A gift of apples

This is the first Rosh Hashanah where J has been living at a continuing care community because of her advancing Alzheimer’s disease. At her doctor’s recommendation, I did not bring her home for our usual holiday dinner. The dinner itself was joyous. Both our adult children were there as well as friends so close that they are family. We said the traditional prayers and discussed issues of the day. We laughed and ate and drank: gefilte fish, brisket, kugel, challah, apple cake. Washed down with wine. 

I missed J most in the kitchen. She was not there as I chopped the fish or kneaded the bread. Grating onions was not the only cause of my tears. 

I didn’t get the opportunity to visit J until last night. I brought her a bag of Granny Smith apples. She really lit up. “Oh!  These are my best,” she said. We washed an apple for her.  She bit in with a resounding crunch.  She giggled. Her eyes blazed. 

The metaphor of the High Holidays is that the Book of Life opens on Rosh Hashanah and remains open until the last moments of Yom Kippur. During the High Holidays, we repeatedly say a prayer called Unetanah Tokef.  It underscores that it will be written who will live and who will die in the coming year; who by fire and who by water; who by sword and who by beast; who by heart disease and who by Alzheimer’s disease. Only teshuvah (returning,) tefilah (prayer,) and tzedakah (righteous acts) averts this harsh decree. 

I still feel intermittent anger towards G-d. How could G-d take the vital, fiercely funny and intelligent J and turn her into someone who can only play dominoes with assistance?  

Jews also say a daily prayer, acknowledging that the soul we were given is pure, no matter what.  When I can practice teshuvah, the turning the tradition requires, I can see that J is returning to her pure essence. What a great deal we can learn from the way she eats an apple. There is unalloyed joy in the smell, crunch, juice, taste. Such laughter in her enjoyment. 

May all beings experience such joy in 5777. 

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.

Memories

I’m spending a week at the beach without J.  It’s the same beach where we have gone for the last 25 years or so. I was on automatic when I made the reservation back in January. It didn’t occur to me that it wouldn’t make sense to bring her, even though it was so difficult to have her here last year that I called a friend in tears and begged her to come down and help me. 

One of the rituals of being here has been to frequent a particular ice cream shop with the best frozen custard I have ever had. It is thick and rich and has none of the artificial flavor of most commercial custard.  Our kids grew up chatting with the proprietors, Tom and Joe. Last year, Tom wasn’t there and I inquired of Joe. Tom, who couldn’t have been older than his early 50s, had died of a massive heart attack. This year, Joe showed me his scar from heart surgery he had during the off season. “I shouldn’t be alive,” he said. 

This, combined with J’s inability to come to the beach this year because of the advancement of her Alzheimer’s disease, underscored for me how quickly life can change.  We can be so fragile and our futures can be shattered in a moment. 

We are in the Jewish month of Elul, when we take stock of our lives and prepare for the High Holidays. We ask ourselves questions about what serves us well and what we want to change. We have full faith that we can break old patterns.  We are reading the last book of the Torah, Deuteronomy, where Moses retells the story of the Exodus, and what is added is love.

 In this coming year, may I turn towards love, both the giving and the receipt. May I extravagantly let all the important people in my life know what they mean to me. As J’s mother always said, “Love people and tell them so.”

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?”

Dominoes


Figuring out how to cope with meals out has been a recurring theme in my relationship with J since she developed Alzheimer’s disease. We are in year seven since diagnosis and it has been a very long time since J has been able to hold her own in a conversation. It has been even longer since she expressed more than cursory interest in my thoughts or activities.  I don’t say this to engender pity. It’s a practical problem: how do I enjoy eating out when conversation is not an option?

Most important, J still likes going to restaurants, especially since the  food at her continuing care retirement community, while good, does not begin to cover the culinary universe we used to inhabit. There’s certainly no pizza or Chinese or haute cuisine. Nor is there wine, which is particularly galling to J. 

So we often go out to eat and I am left with how to cope with the cavernous time between ordering and the arrival of the food. Hence, dominoes. Dominoes is a simple game where the player only need recognize and match the number of dots on the end tiles. 

At a diner breakfast last week, I pulled out the lovely pink plastic dominoes that were a recent gift. The game occupied us both. Before we knew it, eggs and toast and home fries had appeared. J even won the game and was delighted.  I also was spared the uneasiness of sitting in a restaurant without conversation and waiting what usually feels like hours before the food comes. 

I have learned a couple of other techniques to cope with meals out together. I often select a casual restaurant or bar that broadcasts sports. I’m a huge baseball fan, and a game can distract me and provide us with conversation fodder. J has never been the fan I am, but she doesn’t mind. 

We also recently had a great experience sitting at an oyster bar. I was initially concerned that it would be too loud and busy for J. It turned out that she loved watching the shuckers. All the activity kept me engaged as well. Not to mention buck-a-shuck oysters and clams and $3 drafts. It was a revelation that while a big, noisy family dinners make J feel excluded, a happy, bustling bar makes her feel part of it all. 

Finally, a number of friends have suggested that picnicking on the porch of the CCRC is another option.  

So all it takes is a little creativity to turn discomfort into joy. Now if I can only remember that when the next challenge presents itself. 

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.

Ambiguous loss


“There is no such thing as closure. We have to live with loss – clear or ambiguous. And it’s okay … it’s okay to see people who are hurting and just to say something simple: ‘I’m so sorry.’ You really don’t have to say more than that.”

So said Pauline Boss, a psychologist who recently appeared on On Being, a radio interview show hosted by Krista Tippett. (https://itunes.apple.com/us/podcast/on-being-with-krista-tippett/id150892556?mt=2&i=371269643)

The phrase Boss coined, and the field of study she started, “ambiguous loss,” is particularly apt for people with Alzheimer’s disease and those of us who love them and care for them. A person with Alzheimer’s disease loses part of herself on a regular basis. Her family members lose the person she was, become accustomed to the new person, and then lose her, too.  There is no closure. 

And as someone who lost her parents 10 and 11 years ago, I appreciate Boss’s point that closure is a myth. There is not a day when I don’t think of my parents. American culture pushes us to get over our losses – to move on. But my continuing dialog with my parents doesn’t seem unhealthy to me. 

Interestingly, I don’t that often think of the old J, my wife, before we figured out she had Alzheimer’s disease. Maybe that’s because we are so still in the midst of it. She recently moved to a continuing care retirement community – almost seven years after diagnosis. Or maybe it’s because it’s too painful to focus on the bitingly funny and fiercely intelligent woman she used to be.

Everything, of course, changes. There is great wisdom in not seeking to arrest anything or anyone in motion. Perhaps that is the overwhelming lesson of Alzheimer’s disease. 

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.

Home Sweet Care Community

 

stapeley

We are four weeks into J’s stay in the personal care part of a continuing care community.  She has adjusted remarkably well.  In fact, when I accompanied her into the main building after going out for dinner on Wednesday night, she didn’t want me to take her back to her room because she wanted to go into the first-floor parlor and watch a movie with her new friends.

Still, she has said more than once that she wants to go home, or that she wants to go back to her street.  What does that mean?

In all the reading I’ve done, and in talking with her Alzheimer’s doctor, the social worker in my lawyer’s office, the staff people at the CCC and others who have placed their loved ones at a continuing care community, people with Alzheimer’s who move to CCCs often ask to go home. That doesn’t literally mean that they want to go to a specific place. It generally means they want reassurance. Below is a sampling of articles about the request to go home and suggested responses.

3 Ways to Respond When Someone with Alzheimer’s Says I Want to Go Home

http://www.alzheimersreadingroom.com/2016/02/alzheimers-dementia-education-asking-to-go-home.html

http://www.alzheimersreadingroom.com/2015/10/alzheimers-dementia-fragile-mom-living-with-dementia-wants-to-go-home.html

http://www.alzheimersreadingroom.com/2010/09/alzheimers-disease-i-want-to-go-home.html

http://newoldage.blogs.nytimes.com/2008/12/04/talking-alzheimers/?_r=0

So how have I responded to J when she asks about home?  I kick the can down the road. I change the subject. Or I say something vague about not going there now.

I remember that J’s brain doesn’t function like ours and that logic doesn’t work. Most of all, I know that if I told her that the CCC is her home or that she is not going back to our house, it would cause pain. She would forget and it would cause pain again the next time I told her.  And again. And again.

Our daughter, L,  and I visited this afternoon. At 4 pm, there was a musical performance. Once again, J left us without looking back. Earlier on the phone with her brother, J said, “I love you.” She then gestured broadly towards me and L and said, “And these two, too.  Because they are here.”

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.