Since I was a child, my favorite color has been blue.
The color of my eyes and my mom’s and dad’s and sisters’.
The color of the sky at midday.
The color of some of my favorite clothes, although not jeans, which I never learned to like wearing.
I still like blue. I’m wearing it today.
But today, thinking of blue makes me think of how I’m feeling.
Most of my #SoCS posts in recent weeks have been giving updates about my father, who is struggling to recover from falls, broken bones, infections, and we aren’t totally sure what else, while dealing with dementia and the wear and tear of ninety-six years.
I am doing everything I can to keep him as comfortable and content as possible and he is doing much better than he was ten days ago. We finally have the rest of his things in his skilled nursing/rehab room.
His Irish-themed banner and plaque are on his door, which makes it easier for him to find his room in the hall of similar-looking doorways. We finally got a temporary phone number working, although he needs help to answer calls and we aren’t sure if he can re-learn how to dial.
It’s just hard for me not to feel blue. As much as I understand that this is just the journey we have been given in this last period of his life and that we are doing everything we can for him, I can’t help but feel sad.
All the time.
It’s hardest when I am with him, although I have a really good game face and manage to be cheerful – or seem cheerful – when I am interacting with Paco. He is sleeping quite a bit, which is probably good. Most of the time, he isn’t really aware of how much he has forgotten, so he is not blue, which is a blessing.
Last week was rough as I wrote about for Stream of Consciousness Saturday yesterday.
Today is Father’s Day in the United States. I was able to speak briefly with my dad this morning, but he was pretty confused about handling the phone and they were about to change one of his dressings. There aren’t visiting hours until Tuesday evening, so there is no chance to see him. We did drop off a card yesterday and he has gifts and cards already from my sisters.
He can’t really remember that it’s Father’s Day anyway…
Meanwhile, it is also Father’s Day for B here at our house but I’m having trouble focusing enough to plan dinner or much of anything else. It’s taking effort just to make my eyes focus to write this.
I did sleep quite a bit last night after very little sleep the night before.
Somewhere in the midst of all of this, we went out to dinner for our 39th wedding anniversary and opened some cards. Originally, we were going to go away for a couple of days. We still might, once I get through the initial care conference for Paco on Tuesday. I need to write notes and questions to prepare for that. Oh, and also get ready to deal with all the insurance folks.
No, this is, unfortunately, not going to be a post about what’s on the Top 40.
I have been scarce/non-existent here at Top of JC’s Mind for the last week because my 96-year-old dad, known here as Paco, fell in his assisted living unit last Saturday. B and I had visited him in the 1-1:30 visiting slot, but he fell about 3:00. We think he was in the kitchenette but aren’t sure. Although he hit the floor pretty hard, he managed to get himself up and over to the couch where he called for help.
He has had a few falls before, but he hit much harder this time. His left side took the force of the fall. He was sent by ambulance to the local hospital where the extent of his injuries was revealed and he was admitted with a bump and cut on his head – luckily no concussion – bruises and contusion on his left arm and elbow, deep bruising on his left hip – luckily no break – a cracked left rib, and two wing fractures of back vertebrae.
The fall, pain, unfamiliar surroundings, etc. also worsened his cognitive condition. Paco already is suffering from dementia and this fall completely unmoored him. On Wednesday, he was stable enough to transfer to a rehab unit. We are hoping that his cognition will improve as he heals and gets stronger. It’s a much calmer and more stable environment than being in the hospital.
Tomorrow is Father’s Day in the United States and it’s hard because we won’t be able to see Paco as visiting in the rehab facility is extremely limited.
The other hit that our family is trying to absorb is that we just got word that a member of our extended family has been diagnosed with metastatic cancer. She is only thirty. She is strong and fighting but everyone is devastated.
There is an old song “What a Difference a Day Makes” but today I’m thinking about what a difference a year makes.
Two years ago this spring, my mom, known here as Nana, was living in the skilled nursing section of the senior community where she and my father, Paco, had lived for ten years. She was under hospice care as she was nearing the end of her battle with heart failure. My father and I visited every day for hours with frequent visits from my daughters and granddaughter ABC, who were living with us at the time. My out-of-town sisters were able to come to visit often, too.
Nana passed away in May 2019, a few days after her 87th birthday. We were able to hold her funeral in her parish church with a visiting hour before with friends coming to comfort us. There was also a gathering at her and Paco’s senior community.
Last spring, we were all in COVID lockdown. Visiting nursing homes was totally shut down with very limited exceptions for end-of-life situations. I often thought of what that would have looked like for us, if Nana had been facing death in spring 2020 rather than 2019. We would have lost those last few weeks with her, which were painful but also filled with precious moments. We were able to bring her flowers, including her beloved lilies-of-the-valley which blossom in May, just in time for Mother’s Day and her birthday. One of the last things she was able to eat was a little fruit tart I had brought for her birthday. I helped her by cutting it and fed her as she had me when I was a baby…
In 2020, we would likely not have been allowed to visit until the very end when she was unconscious. The church was totally closed, so there would have been no funeral, not even for family.
It was hard last spring, too, because we could no longer visit Paco every day in his apartment. Although visits to independent living apartments were not totally forbidden, they were supposed to be limited, with some masked outdoor visits preferred over anything indoors. My sisters had planned to visit for Paco’s 95th birthday in March but that had to be postponed. Little did we realize at the time that that postponement would turn into cancellation.
That brings us to this spring, which is just getting underway here with some of the early bulbs flowering and the first trees starting to bud. Paco is now living in assisted living which is part of the health care center. While visiting and gathering there are still limited, my younger sister and I were able to visit him for half an hour in his apartment on his birthday and he was able to share a large birthday cake we provided with the other residents and staff on his unit later in the day. Later this month, my elder sister will be able to visit in person for the first time since last summer. She lives out-of-state so hasn’t been able to travel to New York without prohibitively lengthy quarantine, but now, with vaccines available and changes in state policy, she will finally be able to see Paco again.
We have no idea, though, if or when daughter E and granddaughter ABC will be able to visit. They moved permanently to the UK in fall 2019, joining son-in-law L in London. They have since been joined by granddaughter JG, who recently had her first tooth break through.
Spouse B, daughter T, and I would love to think that this spring we could jet off to London to meet JG in person for the first time, but it isn’t possible. Maybe this summer? It depends on conditions with the pandemic and travel restrictions.
Will we get to hold her while she is still a baby or will she be an on-the-move toddler by that time?
Will Paco ever get to meet her in person? For the UK family branch to visit the US is much more complicated and we have no idea when that will be feasible. We also, sadly, don’t know how things will go with Paco’s cognitive decline. While sometimes he remembers names of family members, sometimes he forgets them.
Sometimes, he forgets that he has great-grandchildren at all.
In 2019, I knew that spring 2020 would be very different because my mother would not be there. I could not have imagined how different 2020 would turn out to be.
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.”
On The Late Show, Stephen Colbert does a recurring skit, now a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.
In the months that my mom was in the skilled nursing unit, she had a couple of neighbors who used to shout out “Help me!”over and over to anyone passing by their rooms. There were also a handful of residents who would occasionally wander into her room and mistake my dad for their husband or me for a daughter or a staff member.
It was hard for me not to get annoyed sometimes, even though I knew that these other residents were ailing and exhibiting dementia symptoms.
As I reflected more about this, I realized that my reactions were tied to feeling helpless. I couldn’t help what was happening to these other residents and I couldn’t help what was happening to my mom.
As a caretaker, one is always trying to make things better. It hurts when that isn’t possible.
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.
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.