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.

 

7 1/2 weeks and counting

Shloshim was over more than three weeks ago. That’s the first 30 days of mourning in Jewish practice. As a mourning spouse, my obligation to say Kaddish every day has ended, and there are no restrictions on my activities.

It seems soon. J and I had 33 years together, 10 of them with the added partner of Alzheimer’s disease. Now I’ve had 30 days plus three and a half weeks and normal life is supposed to resume?

What is normal? In addition to losing J, I have ended one relationship and started another. For the first time since 1985, I am the only one on my lease. I have no one I’m obligated to care for. It is liberating and terrifying at the same time.

Of course I still feel the pain of the loss, but Judaism recognizes that the passage of time is able to ease and heal the pain. The shiva was the worst, the shloshim was very hard, and this stage is bad. In time, it will get better.

As time goes on, I remember the Alzheimer’s J less and the old J more. Last year, I asked our kids to take J to a Christmas light show she loved. They never got around to it. I was angry then, but now I remember the year when I couldn’t find J and called her. “Where are you?” I said in my concerned voice. “I’m at the light show,” J said with glee.

It is more than enough that she took herself there and experienced her own joy. I try to take from that example and enjoy what comes my way, regardless of what others think.

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.

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.

Fried or Grilled?

 

J and I are visiting her brother and sister-in-law for a couple of days. On Thursday night, we had dinner with our sister-in-law and her mother, E.  It was somewhat painful. E is 89 years old and suffers from dementia.  She is farther along than my 64-year-old wife, J, who has early onset Alzheimer’s disease.

E was not sure she had ever met us, although she certainly has several times in the 30-plus years her daughter and I have been part of J’s family. E asked repeatedly where we were from. We patiently answered every time. 

E also asked many times if J and I are sisters. J and I have been partners for 30 years and have been legally married for two. I saw no reason to try and explain that to E.  I’m sure it would have been confusing for her. 

I didn’t take any of this personally. I understand that E sometimes asks her daughter, K, if she is married. K and J’s brother married 30 years ago. 

My first reaction to this visit with E was it brought back the pain and hilarity of my father’s dementia. He had emergency heart surgery in 1999 and was cognitively impaired for the rest of his life. At one group restaurant meal, which is now part of family lore, he repeatedly asked, “Fried or grilled?” in reference to a calamari order.  “Fried, Dad.”  “Fried or grilled?”  “Fried, Dad.”  You get the idea.  For years after, the refrain, “Fried or grilled?” would cause me and my sisters to double over in laughter. Not in a mean way. Just sometimes we need to see the absurdity of a situation and laugh about it. 

My second reaction was to question if J will soon have the same diffculties as E remembering people and following conversations. J already doesn’t recall people she doesn’t see often. And she is often very quiet in group settings because she can’t keep up with fast-paced talk. I tell myself that the course of Alzheimer’s disease is highly individual, that none of us knows what tomorrow will bring, and that all I can do is my best to meet well whatever unfolds.

My final reaction is enormous love and respect for K. She is there for her mother, E, every step of the way. I have never heard her complain or express fatigue. She seems to have limitless stores of patience and love. I am lucky to have her as part of my family and support, and as an example to emulate.