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.”

the meaning of January

Linda’s Just Jot It January is designed that anything one jots down can be transformed into a #JusJoJan post of the day.

Fortunately for all of you, I haven’t been taking this literally.

Otherwise, my January would be filled with texts, emails, and long lists of questions and reminders as I have tried to navigate the complexities of dealing with the care of my father, known here as Paco, in the time of COVID.

As the new year began, Paco was nearing the end of a stay in the rehab/skilled nursing unit in the health care center of his senior community, following five days in the hospital in mid-December. We were trying to finalize his move into the assisted living unit, which also triggered the need to close out his independent living apartment as soon as practicable. There were also issues with his medical and personal care to deal with – and, due to COVID restrictions, it all had to be done by phone or email or picking up and dropping off documents and forms and signed permissions, with only occasional in-person contact, none of which could be with Paco.

It’s been, in turns, confusing and frustrating and harried and bureaucratic – and perpetually exhausting.

It’s also been very difficult to write about.

So, here I am, trying once again to sum up the situation and convey it in words, unsure that I am capable of doing so.

A few days before Paco move to assisted living, we noticed that he was struggling with some everyday kinds of things like using the telephone. I expected that an infection he had had had returned and managed to convince the medical team to test for it. It turned out that I was correct but the test results didn’t come back until Paco had already moved to his new place in assisted. He was started on a new medication, but the combination of the infection, medications, being in a new environment, having to do another 14-day COVID quarantine because he had moved to a new unit within the health care building, and not being able to see family or have them help him set up his new place has made an already daunting situation extremely difficult.

I am doing the best that I can to care for him, but it is not good enough and I can’t manage to fix everything in a timely way. I’ve made some progress but the pace has been slow. While I am not by nature an impatient person, after so many weeks of this, I am frustrated and immeasurably sad.

The comfort I have is that Paco is seemingly unaware of all the complexities of the situation. He doesn’t usually remember the things he used to do before this latest illness, so he isn’t really missing them. While his memory is impaired at this point, he has not had the personality changes that affected other members of his family when they developed dementia, so he is generally in a good mood, although his fatigue level does sometimes put a damper on things.

So, here we are, starting another week. There are more lists of things to do, people to call, tasks to accomplish. One big thing that is (nearly) completed is the closing out of Paco’s old apartment. I turned the keys in last week, but the person I needed to interface with wasn’t there, so I’m not entirely sure we’re finished with the process.

Sometimes, people choose a word or phrase for the new year. Perhaps, for me, this will be the year of “not entirely sure.”

Like last year, 2021 may be a year of uncertainty.

March 17

Today is March 17, which is usually celebrated as Saint Patrick’s Day. Although it is a feast day for Saint Patrick in the Catholic church, it is generally celebrated in the United States also as a secular holiday with parades, Irish food, and, in many cases, way too much alcohol.

This year, with COVID-19 social distancing protocols in place, things are very, very quiet. Paco will still get to have corned beef and cabbage and potatoes, but he will be eating it in his apartment instead of a dining room filled with his senior living community friends wearing green and sitting at tables decorated for the occasion.

Fun fact:  Paco’s middle name is Patrick. He finally got to visit Ireland, the home of his grandparents, last fall.
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B’s side of the family had some different March 17th traditions. B’s dad was an elementary school principal who had a running joke with his students and staff. He celebrated March 17th as Evacuation Day, which commemorates the British leaving Boston on that date in 1776 after an eleven month siege, under pressure by the Continental Army, commanded by George Washington and bolstered by cannons captured from Fort Ticonderoga. Parts of Massachusetts celebrated it as an official holiday, although not the western part of the state where his school was located. He used to make an announcement on the public address system in the morning and even designed an evacuation day card which he printed with his then-new dot matrix printer.

He also used to buy an “evacuation day” bouquet for B’s mom, known here at TJCM as Grandma. After he passed away, B and I continued the tradition of giving Grandma evacuation day flowers, first ordering them delivered to her home from their favorite local florist and then bringing them in person after she moved to our area.

In 2016, we changed it up a bit and gave Grandma a planter. We had no way of knowing that she would pass away after a heart attack a few days later. Our daughter T, who has a special affinity for plants, took over care of the planter, eventually having to separate the plants into different pots as they grew too large.

Today, the African violet and the kalanchoe from the planter are in full bloom.

On the dining room table, is an evacuation day bouquet that B bought for T.

One-Liner Wednesday: Ben Franklin

“Tell me and I forget, teach me and I may remember, involve me and I learn.”
~~~ Benjamin Franklin

Join us for Linda’s One-Liner Wednesdays! Find out how here:
https://lindaghill.com/2018/02/07/one-liner-wednesday-you-know-youve-made-it/

 

tea party

After B’s mom, known here on the blog as Grandma, passed away almost two years ago, one of the things we inherited was her teacup cupboard and most of her teacups, some of which she had collected over the years and some that had come to her through her mother and aunt.

While some people collect objects just to look at them, Grandma made use of her collection, choosing cups to use for coffee after Sunday dinners, birthdays, and holidays in the Vermont home where she lived for decades.

She had distributed a few cups to younger family members over the years, but kept most of the collection together, moving it to the senior living community near us a few years before her death.

After she passed away, B’s brother and his family chose a few teacups to remind them of Grandma, but dozens of them set up residence in our dining room, stacked in the white barristers that Grandma had used.

One of the special happenings this holiday season during L’s visit has been a series of evening teaparties with L, E, and T enjoying tea and treats. They have been working their way methodically through the cupboard, starting with the top shelf and using each cup in each stack as it presents itself, along with its matching saucer, of course. They have been brewing loose tea – from an Adagio Teas sampler that E bought for T as a Christmas gift – in a teapot and using Grandma’s china tea strainer to pour into that evening’s cups.

It warms our hearts to see Grandma’s granddaughters and grandson-in-law using her cups together.

Grandma would approve.
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Join us for Linda’s Just Jot It January! Find out how here: https://lindaghill.com/2018/01/07/jusjojan-daily-prompt-january-7th-2018/

 

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.

 

SoCS: Memory

Memory is both a blessing and a curse.

There are so many wonderful memories – of my daughters growing up, of contentment with my spouse, of the many decades of life with my parents close by, of extended family gatherings, of singing and playing music, of wonderful discussions with friends, of seeing beautiful sights, so much loveliness in the world…

But somehow the dark memories intrude, even when I attempt to push them away – the pain of seeing my daughters struggle against illness, the bewildering journey of the last six months of my father-in-law’s life, the health issues with the remaining family elders, the loss of my family’s beloved parish to an abuse of power, the ongoing tragedies of war, racism, exploitation, sexism, oppression which rely on memory to keep old grievances and what should be bygone practices alive…

What to do? Try to use the positive memories to give strength to heal the legacy of the dark memories.

Easier said than done.

This post is part of Linda’s Stream of Consciousness Saturdays. The prompt is “memory”. Join us! Find out how here:  http://lindaghill.com/2014/10/31/the-friday-reminder-and-prompt-for-socs-november-114/

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Badge by Doobster @Mindful DIgressions