Dealing with dementia

AARP recently published a gut-wrenching, heart-warming article entitled Tony Bennett’s Battle with Alzheimer’s.

Alzheimer’s runs in my father’s family. Paco’s father and all three of his siblings who survived into their seventies struggled with it. Because of his history, Paco enrolled in a long-term medical study on the effects of medications as possible preventatives for symptoms of the disease, which, unfortunately, did not find any effective medications.

As Paco aged well beyond the onset age of his afflicted family members without symptoms, we were relieved, as it looked like he might have avoided those particular family genes. People did always say that he took after his mother’s side of the family.

There are, however, other types of dementia, the risks of which increase with age. Paco, who will turn 96 next month, is suffering from some unnamed type of dementia. We are grateful that, while the memory loss is problematic, he has retained his generally cheerful disposition, sparing us all the personality changes that were so jarring in Paco’s father and siblings.

He has been having memory loss and cognitive problems for several years, which we had been managing with daily visits, phone calls, notes, pill organizers, and staff help. Things got immensely more complicated when COVID limited our in-person visits and disrupted Paco’s daily routine. It also made a possible move to the assisted living unit where his care could be better addressed more difficult, as family visits were nearly impossible for months.

When Paco became ill and was hospitalized in December, the decision to move out of his independent living apartment was made for us. There was no way that he could be safe without 24/7 staff availability, which he now has in the assisted living unit, where he has his own living room, kitchenette, bedroom, and bathroom along with three daily meals plus snacks, a nurse to manage and deliver his medications, aides to assist with activities, and the company of the other residents, all of whom have now been vaccinated against COVID-19 and most of whom he knew because they also started out in Independent Living in their senior community. Unfortunately, in-person visiting of people outside the unit is severely restricted, although I’m hoping that increasing vaccination rates and warmer weather permitting outdoor visits will ease the situation in the coming months.

Because I genuinely do try to address issues that are on the top of my mind here, it’s been difficult not to write about Paco’s dementia more directly over these last years. For a good chunk of that time, I avoided it because Paco followed my posts via email and I was afraid posting about it would further confuse or upset him. Now, he is well beyond being able to navigate email and websites, so I don’t have that worry – and the few people who read my blog and know Paco in real life already know the situation.

In truth, I’ve also had difficulty articulating my thoughts and feelings around this. Although my family dealt with cognitive decline with both my mother and father-in-law when they were terminally ill, Paco’s long, slow loss of memory has been even more excruciating. While I can adjust to the loss of short-term memory that results in answering the same question multiple times in a short phone conversation, I have a harder time dealing with the loss of long-time skills and words. When he can be looking at a dinner plate with his favorite food but not remember what it is. When he forgets the name of someone he has known for decades. When he, who was always meticulous in following his finances, can no longer add numbers.

It’s painful. Every time. And hard to express in words. Even in poetry.

My consolation is that it is seldom upsetting to him. By some grace, he is handling things with equanimity with only occasional moments of frustration.

He keeps reminding me of his favorite saying, “We’ll take it one day at a time.”

Finding Dory, family, and memory

I love Pixar.

I love that they have a short before the feature film. Before Finding Dory, there is Piper, the wordless story of a young sandpiper learning to find food on its own. The animation is so stunning that in the first moments I thought it was photographed rather than animated. The story is also incredibly endearing, which is another Pixar trademark.

I love that there are bonuses, like references to other Pixar films and little final scenes after the credits. It was a shame we were the only ones left in the theater to see the special Finding Nemo flashback scene at the end of Finding Dory.

What I love most, though, is the richness of the storytelling. All Pixar movies work on multiple levels. They certainly appeal to children and impart life lessons as all worthy tales do, but they also appeal to adults across the age spectrum with further layers of meaning.

Finding Dory is about finding family, both in the sense of family of origin and the family that we can make for ourselves through deep friendship. The resilience of family bonds in the face of great challenge is on full display.

For me, there was an additional family connection. One of the key elements of Dory’s character is that she suffers from short term memory loss.  In this film, there is an added element of vivid distant memories that re-surface.  It reminded me of the stage of Alzheimer’s disease where the person can’t remember what happened a minute ago but can remember what happened many years before.

It was especially poignant because my 91-year-old dad just lost his last sibling, who like their father and two other siblings, had suffered with Alzheimer’s disease. We have also known other people with Alzheimer’s or other forms of dementia and are familiar with the frustrations, fears, and dangers it causes, both to the persons with memory loss and the people around them.

There isn’t a cure, just ways of compensating and adjusting as best one can, moment to moment, trusting that , somehow, the bonds of family will be strong enough to draw us together and back to ourselves.

 

Alzheimer’s article

A blogger-friend Susan Cushman posted a link to this excellent article on dealing with Alzheimer’s disease.

There is significant history of Alzheimer’s disease in my family. My paternal grandfather and two of my aunts and one uncle were affected. We are very lucky that my dad, who is now ninety, has not been affected and is well past the age at which his own father and his siblings first had symptoms.

My parents have also had many friends who have developed Alzheimer’s or other forms of dementia.  There was so much in Dasha Kiper’s piece that was familiar to me from listening to my parents, from symptoms to everyday life to reactions of caregivers and family.

Enough from me, because the article is on the longer side and I’d much rather you spent your time reading Ms. Kiper’s words rather than mine.

A Valentine’s funeral

Valentine’s Day morning found B and I in North Adams MA to attend the funeral of my aunt Helen. We were there not only to pay our own respects but also as representatives of the rest of my family, especially my parents who are not up to extended cold-weather car trips any more.

The funeral was small, mostly nieces and nephews with their spouses. I especially wanted to thank Marcia and Carl, who are related through Helen’s husband Stewart, who died several years ago, as they had been the ones who had visited and run errands for Helen and Stewart through over ten years in the nursing home. My mom and Marcia often spoke by phone, so that my parents could keep up with news of Helen, especially after she couldn’t talk to my dad on the phone herself.

Helen’s longtime Baptist minister led the service, with my cousin Cairn giving the eulogy. I read a Bible passage, 1 Corinthians 13, which was a favorite of both Helen’s and mine. Cairn thoughtfully gave me Helen’s personal Bible, given to her almost eighty years ago in Sunday school, her name embossed in gold on the black leather cover, with dried flowers, ribbons, prayer cards, a church bulletin, bookmarks, and copies of her parents’ obituaries tucked among the pages. There were old photos on display in the funeral home and one of her stenographer’s notebooks, showing her skill at the now-lost art of shorthand.

Most of the remembrances of Helen were from her younger days as the eldest of seven children and later as a devoted spouse, watchful aunt, and super-efficient and respected executive secretary, the time period that I remember.  We lived about twenty miles away and would often visit at their home on the weekends. I remember playing with my sisters in their large backyard and attending holiday parties that Helen loved to host. Helen would often compose little poems for special occasions and liked to have people contribute to celebrations. I remember one Christmas party when we were each to bring something for the tree and my older sister made oil of wintergreen in the school chemistry lab as her offering.

Helen’s last decade-plus was very different, as she developed Alzheimer’s. While some things stayed constant until very nearly the end – her love of coffee, her joy in attending and singing at church services, her fondness for dolls and stuffed animals – others were permanently lost. In many ways, the woman that we all knew has been gone much longer than the days since her death earlier this month.

Born in 1922, Helen was the eldest of seven. My father, who turns 90 in a few weeks, was the third child and first son in the family. Of the four children who lived past the age of 70, my father is the only one not to have succumbed to Alzheimer’s, as their father had. My dad’s only surviving sibling is his youngest brother who is currently living in a nursing home in CT. My dad is the only one left who can recall the old family lore. I’ve been asked with such strong family history how my father has been spared; everyone always said that he took after his mother’s side of the family and perhaps that is what saved him from developing Alzheimer’s.

Despite the cold and snowy New England winter, we were able to bring Helen to the cemetery after the service where she is now resting beside her husband. It wasn’t until we arrived there and saw the headstone that I remembered she will also be resting beside her youngest sibling – and Cairn’s mother – Bev, who we lost decades ago to eclampsia. Bev was born on Helen’s 17th birthday and now the oldest and the youngest are finally reunited.

Rest in peace, Millie

It’s past bedtime, but I have just been sending out some emails about the death of a friend’s mom.

The friendship goes back over thirty years and is rooted in the parish I belonged to from 1983-2005. My friend was the music and liturgy director and I volunteered extensively in those ministries. She is godmother to my younger daughter.

Her mom has been struggling for years with Alzheimer’s, a disease that is unfortunately all too familiar. My grandfather, two aunts, and an uncle all had Alzheimer’s, so I know some of the possibilities and complications of the disease, although one of the features of it is its unpredictability. Still, my friend and her family knew that her mom’s death was imminent and were able to gather for these last few days to be with her and each other, which I’m sure gave them strength and comfort.

The funeral will be at the church where my friend currently serves and where my daughter has been singing in the choir. My friend will be playing the organ and directing the music for the funeral. My daughter will be singing with the combined choirs and I will be writing the prayer petitions that end the liturgy of the word.

When someone has been suffering for so long, it is hard to say that you are sorry to hear of their death. While I am sorry for the family to lose a wife, mother, grandmother, and aunt, in truth, they have been losing her little by little for years. What is comforting is that, in our tradition, we believe that she is in now experiencing eternal peace and joy in heaven, freed from all suffering and illness.

Millie, as the choir will sing at the funeral, “may the angels lead you into paradise.”