Tag Archives: ALZHEIMER’S AND FAMILY

Ralph–A Change of Perspective

Ralph and I just spent almost a week in New Orleans together babysitting while my daughter and son-in-law were away. With the change of scenery came a change of perspective.

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Here on the farm, life plods along. We get up in the morning and drink our first cups of coffee together and then we go about our days.  I have various deadlines, meetings, and activities at home and around town that keep me active so I’m not necessarily paying attention to how Ralph is filling or not filling his time. Of course I check with him regularly to make sure he is following his life list and of course he calls me repeatedly—whether over the phone or in person from the bedroom to the kitchen or over the phone from the bedroom to the kitchen—to ask whatever question has lodged in his brain for the day. And yes I am increasingly involved in getting him to do small activities (Did you take a shower? is one of my favorite nags and is about to go on the life list) and driving him to doctor appointments. But I don’t yet have to think about him minute to minute.

In New Orleans, we were much more in each other’s faces. While BabyRalph was in pre-pre-school, Ralph and I were alone in a house with an open floor plan where neither of us had space to escape to. Ralph wasn’t tucked away in an office or the bedroom. Ralph actually found the stairs to the bedroom too steep to climb more than absolutely necessary, a fact I have to note as I look for a house for us. He was either on the living room couch “reading” (mostly with his eyes closed) or on the back porch smoking. I was sitting in the kitchen trying to concentrate at my computer as he asked me repeated questions when he wasn’t sleeping.

And then there was the smoking. At home, although it drives me crazy that I can’t sit on my front porch anymore, I can almost ignore his smoking. In New Orleans I was responsible for a two-year-old who cried to be with his Bop. If I said, “Bop is outside,” BabyRalph said, “I want to go outside with Bop.” Of course I couldn’t let him outside with Ralph, or to play in his own backyard where the smoke from Ralph’s cigarettes hung paralyzed in the damp heat.  And each time Ralph came back inside, he had to, or at least had to be nagged to de-cigaretize (i.e., wash his hands, etc.,) before he could be around BabyRalph.

And he did love to be around BabyRalph. In the late afternoon for a few hours, Ralph and BabyRalph were inseparable. While they played, and that is what they did-play—I was free to clean up the house and get dinner ready. Ralph was fully engaged with BabyRalph in a way his own children never experienced him.  Of course, we are all more playful and relaxed with our grandchildren than we were with our kids. But there is definitely added-value in Ralph and BabyRalph’s case. Ralph was energized by BabyRalph because they share sense of presentness. BabyRalph has very little past to remember, while Ralph has very little memory of a lot of past.  And neither thinks about the future.

But I do. And what I have realized is that the biggest reason to move to New Orleans is not that we need to downsize or get and give family support but that Ralph needs to interact regularly with BabyRalph, oops now ToddlerRalph, as much as possible because those interactions bring him to life in a way nothing else does.

TAKING THINGS IN HAND

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So big confession: I have been in a great mood lately.

Is that allowed? I ask.

YES! I answer (except I can’t help that little gulp of uncertainty. Is someone whose spouse has a degenerative neurological condition allowed to be happy?)

Nothing dramatic has changed in our present to make me happier. Ralph seems pretty much the same although he now needs his written schedule of reminders in a way he didn’t a few months ago and I’m including more details. His energy also remains about the same, i.e. low. A glitch in the Emory study has held up his supply of experimental Ritalin but I haven’t noticed any drop—in retrospect I realize that the slight uptake I’d noticed before Christmas was more situational than medical and disappeared once he was home and back in his routine.

The change is in my focus. Facing that we were not going to end up in Apalachicola seems to have opened a door for me. The future may not be the one I planned, but it is lying out there for me to shape. There is a relief in acknowledging what I have to let go. So Ralph and I will not be travelling together (but really he never liked to travel to the same places I did) or going to movies together (see previous parenthesis). And yes, I will be making all decisions about our finances and health and homes and meals for that matter. And yes his location on the Alzheimer’s continuum will slide downward and there will be difficult choices to make. I see the clock ticking.

But taking things in hand has energized me.

I have made some decisions involving our rental properties, our main source of income, including renovations Ralph might not have done but are necessary for our millennial tenants who demand more than the hippies, slackers and gen-xers who used to rent from us.

More important, I have decided about our living situation. I have told Ralph we are moving to Nola in two years. Actually I have told him daily.

Conversation #1:

“In two years I’ll be too old to live isolated out here. The driving will be too difficult. I think we should move to Nola.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Maybe.”

Conversation #2:

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live isolated out and doing all the driving will be too difficult.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Well, I guess.”

Conversation #3,4,5,6…

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live here isolated and…

 

A real estate agent is coming by Monday to discuss a sales strategy for the farm (not an easy sell). Dreading having Ralph present and running off the agent in some of the ways he has run off various servicemen, I screwed up my courage this morning and told him about the meeting because I’m not ready to not tell.

“Do you want to be there?”

“Not really. You can take notes can’t you?”

So basically, Ralph has more or less acquiesced. I am left to handle the details (and keep reminding him the plan). The thought of moving and all it will take is daunting. But also exhilarating. So yes, I have been on Zillow quite a bit. But ironically, I’ve also found new enthusiasm for my life now. I have more going on in my professional life than in several years. And I’ve started drawing lessons and am sitting in front of pad and pencils instead of the television. I’m even dieting, sort of. Is this joy or an attack of mania, I’m not sure, but I don’t feel manic anxiety.

I know things will get more complicated. I know I am in for sorrow. But right now Ralph and I are traveling more or less together. I don’t mind being his navigator, car mechanic and chauffeur because I still have the luxury of being able to pursue my own interests.  As for Ralph, he’s willing, and less unhappy than I’d expected, to come along for the ride as long as he doesn’t have to drive.

Celebration Amid Stress

flowers                                              my bouquet from Ralph (with help from our daughter)

 

For most of this autumn all I could think about/write about was the tractor (back in the shop for yet more repairs due to user-error I suspect), which became the symbol of the stresses of life with a spouse on the Alzheimer’s spectrum. Now I find myself writing yet a happy description of our life for the second time in a row! Perhaps we have reached another plateau or perhaps I have adjusted to whatever plateau we have been on for a while…

The dangerous temptation to think Ralph is somehow getting “better” also pops into my mind, especially because as always happens, visitors over Thanksgiving commented that Ralph seemed better than they expected. He was better that usual because as also often happens, he is more alert and less passive around others—if he’s comfortable with them–than when alone with me. Since he was also the more genial, gentler post-diagnosis Ralph, he was a generally entertaining presence.

Not that rough patches didn’t abound in an eight-day week with a houseful of guests on the farm. But the stress caused by the tensions and physical ailments of other family members and friends had nothing to do with Ralph. If anything, he helped smooth some of the week’s rougher patches.

He also began to enjoy his grandfather role more, both with his older grandkids and with his namesake grandbaby whom he began to hold and cuddle even without being asked. In fact this morning, in our suddenly quiet house, he said he missed BabyRalph—who though exhausting was certainly not a cause of stress.

And Ralph really got into the small-scale festivities surrounding our 40th wedding anniversary. Actually so did our kids, who did a kind of countdown to midnight (and made us stay up way past our bedtimes) on anniversary eve, then opened a bottle of bubbly that we all shared while listening to the John Prine/ Iris Dement duet of “In Spite of Ourselves” that is considered by some to be “our song.” As we all shared that moment of silliness and laughing, a moment of euphoria, part of me couldn’t help observing in a kind of awe that I was having an experience with Ralph that I haven’t for a long, long time—the sense of being on equal footing, of standing together on the same ground, of being a wife more than a caregiver, of being loved not simply needed.

 

 

 

 

 

A Birthday Gift to REMEMBER

 

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We had a small dinner party for Ralph’s birthday last week. His favorite roast chicken and the above birthday cake, which made him laugh. As long as his sense of humor holds I figure we are doing ok.

As we stood around waiting for the chicken to come out of the over (a slight mechanical failure in pushing buttons having caused the cooking time to stretch longer than expected),  conversation turned mildly political. No one was disagreeing but people were analyzing causes and results.

Ralph suddenly became very heated, in a way he never gets these days, and accused a friend of talking down to him. Shortly afterwards he headed out to the porch, to smoke I assumed. A few minutes later he was back, relaxed and charming.

The same friend who’d just upset Ralph began discussing how his poor hearing has created problems for him when he has conversations. I could see Ralph was listening carefully and that the two men were bonding in a new way. Without any overt statement they were acknowledging and empathizing.

I was so enjoying this pleasant moment after the earlier upset that I almost didn’t bother to check my phone when it beeped that I had a tex. I’m glad I did.

The text was from my son

“Don’t tell him I told you but dad just told me he couldn’t keep up with ur convo and felt like he was ‘slipping’. Maybe make sure he’s being included. I think he stepped away from table to call me or something.”

“I told him ‘who cares’ just do your own thing blah blah.”

I texted back about the little almost argument and how much better Ralph seemed.

Oh good. I mean honestly was really weird cause he sounded really really down when he called. And then I kinda said that he like did sound a lot better, like a switch flipped. Was actually eager to get off phone and get back.”

I texted back that I found it “interesting” that Ralph trusted our son enough to call him under these circumstances. They have never had an easygoing relationship. Not understanding and even a little intimidated by his bookishness, Ralph recognizes he was too hard on our son as a kid and now is almost shy around him.

“Yeah, I was surprised, it was sweet.

The rest of the evening was a rousing success, Ralph more involved and emotionally present than he’s been for some time, and more openly affectionate with our friends than I have ever seen him.

But for me, the moment of pure between father and son (and mother and son) is the birthday gift that keeps on giving.

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P.S. Speaking of gifts, after one more crisis concerning a flat tire, the tractor finally seems to be working!

 

 

 

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.

RALPH TRAVELS TO BABYLAND WITH MIXED RESULTS

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The picture above of Ralph holding his namesake may be a bit misleading. During the recent ten days Ralph and I spent in New Orleans to hang out with our now three-month-old grandson, Ralph held babyRalph exactly twice.

And that was after much prodding.

But he did hold him. And he did survive ten days away from the farm. (In fact I had booked an airbnb for ten days knowing we might leave early if necessary.) So over all, I’d say it was a victory, a pyrrhic victory…

He was not unhappy. Our son came down from NYC to surprise Ralph and meet babyRalph. Big Ralph was pleased and quite animated the first night. After that he read his book and napped a lot on the couch while the rest of us cared for and played with babyRalph in the next room.

Mostly Ralph drank coffee or beer and smoked cigarettes on my daughter’s front porch. Pretty much the same way he fills his time at home. Fortunately, my daughter recently moved into a renovated New Orleans shotgun with both a front porch. By the second day, Ralph had met pretty much everyone on my daughter’s small street where the neighbors all interact —white, black, Latino, gay and straight, elderly and hipster. Everyone thought Ralph was charming because while talking to strangers who demanded only the smallest small talk, he came to life. But with us inside, he was slightly removed, in a vague fog or intimidated by the hubbub surrounding the baby.

Frankly I found grannynannying while watching out for Ralph exhausting. Physically exhausting because I was running him back and forth from the airbnb where he slept twelve hours every night while I helped with the baby’s early morning feedings. And definitely emotionally exhausting as I tried to be grandmother, mother, wife and caregiver.

On the drive home, we shared what has become a rare moment of genuine conversation. Ralph acknowledged that travelling seems to make his memory worse, that leaving the comfort of his routine was difficult for him. I said I could see that. Then we went back to listening to a Bob Dylan cd.

But the unspoken message hung in the air—no more travel for Ralph.