After a month of client trips, to Seattle, England, New Jersey, and Chicago, I finally am on vacation for a week and half. Susan went up to Portland to see our grandson Reid. I faced an open weekend. What called to me was driving to Sacramento to see my 91 year-old mother and visit John, my brother, who lives in Placerville. This post was stimulated by all the reflections about aging, Mom, love and the surprises that wait for us in the midst of forgetfulness.
Visiting Mom in Sacramento
Dorothy, my mother, lives at Sunrise Assisted Living in Sacramento. I am her “durable power of attorney” and take care of all her business affairs now that she has no short-term memory and fairly advanced dementia. My brother John and his wife Anne, who work in Sacramento, take care of the personal care assistance, health issues, and any issues with Sunrise. But the combo of Sunrise costs and 24-hour care are testing Mom’s assets and we need to figure out an alternative. So talking this all over with John was one of the tasks I needed to complete. I also really wanted to see Mom. It had been a while.
My observing ego could tell I was resisting going over. Real, gritty family life is so complex, especially around challenges of health and old age. I don’t need to go see Sicko to understand what our generation of boomers is heading into. I’ve been on the front lines with elder care for seven years now. But this trip turns out to not be a story about elder care and its challenges, but about the love and surprises that can come through the crumbling of life’s predictabilities.
Learning More About Sunrise
To understand the specialness of this trip, one needs to appreciate a little context. Six months ago we moved Mom into a “Reminiscence” wing at Sunrise for people with Alzheimer’s and dementia. The name of both this wing and Sunrise itself are examples of how much we as a culture have lost our appetite for telling the truth. Sunrise should be called Sunset, but that would never sell. In Reminiscence there are 20 people who can eat on their own but that is about it. They’ve all lost the ability to string together communications and actions in any kind of predictable way, and hence the ability to transact any kind of business. Most can’t reminisce about anything. In addition Sunrise is a corporation, tied to quarterly earnings, and keeps the staff too lean to provide the proper care, so no one is taking any time to dig for any reminiscences if there were any. The building looks beautiful, a showcase for people who want to believe their parents are being taken care of, but the day-to-day support is marginal, especially for these people at the end of their capabilities.
We’ve dealt with this by providing our own staff. Ille and Anna are two Fijian women John found who have come into our lives by the grace of the almighty, I do believe. They are Christian—one is a lay minister— and they truly understand providing loving care. They not only take care of Mom 24/7, but also are providing an extra pair of hands in the Rem area, I heard from John. The combined situation is costing $15,000 a month and cannot continue.
Dinner and A Concert
I arrived at 5:00 after 2.5 hours on the road coming over from San Francisco. The traffic to the valley was horrible, and getting worse as more and more people move up into the foothills and spread out into the farmlands. There may be a housing slump right now, but the sea of immigrants to America and refugees from the expensive urban areas on the coast will not abate. All I have to do is think about Tokyo and Beijing to appreciate what is possible in the future.
Mom was sitting in her wheel chair at a table with another woman, Edwina, a 98-year-old woman who clear headed but fairly deaf. She was a rancher most of her life up in Sutter County. Ille was there as well with an empty chair for me that Ille had scheduled.
Everyone eats together at about five tables in a great room, half of which is for dining and table stuff, and the other includes sofas aimed at a big television. Rooms ring this central area, allowing a few staff to keep an eye on the residents. Dinner had already begun. As I came in the eyes of those who are still able to see well and notice things turned and followed me. Not a lot of outside people come here. When they do, it’s an event. Nobody was talking or making noise, just eating. I would guess most of the folks were in their late 80s or 90s.
As I sat down Mom turned toward me and gave a beautiful, twinky smile. She looked in the pink of health! Her long life of clean living (no smoking, drinking, or eating disorders) has left her healthy except for her dementia. That has left her imbalanced so she can’t walk alone, retaining fluids because she can’t exercise, and fused up in her neck vertebrate so she can’t really turn her head. But inside this rigidity are a strong heart and clear organs, and many parts of the Mother I know and love. Discovering what is going and what is still there is the adventure of a visit like this.
“Hello John,” she beamed. (John comes and sees here very noon hour during the week).
“I’m David,” I laughed.
“Oh!” she laughed.
“Where’s Ann?” she asked.
“That’s John’s wife,” I said.
“Are you married?” she said.
“Yes, to Susan” I replied.
“Oh yes, Susan!”
It’s pretty amazing that Mom would forget Susan. From 2001 to 2005 we had been in almost daily contact with Dorothy and her then living husband David Dumas, as they began to lose functioning and eventually had to move from their lovely house in Sausalito to Bridgepoint, an assisted living place near us in San Francisco. Susan was Mom’s “best friend.” It was Susan who introduced her to David 26 years ago. He had been a tenor in the San Francisco Bach Choir in which Susan and I sang. Moving them, with all the many, many discussions, arrangements, house dealings, contracting, and then finally the move itself left us burnt out but feeling good. We felt very close and the world of aging was beginning to open to us.
David had initially asked me to begin looking for alternatives when my Mom began losing the ability to cook dinner on time and remember things related to medicines. She’d been his caretaker ever since he fell and broke his neck and began to fail due to emphysema, but he was clear headed and could see the confusion and knew that he needed dependable care. We tried having a live-in helper and she turned out to be more high maintenance than they were, getting in fights with David and stuffing her room downstairs with things from flea markets until you couldn’t walk through it. We’d have dinners at their house and talk about all these things, their intentions for their house, insurances, losing their drivers licenses, whether or not there was life after death. But Mom insisted she wasn’t losing her memory. She compensated by keeping lists, and using her intuition. She seemed to have a sixth sense about potential problems. In the end Susan, David’s two sons, and we brothers had to decide. David and Dorothy had to move for both their sakes.
They seemed to like Bridgepoint. We had gone to great lengths to have their new living room and bedroom feel very similar to those favorite rooms in their old house. The day we moved them Susan came over at 9:00 am to take them over to our house for tea and talk while my brothers and I replicated their living quarters within a six-hour period. They walked in at 4:30 pm to rooms completely set up with everything in place – all the familiar paintings, lazy boys, beds, dressers, and clothes on the rack. This day itself was one to remember, as much for the coming together of my brothers and their family as for Mom and David.
All went well until David got pneumonia. He spent five days in the hospital, and was unable to walk or feed himself when he was finally released. He’d been the strong one before that, able to walk to dinner and steer the two of them through the hoops at Bridgepoint.
“Every day in the hospital is five days of rehab,” the nurses told us afterwards. Bridgepoint, the assisted living place, would not accept David back, for they were not geared for that level of care. They were an independent living and assisted living place, not a nursing care or dementia facility. (We’ve discovered that in the ecosystem of elder care there are an increase number of sub-varieties of care facilities. They all have rules. You have to do the navigating).
So we moved David to a nursing home nearby. We were convinced David was not going to make it. He seemed to have lost his will to live. Mom stayed at Bridgepoint. We brought her over to him every day during that period, and they would sit holding hands and she would tell him how much she loved him. Something got him going again. We suspected if was Mom.
After a lot of inquiry we discovered that if hospice would accept David, then he could move back into Bridgepoint, but not in the same room as Dorothy, because she was unable to walk steadily and couldn’t help him at all. So this alternative would require 24-hour care for David, plus the day care for Mom, and two rooms. Our costs were $26,000 a month! David’s insurance would only pay for a month of nursing home care. Mom’s respite care insurance only had months to go. The good news was that hospice workers and his personal assistant were doting on David, giving him massages and baths and helping feed him, and he started getting stronger and healthier. But the setup wasn’t sustainable, and Susan and I were spending all our free time managing this situation. We were burning out psychologically.
Moving to Sacramento
John, my brother, and his wife Ann are both very experienced body workers, doing reflexology and massage with a robust practice in Sacramento. They believed that if we found a less expensive care facility in Sacramento, with a dementia care capability, they could help Mom regain her mobility with bodywork and we could reduce the costs, and have an alternative if she and David got worse. So we moved David and Dorothy to Sacramento. They weren’t happy about this, especially David, so we had a real experience of being children who now were the parents. It’s a reversal no school or reading can prepare you for. It took us into the core of what we believed about responsibility, love, trust, and institutional relationships. Through it all Susan was Dorothy’s pal, helping with shopping, clothes, running interference with the medical system, and orienting the new caregiver’s John found.
We were quite excited about Sunrise at first. We finally got some relief in the relentless number of things we were managing that had nothing to do with being with Mom and David. Our costs were now down to $15,000 a month. (We were very thankful that David had become an accountant following his career as a Lieutenant Commander in the British Navy, and was a very successful investor in his later years). His oldest son Patrick, a New York financial professional my age, became trustee of the several trusts David established. But after every visit we’d plunge into big, uncomfortable talks about how long we could sustain these costs, and, from a longer view, what we and our generation are heading into ourselves.
David died peacefully in April of 2005. Ille and Anna made a Fijian memorial altar in his room. We had a beautiful memorial with David and his sons. Mom thought he was still alive for a long time, taking the “elevator” to visit him on the upper floors. Ille and Anna’s consistent presence was an anchor for her.
But Mom’s dementia progressed. John found Mom’s vertebrates were fused and massage was not helping. Her sense of balance was gone. But her concerns about moving down to what she had earlier called the “loony bin” disappeared. She really didn’t understand too much any more.
The curious thing is, her common sense and humor and social intelligence seem intact, in spite of the scrambling of her memory, and I began to see that she was navigating with another sense that was deeper than thinking in the conventional way. Opening to more intuitive ways of knowing has been of great interest to me, and now I was experiencing having to rely on them with her.
Fly Me to the Moon
At dinner we spent about an hour chatting away. Mom is the only one in the place talking, and she says pretty much anything that is on her mind. She’s always been social and was a wonderful minister’s wife when she was married to Dad. She will chat up anyone, even now, and with her sense of propriety gone, her conversation is like a balloon shooting around the room after one lets go holding the neck.
“Where’s Susan?” she said.
“In Portland, seeing Reid.” I replied.
“Who is Reid?” she asked again.
“He’s Phillip’s new son.” I said again.
“Who is Phillip?” she asked again.
“He’s our son.” I said again.
“How many children do you have?”
“We have four,” I said.
“You DO?” she said, raising her eyebrows in amazement.
“You took all my brains,” she said (for the umpteenth time).
Then she announced loudly to Edwina, “This is my oldest son. He’s a smart one.”
Dorothy’s long-term memory flicks in and out with patchy accuracy. In context she can remember some things now, but can’t access them at will. No short-term memory is working. Every ten minutes it’s Groundhog Day, starting all over again.
I used to be really upset by this, but the years working with her and David in close quarters opened up my compassion— the channel of feeling and love. That’s the one that still works. I look at Mom and she looks and me and the love flows. I don’t mind being her memory now. I don’t mind retelling the stories over and over. She laughs and loves them anew each time. I wonder if this is what “enlightenment is,” being totally in the present moment. Beginner’s mind for real. I’m surprised at how fun it can be when I yield and drop my expectations.
Mom has a reputation for going straight at people. One helper has long, gel coated hair, a nose ring, and a flouncy, sassy attitude. “Hey rascal,” she says to Mom. Mom sasses back. “If you come over here I’ll get some scissors and cut your hair!” Mom says. She doesn’t let anyone off.
One of the people helping this particular evening was a short, stern looking woman with very short hair. She barked out requests and orders—no wasted words. As she passed by Mom would say, in a loud voice “she’s tough.” Then she would turn to me, give a power sign with her arm, and say, “I’m tough,” and laugh. “I could spank YOU,” she said. Several people were watching her like they watch TV, with uninterpretable stares. As my own sense of social propriety sputtered and winced, I remembered that her mother was Clara Ida Miller Egly, a Pennsylvania Dutch woman who never complimented and considered criticism a love tap.
After dessert the “tough” woman came by to get our plates. I looked her in the face and said, “Can I make a request?” I could see her stiffen. “Yes.” She said, waiting. “Can I play the piano?” I asked. A look of amazement passed over her. She broke in to a big smile. “Of course, that would be great.” She said. So old toughy has a soft side too. I suspected.
I went over and sat down to play. A woman named Margaret pulled up beside. I put Mom beside me in her wheel chair. I began with a soft “America Suite” taught to be by Doug McKechnie. Then I played the song Susan and I danced to at our wedding 40 years ago, Fly Me to The Moon. I then went through my repertoire or ragtime and jazz, which only goes for about 30 minutes since I don’t practice much. And I pushed out into just making things up. I noticed that everyone was hanging on every note. I turned around, and the entire room was glued on me. I felt like Yani at the Parthenon. My heart skipped a beat. I turned back and played some more. Then as I played the spirit of my youngest brother Gordon, poured through.
Gordon, Mom’s fourth son, was the “accident” in our family, at least that was the story Mom would tell everyone upon introduction. He was the only one with red hair. He was born with bad valves in the veins in his leg that eventually led to painful rounds of phlebitis and infection, debilitation, drinking, loss of his job, and a downward spiral that ended up in his taking his own life at the age of 48. But he was a gifted piano player, artist, and all around “genius” at building and creating anything. He made completely original music all his life. When he died, in the midst of the incredible pain and soul searching that our family went through, I found that his music began to channel through me when I played. It’s my way of communing with him now. I mentioned this to my Mom as I concluded. I did not yet have an inkling of the surprise that awaited me a few hours later.
We went back to Mom’s room and shared pictures of our family on my computer. She wanted to see what Susan looked like. At each one she’d light up with pleasure. “That’s Susan!” I continued to relate the names and the old times, and feeling her love of me, and being grateful for this moment. In spite of all my resistance, this time was turning out to be a blessed one, and my heart was open and full.
Ille came back from an errand she went on around 7:30 and I left to go up to stay with John and Anne at their home in Placerville. I would see Mom again the next day coming back off the hill and going back to Oakland to pick up Susan at the airport.
“I’ll see you again tomorrow!” I said. “Good!” Mom said. “I like it when you visit.” My heart melted a bit.
Waking Up to Deep Memory
I got to John’s about an hour later. His son Logan came over to see Uncle David before he went back to college near Seattle. We sat and talked about Mom and all kinds of things for about three hours.
In that time John reminded me that this very day was the anniversary of Gordon’s passing 10 years earlier. I could feel the Goosebumps rising. So that is why I came over! So that is why I was playing the piano. Some part of me knew, and was called.
How could I forget that, I thought, running through my memories of the afternoon and being Mom’s memory? Yet here I was, not remembering something this big—but yet not forgetting either, for part of my psyche knew that being with Mom, and being with John and Ann on this day was what I most wanted to do.
I think that is the channel my Mom is on now. It feels like the big channel, the one produced by Great Spirit and all it’s manifestations. It emerges in the very face of the unpredictable and the uncertain. It is the gift that comes when the rest of life begins falling apart.