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. 

Boxes, boxes everywhere

I’m preparing to put the house where J and I spent 16 years together on the market. This has necessitated cleaning out mountains of stuff.  It was bad enough to finally have to deal with the boxes from my parents’ house.   Figuring out what to do with the many boxes from J’s parents’ house also presented a challenge. 

I put aside a box of J’s photos and memorabilia for our 20-somethings. I asked J’s brother, W, if he wanted the rest. He lives a couple of hours away and visits J every month or so. We decided I would put the boxes in J’s closet in the room in the continuing care retirement community where she lives and he would pick them up on his next visit. 

There was only one problem. J, who has Alzheimer’s disease, had other ideas. She already had started moving her clothes out of her dresser and into a box in her closet. Now she had six more boxes to work with. The next time I visited, her belongings were interspersed among the photos of her extended family.  She also had moved one of the boxes to the nurses’ station. 

So the kids and I moved the memorabilia boxes to an office in the CCRC. That only helped to a point. The next time I visited, J had put many of her things in another box she took to the nurses’ station, and had jumbled a mass of stuff in another box in her closet. She also had filled her laundry basket with trash and her cell phone had gone missing, never to be found again. 

The message was clear: J needs more help. I emailed and spoke to the head of her facility, and she is now getting assistance to dress and manage her laundry. I haven’t been over yet this weekend, but I am hoping her clothes are in her dresser and closet, as they should be. 

It can be hard to draw anything positive from adjusting to J’s decline. Our friends, B and T were visiting a couple of weeks ago when our kids also were there. J was working on moving her clothes to the boxes. B and T signaled to the kids to just go with it. Learning when not to resist and to go with what’s happening in J’s Alzheimer’s world is a powerful lesson, as is discerning when to bring in staff to address the problem. 

As the Phillies manager Pete Mackanin said recently, there is no point in giving yourself a heart attack. “I’m not having a heart attack. I don’t have to like being patient, but I am anyway.”  Me, too. 

Scenes from the caregiving front

I’m sitting at work a little after noon today and the phone rings. It’s J. As usual, she’s speaking in broken phrases, but she has my attention.  J has Alzheimer’s disease and lives in a continuing care retirement community.  She almost never calls me, and usually only when she’s in distress.  She manages to get out, “I have a problem.”  “Do you need something?” “Yes.” But what? I suggest a few things but don’t get an answer I can understand.

Next I call the nursing office on her floor.  The nurse says she was in a couple of days ago asking for toothpaste.  That’s funny.  Not that long ago, I bought her two large tubes.  A couple of days after that, friends who had visited J let me know that she didn’t have any toothpaste when they were there, so they kindly got her some.  Where is the toothpaste going?  Could it be the same place as the many articles that disappeared around the house when she was still there?

I ask the nurse to visit J’s room and call me back.  Before that happens, my phone rings.  It’s J again.  Twice in one day!  “Is everything ok?” “Yes,” she says.  “Do you need something?”  “Yes.”  “Toothpaste?”  “Yes.”  I’m not convinced.

No one calls me back, so I keep dialing until someone picks up in the nurses’ office.  I speak to Gwen, who tells me that J was walking around yesterday carrying an empty tube.  She was offered the off-brand stuff the CCRC carries.  She looked at it, said, “Huh,” and walked away.  Toothpaste it is.

While I was waiting for the call back from the nurse, I thought about the weekend after last when I visited J.  She has plenty of hoodies and sweaters, but when I was leaving, she hugged herself and mimicked shivers.  “Are you cold?”  “Yes,” she said, eyeing my favorite hoodie from Ghost Ranch in New Mexico.  “Let’s go up to your room.  You have plenty of hoodies there.”  “No, I don’t.”  (Let’s not even mention the one I bought her at the San Diego Zoo, which she now insists we never visited.)  Off came my hoodie and onto her.  Big smile.

The next week I go see J.  My hoodie, as well as two others, lay in a heap on her closet floor.  I pick mine up.  “Do you like this?”  “No,” J says, with a look of disgust.  “Do you mind if I take it?”  “No.”

I’m not proud of myself, especially since I preach to our children that things don’t really matter.  But I have to admit I’m happy to have the hoodie back.  I have always thought that having children made me less selfish.  I can’t say that having a spouse with Alzheimer’s disease has the same effect.

So I’m going to focus on what her face is likely to look like tomorrow when her brother produces the Crest.  Another big smile.

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. 

The Perfect Visit

the-visit

A couple of posts ago, I came down hard on people who don’t visit loved ones with Alzheimer’s disease.  My motivation was mostly to share that, at that moment, I felt quite alone in my care-giving responsibilities instead of being part of a team.  It wasn’t a call to arms, and yet, boy, have my friends and family responded.  J has had more visitors in the last month than I ever remember before, and I am very grateful.

I also tried to communicate that a visit is not only joyous for the person with Alzheimer’s disease, but it can be enormously satisfying to the visitor as well.  Our friend, TP, who visited last weekend, says it better than I can.  Here’s her report:

I wanted to share with you my visit with J today.  It was pretty perfect. I stopped by around 10:30 just to visit. I was on my way back from a tennis game so B wasn’t with me.  When she opened her door, she  was very happy to see me. I wasn’t sure what we’d do, but I had her show me the terrace. Then I thought maybe we could go out for coffee. She said, “Great.” So we went to the Dunkin’ Donuts.  Once there, I saw there weren’t tables but there was a little bar-like area where you could stand and look outside. So we did that. She was happy with her coffee. It was nice and sunny.  Then all of a sudden, a flock of birds sailed by. That was cool and J was happy to watch them.  I showed her some photos from this nice site ( Planeta tierra) with beautiful birds and animals.  She loved the photos.  It was very pleasant. So we finished our coffee and walked outside ( in the freezing cold).  There was a dollar store and I asked J if she wanted to go and she said, “Sure.”  So we did.  Cruised around. I asked her if she needed anything. No answer. But she stopped at look at some stuff , said something I didn’t understand and we left. But outside she turned back and said (or motioned) something like teeth. So we went with toothbrush or toothpaste and bingo — toothpaste.  So we went back inside, found the toothpaste.  She wanted a 2-pack so she would have a spare (more or less got that from the non-verbals). We got the toothpaste and it was a total win!  She was happy, we had a nice time, and I got her back to the warmth.
Our son, T, and I visited later the same day.  J didn’t remember the time she spent with TP, but that made it no less precious.  She did remember the toothpaste.  In fact, she happily took me into the bathroom three times to show it to me.
T and I had brought the game of Life with us and figured one of us would team up with J.  It’s an old set, and when we opened it up, the spinner was missing and we couldn’t play.  J, who often has trouble with verbal communications now, made us understand that it didn’t matter.  “I just like to spend time with you,” she said clear as a bell.