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.

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Errand Girls

 

As regular readers of this blog know, I have struggled with how to make visits with J fun for both of us as her Alzheimer’s diseases has progressed.  Visiting alone can be tough, especially since J’s verbal abilities have diminished.  Going out to eat is losing its charm as there are only so many games of dominoes we can play, or cute animal videos we can watch.

I have found a new go-to activity: running errands.  Last week, in desperation to get some things done, I took J with me on my appointed rounds.  I put swing music on the radio.  And off we went: to take CDs to the music store to sell; to Goodwill; to the dollar store; and finally for soft-serve ice cream.

J bopped to the music and took in the scene as we drove around.  She pointed here and there in joy.  I couldn’t apprehend what she was seeing and she can’t tell me, but she was clearly happy.  We wandered around the music store and the dollar store.  She didn’t want anything — Alzheimer’s disease relieves material desires, yet she was having a good time.

I got her a cup of chocolate ice cream.  We sat outside and ate.  There was no need for conversation.

Next week, I’m taking her to Discount Shoe Warehouse.  I’m looking forward to a good time — for both of us.

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

Woman plans, G-d laughs

This is my first week back from vacation and I had planned a blog post about the wonderful people who visited J while I was gone.

Yesterday, our son and I had planned to take J to see Wonder Woman and to one of her favorite neighborhood restaurants.

Instead, we spent yesterday afternoon in the emergency room and I’m writing this.

It all started two afternoons ago when I got a call from J’s continuing care retirement community that she was leaning to her left side while walking.  They ruled out a stroke — always a good outcome — and had a call into her primary care doctor.  A nurse from the CCRC called me again at 7:30 pm that night.  He said they hadn’t heard from the doctor.  (Later, there was a lot of finger-pointing as to whether the doctor’s office or CCRC had dropped the ball.  I tend to believe the nurse at my doctor’s office, especially since the CCRC nurse admitted she didn’t even try to reach the doctor’s office until after noon yesterday.)  I suggested giving her Tylenol, which they did.

What I kept to myself was my anxiety not knowing whether J had a serious problem or not.  But there was nothing for me to do until morning.

I shuttled between calls with the CCRC and the doctor’s office the next morning.  By the time our son, T, and I were at the CCRC for our planned visit, everyone agreed J should go to the emergency room.  It is hard to interpret whether J was feeling pain or not, but when we saw her around 2 pm, she looked like the leaning Tower of Pisa when she tried to walk.

Several hours of waiting ensued at the ER before J was triaged, coaxed into giving a urine sample and x-rayed.  My main concern was whether she had suffered a fracture.

The x-ray was normal, but the urine sample revealed a urinary tract infection.  It doesn’t surprise me that UTIs are common in Alzheimer’s patients.  Hygiene can be an issue.  What did surprise me is that a UTI could affect her gait.  Who knew that poor motor skills, loss of coordination and falling could result from a UTI?

Six hours after arrival at the ER, we were back at J’s CCRC with antibiotics in hand; also a sandwich, since we didn’t want to subject J to dinner in a restaurant, given her restlessness after so long in the ER.  Plus, the kitchen at the CCRC was closed.

So much for our fun evening out.

When I spoke to J this morning, she sounded very cheery.  Surely she remembered nothing about our ER adventure.  That is one advantage of Alzheimer’s disease.

And to those who visited J while I was in Alaska, thank you.  You know who you are.

 

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. 

Sea Change

 

These past two weeks, the calls from staff members at J’s assisted living facility have hit like Pacific Ocean waves. Barely have I had the chance to absorb one before a bigger one clobbers me without warning.

First was the call about J taking the elevator to the fourth floor of her building where she entered the unlocked room of another resident, made the bed, and lay down. Next was the disturbing call about J throwing soiled Depends at one of the nursing aides when the aide tried to get her to take her medication. In another call, I learned about J’s refusal to shower. J lives in assisted living now, where she can turn down help and there is little the staff can do.

A different staff member called to tell me that J followed one of the other residents to the independent living building and stood outside her room, staring.  In yet another call, I learned that staff members had to cajole J to go to breakfast one morning. As she rode the elevator up to the dining room, she took a bite out of a cardboard box a delivery person was carrying.

A few days later I found that things were worse. J clearly had not showered since my last visit because she was wearing the same socks I had put on her on Wednesday evening. When I went to undress her, she had on two pairs of disposable underpants. The inner pair was soiled; the outer pair was swollen with urine. In talking with the staff, I learned that J was again refusing to shower or to accept help toileting.

A couple nights ago,  I got another call informing me that J not only wouldn’t shower, but she’d hit her favorite caregiver.  Before I got this call, I’d sent a lengthy email asking for a meeting with the director and staff to discuss J’s care plan.  I thought the problems were with the continuing care retirement community and its staff. Surely, these weren’t problems with J.

I wrote, “J cannot be the first resident with Alzheimer’s disease this facility has cared for who is functional enough to live in assisted living provided she gets appropriate assistance.  Based on what I’ve observed, I don’t think she’s getting the assistance with daily tasks of living she needs.  I am confident that if we put our heads together, we can create a plan that meets her needs.”

Now I think I was mistaken.  J’s primary care doctor called me this week and advised me that the staff at J’s facility is going to strongly suggest moving J to the Alzheimer’s wing.  Her behavior is such that they simply can’t manage her even at the higher level of assisted living care.

I knew J’s move to the dementia unit was not far off.  Facing this inevitability doesn’t make it any easier, however, especially as the visits by other family members and friends will continue to wane.  Those who do visit don’t understand, just as I only recently accepted, that J puts on a good show while we’re there.  It is hard to admit that she can be resistant and even aggressive when we’re gone.

When I first visited the Pacific Ocean and was toppled over and over by the waves, I learned that I could swim through them to limit some of the buffeting.  That’s also the only choice now.

 

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.”