Tag Archives: Alzheimer’s caregiving

“Does It Get Easier or Harder?”

Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

 Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

 

 

Back FromWhat Felt Like One Brink to Face Another

As usual we balance on the teeter-totter of good news and bad.

teeter

Ralph’s visit to Emory last week was a bit worrisome. The social worker noticed the same change in his communication that I’d been noticing. He was not exactly monosyllabic but offered much less information than usual. When I explained that he’d been in bed for a week, without his usual dosage of nicotine or caffeine, we agreed that it might be situational blip but that I should watch his lack of energy and engagement. It could be situational, but what worried me was that the temporary setback would set off a permanent slide. I was nervous. Ralph definitely seemed sluggish the next couple of day. I had to prod him to take his pills, to take his shower, to eat his lunch. But he has always been negatively affected by the kind of dreary weather were having and to my relief when the sun finally came out, his energy definitely ticked up.  I still had some niggling doubts because he seemed a bit foggy in the evenings, but then again we were still both a little stuffed up and coughing.

Then two days ago he shocked me by announcing. “I’m looking forward to Christmas with everyone in New Orleans. That should be fun.”

Ralph looking forward to travel? Ralph looking forward to anything? Wow. He was back to his old self, well not his old old self but at least his self of three weeks ago if not a touch more lively. I breathed a sigh of relief.

Of course, being back to his self of three weeks ago meant he was back to cigarettes and beer. And spending more time in his office away from his wife’s prying. And instead of sitting on the cold porch in the late afternoon, he began sitting in his truck where he could run the heat. I nagged him some, but mostly I turned a semi-blind eye. To be honest I didn’t have the energy to fight him.

(Except over the cigarette smell, which I had forgotten how much I hate but that’s another story.)

And last night we had the kind of crisis we’ve avoided for quite a while. He shambled into the house for dinner, stumbling against the wall and just short of incoherent. In other words drunk on lite beer. At least I think he was. I was worried that maybe it was something else, but no, it was beer overindulgence because once he ate he was more or less fine.

If he didn’t have the cognitive impairment, I’d…well he does have it.

So we talked calmly. I was stern and he contrite. He agreed again, to have no more than four beers a day. No beer at all unless I was there to keep count. So no more keeping beer outside the house, whether in the office or the truck. He agreed.

I reminded him this morning. Of course he didn’t remember last night, except his hand hurt, and that was enough to prove my point. Again he agreed. I drove to an appointment. He called to ask where his car keys were. I said I didn’t have them. He was sure I did. I drove home a bit later and found a new 12-case in his truck. He’d used the extra keys in the mudroom. But he was now chastened and suggested I go ahead and take the case of beer out of his car. He came to the house at four as we’d agreed. Everything is calm.

Sort of.  To watch him as carefully as he may need requires limiting myself in ways I frankly don’t want to. I feel a wave of resentment along with the standard guilt that I have been doing an inadequate job. I have already made one big change:

IMG_2441

I’m putting the life list I always make for him while I’m away in service everyday now. And the list itself is longer now, including more daily activities, and also including a check off for beers 1 thru 4.

We’ll see how long this lasts. He got home at 3:30 this afternoon. It’s 5:15 now and he’s on beer #4.

Physical Illness Strikes Memoryland

sick

 

The laryngitis I had a month ago morphed into a hacking cough and a lot of congestion. For the next miserable, rainy week or so I grocery shopped and attended meetings I’d committed to—mostly at night and at least an hour away in Atlanta—then crawled home and let HGTV put me to sleep.

Finally after I went to the doctor who gave me a prescription. But it took another ten days, plus a change in prescription before I started feeling better. Meanwhile I had no choice but to take to my bed. What part burnout might have played is food for another post, but I had to let Ralph to fend for himself.

And he fended fine. He was very concerned. VERY concerned, in a way he never would have been when he was cognitively sound, sound. He worried aloud, What would I do without my Alice to take care of me.

Ever ten minutes he came into the bedroom to ask me if I was okay and if I needed anything. Usually I was trying to sleep actually and wished he would just leave me alone, but his heart was in the right place. He even brought me tea and toast. He ate sandwiches and the chicken soup I had (brilliantly if I say so myself) decided to make the day before I started feeling really bad. For several nights he slept in another room to avoid contagion, which was frankly also a nice respite because I wasn’t wakened during the night by his talking in his sleep.

And then the Saturday before Thanksgiving, as family began to drive up, I started to feel like myself. Hurray.

…We will skip over most of the details of the nine-day Thanksgiving we just completed this morning. Let’s just say that seven adults (all either related or married and all good at bickering), one teenager and a coughing, sneezing two-year-old trapped in a house twenty minutes from restaurants and shopping is not the best plan for holiday cheer….

Which brings us to today, or actually to the day before yesterday when Ralph started sneezing and coughing. Although so many people crowded into the house was difficult for him, Ralph loved being Bop to BabyBop and turned out to be something of a toddler whisperer, able to get BabyBop to eat when no one else could. The problem is that BabyBop is never without his germs and likes to share his food and drink with those he loves, like his Bop.

Or maybe I’m just trying to deflect responsibility since I am probably the one who got Ralph sick.

Because he is now the one in bed. And now I am the one going into the bedroom every hour or so to check if he is okay or needs anything, and he is the one saying LET ME SLEEP. A few minutes ago I told him that now I understood how he felt two weeks ago, and we laughed together at the role reversal.

Actually, he doesn’t have a fever the way I did, isn’t coughing as much as he was a day ago, and isn’t congested. But he is tired and feels as if he has a cold. This is the first time he’s had a physical problem in all the years since his cognitive impairment was diagnosed. And my reaction is different than it would have been pre-diagnosis. I realize he can’t take care of a relatively mild cold himself. I have to be around to make sure he drinks liquids and eats something and takes decongestants in a way. He is like a sick seven year old. Sweet and helpless.

And for the first time I have had to tell my daughter I can’t help her out of a babysitting jam because I can’t leave Ralph.

It’s not a big deal in a way, not leaving my husband alone when he has a cold, but it feels like a harbinger of things to come….

Oh no, I hear Ralph’s truck starting up. I would bet he is heading to the store for cigarettes (which he has not been smoking for obvious reasons). I better go catch him.

When Forgetting The Past Becomes Remembering the Present Wrong

error

“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.

More About Working Out The Equation of an Alzheimer’s Marriage

equation.jpg

 

Ralph and I spent the last few days eating and sleeping in the same house and interacting with the same people and yet our weekends could not have been more different.

Our town faced a crisis this weekend because the same Neo-Nazi organization that marched in Charlottesville, Virginia, decided to hold a rally here. The city government felt obligated to issue a permit under Freedom of Speech laws (but foolishly did not think of charging them to compensate for the cost of such a rally to the town). In response local citizens, including me, organized responses to the rally. Folks gathered on the town square on Friday night to support the local businesses, which would have to be shuttered during the rally, and to help children chalk humanitarian messages on the walkways in the park where the Neo-Nazis would be convening. Saturday there was a peaceful protest against the rally and also a Unity Gathering, an ecumenical coming together of citizens of various faiths, races, and ethnicities.

I attended all of these events. Ralph attended none.

Although I discussed the situation as little as I could, I probably discussed it more than I should have. After all, I was embroiled and it was on all I was thinking about.

On Saturday (and probably even Friday night) Ralph was filled with anxiety. Safety is paramount to him these days. “Be Safe” is his mantra to me every time I leave the house, even if only to drive to the convenience store. And to be honest, there was reason for concern Saturday. Fortunately, the husband of a friend who was also attending the Saturday gatherings stayed with him during the afternoon. And more fortunately, the number of Neo-Nazis who showed up (40 minutes late to their own two-hour rally, by the way) was smaller than expected; the anti-racist protest peaceful; and the Unity gathering was uplifting in the best ways. Ralph enjoyed his quiet day and I ended up enjoying my very active one. By the next morning he’d pretty much forgotten there’d been anything unusual going on.

But that was not the end of the weekend.

Sunday night we were invited to dinner with three couples we see regularly. The get togethers have always fit the same pattern, Ralph always complaining ahead about having to go, and then telling me what a wonderful time he’s had afterward.

Not this time. As soon as we got in the car to head home, Ralph rolled down his window, pulled out a cigarette and announced in no uncertain terms, “I was ready to leave an hour ago.”

And the truth is, so was I. As much as I love and enjoy my friends, I was a tense wreck the whole time because I could sense Ralph’s misery. In the past Ralph has told his own stories and jokes and enjoyed the jokes and stories of the others, but he was much quieter last night. He would laugh when the rest of us laughed at a joke but I could tell he was not sure what was funny. He would be just that little bit too quiet while listening to someone’s story or some casual banter so I knew he wasn’t really following it. There was a new divide I could not avoid notice widening between him and everyone else. I found myself mediating, trying to cover for him much more than I’ve had to in the past. And it was exhausting.

I have read all the literature about keeping people with cognitive impairment as mentally active as possible, but I have slowly become less pushy. And I am facing that groups of more than three are now an overload for Ralph, especially when we are away from home, but maybe even at home.

So no more making him attend events where he is out of his comfort zone. Which doesn’t necessarily mean I will stop attending, does it? That is the equation I need to work out.

RALPH TRAVELS TO BABYLAND WITH MIXED RESULTS

IMG_1222.JPG

 

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.

From Memoryland to Grandbabyland: Part One

IMG_0831.JPG

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.

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.

Alzheimer’s Benefit–Exposing A Goodness Quotient

shutterstock_457376863.jpg

I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves

Taking Stock For Future Reference

In preparation for Ralph taking part in testing of the new Merck anti-plague drug, our nurse at the Emory Brain Center  asked me to make a list for the nurse to show Ralph’s current baseline. Of course, I put it off (just as I often put off writing here because it means facing stuff I may not feel like facing). But now  the list is done and it seems worth sharing.

WHAT RALPH CONTINUES TO DO:

Make small repairs around the house when asked; Pick vegetables and do light farmwork when asked; Take his meds on his own from his filled weekly pillbox; Make his own cold breakfast and lunch; Make coffee as needed; Use the microwave; Buy beer at the convenience store; Feed the dogs daily; Drive around the farm in his truck to “walk” the dogs; Dress, bathe, shave etc on his own; Talk on the phone at length to his sister and oldest son; Attend his art class; Walk occasionally on a farm path circuit; Watch nightly news and Jeopardy over dinner; Listen to NPR on the radio; Read quality full length books of fiction and non-fiction; Use his credit card (as long as no tips are involved); Pay cash for small purchases; Cut his own hair ; Turn on the gas grill and change the gas canister when needed; Interact socially with people who visit or whom we visit; Fish from a dock; Clean fish he catches; Share stories from his childhood; Offer witty one-liners out of the blue; Analyze a situation/problem presented to him and show insight even though he forgets his analysis (and the problem) shortly afterwards

WHAT RALPH CAN’T DO ANYMORE:

Pay attention to business or financial matters—important since his professional life was all about real estate investing and managing; Use the stove; Use the grill although he does turn it on when I ask; Drive on his own except those places noted above or under duress and if I am there to give him directions; Use his boat; Hunt ; Go to movies—says he finds them “boring”; Watch narrative television dramas or comedies except on rare occasions; Listen to music on his own; Keep up with or show interest in family and friend activities; Remember details of relationship history with friends

 

WHAT RALPH MAY OR MAY NOT DO:

He may still be able to play guitar, but shows no interest; He says he can drive tractor (and was told it would be ok by Stephanie) but avoids doing so.; While he goes to art class, his output has greatly diminished; he spends most of his “painting” time sitting in his office smoking and listening to talk radio; He claims to take walks but I have not witnessed him walking

 

RALPH’S TEMPERAMENT CHANGES:

Extremely passive—used to be extremely assertive; Never gets angry—used to be hot tempered; Without curiosity—used to be extremely curious and factually knowledgeable ; Emotionally totally focused on his dogs; Less outgoing but more jolly most of the time.  

I kind of love having this information down in black and white and red and blue and green.  In a year or two or five, I will look back at what I recorded–whether with relief that the Merck pill has worked to keep Ralph at his current activity level or in bittersweet nostalgia for this time when the Can Dos on Ralph’s list are several lines  longer than the Can’t Dos and Maybes list combined. May it stay this way for as long as possible.