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.

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.

No White Coat for J

White-Coat-Ceremonies

Our daughter, L, has wanted to be a doctor since at least grade school.  Her road to medical school was not an easy one, but she made it.  Her white coat ceremony should have been a day of unalloyed joy for her and me — and J.

It was a wonderful day and I am so, so proud of our daughter, but J wasn’t there.

Eight years into our struggle with Alzheimer’s disease, there is no doubt that was the right call.  J couldn’t have sat through the 45-minute ceremony, or understood what was going on.  (For those who aren’t familiar, a white coat ceremony happens early in the first year of medical school.  The students receive the white coats they will wear throughout their training and are socialized about the importance of patient-centric care.)  J could not have expressed her pride and joy, or chatted with L’s new colleagues and their parents.

Losing the person who was is very hard.

When someone in my life dies, I always have that realization that the world is going on without her; that she doesn’t know the ways the world and those in it are changing.  The same is true of J.  She doesn’t really know what’s going on in the world (although she does say, “Trump!” with a disapproving look on her face if others are discussing politics); nor does she know what’s happening in my life or the lives of our children.

The only consolation is that J has a new life, too.  I’m told she attends the daily morning meeting at the memory care unit where she lives and thinks she’s one of the paid caregivers.  Her photo hangs in the hall under the label, “Most Caring.”

And J’s lack of consciousness about the changes in her loved ones and the world is a blessing because she doesn’t feel the loss we feel.  

 

 

To Life!

Like a kid with a scab to pick, I couldn’t stop myself from asking The Question: Do you know who I am?

“Gggrwhhh.  Bltxfthhhhh.  Pthrrrx.  Lawyer.  Zhgggfff.  Gluuchhhh.”

A few minutes later, I casually dropped, “Do you know my name?”  J made direct eye contact and said matter-of-factly, “I really don’t.” “My name is A.”  “Of course.”  “Are you married?” “No,” she said, with a hint of incredulity. 

So the moment has happened: J has only a tenuous grasp on who I am after 30-plus years together. Such are the ravages of Alzheimer’s disease. 

Oddly, my heart did not break. This is just another milepost on the Alzheimer’s road. 

Instead, my heart turned to last week’s Torah reading, the final portion before starting the new year. Moses is giving his last instructions before the Israelites will cross into the Promised Land, a place he will not go. Instead of expressing bitterness, he lays before the Israelites the choices they must make to either embrace blessings or curses. “I call heaven and earth to witness against you this day: I have put before you life and death, blessing and curse. Choose life — if you and your offspring would live.”

As we all enter 5778, I wish for each of us to choose life. J still does, and so do I.

Love endures II

Having blogged now for more than two years and 100 posts, I worry about repeating myself. But this bears repeating. 

Love endures.

As I reported in my last blog, I’ve stopped taking J out for meals and have instead started taking her on errands. The trip to Discount Shoe Warehouse went well. She was able to express preferences for the shoes she wanted and we left with two new pairs.

Next up was a trip to the dollar store. My workplace is collecting supplies for a local school. (Don’t get me started on the need to donate basics like pencils and paper to public schools.)  J taught 4th and 5th grade for 12 years before her Alzheimer’s diagnosis, so I thought picking items to donate would engage her. I was wrong. She was fine with being at the dollar store, but she had no interest in shopping for gifts for children she doesn’t know. I don’t think she understood what we were doing.

That said, as often is the case, she clearly enjoyed going out with me and our daughter. Does she know who we are?  I think so, but who knows?

She has, however, gotten more loving.  She was always a hugger. Now, the hugs come even more freely. And not just to me or our kids or friends who visit. She hugs the staff people at her continuing care retirement community. She hugs her doctor. Given half a chance, she would hug the check-out person at DSW. There is also a sweetness that was hidden before.

Our love has changed. The eros is long gone. J has been unable to be an equal partner for more than seven years. We live separately now and largely have separate lives.  Our love has changed, and yet, it is still strong.

As one of my rabbis wrote this week, “Judaism teaches that a soul is never damaged. The body perhaps, the psyche perhaps, but the inner core of goodness that is the soul never. The essence always remains intact.”

As the disease progresses, J’s inner core of goodness is more manifest. Love is the only possible response.

Then and now


A provocative article in the Alzheimer’s Reading Room a couple of weeks ago raised the propriety of advance health care directives to allow withholding food and drink to someone who develops dementia.  (See link below.) The issue is whether a person should be able to choose, before onset, to end her life rather than suffer with Alzheimer’s disease or similar ailments. 

As an Alzheimer’s caregiver, honoring such directives would make me extremely uncomfortable. I approach the question from the point of view of what is best for the person with dementia at the time.  

My wife, J, was diagnosed with dementia in January 2011 and, in retrospect, was exhibiting symptoms well before that. Her ability to care for herself, understand and communicate continue to diminish. 

Yet, as I have written before, she very much enjoys life. Indeed, in some ways, she enjoys it more than ever because she has little to no stress. Gone are prior concerns about her job or caring for children or dogs. Now that she lives in a memory care unit, she doesn’t even have to worry about finding her way around her continuing care retirement community.  At her last doctor’s appointment, her pulse and blood pressure were those of a healthy 20-year-old. 

Go to visit and she’ll give you a big hug (even if she never met you before.)  Take her for a walk and she’ll delight in all she sees. Turn on some music and she’ll bop and sway. 

True, her old self might be horrified if she could see her current condition. But she can’t. 

Would it be fair to the current J to allow the former J to determine the value of her life now?  I think not. 

http://www.alzheimersreadingroom.com/2017/07/alzheimers-care-choosing-an-end-of-life-strategy.html?m=1

Woman plans, G-d laughs

one-night-emergency-room-merl

This is my first week back from vacation and I had planned a blog post about the wonderful people who visited J while I was gone.

Yesterday, our son and I had planned to take J to see Wonder Woman and to one of her favorite neighborhood restaurants.

Instead, we spent yesterday afternoon in the emergency room and I’m writing this.

It all started two afternoons ago when I got a call from J’s continuing care retirement community that she was leaning to her left side while walking.  They ruled out a stroke — always a good outcome — and had a call into her primary care doctor.  A nurse from the CCRC called me again at 7:30 pm that night.  He said they hadn’t heard from the doctor.  (Later, there was a lot of finger-pointing as to whether the doctor’s office or CCRC had dropped the ball.  I tend to believe the nurse at my doctor’s office, especially since the CCRC nurse admitted she didn’t even try to reach the doctor’s office until after noon yesterday.)  I suggested giving her Tylenol, which they did.

What I kept to myself was my anxiety not knowing whether J had a serious problem or not.  But there was nothing for me to do until morning.

I shuttled between calls with the CCRC and the doctor’s office the next morning.  By the time our son, T, and I were at the CCRC for our planned visit, everyone agreed J should go to the emergency room.  It is hard to interpret whether J was feeling pain or not, but when we saw her around 2 pm, she looked like the leaning Tower of Pisa when she tried to walk.

Leaning-Tower-Pisa-Italy-Photos-Pictures-27694

Several hours of waiting ensued at the ER before J was triaged, coaxed into giving a urine sample and x-rayed.  My main concern was whether she had suffered a fracture.

The x-ray was normal, but the urine sample revealed a urinary tract infection.  It doesn’t surprise me that UTIs are common in Alzheimer’s patients.  Hygiene can be an issue.  What did surprise me is that a UTI could affect her gait.  Who knew that poor motor skills, loss of coordination and falling could result from a UTI?

Six hours after arrival at the ER, we were back at J’s CCRC with antibiotics in hand; also a sandwich, since we didn’t want to subject J to dinner in a restaurant, given her restlessness after so long in the ER.  Plus, the kitchen at the CCRC was closed.

So much for our fun evening out.

When I spoke to J this morning, she sounded very cheery.  Surely she remembered nothing about our ER adventure.  That is one advantage of Alzheimer’s disease.

And to those who visited J while I was in Alaska, thank you.  You know who you are.

 

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. 

Yep, that’s my Aunt J

boomerang-kayak
This is a guest column written by J’s niece, who recently visited:
On Sunday, visited my Aunt J, who is now in an assisted living facility, living in Alzheimer’s. I say “living in” because that’s what it is. She is IN a place of her own and no one ever knows whether it’s distressful for her or devoid of any stress and worry….do memories keep us on edge and more aware of ourselves or can not having many of them lighten our cerebral load? Who knows. There’s many arguments about forgetting things that we wish not to remember but who of us WANT to suddenly be robbed of that?
I haven’t always maintained a close relationship with my Aunt J. I didn’t have a difficult one, either. She was still living at home with my grandparents, finishing high school and entering college when I was just a little person, 5, 6,7, also living with my grandparents. My Christmas presents would be under the tree right next to hers and Christmas mornings, we would all be together, unwrapping our presents…me with my Chrissy and Velvet dolls, her with her clothes and books more befitting a young woman….
I do remember that I liked my Aunt J. I remember a lot of laughter in my grandparents home as a young person. She looked out for me like a bigger sister would and she always had a calming persona. And smart. Even then, at a young age, she was so smart and I could sense it.
I remember we, my grandparents and I, visited her in Boston where she attended Wellesley. I remember kayaking with her and I remember being in awe of her, so young and pretty with her long, brown hair, no makeup but fresh pretty face and smile. She was a woman I looked up to. And then, poof. Our lives separated. I was shipped off to live with my father and his new wife and just didn’t see J for such a long time. Here and there, sporadically, but for the most part, I didn’t see her.
Until I turned 13 or 14. I was troubled. My father and his wife were in a dysfunctional relationship. I, at that young an age, recognized my father’s philandering going on and was the emotional punching bag for his wife. She was miserable and she hated that she was left at home with her husband’s child while he was off doing god knows what or who. I acted out. Ran away a couple times and found out later that my Aunt J, learning of this somehow, approached my father and mother (her sister) and offered to try and help me. She offered me a home in Charlotte, North Carolina where she was living with her partner, A. I wasn’t part of the conversation or decision-making, I just know off I went to live with J and A in Charlotte.
It was a very cute little Cape Cod with cool stuff in the house, lots of good cooking and constant stream of the McGarrigle Sisters, Joni Mitchell, Melanie and other great chick music. I went to school and plugged along, but ended up presenting teenage problems for them too that they couldn’t handle. So I was shipped off again, back to my father who was leaving for Athens, Greece to do a two-year stint.
I never felt like my time with J and A was regretful, I have fond memories of being there. And yesterday, while I was visiting her, I told her a few stories about my stay with her, things that if she were completely cognizant, she would have chuckled at too, but alas, she does not have those memories stored away. She truly did not entirely know who I was so she couldn’t put the story together in her own mind’s eye.
She and I looked at photos she has in her room of her parents and her siblings. She pointed to my mother in the photo and said a couple times ,“She’s dead. she’s dead.” I broke. I began to cry and tell J I missed my mother and she just stared at me blankly. Again, is it better to remember and feel the pain of loss or was she better off for being so matter-of-fact about it and not FEELING the pain of it? Who knows.
I can only hope that before this nasty disease that robs us of our memories settled into my Aunt J, that I provided HER with some decent memories of me. I hope she had no regrets about taking me into her life for a period of time and trying to help me. I hope she at some point realized that she absolutely did the best she could and it wasn’t long into my adulthood that I recognized that about her and appreciated that about her. Truth be told, that little bit of time I was with her, I was safer. I was happier. It was the respite I needed.
J and I walked around the neighborhood yesterday, and I chattered on and on about stuff, catching myself a couple times asking “do you remember…..?” which I realize wasn’t fair. But she was the same forthright person she’s always been and would give me a firm “no.” I told her stories about my grandchildren, told her about my job, asked her about her children and her wife. She wasn’t able to finish too many sentences but she wanted to converse with me. She held my hand a couple times which I’d like to believe was momentary recognition………or just gratitude that I was there, a visitor.
She looks like the J I’ve always known. She was warm and pleasant and towards the end, as we sat in the wooden gliders on the large porch of this place, she suddenly raised her fist and said “Hillary!”
Yep, that’s my Aunt J.

Inside the Sandwich

J and I had lunch on Saturday with an old friend who is caring for her friend, F, with Alzheimer’s disease.  F has been in residential care for four years. She has “graduated” from assisted living, also known as personal care, to a dedicated Alzheimer’s floor. She can no longer dress herself.

Then, on Saturday night, I had dinner with old friends of one of my friends.  P, the husband, has early onset Alzheimer’s disease. He hung out with us while his wife was off officiating at a wedding. He has some word retrieval problems and said his children are much younger than they actually are, but he speaks in complete sentences and know about important future events, including one of his children’s weddings and an upcoming trip to Australia and New Zealand.

These visits made me feel like the inside of a sandwich, surrounded by where J and I have been and, sadly, where we are going.  J can still dress herself, but she has no concept of the past or the future.  I recently mentioned that her birthday is coming up.  Her response was, “Really?”  Alzheimer’s moves in only one inexorable direction.  There is no getting better.

That realization, which I have again and again, brought childbirth to mind. Twenty three years ago, I delivering our daughter without drugs.  At each moment I considered whether I could stand the pain I was feeling then. If the answer was yes, I went on without the epidural. (Fear of a needle in my back was also a big motivation.)

In my current role as an Alzheimer’s caregiver, I am taking the same approach. The pain is always there, whether it is on the surface or hidden in deep recesses.

And then I look up and see the shimmering sliver of the moon.  Or the pink sky behind the sycamore trees I pass every morning.  And I know that J still appreciates the beauty all around us.  So I stand the pain.  What choice do I have?