Reclaiming memories

Sprinting through the Dallas airport to make a connection yesterday, I was reminded of another run through this airport 33 years ago.

It was the summer of 1986 and J, her sister, nephew and I were going to west Texas to visit her aunts. That was how I found myself urging them on as we dashed from Terminal A to Terminal D and barely made the flight.

It was a memorable visit. The flat straight-arrow road from Midland-Odessa to Pecos. The warmth of J’s family. The chiles rellenos so good that we brought home as many as we could carry. And, of course, the rodeo which, other than family, is the only reason to ever visit Pecos.

J’s aunts are long gone, J’s sister died four years ago, and now J too is gone. But as I was told when we were going through J’s decline from Alzheimer’s disease, the good memories are now more accessible. Like flying through an airport in anticipation of time together and a new adventure.

The living must go on living

More than a year ago, I signed up for an Adriatic cruise. Ten days before my departure date, J was placed in hospice care.

J has stabilized and here I am on a plane headed for Venice, but not without mixed feelings. I have strongly urged our adult children that the living must go on living. The hospice nurse has urged me on, stating with confidence (although she never knew her before Alzheimer’s disease) that J would want me to go.

Flaps up. Fingers crossed. Stay tuned.

Trust the Unfolding

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The social worker has come and gone and we are waiting for J’s level of care assessment.  In the meantime, I have been looking at continuing care communities.  The process is excruciating.

A continuing care community is a place that has all levels of care, including independent living, assisted living, a specialized dementia unit and skilled nursing care.  This is important because J and I only have enough money for two to two-and-a-half years of private pay.  After that, J will be on Medicaid, and we need a facility that will not kick her out when that happens.  We live in a large urban area and this is not easy to find.  So far, we only have two options.  I have looked at one and will look at the other tomorrow.  As with most things in life, they each have their plusses and minuses.

On the advice of a friend who is a therapist at a continuing care community, I broached the subject of moving with J.  The response was not good.  Hence, the excruciating nature of the exercise.  And yet, I am pretty sure keeping J at home is not the best thing at this stage.  She has various caregivers three days a week, and goes to day care two days a week.  She seems to very much enjoy the day care, and we could increase her days there.  But we are getting to the point where I worry about leaving her alone at all.  I have found the key in the door multiple times.  I worry about her letting someone in when she’s alone.  I worry about her being bored.  And she resists having more at-home help than we already do.

Surprisingly, both of our children think it’s time for her to transition to a residential setting.  They think she will ultimately be happier there, and I’m sure they worry about me.  So we will see what the assessment says, and take it from there.

In the meantime, it seems that our son’s girlfriend is going to take our seven-year-old dog.  As I have written in a prior blog post, J can no longer take care of him, and it is too much for me to take on (although I have now been doing it for a while).  That will be a great weight off my shoulders.

And I am leaving on a long-planned two-week trip to China with my sister in three weeks and my plan for J’s care has just fallen through.  I am working on alternatives.  At least I have three weeks to tee things up.

Is it any wonder that I, who am invariably calm and in control, have been anxious and on the brink of tears for the last few days?

One of my rabbi’s stock phrases is to “trust the unfolding.”  I have been grabbing onto that thought and also dipping into Psalms, which I love.  I am in the process of reading the Psalms in order.  Today’s reading ends, “As for me, I am lowly and needy.  G-d, O hasten to me!  My help, the one who frees me You are.  Lord, do not delay.”  (Psalm 70:6-7)  May it be so.

 

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.

 

Traveling with J

  
When our children were small, I used to joke that we didn’t go on vacation; we traveled with our children. J and I are in San Diego to celebrate her 65th birthday, and this trip has some of the same qualities. J, who has Alzheimer’s disease, couldn’t, of course, pack her own bag, and she would have left it behind several times had I not been on top of it. She can’t meaningfully participate in deciding our daily activities. 

But she seems to be having a good time. Yesterday, we took a trolley ride around town and toured Old Town, the Gaslamp District and Coronado.  The weather was perfect. We have eaten almost every meal outside. 

And yet it is lonely for me. J doesn’t converse any more. My pleasure derives from her apparent happiness at seeing new things. 

I can’t help thinking back to our first trip together in 1984. We went to San Francisco and stayed at a lovely bed and breakfast above a Basque restaurant in North Beach. We didn’t have much money, so we stuffed ourselves each morning on the sourdough bread, hard-boiled eggs and cheese that came with the room so we wouldn’t have to eat again until evening. I took J to see the redwoods and we tried to take a picture of ourselves with the magnificent trees. It was well before selfies and I set up the automatic timer on my camera. For some reason, we thought we had to crouch. And so we have a photo of us bent down in the corner while the redwoods soar. It always makes us laugh. 

That also was the trip where we went to an amusement park in Santa Cruz with a renown wooden roller coaster. Our relationship was so young that J didn’t tell me that roller coasters terrified her, and I didn’t tell her that Ferris wheels make me sick. 

I also can’t help thinking that this is probably our last trip that involves airplane travel. Even though we were allowed to board early, navigating air travel is highly confusing and anxiety-provoking for J.  We are staying at a friend’s house, and J has difficulty finding her way around. One more way J’s world literally gets smaller because of her disease. 

Monday is J’s birthday and we plan to go to the zoo and have a nice dinner in La Jolla. The sunset and ocean view should compensate for the lack of conversation.  At least, that is my great hope. 

The Long and Winding Road

 I love to travel. I’ve been to five continents and 47 states, to the top of Mt. Kilimanjaro and the bottom of the Grand Canyon. Over 25-plus years, J was by my side for most of these adventures.  Although J was usually ready to go home before I was, she was still game to see something new, learn about a different culture, eat good food and meet new people – at least for three or four days.

If we hadn’t traveled together, we never would have met the couple at the next table in the San Francisco restaurant.  Together we ventured to Martuni’s bar, where neighborhood folks belt Broadway songs like Ethel Merman.  We never would have been followed by menacing bison in Wyoming and lived to tell the tale.  We never would have sat at a sidewalk pub in London and commented on the hats as couples came up from the Tube on their way to a garden party at Buckingham Palace.

Imagine my surprise then when about six or seven years ago, J started expressing that she didn’t like to travel.  Africa in 2009 was my dream trip and she didn’t want to go.  I went with our daughter and was hurt when J didn’t want to see our pictures or hear about our trip.

J’s Alzheimer’s diagnosis came in early 2010.  I began to understand that J’s new reluctance to travel stemmed from anxiety about the unfamiliar and was not lack of interest in me or my activities. In 2011, our daughter was heading to Israel, which for many years had been at the top of my very lengthy list of places I longed to go. I assumed that, once again, I’d be on the road without J.

But our children intervened.  Son T and daughter L sat J down and said, “Mama, sometimes when you’re in a relationship, you have to do things you otherwise wouldn’t want to do. You shouldn’t make Mom go to Israel without you.”  So J went for part of the trip and we had a wonderful time exploring Jerusalem just the two of us.  We prayed at the Western Wall, observed the marks left by Crusaders on the wall of the Church of the Holy Sepulchre and visited the Temple Mount.  The compromise was that J would leave after a week and L and I would continue south, where I crossed into Egypt and climbed Mt. Sinai.

Meanwhile, J’s plane was diverted because of bad weather, and she had quite the adventure getting home, but she got there. (Of course, that she remembers!)

Traveling with J is still a joy because she is always very much in the moment and even more enthusiastic about the unexpected treasures found in new places.

J probably won’t be with me when I get to Machu Picchu, but we are finding ways to continue to travel together and I am allowing myself to travel apart when that makes more sense.   Once again I have learned that Alzheimer’s disease does not have to end activities we previously enjoyed together.

Maybe you’ll catch us in San Diego later this year. J says she wants to see the zoo.