutty buddy ice cream cones for dessert after dinner, which he also usually loves (without the critiques of my cooking he used to make). He loves his cigarettes and his lite beer. He loves sitting on the porch. He loves his farm. He says he loves fishing although he doesn’t often make the effort to fish anymore. He loves me, as he’s told me more times in the last six months than he ever did in the previous 40 years we’ve been a couple.

But what he’s thinking and feeling inside I don’t know. For a man who loved to talk politics and philosophy all night, he’s gone awfully silent.

And really, if you ask whether he was particularly happy before his memory began slipping, the answer would also be I don’t know. He’s always been moody, though less so now. And like many men of his generation, he’s never been big on revealing or analyzing himself.

Still, I can’t help wondering if boredom is the reason he sleeps so much now that he’s not interested in what’s going on in the world–or if not boredom, a desire to escape from thinking about his situation. He doesn’t voice the fears he must have about his future, and I don’t push him (well, a little) or ask point-blank if he is happy. I don’t want him to ask me back.

I am not sure how I would answer…

RALPH LOVES TO TALK BUT… PHONE COMMUNICATION WITH THE KIDS

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PHONE

The big issues connected to Alzheimer’s and dementia are almost too hard for me to grasp at this point despite the never-ending stream of factual information pouring off the internet and in the media. It is the small moments that capture what it means to live with memory loss.  For instance:

When I get home in a grumpy mood after driving my daughter through rush hour traffic to catch a plane, Ralph is in his usual spot, the front porch rocking chair, with cell phone to his ear. I head inside without stopping to ask whom he’s talking to.

After all, Ralph has his regulars: one loyal friend who checks in weekly, his sister, and the oldest of our three kids.

He talks to his sister almost every day. Both have a lot of time on their hands. Often they can talk for over an hour. Whenever I ask what they talk about, Ralph shrugs. “Small talk.”

He talks to our oldest son almost every day. If Ralph is laughing, but again, I assume it’s Josh, but again when I ask what they’ve been talking about, Ralph says “Small Talk.”

Our much younger two kids love their dad but they are of the text not talk generation. Their phone conversation with their dad are fewer and farther between.

So I was surprised when Ralph came inside and said he’d been talking to our younger son Jacob.

Surprised and pleased until Ralph added, “I called him but he didn’t seem to want to talk. It was a short conversation. I don’t think he likes me. Was I a bad father?”

This is no excuse, but I was hot and tired when I answered with the truth. “Not exactly but not always very nice. You weren’t very supportive.”

Ralph gave me a heartbreaking hangdog smile. “I wish you hadn’t told me.”

“But you asked.” (I know, I know, I could kick myself.)

“You should have lied.”

By then I was already desperately texting with Jacob: Dad said he called but you didn’t seem to want to talk. / Really??? It didn’t seem that way to me but ok / I made it worse because I said he was kind of mean / LOL

Jacob immediately texted Ralph saying he hoped he didn’t sound “out of it” but he’d just  come in after riding his new bike home from work. Evidently they had talked at length about the bike during their not hour-long but not short conversation.

Of course, then I had to figure out to get Ralph to find the text since he never checks for texts on his fliptop unsmart phone.

I waited about twenty minutes, said my phone was dead, asked him to check his because I was expecting a message from our daughter to let us know if she made her flight. He said he didn’t know how. We looked together.

“No message from her, but look there’s one from Jacob,” I said casually and read it to him out loud.

“Why would he send that?”

“I don’t know. Didn’t you talk today.”

“Maybe so. I don’t remember. But this was nice of him.”

Guilt, angst, manipulation, all for nothing maybe. Or maybe not. Ralph went to bed smiling.

Alzheimer’s and The Downsizing Decision, So Far Deferred

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Driving to the recycling center the other night, I was listening to NPR when a story came on about a man with Early Alzheimer’s. Naturally my ears perked up.

Journalist Greg O’Brien has been chronicling his advancing Alzheimer’s in a series of reports called Inside Alzheimer’s. For those facing their own or a loved one’s Alzheimer’s, especially in the early stages, this series from NPR is worth checking out. A range of subjects are covered from telling the kids to hallucinations, to caregiver anger. Not all the topics may be relevant to your situation but you’re bound to find one that connects.

For me it was definitely the piece the other night. Greg and his wife have decided together that it is time to sell their home on Cape Cod and downsize before his condition deteriorates. Greg talked about packing up with the help of his kids and about the pleasure of finding mementos that vividly brought back to life the family’s past.

As Greg talked, I knew Ralph was sitting at home on the porch listening to NPR and I worried how the story would affect him, wondered if he would compare himself to Greg. Because frankly I was comparing them—the same way I compare Ralph to all of my on-line friends who write such articulate blogs about the early stages of Alzheimer’s.

You are all so strong, so wise, so likable in describing your struggles.

I admit, I can’t help what I know is an unfair thought process: wishing Ralph could be more like you and push himself to live life to the fullest. Of course, I know that I am being unfair. It is as if I am asking Ralph to get over this cognitive glitch, as if he it’s his choice, so he can start remembering and I don’t have to be so responsible.

Greg’s involvement in deciding to sell his home was really hit me because I really don’t know how I am going to get Ralph to leave our farm. And the time is approaching. I spent the morning looking at real estate. I am thinking of moving us, at least part-time to New Orleans where my daughter and her new family have relocated so we can share childcare with Ralphcare.

Ralph knows this, sort of. Sometimes he can analyze the pluses and minuses with helpful perception. Sometimes he thinks spending time down there is a great idea. Sometimes he looks at me as if this new idea, which he is sure I’m presenting for the first time, is nuts.

This possible move of ours is the biggest  financial, emotional and logistical decision I have had to make since Ralph was diagnosed with MCI/Early Alzheimer’s. It affects both of us.

[I would love to hear how those of you in similar situations have decided when a change in housing is necessary–whether it’s been a matter of downsizing, moving into special housing, or even living apart–and how you handled the decision-making.]

Personally, this is the kind of decision I used to let Ralph make. I would offer my advice, would influence his thinking; but for all my feminist posturing, I preferred the more passive role—that way when things went wrong I didn’t have to take the blame.

Well those days are over. Women taking responsibility for our lives is great in theory, and probably in practice–I will explore the definite advantages of feeling empowered in another post soon. Right now I can’t remember what they are. All I am feeling is that I have no choice but to take on the power of decision-making for the two of us, and after a lifetime of back-and-forth compromise (mostly my compromise that I often resented), holding that power can be scary and lonely.

Ralph and Lola

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lola day 1

So we have a new puppy.

Ralph is devoted to his lab Zeus. The two of them spend most of Ralph’s waking hours together, up in Ralph’s office, where Ralph supposedly paints while Zeus dozes, out on the porch where Ralph drinks beer and smokes while Zeus dozes, or at the kitchen table where Ralph eats and reads while Zeus begs for scraps when he isn’t dozing. One reason I can’t get Ralph to go out to dinner, let alone away for a vacation, is that he doesn’t like being away from Zeus.

But Zeus is eleven, maybe older. He has epilepsy. And weighs at least 85 pounds. Big dogs don’t live as long as small ones. So for a while I have been worrying about what would/will happen when Zeus goes. We are not dog buyers usually. Our dogs have come to us through friends or through the pound or because they wondered up tagless. But given the reality of Ralph’s prognosis with Alzheimer’s, I began to think a companion dog with special skills might be in order. Plus I loved the idea of a non-shedding  fluffy dog and maybe a dog that was in the 30-pound range. I also worried that if I waited too long, Ralph would not be able to help with training a puppy—I am not by nature a dog person myself and have never trained a puppy. So last month I registered with a labdoodle breeder to be on the wait list for a mini-doodle puppy.

Evidently a labdoodle is not in my future however.

Because ten days ago I walked into my gym and my Pilates instructor announced she had just picked up a stray puppy and didn’t know what to do with it. The dog had wandered or been dropped at a busy neighborhood intersection. She’d already been to the vet who found no i.d. chip. Everyone in the gym was gaga over the lab mix puppy, which had on a collar but no tags and seemed underweight but not mistreated. With her pale blond coat and dark eyes, she looked like a mini-Zeus. Very mini. Whatever part of her is not lab is something small, a terrier or maybe a beagle. She—my teacher, not the puppy although come to think of it her too—gave me one of her most winning, beseeching smiles. I called Ralph. We agreed to foster the puppy and maybe keep it if no one claimed her. The signs and Facebook announcements were already going up.

Ralph immediately named her Lola, as in “whatever Lola wants…” My granddaughter came to visit and fell in love. So did my daughter. Zeus not so much. Ralph and I tried to keep our distance in case someone showed up. But Lola was, is, awfully cute. No one called. I took her for shots and signed her up for puppy class. She began to house train in earnest.

Which means I am house training her. I am also feeding her and teaching her to sit and come—as far as I’ve gotten in basic dog etiquette. Basically I do all the disciplining and getting up at the crack or dawn and at midnight for “do your business” walks. Ralph cannot keep straight what and when Lola eats or how much to feed or that she needs to go out when she whimpers, but Lola adores him and vice versa. He is the one she sleeps with on the couch. She follows him everywhere when she is not following Zeus, who has gradually learned to tolerate her. I admit I resent that she needs me as soon as I sit down at my computer, and I also resent that she prefers to snuggle with Ralph. It is baby rearing all over again.

But I realize it is good we have a dog to train now rather than later, when it would be too much for Ralph even from the sidelines. I was about to write this up this afternoon when my cell rang.

“Do you have Lola?” Ralph was calling although I thought he was downstairs with the dogs.

“No, you saw me go upstairs.”

“I came up to the barn. I thought you had her and now I can’t find her.” Basically, he couldn’t remember if he took her with him to the barn or left her in the house. I said something snarky that I shouldn’t have and ran downstairs calling her name.

“She isn’t in the house.”

“Stop blaming me. We have to find her!”

Ralph’s calm in a crisis was always one of his signature traits, but not anymore. He began to panic, the way he does these days.

I went outside and called her name but was worried myself. We live on acres and acres of pasture and farmland. It would take no time at all for a small dog to disappear. At the front of the house, I called again. She came running from the direction of the barn.

The good news: Lola comes when called and will probably grow into the perfect companion dog for Ralph. The bad news: I really can’t expect Ralph, who has raised countless dogs over the years, to keep track of the puppy he loves.
ralph and dogs

ps.  Ralph says he thinks we should get the labdoodle puppy for Lola to play with.

A Summer Moment

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Here’s a poem for a change of pace. I feel a bit shy posting it here, but It does capture Ralph’s life at this stage of his cognitive impairment better than  a longer explanation perhaps. I have had some trouble with formatting so hope this looks ok….

A Summer Moment

Black birds part the clouds, a river

fast and noisy as Mountain Creek itself

casting its black shadow across the grass.

The noisy rush of wing and throat and beating air

filters through the branches of dogwood and oak.

They come and come and are gone in a rush.

The air goes still.

Out on the porch where you rock and drink beer

the radio talks to you about tornadoes in Texas

and politicians whose name you rarely remember.

The dogs sleep at your feet, their dog breath

thickened by the smoke from your cigarette,

your brain a black river of lost thoughts.

Ralph Makes a Liar Out Of Me–By Reading

Alzheimer's and the Arts, daily life with MCI/Alzheimer's, , , , , , , ,

Well Ralph has made a liar out of me (probably not the first time, and no doubt not the last).

In responding to Mary Smith’s comment on last week’s post, I wrote that Ralph doesn’t read anymore. And at the time it was true. He hasn’t read a whole book for several months. Similarly, these days the long newspaper or magazine articles he used to relish don’t hold Ralph’s interest because they have too many facts to keep straight. The kind of serious movies we used to see together are often too convoluted for him to sort and remember now; every one we have seen in the last six months has been “too long and confusing.”

He will still ask almost daily for a book recommendation, put the book by his bedside table, but then let it sit there unopened on the growing pile. Yesterday he asked me if he’d already read some 400-page tome on top of the pile, a non-fiction history I knew he’d begun many times. Instead of going through the motions of pretending that monster read was viable, I had a brainstorm and suggested a very short novella, Ashes in My Mouth Sand in My Shoes by Per Petterson, instead. Ralph sat down and finished it in one reading. A young boy’s narration of his relationship with his father, written with childlike clarity, Ashes turns out to be the perfect book for a man with a short attention span to read (or have read to). Actually, it is a lovely book for anyone to read. Petterson writes about children and about men with startling sensitivity. His other books tend to be quite dark (if wonderful), but Ashes is more elegiac and bittersweet. Ralph obviously loved it.

I have been struggling for a while with the dilemma of how to engage Ralph’s interest and exercise his brain, not with any illusions of curing him but because he still likes to be engaged and the old ways don’t work.

And short stories are, well, short. Plus the emotions and psychology they explore require exactly the kind of intuitive response Ralph remains adept at giving. In fact, if anything, he is more intuitive than he has ever been. So after he finished the Petterson, I gave him Tenth of December by George Saunders. Not exactly light fiction and very serious, but as I said, short. And if he reads the same story over twice, who cares. What’s more, since they are short we can both read them and discuss.

I am pretty excited to discover I was wrong to think Ralph was beyond reading. For now, the choices have merely changed, well changed and narrowed….I have no illusions that the narrowing won’t continue, but  enjoy what we can while we can is my new motto.

Money Talks….

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According to a recent article in the New York Times: “As Cognition Slips, Financial Skills Are Often the First to Go.”  financial cognition is one of the first skills to go. According to Ralph: Money talks, bullshit walks.

When we first met, Ralph was something of a hippie entrepreneur. By the time he was thirty, he’d dropped the hippie part and considered himself a real estate entrepreneur—buying, renovating, managing and leveraging small apartment buildings–while I pursued my less than financially lucrative writing ambitions. Then his longtime bookkeeper quit suddenly and I had to take over the day-to-day bookkeeping. At the time I didn’t want to take on that responsibility, but in retrospect I am really glad I did. When I needed to liquidate the business two years ago, I knew the basics, like where the checking accounts were, but also the larger framework of how to run the business the way Ralph did. He remained the one who made the serious financial decisions, but I watched and learned.

And what I learned was to be obsessively careful. I used to tease him about the way he analyzed and re-analyzed every business decision, going over and over the worst case and best case scenarios, ‘running the numbers’ as he called it. So what struck me in reading the Times article was this line: “It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits.” Ralph’s last three investments were frankly terrible.

Luckily those were his last investments. Unfortunately, they were his last investments because Ralph’s follow-through was also going. Ralph always took great pride in being “a closer.” So what I saw as his flagging interest in following through caught my eye as a problem sooner than his forgetfulness. I realize now that he probably no longer trusted his own judgment. He went through the motions, but he had checked out at least a year before his diagnosis. He sat in his office reading catalogs and magazines while letting his assistant and me run things. Fortunately, he’d done such a good job training us that we did fine for awhile.

We may have lost some money due to Ralph’s MCI, but I am kind of glad Ralph had that time to loosen his hold on the business. A grace period.

Because once we had the official diagnosis of Mild Cognitive Impairment, there was no pretending. And by the time I decided to sell the business, Ralph’s impairment was greater while his interest in anything financial had dropped to zero. The man who loved to spend days doing profit loss projections can no longer figure the tip on a restaurant tab.

Flowers and Laughter, Ralph’s Perfect Gift

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Ralph's birthday flowers

These are the roses Ralph gave me for my 65th birthday.

Sixty-five feels like a biggie. Like everyone I know my age (except Ralph who has been saying “I’m an old man” to explain his cognitive impairment since he was, well my age) I don’t feel old. Physically I am in good health; I get plenty of exercise and, despite from those pesky escaping words and names, keep myself mentally challenged. But at 65, the fact of no turning back is staring me in the face. I have begun worrying about my sight and hearing, about the limp that still plagues me 18 months after my broken ankle, about a certain timidity that has crept into my driving. To say I’ve been obsessing about this birthday would be putting it mildly.

But then again I have obsessed over birthdays  for as long as Ralph and I have been together.

And with good reason. For most of those forty odd years, my birthday has been a day of recrimination, guilt, and tears. He almost never remembered unless one of the kids reminded him and he was terrible about getting me a gift or arranging a dinner out. I started winding myself up in a knot of resentment days ahead so by the actual day I was impossible to please anyway. One year I locked myself in the bedroom in tears rather than eat the Kentucky Fried Chicken he’d picked up as my last-minute birthday meal. But with age come a little wisdom and more patience. Also small miracles.

Since Ralph was diagnosed with memory loss, his memory has actually improved in one area, my birthday. In fact birthdays, like Christmas and our anniversary, highlight the ironic upside of our life with Early Alzheimer’s—Ralph has become an overt romantic. Boxes of candy and flowers appear magically on the big days without prompting (at least none I know about). And I have found appreciation for his effort comes much easier, especially since I have embraced planning the celebration myself (this year, because it was a biggie—the end of middle age, the beginning of Medicare—has included dinners with friends and dim sum, both attended with Ralph, plus a trip to visit my son in New York by myself since Ralph is no longer willing to travel)

So yesterday morning, I lounged in bed drinking the coffee Ralph had made me when he walked in the bedroom with a bouquet of roses plus a card. I’d guessed he’d been out present buying the day before when I caught him driving into the driveway in his truck, and I have to say the fact that he picked out a card was probably more meaningful that the flowers. But they looked lovely, the reddest roses I’d ever seen. I couldn’t believe he’d found them at Kroger’s.

Proud of himself, he went off with the flowers to find a vase. But he couldn’t find one–I used to blow glass so there are vases on every flat surface in our house–so I reluctantly got up and found one for him him. Then he couldn’t get the flowers unwrapped. So I took them from him.

“They’re not real.”

“But they were in the flower cooler at Kroger’s.” He felt the petals and considered. “You know I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed. “Well these will certainly be a gift that lasts.”

“Yes they will,” I agreed.

“I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed a few minutes later. “Well, at least these will certainly be a gift that lasts.”

“Yes they will,” I agreed again.

We must have laughed together for half an hour. And again telling the story to our friends at dinner, especially after a friend suggested to Ralph, “Put them away and give them to her again next year.”

And again when another friend admitted she had a sunflower at home that was suspiciously fresh after three weeks and she better get home and check it.

And what makes the laughter delicious and the story one we’ll keep telling is that it could have happened to anyone, not just someone with cognitive impairment or Alzheimer’s related memory loss.

I have to admit, this has been the best birthday ever, or at least since I got that brownie camera when I was six.