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.

Ch-ch-ch-changes

  
The dog left on Saturday. J simply couldn’t care for him any longer and I couldn’t take him on permanently given the progression of J’s Alzheimer’s disease, my full time job and trying to preserve  some balance in my life. 

I was very concerned that the loss of the dog would precipitate a meltdown. Not at all. A friend took J out to lunch on Saturday while another friend and I gathered all of the dog’s things. Our son’s girlfriend, A (another of our angels), agreed to take the dog, and so she came over to ride in the car while we transported him from our house to hers. 

I cried when we left him. It was not for him, who will have a much better deal living with A, who has time and energy to feed and walk and play with him. It was not for me, who feels relief at being responsible for one fewer being.  It was for J, who has lost her job, the ability to drive, financial independence and now her beloved dog. 

After the dog left, J and I spent a quiet Saturday night catching up on House of Cards. When I came out of the bathroom, she was on the steps looking into the foyer, where the dog’s crate used to be. “Crate?” she said. I said, “The dog is with A.”  J’s face transformed from anxious to calm. I have gotten no further questions. I have not mentioned the dog and neither has she. Even though I know the disease relentlessly progresses and her decline has been accelerating, I am stunned. 

The student who had been living with us for several years also moved out this weekend. I need his bedroom to house caregivers during my upcoming trip. Fortunately, I was able to find him a spot just a block from us. (Another angel – in the form of a neighbor.) 

The house seems very quiet. I’m sure I will adjust as I have to so much else. 

Channeling My Inner Hoover

I have always admired Herbert Hoover. Bad president, good man (a little like Jimmy Carter, but I digress.) Hoover was a genius at logistics. In charge of relief during World War I, he fed an estimated 11 million children between 1914-18. He repeated his efforts during World War II.  He was called to my mind last week as I tried to put the pieces in place to spend the weekend in New York while J stayed at home.

We do not have full-time help at home but rather a patchwork of friends, family, paid companions and S, a 20-something refuge from Africa who has lived with us for three years while he finished college.  So what was involved in me getting away for the weekend?  Friends took J out on Thursday night so I could pack.  (Bless you, T and B.)  I also had to text S to make sure he would give J her pills while I was gone, do a load of laundry, text with the freelance writer she meets with on Fridays, email with the friend who was taking her out on Friday night, communicate with the caregiver lined up for Saturday, and reach out to a number of folks to find coverage for Saturday night.  Then I had to organize J’s pills and leave her a series of Post-its to advise her who was coming when.  Then I put the same information on the calendar in the kitchen in case she ignored the Post-its.  That, of course, was in addition to my packing.

I admit that my toils are not on par with organizing the delivery of tons of food to millions of starving children, but it can feel overwhelming at times.

And it was well worth it.  I had a weekend of shows and museums, a run in Central Park (in shorts and a t-shirt!), and reveled in the unseasonably warm weather while strolling Fifth Avenue and gawking at the window displays and the Rockefeller Center tree.

We caregivers need these respites so we can be our patient bests upon our return.  I am grateful for all the help that enabled me to enjoy my time away.

 

G-d Bless the Helpers, Every One

Two experiences in the last couple of weeks have underscored the importance of the people who care for the caregivers.

I already wrote about my sister visiting and offering me a night out. That was amazingly thoughtful. What made an even bigger difference was that she spent significant time with J and got to see where she really is and how difficult it can be. Having my sister say, “It must be so frustrating” and “I don’t know how you do it” was a great tonic.

We also were fortunate to have a dear, old friend reenter the picture. I’m not sure why had drifted apart, but she recently contacted us and offered to bring lunch and spend the afternoon with J. The three of us had a lovely meal and then our friend hung out with J.  She brought some adult coloring books and a large set of colored gel pens.  J is not one for arts or crafts, and she was resistant at first.  When I checked in on them later, they were chatting and J was happily coloring away.

Again, what made the difference is that a relative or friend had taken the initiative to spend time with J – not just to ask me how things are going.

So if you know someone with Alzheimer’s disease, give them the great gift of your presence.  That also is a huge gift to his or her caregiver.

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.

I’m No Angel

This past weekend, when we were visiting friends at the beach, J lost her iPad. I commented on it not being the best choice for J to bring her iPad to the beach.

The next day, we were packing up to leave and the iPad was nowhere to be found. We unpacked everything in J’s bag. No iPad. We searched the entire bedroom, the drawers, the closet, under the bed. No iPad. We looked under cushions in the living room. In our beach bag. In our friend’s beach bag. In the pockets of the beach chairs and the cart our friends take to the beach. I even checked the refrigerator. It wasn’t anywhere.

I resisted the urge to ask J where she had been when she last had the iPad or to try to retrace her steps. Asking such questions to someone with Alzheimer’s disease only frustrate the questioner and border on cruelty to the person being asked.

I have to admit that I did not take this particular setback with grace. We were expected at a party in the afternoon, and I had anticipated an hour or so to relax and read the Sunday paper before we had to leave. I had a hard time letting go of that fantasy.

We ultimately found the iPad in an extra bedroom near our room. J had plugged it in to charge.

I recognize this isn’t a particularly amusing or possibly even interesting post. But this is what living with a person with Alzheimer’s disease is like on a daily basis. Things disappear. Time I thought I would have vanishes. I am not as patient or understanding as I would wish to be.

The only thing I can do is move forward and forgive myself. Fortunately, J won’t remember my impatience and, for both of us, tomorrow is a new day.