It is day 1 (in Australia) of World Alzheimer’s Month, which many of us prefer to call Dementia Awareness Month #DAM2020 to help prevent people with a dementia other than Alzheimer’s Disease (AD) feel excluded by the campaign. It’s been a long haul emotionally and physically lately, with many personal stresses, and a recent major IT issue with DAI, taking up too much time and energy.
But, here we are, it is September again! I will do my best to post blogs more regularly here this month, and it is more than timely to be focusing once again on the need to #BanBPSD.
I’ve been in contact with a Susan Troyer again this year, and I am thrilled to report I was recently added to her website A Beautiful Voice, on the Dementia Influencers page. More on that in another blog!
Susan’s deeply personal story about her mother has led us to discuss sharing her mothers experience of being in residential care, and I am honoured to kick off #DAM2020 with it. It is a sobering read, and highlights yet again why we must do all better.
Submitted by: Susan Troyer, Friday August 28, 2020
Our 5-Star Nursing Home Experience
“If the virus is dangerous and often deadly, so too is isolation for people living with dementia… It can be fatal… People living and dying with dementia – at home or in hospital or a care home – are among the most vulnerable in society, and they are also the easiest to ignore and forget. Let’s not.” – Nicci Gerrard, TheGuardian.com, May 2020
For a decade, I did not think I could ever tell this very personal story. In dialogue with Kate in recent weeks, I became somewhat “equivocal” … But now – following the 10-year anniversary of Mother’s admission to a nursing home, I believe that to not tell it is to allow the status quo to prevail. This is at a time when COVID-19 presents the potential for creating needed change. Thus, some excerpts from our experience follow.
A Beautiful Voice is a site launched in January 2020. It is my mother’s voice. She was 80 at the time of her Alzheimer’s diagnosis and lived to be 94.
With the help of daytime care partners, I was able to be with her and my father, subsequently diagnosed with vascular dementia. As three very independent-minded adults in our intergenerational household, we got along well in what we lovingly referred to from the second day as “the ranch.” It was located on property adjacent to the large farm managed by my parents for three decades – and where I grew up.
In this setting, I was able to continue a physician consulting business, while also being in the academic world as a PhD student. Caregivers provided relief 4-8 hours on most weekdays, during which time, I was available to assist – and to fill in when needed. Otherwise, I was present on the front-lines around the clock – including weekends and holidays.
I feel intimately acquainted with Kate’s work on”confinement of the person living with dementia.” I am still reliving our experience which took place one decade ago – July 2010.
By this time, the admission was intended to be long-term.
On the 10th anniversary of Mother’s admission to the nursing home, my memories of daily visits are not only vivid, but also based upon entries to our Memory Journals.
From the beginning, I had committed to being with Mother and Dad “so long as we could all manage together.” We had done remarkably well.
Her admission now would be due to a combination of events, but mainly this. I knew I would not be able to find 24/7 respite during the healing process of my shoulder injury acquired from lifting.
From the very early years, it was apparent that the nursing home was my only “Plan B.” I had now met the brick wall. I knew I had no other options, and I finally relented.
Events and observations – as recorded in Memory Journals
- On Day #1, Mother “performed” for a physical therapist by doing a run-walk up and down the long hallway – as if in a competition. It was a demonstration to him of her independence, physical prowess – and, I believe, her way of telling us – she didn’t belong here. A college athlete, she was still able to get around quite easily on her own, although that was changing. We did have a wheelchair for needed moments.
- By Day #2, she was being “efficiently” moved around the room in a wheelchair. On two occasions when I happened to be present, she was lifted by a male CNA on each side of her – so that her feet were not touching the floor, but her legs were moving as though riding a bicycle as the CNA’s moved her to the dining table or across the room. It was “efficient” – but showed lack of respect for her dignity, I thought.
- But back to Day #1… Only 40 minutes after I left her following her admission to another more private unit, she was placed in this large community room with perhaps 35 people living with dementia – no one as “advanced” as Mother’s condition. The room had a fish-bowl effect, where anyone could stand outside the unit looking in through large windows at the residents. She did not “fit” in the first unit because she was still so active. As a result, I believe the consensus regarding her plan of care was to have no plan of care for her other than to provide surveillance for her “safety and security.” In her advanced stage, she was left on her own in this busy, bustling, and noisy unit. So, arrangements changed quickly and were not what we had thought they would be. The voice message from the social worker registered 40 minutes after my departure.
- Within the first week of admission, I was asked to sign a note giving permission to use chemical restraints. I declined – firmly. This is most likely what prompted my feeling that I was now the “outlander.”
- In those first few days of our July admission, I wondered as I entered the room full of elders whether the air conditioning was turned on! Looking around for Mother, I found her wrapped up like an infant in a heavy blanket being used as a restraint.
As a musician, she had still moved her arms to the music in a lovely way – as though directing a choir. But on at least two occasions, I found her quietly bound – unable to move arms and legs – in a blanket far too warm for the room temperature. It felt to me like my punishment for not agreeing to chemical restraints. But in this warm room, this, too, was dangerous, outweighing any benefits related to her “safety and security.” Each time, she had appeared distressed and not speaking, as I unwrapped her.
- Regarding chemical restraints – even after I had been asked to sign a release statement and declined, I am quite certain that she had been drugged on several days prior to an arrival for my mid-day visit.
- Two baths in 11 days. Poorly groomed with dirty hair. Mismatched outfits from a nice wardrobe of light-weight summer coordinates in her closet. Why didn’t slacks and tops ever match? Would that be so hard to do? I was annoyed about such a simple matter. This was in contrast with the male leaders from the community who were groomed and looking quite dapper!
- Lack of handwashing in this huge room… At the time, the community room had one small, very small, sink which was never used by CNA’s – even between “tasks” of serving food and bodily moving people around. Where did they wash their hands? I wondered. It was long before the days when hand sanitizer might be seen on counter tops everywhere.
- On most days when I arrived, Mother would be sitting alone with her head down on a dining table with no apparent plan of care and no meaningful engagement – ever. She appeared to be abandoned.
- Upon my arrival on one occasion, she was chewing – actually tearing with her teeth on one of several Beanie Babies placed in front of her on the table. I had never witnessed such behavior – prior to her admission or upon her release. Never.
- I offered to a unit coordinator that I would leave some of her books, cards, and photos – which I brought for my visits with her. She replied quickly that they had many books and cards. “Maybe we can read excerpts to her.” That never happened.
- When I arrived to feed Mother, to sing at the piano with her, to read with her, and to walk together in the courtyard, I did not feel welcome, in spite of having a good music friend from high school employed in a key position. In addition, two of the facility employees were currently assisting me on a part-time basis in my business. In this small town, I could connect almost every employee with someone I had known in my past. But in this environment, I was dealt a new perspective quite different from the pleasant memories I had retained over the years.
- I had worked many years in administrative positions in Chicago area medical centers before establishing a physician consulting business which interfaced with physicians, hospitals, and universities. Yet, I was tip-toeing around the unit to be with Mother. By showing up and being present, I felt like an intruder. Chatting with a nurse manager, I was gently told: “When you adjust, your mother will be fine.” Was this a suggestion to not show up? To just go away?
It appeared they didn’t like Mother. It was totally remarkable to me. It is true – she did not “fit” in this unit in any way. At the ranch, our care partners had come to know her as “Miss Ethel” and treated her as very special. At the ranch, she was cared for like “queen bee.”
So – had there been a unit management decision that she was beyond being helped? … That she would not benefit from any activities or social interaction? Or what had conspired against her receiving nothing but food, toileting, and two baths in the first 11 days?
Unable to communicate with anyone about her care, it appeared that our experience here would, most likely, culminate in a request for her discharge. It seemed to be only a matter of time, so that I could be certain of not acting with too much haste.
- On Day #14, I entered Mother’s semi-private room, last room at the very end of the hallway, during a “Me Too” moment (before “Me Too” became a movement). Three men were in her room. A male CNA stood on each side of the wheelchair. A maintenance man with his back to the door was bent over her in her wheelchair. I reported these facts which were never refuted at any point. The three did not disagree with what I saw.
The CEO’s incident report which quickly followed, however, included context and stated that, due to “context,” no “inappropriate behavior” had occurred. In the report, I was referred to as “the daughter.”
No apology for the appearance of impropriety followed – from anyone involved in any of the discussions subsequent to the incident! For me, it was a dehumanizing experience.
Interestingly, on the day following the “Me Too Moment,” everyone suddenly knew our names! Concern for us and about us was now like what I had anticipated prior to the admission.
This, however, was not adequate to compensate for what we had both experienced. It was an embarrassment to me to have been in any way involved in what I felt compelled to report. It also felt stigmatizing to quickly be dismissed as “the daughter.”
- On Day #15, I was informed Mother could no longer swallow and had stopped eating. When she stopped eating so suddenly, I was told that this sudden change was not unusual for someone diagnosed with Alzheimer’s.
By this time, the physician had already agreed to the day of discharge and I was making plans to take her back home to spend her final days in a familiar environment. Three CNA’s who lived within one mile – all new to me – had appeared at my door to help via job-share in the off-hours while I mended!
I was able to express my thanks to the nursing home. My friends were still working there – and it was very apparent that everyone worked hard and “efficiently.”
I thought then – and still believe – that the staff was doing the best they knew, but lacked needed education and training in the care of people living with dementia and their families.
Personally, I just wanted to escape – to quickly leave – to take Miss Ethel to her home where she would be cared for in her final days.
Reflecting back: “On routine – every day”
Since I had arrived on routine to be with Mother – around the same time every day – I would never have anticipated that these violations would be so very apparent.
This church-related facility is listed as a “5-Star nursing home,” and “one of the most highly-rated in the region.”
“We know that human beings die because of medically-related issues, but they also die because their spirit is not being nurtured.”
The stigma which prevailed one decade ago was that people living with Alzheimer’s at Mother’s advanced stage would not have awareness about their environment and surroundings.
Has our understanding changed in the last decade? Is there a new level of awareness and understanding today?
Brief excerpts from our Memory Journal, which were entered in the week following discharge, reveal Miss Ethel’s awareness regarding these events.
Day #19 – Day of Discharge: When she was rolled to the front door and saw the RAV, her face lit up and she clapped joyfully! Sitting in the back seat, she hugged Barbara, her dear care partner, all the way home. When she sat down on her cushion at the kitchen table, she said,“This is good.” She immediately fed herself and never stopped eating until her death a year later.
Upon our return to the ranch, a steady rain had begun. It seemed befitting of the moment. Later in the day, we were belting out one of Mother’s favorite numbers at the piano – “Rain Down.” She always loved its slow gospel beat.
Day #2: It is pure joy to have Mother back at the ranch. Upon opening her eyes when she awakened this morning, she looked disoriented, as though not knowing where she was. She quickly clicked into place and started singing to me when I walked in to greet her.
What a morning! It was quite a reunion with two nurses from her hospice team. Along with Barbara and me, we were four people who had been hands-on, who had cared for, and who had been inspired by Miss Ethel! We stood and watched as she ate her breakfast. All of it! Every bite. No one could see the “swallowing problem.”
Day #3: Mother was high-energy again. With another care partner, a second Barbara, we used the new gait belt around her waist and went out into the warm, humid morning air for a walk. Barbara was holding Mother’s belt and I was following along with the wheel chair right behind, in case Mother would get tired, need to sit down to rest, and possibly need some help getting back up the drive. But no! At one point, she was helping to push the wheelchair. Mostly, she clipped along ahead of it… 2 ½ times around the unusually large cul-de-sac, then straight across the diameter, up the drive, and back into the house! I had to move quickly to keep up with her. And it didn’t really seem to tire Mother out that much! The resiliency of body and spirit were remarkable.
Day #4: Continuing to express awareness of her recent transition, Mother smiled upon opening her eyes and said, “Where were you?”
Suz: “I was right here all night.”
Suz: “You were away for awhile, but you have come back home.”
Mother: “It’s so good,” she said passionately, closing her eyes and pulling the sheet around her neck.
Day #5: Mother awakened happy and grateful, which is how she had always awakened at the ranch. Just so lovely.
Day #6: We have had some amazing conversations upon awakening this week, and it continued this morning. Laughing, I said to Mother: “I’m the minority of one who thinks you should be at home in this house.” Mother responded quickly, “I’m with you.”
Day #7: Hands-on care partners are still rejoicing over Mother’s return. Not an overstatement! It was a period for rejoicing!
Are we ready to walk a mile in “her” shoes?
COVID and dementia both teach an important truth: It is time to stop simplistically rushing to return to our “perfect normal” again – without doing the work of being “more perfect” for everyone.
Gerrard, Nicci. (2020, May 10) How did we end up turning our care homes into jails of enforced loneliness? TheGuardian.com. Retrieved August 28, 2020 from https://www.theguardian.com/commentisfree/2020/may/10/how-did-we-end-up-turning-our-care-homes-into-jails-of-enforced-loneliness
Submitted by: Susan Troyer, August 2020