Beer is proof that G-d loves us

I belong to a Facebook dementia caregiver group where a controversy has been raging about whether to let a person with Alzheimer’s have a beer. It’s a controversy I can’t fathom. The person with Alzheimer’s is drifting away, maybe quickly, maybe slowly. My view is, why not?

I eat healthy, but if J with Alzheimer’s disease wants fried Oreos, why not? She wants ice cream? Go for it. She wants a beer? Have at it.

Indeed, at our old watering hole, I asked for a plastic cup to make it easier for J to enjoy her beer. The waitress, whose mother has early Alzheimer’s, delivered it in a styrofoam cup with a lid and straw. After all, it is the night before Independence Day.

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?

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. 

No White Coat for J

White-Coat-Ceremonies

Our daughter, L, has wanted to be a doctor since at least grade school.  Her road to medical school was not an easy one, but she made it.  Her white coat ceremony should have been a day of unalloyed joy for her and me — and J.

It was a wonderful day and I am so, so proud of our daughter, but J wasn’t there.

Eight years into our struggle with Alzheimer’s disease, there is no doubt that was the right call.  J couldn’t have sat through the 45-minute ceremony, or understood what was going on.  (For those who aren’t familiar, a white coat ceremony happens early in the first year of medical school.  The students receive the white coats they will wear throughout their training and are socialized about the importance of patient-centric care.)  J could not have expressed her pride and joy, or chatted with L’s new colleagues and their parents.

Losing the person who was is very hard.

When someone in my life dies, I always have that realization that the world is going on without her; that she doesn’t know the ways the world and those in it are changing.  The same is true of J.  She doesn’t really know what’s going on in the world (although she does say, “Trump!” with a disapproving look on her face if others are discussing politics); nor does she know what’s happening in my life or the lives of our children.

The only consolation is that J has a new life, too.  I’m told she attends the daily morning meeting at the memory care unit where she lives and thinks she’s one of the paid caregivers.  Her photo hangs in the hall under the label, “Most Caring.”

And J’s lack of consciousness about the changes in her loved ones and the world is a blessing because she doesn’t feel the loss we feel.  

 

 

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.

The Perfect Visit

the-visit

A couple of posts ago, I came down hard on people who don’t visit loved ones with Alzheimer’s disease.  My motivation was mostly to share that, at that moment, I felt quite alone in my care-giving responsibilities instead of being part of a team.  It wasn’t a call to arms, and yet, boy, have my friends and family responded.  J has had more visitors in the last month than I ever remember before, and I am very grateful.

I also tried to communicate that a visit is not only joyous for the person with Alzheimer’s disease, but it can be enormously satisfying to the visitor as well.  Our friend, TP, who visited last weekend, says it better than I can.  Here’s her report:

I wanted to share with you my visit with J today.  It was pretty perfect. I stopped by around 10:30 just to visit. I was on my way back from a tennis game so B wasn’t with me.  When she opened her door, she  was very happy to see me. I wasn’t sure what we’d do, but I had her show me the terrace. Then I thought maybe we could go out for coffee. She said, “Great.” So we went to the Dunkin’ Donuts.  Once there, I saw there weren’t tables but there was a little bar-like area where you could stand and look outside. So we did that. She was happy with her coffee. It was nice and sunny.  Then all of a sudden, a flock of birds sailed by. That was cool and J was happy to watch them.  I showed her some photos from this nice site ( Planeta tierra) with beautiful birds and animals.  She loved the photos.  It was very pleasant. So we finished our coffee and walked outside ( in the freezing cold).  There was a dollar store and I asked J if she wanted to go and she said, “Sure.”  So we did.  Cruised around. I asked her if she needed anything. No answer. But she stopped at look at some stuff , said something I didn’t understand and we left. But outside she turned back and said (or motioned) something like teeth. So we went with toothbrush or toothpaste and bingo — toothpaste.  So we went back inside, found the toothpaste.  She wanted a 2-pack so she would have a spare (more or less got that from the non-verbals). We got the toothpaste and it was a total win!  She was happy, we had a nice time, and I got her back to the warmth.
Our son, T, and I visited later the same day.  J didn’t remember the time she spent with TP, but that made it no less precious.  She did remember the toothpaste.  In fact, she happily took me into the bathroom three times to show it to me.
T and I had brought the game of Life with us and figured one of us would team up with J.  It’s an old set, and when we opened it up, the spinner was missing and we couldn’t play.  J, who often has trouble with verbal communications now, made us understand that it didn’t matter.  “I just like to spend time with you,” she said clear as a bell.

 

The Downward Spiral

old-brick-stone-metal-spiral-staircase

The administrator at J’s continuing care retirement community left a cheery message, “There is absolutely no emergency, but when you get a chance, please give me a call. I want to shoot something by you.”  Despite the casual tone, I have been on this earth long enough to know it is never good when the CCRC administrator calls. I returned the call.

I was told that J, my 66-year-old wife with Alzheimer’s disease, has been exhibiting some “bizarre” behaviors. She had walked stark naked to an outdoor balcony. She was hiding things in the library. She had snatched medical papers from another resident as he walked down the hall and looked perplexed when he said they were his. The administrator didn’t seem overly concerned. As we talked, it became clear that she was obligated to tell me that J’s primary care doctor had been contacted. The administrator suggested tests to determine whether J had a urinary tract infection.

I emailed back and forth with the primary care physician, and I called her psychiatrist/neurologist. Neither thought any tests were necessary. This is not a UTI. This is J’s path through Alzheimer’s disease.

The report from the CCRC administrator was somewhat consistent with my recent experience.  The last time I saw J, she was not particularly engaged. She didn’t seem to recognize the friend who was with us. She stared across the table at me. This was before Election Day, and she brightened up only at talk of the then-upcoming election.

On Sunday, I took her to brunch for her birthday with our two adult children. She perked up at the offer of a Bloody Mary but otherwise had a fairly flat affect. We went back to our daughter’s apartment for cake.   We had taken an Uber, and J had gone for the front seat. During the ride, she looked back at me and our daughter and looked alarmed. She extended her index finger and mimicked a gun. Was our Uber driver packing a pistol?  When I asked her after we got out of the car, she exclaimed, “No!”

At our daughter’s apartment, she got a little agitated and said, “It died.”  She motioned like a machine gun – rat-a-tat-tat, and again said, “It just died.” “Are you talking about the election?” I asked. She had firmly and enthusiastically supported Hillary Clinton, and I was afraid the results may have depressed her. “No!”  I have no idea how this popped into my head. “Are you talking about your hair dryer?” “Yes!”

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J was so happy to be understood. It must be enormously frustrating for her to have thoughts and not be able to express them. Our daughter exclaimed, “That’s amazing. It was just like charades.”

The afternoon ended well, after I bought J a new hair dryer.  I know that J will continue to change and we will have to adjust. So long as a Bloody Mary or a hair dryer can bring a smile to J’s face, we should be grateful.

Yep, that’s my Aunt J

boomerang-kayak
This is a guest column written by J’s niece, who recently visited:
On Sunday, visited my Aunt J, who is now in an assisted living facility, living in Alzheimer’s. I say “living in” because that’s what it is. She is IN a place of her own and no one ever knows whether it’s distressful for her or devoid of any stress and worry….do memories keep us on edge and more aware of ourselves or can not having many of them lighten our cerebral load? Who knows. There’s many arguments about forgetting things that we wish not to remember but who of us WANT to suddenly be robbed of that?
I haven’t always maintained a close relationship with my Aunt J. I didn’t have a difficult one, either. She was still living at home with my grandparents, finishing high school and entering college when I was just a little person, 5, 6,7, also living with my grandparents. My Christmas presents would be under the tree right next to hers and Christmas mornings, we would all be together, unwrapping our presents…me with my Chrissy and Velvet dolls, her with her clothes and books more befitting a young woman….
I do remember that I liked my Aunt J. I remember a lot of laughter in my grandparents home as a young person. She looked out for me like a bigger sister would and she always had a calming persona. And smart. Even then, at a young age, she was so smart and I could sense it.
I remember we, my grandparents and I, visited her in Boston where she attended Wellesley. I remember kayaking with her and I remember being in awe of her, so young and pretty with her long, brown hair, no makeup but fresh pretty face and smile. She was a woman I looked up to. And then, poof. Our lives separated. I was shipped off to live with my father and his new wife and just didn’t see J for such a long time. Here and there, sporadically, but for the most part, I didn’t see her.
Until I turned 13 or 14. I was troubled. My father and his wife were in a dysfunctional relationship. I, at that young an age, recognized my father’s philandering going on and was the emotional punching bag for his wife. She was miserable and she hated that she was left at home with her husband’s child while he was off doing god knows what or who. I acted out. Ran away a couple times and found out later that my Aunt J, learning of this somehow, approached my father and mother (her sister) and offered to try and help me. She offered me a home in Charlotte, North Carolina where she was living with her partner, A. I wasn’t part of the conversation or decision-making, I just know off I went to live with J and A in Charlotte.
It was a very cute little Cape Cod with cool stuff in the house, lots of good cooking and constant stream of the McGarrigle Sisters, Joni Mitchell, Melanie and other great chick music. I went to school and plugged along, but ended up presenting teenage problems for them too that they couldn’t handle. So I was shipped off again, back to my father who was leaving for Athens, Greece to do a two-year stint.
I never felt like my time with J and A was regretful, I have fond memories of being there. And yesterday, while I was visiting her, I told her a few stories about my stay with her, things that if she were completely cognizant, she would have chuckled at too, but alas, she does not have those memories stored away. She truly did not entirely know who I was so she couldn’t put the story together in her own mind’s eye.
She and I looked at photos she has in her room of her parents and her siblings. She pointed to my mother in the photo and said a couple times ,“She’s dead. she’s dead.” I broke. I began to cry and tell J I missed my mother and she just stared at me blankly. Again, is it better to remember and feel the pain of loss or was she better off for being so matter-of-fact about it and not FEELING the pain of it? Who knows.
I can only hope that before this nasty disease that robs us of our memories settled into my Aunt J, that I provided HER with some decent memories of me. I hope she had no regrets about taking me into her life for a period of time and trying to help me. I hope she at some point realized that she absolutely did the best she could and it wasn’t long into my adulthood that I recognized that about her and appreciated that about her. Truth be told, that little bit of time I was with her, I was safer. I was happier. It was the respite I needed.
J and I walked around the neighborhood yesterday, and I chattered on and on about stuff, catching myself a couple times asking “do you remember…..?” which I realize wasn’t fair. But she was the same forthright person she’s always been and would give me a firm “no.” I told her stories about my grandchildren, told her about my job, asked her about her children and her wife. She wasn’t able to finish too many sentences but she wanted to converse with me. She held my hand a couple times which I’d like to believe was momentary recognition………or just gratitude that I was there, a visitor.
She looks like the J I’ve always known. She was warm and pleasant and towards the end, as we sat in the wooden gliders on the large porch of this place, she suddenly raised her fist and said “Hillary!”
Yep, that’s my Aunt J.

Inside the Sandwich

J and I had lunch on Saturday with an old friend who is caring for her friend, F, with Alzheimer’s disease.  F has been in residential care for four years. She has “graduated” from assisted living, also known as personal care, to a dedicated Alzheimer’s floor. She can no longer dress herself.

Then, on Saturday night, I had dinner with old friends of one of my friends.  P, the husband, has early onset Alzheimer’s disease. He hung out with us while his wife was off officiating at a wedding. He has some word retrieval problems and said his children are much younger than they actually are, but he speaks in complete sentences and know about important future events, including one of his children’s weddings and an upcoming trip to Australia and New Zealand.

These visits made me feel like the inside of a sandwich, surrounded by where J and I have been and, sadly, where we are going.  J can still dress herself, but she has no concept of the past or the future.  I recently mentioned that her birthday is coming up.  Her response was, “Really?”  Alzheimer’s moves in only one inexorable direction.  There is no getting better.

That realization, which I have again and again, brought childbirth to mind. Twenty three years ago, I delivering our daughter without drugs.  At each moment I considered whether I could stand the pain I was feeling then. If the answer was yes, I went on without the epidural. (Fear of a needle in my back was also a big motivation.)

In my current role as an Alzheimer’s caregiver, I am taking the same approach. The pain is always there, whether it is on the surface or hidden in deep recesses.

And then I look up and see the shimmering sliver of the moon.  Or the pink sky behind the sycamore trees I pass every morning.  And I know that J still appreciates the beauty all around us.  So I stand the pain.  What choice do I have?