Category Archives: daily life with MCI/Alzheimer’s

Oh Christmas Tree Oh Christmas Tree

tree

This is a pretty Christmas tree, no doubt about it. It is the tree I always wanted, the kind they sell on lots strung with white lights. The kind that doesn’t shed, that can hold all our decorations, even the heavy ones. Even the dogs love it (actually I bribed them with treats  to be in the picture; they are a little afraid of it).

For the last twenty-five years, I have not had a tree like this. Instead, Ralph and I with assorted children….

I have to stop here: A moment of déjà vu. Have I written this before?

Yes, a year ago. I just went back and found my little story about Ralph and me cutting our tree and the line For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields.

I forgot I wrote about our Christmas tree last year. Here is more from last year’s story,  the crux of  what I titled “A Little Christmas Joy”:

I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went… two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great….. I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.

Reading what I wrote a year ago is a jolt of reality. The annual Christmas tree hunt is the perfect metaphor for the ways in which Ralph and my life has changed.

Ralph was definitely not eager to get a tree this year. (When did Ralph stop saying things are “too much trouble? Now he says, “Tomorrow” and “I’m too tired.”) Every time I suggested it was time to go out tree hunting, he said “What’s the hurry?” I explained, less than patiently, that I wanted it up so I could get it decorated before I started cooking and baking for the crowd that will descend (and that I considered not inviting this year —all three kids and various assorted other family members and friends that add up to between 13 and 18 houseguests but who’s counting?–but am now glad are coming because Rick wants them here and by next year who knows).

This back and forth went on for days. I said, should I go buy a tree. He said no, we would get our tree on the farm as usual. I said, well let’s go out now to look. He said tomorrow. Tomorrow. And Tomorrow.

Then some friends came out for an afternoon visit. The idea was that the husband R. would take a walk with Ralph because Ralph’s daily “walk with the dogs”—his main exercise—has become a drive in the truck. No surprise that Ralph was not enthusiastic about a walk but he was willing to go tree-hunting in the truck with R. They returned quite proud of themselves, and reeking from snuck cigars, having marked two trees with colored ribbon.

The next day, at my repeated urging, Ralph and I went together to check out the tree. It was lovely. I said let’s cut it down. Ralph said, What’s the hurry? I’ll do it tomorrow.” I said, not entirely patiently, “We need to get the tree.” I arranged with our farm helper to meet Ralph  since Ralph said he’d lost his number. I  told Ralph,  “He can do the cutting down. You just need to be there.”

In my mind, I was letting Ralph stay in charge, which seemed important at the time, but now I wonder what I was thinking.  Why didn’t I go myself?

They returned empty handed. According to Ralph, the tree wasn’t as nice as he thought,  the saw blade was too dull, it was going to be a big job. I asked if we should get the blade sharpened. Ralph shrugged. Tomorrow.

I could see in his face that I was asking too much. I said, “Should I go buy a tree?”

He brightened immediately. “That’s a great idea.”

His relief was palpable. One more activity to struggle through off the list.

So after twenty-five years I have the tree I always wanted. But I am incredibly sad every time I look at it. It is a benchmark, a sad reminder of the changes in our lives– Our first Alzheimer’s Tree.

Travels With Ralph

nola

 

This week was an adventure. Like all adventures, it offered highs and lows, memories I want to savor and some I’d rather forget.

Thanksgiving in New Orleans, with my daughter who lives here and with my son who met us there, was our first trip together, and Ralph’s first time away from the farm, in probably two years.

The last trip was to New York City for a wedding. He had no interest in making that experience into an actual vacation. He attended the official events, but otherwise I could not interest him in leaving the hotel even for a short walk around the neighborhood. All he wanted to do was nap. At the time I didn’t understand how much he needed those naps so I spent the two and half days in a general state of mild annoyance.

So, while I was thrilled at spending four days with my kids in a way we seldom do, and in a way we may not get to again, I approached this week with trepidation. As did Ralph. For the last month, each time he tried to remember the plan, I tried not worry if this much travel demanded more than he was capable of handling. Four days away from his familiar routine is a lot to ask.

On our trip to NY, the greatest stress for Ralph had been the actual travel—not only the time in the air but the airport with its crowds, its lines to maneuver and all the possibilities it offered Ralph to get confused or, worse, lost—our drive to Nola was actually pretty easy. For the six hours plus, I drove while he smoked and asked me questions over and over. We listened to the radio. It was actually kind of relaxing for both of us.

And he loved our small funky hotel in a converted mansion with its side garden where he could smoke….you might notice that smoking and Ralph’s ability to smoke has become a theme not only on this trip but in our life together.

These days I accept Ralph’s need for sleep and on this trip I made sure there was plenty of naptime. If anything, I let him sleep more than I do at home.

He needed to be as rested as possible because he was expected to take part in all activities with the kids. We ate great meals, we went for beignets, we walked along the river and down Magazine Street. We waited in line at Preservation Jazz Hall, where Ralph loved the music even though he had to stand the whole time. He loved laughing over jambalaya and drinks afterwards even more, loved walking through Jackson Square singing “The Battle of New Orleans” with my son-in-law as they vied to see who knew more of the words (a tie).

We spent Thanksgiving Day preparing a big meal at my daughter’s apartment listening to music, teasing, laughing, having the usual family spats and just hanging out together. Telling family stories Ralph was in his element, more the Ralph of years past than he has been in ages.

The description above is how I want to remember the week. But a shadow of tension followed me everywhere. “What’s the agenda?” he would ask and then ask again—questions I am used to answering over and over but my kids are not. At meals, I would suddenly realize that Ralph either wasn’t paying attention or had given up trying to follow the conversation the rest of us were having. Every time he needed to use the restroom in a restaurant I went on alert to make sure he could find his way there and back. He couldn’t follow the TV shows we sat around watching. Every few minutes he wondered aloud, “I wonder what the dogs are doing.” He went outside to smoke and went outside to smoke and went outside to smoke.

The good times, and they were good times, were a lot of emotional work for both us. I realized how much I have not only arranged my life around Ralph’s but how Ralph’s cognitive issues have played into my own tendencies toward over-planning and over-worrying, not only about him but about most areas of my life. What is most worrying is that I see how my own boundaries have narrowed, that I have to work doubly hard to keep myself engaged with the world beyond the parameters of Ralph’s MCI/Alzheimer’s.

Ten minutes ago Ralph climbed into the backseat of my car, headed back to the farm with my daughter and her husband who will fly off tomorrow on a vacation abroad (another anxiety producer given recent world events). I have stayed here in New Orleans to babysit my granddaughter for a week.

I know Ralph will be fine. He has been alone before, my son is going to stay on the farm with him a good part of the time, and various friends will be checking in regularly. His drugs are all marked, his calendar is filled in, there’s a week’s worth of meals ready, and I’m a phone call away.

But I am also a nervous wreck. Of course, maybe that has less to do with Ralph and more to do with taking charge of an 11-year-old girl who is a lot less easy to boss around than Ralph.

Keeping the Stories Alive Part 2: My Infamous Adventures in Recording

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Many of you will be glad to know I followed your advice and have begun recording Ralph’s stories.

Sort of.

My saga of good intentions gone awry began a few days after my last posting–and the many comments encouraging me to get those stories down–when I brought up to Ralph the possibility of collecting his stories. He was not exactly excited.

“I can’t write it all down.”                                                                                                                                                 “Then we’ll tape them.”

“I don’t like my voice on tape.”                                                                                                                                                      “We can tape and then transcribe onto the computer.”

“I don’t type.”                                                                                                                                                                                     “I’ll do the transcribing.”

“I don’t have any stories worth telling.”                                                                                                                                          “Let’s make a list of ideas.”

“Why are we doing this again.”                                                                                                                                                          “To give as Christmas presents to the kids.”

That last seemed to get to him. So I wrote down a list of ideas and we talked a little about each until his memories of his youth started tiptoeing back.

The plan was that I record Ralph on a digital recorder—the kids would not want cassettes from the apparently obsolete machine I have used for years—and then transfer the stories to flash drives for the kids. My local Apple guy told me to go to Radio Shack for the best choices and assured me that all I needed to do was make sure the digital recorder was “Mac compatible”. That sounded easy.

I bought the recorder that clearly said “Mac compatible” and the guy at Radio Shack spent half an hour teaching me how to use it.

That afternoon, Ralph and I sat on the porch for our first story. The hog killing. He complained he could barely remember, but once he got started, there was no stopping him. One remembered detail sent him toward another. The result was a great story.

Ralph was hooked.

He immediately launched into a second story about his Aunt Della, including generations of family lore.

Then I tried to transfer the stories to my computer and save them. The directions, at least the ones in English, were vague at best. I was able to plug the recorder into the computer and a file would show up, but nothing would save. I am not the world’s greatest techy, but I sensed something was seriously wrong above and beyond my ineptitude.

Although Ralph was raring to go with more stories, I was afraid to continue.

I returned to Radio Shack the next morning. My still helpful clerk Corey couldn’t get the computer to save the recorded file. He suggested I go to the Apple guy. The Apple guy was also willing to help. After much fiddling and frustration, as closing time approached he graciously installed some kind of music program he was semi-confident would take care of things. If not, I was to come back in two days, after his day off, and he’d figure things out.

Guess what still didn’t work.

I went back. Apple guy called Apple. He then apologized. Being “Mac compatible” is evidently not adequate after all. I went back to Radio Shack. Although I had obviously used the recorder, Corey gallantly exchanged it for “MP-3 compatible.” Then he spent another half an hour teaching me how to transfer from recorder to computer.

I came home and told Ralph we’d need to re-record his the stories he’d already told because they were lost.

“Why are we recording these stories again?”                                                                                                                      “Christmas presents.”                                                                                                                                                                    “Oh yeah, that’s right.”

But it was already time for dinner and then bedtime. The next day I was tied up, then yesterday he had his art class. So here we are three days later.

Ralph is ready to start recording. He likes the idea of giving the flash drive presents. “It’s great we’re doing this.”

It will be. The problem is that now I’m not sure I remember how.

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

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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

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

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

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.