Tag Archives: Alzheimer’s spouse

Our New Best Alzheimer’s Buddies

 

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So the other we got together with a couple we met years ago and always liked although we saw each other mostly at parties thrown by mutual friends. Or at the grocery store—actually I have run into the couple surprising often at Publix, every six months or so. We always end up talking in the aisle for ages, promising to call to make a date that never happens.

We got together this time through another mutual friend who thought the couple might be interested in buying our farm. At her suggestion I called “Jo” and “Jordan” who invited me to stop by their house in town to talk. I had another meeting scheduled at 2 so I dropped by at one for a quick visit. Once I sat down, it became clear we had more than real estate to discuss.

One of them Jo has been having some memory and confusion issues. Their internist, (who happens to be my internist as well) recently sent them to a local psychologist who gave Jo the ten minute memory test, which Jo passed.  But Jo and Jordan both sense something is wrong. And they know, because I told them one day in the bread aisle, about Ralph’s diagnosis.

So for an hour they talked about the problems Jo has been having and asked me questions in an atmosphere of mutual trust. Before I rushed to my other appointment, we agreed they should come out to see our farm the next day (although it was clear they were not going to buy it). In the meantime I printed out research information and the phone numbers of resources.

The next afternoon Ralph and I spent several hours with Jo and Jordan. It was different from any other socializing we have done in years.  We all chatted a little. Than while Ralph took Jordan off to show off the farm, I spent time with Jo. Then we all spent time talking together, going deep and honest fast. We shared details and insights about our current situation. Ralph was articulate about what he feels and struggles with, as was Jo. Whether or not Jo’s cognitive problems will lead to a diagnosis similar to Ralph’s, they share similar difficulties and it was obviously they found describing their problems to each other easier than they have to outsider.

“Oh yeah, I get that.” was the mood of the afternoon.

So what made the afternoon so special, was that it was so relaxing. Ralph and Jo didn’t feel forced to be together, the way Ralph felt when he the support group (at my insistence), but it was obvious he and Jo could talk openly in a way Jo never would normally in a group. There was no anxiety about trying to keep up.  Instead there was laughter over the kind of memory jokes my friends and family would probably never make in their sensitivity to Ralph’s condition. But we could with another couple facing the same issues. God it felt good.

Of course, the bittersweet news is that we’re moving away soon, but meanwhile I envision spending quite a bit of time with our new best friends. And once we move, finding Alzheimer’s friends is going to be a priority, one I’ve not really considered until now.

Future Ready? Not Quite Where Alzheimer’s Is Concerned.

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I have not posted much recently because I’ve been caught up in a flurry of moving preparations (although the move is months away), arranging repairs and renovation at the new house, starting the process of getting rid of stuff at the old. And in that flurry I have probably not been paying as much detailed attention to Ralph as usual. But we just spent half an hour together in my car after dropping his car to be serviced. In that time we had this exact same conversation close to ten times, approximately every two to three minutes:

What else do we have to do today?

Dr. Ling at 1.

What time will the car ready for us to pick up?

They’ll call us when it’s ready.

Should I leave the dogs locked up?

Yes, because we have a doctor appointment.

 

I’m used to the repetition of course. But it seems to have become more intense lately. I casually asked him whether he’d noticed any changes in his memory.

No. Have you?

Yes, I said then caught myself so added to soften the blow,

But then again my memory is worse too.

In fact, it is worse and I worry frequently about a factoid I read early on—that Alzheimer’s caregivers are statistically more prone to develop Alzheimer’s than the general population.  Every time I lose my keys, cell phone, or someone’s first name I do panic a little. And to my dismay, those occasions are increasing.

But Ralph loved my answer.

Well, that’s not going to be good, he laughed. We’re going to be rambling around the house saying “Who Are You?” to each other.

Yep. I forced my own laugh, thinking of the changes I am making in our new house to make it both wheelchair accessible and generally easier for caregiving down the road. Ralph is not ready to think about that possibility in a real way, but I have to. Just writing that makes me realize why my anxiety level has been high and why I have been avoiding posting here—the act of moving brings our future into stark, unavoidable relief.

When Forgetting The Past Becomes Remembering the Present Wrong

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“So, Alice, when do we have to leave for the birthday party”

I come home at five in the afternoon to find my husband showered, shaved, and dressed in a clean shirt. Sounds great, doesn’t it, Ralph getting ready on his own?

Only problem is that the  party he is talking about is a dinner I wrote about here weeks ago. The one he clearly didn’t enjoy attending at the time.

“We aren’t going to a birthday party.”

“Are you sure. Well, why did I think we were?” Puzzlement all over his usually placid face.

“I’m don’t know. We had dinner for H’s retirement three weeks ago.”

“We did? I don’t remember.” It is almost physical, how hard he is thinking before a memory takes shape. “Oh yeah, it was boring. Well, I’m relieved. I spent all afternoon dreading the birthday party.”

“Since you’re dressed, why don’t we go out to supper?”

“I don’t feel like going out. It’s too late.”

“Are you sure.” He is spiffed up after all, and it would be good to get him out of the house and his rut. Also, frankly, I wouldn’t mind not having to cook.

“No, I don’t feel like going out anywhere.” He shakes his head, standing by the door to the porch. “You sure you didn’t tell me we had to go to a party tonight. Why would I think we were going to a party?”

“I promise, we went to dinner for H’s retirement three weeks ago. Maybe you had a dream while napping and it felt real?”

“Maybe.” He shrugs and heads onto the porch, unlit cigarette already  in one hand, beer in the other, dog at his heels. We will repeat the same conversation throughout dinner but now, clearly shaken, he needs time to himself (as do I).

The way that facts once forgotten can’t be retrieved has become our normal problem as an Alzheimer’s couple, annoying but easily handled. But now Ralph has presented me with a created, or rather mis-created memory. A new process has misremembered, twisted and reshaped a fact before lodging it in Ralph’s brain. Will our new normal problem encompass not simply a loss of Ralph’s sense of the past but a reshaping of his present reality into something unpredictable, unreliable and disturbing.

I Commemorate my Dad’s 100th Anniversary; Ralph Celebrates Him Daily

scotch.jpgMy father would have turned 100 yesterday if he were still alive. Ralph and I celebrated with one of Dad’s favorite dinners: roast beef with truffle sauce, or rather a cheap cut of beef I found on sale and a dab of Croatian truffle olive spread we received as a gift.

“I really miss Charles,” Ralph said several times during the meal. Charles was my father. Ralph brings him up almost every night at dinner. And frequently at other times as well.

“You know I was thinking about your dad today.” “Remember the time your dad….” Charles was a character.” “I really miss old Charles.”

Me too.

My father was tall and elegant, charismatic if not traditionally handsome (bald but in a Yul Brenner way), an extrovert both charming and domineering. And he definitely had a temper. My siblings would agree that he was a better father to his daughters than to his sons, who were made to feel that they didn’t live up to his standards and expectations. My sister and I adored him, and as a little girl I never doubted that he adored me back, but our relationship grew complicated during my teens as I began to rebel. We never quite regained the closeness.

But if anything redeemed me in my father’s eyes it was Ralph.

Ralph and Charles were soul mates. They came from completely different backgrounds—my father the son of a Russian Jewish immigrant who made good and sent my father to an Ivy League college, Ralph the son of a Pentecostal mother who spoke in tongues and a father raised dirt poor in the hills of Alabama with ancestors who fought in the Civil War and possibly the American Revolution—yet they recognized themselves in each other from their first meeting.

They liked to schmooze as my father called their never-ending conversations about business and politics. Again, it would seem they had little in common. My father ran the business his father had started; Ralph was an entrepreneur just starting his real estate business when they met; my father was a Nixon republican, Ralph still a socialist when I introduced them. Nevertheless they talked and they talked and they talked, often loudly though never angrily, into the wee hours long after my mother and I had gone to bed. No doubt they were fueled by scotch, my father’s drink of choice, which he introduced to Ralph.

After a restaurant dinner with my parents months before Ralph and I ever discussed marriage, Ralph told me that my father had proposed while I was in the ladies room. My father used my absence as an opportunity to tell Ralph he would be very happy to have him as a son-in-law. I am not sure how Ralph responded.

Of course I was pleased that my father approved of my choice in husbands, but I admit I was also a bit jealous that my father clearly enjoyed Ralph’s company more than mine. I can only imagine what my brothers felt witnessing Ralph and Charles’s rapport, a rapport they did not have as Charles’s sons.

As for Ralph—whose own father, a skilled but uneducated mechanic, was a master sergeant when he retired after twenty years in the air force and never quite adapted to life as a civilian—he suddenly had the father he’d always wanted. He listened to my father’s advice with rapt attention. He lapped up the affection and praise.

And when my father died at 73, Ralph mourned much more deeply than he had when his own father died.

Months later, a whippoorwill settle outside our bedroom window at the farm and Ralph and I began to joke that the bird was my father’s reincarnation keeping us up at night . It was a comforting joke, an intimacy I look back to now with nostalgia, but it was a joke, a way to ignore or minimize sorrow.

Since Ralph’s cognitive impairment began, my father has loomed larger in his memory. As I have mentioned before, Ralph only holds onto happy memories these days. And his memories of my father are among his happiest. In the last few years he has decided that my father’s old marble top bar, now in our small formal parlor, is haunted by my father. In a good way of course. At least several times a week he calls me to come into the room because he senses my father’s presence.

Pre-MCI Ralph might have joked about a whippoorwill, but he is completely sincere now. And his belief is NOT a case of dementia. It is a case of affection so strong that it has taken a shape or at least a form. For all the negatives of Alzheimer’s, Ralph’s ability to feel purely is really a joy. And I am a little envious of his relationship with my father all over again.

Alzheimer’s and Nurturing Men

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I was picking out apples at the grocery story yesterday when I noticed a woman having a kerfuffle over by the oranges. After she knocked over a small display, her husband rushed to her side and gently steered her away. As I picked up the display, I couldn’t help watching how he spoke quietly to allay her anxiety and confusion. Walking walked past him on the way to the spinach, I whispered, “You are a lovely man.” (To be clear I was not being flirtatious and he was definitely not lovely in any literal sense.)

A few moments later we found ourselves standing together by the avocados. I explained to him that I spoke to him because I wanted to make sure he got credit for the nurturing way he dealt with his wife. I said I understood his situation as a spouse caregiver myself. The look of calm that washed across his face was different that gratitude or relief, was closer to what I imagine war veterans must feel when they connect. We talked for maybe a minute or two and then I moved on before he could see that I had tears in my eyes.

One of those brief moments that reverberate and reverberate.

But it got me thinking, not for the first time, about how much harder it may be for husbands than wives, at least those of my boomer generation. We were a generation who adopted feminism but were not born to it. There was a lot of intellectualizing about women and men’s roles, but there remained an emotional pull to the way we were raised. The men, however “progressive” or “liberal” or even “radical,” paid lip service but under the surface, our roles only shifted so far.

So men now in their fifties, sixties and seventies with wives who are struggling with impairments are having to learn to nurture the way women in similar situations have known how all along. And men like my grocery store friend are stepping up. I am amazed at their openness about how hard it is and their willingness to go all out. Frankly they often seem more open and more willing than I am.

Like many a good feminist of my generation I have never been above a little vicious, resentful man-bashing, let alone husband-bashing. But this is my little shout out to the guys. We are all in this together.

Alzheimer’s As Public Health Issue

ALZE_NPD_24p_04.01_08_06_12.Still012.jpgfrom Every Minute Counts

PBS is airing a program entitled EVERY MINUTE COUNTS about the importance (is that the right word…danger? risk? cost?) of Alzheimer’s as a public health issue. It will be telecast this coming Wednesday, January 25, 2017, at 10 pm.

I have not seen the show, only the promotional material, but being someone who tends to view Alzheimer’s and degenerative cognitive disease through the narrow lens of my personal experience as the spouse of someone on the Alzheimer’s spectrum, I look forward having the chance (is that the right phrasing… will force myselffeel a responsibility?)  to examine the larger social and economic effects.

For those of you with access to American television:

EVERY MINUTE COUNTS   10 pm  Wednesday, January 25, 2017   your local PBS station.