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. 

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.

Then and now


A provocative article in the Alzheimer’s Reading Room a couple of weeks ago raised the propriety of advance health care directives to allow withholding food and drink to someone who develops dementia.  (See link below.) The issue is whether a person should be able to choose, before onset, to end her life rather than suffer with Alzheimer’s disease or similar ailments. 

As an Alzheimer’s caregiver, honoring such directives would make me extremely uncomfortable. I approach the question from the point of view of what is best for the person with dementia at the time.  

My wife, J, was diagnosed with dementia in January 2011 and, in retrospect, was exhibiting symptoms well before that. Her ability to care for herself, understand and communicate continue to diminish. 

Yet, as I have written before, she very much enjoys life. Indeed, in some ways, she enjoys it more than ever because she has little to no stress. Gone are prior concerns about her job or caring for children or dogs. Now that she lives in a memory care unit, she doesn’t even have to worry about finding her way around her continuing care retirement community.  At her last doctor’s appointment, her pulse and blood pressure were those of a healthy 20-year-old. 

Go to visit and she’ll give you a big hug (even if she never met you before.)  Take her for a walk and she’ll delight in all she sees. Turn on some music and she’ll bop and sway. 

True, her old self might be horrified if she could see her current condition. But she can’t. 

Would it be fair to the current J to allow the former J to determine the value of her life now?  I think not. 

http://www.alzheimersreadingroom.com/2017/07/alzheimers-care-choosing-an-end-of-life-strategy.html?m=1

Memory care, here we come


When I last wrote, J’s continuing care retirement community had suggested she leave assisted living for memory care. My initial reaction was somewhat negative. I mostly was concerned that J no longer would have control over her own comings and goings because memory care residents can’t leave the floor without supervision. 

What a difference a couple of weeks — and a little bit of information and an open mind — can make.  The most important change came because I went back and visited the memory care unit. I hadn’t seen it since I first looked at the CCRC in March 2016. 

Memory is a funny thing, even in those of us with no impairment. I had remembered a much more institutional setting. The memory unit I visited, however, was very homey. It had only 24 residents, three full time staff members at all times and a dedicated activities director. I have often thought that there should be group homes for people with Alzheimer’s disease. This memory unit seemed pretty close to that ideal. 

Of course, no bed was immediately available for J, so we began to wait and the CCRC administration went radio silent, failing to respond to my phone calls or emails. Sadly, this is not unusual. 

What happened next was one of those blessings in disguise. Last week, J wandered off the CCRC campus and was found in the rain on a neighborhood street. Now that the CCRC was at risk for potential liability if J were hurt while she wandered, they swung into action. J started to spend days in memory care, returning to her assisted living room only at night. 

And then magically, a room opened up. She will move in on Monday. 

The move is not without annoyances. J has to be financially qualified for this new level of care, so there are forms to fill out, bank statements to provide, phone calls with my lawyer and a contract to negotiate. The actual move also is largely my responsibility, so I had to hire a mover on very short notice. 

These irritations are small, however, compared with my firm belief that J will be much happier in this new setting. 

Stay tuned. 

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.

 

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?

Three’s Not a Crowd

group-eating

J opened her door and I gestured towards our son, who travels for his work and so doesn’t see her that often. “T!” she exclaimed, in total recognition. T had come not only to visit J but to accompany the two of us to dinner.

I have written before about the difficulty of going out to eat with someone with Alzheimer’s disease who presents with aphasia. I am here to tell you that there is nothing wrong with bringing a friend or relative with you. It certainly makes it easier for me.  I have someone to talk with.

It also makes it easier for J. For her, it takes the pressure off. She can listen to the conversation on her own terms and chime in as she sees fit. Having more than one visitor reduces her stress.

The trick for me is paying attention, following subtle cues and giving J an opening when she wants to contribute, and not getting in the way of her make faces at the baby in the next booth if that’s what she wants to do.

It was great that J so clearly recognized our son, T, last week and called him by name. I’m sure that meant a lot to him. I’m not always sure she knows my name these days, although I’m certain she knows I’m someone important in her life. One time when our daughter and I visited a couple of months ago, she introduced us in the dining room: “These are my people.”  Our daughter and I still joke we are “the people of J.”

For many caregivers, no longer being recognized by name is devastating.  Failure to recognize also evokes discomfort among those without a close connection to someone with Alzheimer’s disease.  “Does J still know you?” is the question I’m most often asked.

This is not a great concern for me. I certainly hope J continues to recognize me, but whether she can retrieve my name is not in my or her control.  I simply hope to accept whatever comes and not  to react badly when friends inquire whether she still knows me. They are asking out of compassion.

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.”