From Alzwife to Alzwidow

The headstone has been selected. Pink Vermont granite with name, dates of birth and death, and the inscription, “Love people and tell them so.” The unveiling will take place in September.

It has been a long journey from the first time J didn’t remember a dinner engagement with close friends to diagnosis to day care to home care to assisted living to memory care, hospice and death.

I started this blog four years ago to give myself a place to express my thoughts and feelings as I traveled through Alzheimer’s World with J, our family and our friends. I also hoped to help and connect with other Alzheimer’s spouses for whom there are still precious few resources.

As time and new experiences have separated me from J’s illness and death, I have posted here less and less.  My transition from wife to widow is complete. While J always will be part of me, my life has continued and my time in Alzheimer’s World has ended. It is time to wrap up this blog.

I am fortunate that I was usually able to find growth, love and even humor caring for a spouse with Alzheimer’s disease. I hope I am at least a bit more patient and compassionate than before (although I still need occasional help in the compassion department and more frequent help in the patience department).

In this season of rebirth, where in the Jewish tradition we leave the narrow place (Egypt, slavery….) for the expanse, my heart is full. I remain close with my children. I will soon own a home of my own.  I have a wonderful new partner who I love truly, madly, deeply and who loves me.  I look forward to continuing to build our life together.  This is what J would have wanted.  Indeed, I am certain she didn’t leave me or our children until she felt we were ready to go on and truly live without her.

Thanks to all the readers who journeyed with me. If you have a spouse or other family member or friend suffering from Alzheimer’s disease, I hope you find support and some comfort along the way.  I hope you come out on the other end at least fully intact and perhaps wiser and stronger.

Ken yehi ratzon.  Let it be so.

 

Happy birthday, J

24 days into Sheloshim, the first 30 days after burial, and the day after J’s birthday. Yesterday was hard: checking in with our children and her brother, remembering birthdays past, deeply knowing there will be no birthdays future. This notwithstanding that J hadn’t been home for her birthday in a number of years.

J had lived in the memory care unit of a continuing care retirement community for the last two-plus years, so we have gone through the first birthday, anniversary, Hanukkah, New Year’s, Pesach, etc. without her at home. Now we do it again, with a whole new level of intensity. It’s not just that she is not physically at home, a home, by the way, that no longer exists because I sold the house where we raised our children and celebrated countless holidays and simchas. Nor is it just that Alzheimer’s disease peeled away layer after layer of her J-ness. Now she no longer walks the Earth. There is a finality that is undeniable.

Through the stages of Alzheimer’s disease, J was transformed. Through death, she continues to transform for me. And so do I.

In all my sadness I recognize that she is and will be with us in every step we take. This will allow me, at the appropriate time, to go on living the life I want for myself, which is ultimately what she would have wanted for me.

The End

Our beloved J passed away peacefully on Sunday night. She was surrounded by family and Ella Fitzgerald singing, “Someone to Watch Over Me.”

As we attend to all the details involved in arranging a funeral and shiva, we reclaim the stories, the laughter and the love.

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.

False alarm – sort of

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(Creative Commons Oldish Fire Alarm by bmb is licensed under CC BY-SA 2.0)

Yesterday I got a call from the memory unit where J lives that her blood pressure was dangerously low. I got her doctor on the phone, who gave me the impression that the end could be very near.

So I called our adult children, who live within five miles of me. We all prepared ourselves for the worse as our son, his girlfriend and our daughter piled into the car, heading to J’s facility.

When we got there, the aide had given J a tranquilizer and she was sound asleep. Her breathing was easy and she didn’t seem in any pain. Her doctor, who had not seen J in person before asking the aide to call and alarm us, changed her level of care from palliative to hospice. This was good because it meant a registered nurse was immediately dispatched to evaluate her.

A full evaluation was impossible because of the tranquilizer, but at least the nurse could assure us that J wasn’t dying last night and she sent us back to our respective homes.

Who knows what comes next, but thanks to hospice, we will have more than the word of an aide with little to no medical training and an on-call doctor who hasn’t actually seen the patient. If I sound angry, it’s because I am. What a system!

I also recognize that I’m angry because we are going to lose our sweet J sooner than I thought. So hug your loved ones for us and wish J an easy passage when it comes.

UPDATE:  J’s blood pressure returned to normal today.  Quite the emotional roller coaster.

 

Shanah Tovah 5779

“There is no calamity that does not have a kernel of blessing concealed within it….,” says the commentary to last week’s Torah portion.

So what are the kernels of blessing in having a spouse with Alzheimer’s disease?

First, despite some fits and starts, J’s Alzheimer’s disease has caused our family to get closer and pull together, especially now that she is in the most advanced stage.

Second, dealing with this disease teaches patience. Even something as simple as feeding J demands attention. I have to wait until she has thoroughly chewed and swallowed before offering the next bite.

Finally, there is blessing in the realization that all that is left for J is love. She freely gives it and receives it.

Although J has no idea that Rosh Hashanah starts tonight, may the same be true for us all in this new year.

The Beginning of the Beginning of the End

After a meeting with her doctor and the staff at her continuing care retirement community, we have decided to put J on palliative care. That means the doctor will withdraw all medications to manage any medical conditions (high blood pressure, high cholesterol, etc.), and the goal of her care will be to give her comfort.

Our children, J’s brother and I initially saw this as a death sentence and we have been grieving. After visiting J today, though, I’m not so sure. Of course I know that Alzheimer’s disease is a one-way ticket and J’s recent changes are precipitous.

Alzheimer’s disease is generally regarded as having seven stages. Examine a list of the conditions of Stage 7 and we’re there. Requires assistance with daily activities and personal care. Check. Unaware of recent experiences and her surroundings. Check. Lost the ability to walk, has increasing difficulty communicating, and is vulnerable to infections. Check, check, check. At this point, J sleeps much of the time and is uninterested in most food.

But when our daughter, L, and I visited today, J was much more engaged than she has been in weeks. L got J to eat one and a half cups of chocolate pudding — a huge accomplishment. J smiled. Repeatedly. We hadn’t seen that for a while. J swayed to Aretha and was entranced by our reading aloud from the first Harry Potter book.

Activating palliative care means that J gets additional services: a registered nurse will visit her 2-3 times a week, and a speech therapist will evaluate her ability to swallow. (Difficulty swallowing is a symptom of the end stages of Alzheimer’s.)

The cynic in me wonders whether the move to palliative care is all about insurance. Since the doctor ordered this level of care, there is no charge for the added services, for which I’m grateful.

J’s rally and the increased resources have not kept my heart from breaking at the realization that, while the end isn’t tomorrow, or next week, it is closer than ever.

Rabbi Simon Jacobson teaches that “there is nothing as complete as a broken heart.” As he has written, “[P]aradoxically, the more broken you are now the more whole you have the chance to become.” @meaningfullife

If that is so, the kids, J’s brother and I have an enormous chance to become whole.

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.

How about Love?

Regular readers know I have a hard time when friends and acquaintances ask a certain question about J (who has Alzheimer’s disease). Well-meaning people often ask, “Does she still recognize you?” I understand that, for the person asking the question, it’s a way to gauge how far gone J is. For me, however, it’s painful and, at this point, there are better questions.

As I’ve written in previous blog posts, there’s no way I can really know if J recognizes me or not. She’s aphasic for the most part, unable to put a coherent group of words together. Occasionally she says my name, but I’m not sure she associates the name with me. Which is more painful: That she doesn’t know who I am despite our 30-plus years together, or she does know who I am and still has some concept of what she has lost?

These are hard questions for me to answer, so let me offer some alternates for anyone who wants to ask how someone with Alzheimer’s or other dementia is doing.

Is she happy when she sees you?

Does she still love dogs?

Does she still like to walk?

Does she still express love?

The answer to all these questions is “Yes.” And I’d add: “J’s doing fine.”

***

Last night at the Tony Awards, the Parkland High School students sang a very inspiring song called “Seasons of Love” from the musical, Rent. These lyrics helped remind me what’s important and that J’s doing fine.

“525,600 minutes, 525,000 moments so dear. 525,600 minutes – how do you measure,

measure a year? In daylights, in sunsets, in midnights, in cups of coffee. In

inches, in miles, in laughter, in strife. In 525,600 minutes – how do you

measure a year in the life?

How about love? How about love? How about love? Measure in love. Seasons of love.”

Despite J’s continuing decline, she still measures in love. That’s how I gauge how she’s doing. May we all gauge one another the same way.

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?