Lefty Parent » dementia

The Last of Jane Roberts

Cooper Zale — Wed, 13 May 2009 22:37:10 +0000

Jane Roberts' college graduation picture

After years of dementia, with barely anything left of who she was except a glint in her eyes of recognition when she saw me, and the ability to somehow still swing a tennis racket, my mom ended this incarnation, to relief and sadness on my part. Reflecting on the entirety of her 83 years of life, particularly the first half of it, I am struck by how she managed to use her imagination to make up for a lack of resources and “be effective” challenging conventional wisdom, including aspects of the liberal progressivism of the university town where she spent the best years of her adulthood.

My partner Sally and I were in a hotel in Denver where Sally was attending a conference and I was just enjoying a long weekend away from Los Angeles. I was woken up by a call after midnight from the emergency room at Presbyterian Memorial Hospital in Van Nuys. The nurse on the phone said that my mom had been admitted, in a coma, after collapsing at her assisted-living residence, and that the doctor needed instructions on whether to try and take the measures to keep her alive.

Just five days earlier, I had done my usual Sunday routine with my mom. The folks at her assisted-living place would drop her off for the Sunday service at our UU congregation, and then I would sit in the service with her, usually with one hand around her shoulder and the other holding hers. After the service I would pick up a hamburger, fries and a coke for her and take her to Balboa Park where I would help her eat her food while we watched people play tennis or baseball, and watch the little kids run around. After she finished her lunch, I would give her the tennis racket I had brought and would bounce balls in front of her. Even at a point where she could not remember her name or mine, she could still swat a tennis ball bounced in front of her. Then when we were done, she would always say what seemed like the only word remaining in her depleted vocabulary, “Thank you”.

Returning now to that late night call from the hospital, momentarily stunned by the realization that my mom was finally on death’s door, I told the nurse on the phone to do what they could to keep her alive for now. I called my brother Peter and let him know what had happened and I managed to catch a flight back to Los Angeles the next morning and picked him up later that day after he flew in from his home in Cleveland. She had the breathing tube in her mouth and rasped for breath with eyes closed as we sat with her in the ICU of the hospital, held her hand, told her we were there and that we loved her.

I talked to her personal doctor (who had been the one that had originally diagnosed the dementia and been her internist all these years) and he said that if she came out of the coma she was likely to have additional brain damage on top of her now extreme dementia. My brother agreed that it was clearly time to let her go, and we instructed the hospital staff to remove the breathing tube and the intravenous fluids. Sally, Peter and I spent her last full day at her side, squeezing her hand, kissing her forehead, telling her it was okay to go, sitting quietly and sending her our energy and thoughts.

In the evening we went home to return in the morning, but before we left the house the hospital called to tell us she had died. When we got to the hospital they had moved her to a regular room. My brother and I went in and pulled back the sheet from her head. I was a bit scared, because I had never been so intimate with a dead body before. Her face was round and shiny and she looked relaxed. I kissed her cold forehead and told her once more that I loved her, and like I said to my dad the last time I saw him alive, that I would “always hold her in my heart”. In the 22 years since my dad died, I had found no better words to say goodbye to someone I dearly loved.

We had exhausted her modest savings helping paying for assisted living during the last six months of her life. The rest of those expenses were paid by mom’s sister (my aunt Pat). My mom had wanted to be buried beside her mom and dad in her hometown of Binghamton New York, in the Calvary Cemetery on the hill overlooking the Susquehanna River. To facilitate getting her remains there, we had her body cremated and shipped her ashes to the funeral home in Binghamton.

I led an informal service for my mom at the funeral home, with my brother and I, our families, her siblings and their families and a handful of old friends (who lived in or near Binghamton) in attendance. We sat in a circle around the urn with her ashes. I spoke and gave everyone else a chance to. In honor of my mom’s outside-the-box approach to life and sense of humor, I had us all sing two of her favorite Frank Sinatra songs as our “hymns”. First “New York, New York” and then at the end, “I did it My Way”. I can’t imagine she didn’t get a kick out of that!

We transported my mom’s urn to the cemetery on a blustery September day with light rain on and off. It was actually my mom’s nephew (her brother John’s youngest son), who worked as a gravedigger for the cemetery, that dug the hole next to her dad’s grave and placed the urn in it. We all took turns throwing a red rose in with the urn before he filled in the dirt.

Back in Los Angeles, we did a second service for my mom in the sanctuary of our UU congregation, with Sally’s family in attendance as well. Again I led it, and again had everyone singing those Sinatra songs my mom loved.

I had a headstone made for my mom with her college graduation picture etched in the stone along with, “Jane Roberts 1923-2006” and then, “Inspired Tennis Player, Artist, Feminist and Mother”, with the thought that any of my mom’s future descendents who read it might be intrigued to find out more about this person and those things called out. I am yet to get back to Binghamton to see the headstone in the ground next to her dad and mom’s.

Looking back, it is my opinion that my mom was always at her best when she was unconventional, using her wits and imagination (to paraphrase Sinatra) to “do it her way”. She taught herself how to play and became an amateur champion tennis player, without ever having a tennis lesson or a coach.

She left her parents home as a young adult, unmarried and not even engaged, to travel halfway across the country at the suggestion of a young sports writer (years later her husband and my dad) who had a scheme to get her into the University of Michigan. They were not even a couple at the time, and my mom found her own places to live in Ann Arbor for several years until she graduated from U of M with her degree in sociology and they decided to get married. Reading my dad’s diary of those years, after his death, I noted that there were several other women in his life during those years before marrying my mom, so she was definitely charting her own course.

Later as a parent, she eschewed the rewards and punishments of conventional parenting practice and adopted the mantra that “kids will tell you what they need”. Based on that assessment, she gave her sons lots of love, wonderful toys – wooden trains, Tinker Toys, Lincoln logs, plastic figures and dinosaurs, and various other accessories to facilitate our love of imagination play, plus venues to play in, including a full basement and the park next door.

Living on my dad’s modest college professor salary, she would buy old tables, chairs and other pieces of furniture from garage sales for a few bucks, strip, sand and beautifully refinish them (usually with linseed oil) so our small house had proper furniture. The walls surrounding that furniture were hung with the abstract paintings she painted.

Years later in 1970, divorced with two kids and lacking the money to travel abroad in the conventional way, she researched and worked out a deal to trade houses and cars with a young couple in Oxford England for the summer and found cheap charter flights to get her, my brother and me there and back, with the lower cost of living in England (at the time) paying for the plane tickets.

During that same time period, she was one of the few women in the mostly male world of local politics as a Democratic Party precinct chair and successful campaign manager for local male candidates for city council and mayor. Switching her focus to the women’s movement, she became a feminist activist and the membership chair for the local chapter of the National Organization for Women, but not afraid to recruit men as well as members for the group. Her greatest triumph as a feminist was as one of three women who coordinated a hugely successful local festival to celebrate the International Year of the Women in 1975.

With my brother and I leaving the nest, and lacking that mythical “man in my life” that she lacked, it seems she could no longer pull rabbits out of her hat and settled (in my opinion) for remarrying my dad, moving to the suburbs of Dayton Ohio to live with him, and lead a more conventional life as a wife and real-estate salesperson. After my dad’s death in 1984, she moved to the little New Hampshire summer resort town of Wolfeboro where she continued for 15 years to be (by all accounts that I am aware of) a colorful character in the stodgy little Yankee town on Lake Winnipesaukee, before leaving that place in 1999 to live her last chapter (dementia and all) with us in Los Angeles.

Thus the briefest sketch of the life of a person, who among other things taught me the importance of “being effective” and gave me the courage, after some succumbing to conventional wisdom for a while when faced with issues around school with my own kids, to let them “tell you what they need”.

My Mom’s Last Good Fight

Cooper Zale — Tue, 12 May 2009 13:54:41 +0000

Jane Roberts around 1999

My mom had always been an activist and forever relished a “good fight” for the things she believed in, but found herself, at age 76 after moving out to Los Angeles to live with us, diagnosed with dementia and a final seven-year struggle with the gradual loss of memories and the general unraveling of her once great mind. My mom was a fighter to the end, but with the continuing loss of her faculties, that fight got more and more quixotic and convoluted, and difficult for those of us around her. For me experiencing this with her, every day I grieved the loss of one more piece of the bigger-than-life person she had been.

As I indicated in another vignette (The “D” Word), a few years after my dad’s death in 1984, my mom was diagnosed with an atrial fibrillation that was causing her heart to not pump blood properly. For years it was treatable, but finally not, and the oxygen flow to her brain became permanently compromised, leading to the dementia. To my mom and the intellectual powerhouse she had once been, her diagnosis carried with it such profound fear that she could only deal with it by denial. When I tried to discuss the issue further on the way home from the doctor’s, my mom glared at me and told me candidly that she could not deal with the thought of “losing her mind” and so she did not want to talk about it again.

As I said my mom was a fighter, and her refusal to talk about her dementia was only the beginning of her dogged campaign to recover her mind. I agreed to mostly honor that prohibition, except when she would occasionally look at me with a pained face and pointedly ask, “What is wrong with me, Coop?” I would say something like, “You are wrestling with dementia, mom. It is getting hard for you to remember things.” She would think about that a moment and become more quiet and say something to the affect of, “I don’t want to talk about it anymore, and I don’t want you to talk about it either!”

So life went on. We introduced my mom to the large contingent of people her age in our otherwise small Unitarian-Universalist congregation. They graciously accepted her into their circles, interacting with her at the Sunday services and inviting her over for various lunches and coffees. I was initially hoping my gregarious mother would take advantage and develop a circle of friends in her new world. But instead of following up on the offers of connection, she holed up in her little guesthouse and hyper-focused on rearranging her furniture and making everything perfect, saying she had to get the place “in shape” before she could invite new friends over. I accepted this as part of her fight with the dementia and the need with her diminished capacity to acclimate to a very different world than she had left http://www.leftyparent.com/blog/2009/05/13/the-last-of-jane-roberts/in her little one-main-drag New Hampshire town. In the way too big city she was now a resident of, she had to build her safe little nest to inhabit.

This really hit home to me when I realized that she was writing all the important information about names, addresses and phone numbers of friends, plus notices and news clippings she had kept from key moments in her life, and taping them up to the walls of her bedroom. Letters from good friends, clippings of theater performances my brother or I had done in our youth, letters to the editor she had written in support of the ERA or women’s reproductive rights adorned her wall. When she woke up in her bedroom each morning, the walls would remind her of who she was.

Her ability to make new friends was severely compromised by her growing short-term memory loss and her inability to remember the names of the people she met. Each Sunday at church she would joyfully greet the people she had met in previous weeks as if she was meeting them for the first time. She was charming enough and her peers in the congregation caring enough that they put up with this and developed relationships with her as best they could. Sally’s folks and their extended family also lovingly took my mom into their circle and accepted her diminished capacity.

It still pained me that all these people did not know her in her prime, as a powerful bigger-than-life personality, but only as a sort of “Mr. Magoo” type character. I would find myself repeatedly recounting to friends and family, when in conversation with me and my mom, of her accomplishments in the women’s movement, the fight against the war in Viet Nam, and her work in Democratic Party politics.

Things became more difficult when, after a train journey to New York accompanied by her sixteen-year-old grandson Eric, she got it into her head that the problems she was having were because she had moved to Los Angeles. She had not had these problems before the move, the solution to recovering her mind was returning east. She also decided that she wanted to live again in the house in her hometown of Binghamton New York and refused to accept the fact that her brother had had to sell it twenty years earlier when their father had had a stroke and needed to live in a nursing home. So my mom began a multi-year campaign that she doggedly stuck to trying to convince me or one of her grandkids to get in her Volvo with her and drive her “back east” to recover what she had lost.

I had the same frustrating discussion about this over and over with her since she never remembered the result of the previous one. But my heart was captured by her laser-like focus on the one path she perceived to wellness, and eventually, I felt compelled to honor her quixotic quest and to at least explore the possibility of her moving “back east”. My brother and I discussed it, and quickly ruled out her returning to Wolfeboro, since her sister (my aunt) and brother-in-law (my uncle) had now moved away and there was no other family in that town to look after her. The only possibility was Binghamton New York, where she had lived as a teenager and her parents had continued to live until their deaths, and her brother continued to live.

So my brother and I accompanied her on a trip to Binghamton, to see if she connected to her old hometown, to see if there was an assisted living facility that might work for her there, and to see if her brother (my uncle, two years younger than my mom) was in any condition himself to keep an eye on her. But though the assisted living facilities we looked at seemed pretty good, it was quickly clear that the cost would be great and it was not going to work without having either my brother or I in the same town as her no matter how good the facility. We stayed at her brother’s house and soon realized that he was suffering from the beginnings of dementia as well.

My mom did recognize her old neighborhood when we all ventured there, but unfortunately fixated on returning to her parent’s old house, which had been sold many years earlier. In her diminished mental state, she refused to accept this fact, and thought it was her brother who was preventing her from living in their old house, and until nearly the end of her life demanded to all who would listen that she be allowed to go back there and live, a place where she would be well again and return to the memories of her youth (the only memories she still had at this point). But in the real world it was not to be.

With the scenario of the continuing deterioration of her mind painted out to me (but no longer to her) by her doctor, and her impossible continuing quest to recover it, I had to come to grips with the journey I ahead of me I was fated to accompany her on. It struck me one day, as tears filled my eyes listening to the song “Changes” by folk singer Phil Ochs, that every day I was saying goodbye to one more piece of my mom and grieving its loss. And at some point, before death (hopefully mercifully) ended her “run” in this incarnation completely, I might lose every last piece of her except for her recognizable face.

But I was committed to this last journey with her, remembering how my brother Peter had made a journey nearly two decades earlier with my dad when he had pancreatic cancer (see “Saying Goodbye to Dad”). It was my turn to honor the parents who had given me so much, who bravely ignored the conventional wisdom of the culture to raise me as they intuitively knew they should.

(See the last installment)

The “D” Word

Cooper Zale — Mon, 11 May 2009 23:13:48 +0000

Jane Roberts around 1999

In 1999, recently arrived in Los Angeles from her little town of Wolfeboro New Hampshire, my mom was diagnosed during the first visit with her new doctor with dementia. Where a diagnosis of cancer used to be feared by many as an automatic death sentence, today many people, including my partner Sally are “cancer survivors”. But today for many, the most fearful diagnosis is one of “Alzheimer’s” or “dementia”. To date I have not encountered anyone introducing themselves as an “Alzheimer’s” or “dementia survivor”. How can a person (or their loved ones) come to grips with “losing their mind”? What is more precious and irreplaceable to us than our memories and our personality?

A few years after my dad’s death in 1984, my mom was diagnosed with an atrial fibrillation, which was causing her heart to not pump blood properly. What had provoked this condition was never confirmed, but her doctor suspected that it had been some sort of virus that had attacked and damaged the muscles of, and maybe physically reflecting perhaps the metaphoric “breaking” of, her heart, after a lifetime struggle with self esteem, lacking the love of her own mother, and never finding the kind of loving relationship with a man that she continued to long for.

My mom had led a life of good health but also continued to have a general ignorance about issues of body and health, and was very uncomfortable about visiting doctors and spending time in hospitals. It was a blessing (to the extent that information about issues with ones health is truly helpful and not doubly debilitating) that when she moved to the little town of Wolfeboro New Hampshire, after my dad’s death, that she found a female physician who she really connected with on a personal level, and who diagnosed her heart ailment.

At first, my mom’s doctor and the local community hospital’s heart specialist were successful correcting the condition with drugs, and my mom could go for months at a time before the condition would reassert itself and require additional treatment. After several years of this, the drugs became ineffective and she was sent to the medical center at Dartmouth University for electric shock treatments to convert her heart back to a healthy rhythm. At first successful, eventually these treatments became ineffective as well and there was nothing else in her doctors’ toolkit to cure her weakened heart.

I was not medically sophisticated enough to understand the impact this could have on the blood flow to my mom’s brain. If her doctor had shared this possibility with her, I don’t think my mom would have been willing to acknowledge or accept it herself, let alone share it with me.

My entire life my mom had never been satisfied with her circumstances, and always longed for something better than her current lot. Maybe that was her motivation, or maybe she sensed at some level what was coming, when she began suggesting on the phone to Sally and I that after fifteen years in her little summer resort town of Wolfeboro that maybe she should move. She suggested that if we were willing to sell our current small house and buy a new one with a pool and a guesthouse, she would move out and live with us in Los Angeles and pay “rent” to help us pay the bigger mortgage.

If it had been a “bluff” to blow off steam, as the new focal point for her seeming perpetual dissatisfaction with her life, Sally and I called that bluff. We found and bought a bigger house with a cute little guesthouse and a big pool suitable for swimming laps (which my mom did for exercise in the summer). When I shared the news with her on the phone she was excited and said that she would start the preparations to move.

Even though she was a right-brained artistic type, my mom had always been very capable at logistical projects, making her lists of tasks and not shy to reach out to the people she needed to make whatever project happen and think outside the box to overcome problems encountered along the way. Her sister Pat was willing to pay to hire a top-notch moving company that would handle everything, including shipping my mom’s beloved 1986 Volvo sedan. But from the beginning of this project, she struggled uncharacteristically with every step, and the move date kept getting pushed back. Finally her nephew Mark (Pat’s son and my cousin) and his partner Gina volunteered to help, and the two of them in the course of a couple weeks managed to organize and pack all the boxes and otherwise prepare my mom for the movers.

Having overcome her fear of flying just a few years earlier, my mom flew out to Los Angeles by herself. I can still remember the big grin on her round face when we met her at the gate. She seemed a bit more overwhelmed and compliant than I would have expected, but then she was older now and it was a huge change coming from her quaint little Yankee town to one of the biggest most diverse cities in the world. A week later the big truck came with her furniture, boxes and her Volvo sedan and she supervised the movers arranging the furniture in her new guesthouse, and launched into the process of unpacking all those boxes and arranging her stuff, which felt more true to her form.

We had hoped she would maintain her independence by being able to drive herself around to attend classes, join groups and visit new friends, things she things she talked about doing routinely back in Wolfeboro. But from her first day in Los Angeles she was intimidated by the size and complexity of the streets and the amount and speed of the traffic. As cars sped by our car with her as a passenger, she would curse the driver and express her anger that there were no police anywhere to pull them over and write them a ticket.

Though she let me, and later her grandkids, drive her Volvo, she never once was willing to get behind the wheel herself. I was concerned with this situation, and hoped I could eventually ease her into driving, which seemed critical to giving her the opportunity to build her own independent life in her new city. I drew her maps of the streets in our neighborhood indicating the local grocery store, drug store, gas stations, etc. She continued to curse the traffic, the dearth of police cars, and refused to drive. Little did I know initially that this would turn out to be a blessing of sorts.

After a month or so from her arrival, we were fortunate to hook her up with a relatively young male doctor with the gregarious personality to make an immediate connection with her. It was at the end of her very first office visit that he let both her and I know that based on her heart issues and his examination, that in his opinion she had the beginning signs of vascular dementia. To my mom and the intellectual powerhouse she had once been, her diagnosis carried with it such profound fear that she could only deal with it by denial. When I tried to discuss the issue further on the way home from the doctor’s, my mom glared at me and told me candidly that she could not deal with the thought of “losing her mind” and so she did not want to talk about it again.

I don’t think Sally and I fully comprehended at this point what was ahead of us, hosting my mom afflicted with that dreaded “D” word for the last chapter of her life. But we realized that ironically, just as our kids were becoming more independent and needing less of our attention and care, my mom would more and more require us to be caregivers again, including eventually dealing with baths and bodily functions, and other such tasks we thought were behind us. It seemed best to not think too far ahead about what was in store, and instead take things one day at a time. Based on increasing stories in the media and anecdotes from family and friends, we also knew we were not alone in having to face this sort of a challenge.

I knew that maintaining a good relationship with my mom had been at times challenging for my partner Sally in the past. My mom, though always a caring person, could be opinionated and overly dramatic about her passions and concerns, maybe not too far from Bea Arthur’s iconic “Maude” character from that 1970s TV comedy of the same name. Now with the dementia thrown in, possibly exacerbating these traits and limiting my mom’s sensitivity to others, I contemplated some initial concerns that she could cause issues between Sally and me. Certainly Sally had not explicitly signed up for intimately caring for my mom when we agreed to marry.

I vowed to myself that if it ever managed to come down to (though hopefully not) the interest of my relationship with Sally versus the relationship with my mom, my relationship with my spouse would take precedence. It has always been important for me to establish those kinds of principles in my own mind to help me make decisions when things get complicated or quick action is required. It then allows me to relax and better live in the moment and not sweat the “what ifs”.

I must say that I shared my concerns with Sally, if maybe indirectly, and was quickly assuaged not to worry. I was reminded again that she and I were partners to the core, extending even beyond this life if you believe in such things. That felt right to me, since in Golden Rule terms, I would certainly do the same if the shoe were on the other foot and it was her mom or dad that needed our loving care.

(See the next installment)