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 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.

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.

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.