I love you bigger than the sky

I’ve had a hard time knowing what to do with the shock and grief I’ve felt in response to the recent school shooting. Yes, we must demand gun control. Yes, we can hold those we love dear and send prayers and support to the affected families and community. Other writer friends have expressed that they also need to keep writing. Even now. It is what we do for our own mental health, even when it feels selfish. Maybe it is grief that influenced this much longer than usual blog, even if it’s not about the horrid event last week.

As Mom napped during her last months in my home, I scribbled out notes for the next book I thought I might write, while I too made the “final final” edits to Humanity’s Grace. I knew people did graduate hospice’s six months, but never believed Mom would be one to go beyond a few. It turned out to be six weeks, including the two of the ice storm. If spirits reunite somewhere in the afterworld, I’m certain our dad – one always with a smart quip – uttered: “Patty, you always had to be the tough one!” She who without complaint rested in a hospital bed, without power in an unheated house relying on hot water bottles for warmth and food cooked by camp stove.

I imagined then this next book to be a memoir: I Love You Bigger Than The Sky: My Life as Daughter, Best Friend and Caregiver. Some time later, though, the topic felt tired. Overdone. Yes, each of us has our unique life story, but how many books need to be written about accompanying our parents through their final years? Although I had drafted a few thousand words, I dropped the idea and began to focus on other things.

This week I read Amy Bloom’s In Love: A Memoir of Love and Loss. The next day as I pedaled through favorite places, my brain spun thoughts faster than I could keep up with. Yes, I do still have stories to share about my journey with Mom – even if the theme feels tired or overdone. Maybe someday these blogs I have written about her journey experiencing dementia will become a book of sorts – like Then Now and In Between. Maybe not. No promises; simply an idea percolating with others in my unstructured thought bank. Regardless of where that goes, I am grateful I once checked in with Mom to ask permission to write about her. “Of course” she told me, without hesitation.

Mom’s journey with dementia lasted about a decade, though I wouldn’t have identified it that way then. At first it was little things, as others share, such as repeating a question. Those first several years we called it minor cognitive impairment, graduating into “moderate.” Early into this, Dad was having his own heart issues, and thankfully they moved from their multi-level condo before either of them fell on its steep stairs, delighted to move into a one level, three-bedroom apartment near my home: equipped with an exercise room where Dad pedaled up to his last day. Mom joined the Adult Community Center, met new friends, and walked for years to her weekly writing group. She died three weeks before her 88th birthday after five days without food and water. I’m grateful that period was short and from what we could tell, peaceful until the final gasping of air, or death rattles.

Mom knew from the start that her memory was challenged and she worried about it. She never denied it to us, and I know she felt relieved when we talked openly about it. Mom told me the hardest thing for her upon further decline, was her fear that people thought she was stupid. “You are just as intelligent as always,” I would say. “It’s just that your brain has changed and it can’t work like it did before.” That seemed to bring her relief: it was clear that her intelligence was what she valued about herself above almost all else, making it hard to accept mental decline.

I unexpectedly came upon old voice mail messages from my parents. One captures Dad in his “trying to be polite but urgent” voice telling me the date and time for his next PT appointment, hoping it might work for me to drive him. In another – in an anxious voice – Mom says she is waiting for a ride from my daughter for an outing, and she apologizes as she wonders if she had the date or time wrong. That one makes me sad, even though I love to hear her voice.

“I have been losing things for quite a while, but lately it has become a problem and, worse, my family knows about it. First, it was my short-term memory that began slipping. “Oh that’s okay, I told myself. I will start making notes and lists and notes to help me remember. That lasted awhile, but then I started losing my lists or post it notes...My daughter, after spending time with me, encouraged me with statements like, “Mom, you’re not losing it. Just think how many things we have talked about and your memory is just fine!” (My sneaky mistrusting mind says, “She doesn’t really know what I am going through, and how much energy it takes to keep my calendars updated and checked. So then I become obsessive, checking on our large-print calendar, to see what I might be missing. Sometimes I am so upset I go to bed with my covers over my head. …Invariably I hear a tap on the door, and it’s either my daughter or granddaughter’s sunny voice, “Hi Gaga! How’s everything? Can I do anything for you?” In my heart of hearts I believe I could handle one of the two handicaps: worsening AMD or memory loss.” I don’t know what will happen, but I pray I won’t have to play this game of charades too long or that my kids will call a family gathering to discuss “What should we do about mother?”
Losing Things, Patty’s Writing Group Entry, (~2014)

She and Dad shared the same internist and would book appointments together in Dad’s last year or two of life. Their approaches to the Medicare required “memory” test were from opposite camps: Dad didn’t care how he did and held no worries about his memory, which remained crystal until his death at 84. Mom, however, worried about the test even a day before, and likely even practiced for it. When Dad was asked to count backwards by sevens from 100, he kindly asked the medical assistant: You know I flunked math? (Dad was dyslexic and known to be a word guy, not a man of numbers.) That was his final answer and the MA knew to move on. In contrast, Mom sat there visibly anxious while Dad told us all how she was an (overachieving) straight A student, while he was pleased to pass with Cs.

My dad called me one night in 2014, quite upset. Mom had told him that perhaps she should move into a facility because of her memory. That was our mom: worried about impacting others, feeling guilty in a way that makes no sense to me but is explained by who she was. I calmed Dad down and agreed with him. The solution? Mom and I visited the assisted living center next to their apartment (the previous year she and I had toured many in the Portland area before deciding that the apartment made the most sense). She liked the staff we met, the location and the enrichment opportunities: she knew the neighborhood walks and would still be able to walk to the adult community center. She commanded Dad to visit too – just in case; for their “backup” plan. True to Dad’s style, he walked over and took a solo short spin in the front room (no need to talk to anyone), looked out the window at the grounds and returned home to tell Patty it was fine. I know he felt he would hate living there, but would do anything to soothe this woman he loved. Had he outlived our mom, I am certain he would have stayed in his apartment. Although I still miss Dad each day and would have loved for him to live longer, I am grateful he didn’t have to watch this love of his life move through later stage dementia.

I appreciated it when Mom’s doctor stopped giving her “the” memory test, knowing the anxiety it caused her. (He knew her well and was the one to diagnose Lupus nearly two decades earlier.) Instead, he had her read a short article when her vision still allowed it, and ask her about it. By then, Dad had died and Mom had chosen to move into the assisted living facility: what her doctor cared about most was her ability to safely get about her day, which she could. He felt no need to refer her to a neurologist, which I still believe was the right thing. Later he prescribed Aricept –who knows if that helped–and she was eventually taken off it. She loved her walks, and when a friend or family member wasn’t available she still walked three or so miles on her own. Until the day she got lost, and a kind woman gave her a lift home. The facility called me, demanding that the time had come when Patty shouldn’t go on walks alone other than to the nearby Safeway and community center. (At the time I remember wondering if it was memory or vision or the confusing winding array of roads?) As usual, our mom was embarrassed, not infuriated.

Mom and I decided seeing a mental health counselor might be beneficial to her, to have somebody to confide in who was not a daughter, granddaughter or friend. I did my research and she tried out two. The first was kind, understood Mom and she liked him but after the second visit he told us there really wasn’t anything he could do to help since she couldn’t always remember what they discussed. The second I found with an outfit that specialized working with those with dementia and other brain challenges. They begin with testing (the kind that freaks Mom out) – telling me what I already knew then, she was somewhere in the “moderately cognitively impaired” spectrum. I sat in on two more sessions with their selected therapist, but pulled her out after a session when the therapist rolled her eyes at something Mom said. Maybe she thought Mom’s vision was such that she couldn’t see her but I was appalled. The therapist said the only treatment she could suggest was medication for anxiety and depression. I found one other helpful professional – a psychiatric nurse who made house calls and loved talking with mom. She was the only professional to say what I always suspected: Mom’s dementia sometimes seemed worse than it really was because of her increasingly declining vision. But we both recognized Patty was not in need of the specialized support this too-busy professional needed to address. All this is to say that for our mom, social interactions with her beloved children, spouses and grandchildren, kind friends who stayed in contact (yes, it takes a true friend to keep this up during the declines of memory), and trips in nature and favorite places, were the most important supports to Mom’s mental health for the rest of her life. Yes, the power of support without judgement.

Although I’m not sure when Mom had her first brain scan, she had her second after she broke her hip. After she had gone through rehab and was walking again, I took her to a neurologist at OHSU, mostly to rule out a condition I’d read about (normal pressure hydrocephalus – NPH) for which some therapeutic solutions exist. We had a fabulous tram ride and a cup of tea at the top, and Mom was told no to NPH and that she most likely had vascular dementia rather than Alzheimers, although we know the two can coexist. I spent a lot of time trying to figure out why (none of her 5 sisters living into their 80s and 90s had memory issues, her history included Lupus and taking Ativan, anxiety….) before forcing myself to understand that none of knowing that mattered now, or would “fix” dementia, and was exhausting to me.

Throughout our Mother-Daughter Journey, I have recognized and honored Mom’s spirit of caring for others, sometimes at her own expense. She never wanted to be a burden and never denied her dementia, or fought our attempts to help her (except three isolated times newly in our house when, I realize now, she might have felt ganged up on when two of us attempted to help with basic care). It may have only been in the final month or two when she might not have been able to have identified it: but it was then she knew her body and spirit were simply tired. She had moved from not being able to do those things – carry on multiple tasks or involved complicated conversations – to being too exhausted to worry about any of it. And so we didn’t as she listened to us read her books, enjoyed unlimited music, and she would still wake up in the morning with a big smile and a thank you until that final week.

I have several spiral notebooks of hers that I still can’t let go of. It wasn’t until I looked at them closely, when I understood they are diaries she wrote to help her remember the day: her way to seal memories. Our mom was known by her kids to have extremely difficult to read handwriting. She wrote these entries with worsening vision, and they are almost impossible to decipher. I can pull out phrases like “had a lovely walk with Dede today” or “walked up to my writing group, love my friends.” Maybe that’s all I need to know. And while I don’t believe Mom would have had the desire or courage to cut her life shorter before her memory had declined toward the end, like Amy Bloom’s husband, she would have respected others who make that choice. Instead, her body and spirit did make that decision when she was absolutely done, in those final five days. Yes, Mom. I will Love You Bigger Than The Sky. Always.