memory
“We think your Mom has two types of dementia, Alzheimers and Vascular Dementia.”
After several months of juggling between the three of us to get our Mom’s needs met, we of course suspected a diagnosis of dementia. Struggling to sleep the night before, dreading the meeting, dreading which type of dementia they would say, it hadn’t occurred to me that someone could have two different types of dementia at once. Part of me was still hoping that somehow this would turn out to be something else - a medication reaction, loneliness, something fixable…
Despite all the obvious symptoms, the words, like most aversive diagnoses, felt like a shock to hear. Waves of sadness, fear. It’s like you feel yourself slipping under water and the sounds of the doctors’ voices take on a distance where you have to remind yourself to listen intently.
Realizing how heavy this news is to receive, the doctor was kind enough to pause in between chunks of information to ask us if we had any questions, if we understood what she was telling us. My 78 year-old Mom never had any questions as she stared into the tele health screen on my sister’s phone with a tired, somewhat sad expression. Her only comment at the end was “I hope my age doesn’t work against me.” We asked her what she meant, to which she said, “I hope it doesn’t progress too quickly.”
The doctor could not predict how quickly either would progress. Alzheimers, in most cases, she said progresses very slowly. Vascular dementia is also hard to predict. Monitor heart health and medications, she said, to not exacerbate what she described as many mini strokes happening in my Mom’s brain. Her frontal lobe, her cerebellum…
Talk to her about memories from far into her past. They would be easier for my Mom to access because of the damage occuring in specific parts of her brain.
What feels like years ago now, my Mom was hospitalized for a bad fall on January 2, 2023. Since then, there have been multiple falls, escalating memory and cognitive symptoms, multiple doctor visits, a series of legal documents, and an emergency application for Community Medicaid that still has not come through for an in home care plan. Her savings have very quickly dwindled paying for a parade of home care attendants, most of whom did not work out.
During her last recent visit to stay with me for a long weekend, she walked out of my house into the dark suburban street in the middle of the night in her socks and pajamas. When she reached the street, she said she felt very scared - that she thought she was looking for something she couldn’t remember what, and that she knew she shouldn’t be out there. She found her way back through the dark night into the house. This time the slammed door fully awakened me so I came running downstairs. She was hyperventilating, her hand tremor exacerbated to an extreme, in wet socks from the grass, recounting the experience with terror in her eyes. She said how scared she was, and that her life before was over now, “Something’s wrong with me.” We both sat there and cried. Wide awake in terror, unable to sleep.
Watching her quiet tears, her scared but resigned realization unfolding before me, I felt her sadness, how deep the loss, for each of us. “My life is changed forever now.”
Like many awful things in life, there are often at least some silver linings. My two sisters and I have spent more time with our mom since January 2nd than we had in years. We finally found a wonderful woman who retired early and is helping our Mom for very little hourly pay, showing her such kindness that our Mom has blossomed with her. Jenny has been a wonderful friend, taking her out to get her hair done, out to lunch, buying her red lipstick and placing earrings in her ears.
Along with the losses has also come a childlike quality to our Mom. Even her voice tone sounds like a little girl sometimes when she picks up the phone and I can hear her smiling as she says in a sing-songy way, “Hi Sari.” She enjoys ice cream and blow pop lollipops with a pure joy. She gets great happiness with favorite foods, seeing us, sitting outside, watching her favorite movies (over and over and over again:). The Sound of Music and Dirty Dancing, which she now refers to as the Patrick Swayze movie because she cannot retrieve the title, are played almost daily.
This past summer, I took her to see an Abba revival group perform live. Songs from her early adulthood, when she used to go to bars, a single Mom taking space for her youthfulness. At first she sat watching, somewhat vacantly. When one of her favorite songs began, “Fernando”, I grabbed her arm and said “your song!” She looked confused, hazy, somewhat lost. When the chorus began, “There was something in the air that night…”, she reached for me with a big smile, a familiar alertness. She started to sing along. Later, as the crowd began rising to their feet to dance with pretend Abba, she shocked my kids and I, as she stood up and started dancing, making the instructed arm and hand movements. I stood next to her, my arm holding hers’ supportively like a protective mother would with a toddler learning to walk. When the grand finale came, we swayed our arms up in the air singing “Dancing Queen” together. As we were leaving, she said, “I wish we could do it all over again.” I wish so too.