A Good Death

My last-living uncle died last month at 92. He exemplified the Greatest Generation. Drafted at age 19, he fought in the Battle of the Bulge. After the war, he finished his college degree and returned to the small town where he grew up to run the family hardware store. He was a large part of the glue that held his community together, and his family and town returned his devotion with love.

Most relevant to this blog, he died a good death, lucid to the end.

I don’t begrudge him this. And I am happy that my mother, his sister, also possessed a clear mind to her final day, even requesting her last cup of coffee from my son.

Part of me, though, deeply regrets that my father was not accorded that dignity, and that J is long past the point where she will die as the same person who lived.

One of the most awful aspects of Alzheimer’s disease is that it robs the family of the afflicted person long after that person has any awareness of who she was.

Spending time with my extended family after my uncle’s death leaves me praying for good deaths for everyone close to me. It also reminds me that while many of us have little to no control over how we die (although that is changing), we have almost complete control over how we live.

I have been studying a Jewish mystical text, the Zohar, with a friend of mine for the last few years. We have no idea what we’re doing. We don’t read Hebrew and can’t begin to unpack the dense readings. But the teachings often still resonate. I recently read about Abraham’s kindness and generosity. The commentary concluded: “The spiritual principle here is that each time we do for others and those in need, we actually do it for ourselves. It’s a gift to be able to help others….”

My uncle lived this principle. I hope to take that gift from him and do my best to live a good life, hoping it will lead to a good death — many years from now.

To Life!

Like a kid with a scab to pick, I couldn’t stop myself from asking The Question: Do you know who I am?

“Gggrwhhh.  Bltxfthhhhh.  Pthrrrx.  Lawyer.  Zhgggfff.  Gluuchhhh.”

A few minutes later, I casually dropped, “Do you know my name?”  J made direct eye contact and said matter-of-factly, “I really don’t.” “My name is A.”  “Of course.”  “Are you married?” “No,” she said, with a hint of incredulity. 

So the moment has happened: J has only a tenuous grasp on who I am after 30-plus years together. Such are the ravages of Alzheimer’s disease. 

Oddly, my heart did not break. This is just another milepost on the Alzheimer’s road. 

Instead, my heart turned to last week’s Torah reading, the final portion before starting the new year. Moses is giving his last instructions before the Israelites will cross into the Promised Land, a place he will not go. Instead of expressing bitterness, he lays before the Israelites the choices they must make to either embrace blessings or curses. “I call heaven and earth to witness against you this day: I have put before you life and death, blessing and curse. Choose life — if you and your offspring would live.”

As we all enter 5778, I wish for each of us to choose life. J still does, and so do I.

Love endures II

Having blogged now for more than two years and 100 posts, I worry about repeating myself. But this bears repeating. 

Love endures.

As I reported in my last blog, I’ve stopped taking J out for meals and have instead started taking her on errands. The trip to Discount Shoe Warehouse went well. She was able to express preferences for the shoes she wanted and we left with two new pairs.

Next up was a trip to the dollar store. My workplace is collecting supplies for a local school. (Don’t get me started on the need to donate basics like pencils and paper to public schools.)  J taught 4th and 5th grade for 12 years before her Alzheimer’s diagnosis, so I thought picking items to donate would engage her. I was wrong. She was fine with being at the dollar store, but she had no interest in shopping for gifts for children she doesn’t know. I don’t think she understood what we were doing.

That said, as often is the case, she clearly enjoyed going out with me and our daughter. Does she know who we are?  I think so, but who knows?

She has, however, gotten more loving.  She was always a hugger. Now, the hugs come even more freely. And not just to me or our kids or friends who visit. She hugs the staff people at her continuing care retirement community. She hugs her doctor. Given half a chance, she would hug the check-out person at DSW. There is also a sweetness that was hidden before.

Our love has changed. The eros is long gone. J has been unable to be an equal partner for more than seven years. We live separately now and largely have separate lives.  Our love has changed, and yet, it is still strong.

As one of my rabbis wrote this week, “Judaism teaches that a soul is never damaged. The body perhaps, the psyche perhaps, but the inner core of goodness that is the soul never. The essence always remains intact.”

As the disease progresses, J’s inner core of goodness is more manifest. Love is the only possible response.

Small world, isn’t it?


One of J’s regulars recently reported that J said she wanted to go on a trip. I raised it with her and got the puzzled look and the incredulous laugh. “Where would I go?”

That got me thinking about how small J’s world has become. J went away to college and moved south for work and north for my schooling. She traveled to Central America, Europe and Asia. She often went to New York. Now, a trip means going to the local coffee shop. A long trip is to the arboretum or the zoo. 

I’ve confronted this reality while packing for my upcoming move from a 5-bedroom house to a condo. Do I keep her bathing suit?  Will she ever go to the beach again?  No, and no.  Those days are gone now. It bothers me much more than it does her. She is content in her world with its current borders.  And I filter my decisions through her doctor’s question, “Who is this for?”

In Jewish time, we are counting the Omer.  This means we count each of the 49 days between the second day of Passover and Shavuot, the holiday that celebrates the giving of the Torah. Each day possesses a spiritual quality. Today is Netzach of Netzach, or Endurance in Endurance.  One of my rabbis says in response to today, “We have the capacity to endure much more than we can imagine, and to prevail under the most trying of circumstances.”

This is comforting, although there is no prevailing over Alzheimer’s disease. For caregivers, there is only endurance and the capacity to enjoy small moments in the small world. 

J had a good time at our last coffee shop outing. She especially enjoyed watching a little girl zooming around the establishment. J’s smile was big. 

Which brings me to another of my sages who wrote, “Small world, isn’t is?  Small and funny and fine.”

A gift of apples

This is the first Rosh Hashanah where J has been living at a continuing care community because of her advancing Alzheimer’s disease. At her doctor’s recommendation, I did not bring her home for our usual holiday dinner. The dinner itself was joyous. Both our adult children were there as well as friends so close that they are family. We said the traditional prayers and discussed issues of the day. We laughed and ate and drank: gefilte fish, brisket, kugel, challah, apple cake. Washed down with wine. 

I missed J most in the kitchen. She was not there as I chopped the fish or kneaded the bread. Grating onions was not the only cause of my tears. 

I didn’t get the opportunity to visit J until last night. I brought her a bag of Granny Smith apples. She really lit up. “Oh!  These are my best,” she said. We washed an apple for her.  She bit in with a resounding crunch.  She giggled. Her eyes blazed. 

The metaphor of the High Holidays is that the Book of Life opens on Rosh Hashanah and remains open until the last moments of Yom Kippur. During the High Holidays, we repeatedly say a prayer called Unetanah Tokef.  It underscores that it will be written who will live and who will die in the coming year; who by fire and who by water; who by sword and who by beast; who by heart disease and who by Alzheimer’s disease. Only teshuvah (returning,) tefilah (prayer,) and tzedakah (righteous acts) averts this harsh decree. 

I still feel intermittent anger towards G-d. How could G-d take the vital, fiercely funny and intelligent J and turn her into someone who can only play dominoes with assistance?  

Jews also say a daily prayer, acknowledging that the soul we were given is pure, no matter what.  When I can practice teshuvah, the turning the tradition requires, I can see that J is returning to her pure essence. What a great deal we can learn from the way she eats an apple. There is unalloyed joy in the smell, crunch, juice, taste. Such laughter in her enjoyment. 

May all beings experience such joy in 5777. 

Memories

I’m spending a week at the beach without J.  It’s the same beach where we have gone for the last 25 years or so. I was on automatic when I made the reservation back in January. It didn’t occur to me that it wouldn’t make sense to bring her, even though it was so difficult to have her here last year that I called a friend in tears and begged her to come down and help me. 

One of the rituals of being here has been to frequent a particular ice cream shop with the best frozen custard I have ever had. It is thick and rich and has none of the artificial flavor of most commercial custard.  Our kids grew up chatting with the proprietors, Tom and Joe. Last year, Tom wasn’t there and I inquired of Joe. Tom, who couldn’t have been older than his early 50s, had died of a massive heart attack. This year, Joe showed me his scar from heart surgery he had during the off season. “I shouldn’t be alive,” he said. 

This, combined with J’s inability to come to the beach this year because of the advancement of her Alzheimer’s disease, underscored for me how quickly life can change.  We can be so fragile and our futures can be shattered in a moment. 

We are in the Jewish month of Elul, when we take stock of our lives and prepare for the High Holidays. We ask ourselves questions about what serves us well and what we want to change. We have full faith that we can break old patterns.  We are reading the last book of the Torah, Deuteronomy, where Moses retells the story of the Exodus, and what is added is love.

 In this coming year, may I turn towards love, both the giving and the receipt. May I extravagantly let all the important people in my life know what they mean to me. As J’s mother always said, “Love people and tell them so.”

Letting go


I’m on a Jewish mindfulness retreat in New Mexico where I’m not supposed to be in contact with the outside world.  It’s Shabbat, a day when we particularly are encouraged not to look at electronic devices.  It’s early evening.  I glance at my phone.  I have six messages from my wife, J, who has Alzheimer’s disease and who recently moved to a continuing care community.  I can’t help myself.  I listen.

1:18:33 PM:  “I need help.”

1:20:04 PM:  “One.  One.  Yes.”

1:23:31 PM:  “I … hemm…uh…it’s…uhhhh….”

1:31:16 PM:  [No sound.]

1:56:11 PM:  [Unintelligible background noise.]

5:50 PM:  “Oh, fuck.”  [Unintelligible.]

It is two hours earlier for me than in the East, where J and I live.  The latest message is two hours stale; the earlier messages are almost seven hours old.  I launch into action anyway.  I call the nurse’s station.  The certified nursing assistant on J’s floor doesn’t pick up.  I call the main desk.  The security guard promises to get the CNA to answer.  I call again in five minutes.  The CNA lifts the phone and immediately puts me on hold.  She eventually comes back and I explain the messages from J.  She says she has already gotten her ready for bed and everything was fine.

I nonetheless call J.  She miraculously picks up.  (She often doesn’t.)  She is clearly frustrated about something.  She says it’s in her hand. “Is it the remote?” I ask.  “No.”  “Is there a problem with the radio?” “No.  It’s in my hand.  I only have three.”

I have no idea what she is talking about, and I am getting upset.  I’m 2,000 miles away and I feel powerless.  One of the caregivers who took J on outings when she lived at home is getting together with J the next day.  I text E and explain that J needs something, but I don’t know what.  I ask her to investigate.

E texts the next day and says J greeted her with, “I have a problem.”  J showed E her dresser drawer and that she only had three Depends (even though I left her with a large supply.)  J said to E, “A lot more!”  So E made a CVS stop and all was well — except that I had spent an agitated evening because I thought I needed to swoop in and save the day.

So what is the lesson from this scenario?  I have to accept that I am not J’s full-time caretaker anymore.  I have entrusted her to a community I fully vetted, and I can’t fix everything.  One of the joys of living at the CCR for J is that she has greater control than she did at home.  I have to let her learn to solve her problems, which she obviously would have done without me if I had been able to trust her.  It’s a lot like having children and letting them go.

Many of my friends and family said the transition from home to continuing care would be harder for me than for J.  They are right.  Like so much in life, it is a process.

 

Why Alzheimer’s? Why us?

In the six years since J’s diagnosis, I have spent no time wondering why J got Alzheimer’s disease. It just is. 

I do, however, find myself asking today, “Was it not for this very challenge that I am here at this place at this time?”  (although, as you know, I am on vacation in China on a much needed break from caregiving….)

This is the Jewish question of the moment as we celebrate Purim, the holiday where the beautiful Esther becomes queen at a time when the king’s henchman wants to kill all the Jews. Esther comes up with many reasons not to intervene until her uncle says, “If you are silent and you do nothing at this time somebody else will save the Jewish people. But who knows, was it not for just this moment that you became a Queen, with access to King Achashverosh in the royal palace?”  Queen Esther of course speaks up and saves the Jews. 

For those of us living with spouses with Azheimer’s disease, may we remember that this is the challenge we are called to meet at this moment.  May we be blessed with patience and strength. 

Tip of the keyboard to Rabbi Sacks, whose weekly email got me thinking in this direction. 

Trust the Unfolding

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The social worker has come and gone and we are waiting for J’s level of care assessment.  In the meantime, I have been looking at continuing care communities.  The process is excruciating.

A continuing care community is a place that has all levels of care, including independent living, assisted living, a specialized dementia unit and skilled nursing care.  This is important because J and I only have enough money for two to two-and-a-half years of private pay.  After that, J will be on Medicaid, and we need a facility that will not kick her out when that happens.  We live in a large urban area and this is not easy to find.  So far, we only have two options.  I have looked at one and will look at the other tomorrow.  As with most things in life, they each have their plusses and minuses.

On the advice of a friend who is a therapist at a continuing care community, I broached the subject of moving with J.  The response was not good.  Hence, the excruciating nature of the exercise.  And yet, I am pretty sure keeping J at home is not the best thing at this stage.  She has various caregivers three days a week, and goes to day care two days a week.  She seems to very much enjoy the day care, and we could increase her days there.  But we are getting to the point where I worry about leaving her alone at all.  I have found the key in the door multiple times.  I worry about her letting someone in when she’s alone.  I worry about her being bored.  And she resists having more at-home help than we already do.

Surprisingly, both of our children think it’s time for her to transition to a residential setting.  They think she will ultimately be happier there, and I’m sure they worry about me.  So we will see what the assessment says, and take it from there.

In the meantime, it seems that our son’s girlfriend is going to take our seven-year-old dog.  As I have written in a prior blog post, J can no longer take care of him, and it is too much for me to take on (although I have now been doing it for a while).  That will be a great weight off my shoulders.

And I am leaving on a long-planned two-week trip to China with my sister in three weeks and my plan for J’s care has just fallen through.  I am working on alternatives.  At least I have three weeks to tee things up.

Is it any wonder that I, who am invariably calm and in control, have been anxious and on the brink of tears for the last few days?

One of my rabbi’s stock phrases is to “trust the unfolding.”  I have been grabbing onto that thought and also dipping into Psalms, which I love.  I am in the process of reading the Psalms in order.  Today’s reading ends, “As for me, I am lowly and needy.  G-d, O hasten to me!  My help, the one who frees me You are.  Lord, do not delay.”  (Psalm 70:6-7)  May it be so.

 

Homeward Angel

 

Blake_jacobsladder

Last week’s Torah portion included Jacob’s dream of a stairway from Earth to heaven with angels going up and down. It is significant that the angels start here on Earth.  Sage Torah commentators consider that authority that angels dwell among us.

This resonated for me this week because my sister, D, is visiting for Thanksgiving. Unprompted, she offered to stay with J tonight so I can go out.  I have known for many years that D is one of my angels.  I have rarely felt it as much as today.  In these days before Thanksgiving, when we are enjoined to express gratitude, I am very thankful for my sister.