Tag Archives: Alzheimers’ family

Evacuation and Alzheimer’s–The Perfect Storm

When the City of New Orleans announces a voluntary evacuation before Hurricane Ida, my daughter, son-in-law and I have to make a quick decision whether to stay or go. We decide to go. 

But it isn’t easy finding somewhere within a six-hour drive with room for seven people, including a 4-year-old, a 17-year-old and a10-month-old. More problematic are the two dogs, especially Ralph’s beloved, aged lab Zeus who has been visiting the vet every other day for a combination of laser treatments for his bed sore and acupuncture for nerve problems that make standing on his own impossible. Not a lot of choices pop up:  basically one place, in rural Alabama. It costs twice as much as everywhere else and is in the middle of nowhere but it takes dogs.  We book it.  Then I explain to Ralph we are going. Twenty minutes later I explain again. And again.

Saturday morning I explain again. Ralph has his usual leisurely coffee in bed while I start a load of last minute laundry before running out to pick up my granddaughter who will be riding with us and the dogs. We get back to find soapy water falling through the kitchen ceiling from the washing machine upstairs. Because old habits die hard and Ralph was always brilliant at all thinks mechanical, plumbing and electrical, I foolishly send him upstairs to turn off the machine and see if he can find a cause for the leak while I quickly mop up the floor. He comes down and says he turned off everything. I don’t double check. We somehow fit both dogs on stacked dog beds in our hatchback and take off.  

The four-hour drive takes eight (most of the delay getting out of New Orleans itself), but Ralph is actually enjoying himself because, per my granddaughter’s request, we listen to Bob Dylan the whole way. As we are about to make our last turn toward the rental cabin Ralph notices a sign to the next town 10 miles up the road. 

“Moundville. I worked there on a dig when I was 20.” He seems more animated than I’ve seen him in ages although he can’t remember many details. “The mounds were huge,” he brags to my granddaughter who at 17 is less than impressed. 

Sunday the news from Louisiana is not good, but texts from friends still in Nola remain upbeat. The weather where we are is fine and we are in bizarre evacuation elation mode so all of us, including the dogs, pile back into our cars to visit the archeological site now called Moundeville Museum.  We climb the many steps of the biggest mound, even Ralph. He is a little disappointed that the mounds aren’t as big as he remembers and that the park’s upkeep is not pristine, but he loves that the park is named after the professor he worked under. 

By that afternoon he has lost track of Moundeville since he is caught up dog care. We need to keep the dogs out of the small not particularly dog friendly house as much as possible. We keep them on the small porch as much as possible. I have walked Lola in New Orleans, but Ralph is not used to walking dogs, or to using poopscooper bags, or in having to walk himself period. I take care of the medications Zeus is on, both oral and topical, but lifting Zeus up into a standing position is a struggle that kills my already problematic back. I constantly needle Ralph to help despite knowing better.

Monday we learn about the power situation in New Orleans and realize it could be a week before we can go home, not the day or two we expected. My son-in-law’s uncle offers us his lake house in northern Alabama for as long as we need it. We pack up and drive further north. The cabin is lovely, with a lake view and the internet connection my daughter and son-in-law require to work, but it lies on a dirt road miles from the nearest store. We feel completely cut off from the world.

My sense of adventure is wearing thin. And Ralph’s coping abilities are faltering. Adapting to change was never easy for him and since Alzheimer’s it makes him miserable. He has lost all sense of humor as the rest of us try to keep our spirits up. He keeps forgetting why we are not home, keeps forgetting where home is. The two-hour drive with him to the lake house feels much longer as he asks the same set of questions over and over. Fortunately the lake house has a screened porch where he and the dogs settle in away from the rest of us—unfortunately the steps from the porch to outside are too steep for Zeus to manage.

My daughter and son-in-law have to work, remotely, fulltime. The teenager and I help care for the two little ones. But Tuesday I wake up with a seriously bad cold and by Wednesday have lost my voice and my back has gone out. I am only semi-functional. Ralph meanwhile sits on the porch with the dogs. 

I manage feedings and meds but nag him to walk the dogs. “Where’s a leash” becomes his common resentful refrain. What I am asking of him—walk a dog, pick up its poop and throw it in the trash—is unrealistic. Ralph is too slow, too confused, too frail. I find myself lumping him and his dogs together in resentful annoyance. Evacuation makes it harder than usual to live with a grown man who does nothing for himself.

Then because he catches my cold and I feel guilty. He sleeps nonstop for the next two days. When awake, for the meals we bring to him, Ralph seems more confused than usual. It reminds me of how much ground he lost two years ago when he was hospitalized for a blood infection. 

By the weekend, all seven of us are exhausted. There is still no power in New Orleans and no assurance from the outage grid map when it will come back. Togetherness is getting old. The kids are cranky and Ralph is crankier. But by (our second) Monday, when my daughter’s power has returned and she leaves with her husband and the boys for New Orleans, he has started feeling better and seems to have settled in. He has abandoned the porch to lie in bed reading or napping with the dogs on their beds beside his.  But if asked he helps walk the dogs and even poopscoops, though he forgets what to do with the green bags which I find left in odd spots.

The next morning, the grid shows our power is back too, hurray. We, meaning my granddaughter and me, pack up for the trip back home while Ralph mostly watches. As we load the dogs into the car’s hatchback (where they are remarkably happy travelers) Ralph can’t quite get a handle on why we aren’t home. 

“Is the vacation over?”

Stasis Defines this Alzheimer’s Marriage, At Least for Now

Stasis (from Greek στάσις “a standing still”) may refer to: A state of stability, in which all forces are equal and opposing, therefore they cancel out each other. Stasis (political history), as defined by Thucydides as a set of symptoms indicating an internal disturbance in both individuals and states.” From Wikipedia

Well Ralph and I definitely fit the definition, which I looked up after one of those small moments that clarify the big picture

 

knox toddlerWhile face-timing with me this morning, BabyRalph threw a little tantrum when my daughter wouldn’t let him hold the phone. As he kicked his legs, my daughter laughed, “He is becoming a toddler.” My emotional reaction was “Oh no, I want him to stay an adorable baby forever.” But of course, I also want him to grow up and am excited by every developmental step he takes. Just now, I had the odd and uncomfortable realization that my wishes for Ralph follow parallel lines, only maybe in reverse.

Ralph has maintained his cognitive abilities on about the same level for long while now, around five years. This plateau has been an incredibly lucky break for us. When I read and talk to other caregivers whose loved ones were diagnosed and then nosedived quickly, I marvel at Ralph and my good fortune.

We still live a mostly normal life, at least on the surface. If anything, Ralph’s routine has hardened and within its walls he functions very well. I keep his pillbox filled, his clothes clean, and his meals prepared just as if I were any wife (well any wife in the 1950s, although my housecleaning and disposition fail the Leave It to Beaver test). He spends most of his day in his “office,” even if all he does in the “office” is listen to the radio and talk to his dogs. So I have plenty of free time to carry on my life. We eat dinner together watching Jeopardy and then he goes to bed.

This is not a hard life. Yes there is the underlying stress of his shot memory and his general cognitive decline, the loss of his curiosity and engagement with the world beyond our mailbox. But really, life could be so much harder. Living with Ralph is now like living with a child who is not going to grow up. Whose developmental steps if he takes any will be backward, toward a kind of funhouse version of babyhood.

As much as I want BabyRalph to stay my snuggly grandbaby, it is fun to imagine him big enough to pull that rake in the picture above. I cannot and don’t want to imagine Ralph’s future. And yet I also have to admit an ugly truth. I imagine what my life will be like when Ralph’s cognitive abilities deteriorate with horror but also sometimes with a kind of relief. The urge to get out of the stasis–which in the case of Alzheimer’s includes both standing still and inner disturbance–is real, even when I know the escape will be to a much darker, harder place.

From Memoryland to Grandbabyland: Part One

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If I have been absent lately, I have a good excuse: My daughter gave birth to her first child, a baby boy she named after Ralph. BabyRalph is as adorable as every newborn—in other words his parents and grandparents find him an absolutely perfect specimen of infancy and expect everyone we send pictures to agree with us, whatever they really think.

The plan has always been that

1), Ralph and I would drive down to New Orleans once my daughter went into labor and stay for a few days after the birth before I drove Ralph home

2), I would then return to help out on and off as long as needed, having arranged plenty of back up help for him.

Needless to say I was nervous about both parts of the plan.

For one thing, Ralph was less than enthusiastic about going to New Orleans at all. He said babies scared him, and I believed him. He was always more a dog person that a small child person. While he was present as the births of our two kids, he is a proud member of the late sixties generation of macho activist guys that spouted feminism but didn’t actually live it. I’m sure he must have changed some diapers; I just don’t remember when.

As my daughter’s due date approached (and then passed), we all became more and more anxious. Ralph too. His concerns shifted from himself to the upcoming birth and all that could go wrong. He stopped worrying about his own travel. He started calling to check in on my daughter and son-in-law (Flyfisherman) nightly. When are we going down again? Do you know when she’s go into labor? became his new mantra, which he repeated throughout the day several times an hour. When the call finally came that labor had begun, he willingly got in the car, and he barely complained on the six-hour drive.

Once in New Orleans, things got a little trickier. Ralph does not like changing his routine and likes excitement even less. Fortunately the small AirBnB we rented had a little patio where he could smoke. Since labor was going slow and we were asked to stay away until BabyRalph’s actual arrival, Ralph stayed on that patio a lot while I picked up the other grandmother at the airport and BabyRalph’s twelve-year-old half-sister K from school. Fortunately Ralph also napped since we were not summoned to the hospital to meet BabyRalph until late that night.

On that first visit and again the next day, while Baby Ralph’s two grandmothers and an ecstatic K vied for turns to hold him in the little rocking chair the hospital provided, Ralph held back. He would not hold the baby and would only look at him from the small sofa across the room, not up close. The next day was the same until I sat on the sofa with the baby so someone could take a picture of the three of us together. Ralph looked at the baby. Ralph squinched closer. Ralph decided maybe, just maybe he’d try holding the baby.

Ralph took his namesake in his arms. Ralph began talking to BabyRalph. Ralph began singing Dylan songs to BabyRalph.  My daughter,  DaddysGirl, may have teared up a little. I might have too. We all snapped pictures of BabyRalph.Ralph held BabyRalph and held him some more, until it was time for a diaper change. It was a magical moment.

But it was only a moment. Ralph did not show interest in holding the baby again over the next two days before I drove him back to the farm where he greeted the dogs with great joy and relief.

Part One of the Plan was a success.

Part Two…. I’ll let you know soon enough.

Ralph, Captain Emiritus–An Alzheimer’s Transition Moment

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For as long as I’ve known him, Ralph’s love of  boats and boating pretty much summed up his identity:

A lover of the outdoors.    A sportsman who preferred active participation in physical activity to watching from his couch.     A competitor who found competing against himself (or a fish) as rewarding as competing against others.    A problem-solver whose knack for fixing  machinery matched his love of tinker.    A perfectionist who kept his gear shipshape.    A leader who reveled in being captain of his crew.

Early in our marriage, as soon as he had a little extra spending money, Ralph bought his first boat, a small daysailer. I was never a boater and I remember at least one miserable ride in the early days of my first pregnancy. Then he traded up for a racing sailboat he named HARD RAIN after the Dylan song—apropos since every time I was dragged onboard, not often,  a storm showed up too.  For years Ralph sailed almost every weekend, frequently both Saturday and Sunday, with my close friends as his crew, while I stayed home with our toddler(s); if you think you catch a whiff of  lingering resentment on my part, you might be right. But boy, Ralph enjoyed himself. He always came home whistling with a story to a tell

Nevertheless, around the time we moved to the farm, he sold the sailboat–a matter of distance and weekend farm chores. But in the early nineties we started spending time on the Forgotten Coast, that still unspoiled stretch of Northwest Florida . Ralph being Ralph, we soon owned a lot with a house trailer near a boat ramp. Ralph bought a used skiff with a motor that seemed to die a lot, at least when I was around. I hated that boat. Then he found his beloved Paper Moon, a boat he could maneuver in both shallow streams and the sometimes rough waves of Apalachicola Bay. We moved to a piece of land with a dock on the bay and a garage apartment, but no actual house. By then Ralph and some pals had formed a Fishing Club that met for frequent “tournaments” although active participation dwindled over time to mainly Ralph and his even more obsessive first mate The–Other-Ralph.

Then our daughter introduced us to the new man in her life. Ralph, ever distrustful of her various would-be suitors, accepted this one immediately for a simple reason: he was a serious fisherman, a fly fisherman no less. Fly Fisherman also hit it off with The-Other-Ralph.  The three started fishing together and Fly Fisherman willingly took on more and more responsibility for the less fun tasks like prepping the boat, organizing the lunch, and cleaning afterwards.

Over the last few years Ralph, who used to stay out on the water for ten hours straight whatever the weather, began coming home for lunch after a couple of hours, then finding reasons not to go back out in the afternoon with the others. By last spring when The-Other-Ralph’s family and ours gathered for a week of beach and boat, my Ralph found reasons not to fish at all—the heat was bothering him, he had a stomachache. Fly Fisherman ended up taking The-Other-Ralph and his family members out on the boat without Ralph. Afterwards Fly Fisherman cleaned and made repairs as well.

Since then Ralph has not stepped foot on the boat. When I suggested trips to Apalachicola he was less than enthusiastic. We’d get down there and he might cast his line from the dock but he would avoid even visiting the garage where the boat is stored. On a visit last fall, my daughter was dismayed to find the garage in disrepair with mouse droppings and nibbles on the seats.

Ralph’s boating days were clearly over. Still, if he could not quite admit that the boat had become a responsibility he didn’t need and could not longer handle, I wasn’t going to force the issue. And the idea of selling such an essential part of Ralph’s identity was an anathema. (Also daunting since I’d be the one in charge.) So what to do?

With Ralph, The-Other-Ralph and Fly Fisherman about to have milestone birthdays, although thirty years apart, my daughter had a suggestion.

Ralph looked at me askance when I mentioned the possible birthday present. “What if I want to use it?”

“You’ll get Fly Fisherman to take you out.”

The more we talked it over—and believe me we talked it over many times a day, often repeating the same exact sentences—the more Ralph liked the idea. No, loved the idea. Once our two sons, who have no interest in boats, and The-Other-Ralph gave their enthusiastic blessing, Ralph became gleefully obsessed with giving the boat to Fly Fisherman.

Here was his out–a  way to acknowledge his loss of interest, not to mention stamina and capability,  without losing dignity. He embraced as his own choice the possibility of keeping Paper Moon in the family while handing over the actual responsibility. He told everyone that he’d decided to give the boat to Fly Fisherman. The problem became making sure Ralph didn’t spill the beans about what we wanted to be a birthday surprise, but somehow the word did not get back to Fly Fisherman.

Last week, Ralph sent a birthday card to Fly Fisherman with a photograph of  Paper Moon on the cover and a short, funny note inside  i explaining n his own words that he was turning over the enclosed boat title.

He signed it, then had a thought and added a PS.

I still expect to be addressed as Captain when aboard.”

I breathed a sigh of relief both for the smooth transition and the proof that Ralph was still Ralph.