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.

Free Peruvian Days

I recently got home from nine days of trekking in Peru. My daughter and I hiked the Salkantay Trail, a less traveled alternative to the Inca Trail to Machu Picchu. We scaled 15,000 feet, saw glaciers, learned about Inca civilization and ate better than any human being has a right to eat. (Who knew that avocado on a roll could be so delicious?)

Even better than the sights and sounds and time, however, was that the trip was entirely anxiety free.

Since J was diagnosed with Alzheimer’s disease in 2011, I have gone away on a number of wonderful vacations, but I have always been waiting for a shoe to drop.  When J still lived at home, I once got a call that J’s caregiver had lost her.  Since J has lived in the memory care unit of a  continuing care retirement community, I’ve been tracked down on a silent retreat over a medication issue.  I instantly recognize the CCRC phone number when it lights up my phone.  They don’t usually call with good news.

This trip was different.  There were days when no one could have reached me, even if they tried.  The cell network thankfully doesn’t reach remote areas accessible only on foot.  Moreover, the CCRC nurses knew to call our 27-year-old son if anything happened that required family input.  J’s brother served as our son’s back-up if the CCRC couldn’t find him.  I am grateful to them both.

I returned to caregiving mentally refreshed and confident that I can handle whatever comes next with J.  To the other caregivers out there, I highly recommend taking a respite.  There is even funding available if taking a few days off would create a financial hardship.  (See https://www.seniorly.com/respite-care/articles/caregiver-respite-grants-for-elderly-loved-ones)  You owe it not only to yourself, but to your loved one with Alzheimer’s disease.

Slow boat to China

  
I’m on the Yangtze River, having left a week ago for the trip of a lifetime. I’ve walked the Great Wall and seen the Terracotta Soldiers. The Three Gorges and Shanghai await. 

  
I left a six-page document detailing J’s schedule, routine, medications and important contacts. Everything at home is going quite smoothly.  As a bonus, our daughter took the first week of caregiving and had a great time.  

I am so blessed to have a village taking care of J and am enjoying the break. 

Rounding First

  
So far, so good. I am home from a business trip that started on Wednesday. While I have been gone, J, who has Alzheimer’s disease, has been cared for by a village of friends and family. 

No one missed a beat and J has been remarkably upbeat. 

Very early tomorrow, I leave for a week of mandatory job-related education. I have emptied one suitcase and am on my third load of laundry. At 6:45 am, I’ll be back out the door, returning on Saturday, Jan. 16. 

When I left last week, J said: “I have a lot of people.”  Indeed. 

10 Days Away

I am leaving tomorrow for a business trip, returning Saturday evening. Then I’m leaving again for a mandatory work-related education seminar until Saturday, January 16. 

J’s brother is coming to stay for three nights, for which I am grateful. For the rest of the time, S, the student who lives with us, is going to place the daily Post-its on the fridge and make sure J takes her morning pills.  

 (Examples of the Post-its)

A different person is having dinner with J every night. The new Monday caregiver, M, will come over every evening to make sure J takes her evening pills, wears her dental night guard and gets ready for bed (instead of falling asleep on the bed in her clothes.)
I am anxious this will all work out, and I am hopeful. Fingers crossed. 

My Wandering Star

J and I are on our way home from a great day in New York, seeing the Radio City Christmas Spectacular with friends and enjoying a delicious Italian lunch. (Yes, even Jewish girls can appreciate a Christmas show, especially when it involves the high-kicking Rockettes, a gaggle of Santas and snowflake drones floating around the theater.)

  

It wasn’t always clear the day would end so well. Yesterday, I told J we were going to New York today and tried to determine out loud when we would need to wake up to get ready, walk the dog and drive to the train station. Big mistake because, unbeknownst to me, this made J anxious.

I was doing my usual million and one errands – paying bills on the third floor, doing laundry on the first floor. At 9:45 pm, I thought J was in the bedroom on the second floor when I heard the front door slam. Down the stairs I flew. J and the dog were gone. In the rain. I tried J’s cell phone and heard it ring in the house. 

We live in a nice but very urban area where dangers lurk in the dark of night. Fortunately, our dog is a rescue pit bull who looks fierce. (Appearances can be deceiving. He is actually very sweet.)

  
I quickly put on shoes, jumped in the car and made a loop around the neighborhood. No J. I started on a second loop in the other direction. There was J and the dog, coming up the street. 

I did ask J in exasperation what she was doing and where she thought she was going.  She couldn’t communicate a coherent response. I firmly believe she thought we were leaving for New York and she had to walk the dog. 

Next time we have to go somewhere, I won’t tell her until the morning of. It will be easier on my heart. 

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.

 

The Good, the Bad and the Ugly

WARNING: This post touches on bowel incontinence. If that makes you uncomfortable, you may want to skip it. 

Yesterday was J’s birthday and it was nearly perfect. J had said she wanted to see the San Diego Zoo, and that is exactly what we did.  The highlight was a little monkey who was intent on retrieving some food on the other side of a chain link fence. Talk about persistence!  J delighted in watching the monkey stick its arm through the fence and reach under a tarp for hidden morsels. Of course we also saw the pandas and gorillas and tigers and many gorgeous birds. 

Later that afternoon, we headed to La Jolla, where we watched the sun set and then had an over-the-top four-course dinner. Both our children, J’s brother and sister-in-law and many friends had called that day. That prompted reminiscences.  It was a warm and loving evening, despite the need for heaters and blankets while we watched the first star come out. 

The prior day was not so easy. J has been having a diarrhea problem for the past three or four months. Diarrhea is a known side effect of Aricept, one of the few medications on the market for Alzheimer’s disease. I had discussed the issue with J’s neurologist/psychiatrist and her internist. We decided to stop Aricept and start Namenda, another Alzheimer’s medication without this particular side effect. J seemed to be tolerating the Namenda well and I was under the impression the diarrhea had stopped. 

Until we were walking on Sunday in Balboa Park.  J asked if I had a tissue. I didn’t.  I noticed her fingers were brown, but we were walking in a park, so I thought (or perhaps naively hoped) it was dirt. I asked J what was on her fingers. “It’s shit.”  Fortunately, we were close to a bathroom. I went in the stall with J and realized for the first time that she is no longer able to clean herself thoroughly. That led to a supervised bath and shower at the house where we were staying and a trip to the market for wet wipes.  I now go into the bathroom with J and make sure she is clean. J does not always welcome me there. 

I also have had to give much more direction to her about getting dressed and other common tasks, like how to make a bed. 

These realizations are going to have to lead to changes at home as well. I need to keep closer watch, and need more help. I’m still working on that. 

The San Diego trip, however, was more than worth it. When we got home this evening, J said, “I couldn’t …,” trailing off after those few words.   That translation was easy. “I couldn’t have done it without you.”  That will get me through many a tough day. 

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.