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.

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.”

Softening the heart


Jews everywhere have just finished celebrating Passover, when we remember our redemption from slavery in Egypt. The villain of the Passover story is Pharoah. Given multiple opportunities to let the Jews leave, he instead hardens his heart, eventually with G-d’s help, leading to calamity for his people. 

As an antidote, one of my rabbis provided us with an exercise to soften the heart. It consists simply of naming things. So, for example, on a walk, you might say to yourself, “Rock.” “Tree.” “Bird.” “Stream.”  The point is to quiet the mind and notice the beauty around us. The rabbi says this softens our heart for love. 

What struck me about this exercise is that it’s what J now does naturally, since she developed Alzheimer’s disease. We have taken a number of walks recently.  Despite her limited ability to sustain speech, she notices, points and says, “See, flower.” “Puppies.” “Little boy.”

Perhaps I am rationalizing, and I certainly don’t want to minimize the scourge of Alzheimer’s disease, but I do think — and hope — that these simple declarations reflect that her mind is now quiet, and the cares and anxieties we experience have dissipated. As a result, her heart has softened and she can express the love she has always felt. 

Precious moments

Downsizing from 3400 to 1000 square feet takes time. As a result, I haven’t been as available to J as in the past. This has made me feel guilty at times, but a visit last week clarified where we are in our Alzheimer’s journey and what really matters. 

I left work early and took J for a walk. It was a gorgeous spring day. While her verbal skills are minimal at this stage, she was able to point to flowers and children and dogs, registering joy in her perceptions. 

I asked her if she ever gets lonely. She gave me an inscrutable look — the type of look I recognized from the old J. “No,” she said, “I never do.”

What family, friends and visitors need to know is that there is only now for her now. And even though she is not pining away, a very short visit for a walk or cup of coffee makes her light shine. 

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. 

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.

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. 

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. 

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.