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. 

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

one-night-emergency-room-merl

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.

Leaning-Tower-Pisa-Italy-Photos-Pictures-27694

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.

 

Lucky break

The reminder came up on my calendar: “Call about prescriptions.”  I saw it. I thought about it. I didn’t pick up the phone. 

Yes, it was busy at work. Yes, my house is in chaos as I try to get it ready to put on the market. 

Not much of an excuse when your wife has Alzheimer’s disease and you have witnessed the havoc it wreaks when there is any medication lapse.  Plus, I very much think of myself as a responsible person. That’s an integral part of my self image.  So how could I let a medication reminder go?

The next call was from J’s continuing care community. “J’s medications are running out.”  Of course, the call came late on a Friday afternoon and I didn’t listen to the message until after 5 pm. I couldn’t bring myself to call the CCRC back. The message was vague, and information hound that I am, I didn’t want to know if J actually had run out of any particular medication. After all, there wasn’t anything I could do about it until Monday.

I get J’s medications through an online pharmacy. It’s the lowest cost option on my health insurance plan. For some reason I can’t fathom, the pharmacy will not automatically mail refill prescriptions. Even though the doctor has authorized them, this pharmacy requires that I call and request shipment. I can’t call too early, though, or the pharmacy won’t fill the order. Hence, the calendar reminder. 

I called the pharmacy as soon as I could on Monday morning. The woman I spoke to was polite and assured me the meds would be mailed as soon as possible. She reassured me that the pharmacy is in the same state where I live, so they could come a lot faster than a week. 

They arrived on Thursday and I took them right over to J’s CCRC after work. It turns out I got them there in time. No lapse. Hallelujah!

Lessons learned?  Never ignore calendar reminders. More importantly, forgive yourself. It disappoints me that I didn’t take a simple action that would have assured J’s well being and my own mental health. At the same time, I recognize I’m an imperfect human being who sometimes misses even the easy things. The trick is to accept my imperfections and move forward — until the next time I ignore a calendar reminder. 

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.

 

You Can’t Go Home Again

J has been living in a continuing care community for three months now and has not been back to the family home where we lived together for 16 years.  We had our regular visit with her Alzheimer’s doctor last week.  I always meet with him separately and inquired when I might bring J back to the house for a visit.  His advice surprised me.

We have been seeing Dr. R for a number of years, and I have grown to trust him despite a certain formality.  I often describe his looks as a cross between Rod Serling and Mr. Rogers.  Maybe it’s his very thin ties and drab cardigans.  He has a soothing voice but can come off as aloof.  Notwithstanding this affect, I am certain of his experience and caring.

When I asked about bringing J home, he responded with a question.  Not surprising. He is a board-certified psychiatrist after all.  “Has she been asking about home?”  “No,” I responded.  “Then I wouldn’t bring there there.”  “What about the High Holidays and Thanksgiving?” I asked.

Then he asked the questions that put everything in focus: “Why would you bring her home?  Who would that be for?”

“But what about Thanksgiving?” I persisted.  “She doesn’t know it’s Thanksgiving,” he replied.  Then after emphasizing that there is no right or wrong answer (again, he is a psychiatrist), he further explained that J is secure and content at the CCRC and likely would be confused and possibly upset if she were brought back to the house and then returned to the CCRC.  Stability, security and predictability are crucially important to her now.

With that interchange, I had to confront that the desire to have J home for dinners and the holidays serves my convenience, my fantasies of family togetherness and my perceptions of the needs of other family members more than it serves her needs as this point.  And there is the overlay that I plan to put the house on the market next spring, so I have visions of the last this and the last that at this address.  It is hard to accept that J already has spent her last hours here.

More loss.  More loss.

Two of my sisters will be traveling long distances to be with us for Thanksgiving.  We haven’t seen one of them for two years.  She will be bringing her new husband, who none of us has met.  We will have to find a new tradition that incorporates J where she can meet us – in the community where she is comfortable.  Sometimes it is hard to remember that it is about her, not me or us.  So I commit to keeping Dr. R’s question close to mind: “Who would that be for?”