Birthday Blues II

Thursday is J’s 67th birthday and we had a family party on Sunday.  We did it up right.  Bagels, lox, birthday cake, decorations and presents.

J seemed happy to be with all of us.  She laughed a lot.

birthday cake

But I’m not at all sure she knew it was her birthday.  At this point, she misses a lot of the cues.

We lit a candle for each decade.  J licked her index finger as if she was going to snuff them out.  But we adjust.  We all blew the candles out with her.

Her presents were a pair of Skechers and some taffy.  She wouldn’t try on the new shoes, even with cajoling.  She downright rejected the taffy, perhaps with some knowledge that it isn’t good for her teeth.  Her brother, W, was trying to evoke their childhood taffy pulls.  That memory seems gone, although she was able to call W by name.

She didn’t eat much, but she had a stomach flu earlier in the week, and another urinary tract infection.  It may take a few more days for her to get her appetite back.  At times, she had a blank look on her face.

The party was hard on all of us except J.  She is slipping away from us.

I recently listened to a podcast with Atul Gawande, a doctor and elegant writer whose new book is called, “Being Mortal.”  (See https://onbeing.org/programs/atul-gawande-what-matters-in-the-end-oct2017/) He talked about infusing meaning into the lives of his terminally ill patients by asking them, “What does a good day look like?”

What does a good day look like for J?  Feeling the sun on her skin.  Seeing trees and sky.  Being with familiar people who are upbeat.  Feeling safe.

What does a good day look like to me?  On Sunday, giving J a good day was enough.

 

Errand Girls

 

As regular readers of this blog know, I have struggled with how to make visits with J fun for both of us as her Alzheimer’s diseases has progressed.  Visiting alone can be tough, especially since J’s verbal abilities have diminished.  Going out to eat is losing its charm as there are only so many games of dominoes we can play, or cute animal videos we can watch.

I have found a new go-to activity: running errands.  Last week, in desperation to get some things done, I took J with me on my appointed rounds.  I put swing music on the radio.  And off we went: to take CDs to the music store to sell; to Goodwill; to the dollar store; and finally for soft-serve ice cream.

J bopped to the music and took in the scene as we drove around.  She pointed here and there in joy.  I couldn’t apprehend what she was seeing and she can’t tell me, but she was clearly happy.  We wandered around the music store and the dollar store.  She didn’t want anything — Alzheimer’s disease relieves material desires, yet she was having a good time.

I got her a cup of chocolate ice cream.  We sat outside and ate.  There was no need for conversation.

soft-serve

Next week, I’m taking her to Discount Shoe Warehouse.  I’m looking forward to a good time — for both of us.

So many reasons to give thanks


I was working late at a new job in the early 90s on a project that had to be done by morning. By 9 pm I thought I was alone when a co-worker I barely knew bounded into the library. “Do you need any help?”  She stayed with me through the wee hours of the morning until we got the job done. It was the beginning of a beautiful friendship. 

We both left that firm and, over the next 25-plus years, we stayed in touch, sometimes seeing each other more and sometimes less. I knew that M was battling cancer and visited her in the hospital. I knew she was in remission and we got together. 

We were supposed to see each other on October 28 and I got a text from M saying she had gotten some bad news news from her doctor and had to take a raincheck. I called and we spoke for a few minutes. I told her I would call again soon. I didn’t and she passed away on November 14 at the age of 49. 

I have no great excuse why I didn’t call again. Work was busy. Life was busy.  

I have beaten myself up sufficiently. And I am determined to learn from this experience. The day after the funeral, I reached out to a childhood friend whose birthday I had missed. 

With M, I was jolted with sudden death. We think we have so much time. The truth is, we don’t. 

With J, who has Alzheimer’s disease, the loss is piece by piece. Fortunately, I think she is beyond perceiving what the disease already has robbed her of and what is to come. That’s not true for me and our children, who have to cope with J not coming home for Thanksgiving for the first time. She moved to a continuing care retirement community in May, and her doctor thinks it could confuse and upset her if we brought her home for the holiday. Instead, we are going to bring dessert to her and will see how that goes. 

All of this is to say that life is short and we don’t know what’s around the bend. So gather your loved ones around you tomorrow, and give thanks.  Send messages of love to those who aren’t at the table, whether prevented by death or disease or distance. 

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. 

Free pizza!

  
Living with a spouse in the middle stages of Alzheimer’s disease isn’t all bad. 

Someone rang the front door while I was getting changed after work on Thursday. I know I should have come down, but I didn’t. I heard J open the door. 

I had stopped to see our daughter on my way home from work and had no dinner plan. 

When I got downstairs, we had a cheese pizza and some rolls with marinara sauce. We had not ordered them. The boxes had no contact information for the pizzeria. I could not get out of J whether she had paid for them or not. I put a message on the neighborhood listserve  to see if anyone had ordered food that hadn’t been delivered. No one claimed them.

 So we ate the pizza. Problem solved. 

The Miracle of the Thanksgiving Rolls

  

It is not Thanksgiving without  Granny’s rolls. They come from a yeast recipe that has been passed down at least three generations. One of our traditions has been for J to make the rolls on Thanksgiving day. For many years, she has done so with our son, T. 

This activity takes place after the turkey is in the oven; the stuffing and cranberry sauce are ready; the table is set. I usually have retreated to the bedroom to nap before guests arrive. 

This year, however, our son was working in Europe over Thanksgiving. There is simply no way J, who has Alzheimer’s disease, could make the rolls by herself. What to do? 

I made the dough on Wednesday night, when I also make the cornbread for stuffing and the cranberry sauce. Into the refrigerator it went, with hope that an overnight chilling would not affect the texture or taste. 

On Thursday afternoon, I absented myself from the kitchen while J dove into the dough. She may not be able to cook generally, or to remember to brush her hair, or to feed the dog, but with a little help from a friend, the rolls came out as good as ever. More important, for at least a brief time, J felt smart and confident. A miracle indeed. 

Fried or Grilled?

 

J and I are visiting her brother and sister-in-law for a couple of days. On Thursday night, we had dinner with our sister-in-law and her mother, E.  It was somewhat painful. E is 89 years old and suffers from dementia.  She is farther along than my 64-year-old wife, J, who has early onset Alzheimer’s disease.

E was not sure she had ever met us, although she certainly has several times in the 30-plus years her daughter and I have been part of J’s family. E asked repeatedly where we were from. We patiently answered every time. 

E also asked many times if J and I are sisters. J and I have been partners for 30 years and have been legally married for two. I saw no reason to try and explain that to E.  I’m sure it would have been confusing for her. 

I didn’t take any of this personally. I understand that E sometimes asks her daughter, K, if she is married. K and J’s brother married 30 years ago. 

My first reaction to this visit with E was it brought back the pain and hilarity of my father’s dementia. He had emergency heart surgery in 1999 and was cognitively impaired for the rest of his life. At one group restaurant meal, which is now part of family lore, he repeatedly asked, “Fried or grilled?” in reference to a calamari order.  “Fried, Dad.”  “Fried or grilled?”  “Fried, Dad.”  You get the idea.  For years after, the refrain, “Fried or grilled?” would cause me and my sisters to double over in laughter. Not in a mean way. Just sometimes we need to see the absurdity of a situation and laugh about it. 

My second reaction was to question if J will soon have the same diffculties as E remembering people and following conversations. J already doesn’t recall people she doesn’t see often. And she is often very quiet in group settings because she can’t keep up with fast-paced talk. I tell myself that the course of Alzheimer’s disease is highly individual, that none of us knows what tomorrow will bring, and that all I can do is my best to meet well whatever unfolds.

My final reaction is enormous love and respect for K. She is there for her mother, E, every step of the way. I have never heard her complain or express fatigue. She seems to have limitless stores of patience and love. I am lucky to have her as part of my family and support, and as an example to emulate. 

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.