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.

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Like a Hawk

Supervising a loved one with Alzheimer’s disease at a memory care unit requires a level of vigilance I had not anticipated.

As an example, two Friday nights ago, I got a call from the nurse on duty at J’s continuing care retirement community letting me know that J was not feeling well.  The nurse told me she had a fever of 100.4, was listing to one side and that another urinary tract infection was suspected.  I was told that the nurse practitioner from her primary care doctor’s office wanted to send J to the emergency room at the closest hospital for evaluation. This would have meant that J, who has severe aphasia, would have been in an ambulance without an escort. Another nurse at the CCRC already had gotten a urine sample, and we were awaiting results.

I did not agree with sending J to the emergency room unaccompanied, which I think is a terrible practice. I told the nurse on duty I wanted to call the doctor’s office and speak to the nurse practitioner.  I saw no reason why J shouldn’t be prescribed antibiotics based on her symptoms, which clearly showed she had a UTI. The nurse on duty said he would reach out to the doctor’s nurse practitioner and have her call me.

The nurse on duty called me back and told me that based on my refusal to authorize sending J to the ER, the nurse practitioner had provided a prescription for an antibiotic. The nurse on duty asked my permission to order the drug from the CCRC pharmacy. I asked him when J would get the drug if it was ordered that way, and I was told it would arrive by the next morning.  I was planning to visit the next afternoon and could have used my insurance provider and brought the medication with me, but I agreed to obtaining the antibiotic from the CCRC pharmacy at high expense so J would get the medication as soon as possible.

When I visited around 4:30 pm on Saturday afternoon, J had not been given the antibiotic.  The nurse I had been talking with showed me on the computer that he had ordered it on Friday (in fact, he went out of his way to make sure it was sent immediately.)  He also showed me that it was received at the CCRC on Friday night.

When I spoke to the aide who administered J’s medication on Saturday morning, she said the medication was not on the cart when she gave J her meds. I later confirmed that the antibiotic indeed was on the cart.

So I was left to chase down J’s doctor to complain about the nurse practitioner’s recommendation to send J to the ER for no good reason and for her failure to call me, since she never called me back. (He apologized on both counts, once I chased him down. It took a couple of days to get a call back.) And I had to pursue the CCRC administrator to figure out why it took nearly 18 hours after the antibiotic arrived at the CCRC for J to get it. We have a meeting scheduled on Tuesday.

And this is a good facility!

This litany will be familiar to anyone who is or has been a caregiver. My point in recounting these latest frustrations is to explain how much effort goes into making sure even good medical personnel are doing their jobs. Someone has to watch them like a hawk. I happen to have advocacy training and am tenacious by nature. How do other caregivers cope?

How do I cope? I deal with each issue as it arises, take care of myself as best I can, give love with as much of my heart as is available at any moment, and accept the loving care of others when offered. Some weeks are easier than others.

How about Love?

Regular readers know I have a hard time when friends and acquaintances ask a certain question about J (who has Alzheimer’s disease). Well-meaning people often ask, “Does she still recognize you?” I understand that, for the person asking the question, it’s a way to gauge how far gone J is. For me, however, it’s painful and, at this point, there are better questions.

As I’ve written in previous blog posts, there’s no way I can really know if J recognizes me or not. She’s aphasic for the most part, unable to put a coherent group of words together. Occasionally she says my name, but I’m not sure she associates the name with me. Which is more painful: That she doesn’t know who I am despite our 30-plus years together, or she does know who I am and still has some concept of what she has lost?

These are hard questions for me to answer, so let me offer some alternates for anyone who wants to ask how someone with Alzheimer’s or other dementia is doing.

Is she happy when she sees you?

Does she still love dogs?

Does she still like to walk?

Does she still express love?

The answer to all these questions is “Yes.” And I’d add: “J’s doing fine.”

***

Last night at the Tony Awards, the Parkland High School students sang a very inspiring song called “Seasons of Love” from the musical, Rent. These lyrics helped remind me what’s important and that J’s doing fine.

“525,600 minutes, 525,000 moments so dear. 525,600 minutes – how do you measure,

measure a year? In daylights, in sunsets, in midnights, in cups of coffee. In

inches, in miles, in laughter, in strife. In 525,600 minutes – how do you

measure a year in the life?

How about love? How about love? How about love? Measure in love. Seasons of love.”

Despite J’s continuing decline, she still measures in love. That’s how I gauge how she’s doing. May we all gauge one another the same way.

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?

I’m Still Standing Here

My partner of more than 30 years is diagnosed with Alzheimer’s disease. I cope.

She needs constant companionship. I figure it out.

She can no longer live at home. I find a suitable continuing care retirement community for her.

She needs to move to the memory care floor. We make the transition.

None of this prepared me, though, for the call from the CCRC strongly recommending that I transfer J to a senior behavioral health unit at a local hospital.

I probably should have seen it coming. Even before J moved to memory care, she hit a friend of hers with a newspaper. In recent weeks, her aggressive behavior has increased. She slugged a staff member. She got into a pushing match with another resident. She cursed a blue streak.

The first time the facility administrator recommended the behavioral health unit, I resisted. Surely they were overreacting. I authorized as-needed use of an anti-anxiety drug and hired a one-on-one aide. That didn’t even last a day.

Our daughter went to visit and saw J in a highly agitated state. At this point, her primary care physician, the facility administrator, the aide I had hired and our daughter all said J needed more help than her current setting could provide.

So I said yes to sending J to what I thought of as the psych ward.

Like many situations, the psych ward is worse in the anticipation than the reality. I was given the ok to visit this weekend (I previously had been discouraged because I was thought to trigger J’s aggression) and our daughter and I found the unit lovely. The staff is experienced and helpful. They are well trained and not phased by the anger and violence that often accompanies Alzheimer’s disease. The food is good and the activities plentiful.

J was happy to see us. She smiled and laughed.

In addition to lashing out when we’re not there, J has been crying and repeating, “She’s dead.” There is no way we will ever know for sure, but I think J is agitated now because she realizes that she is slipping away.

I know from all I’ve read that this is another stage we will pass through. The point of J’s stay in the behavioral health unit is to find a combination of medications that soothes her aggression without sedation. I’m confident that her care team will find the right combination and she’ll be able to return to the memory unit at her CCRC.

For myself, the soundtrack I always hear in my head is firmly trained on one of my choir songs by Janis Ian: “Another line, another year. I’m still standing here.”

Showing Up, Being Present

The call came from the memory care unit yesterday afternoon. “J has been crying and calling for you.” My first reaction was, “Really?”  J has Alzheimer’s disease, and it’s been at least six months since she has known my name despite living together for more than three decades.

I have to admit my second response was far from laudable.  I’m in the middle of packing for a move next week, and the last thing I wanted to do was drive out to J’s facility.  My third reaction (with a little prodding from my current partner, P) was, she’s feeling alone; I vowed to care for her; and it’s the right thing to do.  So off I went.

I have to admit that I also was motivated by the time I didn’t drop everything, even though the little voice in my head said to, and J ended up alone in the emergency room.  And I have not felt good about visiting less often as time goes on.  Even at my age, live and learn.

No doubt J was happy to see me.  We sat on the porch for a while and looked at the budding trees and pictures of dogs on my phone.  She didn’t need more than that for contentment.

The last time I saw J I couldn’t resist asking her if she knew who I was.  After all, that is what most people ask me — “Does she know you?”  Then, J stammered out, “I don’t know who you are. . . but I love you.”  This time was no different; she couldn’t summon my name and didn’t seem to have any idea who I am.

As we sat, she matter-of-factly alluded to someone who had died.  “Oh, she’s dead.”  I wondered whether I no longer look like whatever image she has of me in her head.  Maybe she thinks that person is dead — because obviously she never comes and visits.

Or was she confusing me with her sister, who died in 2014?  Or her mother, who died around 1979?

Who knows, and ultimately, what does it matter?

What does matter is that J was suffering and I was able to alleviate her suffering simply by sitting with her so she knew that I cared. Even if I was only there for an hour, I strongly believe that the happy feelings J experienced during our visit lived on at least for hours and maybe even for days.

Everyone deserves love and attention when they are vulnerable.  This is particularly true of J, who faithfully cared for her own parents.  J went home twice: once to care for her father before he died, and once to care for her mother.  Tending to her mother particularly disrupted J’s life.  At the time, J had a job she loved, and a budding career as a newspaper reporter.  After her mother died and J wrapped up loose ends, time had run out on her leave of absence, and she was never able to get back into journalism.  But she never complained.  She always said the time she spent with her parents was among the most meaningful in her life.

There is great honor and dignity in caring for spouses and parents.  J’s cry, and the facility’s call has shown me that I can and should do better.  I don’t have to give up my career, as she did. I just have to show up and be present. J deserves no less.

Our mensch-y friend

A mensch, as anyone raised in a Jewish household with Yiddish literacy knows, is a good person. One who always does the right thing, who has integrity and honor.

https://upload.wikimedia.org/wikipedia/commons/f/f1/The_Mensch_on_a_Bench.jpg

This describes our friend, T. T had met J a few times before we knew J had Alzheimer’s disease, but they weren’t close. And yet, year in and year out, T continues to visit J regularly.

Even though T doesn’t experience the loss that those who knew J well do, it still can’t be easy. J’s cognition has deteriorated precipitously since T met her. I expect she goes because that is the right thing to do. T knows that by the time she gets to her car, J won’t remember she was there. Yet the time she spent will be a highlight of J’s day, and J will retain the feeling of being cared for.

So I give T my mother’s highest praise: “You are a mensch.”

Here is T’s report from a recent visit.

Hi A,

I went to see J today and I think it went really well!

I can’t remember if I always wore a name tag, but today I did.  I found J walking with a guy and went to greet her.  I don’t know if you know who he is, but his name is P.  He asked me my name and then sort of pushed away my jacket so he could see it and then read it.  J said, “I know,” which I took to mean that name and seeing me meant something to her. Who knows?

He told me his first name was asshole and his last name was something like fuck you.  He told me this totally matter-of -fact, not angry or anything.  I told him that was an unusual name.  Then he told me his other name.

Anyhow, we walked down the hallway — the three of us — till we got to the porch.  We looked out at the snow and trees and both seemed to enjoy looking out. P was able to say a few words, and as you know, J really pretty much can’t.  But she was taking it all in.  We stayed there for awhile enjoying the views and then walked back into the hallway.

P sort of drifted off somewhere and J and I continued to walk down the hallway.  I usually take her hand and she seems to like that.  We basically walked up and back 6 or so times, outside to the porch, looked at the view, saw a very small car ( one of the highlights), back inside.  She reached her hand out to me several times and seemed to like that. After awhile, I told her I had to leave.  We have a nice big hug and she said, ” the best.”

So that’s the news from my front.  Hope all is well. Look forward to seeing you guys soon. xo T