Part 2
Mondays with Myrtle, a Dementia Diary
Myrtle was a fiercely independent and quick-witted woman. She was small but mighty — the energizer bunny, the philosopher, the comedienne, the warrior, the nurturer, the cook, the survivor, the mother of five, and the one woman who still is my daily reminder that every oak tree was once just a little nut an acorn which held its ground. This is Myrtle.
She was brave. She had a bias for action and knew how to make things happen. Good things. This was before dementia.
Myrtle’s confusion and forgetfulness began around age 75. But in retrospect, I know it started years before this. All five of us wondered what was happening to her, but we laughed it off, mostly. It was almost endearing, the way she’d get our names wrong and forget things. We did not know. We did not know.
But when she was 75, we knew. We knew I could not leave her alone, not even for a few hours. She left gas burners turned on; she had become belligerent; she refused to shower, and she suffered from frequent debilitating anxiety. The medication for this left her wobbly and disoriented.
It took a few weeks and many miles in the minivan to find a place for Mom. Something she could afford but which was not ghastly.
She had little money, so the well-staffed, sparkling clean retirement homes with memory care units we visited were not an option. We also visited the dimly lit, poorly funded facilities which smelled of sadness, urine, and death. Although within budget, these were utterly unacceptable.
We lucked out. It was a Home for Women in a Philadelphia neighborhood, very close to where Myrtle had lived and raised our family. Skeptical, I visited. It was a perfect fit for Mom. It was cheerful and clean. It was not a memory care facility, but most of the women living there were in some stage of dementia. In order to stay mom had to be ambulatory, she had to dress and feed herself, and she had to shower and use the bathroom without help. Thankfully, she could still do these things, but only just.
This facility dispensed all medications. They had a weekly hairdressing appointment for each of the ladies living there. They had parties on all major holidays. The food was decent, her room was warm in the winter and cool in the summer, and flowers and trees surrounded the building. We said yes and mom moved in two weeks later.
This was the beginning of my Mondays with Myrtle. I would visit mom once a week, usually Mondays. It was a long drive from my home in the Pine Barrens of NJ to the Home, and I wished I could do it more often than once per week, but I had my kids later in life and they still needed me; I was still raising kids.
Although Myrtle was deeply confused most of the time, she could walk and take part in the Home’s parties and events. She made friends easily. She ambled around from room to room, enjoying time on the screened-in porch and in the community TV room.
Myrt was a very funny lady. Always cracking jokes — she found humor in everything. She was always smiling. They liked her. She had one very good friend who was her doppelganger. We will call her Carol.
I was sitting on the bed with mom in her little room having a visit when I met Carol. She strolled in, all 90 pounds of her, and my mom introduced me as Susan (my youngest sister). I no longer correct this mistake.
Carol beamed and told me how much she loved Myrtle. As she chattered cheerily, she urinated with surprising force and generosity, right through her tiny grey slacks, creating a neat puddle at her feet. Mom, sitting in her rocker not two yards away, did not notice.
They each wore Mardi gras necklaces, which they kept toying with. They kept laughing and smiling. I tried with some effort to ignore the puddle on the floor. Carol did not seem to know she had peed a full quart onto the floor and mom didn’t know either. I missed a few beats in our festive exchange, but these two ladies were too happy in each other’s company to notice or care. That taught me something.
After mom had been at the Home for a couple of years, one of the staff confided in me that each week, Mom wept bitterly for hours after I left. This was a blow, it was. It reached back in time and took away the joy I had stored there from the good feeling I had in being a good daughter, visiting every week. It also reached ahead and made me more anxious about my departures. I don’t think the staff person meant any harm at all. When your loved one is being cared for by others, as dementia chips away at their minds, you don’t really want to know everything. The loss is so massive and ongoing, you can only survive by pretending all is well when you are not there.
Mom lived at the Home happily for 5 years. In the first year, she had a phone in her room. But she started calling my brother and my sister, constantly. She never called me and never called my oldest brother or my youngest sister.
None of us know how she made her choices in this behavior, but she was relentless. She’d call them at all hours, crying and demanding to be let out of prison. My poor siblings would call the front desk and they’d send an aide to check on mom. Mom would either be sleeping, or she’d have no memory whatsoever of the calls.
We disconnected the phone. She continued calling, but, of course, the calls went nowhere. There was no dial tone. Myrtle never realized this. Sometimes when I visited her, she’d be talking on the phone. This was weird. She thought there was someone on the other end, but I could see easily that the phone was not even plugged in. She’d always say that she was chatting with her father.
My Mondays with Myrtle continued and so did her steady decline. She could not remember the names of her grandchildren. She did not know where she was, how she got there, or how long she had been there. I visited mom once a week and every time I got there, she would tell me how she had just arrived at the Home and how she wasn’t planning to stay. “This place is ok, but I’m leaving tomorrow. My father is waiting for me.” Her father had died over 50 years ago.
She never wanted me to leave, but I had a long, arduous drive back to my home. It took well over an hour one way and could be much longer if I got stuck in business commuter traffic. The hardest part of visiting was walking away, knowing that she had only a child’s grasp on time, if that.
She never remembered my visits. Every week when she saw me, she asked why I so rarely visited. It was useless to object or explain, information was like a wisp of smoke, vanishing in seconds. Also, she became agitated, often responding angrily, “No, you have not visited me in years, I’d remember that!”
She’d forget who I was half-way through my visit. She’d just sit smiling at me, politely, and I could see my stranger status reflected in her eyes.
I always took her outside for a walk. She could not actually walk on concrete — she used a wheelchair outside, and the Home permitted it, despite their rule about no wheelchairs. I’d wheel her up and down Leverington Avenue and sometimes down Ridge Avenue and she’d marvel over how things had changed. “Woolworth’s was in that building there, Rosemary, do you remember that?” she asked one day. Wow. She knows it is me pushing the wheelchair and she is reporting a real memory!
“Oh, yes, Mom! I sure do remember it. You’d let me get a coca-cola and a grilled cheese sandwich if you were in a good mood,” I chided her. Myrtle was giggling like a young girl, now. “Ha!” she replied, conspiratorially, “I always pretended to be in a bad mood when I didn’t have enough money for that stuff.” Wow. I never knew this, but it rang true. I let myself cry. I was behind her, pushing. She couldn’t see. It would have confused her.
In her last two years at the Home, she fell a few times, resulting in hospitalizations. Although she rarely injured herself seriously, the hospital stays seemed to rob her of the last few bits of neuro-connectivity she owned. She became unhinged. Lost. Cognitively stranded. It was written on the lines of her face and in her eyes. She’d recognize someone or something and would desperately try to hold on but these touch downs were fleeting. It was so brutal to witness a temporary relief wash over her, only to see it quickly displaced by abject terror.
Hospitalizations made her physically weak, too. They’d keep her in a bed for two or three days and during this time, she’d lose the strength, balance, and desire to stand.
Because of the hospitalizations, she lost the ability to stand and walk in 2016 and the management at lovely home in which she had lived said she had to leave. This was the end of five years of Mondays with Myrtle. It was also the beginning of the hardest phase of her decline.
A few things I learned ~
Remember the good you do your loved one when you visit. Congratulate yourself for every visit. You must find your own comfort in doing the right thing — spending time with them. They might accuse you of abandonment. They might not remember your visits. This is something to endure. Do something kind in each visit. Comb her hair, help him shave, rub lotion on her hands and arms, bring a favorite treat — do this for yourself, for your memory of the visit. And do not despair when they do not remember.
The heart has a different operating system. The heart knows what the mind cannot. Your efforts, your kindnesses and your gifts are like yesterday’s sunshine. Gone today, yes. But yesterday that sunshine nourished. It mattered and it is stored in a place you will see years from now.
When a loved one’s mind is pierced with this permafrost of forgetting, you have brief, imperfect moments — in between their hallucinations, rage, confusion, grief and psychosis — moments of recognition, gratitude and pleasure. These moments, however flawed and fragmented, truly matter. Remember the value of yesterday’s sunshine.
