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

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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.

 

Love endures 

An acquaintance emailed me a couple of weeks ago and asked for a reference to J’s Alzheimer’s doctor. I didn’t think anything of it. I get such requests often and provide the requested information. 

About 10 days later I was in services and the same man said something publicly about having a medical near miss. I didn’t connect any dots. 

He sought me out after services and said, “You must have figured it out.”  I looked at him blankly. He told me he had been diagnosed with Alzheimer’s disease, but it had been a false alarm. “I’ve never been so relieved in my life,” he said. “My mind is so important to me.  I couldn’t go on not being me.”

Outwardly, I was appropriate and compassionate. Inside, I was boiling. How dare he!  He unthinkingly was telling me that without high cognitive function, J is no longer J. While he didn’t use these words, he essentially was saying her existence is meaningless. 

I disagree. At this stage in her illness, it is difficult to tell what J understands and what she doesn’t. Does she know me and the kids?  Who knows?  Sometimes she seems to be with us and sometimes she has little affect. Does this mean her life is worthless?  I don’t think so. 

Our daughter recently got into medical school and we took J out to celebrate. We have no idea whether she understood the news. We are certain, however, that she knew we were really happy. And so she was really happy.  She beamed. 

Whatever has happened and will happen, we also are certain that J feels loves and exudes love. So don’t tell me that Alzheimer’s disease is the worst thing that can ever happen to a person or a family. If I know nothing else, I know love endures. 

I have no better gift to give you all as we enter 2017. 

I can’t do it alone

I’m at that point. I assume all caregivers get here. I’m feeling very alone.

My wife, J, was diagnosed with Alzheimer’s disease in January 2010. She went into assisted living in May of this year. We got past Thanksgiving with J not coming home. 

Other than a woman I pay to walk with J once a week, and J’s brother and sister-in-law, who visit nearly every month, I am the only one who regularly visits J, week in and week out. I am usually accompanied by my friend, P.  Our daughter comes by, but not on any schedule. Our son can only bring himself to visit occasionally.  Friends and acquaintances and other family members make the effort, but episodically.

I’m also the one who has to communicate with the doctors, and make sure the medicine doesn’t run out, and interface with the caregivers and monitor the finances.  I mostly perform these tasks with an open heart, but it can be wearing, especially worrying whether the money will hold out and wondering what the future will look like.

I get why more people don’t visit more regularly. Alzheimer’s disease makes everyone uncomfortable. It is many people’s worst fear. They don’t know how to relate to someone they used to know as sharp and witty who now sometimes has trouble forming a sentence. Who wants to see someone who once contributed to running a large house living in a single room in an institutional setting, no matter how lovely?

Also, our lives are ridiculously busy.  There never seems to be enough time to do what we must do, let alone what we want to do or think we should do.

And yet.

In the Jewish tradition, it is a mitzvah (a good deed) to visit the sick. Indeed, G-d himself visited Abraham when he was weak and ill.  Maimonides, the 12th century Jewish philosopher, found the source of the commandment to visit the sick in the Biblical injunction to “love your fellow as yourself.”

The best visitors summon up a good mood, even if they feel sad.  You are there to lift J’s spirits.  Bring flowers, or some apples, or a magazine.  Bring someone else with you.  It is easier to visit with a companion, and it is easier for J, because she can listen to the conversation and chime in when she can.  You can cry after you leave.  I usually do.

I don’t want to sound resentful or ungrateful to everyone who has done so much for us for so long.  But I do want to remind everyone who knows someone with Alzheimer’s that your visits matter–even if that person forgets you were there that day. During the time  you visit, you make that person’s day much brighter than it would have been without you. And it will do you good, too. When you brighten someone else’s day, you brighten your own.

 

 

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. 

The Downward Spiral

old-brick-stone-metal-spiral-staircase

The administrator at J’s continuing care retirement community left a cheery message, “There is absolutely no emergency, but when you get a chance, please give me a call. I want to shoot something by you.”  Despite the casual tone, I have been on this earth long enough to know it is never good when the CCRC administrator calls. I returned the call.

I was told that J, my 66-year-old wife with Alzheimer’s disease, has been exhibiting some “bizarre” behaviors. She had walked stark naked to an outdoor balcony. She was hiding things in the library. She had snatched medical papers from another resident as he walked down the hall and looked perplexed when he said they were his. The administrator didn’t seem overly concerned. As we talked, it became clear that she was obligated to tell me that J’s primary care doctor had been contacted. The administrator suggested tests to determine whether J had a urinary tract infection.

I emailed back and forth with the primary care physician, and I called her psychiatrist/neurologist. Neither thought any tests were necessary. This is not a UTI. This is J’s path through Alzheimer’s disease.

The report from the CCRC administrator was somewhat consistent with my recent experience.  The last time I saw J, she was not particularly engaged. She didn’t seem to recognize the friend who was with us. She stared across the table at me. This was before Election Day, and she brightened up only at talk of the then-upcoming election.

On Sunday, I took her to brunch for her birthday with our two adult children. She perked up at the offer of a Bloody Mary but otherwise had a fairly flat affect. We went back to our daughter’s apartment for cake.   We had taken an Uber, and J had gone for the front seat. During the ride, she looked back at me and our daughter and looked alarmed. She extended her index finger and mimicked a gun. Was our Uber driver packing a pistol?  When I asked her after we got out of the car, she exclaimed, “No!”

At our daughter’s apartment, she got a little agitated and said, “It died.”  She motioned like a machine gun – rat-a-tat-tat, and again said, “It just died.” “Are you talking about the election?” I asked. She had firmly and enthusiastically supported Hillary Clinton, and I was afraid the results may have depressed her. “No!”  I have no idea how this popped into my head. “Are you talking about your hair dryer?” “Yes!”

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J was so happy to be understood. It must be enormously frustrating for her to have thoughts and not be able to express them. Our daughter exclaimed, “That’s amazing. It was just like charades.”

The afternoon ended well, after I bought J a new hair dryer.  I know that J will continue to change and we will have to adjust. So long as a Bloody Mary or a hair dryer can bring a smile to J’s face, we should be grateful.