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.

Waiting and Connecting

Last weekend had its ups and downs. We returned from our beach vacation and I attacked the normal reentry chores of unpacking, cleaning the car and doing laundry. J followed me from room to room, seeming at times to be at loose ends. At one point, she was simply standing in the middle of the kitchen, looking expectant. I asked her, gently, “What are you doing?”  She said, “I’m waiting.”  I could not discern what she was waiting for.

Then, on Sunday, we met up with one of J’s former teaching colleagues, who had moved far away and was visiting with her new beau.  The evening was smashing. J recognized her friend A and greeted her warmly.  It turns out that A’s gentleman friend’s wife has Alzheimer’s disease and lives in the memory center of the continuing care community where A and the new friend reside. They are both devoted to her. It is not a conventional relationship by any means and yet it is clearly a relationship borne of love. And if love can be found and expressed in this world, I’m all for it.

A asked J to sit next to her at dinner and helped her order. The conversation was lively and J was able to participate, which she doesn’t often do anymore. An evening filled with love and warmth and good food. As the poet Ira Gershwin wrote, “Who could ask for anything more?”

The Thursday Night Supper Club

For the past two years or so, a group of angels has signed up to have dinner with J on Thursday nights. This predictably gives me a night off to go out alone with friends, and it gives J a social outlet apart from me.

So imagine my anxiety when two of the Thursday night stalwarts, T and B, asked to meet with me to discuss their experience with J.  They assured me it wasn’t an emergency and that I shouldn’t worry, but I did. It took a couple of weeks to schedule and so my distress meter rose a notch or two. Had J or I done something to offend them?  Was J exhibiting strange behavior of which I otherwise was unaware?  We met over a glass of wine and it was sweet (the meeting, not the wine). T and B just wanted tips on how to better communicate with J.

As time has gone on, J has become more difficult to engage in conversation.  J also has no problem expressing when she feels bombarded by questions.  B was quite forthright that when they started going out together, she had a tendency to ask a lot of questions, and J did not respond well.

It has taken practice for me to learn to share a meal in silence together.  It is quite different from early in our relationship, when dinner conversation was lively and covered everything from what was happening at work to other news of the day, including politics local and national.  When we had two children at home, attendance at family dinner was required, at least until high school sports interfered, and talk was free-wheeling.  These days, J and I often listen to Fresh Air on National Public Radio while we eat.  It gives us entertainment and occasionally, J will have something to say about the interview we are listening to.  When we go out, at least during baseball season, it’s often to sports bars.  That way, I can watch the game and not feel pressure to keep up conversation.  If we go to a nicer restaurant, I have us seated outside during warm weather so we can watch and comment on the parade of people going by.  I otherwise focus on what we can see and hear as topics of conversation.

B and T now take J to a local Italian restaurant with an open kitchen, a chatty server and a dog.  Again, there is much to see and hear and smell.

The Thursday Night Supper Club is a hodgepodge of people who go in and out of service as they are able.  Among them are a friend from elementary school, more than 40 years ago; a friend from professional school, more than 25 years ago; and many friends and acquaintances from synagogue.  They have such an incredible impact on the quality of our lives.  They are truly angels.  I hope they all know that.