While I did manage one post in line with my new mode, a complication has arisen with Paco’s health. I’ve had very little sleep and no real idea of what today will bring.
This is where I would usually say something like “stay tuned” but I have no idea if it will be a few hours or a few days or longer before I have an opportunity to post again – about Paco or anything else.
I’ll be heading over to the nursing home as soon as we get to a reasonable hour – unless the phone rings before a reasonable hour arrives…
I have been posting less than usual over the last couple of months as we have been dealing with health difficulties with my father, known here as Paco. He had a couple of falls in June, resulting in some cracked bones, which have been healing well while he has been in a rehab program. Unfortunately, he also suffers from dementia, which has worsened, and from a number of other health conditions, which are not unexpected in a 96-year-old but which have necessitated remaining in a nursing home rather than being able to move back to the assisted living floor where he lived previously.
It has taken a lot of time with in-person visiting and inordinate amounts of time dealing with paperwork and red tape. My sisters have been coming into town to help, but I am still not finding time to write as much as I would like.
On Monday, I’m happy to report that the UK contingent of our family – our daughter E, her spouse L, and their two children 4-year-old ABC and just turned 1-year-old JG – arrived from London for a two week visit. It is our first opportunity to meet JG in person. She is adjusting to our actually being flesh-and-blood people rather than images on a screen. It’s amazing that she is able to deal with being a different place with different people after being in lockdown so much of her life, especially when you consider it took two large airports, a plane, and the longest car ride of her life to get here. Also, five hours worth of jetlag. It’s also amazing how much ABC remembers from when she lived with us, given that this is her first time back here since she moved to the UK in October 2019.
Because of the delta variant’s prevalence, we haven’t ventured much from the house over these last days and probably won’t be taking the children to many indoor spaces, given that they are too young to have been vaccinated. We do plan a visit to Paco later this week. When the weather is better, we will also be able to go to the parks and take rides on the carousels for which Broome County is known.
My younger sister is here visiting and helping with Paco and my older sister and her spouse will arrive next week for a few days. My plan is to carve out a bit of time for some posts which will update topics about which I frequently post; I’m hoping to be brief, which is always a challenge for me!
Let’s see if I manage to follow through with this plan…
Or maybe I only believe in luck, given that no amount of thought, planning, and preparation seems adequate?
Hard to say…
Was it lucky that Paco, after literally months of not being able to even remember how to even answer his phone, suddenly remembered how yesterday?
I thought that maybe he was recovering some brain function that we thought had been permanently lost in his falls in June.
Or was it unlucky because he called me at 12:45 AM to ask about a dental appointment that was on his calendar that he didn’t remember going to?
I called the aide station and asked for them to remove the receivers from his room. I also hoped that he would go to sleep. It was odd that he was awake at that hour because he hadn’t slept much during the day, either, and lately he has been napping extensively and sleeping all night.
At 1:45 AM, my phone rang again. It was Paco, calling to tell me that his phone wasn’t working. The aide hadn’t realized that there were two wireless handsets and Paco had found the second one, most likely the one on the homebase that was hidden behind his television.
I called the aide station to ask them to get the second handset out of there, which they presumably did, but I, who had only slept maybe an hour before the first call came in and not since, still couldn’t go back to sleep so I got up and did a bit of correspondence and finally went to sleep sometime after 3:30.
Of course, I was awake by 7.
On Saturday morning, the nursing home has a singalong at 10:00. Singalongs are by far Paco’s favorite activity, so I had planned to stay at home this morning and spend a few hours finishing touch-ups and a cover letter to submit my poetry collection to a press for consideration, but I don’t know if I have enough brain to do it.
Stream of consciousness blogging is one thing; editing poetry and following detailed submission instructions is another. I’m not sure my brain can handle the second.
It’s too bad I don’t drink coffee.
Or anything with caffeine.
Or that my body doesn’t seem to have the same effects from caffeine that most people do.
So, if I’m lucky, at some point this weekend, I’ll have enough brainpower to get the manuscript sent out.
If I’m really lucky, Paco will retain his phone calling ability while regaining his sense of night and day, which seemed to have failed him yesterday even as his phone skills reappeared.
But, yeah, it’s not really about luck, is it?
It’s about dementia and its progression and my worry and the taxing of my coping skills after so many years of caregiving for a succession of people with myriad needs.
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.
The day after I wrote the post linked above, Paco’s condition deteriorated and I made the decision to send him to the emergency room. After the initial check-in, I was allowed to be with him. The ER team was very thorough and found that he was dehydrated and had three new fractures in his lumbar vertebrae. After some IV fluids, he went back to the rehab facility by ambulance at 3 AM.
I caught a nap and was very grateful to learn that my older sister had moved up a planned visit and would arrive that afternoon. She spent a lot of time with Paco on compassionate care visits while I worked out a lot of logistics. It turned out that a rehab room opened up within his senior community; the place where he currently was in rehab was a sister facility in a nearby city. Paco was set to move back on Friday and I spent a lot of time packing up things in his assisted living unit, some to send up to his rehab room there and some to bring back to our house as we had decided to give up his place in assisted, as we know he won’t be well enough to return there any time soon – and may never recover to that point.
The plan on Friday had been that our family would finish clearing out his place in assisted and help Paco to get settled into rehab, but we arrived to find that someone in the assisted wing had tested positive for COVID, so it had to go into lockdown. Fortunately, this didn’t affect Paco’s move and he arrived safely via medivan. I signed yet another cache of documents and was allowed a short visit to help him get settled.
Unfortunately, our hard-won rights to expanded compassionate care visits got lost in the bureaucracy with the impending holiday weekend adding another layer of complications with so many staff away on vacation. I was able to get permission for some extra visiting time over the weekend but face another round of changing personnel, location, rules, etc. this coming week.
Meanwhile, Paco is confused and exhausted. The silver lining is that his pain level is generally low.
The big question mark remains how much recovery is possible in regards to daily living functions. I don’t know if the rehab team will be able to make a valid prediction or not.
It may be a situation of wait and watch and work and hope and pray and see where we end up.
When I saw that Linda’s prompt for Stream of Consciousness Saturday this week was “up/down”, I knew that I needed to write a follow-up to last week’s SoCS in which I talked about my father (Paco) and his recent fall, hospitalization, and move to a rehab facility.
When I wrote last Saturday, it seemed that, though there was a long way to go, things were trending up.
Everything changed on Sunday when new complications arose. For various reasons, I will not even attempt to elaborate.
Let’s just say it has been a very “down” week.
We are working hard at untangling a mass of symptoms and trying to keep him safe and comfortable, but it’s an uphill battle. I know he is 96 and so, very vulnerable and prone to complicating factors but it is still so hard to deal with.
And to watch.
I know intellectually that I am doing all that is possible for me to help him and his care team, but my heart aches because I can’t make it better.
We have no idea what the outcome will be. It’s not just one day at a time, which is Paco’s favorite saying. It’s one hour at a time. One moment. One more early morning phone call telling me that he fell again during the night.
There are up moments here and there. When Paco easily remembers my name. When he gets to enjoy a slice of blueberry pie for dessert at lunch. When he manages to make a little joke with his aides.
I had planned to go to vigil mass today at a friend’s church, but was too tired to make the drive, so I went to a nearby church instead. I was blessed to see Sister A. there. She had been one of the stalwart visitors during my mother’s final illness, a span that stretched over two years. Because of the pandemic and other circumstances, I had not seen her in months. I was able to fill her in on Paco’s condition and she assured me that she has been lifting him up in prayer.
After such a “down” week, that assurance was a much-needed balm.
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.
One of the changes with the rules in New York State and with my father’s assisted living home is that I can now sign him out and take him for a drive. Previously, I could only take him to medical appointments.
My father, who is known here as Paco, loved to drive. He drove quite a bit when he worked for New England Power Company for 43 years and, given that our town was twenty miles from a grocery store, other stores, our grandparents and other relatives, the movie theater, and just about anything else that wasn’t work-related, he drove quite a bit on evenings and weekends, too. (My mom also drove, especially taking us to piano lessons and my sister’s dance lessons, but, if the five of us were going somewhere together, Paco always drove.)
In those days, it wasn’t unusual to “go for a drive” as a form of recreation. Given that we lived in the Massachusetts/Vermont border area, there was beautiful scenery in any direction you chose to drive. And hills. And what to us was normal but in retrospect were narrow, winding, and largely unmarked roads. It didn’t matter. Paco was used to it and was a very good driver with a very good sense of direction.
Paco had said that he would stop driving when he turned 90. That turned out to be not quite true. I think he stopped when he was 92. By then, my mother was entering her final battle with congestive heart failure and Paco was staying with her in their apartment nearly all the time. Their senior community offered transportation for the occasional trip to the grocery store or for medical appointments and I was nearby and there every day and could drive for errands or deliver things to them. They decided to sell their car and Paco replaced his driver’s license with an official state ID.
The IDs have a longer renewal term than driver’s licenses do, so his current ID is good until he is 103. He’s currently 96. He says he doesn’t think he will make it to 100.
Paco is famous among family for always saying “One day at a time.”
I grew up in a rural area where television was purely by antenna, although we received NBC, ABC, and CBS, the three major networks at the time, which was a luxury. I’ve never been able to keep up with the increasingly complicated media landscape of cable, premium channels, satellite, and streaming options. I’ve gotten used to reading lists of Emmy nominees of shows I have never seen and to which I don’t have access. I usually can’t even keep track of what show or movie is being offered on which platform.
I do occasionally happen upon a recommendation that I can follow through on viewing. I was reading a list of awards geared for older adults from AARP which included the 2020 documentary A Secret Love. It is available through Netflix, the one streaming service to which we are currently subscribed, so spouse B, daughter T, and I settled in one evening to watch it.
A Secret Love is the story of Pat Henschel and Terry Donohue, two Canadian women who fell in love and made a life together in the United States where Terry had played baseball with the Peoria Redwings of the All-American Girls Professional Baseball League. While family back in Canada knew the two were close friends who shared a home, they did not know that they were life partners for many decades. While the film does give us their remarkable personal history, the documentary concentrates on their later years, as they face Pat’s illness and decisions about where to live.
Having dealt with the issues of serious illness, financial and legal complications, and housing decisions with B and my parents, I found much of what Pat and Terry were facing relatable. The complexity of the family dynamic, the cross-border legal issues, and the fact that, while Pat and Terry had been a couple since 1947, they did not have the protection of marriage when it came to things like hospital visitation added even more poignancy to an already daunting situation.
What comes through most clearly, though, is the depth of their love for one another. I am always moved by couples whose bond is so strong that it weathers decades of life together and Pat and Terry’s story is such a beautiful example of that. I will warn you that if you, like me, are inclined to teariness, you may want to have your handkerchief handy.
I will also say that, while the story is about elders, it also holds meaning for younger adults. T loved the film as much as I.