The Starmaker Machinery

More than halfway through the first 30 days after J’s burial, and the myth is growing. J and I were together for 33 years. We were among the first same-sex couples to have children through artificial insemination and to take the necessary steps to legally make them ours.

And so, now that J is gone, others need to mythologize our relationship. From the outside, we were role models.  I can’t say how many telephone calls and cards I’ve gotten that say we showed others how to sustain a long marriage.  It did not always feel that way from the inside.  Indeed, for the last 10 years, likely through no fault of her own, J did not/could not fulfill the wifely duties she had taken on when we wrote our ketubah, the Jewish marriage contract.

Alzheimer’s joined our family in the mid-2000s, although we didn’t know it until later. J was not formally diagnosed until 2011, but with the help of the retrospectoscope I can see signs as early as 2005 or 6. J stopped covering her mouth when she sneezed. A committed environmentalist, she stopped cleaning up her cigarette butts. More painful for me, she stopped asking me about my life with any degree of interest.

The years before J’s diagnosis were less than ideal. J stopped wanting to travel or try anything new. She totally ignored my 50th birthday. She denied that our very old dog was routinely soiling our living room floor.

Publicly, we remained the ideal couple, feted and celebrated, and yet I sometimes fantasized about leaving.

We got the Alzheimer’s diagnosis and of course I stayed. I am glad I did. I learned so many lessons about love during the last 10 years.  That does not mean, however, that we should be placed on a pedestal.

Under Jewish law, mourners are supposed to tell the truth about the deceased and not exaggerate their praise.

Much about J was praise-worthy.  It is an exaggeration, however, to hold us up as a wildly successful partnership for all our 30-plus years.  I wish that outsiders could see the fullness of the relationship. There were hurts and losses and misunderstandings as well as joys and triumphs. J was wonderfully human, and our relationship was complicated, and ravaged by Alzheimer’s disease.  During our years together and now, it was sometimes tinged with pain and always filled with love.  At this stage of mourning, that is my truth.

Comfort Potter style

J has stopped eating and drinking. We are told that if nothing changes she is likely to slip away in her sleep in the next week or so.

The family gathers in her room. It is becoming routine for us to drive out to J’s facility together: me, our son, our daughter and our son’s life partner.

There is comfort in the familiar. We are a Harry Potter family. Our son, T, is exactly Harry’s age. We read each book aloud as a family as soon it came out. We read them multiple times: silently alone, all together, in various duos. J, who has been living with Alzheimer’s disease for at least a decade now, was the best reader. No one could come close to her voices: jovial Hagrid, stern Prof. McGonagle, evil Dolores Umbridge.

We still read Harry Potter aloud, but now we read to her. Surely she doesn’t understand it at all, but it clearly calms her.

We also read it for ourselves, and it comforts us, too, reminding us what we had even as it also reminds us of what we have lost.

Of Ice Floes and Broken Hearts

Occasionally my father would talk about death. He fantasized about going out on an ice floe, very late in life, and meeting his end. He said there would be no pain. He would simply fall asleep and not wake up.

He had no such luck. At 79, he went to see his cardiologist and was told he needed emergency quintuple bypass surgery. Extended time on a heart and lung machine allowed the repair of his heart but also damage to his brain. He was never the same.

Most devastating for him, he never returned to work. A neighborhood doctor, medicine was one of his great loves.  My mother, his five girls, the woods and his vegetable garden were some of his others.

My mother struggled on in the single-family home my sisters and I had grown up in, but she grew increasingly isolated. Eventually, my parents moved into a continuing care retirement community. My mother stayed in independent living, and my father in a skilled nursing unit.

It was the best solution for them. My mother could once again have a social life — playing cards, working in the CCRC store and singing in the choir. She also could see my father several times a day and keep an eagle eye on his care.

I have been thinking of them even more than usual lately as J continues her accelerating and inexorable decline from Alzheimer’s disease.

One of the many things I learned from my mother is the fierce advocacy needed to ensure quality care even in a good facility. What I learned from both my parents is that love endures even the greatest heartbreaks. I saw right in front of me the beauty of living a long committed life together.

My father, the doctor, would be happy to know how much I appreciate the heart: our living organ that beats from our earliest beginning in the womb until after our last breath. It was built to withstand the greatest pain and still go on loving, perhaps even more strongly than before.

Get Comfortable with Being Uncomfortable

I’ve had more time lately and have been considering signing up to run another half marathon for the Alzheimer’s Association team.  To help me decide, I’ve started training using the Nike+ Run Club app.  Yesterday, I did a guided tempo run narrated by distance running champion Emily Infeld.

A tempo run requires the runner to maintain her speed over a sustained period of time. This is not easy when you’re pushing 60, have never run fast to begin with, and have demonstrably been losing speed in the last few years. Emily’s advice was, “Get comfortable being uncomfortable.”  I pushed myself and finished my run, although at a slower pace than I had hoped.

It struck me that Emily’s advice applies to many situations, including dealing with a loved one with Alzheimer’s disease.  Moving my wife J into assisted living two plus years ago certainly was uncomfortable, although I have no doubt it was and remains the right decision.  Trying to relate to her when she can no longer speak in sentences, or even phrases: uncomfortable.  Dressing and feeding her: uncomfortable.  Agreeing to send her to a behavioral health ward for evaluation: very uncomfortable.

Many people deal with uncomfortable situations by avoiding them.  I would be lying if I didn’t admit that I also do that sometimes.  But I know from painful experience that real growth comes from living with discomfort, and I’m fortunate to know I always come out on the other side of it.

In caring for J, my discomfort is insignificant compared to the positive effect I still have on her life.  So here’s to getting comfortable with being uncomfortable.  Thanks, Emily.

(And thanks to AD for the photo.)

 

Step down

“Step down. Step down. See the lady fall over. Step down.”

These were the words of a young boy predawn on the top of Haleakalā, a volcano in Maui, after J tumbled while navigating stair-like rocks. The year was 2006, and I thought little of it at the time. In hindsight, however, and in combination with other early incidents, I wonder whether Alzheimer’s disease already had begun to erode J’s balance.

This anecdote came to mind after this weekend’s visit, when J so clearly has taken another step down, metaphorically this time.

I got to J’s continuing care retirement community in the late morning, and found her in the TV room of the memory unit where she lives, asleep in a chair. This is how I have found her each time I have visited during the last few weeks. She roused immediately at my touch and said, “Like it.”

At the suggestion of a staff member, I took her to get a belt. It was difficult to get J into the car. I literally had to lift her into the seat. (That’s one good thing about her weight loss….) Getting her to walk from the parking lot to the store was worse. She was shuffling her feet and I had to keep reminding her to lift them.

We made a quick stop at a grocery store, and J tried to wander out the door while I was checking out.

Our next destination was Wawa for a hoagie. I also bought J a bottle of water with a spout that required her to tip the bottle up and squeeze. After I held the bottle up and squeezed it for her, she finally got the hang of it. It reminded me of when we taught our toddler son how to use a straw.

She liked the hoagie and ate well, but she closed her eyes at points as though she was going to go back to sleep. She also usually looks out the window with interest when we drive around, but she intermittently closed her eyes in the car, too.

J is no longer acting aggressively, which is what sent her to a behavioral health unit a couple months ago. That’s good, but are her medications sedating her so much that she falls asleep? Is this just the progression of the disease? There is no way to know for sure.

I did speak with her psychiatric nurse yesterday. The nurse did not notice lethargy or mobility issues the last time she saw J last week. They are so apparent to me and to the staff members at the CCRC that it makes me wonder whether the nurse looked for anything other than aggressive behavior. In any event, the nurse promised to take a close look the next time she visits and possibly adjust J’s meds.

Where does that leave me? I just have to take comfort in the fact that J always tells me she loves me, that she enjoys whatever I bring her (especially if it’s a Wawa hoagie), and that our visits continue.

Free Peruvian Days

I recently got home from nine days of trekking in Peru. My daughter and I hiked the Salkantay Trail, a less traveled alternative to the Inca Trail to Machu Picchu. We scaled 15,000 feet, saw glaciers, learned about Inca civilization and ate better than any human being has a right to eat. (Who knew that avocado on a roll could be so delicious?)

Even better than the sights and sounds and time, however, was that the trip was entirely anxiety free.

Since J was diagnosed with Alzheimer’s disease in 2011, I have gone away on a number of wonderful vacations, but I have always been waiting for a shoe to drop.  When J still lived at home, I once got a call that J’s caregiver had lost her.  Since J has lived in the memory care unit of a  continuing care retirement community, I’ve been tracked down on a silent retreat over a medication issue.  I instantly recognize the CCRC phone number when it lights up my phone.  They don’t usually call with good news.

This trip was different.  There were days when no one could have reached me, even if they tried.  The cell network thankfully doesn’t reach remote areas accessible only on foot.  Moreover, the CCRC nurses knew to call our 27-year-old son if anything happened that required family input.  J’s brother served as our son’s back-up if the CCRC couldn’t find him.  I am grateful to them both.

I returned to caregiving mentally refreshed and confident that I can handle whatever comes next with J.  To the other caregivers out there, I highly recommend taking a respite.  There is even funding available if taking a few days off would create a financial hardship.  (See https://www.seniorly.com/respite-care/articles/caregiver-respite-grants-for-elderly-loved-ones)  You owe it not only to yourself, but to your loved one with Alzheimer’s disease.

Everything’s Gonna Be Alright

J is back at the memory care unit of her continuing care retirement community after a stay at a senior behavioral health unit because of aggressive behavior. (Sorry to those who know us and follow our progress through this blog that it’s taken me so long to post — it’s been a busy time with J’s placement, my move and changes in my work assignment.)

Last week, J seemed sedated, but I spoke with the psychiatric nurse, who backed her off some of her meds. This week, she seemed more like herself — or, more precisely, more like the version of J who was with us before the psychiatric ward stay.

Today was the first time I took J out since she returned to the CCRC memory care unit. We went on a couple of errands and then for soft serve ice cream.

This is the new normal: we can’t both have ice cream at the same time. I got a gelati, which is a concoction of water ice and soft-serve vanilla, with a twist of soft serve on top. J got a simple cup of chocolate soft-serve. What I didn’t anticipate is that J can no longer hold a cup level and eat at the same time. We were sitting on a bench, so J had nowhere to rest her cup and a significant amount of J’s ice cream ended up on her lap. I put my cup down to help her and plop! Mine fell over on the ground. Oh, well. I cleaned it up and kept eating. She needed a change of pants when she got back to the CCRC, but so what.

The ice cream place we went to was near our old neighborhood and, as we sat on the bench, she mumbled what sounded like, “I remember.”

J had a good time on our outing, yet in the car on the way back to the CCRC, she got teary-eyed. By the time we got back to her room, she was full-on crying. She curled up on her bed and let loose.

I got her up, telling her I wanted to show her something. Knowing that her facility only shows endless movies in the common room, I knew she hadn’t seen the royal wedding. A ten-minute video of Meaghan and Harry was all she needed to smile again. By the time I left, she was dancing with a staff member.

While this stage of J’s journey through Alzheimer’s world is painful for both of us, my partner, P, has encouraged me to find something good each stage. About the best I can say is that I feel good I am generally rising to the occasion. Also, although it’s not perfect, our kids and I are doing better working as a unit and making sure J gets regular visits.

One of the indignities of having Alzheimer’s and living at a CCRC is that there is no personal property. Someone else may be wearing your shirt or sweater today; you may have someone else’s clothes on tomorrow. When I went to get J ready to go out today, there was a shirt I had never seen before in her drawer. With my help, she put it on. In Jamaican colors, it said, “Everything’s gonna be alright,” the name of a Bob Marley anthem. And it will, because what other choice do we have?

I’m Still Standing Here

My partner of more than 30 years is diagnosed with Alzheimer’s disease. I cope.

She needs constant companionship. I figure it out.

She can no longer live at home. I find a suitable continuing care retirement community for her.

She needs to move to the memory care floor. We make the transition.

None of this prepared me, though, for the call from the CCRC strongly recommending that I transfer J to a senior behavioral health unit at a local hospital.

I probably should have seen it coming. Even before J moved to memory care, she hit a friend of hers with a newspaper. In recent weeks, her aggressive behavior has increased. She slugged a staff member. She got into a pushing match with another resident. She cursed a blue streak.

The first time the facility administrator recommended the behavioral health unit, I resisted. Surely they were overreacting. I authorized as-needed use of an anti-anxiety drug and hired a one-on-one aide. That didn’t even last a day.

Our daughter went to visit and saw J in a highly agitated state. At this point, her primary care physician, the facility administrator, the aide I had hired and our daughter all said J needed more help than her current setting could provide.

So I said yes to sending J to what I thought of as the psych ward.

Like many situations, the psych ward is worse in the anticipation than the reality. I was given the ok to visit this weekend (I previously had been discouraged because I was thought to trigger J’s aggression) and our daughter and I found the unit lovely. The staff is experienced and helpful. They are well trained and not phased by the anger and violence that often accompanies Alzheimer’s disease. The food is good and the activities plentiful.

J was happy to see us. She smiled and laughed.

In addition to lashing out when we’re not there, J has been crying and repeating, “She’s dead.” There is no way we will ever know for sure, but I think J is agitated now because she realizes that she is slipping away.

I know from all I’ve read that this is another stage we will pass through. The point of J’s stay in the behavioral health unit is to find a combination of medications that soothes her aggression without sedation. I’m confident that her care team will find the right combination and she’ll be able to return to the memory unit at her CCRC.

For myself, the soundtrack I always hear in my head is firmly trained on one of my choir songs by Janis Ian: “Another line, another year. I’m still standing here.”

Our mensch-y friend

A mensch, as anyone raised in a Jewish household with Yiddish literacy knows, is a good person. One who always does the right thing, who has integrity and honor.

https://upload.wikimedia.org/wikipedia/commons/f/f1/The_Mensch_on_a_Bench.jpg

This describes our friend, T. T had met J a few times before we knew J had Alzheimer’s disease, but they weren’t close. And yet, year in and year out, T continues to visit J regularly.

Even though T doesn’t experience the loss that those who knew J well do, it still can’t be easy. J’s cognition has deteriorated precipitously since T met her. I expect she goes because that is the right thing to do. T knows that by the time she gets to her car, J won’t remember she was there. Yet the time she spent will be a highlight of J’s day, and J will retain the feeling of being cared for.

So I give T my mother’s highest praise: “You are a mensch.”

Here is T’s report from a recent visit.

Hi A,

I went to see J today and I think it went really well!

I can’t remember if I always wore a name tag, but today I did.  I found J walking with a guy and went to greet her.  I don’t know if you know who he is, but his name is P.  He asked me my name and then sort of pushed away my jacket so he could see it and then read it.  J said, “I know,” which I took to mean that name and seeing me meant something to her. Who knows?

He told me his first name was asshole and his last name was something like fuck you.  He told me this totally matter-of -fact, not angry or anything.  I told him that was an unusual name.  Then he told me his other name.

Anyhow, we walked down the hallway — the three of us — till we got to the porch.  We looked out at the snow and trees and both seemed to enjoy looking out. P was able to say a few words, and as you know, J really pretty much can’t.  But she was taking it all in.  We stayed there for awhile enjoying the views and then walked back into the hallway.

P sort of drifted off somewhere and J and I continued to walk down the hallway.  I usually take her hand and she seems to like that.  We basically walked up and back 6 or so times, outside to the porch, looked at the view, saw a very small car ( one of the highlights), back inside.  She reached her hand out to me several times and seemed to like that. After awhile, I told her I had to leave.  We have a nice big hug and she said, ” the best.”

So that’s the news from my front.  Hope all is well. Look forward to seeing you guys soon. xo T

Sing Out, Louise!

I’ve always loved to sing.  Perhaps it started with my mother’s renditions of “Goodnight, My Love” in her high reedy voice, or my father crooning, “I’m Asleep in the Deep” and “Gaudeamus Igitur” in his basso profundo, rendered even lower if he had just awakened from a nap.

My adoration of the human voice amplified as I discovered musicals and then opera.  I can almost always summon the perfect song for the occasion (a talent my friends and family don’t always appreciate), and I know the words to nearly every great Broadway show, not to mention most songs by Gershwin, Porter and Rogers and Hart.

So why, you may ask, did I stop singing, except for the shower and religious services, in 1976?

Life got in the way.  It wasn’t a priority.  I was raising a family and building a career.

Then Alzheimer’s disease struck J, and much of the time I had away from work was consumed with care.  But life has changed. J has been living in a continuing care retirement community for the last 17 months, and she moved to the memory care unit in June.  I’ve sold our rambling house and now live in a relatively low-maintenance condo.  I still visit J often, and am always a phone call away from a crisis, but I do have more time.

So when a friend invited me to her choir concert last spring, of course I went.  Then I started thinking, why not me?

With four singing lessons under my belt, I tackled a demanding audition and, as of September, I’m a second soprano in the 80-woman singing group whose concert I attended.

I knew that singing in a group with demanding musical standards would be a challenge — and it has been.  What I didn’t know is that I was joining another supportive community, this one with a musical calling card. We sing to each other for birthdays. We sing to an alto’s mother when she is deathly ill. We sing to another’s sister while she’s in labor.

It is refreshing to belong to a new group where I’m not defined as an Alzheimer’s caregiver.  In fact, at an early rehearsal where we were in small groups telling about ourselves, I could say, “All you need to know about me is that I’m a second soprano and I’m happy to be here.”

I also underestimated the emotional release singing in a group provides. My heart soars when we let loose on an upbeat tune, and I’m moved to tears by our take on a tragic Spanish love song. 

Caregivers are always told they must take care of themselves, or they will lack the energy and ability to care for anyone else.  Joining the choir hasn’t solved all my problems by any means, but it has injected some weekly joy, and bolstered my strength to cope with the vicissitudes of my life. 

If you’re a caregiver in any capacity (and who isn’t?), consider this permission to do something that gives voice to the full range of your emotions and feeds your soul.