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?

Making a Big Difference in a Small Way

I know I’m a broken record, encouraging family and friends to visit their loved ones with Alzheimer’s disease. So on this day when so many spend time together, let me quote someone else who makes the same point.

Gary Chapman, the pastor who wrote The Five Love Languages, has turned his attention to Alzheimer’s disease. In a recent article in Time magazine (http://time.com/5054768/alzheimers-dementia-spouse-love-languages), he explains that visiting someone with Alzheimer’s disease is good for them and good for you.

“Many times, especially after they put them in facility, people will say, Why should I go visit? They don’t even know who I am. But there are two reasons: First, they still have the ability to feel love emotionally … And they need love, it’s the deepest emotional need humans have: to feel loved. So you are doing them a great service when you spend time with them and seek to communicate to them and try to touch them in an emotional way. But it’s good for you too, because you know you are doing the right thing. And so at the end of all of it, you’re going to feel you did everything you could do. There’s something about that that gives you a deep sense of satisfaction I think.”

Visiting someone with advanced Alzheimer’s is hard. There is no way around that. I try to focus on the satisfaction it provides, especially when J’s face lights up because I’m there. When you visit someone with Alzheimer’s disease, you have changed her world for the better for those moments. In a powerless situation, you have done everything you can do.

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

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?”

Hanging on the Porch


I get that it is hard for many people to visit J now that she has Alzheimer’s disease and is at a residential facility.  She is not who you remember her as. But the essential J is still there, and it important for her to have regular visitors, whether she recognizes you or not.

Our friend, D, left the scene for a while. Even though we have been friends for 30 years, it was difficult for her, especially since she had lived through her own parents’ dementia.  She recently returned to us, and we couldn’t be more thrilled and grateful. Here is a guest blog from D about her first visit with J at her CCRC:

So, I had a wonderful visit with J.  I’d pulled into the driveway of the place, to see if there was parking…none was to be had…but I drove past the porch and immediately recognized her as she was sitting there reading. I thought she saw me wave as I went by, and worried when there was no recognition on her face. But when I walked up, her whole face lit up. It was lovely to see her. She showed me around the place, took me to her room, and we we sat in various places to talk as she showed me around. I wanted to go out on the patio next to her room, but she pointed at the sign above the door that said ‘THIS IS NOT AN EXIT’ and indicated that she shouldn’t go out there. So maybe you can convince her that she can use it, as it looks inviting. She expressed that she likes it there, said the food is good, the library is large, said she’s made friends with some people, and she loves the patios. She said that in the afternoon, she mainly reads and ‘walks’. When I left, she immediately ducked into the music room to listen to someone playing classical piano.

You did a great job, A. She’s well and has a good life there. She stopped to greet someone in a wheelchair, introduced me, and spoke enthusiastically about her new home.

I’m so glad I visited and look forward to seeing her again soon.

xoxo

Xoxo right back at you, D.  Thanks for being a brave and loyal friend.

Does Size Matter?

assisted-living-floor-plan-one-bedroom-weymouth

I’m working on reaching agreement on a contract with the continuing care retirement community where J is now living to allow her to stay there until the end of her life while not impoverishing me.  Giving the CCRC where she lives the benefit of the doubt, I am still in an unfortunate position because they placed her in the largest, most expensive room for her initial respite stay.  I now must decide whether to move her from her current spacious digs to a smaller room.  Not only will the smaller room be less comfortable since she has become accustomed to the bigger space, but she has Alzheimer’s disease and any change is hard.  Had the CCRC administrator clearly explained the price differential, I would have had her move into a smaller room initially.  And yet, I don’t believe the administrator intentionally put me in this bind.

I sat down with a calculator today and the difference is substantial.  If she stays in her current room, I have enough money for 25 months without dipping into my own retirement savings.  If I move her, I have enough money for 45 months.  Looking at the cold, hard numbers, it seems like a no-brainer.

The smaller room also has two windows instead of one, and it is around the corner from a small porch, which would almost be her private space because no one else seems to use it.  The smaller room is across the hall from her current room, so it’s not like she would have to get used to another floor.

I’m going to get the tape measure out on my next visit on Tuesday and see if I can fit a bed, dresser, TV and a small table with chairs into the smaller room.  If yes, it’s a go.

I look forward to having this upheaval behind us.  On a more positive note, J is still happy and says she is making good friends.  Let’s hope I look back on the room switch as a small hiccup.

Letting go


I’m on a Jewish mindfulness retreat in New Mexico where I’m not supposed to be in contact with the outside world.  It’s Shabbat, a day when we particularly are encouraged not to look at electronic devices.  It’s early evening.  I glance at my phone.  I have six messages from my wife, J, who has Alzheimer’s disease and who recently moved to a continuing care community.  I can’t help myself.  I listen.

1:18:33 PM:  “I need help.”

1:20:04 PM:  “One.  One.  Yes.”

1:23:31 PM:  “I … hemm…uh…it’s…uhhhh….”

1:31:16 PM:  [No sound.]

1:56:11 PM:  [Unintelligible background noise.]

5:50 PM:  “Oh, fuck.”  [Unintelligible.]

It is two hours earlier for me than in the East, where J and I live.  The latest message is two hours stale; the earlier messages are almost seven hours old.  I launch into action anyway.  I call the nurse’s station.  The certified nursing assistant on J’s floor doesn’t pick up.  I call the main desk.  The security guard promises to get the CNA to answer.  I call again in five minutes.  The CNA lifts the phone and immediately puts me on hold.  She eventually comes back and I explain the messages from J.  She says she has already gotten her ready for bed and everything was fine.

I nonetheless call J.  She miraculously picks up.  (She often doesn’t.)  She is clearly frustrated about something.  She says it’s in her hand. “Is it the remote?” I ask.  “No.”  “Is there a problem with the radio?” “No.  It’s in my hand.  I only have three.”

I have no idea what she is talking about, and I am getting upset.  I’m 2,000 miles away and I feel powerless.  One of the caregivers who took J on outings when she lived at home is getting together with J the next day.  I text E and explain that J needs something, but I don’t know what.  I ask her to investigate.

E texts the next day and says J greeted her with, “I have a problem.”  J showed E her dresser drawer and that she only had three Depends (even though I left her with a large supply.)  J said to E, “A lot more!”  So E made a CVS stop and all was well — except that I had spent an agitated evening because I thought I needed to swoop in and save the day.

So what is the lesson from this scenario?  I have to accept that I am not J’s full-time caretaker anymore.  I have entrusted her to a community I fully vetted, and I can’t fix everything.  One of the joys of living at the CCR for J is that she has greater control than she did at home.  I have to let her learn to solve her problems, which she obviously would have done without me if I had been able to trust her.  It’s a lot like having children and letting them go.

Many of my friends and family said the transition from home to continuing care would be harder for me than for J.  They are right.  Like so much in life, it is a process.