False alarm – sort of

646020132_77e1628842_z

(Creative Commons Oldish Fire Alarm by bmb is licensed under CC BY-SA 2.0)

Yesterday I got a call from the memory unit where J lives that her blood pressure was dangerously low. I got her doctor on the phone, who gave me the impression that the end could be very near.

So I called our adult children, who live within five miles of me. We all prepared ourselves for the worse as our son, his girlfriend and our daughter piled into the car, heading to J’s facility.

When we got there, the aide had given J a tranquilizer and she was sound asleep. Her breathing was easy and she didn’t seem in any pain. Her doctor, who had not seen J in person before asking the aide to call and alarm us, changed her level of care from palliative to hospice. This was good because it meant a registered nurse was immediately dispatched to evaluate her.

A full evaluation was impossible because of the tranquilizer, but at least the nurse could assure us that J wasn’t dying last night and she sent us back to our respective homes.

Who knows what comes next, but thanks to hospice, we will have more than the word of an aide with little to no medical training and an on-call doctor who hasn’t actually seen the patient. If I sound angry, it’s because I am. What a system!

I also recognize that I’m angry because we are going to lose our sweet J sooner than I thought. So hug your loved ones for us and wish J an easy passage when it comes.

UPDATE:  J’s blood pressure returned to normal today.  Quite the emotional roller coaster.

 

The Beginning of the Beginning of the End

After a meeting with her doctor and the staff at her continuing care retirement community, we have decided to put J on palliative care. That means the doctor will withdraw all medications to manage any medical conditions (high blood pressure, high cholesterol, etc.), and the goal of her care will be to give her comfort.

Our children, J’s brother and I initially saw this as a death sentence and we have been grieving. After visiting J today, though, I’m not so sure. Of course I know that Alzheimer’s disease is a one-way ticket and J’s recent changes are precipitous.

Alzheimer’s disease is generally regarded as having seven stages. Examine a list of the conditions of Stage 7 and we’re there. Requires assistance with daily activities and personal care. Check. Unaware of recent experiences and her surroundings. Check. Lost the ability to walk, has increasing difficulty communicating, and is vulnerable to infections. Check, check, check. At this point, J sleeps much of the time and is uninterested in most food.

But when our daughter, L, and I visited today, J was much more engaged than she has been in weeks. L got J to eat one and a half cups of chocolate pudding — a huge accomplishment. J smiled. Repeatedly. We hadn’t seen that for a while. J swayed to Aretha and was entranced by our reading aloud from the first Harry Potter book.

Activating palliative care means that J gets additional services: a registered nurse will visit her 2-3 times a week, and a speech therapist will evaluate her ability to swallow. (Difficulty swallowing is a symptom of the end stages of Alzheimer’s.)

The cynic in me wonders whether the move to palliative care is all about insurance. Since the doctor ordered this level of care, there is no charge for the added services, for which I’m grateful.

J’s rally and the increased resources have not kept my heart from breaking at the realization that, while the end isn’t tomorrow, or next week, it is closer than ever.

Rabbi Simon Jacobson teaches that “there is nothing as complete as a broken heart.” As he has written, “[P]aradoxically, the more broken you are now the more whole you have the chance to become.” @meaningfullife

If that is so, the kids, J’s brother and I have an enormous chance to become whole.

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.”

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. 

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.

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?”