Our Second Marriage Was in a Meadow

I arrive early and place chairs in a circle thinking there will be at least one story of suffering and heartbreak for each chair. I’m sitting in for the regular facilitator of the memory care support group today. This has its perks. I don’t have to talk. Well, not about me.

I just have to make sure everyone gets a turn. They want to bring us the latest chapter. They need to tell it. The others want to hear it—to be of comfort and service. Everyone loves this group. They love each other as we go around.

Each story is different— told from the perspective of a son or daughter, husband or wife, sister or brother. Each story has an arc defined by the unique place their loved one occupies on their descent into land of dementia or Parkinson’s. Folks who have recently or long since lost their loved one often still come to hear the stories, tell theirs and be of help. There are usually a few stories about little victories and hope.

When I facilitate I try to find a theme as the meeting progresses. This time we were blessed with two:

1. “There is a meadow somewhere.” by this the speaker meant there is a place of some solace, just some, in which you may get to walk. It’s a place you might get to after traveling the very tortuous path of adjustment to the love of your life being overwhelmed by the eerie world of his or her dementia or Parkinson’s. Then, after much struggling comes the shock of getting moved into memory care.

The speaker used it to reassure a member of the group that the suffering she and her husband were experiencing this week would subside. They might find themselves in a place of some relief where one can gather wits and emotional resources, breathe and enjoy life and each other. If only for awhile.

2. “Having a spouse with dementia is like having a second marriage to the same person.” Only in this go-round, one partner finds the other changed so drastically they are hardly recognizable, except often for their darker faults and irritating habits. (Those are given full and free play. As the old joke goes, “He’s got Irish Alzheimers (or Indian, or pick the group you wish to disparage) “…they forget everything but their grudges.”

In the second marriage there is no honeymoon, but hopefully there will be a few meadows the couple can hang out in. As we walk the long road down the valley of death hoping for a few meadows, we try to be true to our vows even though our efforts are seldom appreciated. Indeed, we are often punished for being there in service. We are often a convenient scapegoat and shapeshifter before them—now Satan now Saint.

I cannot share the details and the stories shared to illustrate these ideas, except for my own experience. The support group is a sanctuary. I do want to share the themes because they may be of use as we explore other quandaries of the caregiver experience.

A dilemma shared often in our support group is “I feel so guilty for having these thoughts, but sometimes I think it would be better for everyone, if….I can hardly say it…but you know if she would.…” Nods of recognition, tears and words of consolation follow.

A companion on this road to “unimaginable lands” sent me an article from alzheimersdisease.net entitled “Navigating Caregiver Guilt When Wishing for an End to Suffering” by Lauren Dykovitz. Here’s an excerpt.

I knew I wasn’t wishing for my mom’s death because I wanted her gone, but because I wanted her suffering to end. I loved her so much that I was willing to let her go so that she wouldn’t have to suffer any longer. Selfishly, I also wanted my own suffering to end….It isn’t selfish. It is actually selfless. You love your loved one so much that you are willing to let them go if it means they will no longer have to suffer from this horrific disease.

This compassionate wrangling of words may bring solace to caregivers and family members who find themselves thinking the unthinkable, the unspeakable, the unforgivable. It might offer light to the dark side wishes for this ordeal of the “Long Goodbye” to be over.

The end of suffering is the central focus of many religions. Buddhists seek to end suffering through acceptance and the letting go of craving and attachment. Christians see the end of suffering in the Second Coming, meanwhile, suffer and endure in the light and Grace of the Divine. Big asks, tough going.

I have been at the side of a fellow caregiver when her loved one passed. I have joined in the parade of honor as family and staff line up to say good bye to the person in the body bag being wheeled out of memory care. I have felt a sadness and a great sense of relief—filled with the dark joy of knowing his/her suffering is over, and mourning can begin for the family. And of course I wonder after, but dare not covet my turn.

Journal Entry, April 26, 2025

Surviving spouses whose spouses are still alive ask, “Wouldn’t she be better off dead? Wouldn’t I grieve less as widower? Dementia is the “widow maker”—that heavy branch that hangs up in the tree, broken and ready to fall, but for the tangle of branches that cradle it. No-one knows when it might fall. So we hire the arborist to bring it gentle and safely to the ground —well, as gentle and safe as a chain saw, ropes and pulleys can make it.

We have no arborists in memory care, and everyone is long past the point at which a motivated sufferer with enough cognition to maneuver around the legal obstacles could have Death with Dignity.

We made our choices at every fork in the road and here we are, staring at each other and asking ourselves and each other unanswerable questions. We nod our heads as if to empty the dark thoughts from the source. We forgive ourselves (hopefully) and each other (definitely) and go on talking of medications, doctors, etc, but, mostly how our our loved ones and we suffered or triumphed since we last met.

Then the conversation often turns to appreciating what’s left—the salve of counting blessings and recounting those moments when things are calm and we get to experience glimpses of the life before, and we may even get a kind word or a kiss.

This is where the Meadow theme helps untangle the words and release the tortured thoughts. There is some kind of meadow on each plateau of the descent down into the valley. Often it ain’t much, but it’s the place where we meet our people and it’s where, for the married ones, we renew our vows for this second marriage.

As of this writing Woesha and I are wandering—much more slowly and haltingly as when we first arrived in memory care—but we are wandering in a comparatively calm and relatively comfortable meadow. (See previous posts on reduction of her anti-psychotics). I am so very grateful for her serene and often sunny disposition. My comings and goings are noted with appreciation and little anxiety. The meadow has flowers because we often walk slowly through the complex and outside to the greenhouse where there are so many beautiful pots of flowers, which she hardly notices, but hey, she looks beautiful among them.

Caring for her and being present with her and others in the neighborhood is an act of devotion and of love, and it can be rewarding. It is emotionally draining, often boring, sometimes entertaining, and always god awful sad. I trudge up the stairs, slide my key over the pad with a mix of curiosity and dread. Who might be trying to escape, who is in a grumpy mood, who is sick, who has fallen, who has been put on hospice? I walk into the neighborhood, feel instantly tired until I see her face and she gives me that funny two handed wave and immediately asks me a question which makes little sense and I answer as if it does.

In this 2nd marriage it is up to me to meter and guess what she gets from our relationship. It’s up to me to determine what I make of our togetherness—to read the landscape behind those beautiful blue eyes. She clearly loves to be with me, but my presence often wears thin. She wanders her world—sitting in her chair staring into space or getting up and going into someone else’s room where she sits and watches them as they sleep.

I keep asking myself if I can, should, ought to, deserve to, devote more of my time to myself and others in my world outside these walls. This is a tough one to ponder let alone measure or apply some formula. What criteria, what notions of work/life balance? What were our vows anyway?

They are in the wedding album. My 19 year old self wrote them. (Yes, 19. She had just turned 20. What did we know?) It is a script entitled Marriage in the Round, for Tom and Woesha, June 1967. We were in a circle on Pigeon Point Beach north of Santa Cruz.

The script is pretty embarrassing—all about coming from star dust and humans creating marriage bonds for the sake of harmony with nature, family, and joy of the parents in seeing their child “finding the one and only mate of his/her heart’s desiring.” No where is there the standard clauses about love, honor, obey, in sickness and in health…” I mean check it out, man. It was 1967, the Summer of Love. Everything was groovy. Institutions like marriage were in question.

The vows are even more embarrassing. “Will you each give all of yourself so that your partner may receive you and return your love in a relationship that is neither giving nor receiving, but a total sharing of each other in the One Life harmony…Do you enter into this union with pure heart and clear vision of the marriage bond with all its various strengths and weaknesses and will you seek a balance through interaction of your energies and the energies around you….?”

We said “Okay, whatever….” We didn’t say that. We just said “We Will”. It was in the script. We we were so shell shocked—for it was a hastily assembled shot gun affair!

It was a beautiful day and a nice ceremony and we just wanted everyone to leave us alone so we could camp at the beach. We got stoned, burned the rice, (which I took as a bad omen), watched the sunset and crawled in the tent. The sand was lumpy. That was the honeymoon. The next day, we went back to town, packed up and drove to Oregon so I could start work on Monday. That’s kind of how it went from there on.

It’s been sixty years. It’s been hard traveling, good traveling, and a few side trips in which we made noble, but clumsy, attempts to reinvent ourselves and our relationship. We moved and settled dozens of time and ultimately, we settled in our relationship. We settled for being together despite the differences we could not resolve. Two wonderful children and seven grandchildren can make strong bonds. Then one of us went away.

Can We Find Love in What Is Left?

There’s a love that sings

the birds to sleep

wakes them up

fills their songs

It shakes the trees

scatters the leaves

it hums and rings

a buzzing kind of harmony

Like the chimes on the back porch

a pentatonic melody

of love and loyalty

loss and discovery

Our arms around each other

like baby raccoons

like a bundle of kittens

in a nest of old shirts

Like twins hugging after a long time gone

that’s how we are together

that’s how we are apart

even then I feel her next to me

That’s how the world can be

oh my, what we had to lose

to be this close

to sing these blues

Would we choose if we had a choice?

to give it all up for this love

to feel the atoms dance

around the edges of ourselves

Do we have to be sad to feel it

to find the joy without boundaries

to touch and feel the universe

pulse within and between us

Tom Hampson

December 2023

I have to say this poem rings a little like the Wedding Script. Damn. Even more embarrassing after all these years. Still, it’s heartening to acknowledge we still have that buzz between us, even if most everything else is Duck Soup.

So this is the meadow in which we are camped for awhile. There are flowers, and bugs, and we worry about running out of freeze dried food and toilet paper. Soon, we will walk on down the valley and at the next meadow we will pitch camp and figure out what the marriage looks like in this new place. The marriage will again break in two and we will be another form of together and apart.

There are no guidebooks for this, no clear path—even for people with a solid foundation in a particular faith. There is doubt, guilt, anxiety, and there are always questions—philosophical and non-sensical, unending and repeating. There are precious moments of understanding and love, and, of course, lots of suffering. Joy is where we find it.

“Joy is the reward, really, of seeking to give joy to others. When you show compassion, when you show caring, when you show love to others, do things for others, in a wonderful way you have a deep joy that you can get in no other way. …when you are caring, compassionate, more concerned about the welfare of others than about your own, wonderfully, wonderfully, you suddenly feel a warm glow in your heart, because you have, in fact, wiped the tears from the eyes of another.

― Dalai Lama, The Book of Joy: Lasting Happiness in a Changing World

This is the beauty of the support group and the feelings of love and compassion within the circle are palpable. It is our little meadow of the moment.

When we walk from the room, we still face the challenge of making choices that will hopefully enrich our lives in and outside of caregiving. We owe it to our selves and our loved ones to try to find joy in those parallel worlds.

Doctor, Doctor Come Here Quick

Doctor, doctor, come here quick

I got the blues real bad and my poor wife is sick

When you go in for your Annual Wellness Visit

The doctor gives you three words

free from Medicare

It’s like a poetry prompt. I got:

chair

radio

beach

She warns you she will be asking you

For these words back after awhile

But first, she has a few questions

So, while I’m sitting in my chair on the beach

Listening to the radio

She’s off poking around in my bathroom

Looking in the medicine cabinet

In the kitchen, she’s looking in the refrigerator

Checking how much beer is left

She’s looking all around the house for stuff

That might trip me up.

When she gets back she takes

My pulse and blood pressure and says,

“Okay, what about those three words I gave you?”

I proudly recite my beach haiku

And while I know you don’t get a grade

I’m guessing at least an A- is in order

My wife, also a poet, took her turn

But, somehow she missed the prompt

And when asked to give the words back

She told the doctor about her father

How he made a terrible mistake in the war

And how he had a stroke and her mom

Had a heart attack.

They scheduled a follow up appointment

In which she was asked to draw a clock

and put the hands where they belonged when it is 2:45.

Upon which she became confused

Because the appointment had been for 10:30

And certainly it could not be that late already.

After blood tests and another session of clock making

a diagnosis came in her MyChart:

“Cognitive impairment without behavioral problems.”

Not exactly what we thought

Because she had been acting, at times, very problematically

But, let’s keep that on the down low for now

They don’t need to know everything, right?

Well, not right now. We’ve apparently got a lot

More clock watching ahead of us.

Hands of time spinning off into spaces

We can hardly imagine,

In our twilight years, when we are trying to sort getting old from going south, we crave answers. We want certainty, whether it’s bad news or good. If something is really trending badly, we need an official diagnosis.

With early stage dementia we never get what we need. We want so much for the doctors to know and to tell us and to tell us what to do. Then we find out they don’t really know either. Not really. Hundreds of causes for missing cues and hundreds of kinds of dementia, and even when we call it Alzheimers, or Lewy Body, or Temporal Lobe, everyone is different. Nothing is straight forward, so you run around in circles and the circles get more wobbly every time someone asks you to draw a clock.

We were very lucky because Woesha’s primary care doctor specializes in elder care and is incredible, but she, like us, needed a diagnosis she could not give. All she could tell us was what it most likely isn’t. So enter the neurologist. We were very unlucky then. In our first appointment, a telemedicine zoom call with the neurologist and our daughter on the call, he asked Woesha a lot of really dumb questions (they seemed dumb and insensitive to us) and then he asked her to draw a clock. He was so ill suited to describing the task, she got frustrated and slammed the pencil and paper down on the table. I cut the interview short after we agreed to get an MRI. My daughter told her mom, “You were great. You told him to go draw his own fucking clock.” She said, “Nooo, I didn’t.” Chandra, laughing, said, “Yeah, you pretty much did.” We all laughed. Here’s what happened next time we talked to him.

Freewrite 12-14-21 The Many Shades of the Winter of Our Discontent

The first snow patches of the season grace the lower yard and laurel. The deer crossed the yard this morning making a bee line for the neighbor’s yard where there are still apples on the ground.

“Come look at the deer,” I say. She comes out and counts the ones she can see.

We returned from Seattle yesterday in time for our 4:00 telemedicine appointment with Dr. What’s-His-Name, the neurologist. His face round and stubbled head filled the screen, remnants of cold sores on his lips, eyes darting from frame to frame on his screen. We sit in the upper corner of our screen, me in the foreground, patient Woesha behind and to the left.

When he updated the medication list he asked about the Lysine. I said we just use it for cold sores and thought I might suggest he try it. That would have breeched etiquette and the “fourth wall” of this tele-drama, for he is the primary actor and we are the audience, seemingly without agency, but for our responses to his questions.

He opened with

“Mrs Hampson do you have memory problems?”

“No, I’m getting along just fine.”

“Do you drive?”

“Not much, but if I have to go to the store or something, I will.”

“Mr. Hampson does Woesha drive?”

“No. She doesn’t.” I don’t look at her. She’s quiet.

“Mr. Hampson, do you feel her memory has gotten worse?” I’m trapped. I cannot lie. I say yes it has. I’m staring at the screen, feeling like a snitch. Waiting for darts from my left.

“Mrs. Hampson, can you do the basic activities of daily living like dressing, going to the bathroom, bathing without assistance.”

“Yes.”

“Do you go shopping at the store and are able to find things?”

“Yes.”

“She’s my best assistant,” I say, trying to be light and her ally.( Honestly, she gets lost in the grocery store and forgets in seconds the apples she was asked to get and asks me again, and then again when I get back from gathering lettuce. She no longer can figure out the order of dressing or which items of clothing are appropriate. She waits for me to lay them out and asks over and over which goes where.)

I don’t add these details. I’m not going to bust her. What would it matter? I’m not going to continue to contradict her reality. That’s against the rules of dementia care and it never ends well and would serve no purpose in this drama. In her play, she has no memory problems. In his play, he’s probing to confirm his reality, The questions continue.

“No,” she scoffs, “I do not wear diapers.” Thank god, she’s right about that. But, I know it’s coming in a future episode.

He shows us grayscale pictures of her brain, her eyeballs dark round forms at top of the cauliflower. “Wow, this is cool, I say trying to make this fun.”

“This is the hippocampus, the part of your brain that controls many memory functions. (And I suppose, the place hippos go to university? No, I didn’t say that.) It shows signs of shrinkage which is consistent with a diagnosis of Alzheimers disease.”

The audience is quiet. A new slide. “Here is another level and we see parietal nodes, the area on the sides shows shrinkage where it shouldn’t be dark. This also is consistent with Alzheimers disease. The audience is unmoved. Tough crowd.

“The good news is that there are no signs of tumors or strokes or vascular disease or cholesterol.” Quiet. Was he expecting applause? Not even sighs of relief.

“The blood tests show no problems with Vitamin B or thyroid issues. The neurological exams with Dr. Sherman—(Woesha liked Dr. Sherman and she did not throw the clock at her. She was friendly, empathetic, patient, thorough.)—the report I think you saw, indicates significant cognitive problems, especially of the amnestic type which is where things can not be recalled, even with cues; problems in fluency, such as the naming of things. This confirms the likelihood of an Alzheimers diagnosis. The good news, since you can do all the basic things of daily living, the Alzheimers is in the mild range.”

The audience of two absorbs the findings. At least one of them is thinking. ‘She is hardly in the mild range.’ In this play the doctor takes her word and my silence for agreement. He asked her if she would be willing to take a memory test in three months. She said she would give it a try. He thanked her for being willing to do that. That’s going to be fun. I don’t think we’ll do that. It won’t matter except for charting progression which will become painfully clear as the months pass. The chart can go to hell.

We got the information requested. Information that was inferred years ago, but at our discretion, not confirmed by tests. We needed the diagnosis for insurance and for memory care eligibility.

I could write another follow up note to say—no assuredly she doesn’t drive, she needs assistance dressing though zippers and buttons are still in her control, She calls all things that hold water or juice ‘mugs’ and knows where nothing goes. She only takes a shower if I catch her on a good day and I have to take a shower with her to be sure all gets washed.

For some reason the doctor did not mention the Capgras Syndrome. Maybe he has not read of the work of Dr. Caprass, the French neurologist. In this syndrome, “Tom” (the other me) did not go with us to Seattle. He never does, but the last couple trips he has not been expected to show up as in previous trips. Last night he was expected to come home and she was clearing the bed in the guest room for me. I told her I’d just as soon sleep with her. That was fine with her. I told her I loved her and wanted to be with her. That was also fine with her, but she wasn’t like, enthusiastic. She’s a master of dead pan. Even Dr. What’s His Name knows that by now. But, why bring all that up with her sitting there panning dead?

After the doctor left the screen I asked her what she thought. “Well, I wasn’t too sure at first, but after awhile it was okay.” I don’t know if any of the conversation affected her. In the late afternoon, (her sundowning time,) after our care provider Jen left, Woesha was not comfortable staying at the house and only a dinner out would distract her.

Just before turning out the light I like to gaze into her eyes and smile. She likes that too when she’s not feeling estranged. Last night she wondered out loud if she was still married to Tom. I said I didn’t know. We cuddled, kissed, and she said she wanted to sleep now.

On some level, in my reality, we are making progress. We have a diagnosis. In the reality we seem to share, I can’t say if this is good news or bad news. In the reality we seem to share, this is the news—the snow lies in patches on the ground, the deer cross the yard in search of apples, we kiss before falling asleep.

xxx

After almost five years, three and a half years in memory care, and maybe a hundred support group meetings, I have seen so many families negotiate their relationships with doctors. More times than not, it is a struggle. One family I know could not get the family physician to recognize the severity of the dementia because they were old friends and the dementia sufferer was so good at chit chat. In that case the doctor was in denial. Some doc’s worry too much about side effects of drugs without considering the side effects of the dementia on the caregivers. Anecdotally, some families including us, were having good luck with high CBD/low THC gummies. When some of the families ran it by their doc’s the doc’s could not get past their bias against cannabis and “unscientific” evidence. to try it. Some doc’s fall back on known psychotropics to deal with behavioral issues even though there are a host of new anti-psychotic drugs on the market.

So many dementia sufferers have underlying conditions which make solving for one variable, like behavioral issues, very complicated. It requires a lot of experimentation for which the medical system and the family is ill prepared to do. It’s often a fine line between experimentation for the benefit of patient and Hippocrates’ “Do No Harm”.

The fundamental thing is: everybody needs a diagnosis and a baseline from which we can gauge progression, make legal and financial arrangements and try, as best we can, to anticipate needs of the dementia sufferer and the caregivers. It is never clearcut and it will change constantly and at unpredictable rates.

The hardest situations are when the sufferer is in denial.. The doctor can play an important role in this process—as ally of the family and flak catcher for difficult decisions like restricting driving and making financial decisions.

The worst case scenarios are when, due to the disease, the sufferer is suspicious, paranoid, delusional, angry, combative, and even violent.. The sufferer may suspect the doctors of being incompetent, or worse, in on the plot. The family is in a terrible place. There are few options and most families must endure until the disease progresses. By then, much damage has been done.

In almost all cases the doctor can seldom come quick enough, and when she gets there, she finds everyone singing the blues.

Prologue

Remember, a few posts back, when I said that a memory care would be a wonderful setting for a sitcom? Well, I did. I think. Anyway, a lot of people in my caregiver community think it’s a good idea. Caregivers fall prey to gallows humor. It’s laugh or cry and we do enough of the latter. We agree though, it would be impossible to pull off without appearing to make fun of the disabled.

People are super sensitive about this stuff. When I shared a draft of my article about playing music in memory care with the people at Teepa Snow’s outfit, one person said I shouldn’t use “zombies” or “demented” as descriptors. Fine, I get it. I substituted more clinical terms. Dementia sufferers. Bleh. “bleh” is a clinical term for “blah, blah, blah”. So for the sitcom one would have to be really careful. That would kill it. It’s a ridiculous idea. I won’t be pitching any television producer. As you will see, I spend too much time dealing with rejection issues as it is.

But, just in case, here’s a few scenes from Season 1, Episode like maybe 4 or 5, of Bring Me a Bouquet of Forget Me Nots. Our heroine has been in memory care three and a half months. She’s developing some troubling coping strategies.

Scenes from Memory Care

Free Write 2-3-2023 The Affairs of the Heart

Get this. I think Woesha is having an affair. I’m thinking about hiring a private detective. Wait a minute. That’s stupid. I can just ask the staff at memory care. They may not want to tell me. I may have to torture them. No, wait. I’ll bribe them, they get paid shit for wages. I’d have to pay a private detective so why shouldn’t they have the money? Wait, they are not allowed to get tips, but will they give them? I’ll find out. Here’s what happened.

I get a call from Woesha’s room. It really wasn’t from Woesha. She had apparently knocked the handset of the cradle of the phone and somehow hit my call button that dials me. I’m number 1 of course.

The label on the button says “Tom” and has a crudely drawn heart on it. There are five other buttons with other names on them. She reads them to me all the time, but she can’t read half of them because of my bad job of labeling. She often calls me late at night and tries tonread the labels on the phone.

“Then the next one is C…H…A…N..O…R…A. I don’t know what this says.”

“It’s Chandra,” I say for the umpteenth time. “That’s a ‘D’ not an ‘O’ It’s my bad handwriting.”

“D..H..A..N” she reads. “No, it’s a “C” Oh, never mind. It doesn’t matter.” she continues to read the rest of the names.

Anyway…so the phone rings. It’s late evening around memory care bedtime. All I’m hearing is a bunch of rustling and voices in the distance. It is Woesha and her new friend Keith. They are trying to figure out how to dismantle something. I’m guessing it’s the phone. Call me suspicious, but my instincts tell me they are trying to unplug the phone from the wall so Woesha can wrap the cord around it and take it with her.

I’m guessing Woesha and Keith are going to take it to Keith’s room. What they are going to do with the phone is anybody’s guess. But, I’m guessing they are going to sleep together no matter what they do with the phone,

That’s a lot of supposition, you say. Well, I say, her phone disappears all the time and is brought back by staff all wrapped up. They might find it in Susan’s room, or Dorothy’s room, where, it has also been reported, she has spent the night. Lots of times,

So from that I concluded, as part of her descent into dementia, she’s become a lesbian. I’m told Susan woke up early one morning and freaked out when she realized someone was sleeping in her bed. She had forgotten she had asked Woesha to bunk up. So now, it sounds like it’s Keith.

Keith is a quiet and friendly man, not very verbal and is always wandering around the neighborhood pretending he’s lost. Actually, to be fair, he doesn’t ever really know where he’s at, and spends a good deal of time hovering around the exit door in his cab driver hat and his suspenders.

Keith used to be a teacher which may be what attracts Woesha to Keith since she was also a teacher. Except, there’s no way Woesha knows he used to be a teacher. I mean she doesn’t even know his name for chrissakes. He doesn’t know hers either. In fact he calls her by his wife’s name which really irks his wife when she is visiting and Woesha comes around.

Anyway, they can’t figure out the phone, both taking turns trying to figure out how to get the thing unplugged. Eventually, the phone disconnects and I’m left staring at my phone saying, “Well, whattaya think about that?

I’d keep writing on this free write, but I’m late for my morning visit. I gotta go see my Jezebel.

Memory care romances are very common. “Romance” is a stretch. I’m no expert on these matters. The Alzheimer’s Association’s literature would have better information about frequency and the nature of such behaviors. In my experience it’s mostly about holding hands—literally and metaphorically.

Moving into memory care is incredibly traumatic. One day you are home—a place that has become, over the years, increasingly foreign and mysterious and frustrating, but it may still be home to you. The next day you are installed in a different world with a lot of strangers speaking a language that seems familiar, but is somehow different. There are smiling people in scrubs reaching out their hands to you. You are scared and alone and confused, most likely angry. You take their hands. Strange things happen after that, for everybody.

When a spouse does not visit for “awhile”—an hour, an afternoon, a week—it is very common for a dementia person to imagine is their spouse is having an affair. It’s in the air. There are no boundaries to the imagination.

Free Write 2-13-2023 The Boundaries

I was just starting the bath water when the phone rang. It was Teddy, one of the caregivers. “Sorry to bother you Tom. Woesha’s in Keith’s room and she wants to sleep there. We’ve tried to convince her to sleep in her own room, but she refuses.”

I knew it. No need for a private eye now. I swallowed whatever you call that stuff that wells up in your throat when you are jealous and crazed and half naked. I tried to be helpful.

“Okay, Teddy. You want my help? You couldn’t, you know, redirect her?”

“No, sorry. She’s getting pretty testy. So is Keith.”

“Shit…..Okay, well…wait a second…I’ve got to….hmmm…okay, hey listen, why don’t you have her go to her room and I’ll call her there.” Then I realize she may have packed up her phone. “Wait, why don’t you tell her to come talk to me there at the desk.”

While I’m waiting to pry her away from the hidden charms of quiet Keith, I’m thinking—always the advocate for the rights of women—is there a rule against co-ed sleeping in the Neighborhood? They don’t object to Woesha sleeping with Susan or Dorothy. Isn’t this a double standard? And just because she’s married to me, doesn’t mean she wouldn’t stray once in awhile, does it? Woesha? Never.

But, if Keith thinks he’s going to get to first or even second base with Woesha, he’s crazy. Oops, I mean, he’s got dementia. Wait, he does have dementia. Anyway, I would be very surprised if he got to any base at all. Does that mean my fears are baseless? How can I joke at a time like this? But Woesha? She’s terribly in love with me as I am with her, and even I can’t get to second base…and if he does…then I might have good reason to feel cuckolded…wait.. what the hell am I thinking,

“Hello?”

“Hi sweetheart. How ya doin’?”

“Oh I’m so glad to hear your voice.”

“I’m glad to hear yours. What’s happening?”

“Oh there’s a bunch of people trying to tell me what to do. Like I’m not an adult and I can’t make my own decisions. That’s bullshit.”

“Well, yes it sounds like it. So you wanted to seep in Keith’s room?”

“I can’t remember what I wanted to do.”

She could be covering, she’s good at that. Call me Polyanna, but I believe her.

“Let me talk to Teddy and I’ll tell him to go with you to your room where we can talk. I want to be sure your phone’s hooked up.” She agrees.

I knew it would take awhile for all that to happen, if it happened at all, so I finished running the bath, got in and waited in water that was nowhere near hot enough to soothe away the troubles. She didn’t call so I called her and miraculously she answered. We had our usual good night conversation. She read the numbers and letters on the phone and then got to

“When am I going to see you.”

“Tomorrow morning.”

“Oh goody, I can’t wait. Do you know where I am.”

“I do.”

“Oh good, I can’t wait to see you.”

“I can’t wait to see you.”

“Do you know where I am?”

“Yes, I do, I come there every day.”

“Oh good. Well, I’m going to be here until I hang up and then I’m going to go to my room.”

I wanted to say, ‘You mean Keith’s room, don’t you?’ Bad Tom. Who’s got a double standard now? Instead, I made my usual feeble attempt to convince her she is, in fact, in her room by getting her to look at the pictures of our children on the wall, blady, blady, blah, blah.” Then we said “I love you” and “I love you too” four or five times and hung up. She, called me one more time before I went to sleep, and I think she’s going to stay put, but I wouldn’t count on it.

Next day, I spoke with Melanie, the Neighborhoods Manager, about the rules for co-ed sleeping. Turns out all sleeping together co-ed or otherwise is discouraged, but letting Woesha sleep with Susan or Dorothy is allowed since it encourages less wandering and more sleeping. If two married people decide to sleep together, this requires permission of the families of both. This gets complicated. So now I think, I’m going to have to talk to Keith’s wife? What? That will be interesting, Melanie said they would do that. Whew.

Melanie says “It’s probably just about sleeping with someone for many years and then all of sudden not having your sleeping partner. It’s probably not a sexual thing.”

I recounted my thoughts about Woesha and first and second base—a concept with which she was clearly familiar as evidenced by her giggling. She asked me what I thought about the whole deal and I explained that under other circumstances I would be upset, but in this case, it’s just another thing to get used to in this weird alternative universe.

“I want her to have the best life she can have.”

Don’t I? Of course I do. I can’t get mad at her or Keith. Can I? He’s in the same boat as Woesha. The slow-going cruise ship sailing around and around and around the island of memory care in the sea of Dementia.. We can’t fathom let alone judge the behavior of people with dementia. Nor can we judge ourselves too harshly for reacting with emotions that still color our world.

I have to admit I’ve been a little less patient with Keith lately as he stammers to us about how he can’t find his parents and doesn’t know what’s going on around here, and he’s going on and on about it, and I want to accuse him of purposely talking non-sense so as not to raise my suspicions about any intentions he might have with respect to my wife. I also have to admit I’ve been a little testy with Woesha when the topic of her being sleepy comes up, or when I find Keith’s pants hanging in the closet or Keith’s wedding ring on Woesha’s finger which kept falling off.

I suggested we take the ring back to Keith before his wife finds out, She agreed. We went to his room and I had him try it on and said, “Yep, it fits. Yay, and now we’re married!” He looked confused. I put my hand on his shoulder, “Just kidding.” He smiled. Was that mean? Am I making fun of the disabled? Jeez. I have to keep reminding myself this is a sit-com.

Besides, like any thinking cuckolded man (if that isn’t an oxymoronic notion) I find reasons to blame myself. My guilt, my betrayal—for putting her in that place. So who wouldn’t want to facilitate whatever arrangements in memory care will make her happier? But, Keith? He’s old and stove up, AND he has dementia! Oh yeah, remember, the boat. But, Keith? Who could be safer? He’s very sweet and he follows Woesha around like an old golden retriever and will do what ever she tells him to do. I like to look at his pictures of mountains and the fish he’s caught when I go into his room to look for lost items, like Woesha. And I always win the face off when I reach out my hand and say “What do you say we go to your room” I always turn to Keith and say something nice like, “We’’ll see you later, Keith. Maybe at dinner.” He always has a hang dog look, and I try not to gloat. Jealousy, like love, honors no boundaries.

It’s just another turn in this rough and rocky road. Something new to make me miserable and something else to negotiate with her caregivers and my conscience. And besides, this plot line will likely not last the season. The through lines will be Woesha and me dealing with the frustration, bewilderment, and anger at what the damn disease does to us.

She still loves me and wants me with her as I love and want to be with her. I must believe love, forgiveness, and gratitude are my allies, indeed, my only hope. Love, forgiveness, and gratitude know no boundaries either.

Epilogue

Here’s the tough part about making this a sit-com. I was informed by staff that Keith’s family decided the best way to discourage the relationship was to replace Keith’s double bed with a twin. I was told the couple continued to try to make it work, but as in all things memory care, the relationship didn’t last.

The writer might want to make the next scene a cause and effect thing for the purposes of dramatization. The basic story line is that Keith fell out of his bed one night and fractured his arm. It is very common for falls or other surgical trauma to become the inciting incident for the final demise of a dementia sufferer. Keith deteriorated quickly and passed away in a few months. He was very sweet guy, a very accomplished man and dearly loved by his family. We will miss him.

For Woesha, like the other residents, Keith walked around the corner and out of sight, out of mind. Nothing but not even a memory.

Anniversary

You can say that birthdays don’t mean much any more

But, you better not say it about your anniversary

So you get dressed up and take her out for dinner

Sitting at the table under the umbrella on Alberta Street

All of Portlandia walking by

And it is clear she doesn’t really know you

That you are her husband of fifty four years, today

It’s small consolation when she says

“I hope Tom will come by to join us for dinner.”

You smile and order more tapas and that earthy Basque cider

That makes you think of when you were together in Pamplona

Sitting on the square like Hemingway and his third wife Martha

Talking politics with the locals and sipping the house wine.

Tom Hampson, June 24, 2021

	That was nearly five anniversaries ago. Now, there’s nothing special about any of the many special occasions we might celebrate. For Woesha they only seem special if they are special to others and she finds herself among them. Of course, we are not even sure about that, but she does love the company.

Late stage dementia sufferers are usually otherwise occupied. Rather than open the card from her sister, or admire the flowers her son and daughter-in-law brought her, Woesha might need to move pillows from the bed to the crowded closet in the bathroom.

On Easter this year, some of the staff and a few of the residents at the encouragement of staff, donned bunny ears. Residents were wondering why. The Activity Director explains they are going to have an easter egg hunt. I imagine no one will find what they are looking for, but they might stumble on some colored eggs.

Activities staff always decorate the place—often with the help of residents. They cut out snowflakes, color eggs, make valentines, four leaf clovers—how lucky are we? Don’t be grumpy. Go along. They have fun. They want to please you. Knock yourself out. But, know it is for show, the one you are putting on. Don’t expect them to understand or glow with gratitude or reminisce. Although they might smile or nod or answer your question about who hops around the yard with a basket full of colored eggs, it’s only a matter of time until they won’t. So what are you going to do?

Freewrite 4-5-2021 Demons Came on Easter

It was actually the morning after Easter. The gremlins came to her early in the day after we dropped the kids at the airport. It was like the kids didn’t really come. Maybe they did come, but, all they left were spaces in the air. Spaces haunted with gremlins—loneliness, abandonment, confusion. And me. Who? Was this Halloween not Easter?

As soon as we got in the door. “Where did everybody go? Why did they leave without telling me? Where’s Tom?”

She went to the bedroom to resume her packing to go find home. Over the next few hours she lost me maybe five times, found me with a burst of recognition, getting my hopes up, then cast me out of the scene. I became a ghost who was somehow responsible for the kids appearances and leavings.

Exhausted from the weekend, I lost it. I called her cell from the couch and told her I’d shown up five times and each time she refused to recognize me and I’m tired of it. I’m setting boundaries here. Which of course is ridiculous, since she lives in a world where boundaries are like snakes. I said maybe I wouldn’t come again. Who’s the snake now?

She broke down, giant sobs from the closed bedroom door. I rose up and rattled the front door—pretended to come home for the sixth time. “Hello, anybody home?” She came out and hugged me desperately, and it seemed I was back. I didn’t try to get her ready for bed. Just got her to lay beside me and we cuddled. By the time I turned off the light she was calm and sweet. She wanted to know all about me, where I came from, where I was born. Gawd. I pulled the blanket over us.

In one sense I had chased some of the gremlins away and filled the space. A thin spirit of the man next to her, under the cover of a gossamer shroud. A gossamer shroud. Yesssir.

xxx

I know a man, who in the early years of his wife’s dementia, took her back East to spend Thanksgiving with his family as they had done every year since they got married. The last time he took her was a disaster. The trip filled with endless questions and near panic—“Where are we, where are we going, why are we here?”

The big dinner was uncomfortable for everyone and for one follow up social event he was asked not to bring her. The next year she was in memory care so he decided to take the trip solo. He heard through the family grapevine that someone suggested he had abandoned his wife for Thanksgiving.

When he got back his wife was delighted to see him, did not know he had been gone, and he was informed by staff that she was actually quite happy for the week he had been gone and she did not experience the episodes of grief she has when he visits her regularly. Now, how do you like that? A classic caregiver “fuck me” moment.

Why do we go to such great lengths to be such saps?

Freewrite 2-9-2021 If At First You Don’t Succeed

“If at first you don’t succeed, surrender. There is something you don’t yet understand.”

Rochelle Myers, Michael Ray, Creativity in Business,

By”surrender” they mean let it go for the moment. Breathe, meditate, take a walk, ask yourself penetrating questions, accept your powerlessness in the face of it, let the universe, spirit, doubt, wonder come in. Draw a picture, make a collage, something. Save the wall and your head a few indentations,

In the mid-eighties, Woesha and I went to a workshop put on by these folks as part of a Stanford Alumni program. I’ve used some of that material in my own work many times over the years. It’s great for getting unstuck. So, why haven’t I thought about it until now?

She doesn’t want to take a shower today. It’s been five days. Rather than applying more pressure, I should surrender. I don’t ask her a question. I ask the bathroom mirror, “I wonder why showers are so hard to take?”

She says, “When I’m at home I take a shower every day.” It’s true. Bingo, of course. Right there in front of me. She’s not home. “Okay, well let’s wait until we get home.” Hopefully, she’ll feel like this is home before she starts to stink.

Now if I can just figure out why today’s outfit has to be the exact same color to “match”. I surrender.. I will not, as I have done, show her the Talbot’s catalogue and mansplain how the models’ outfits match even they are different shades of the same colors or even complimentary colors. A fools errand. Let her take her time, wear what she wants. We’ve got nowhere to go. Now time is our time. Breathe.

xxx

It’s the expectations that trap us, not the dementia. Wanna have Christmas? Fine, keep it simple, go easy on yourself. It doesn’t have to be December 25, driving through the traffic and the wind and snow. It can be Christmas whenever it’s convenient. She’ll love it or ignore it just the same.

Whatever you do, most of what you will do is for you. Ask yourself penetrating questions.

“Why is this important to me? Because on that day, we always gave each other…..”

And now you can’t. She can’t, and if you do, it will likely go unnoticed—like the flowers I put on her window sill that are now in the closet, the vase in the bathroom.

I realized so much of what I do is to try to keep her in this world. My world. The world we used to agree on or argue about. Look baby, it’s right here, before our very eyes. Look. But, it’s not.

They say I need to try as much as I can to be part of her reality. Okay. But, that is really boring, unsatisfying, frustrating, depressing. Everything in her room is a mess. Why did they put those pants on her? What has she done with her toothpaste?

How can I lower, even discard my expectations and just be present? I did stock her closet with a guitar and a banjo.

“Do you want me to play you something on the banjo?”

“Yes, I do,”

I play her a few songs. I don’t expect much. She may sit on her bed and listen and sometimes even move her head in time to songs I think she recognizes. She might get up and walk out into the commons to see what is going on. Then I know. It’s time for me to go to my other life. The one where I’m mournful, and hopeful and asking myself questions I can’t ask her.

Woesha is doing much better the last few months. She’s a little more animated, more talkative, and she smiles more. She seems to walk more upright. This is a hoped for, but an unexpected upturn. It’s something you don’t see often in dementia circles. And, it is probably not “real”.

In consultation with Woesha’s psychiatrist we (my kids and I) have been lowering her dosage of Seroquel (Quetiapine). Her doc was skeptical, but willing to try the reduction, just as he was willing to try CBD/THC (10-1) gummies that are now a regular part of her regimen and have been very effective in improving her mood and cooperativeness.

He’s an unusual doc and keeps his ego and his biases in check for our sake. He appreciates that we are willing to try things to improve her quality of life as she descends because he understands that it might make us all feel better.

Institutions and families often choose medication to mitigate behavior problems, but then they seldom go back. They just keep loading the patient up as new problems present.

Woesha has always been active, a championship “shopper”, and never takes well to being told what to do. About a year or so into her residency she began causing more than her share of problems for other residents and staff—invading other’s rooms, making mischief, resisting redirection. The veteran teacher was acting out like the worst of her students. The gummies had helped considerably in the mellowness department, but not enough to satisfy overhead who had been receiving complaints from other residents and family.

So we had what I call a “move her or medicate her” meeting with memory care overhead staff. I agreed to increase her Quetiapine from 25 mg to 100 mg. That’s a pretty hefty dose by any measure. She’s been pretty much in a stupor ever since.

Quetiapine is an antipsychotic used to treat bi-polar disorders and schizophrenia. On the street it’s called “baby heroin”. It is not approved by the FDA for use with the elderly who have dementia. Yet, Quetiapine is a very commonly prescribed drug for dementia patients presenting behaviors that are problematic—especially for group living.

But, caregiving staff and I have observed that she doesn’t cause much trouble anymore. She’s become a staff favorite. So why keep her in a zombified state? We decided to try a reduction and if we run into problems, to switch to Rexulti, a new drug recommended for agitation in dementia patients.

We’re not getting our hopes up. Something else will come up. In the meantime, we’re just trying to soften the impact of the precipices as she descends into the thickening fog of the lowlands.

We can’t ask her what she thinks about this tact. But, I know she would approve. She has always rejected most of “western medicine’s” pharmaceutical interventions, in favor of naturopathic or wholistic therapies.

In the early years she was encouraged to enter a clinical trial for Alzheimer’s drugs. Free drugs, including a placebo, free testing—all the CAT scans and MRI’s your heart desires. She opted for none of it. She had always used nutrition, naturopathic medicines, yoga and fitness regimes to overcome most of the health challenges she faced over her lifetime.

She addressed this new challenge in Woesha fashion—with poetry.

I Remember

	I forgot to take my tincture after breakfast to awaken my memory

I remembered I had forgotten, made a mixture of water, Arjuna, Ginkgo

	Ashwanganda, Maca and Rosemary, stirred it with a small spoon.

	I remembered Pablo Neruda and The Book of Questions. What does it

mean to persist on the alley of death? he asked. My father told me

	of an error he made in the war, calculating coordinates for the bomber

	pilot. Soldiers, friends, lost their lives. A week after confessing, he

slipped away from his body, leaving me with his anguish. Why did the

	man walk a mountain trail barefoot? I walked behind him uphill to

	Mirror Lake, on to Horton Pass, Eagle Cap Mountain to the east and

down East Eagle Creek. Each step became more difficult, knees

	talking back. The creek became a river. The relief and joy I felt seeing

	my sister waiting by the river silenced my whining feet. How do

I get used to her absence? At times, forgetting is not so bad. I’ll never

	lose sight of her, Tincture will help me remember the small things.

	ribbon work she cut and sewed for my first Winnebago skirt, letters

from Oakland, Juneau, Somerville, and Cambridge, her walk, her

	smile, how she made us laugh, never giving up no matter the challenge.

Woesha Hampson 2016

Where Am I Going with This? What a good question.

How do we navigate the landscape in which a person with dementia travels—especially when we can’t really be in it? How can we be a travel companion, a guide, a good camper without losing ourselves and making the trip worse for our companion?

The track of demise for a person with Alzheimer’s is often described as a constantly descending line with intermittent plateaus. I imagine the Grand Staircase of the desert southwest where mesas fall off to lower mesas and then again until the the scree falls to the bottom of the cliff and fans out on the bottomlands which make a rough bed before it is washed away, by rain and wind.

Cue the theme song—Don’t This Road Look Rough and Rocky.

Don’t this road look rough and rocky
Don’t that sea look wide and deep
Don’t my baby look the sweetest
When she’s in my arms asleep

It’s up to us to try to smooth the path. Woesha would likely prefer the metaphor for the landscape in which she finds herself to be the Wallowa Mountains of Eastern Oregon, where we lived, worked and wandered. Where she had a forest lookout (Point Prominence) and scanned that rugged patch of mountains. But, wandering in the Wallowas, as her poem describes, is a vertical experience without many flat spots. I like the idea of mesas where wandering the flats can be a large part of the journey.

The First Mesa

Woesha was diagnosed officially with “Cognitive Impairment without behavioral problems in 2017, though her cognitive challenges surfaced as early as 2014. She was diagnosed with Alzheimer’s in 2019.

It’s hard to pinpoint when Woesha surrendered her “agency “ to try to counteract the disease. At some point she forgot to take her tincture and never remembered again. When she was still trying to find a magic potion, she was constantly confused and frustrated as she tried to do the writing, photo editing, and the creation of her photo books. She became increasingly frustrated and felt “disrespected” by the people around her telling her what they thought she should do.

Second Mesa

Then people began stealing things from her and hiding them. The housekeeper on our last trip to Oaxaca stole her ring she never had. Our Oaxacan friends were confused, but patient with her. The best part of that trip was that we took a long bus ride from Oaxaca to Jalisco through Puebla and the altiplano of Mexico. We were safely ensconced in the bus, content to watch that incredible country role by without the confusing interactions with people and travel details. It was a lesson for me on how to be with her without forcing her to take on the world as she once did.

Walking on the mesa of the moment, she found herself stepping through the shards of a mirror of self that reflected only random glimpses of the sun and the moon and the stars and the people who mattered most.

By then, it was too cold to stay out by the fire we would build down in the yard when the grandkids came to visit. It was then or about then, somewhere around then, that her intention, her agency changed forever.

The desire to name the constellations, count the stars in Orion’s belt, to focus her camera and frame the world in her vision, to shape the images in her poems to express her feelings of loss and wonder—all of that went up in smoke.

She shivered and said “Let’s go inside,” and we did and we got ready for bed and hid in our embrace. We cocooned together for years and I protected her as best I could from the eyes of the quizzical world, though she continued to fool people with her very competent chit chat. Only family could see it if they spent the day. Friends would say, “She seems just fine to me” and I would smile and think, “Take her for the weekend and get back to me. on that.”

Unable to continue her artistic life, she focussed on kitchen duties, constantly cleaning the kitchen. Her morning ritual of making fruit salads became a symbol of her decline. Here creation of ever more simple arrangements of apples, oranges, berries, yogurt and flax were presented to me each morning.They became shrinking mandalas of her vision of the world she could manage.

Third Mesa—Capgrass Syndrome

Though lost and confused, her only salvation became the very people who she had previously felt hard done by and she started packing things up to go find them and the “home” where they resided. The people she loved, dead and alive, kept disappearing including me until the only guy left was me playing the role of Manservant. We wandered this ground by car, packing and driving around the neighborhood to find her husband Tom and her family and the home she had lost until the only home that was safe for her became a place in which we could both wander together and apart was memory care.

A good friend observed that the cruelty of the disease is that it doesn’t remove all agency. Its victims strike out in frustration, they take someone’s pillow off their bed and stick it in the toilet, they stick their sandwich in their water glass, they act when they cannot do or say what they want to do or say. They cannot do or say what they want, but they can resist. Then they get shackled by the medications and everything slows down and everything goes dull and fuzzy.

The caregiver’s dilemma as a fellow traveler.

In her book, Travelers to Unimaginable Lands, Stories of Dementia, The Caregiver and the Human Brain, Dasha Kiper documents the psychodramas caregivers find themselves in as they struggle and adapt on their journey at the side of the dementia sufferer. We are captives, Kiper says, of our own neurological limitations and as fellow travelers we too stumble and fall as we search for our better angels. It’s a fascinating read and provides good evidence of how we are changed on this journey, assuming we survive the trip..

We travel with our charges, side by side, in different worlds. The literature on caregiving has many tenets that are useful tools we collect and carry with with us:

• Shrink their world, physically and emotionally.

• Try to join them in their reality.

• Don’t question, don’t argue, don’t try to bring them “back to their senses”.

These mantras we chant in support groups and bonding conversations with other caregivers and facilitators who become our guides. There are many more. My best go to source is Teepa Snow’s videos. (teepasnow.com)

If we have the means, we always have the option of checking out, reducing our roles as guides and companions, surrendering responsibility to institutions and meds. Please note: dementia caregiving is like the Hotel California. “You can check out but you can never leave.”

In concert with my fellow travelers in my world, we pledge to never surrender our agency completely to the caregivers we choose to relieve and support us. Still, we suffer with the other mantra we hear in support groups:

• It’s always harder on you than it is on them.

We don’t really know that for sure. We can’t be in their minds and bodies to see and feel what they see and feel though we walk with them in these unimaginable territories. All we can do is be present and try to reduce their anxiety and hold their hands. We can, within unknown and unpredictable limits, be their best medicine. We also have an obligation to them, our families, and ourselves to continue our quest for the best medicines for us. Cue the mantras for self-care and pace yourself. Mesa or mountain, it’s a rough country.

Dear Reader,

First and foremost—thank you for reading The Hard Bargain of Love. The comments have been lovely and affirming.

In the ten years of being a companion and caregiver for my wife, Woesha, I’ve sought refuge in writing. Stacks of morning free writes, notebooks of vignettes, poems and wannabe songs litter my workspace. Writing has helped me sort my emotions and the feelings of those around me. Writing has helped me cope, find meaning, and hopefully, make art.

I never wanted to write a memoir, but it seems that is what may be unfolding. Whatever it becomes beyond Substack, I want it to speak to you, to be of value, and when it comes to easing the devastation of dementia on patients and families, I want the writing to “be of use”.

I have struggled of late to conceive of how to organize and shape the stories. Should I organize around chronicling our demise—one story after another? Or should I choose themes that seem to matter most to families struggling with caregiving and the stages of dementia? Or maybe I should be more random, (some might call it spontaneous) and let the weekly writing happen organically? I guess that means no pesticides, herbicides, genetic engineering or, god forbid, forever chemicals.

Any comments will be appreciated. In the meantime, Here’s what I’ve mined from the stacks for this stack.

Best Wishes and Love

Tom

xxx

Hard Bargain of Love Number 5: Precious Moments

Previously in Part IV: Making a Place We Can Live With While We Say Goodbye:

I slip through the closing door and watch her anguished face in the narrowing gap. The door clicks shut. I feel wicked.

These excruciating goodbye scenes are a memory—mine, of course. They don’t happen anymore, much. Likewise, the Capgras or “Pretender Syndrome” period—a drama that went on for two years has faded. During that period I played a lead role in her life, but was seldom her husband Tom, except in random moments. Well, they were random for me. There may have been a pattern, but I could not discern it.

The daily packing up and wanting to go home to Tom or to her long dead parents. These were predictable patterns. They had unpredictable elements that always kept us busy and things painfully interesting. They also had some very precious moments.

From a journal entry 5-12-2020. The Beautiful Disappearing Act

I am alone, you lying beside me. I am another man. I have left the building with the others, “Where did everybody go?” After a while you said, “You might go sleep in the other room. Tom is not here. I don’t know when he’s coming home.”

I am trying not to be offended or worse, angry. She wants to be sure there’s room for him. Space for two, or three? It’s sweet that she wants to accommodate the two spirits—not wanting to offend either.

I have no clue how she reconciles my face in front of her with the pictures on the wall when I point them out. (It’s kind of mean to point them out. I’m breaking the rules of communicating with dementia people—no arguing, no “reality therapy”.)

Don’t ask, “Who am I?” Hell, I’ve asked myself that question all my life. An existential question. Not the point dummy. Who am I, right now, this moment? Who am I in her eyes? Actually, come to think of it, I’ve asked myself that question too. But, that’s not the point either, double dummy. Who am I, right now, in this moment. It’s a fascinating question. Just don’t ask her.

I’ve garnered some clues. For purposes of this story, let’s call me Manservant. When I am either Tom or Manservant she calls me “sweetheart”. When I am Tom and I say “I love you,” she says “I love you” back. When I am Manservant and I say “I love you.” she ignores me or says something like “That’s nice.” Is she being shy, or coy, or …?

So when I am Tom, I am sweetheart AND I am loved. That makes me feel special and so very much alone.

We are sitting at the table. “Do you play instruments?” she asks.

Oh, just getting to know me, are we? (I don’t say that. I remember the rules. Be nice.) In any given moment, I don’t know who I am, But I am here for you, baby. Until I’m not.

“Where did Tom go? Why did he leave without telling me where he’s going?”

The bastard. How could he treat her like this and leave me here to answer all these damn questions? No. Bad Tom. I say.

“He must have had a meeting. You know with the Tribes or something. He’ll be back.”

“When?”

Don’t I wish I knew.

xxx

She’s been in memory care three years now. Yesterday, Laura brought her back to the dining room after changing her. Playfully, she points me out and asks, “Who’s that guy?” Woesha looks at me and mumbles something about a man gesturing towards the window. Oh Laura, honey, don’t ask. It’s okay. After a few minutes, I’m sticking forkfuls of food in her mouth and she knows who I am. I’m that guy. She loves me. I can tell. What’s in a name?

Leaving is much easier now—for her. I guess it is for me too, if only because it’s easier for her. I’ve changed too. I’m not as angry any more at the institution. Raging at The Man behind the corporate curtain is futile and a waste of good bile. There’s so much other shit gone wrong in this world, a person has to learn to parcel the rage. Besides, this dementia trip is a long slog. I still have the rest of the stages of grieving to go through. I have to pace myself.

In the meantime, I have to practice, the Buddhists call it dharma. Be a better caregiver, volunteer, musician, writer, parent, grandparent, friend, partner—have a life outside of memory care. Find as many precious moments as might present themselves.

xxx

Siempre Desnudo

Always the role model I am modeling getting ready for a shower
“Okay now take your pants off.” Look at me I say silently. 
I’m much quicker and don’t get distracted folding my clothes
“Just throw that on that pile, I’m going to wash those.”
She ignores me and folds the pants. By now her role model is naked.

“Okay now the underpants.” “If I take those off I’ll be completely naked.”
She still has her socks on but the point would be lost on her 
Condescending bitch that I am, I say
“Well, that’s what we usually do when we take a shower.”
I’m standing there all exposed watching her fears 
Well up and over her head like her t-shirt and the new sports bra
That confounds her and the situation.

The shower is running, the fan is on, were getting closer
And she somehow, someway trusts me to lead her in
She complains about the cold rocks on the shower floor
She dutifully wets her head and I squirt shampoo in her hand.

We are all naked before this demon. Vulnerable, unsure, fearsome
Angry, frustrated, sometimes even gentle and rewarded
Hair dryer howling, running my fingers through her hair
I lean in and kiss her on the cheek.

“Thank-you” she says.

Tom Hampson
July 2023

The monthly concert for Woesha’s memory care is down to the last song or two. Lunch will be rolled in soon, (unless there’s a cook shortage, which has been happening lately). Care staff are weaving in and out of the chairs and setting tables.

The energy level is still high, feet are still tapping and people still singing along. Wendi, the Activity Director is encouraging us to sing one more, something we all know. I make my last bad pun of the day—something about hoping we left them hungry for more or maybe we just spoiled their appetites—for bluegrass. Caregivers groan but the residents laugh. They still laugh at stupid jokes! It’s Dementia’s Revenge.

Greg says “Okay, Here’s a song by Woody Guthrie. This Land is Your Land. Should make us all feel a little more at home.” Fat chance, I think. But, it’s worth a try.

When the sun come shining, then I was strolling

And the wheat fields waving, and the dust clouds rolling

The voice was chanting as the fog was lifting

This land was made for you and me

By all reports everyone is happier than they’ve been all week. I don’t know if I should feel elated about that or frustrated. Even though Woesha and I are paying five star hotel rates, I still end up feeling like she is staying in a very fancy warehouse where not enough is going on. Wendi, the activity Director is absolutely incredible, but she has four memory care neighborhoods to cover. She had been promised an assistant for two years. She finally got one and it has helped a lot, but the ground can still not be covered to anyone’s satisfaction, including Wendi’s. Where there are no activities going on it can be a pretty boring place.

The music is special for all the psychological magic it brings. The family and other community members who come to be with the residents make magic too. When I moved Woesha in only five or six resident’s family members (out of the fifteen) came to visit regularly and few engaged with the other residents.

At that time the staffing level was only two people.The institution was just emerging out of the pandemic trauma, and reforms and new hires were being made, but not fast enough for the families and the care staff. My kids hated the place and wanted me to move Woesha. I got a broker and shopped around. I found some places that might have been marginally better, but for the trauma of moving her again and the risk I’d be taking that it wouldn’t be better, I decided to try another path.

I and others voiced our complaints at length to administrators. I also offered to help. I listened and made suggestions and tried to stay calm. In the end, or at least for the moment, I decided the best thing I could do would be for us to stay and stay engaged. I suggested some organizational development ideas for which I was qualified to recommend, but my suggestions were shined on by upper level admin staff.

I decided, despite my frustration with the corporate types, the best choice for making things better is to—how can I say it without sounding like a monger of progressive cliches? Alright—“build community”. There, I’ve said it. Because, no matter how much money you pay these outfits they cannot build community, but, they can facilitate and support it if they choose. The community bit is up to the families and direct service level staff. Luck or fate plays a role too.

In the last year, some new residents have moved in bringing with them spouses, adult children, and friends who devote time to being there. As the new families got to know each other we decided we could make the place better with intention. Wendi says we’ve built a community like none she’s seen. As if we needed more people to care for, we care for each other.

Family members do art projects, puzzles, organize baby showers for care staff, play music. But mostly, we sit with our lovelies and talk, help staff serve and just be present with the whole crazy crowd. We track down their stuff, or try to, and participate in Wendi’s programs. If we can, we calm them when they are agitated, cover for each other if we are trying to ease ourselves out back into the outside world.

Coincidentally, there’s been a lot of changes to the in facility organization in the last couple years. Staffing ratios have increased. We have new memory care administrators who really want to make it a special place. Communication is better with the administration. Staff organized a regular support group meeting for memory care families. Wendi facilitates it, but the families make it work. Some of the husbands organized a coffee klatch—five old men, sitting in the coffee shop, looking at each with expressions that say,”How the hell did we get here?”

We share useful tips on ladies underwear and medications. We compare levels of decline and trade stories of the crazy things our wives do. We laugh at the dark side. We are experts at gallows humor. We pretty much agree that we are failures. We feel like we should have been able to have gone on indefinitely, caring for our wives at home, despite what our kids told us. We also tell each other we are doing a good job and remind ourselves to pay no attention to the guilt peddling demons sitting on our shoulders. Even when spouses pass on the men have kept coming to coffee and to the support group.

I told them one meeting there’s always unintended consequences to collective action. I didn’t know I was going to fall in love with a dozen other dementia patients and their families. Damn it. We watch and we talk and keep each other informed about the things that staff cannot say because HIPPA rules do not allow them to share such information. We know when residents fall, get sick, go to the hospital or into hospice. We attend vigils and their celebrations of life. We do too much and we try to help each other find a way to do less. Like our dementia ravaged loved ones, we too want to go home.

The band finishes on I’ll Fly Away.

Just a few more weary days and then

I’ll fly away

To a land where joys will never end

I’ll fly away

I’ll (fly away) fly away, oh Glory

I’ll fly away in the morning

When I die hallelujah by and by

I’ll fly away

I’ll fly away

These are sad damn songs. Everybody’s happy. We take our bows and thank everyone for letting us play. I walk the band memebers to the door, flash my key card and hug them all goodbye. I go back to the lunchroom to join Woesha.

I’m spent. Drained. Blue. I want to pack up my instruments, and my troubles, and go. I can’t. I have lunch and the Goodbye Scene yet to go. I hate to leave her. I can’t wait to leave her. I can wait. I can. I go back to the lunch room, sit with her, feed her forkfuls of lasagna.

I say, “It’s not bad lasagna “

Marion says, “Soup’s a little salty today.” She knows I’m itching to leave.

“Damn, Tom. You gotta go to a meeting? That sucks.”

“Ooh ouch, look at the time. Yeah, thanks for the reminder, Marion. Gotta go.” I turn to Woesha.

“Come on, walk me to the door.” Hand in hand. “Come on we have to hurry, Sarah’s coming, she’s going to want to get out.” Sarah notices us and with a grim, determined look she begins to wobble towards us to make her escape.

“Can I go with you?”

“Ah honey, you wouldn’t be happy at that meeting.”

“I’ll sit in the car.” I violate the house rule: Never Argue. “Ah honey, no you wouldn’t. You would not stay in the car.”

“Yes, I can.”

“Babe, it’s too cold.” I’m desperate. I fib. “I’ll come see you right after the meeting.” I flash my keycard, she starts to follow me out. I step back in. I hold her. “Honey, I gotta go, you have to stay. I’ll be right back.”

“When?”

Lie to me, baby. “Maybe an hour or two.”

“What am I supposed to do here?”

“Hang out with your friends, they need you.”

“I don’t know these people. I want to go with you. I’m going to miss you big time.”

“Ah sweetie, I gotta go and look, Sarah’s here.” I flash my card again, the door clicks I open it and turn to her. “I love you more than all the stars in the sky.”

“I love you too. I want to go with you.” She’s getting mad and so am I. There is no way to end this well.

“I will be back, I promise.”

“When?”

“I’m sorry, I love you, I’ll be back. Soon. I promise. Soon. I love you. Really.”

My words slip through the closing door and I watch her anguished face in the narrowing gap. The door clicks shut. I feel wicked. I hear her pushing on the door, pushing on the door. She may have even pounded on it, but I’m not sure, I’m already at the end of the hall, turning the corner, down the stairs, a strained smile to sweet Amy at the front desk, through the automatic doors, and out into the cold light. Breathe.

I did, despite my fibs, tell her the truth. I will be back. I try to reassure myself with caregivers’ truths: Time, has no meaning anymore. An hour, two hours, tomorrow, next week, it’s all the same. She won’t remember how you left her. She will love you when you come through that door again.

“Time” and “Home” are illusive constructs. As they decay and crumble around us, I tell myself we will somehow find our way through the rubble. We might even piece something together, something to hold onto, for a little while. Maybe for a little while.

Next: The Long Goodbye: If it were a show on tv it should be a Sit Com

We are five volunteers sitting in a semi-circle playing bluegrass and country music to the residents of my wife Woesha’s memory care, their caregivers, and families. It’s kind of a house concert though they refer to this place as a “neighborhood”. It’s the highlight of the month as far as programming goes. Wendi, the Activity Director, tells us so.

This is “home” for Woesha now, though she doesn’t see it that way. She is much more comfortable when I’m here and sits next to me as we play. She is still in the “adjustment phase”. This is a period of indeterminate time and is unique to each resident. Many never adjust. I would suggest almost no-one does. Every resident I know is still trying to find “home” no matter how long they have lived here.

“Home” is a frequent theme in the bluegrass and country music, so we do a few of those yearning songs. We all know, on some level, we can’t go home again, in so, so many ways. Most of these songs are sad, so it’s not the lyrics that contain the magic, although everyone likes to sing along if they know the words. It’s the melody and the rhythm that stirs up the memories. We are trying to make everyone feel a bit of home, though I’m pretty sure the irony is not lost on the folks with dementia.

“Here’s a song about place you might recognize. It’s called The Old Home Place”.

It’s been ten long years since I left my home
In the hollow where I was born
Where the cool fall nights makes the wood smoke rise (glow bright?)
And the fox hunter blows his horn

I feel in love with a girl from the town
I thought that she would be true
I ran away to Charlottesville
And worked in a sawmill crew*.

Refrain:
What have you done to the old home place
Why did they tear it down
And why did I leave the plow in the fields
And look for the job in the town

When I brought Woesha here, I had no illusions this would be home for her. I just hoped she would grow to accept it as a safe and comfortable way station as the fog of dementia grew dense and the notion of place became illusory. She had struggled mightily for years to find home and the guy she knew as Tom. I told myself I was doing the best I could by her. They would keep her safer than I could and I had a better chance of surviving this long, miserable trip.

Like a true blooded individualistic baby boomer, and a white guy, I used to think children should leave the nest and return often, but not hang around the fort. Our kids dutifully built their own lives apart from us. But, as we and they built an extended multi-cultural family, I began to wish for a family in the “old way”—under one roof, or in the same neighborhood, taking care of children and the old ones as has been the model from time immemorial. For most of us, that boat has sailed for the new world.

The options for dementia care in our culture are purchased with large amounts of money, heartache and dissatisfaction, if not (in my case) outright anger. (You might, dear reader, have noticed there’s an anger management theme developing here.) Enabled by our wealth, society has devised many institutions to replace the gaps left by the change in American (mostly White, Anglo) culture. Of the old options—nursing homes have been awful since inception. Now, courtesy of the demands of our aging population and their wealth, there are many other good models for elder living and care. The senior living enterprises almost always offer memory care.

These places are popping up in affluent communities like dandelions. One popped up and took the hills above our neighborhood—a fancy affair with chefs and valet parking and a health club and beauty salon and sales and marketing directors, condos, houses, assisted living and memory care.. Along with our neighbors we objected to the development and like some of our neighbors we found it had a place in our lives, albeit an unwanted presence.

These places are obscenely expensive—going rates $10-15K per month for memory care. No matter what they promise— this is where the anger comes in— they will never, and can ever, meet your emotionally-charged expectations for proper care for your loved one. You will steam and complain and argue with the providers. Here’s where anger management comes in handy, and I’m getting better at it. But, indulge me, would ‘ya?

Let me rant for a bit. Some will say it’s not fair, especially the corporate suits. Maybe it isn’t. Nothing is fair about dementia.

Many memory care enterprises are part of larger senior living real estate deals. The cost accounting and the profit pressures that drive staffing decisions are handed down by faceless corporate drones. They will make miserable the work lives of the caregivers, nurses, and the facility administrators who really do care.

The institutions go through maddening staffing changes in an impossible labor market for health care workers in an ailing, profit driven health care system. They will try to charge you for everything, and while building administrators are constantly trying to improve services and facilities, Corporate tries to give your loved one the lowest level of service allowed by law. They don’t mean to do it. Maybe. They say they want to be better. The landscaped drive to the grand entrance is paved with the best intentions.

They all have lovely mission statements and well-honed values, and caregiving philosophies, AND they want you to believe they believe them, AND I’m sure even at Corporate, they want to believe them. At the facility level the staff try their best to live by these values. Corporate’s drive for uniformity and cost control often frustrates the efforts at the facility level to customize care to meet customer needs. There is never enough training for care staff and never enough time to get training because they can’t “afford” to hire enough staff to work while others train.

Once you have made the crushing choice, you will cuss the whole idea of memory care as you go from room to room looking for lost shoes and clothing and hair brushes, and family albums you should never have brought with her in the first place. The long list of services provided will be exceeded by your long list of what services are not being provided as advertised.

No matter how good they are, their best will never be your good enough. It can’t be. The inadequacies are baked into the system and the disease that created them. AND, your expectations are baked into your casserole of guilt and love, and multiple layers of the grieving process.

The frontline caregivers, ideally, are expected to have, or quickly acquire once hired, the skills to be companion, psychologist, referee, conflict resolution specialist, wait-staff, loving orderly, dishwasher, housekeeper. They must be patient and hopefully compassionate when their “charges” growl, gesture, hit, slap, refuse, constantly ask for attention. Some caregiving staff are incredible, amazing, beautiful, undaunted. Many staff are very good. A few are not-so-great, but, in the best outfits they don’t last long leaving a hole in the staff rotations, or they send them to graveyard shift.

Imagine two caregivers (or sometimes three) caregivers per shift, working an eight hour shift (some also work doubles and extra half shifts), making squat, who have to get fifteen to seventeen dementia sufferers out of bed, dressed, teeth brushed, maybe showered (if they agree, if they don’t they have to “re-approach” at least three times), get their clothes laundered, get them fed three times a day, medicated, and “redirected” compassionately when a resident goes astray. (Like my own ever loving “refusnik” who compulsively wanders into others’ rooms to go “shopping” or refuses to sleep alone in her bed and wants to sleep with others. Under State law, which guides everything the institution does, such behavior requires permission of the other family. Seriously. There are 40+ bullets to the State mandated patient rights they have to post, but let a resident choose to sleep with another and they are no longer adults, consenting or otherwise. (I will tell this story in a coming episode.)

I have come to care for the memory care administrators, although we have our battles, for they too love and suffer at the hands of these cruel diseases and the system—the corporation and the State’s schizophrenic regulation.

If you have the money, you have choices, but you likely still won’t be happy. If you want your dementia sufferer to be cared for by your standards, you won’t be free from caregiving yourself. What? No. unless you are just looking for a warehouse, you’ll be lucky to cut your caregiving workload in half. For many of us, that reality is maddening, desperately so.

As residents go about the neighborhood having fits, so do the families. Residents die or move out and new ones move in, each with their particular set of issues. The adjustment period is often excruciating for everyone, resident, family, and staff. Whatever behavior balance is achieved within the neighborhood for the moment is upset by the natural deterioration in the minds and bodies of the residents and the chemistry among residents and staff. Staff changes, administrative changes, State inspections, care plan tactical changes and seemingly irrational pricing policies for care make everyone’s jobs harder. We complain and cajole and go to meetings and support each other as best we can.

End of Rant.

At some point, I came to a point of acceptance—not for the status quo, not to find another place plagued by the same issues, not to risk the trauma of moving Woesha—but to try to make it the best home it could be. A number of family who sit in the audience today, have decided that if the system is going to change, we must be a part of the solution. So we strike up the band and hold our loved one’s hand and look for ways to make the place better.

“We know you like this one, so join in with us, okay? It’s Will the Circle Be Unbroken.”

I went back home, the home was lonesome

Since my mother, she was gone

All my brothers and sisters crying

What a home so sad and alone

Will the circle be unbroken

By and by Lord, by and by

There’s a better home awaiting

In the sky Lord, in the sky

Next :Part IV Making a Place We Can Live With While We Say Goodbye

We are sitting in a semi-circle playing Bluegrass and Country music to the residents. This month we are five musicians and one groupie. Mitch on bass, Cheryl on fiddle, Anne on mandolin, Greg on guitar, I am playing banjo. Woesha is sitting beside me. She’s the groupie. She often rubs my shoulder while I’m playing. I joke that most musicians get a massage after the concert. The dementia patients tap their hands and feet and smile. Many residents in our memory care “neighborhood” have their groupies too—husbands, wives, children sitting at their sides.

It’s not a concert anyone would go to hear if they had their druthers. We are all here because we heard the chorus of people all around us—take care of yourself so you can be there for your loved one. Someone is bound to mention the oxygen mask analogy—in a airplane we put on our mask before we put it on our child. It’s corny but it fits—the plane is definitely going down. It’s just a matter of speed and the nature of the crash and the number of survivors.

Depending on the study, it is estimated that 30-40% of caregivers give up the ghost before the ones to whom they give care. Almost everyone suffers from stress-related illnesses in addition to the usual crap that plagues those of us of a certain age. We are in no shape to be taking care of an adult-sized toddler. We just aren’t, but we do it anyway, until we decide we can’t do it any more. At least, not alone.

We have to find help—the industry calls them “care partners”. These partners can be family, friends, or institutions that help us with respite care, day-care, in-home assistance, adult foster home or memory care. We have choices, but none of them are very easy ones and each situation, like each person’s dementia, is unique.

For every caregiver, the selection of care partners and strategies are practical, financial and existential choices at every step in the grinding process. They challenge our values, identities, imagined life trajectories. This is especially true for spouses.

I’m in two support groups, one sponsored by the Alzheimer’s Association that has Zoomed together since the pandemic and one that is made up of spouses and relatives who have family in the memory care facility where Woesha lives.

We regularly ask each other: “What am I doing?” The answer is always: “Saving myself—so I can have some kind of life outside of caregiving.” Or, “…so we can be here for her/him for all the days remaining?” Then we ask: “Are these mutually exclusive? Do I still love the person she has become?” Then someone says: “ Yes, she is gone, but she is still here. We can still walk, hold hands, talk about nothing, cuddle. Glass half-full, blah, blah, blah.” Look at her now, she’s pouring her half-full glass of water on to her plated lunch.

Like my fellow travelers, I had no clue what devotion really meant until faced with these questions. Now we are as tangled in our words and emotions as our beautiful charges are tangled in theirs. Until it isn’t. That’s the thing we have in constant common. Things will change and they will get harder and they will end, but we don’t know when and at what cost. And no matter what we do, we will feel guilty for not doing enough.

“Greg’s going to do a song by Lefty Frizell. Lefty was always trying to do the Right Thing, but you know how that can go. It’s called She’s Gone, Gone, Gone

She said if I ever deceived her

She’d be gone before I could count to ten,

I guess that I didn’t believe her

‘cause look at the trouble I’m in

If I only knew where to find her

I’d crawl there on my hands and knees

Each tick of the clock’s a reminder

She’s one second farther from me

Chorus

She’s gone, gone, gone

Gone, gone, gone

Cryin’ won’t bring her back

The more that I cry

The faster that train flies

Farther on down the track

Nearly half of my support group members are still caring for their spouses at home. They are absolutely incredible and they are wearing out. We help each other as best we can with advice on the practical side of caregiving—meds, distraction techniques, incontinence strategies and tactics, but the elephant in the Zoom is ever present. Are you, can you, do you, will you, do you think maybe…it’s time.

Moving a loved one into memory care is one of the hardest decision points in a person’s life. The literature is replete with advice. “Don’t wait too long.” How long is too long? They say, ”You’ll know.” They say “Read the signs”. But, we are usually pretty deep in the woods by then, and not very good at reading signs. Often, the kids see it first. By then it will probably be later than we think. And there is one person in the family who almost always thinks it’s a very bad idea. Yep. The one you are trying to be there for, the one who will be most impacted (maybe), the one who will feel the most betrayed. In my case, that would be Woesha.

“Know the signs.” I first noticed signs in 2014 when she lost her way in Madrid. She was diagnosed with benign sounding “Mild Cognitive Impairment without behavioral problems” in the Fall of 2017. Actually, by then there had been some behavior problems the family noticed, but I didn’t tell the doctor on her. She got the expected and dreaded “Dementia likely Alzheimer’s” two years later. For me the signs pointed to memory care after two and a half years of home care, due to the stress and risks of caring for someone with Woesha’s health profile and symptoms. Those next two plus years were hard traveling for us both.

She was a very healthy, ex-soccer player with something I learned after many months is called “Capgras or Pretender’s Syndrome”. Early on in her trek across dementia land she lost me. No, not just forgot my name or my face, she completely replaced me with another man and then spent the next few years trying to pack up and get me to take her home to this guy coincidentally also named “Tom”. When I couldn’t producer the Tom of her reality, she wanted me to take her to her parents, long dead in my world but very much alive in hers. If I would’t take her home, Tom would, if she could just find the SOB.

Being the loyal manservant with no name except for Tom which confused her mightily, I would drive her around the neighborhood multiple times a day hoping the next time we turned in to the driveway she would see it as home and me as Tom. I could never figure out how to run around the house, sneak in the back and open the front door in time to become Tom. I would have the kids call on FaceTime and then sneak away and reappear and they would say, “There’s Tom!” It worked for awhile.

I hired in-home care workers for “respite care” for me. Eventually they had to fire us because Woesha kept out-walking her caregivers and they were afraid of losing her. Our house became a prison and I the warden. Locks, alarms, sleepless nights, endless redirecting. I read the books and compared notes with my Zoom group. I was blessed with a healthy, mobile, highly agitated women.

Woesha’s psychiatrist started counseling me. “You know, Tom, caring for someone in her condition is just as stressful as caring for someone with severe disabilities or incontinence—maybe worse. You need to consider all your options and take care of yourself.” Were agreed we both needed something better. It was another year before I pulled the trigger. On memory care, I mean.

Caregivers, if they read the literature, are advised to “tell compassionate fibs” (“fiblets’) rather than a disturbing truth, or god forbid argue the point. We told Woesha I was leaving for a week and she was going to get to stay in the lovely hotel up the hill from our house. The first night she wandered into Ray’s room and told him and his wife who was visiting at the time, that this was a hotel and they were in her room and would have to leave. It was recommended I stay away two weeks. I might have lasted a week.

An excerpt from my journal the day after we made the move. :

Though she’s moved out—let’s be honest, I’ve moved her out,—though she’s not here, I speak her name, I tell her how she puts things in the wrong places, then chastise myself for bringing it up. For what does it matter? She’s gone.

I’m thinking of her in our bedroom, folding her clothes, whispering to herself. I would quietly approach her whispering babble in her ear, my nose buried in her hair. “Are you making fun of me?” Yes, I would say and go in for a kiss.

I miss her so. She wants me to come take her home, but we played that game many times a day and if I did, she wouldn’t be any happier except she would have me and I would have her and there is a lot to recommend that. Yet, it would only fulfill that conceit of the heart that I would be enough. In that play, no matter what I do or say, she feels abandoned. “Where did everybody go?” If she found me, my company would be insufficient whether I am Tom or the mostly nice guy who stays with her and is always telling her what to do.

Perish the thought of leaving her in pain, alone in the scant crowd of the quiet ones in memory care. The conceit of this play is that it is for her own good. It’s not. Her own good is getting everyone she wants to be with her. But, they have passed on, or are far away with busy lives. I cannot bring or be that. I can only be this bundle of conceits I know as me and she occasionally knows as me, but a shallow version—fragmented and mostly a vehicle for her desires of getting to that home where she is warm and holding court with her parents and siblings.

Now she wanders the Memory Care. I’m just gone. Her worst fears moving her from room to room in this alien home.

They call this a “journey”. I used to hate that word. Okay, I still hate it, but not so much any more. The people who use the term are usually so sweet. “I feel for you and Woesha as you go on this journey….” I want to say: “It’s not a journey, it’s a trip—a bad trip—a one way trip. and it’s a slog. They don’t call it the ‘Long Goodbye’ for nothing.” It ends in hospice and quiet vigils. Every month or so we lose an audience member. Every month we play to someone new who feels betrayed and wants to go home. Some violently so. However rough or rocky, we go down the path together. I’ve actually been caught calling it a “journey”. I guess so that my anger wouldn’t show.

“How’s Woesha?” “ I say “fine”. “Really?” “Well, I mean, for someone who has dementia.” “Oh….Does she still remember you?” I want to say, “Of course she doesn’t remember me. She has dementia.” I just say, “On some level.” or “On some days.”

We both needed something more. The question then and now is “Can we find it?” Now she sits with me and the band, rubbing my shoulder.. “Here’s another happy song, our bass player’s going to sing. It’s by Merle Haggard and it’s called Sing Me Back Home.

The warden led a prisoner down the hallway to his doom

I stood up to say goodbye like all the rest

And I heard him tell the warden just before he reached my cell

Let my guitar playing friend, do my request

Let him sing me back home with a song I used to hear

Make my old memories come alive

Take me away and turn back the years

Sing me back home before I die

Next: Finding Home

Part I: I’m Crazy for Loving You

Woesha was here a minute ago. How did I lose her so quickly? Maybe If she hears the music she will come back. She always said “I fell in love with a banjo player and then he took up the fiddle.” That nearly ended us. Well, to be fair, there were some other mistakes I made. Now this.

In a past life, Woesha was a teacher, tribal education director, poet, photographer, world traveller. “Woesha” is a Cheyenne name and means “Happy Woman”. Her family on her mom’s side are Chippewa and Winnebago (Ho Chunk). Her Ho Chunk name is Humpgomaneenga—“She Who Walks at Dawn.”

Woesha is fair, soft radiant skin, high cheeks, blue eyes, elegant gray hair. She’s what they call on the reservation, (when they are trying to be polite) a “light skinned Indian”. When they want to be a little mean they say “that breed”. When Woesha’s not mean, (they call that “going all Rez Girl on you”) she can flash a smile that paints the room in warm light. We have been together fifty-seven years. Now she’s nowhere to be seen. Woesha is always trying to escape. Maybe with all the comings and goings she made it.

I set down the fiddle and get out the banjo.

Ray comes walking in to the dining room. I salute him. “Good morning, sir. Where might I ask, sir, is your walker?” He salutes back. “At ease, Lieutenant.” Joey, the Med Tech, says, “Ray, go get your walker,” Ray salutes, and goes to his room. According to Ray, his walker, a snappy red affair, is limited to 55 mph. I call it his “182” since before dementia shot him out of the sky, he was a private pilot with a love for Cessnas.

Ray charges back like the Red Baron. He stands there in large red sneakers, hovers over me with his 6’2” frame. He whips his walker around and tries to sit in it. This is a very dangerous maneuver given his size and balance issues. Joey flies in. “Ray, let’s sit you in a chair. That will be safer.” Ray looks at me and says, “I have dementia.” “Wow, Ray,” I say, “I have one too, mine’s a 1964 Dementia.” He smiles. “I have a 1968 Dementia.”

I try to look over Ray to see if I can spot Woesha. No sign. We may have to start without her. I’m going to miss her.

Wendi, the Activity Director, is shuttling folks from other “neighborhoods” into the room. Walkers and wheelchairs are parked. People are set in place and offered drinks and snacks. “Seen Woesha?” I ask. Wendi flags Joey to start a search. Members of the band trail in and begin setting up. We tune and banter.

The musicians come once a month. Everyone loves it. Except maybe me. I come nearly every day to get my heart strings plucked in multiple ways. Like right now.

November 2, 2022. Like our anniversary and the dates of our kids’ and grandkids’ birthdays, it’s one of those dates I’ll remember all my days—the day I moved her into memory care. I’ll remember it unless I too join the dementia band. I’m going to try to avoid that, but you know what they say about dementia care-giving. Maybe you don’t. I’ll explain later. Hint: it changes your brain chemistry too—makes you a little crazy.

But first, we have a gig to play with or without her. We are seated in a semi-circle—bass, guitar, mandolin, fiddle, banjo and an empty chair I was saving. And look who Joey found prowling someone else’s room. Joey escorts Woesha to the front. She sits beside me and pats my shoulder while I wrassle the pegs on the banjo. I breath a little easier, except but now I have to perform. It’s always something.

Our set list includes old time fiddle tunes, bluegrass and old-time country songs with an emphasis on sing-alongs. Will the Circle Be Unbroken, This Land is My Land, Brand New Tennessee Waltz, Don’t this Road Look Rough and Rocky, I’ll Fly Away, Head over Heels, Gone, Gone, Gone.. These tunes are common fare for most bluegrass jams.

Here in memory care, the lyrics always take on so much more meaning as we belt them out in rough-hewn voices to this faraway crowd. They are literally gone, gone, gone, but, still here. Everyone wants to fly away, but, they are here, ever present, but in a reality of their own, which we have entered, but cannot fathom so we too are a bit lost.

Even though it’s morning, the best time of day for someone with dementia, they are sleepy and dazed. Lena has her head on the table, Amelia is sleeping sitting in her wheelchair. Others are awake, but seem doubtful, many of them cynically so, that anything is going to happen at all. Cindy sticks her tongue out at me. I stick my tongue out at her, and smile. She smiles back. Her husband, Bob, sits beside her. There are a number of family members here. They are some of our most loyal fans, even though it’s safe to say they are not fans of this kind of music. The family members love it because of the way it makes their loved ones feel. They come a little bit more alive together.

Greg, our guitar player starts us off. “Okay folks, we’re going to start this off with a song for Mary Anne. She just got back from Mass and so we thought we’d play a nice Irish Catholic ditty called St. Anne’s Reel.” Mary Anne looks confused. Her daughter, Marion, holds her hand and explains.

When the music begins the comatose come alive. Hands and feet begin tapping. Eileen’s hands tap on the table all day long to an inner rhythm, but now her hands begin tapping in perfect time to this music.People brighten like sunflowers turning towards the sun. Staff and family join the stuttering chorus.

Everything they say about how music enters and soothes the soul of the dementia sufferer comes true before our eyes. Rough starts, bad notes, forgotten lyrics, all are forgiven. They love us, despite our failings. The staff, the husbands, wives, daughters, sons, sons-in-law, everybody gets into it. This is the best crowd ever for amateur musicians. Our band loves this venue.

I hate it. That’s not true. Yes, it is. I come here every day. I’ll never get used to it. Yes, I will. I’ll learn to love it. Are you serious? Nobody likes it, if they have someone they love here.

“Here’s one you all know, You Are My Sunshine.”

The other night, dear, as I lay sleeping

I dreamt I held you in my arms

When I awoke, dear, I was mistaken

So I bowed my head and I cried

You are my sunshine, my only sunshine

You make me happy when skies are grey

You’ll never know, dear, how much I love you

Please don’t take my sunshine away

Like so many others in the room, I brought my sunshine here out of self-preservation. Cue the survivor’s guilt song. “Ladies and gents, Tom’s going to favor us with his Survivor’s Guilt Song.”

Wait, just a damn minute. I’m still working on that song. Let’s play something else. I’ve still got a long way to go to get through the stages of Grief : Denial, Anger, Bargaining, Depression, Acceptance. Let me see, where am I in that set list? Maybe the second? Anger. Definitely the second. I’m pissed about everything. There are so many things wrong with this place. I don’t know why I thought bringing her here was a good idea.

From her initial diagnosis of “Cognitive Impairment without behavioral problems” to the day we moved her in to memory care took about six years. During that period Woesha and I descended, hand in hand, into shadowlands that mirrored and distorted the life we had shared for over half a century. While she struggled with maintaining her grasp of daily living, I joined a community of fellow travelers through books and videos and an Alzheimer’s Support Group. Some of my newest dearest, friends placed their loved ones in memory care as we looked on. Many are still caring for their spouse or parent at home. None of us are satisfied we are doing the right thing. None of us are sure we will ever know what the right thing might be.

All we know for sure is that old refrain, sung by our friends, family, support group facilitators, care experts everywhere: “Take care of yourself. Take care of yourself, wherever you may be.” Yet, our self is inextricably entwined with the self of the other. So how do we separate and combine ourselves in new ways and find care all around?

“Anne, our mandolin player is going to give us a version of a song we think you’ll find familiar

. Don’t This Road Look Rough and Rocky?

Darling, I have come to tell you

Though it almost breaks my heart

but before the morning, darling

We’ll be many miles apart.

Don’t this road look rough and rocky

Don’t that sea look wide and deep

Don’t my baby look the sweetest

When she’s in my arms asleep

Next: The Road Leading to Memory Care—It’s Not a Journey

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After retiring from a career in Tribal and non-profit organizational development, I set my sights on writing full time, playing music, and traveling in concert with my wife, Woesha. Woesha is a retired teacher, poet, photographer, soccer player, engaged grandmother. We had a lot of stuff on the list. Our plans were upended by Alzheimers. After nearly ten years of caregiving, I want to share some of the stories and lessons I have learned.

The writing has been in the form of memoir and poetry. I have shared it with friends, family and my support group families. They think I should seek a wider audience. I’d like that too, but mostly, I would just like to get some of this stuff out of my head, heart, and the notebooks and journals piled up all over the house and see if it’s of any use.

Woesha has been in memory care for three years. I visit her every day and actively participate in the memory care activities including regularly playing music for our residents. The first series of posts are excerpts from my memoir. There will be many more to come. I hope to post weekly.

If you think it has value and subscribing would give it a wider distribution and us a chance to talk then please subscribe. That way we can also build community through sharing around this phenomenon that is rocking some many worlds around us.

The first series deals with that terrifying decision all caregivers face: to place or not to place a loved one in memory care.