JC’s Confessions #4

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.
~ JC

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.

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Nana's 87th birthday
Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Today is my mom’s 87th birthday.

Because her heart failure symptoms cause her to be sleepy a lot of the time, it is difficult to predict when she might be alert, so we keep celebrations ad hoc and catch bits of time with her as circumstances allow.

This morning, I picked her a few lilies of the valley from our (rapidly spreading out of control) patch. The original pips came from the yard of my childhood home in Massachusetts and from the yard of B’s home in Vermont, only a few miles apart. Lily of the valley is the birth flower for May and I have often picked some for Nana’s birthday. Our spring this year has been chilly and damp, so they have just begun to bloom with only the very bottom bells open, but I picked some regardless and will bring a few more when they open more fully.

On my way up to the skilled nursing unit of my parents’ senior living community, I swung by Wegman’s grocery store and picked up an individual size fruit tart. Nana would often buy large ones for special occasions, so I thought she might enjoy a little one for her birthday. I was pleased that, though small, there was a nice variety of fresh fruit over the custard, a large halved strawberry, a piece each of pineapple and kiwi, raspberries, blueberries, and blackberry. Nana was quite sleepy this morning, so I put it in the refrigerator with her name on it so she can enjoy it later today, or tomorrow or the next day, depending how she is feeling.

I brought her a card, too, which had bleeding hearts, which are also in bloom now, on the front. She has lots of cards from family and friends, including a packet of cards from people at her church.

A bit later in the morning, my daughters E and T and granddaughter ABC arrived. Despite ABC’s careening about the room, giggles, and squeals, Nana slept a good share of the time that she was there, but there were times that she was awake for kisses and a bit of lunch, some of which she generously shared with Ada. Her lunch tray arrived with a bonus, a large vanilla cupcake with white frosting and decorations. Nana decided to send it home with us instead of eating it herself. After all, she does have a fruit tart waiting for her, as well as some coffee ice cream sent over by a friend. When she is ready for one or the other of them, Paco will hop on his scooter and fetch them from the leisure room refrigerator. Of course, Paco got some kisses from ABC, too.

Both of my sisters called while I was there. My older sister just returned home from a few days of visiting and my younger sister and her family will arrive for a short visit this weekend. The main reason for the trip is my niece’s commencement ceremony in Cortland. She will be a newly minted teacher, with a job as a kindergarten teacher and a master’s program in New York City all lined up. Woo hoo!

B and I made another quick trip up for a visit in the evening, bringing another card that had inadvertently been left at home in the morning and some of Nana’s favorite toiletries.

We were grateful that we were able to celebrate Nana’s 87th birthday with her, or, as Paco says, the beginning of her 88th year. Last year, we celebrated her birthday at our local hospice residence. We didn’t think that we would be granted another whole year with Nana.

We all love that we have had this time with her.

hospice again

After posting every day in January, I haven’t been posting very much since. Unfortunately, my mom, known here as Nana, over the last few weeks has had increasing symptoms from her congestive heart failure. We have been able to ameliorate some of them, but she is sleeping more and eating less, having more trouble walking and getting short of breath more frequently.

Last week, Nana was approved to go back into hospice care. They will become part of her care team at the skilled nursing unit, so she won’t need to move again and so my dad can hop on his scooter and visit her whenever he likes. [Backstory is that Nana was under hospice care for fifteen months and then de-certified in October. She moved into skilled nursing at their continuing care community, as she could not stay at Mercy House, which is only for those in hospice care.]

We are hoping for as much pain-free and alert time as we can get in these coming weeks. Thank you for all the positive thoughts and prayers you have sent. They help us to stay grounded in this difficult time.

The wilds of October, so far

My Facebook page of Top of JC’s Mind┬áis helpfully reminding me that I haven’t posted in 13 days, and that post was a so-far-unsuccessful plea to get from 99 to 100 likes. My last actual blog post was on October 6, so – deep breath – here is an attempt to catch up a bit.

My mom, known here as Nana, has been under hospice care since summer of 2017 due to congestive heart failure. There have been quite a few ups and downs over that time – and quite a bit of red tape. Re-certification reviews are every two months, so, one finishes and it is time to start on data collection for the next.

As it happened, Nana’s current certification was due to expire on October 15. I was due to be out of town from the third through the ninth and thought that the re-certification decision had been deferred until the tenth; instead, the medical director decided on the fourth that Nana would no longer be covered by hospice as of the sixth. Hospice would continue to “follow” her until another suitable, safe situation could be arranged, but we were not given a date.

The situation was complicated by the fact that Nana had been in residence at Mercy House, which only houses people under the care of our local hospice, since May and could not return to her former home in an apartment with my dad, known here as Paco, at Good Shepherd Village (GSV) because her care needs were too great. Anticipating the possibility that Nana might be decertified, we had her on the waiting list for the skilled nursing unit at GSV for weeks, but they had no availability.

As soon as I returned home, it became obvious that we wouldn’t be able to wait for a room at GSV. On Wednesday, the 10th, my first day back, we were offered a room at GSV’s sister institution in the rehab unit, which we basically had to take.

I will not vex you with the details of the bureaucratic wrangling I needed to do to get the move accomplished by Friday. I will, however, say that I was disappointed that I was caught in the middle of so much red tape when so many people in the official-dom had been assuring me for weeks that transferring between institutions would be smooth and handled by the professionals rather than family.

Mom had her evaluations and was starting in with physical and occupational therapy, when, on the following Tuesday, we got word that space had opened up for her at GSV. So, we packed up her room and, on Wednesday morning, she moved again to what should be her permanent home.

We have her settled in her new room, which has a beautiful view of the valley. There are favorite art pieces, cards, and photos on display and a new sized-for-her recliner lift chair that we bought. She is making progress with her therapy and can walk short distances with a walker and a companion nearby.

I wish I could say that her heart function is improved, but that is not possible. Our goal remains to keep her as active as possible for as long as possible and to keep her pain-free. She is under palliative care protocol, similar to hospice but without the pesky obligation of trying to guess life expectancy.

The best aspect of her new home is that she and Paco are back under the same roof, albeit in separate wings. Paco can hop on his scooter and, using the turtle (3mph) rather than prohibited rabbit (5mph) setting, navigate the apartment building halls, Village Center, elevator, and Health Center halls, and be with Nana in just a few minutes. They have been married 64 and a half years, so the ease of being together is much appreciated.

We are trying to establish some new schedules and routines for Nana and Paco after so many changes in such a short time. If I am lucky, I will be able to work through my backlog and get back to writing and posting a bit more. I know better than to make promises, though. The last few years have taught me over and over to expect the unexpected and I think I may have finally learned that lesson.