A few weeks ago, I sat riveted to a film about Alzheimer’s disease, caregivers, patients, and the human and financial cost of it all. Even though it was a Saturday evening and I had plans to go out, I could not move from my seat as the documentary film “Every Minute Counts” shared the stories of patients, families and the fate of elders with Alzheimer’s. I have something in common with the people in the film, as for nearly a decade; I cared for, advocated for and managed the care of my mother, who was an Alzheimer’s patient. My mom passed away last year.
For a portion of the film, Emergency Room staff at Massachusetts General Hospital were profiled and from them I learned a about a term and a practice called “granny dumping.” I was amazed that a term exists for the practice of literally dumping one’s elder relatives at the door of a hospital Emergency Room and leaving them there. A social worker shared that this happens often when family members, decide they need a vacation, become overwhelmed or don’t know what else to do with an Alzheimer’s patient. These people literally drive up to the door of the ER, leave the elder there, and then drive off. “Granny dumping” happens most often around the holidays. My guess is that the social worker meant the winter holidays.
The medical staff takes the person in and they end up being admitted to the hospital. The staff has the job of trying to find the family or making preparations for the care of the elder via placement if they cannot find the family. This kind of admission is called a “social admit” and is one that Medicare does not pay for; and it affects the hospital’s bottom line negatively. Social admits for people who have Alzheimer’s are also difficult because the patients cannot remember their medical history and also have short-term memory loss, so they can’t tell the staff what is wrong or what happened before they got to the hospital. They don’t know what brought them to the ER, they don’t know if they have other health conditions, they don’t know what meds they regularly take. The elders in the documentary film had Alzheimer’s disease and additional health complications. This is true of most Alzheimer’s patients and it adds to the complexity of treating them and caring for them.
Over the nine years that I cared for her, my mother made several visits to the ER. I was there with her, even if it meant staying at the hospital overnight and following her to her room when she had to be admitted. I was not a “granny dumper.” I was a single woman who moved my mother into my two-bedroom apartment and tried my best to figure out how to navigate the rocky and murky waters of her care, her changing health, and her quality of life when she was 81 years old. At the time, I was 53, single, and working multiple jobs in the field of education. And despite the overwhelming prospect of my mother’s changing personality due to a disease that does not stand still, I leapt into action and took on the most challenging job I have ever held in my life. It was a labor of love and one through which I had to constantly be reminded to take care of myself. At the same time I had to look out for the well being of my mother who was becoming more and more vulnerable and dependent on me every day. I had to mother my own mother. Alzheimer’s had turned the tables on us. The common saying in the community of those who work with Alzheimer’s patients and family members is “the disease does not stand still.”
A month prior to her arrival in my home, my brother had gone to collect mom after she almost burned her house down by leaving a pot on the stove, then going into the living room and falling asleep in her recliner. I returned home from work on my late shift evening, after driving home from San Jose, and retrieved a voicemail from one of mom’s neighbors, who asked me to call her. As Susan (not her real name) relayed the events of the evening, I felt sadness and worry. Apparently two of mom’s neighbors had to call the fire department because mom had locked the storm door to her home and the neighbors could not knock on the door or ring the bell. There was a lot of smoke in the house, but it turned out that mom was okay and nothing had burned but a pot on the stove. She was lucky that her neighbors were home and that they noticed.
After this happened, my brother moved mom several states north to the temporary housing provided by his new job, and the telephone check-ins between us began. He was upset that when he came home from work, he found that mom had left crumbs and food on the kitchen counter. He also didn’t know what to do about what seemed to be signs of incontinence. So, his girlfriend and I tag teamed to provide him with suggestions and solutions. I was doing all of this by phone from the other side of the country. His girlfriend was a few states away on the same coast as he and mom were. This lasted for a month or two.
My brother’s annual trip to a motorcycle race in Monterey, California turned into an opportunity for him to bring mom out west to stay with me for what we both agreed was awhile, while we tried to figure out what to do. I thought it was a good idea. It turned out to be an opportunity for me to research resources and find out what the possibilities might be for mom’s future, for my family’s future.
My brother agreed to research resources on the East Coast near his home.
In preparation for mom’s arrival, I called any local listing that mentioned the word Alzheimer’s and was fortunate enough to be connected with one of the social workers at a local adult day health center who was more than generous with information that provided me with a running start. Alzheimer’s Services of the East Bay or ASEB literally saved our lives. They referred me to Family Caregiver Alliance (FCA), based in San Francisco. This organization serves the entire Bay Area on the ground and also online, with fact sheets and information for families nationwide who are trying to figure out what to do about caring for a loved one who has become ill with Alzheimer’s, Parkinson’s and other diseases.
The family care team from FCA visited us at my home. They noted that the space was small for both of us. At the time, I didn’t understand what they meant, since two people in a two-bedroom apartment didn’t sound like it was a cramped living situation to me. So what the second bedroom was my home office and I’d given mom my bedroom and chosen to sleep on an air mattress on the living room floor? That was the way I thought about things only a few weeks into cohabitation with someone with dementia. This sleeping and living arrangement went on for 6 months. I hadn’t bargained for what would happen when mom began to sundown, or when she constantly repeated questions, became depressed on days that the senior day program was closed and asked questions about when she would be going back home, back to her home. It was heart breaking because even though I knew she was a lot safer living with me, I knew that the disease and her being uprooted had interrupted her life in a deep and fundamental way. There was no going back to the life she’d had as a retiree and widow. There was no going back to the independence she had enjoyed for most of her life. As a matter of fact, she was headed on a trajectory toward having less physical independence in ways that neither of us could predict the timing of. We didn’t know what the progression of Alzheimer’s would look like for her. We just knew that the disease did not stand still. It never does.
At the suggestion of the family care person from FCA, I signed mom up for an in depth evaluation at the U. C. Davis Alzheimer’s Research Center. The information we’d received from the nurse practitioner and staff in her hometown was good, but not as comprehensive as the information we could receive through a comprehensive evaluation. I placed her on the waiting list at UCSF Memory and Aging Center, as they not only evaluated patients, they also followed them as patients and assigned them to a neurologist and medical team. U. C Davis only evaluated patients. I was in for a bit of a surprise when we arrived at the U. C. Davis center. I thought I was signing mom up to be evaluated, but I didn’t realize that I was being evaluated too, not as a patient, but as a family member who was part of her ecosystem of care. They wanted to know what I had been observing and how long ago I, and my brother, had first noticed changes in mom’s behavior. This was difficult stuff to not only remember because of the emotional impact it carried, but also because of the detail it required to explain what had been going on over the past few years.
The evaluation was comprehensive and included a team of specialists that included psychologists, neurologists and others. Some parts of the evaluation included both of us together around a conference table with the team of researchers and medical professionals and other parts of the evaluation included me being questioned (evaluated, really) individually while mom was in another room being evaluated. One of the more humorous parts of this half-day of evaluation was when mom told the team that she had never had heart disease or surgery. Mom was so convincing that during my individual “talk” (evaluation) with the social psychologist, I was asked whether I was sure that mom had had heart surgery. “Does she have a scar?” “Yes” I replied. “Oh, she’s good” she replied and we both laughed.