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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The wilds of October, so far

My Facebook page of Top of JC’s Mind is 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.

a rainbow at Mercy House

On Wednesday evening, I drove to Mercy House, the hospice residence where my mother lives, during a sun-shower after a heavy downpour. Given the time of day and the moisture in the air, I started to look for a rainbow. When I turned east, a full rainbow appeared before me, one end of it resting on Mercy House.

What I didn’t know at the time was that Phatar, a twelve-year-old who was also in residence at Mercy House, had become unresponsive and would pass away the following day, surrounded by the love of family, friends, and caregivers.

On Friday morning, the door to Phatar’s room was open, his bed made with the quilt pulled up. Near his pillow was a little memorial with a flower, the United States flag that had been on his door, a little poem that had been posted in his room, and his handprint in green paint on white canvas.

This morning at church, Father Clarence told Phatar’s story during the homily, about his cancer diagnosis, about his final months at Mercy House, about his desire to receive Jesus in the Eucharist and his baptism, and the comfort that brought him in his final weeks. There were smiles and tears as we listened.

Our mix of emotions in reacting to death is always complex, but I think most people have a particularly strong sense of sadness at the death of a child. It has also been sad watching Phatar’s mom these last months, suffering through every parent’s nightmare of the illness and death of their child. Still, I am grateful to have met Phatar and to know that he is now at peace.

The next time I see a rainbow, I will think of him.

SoCS: an unexpected call

[Warning for family: This post is about Nana’s hospice care. You may prefer not to read it.]

I got an unexpected call this week from my mom’s (Nana here at TJCM) hospice social worker. She wanted to set up a family meeting with her and the hospice nurse. It was a bit unusual to have a formal meeting time set up, but we agreed to meet in my mom’s room at Mercy House, the hospice residence where she moved in May. We were fortunate that my older sister was here visiting, so she was able to join in, too.

What I hadn’t suspected was that the meeting was about re-certification issues. In most hospices, acceptance means that life expectancy is six months or less. With some diagnoses, that determination is relatively clear, but, with heart failure, as my mom shows, it isn’t so clear.

Nana was re-certified at three months, at six months, and then every two months since. We are now at fourteen months. There have been lots of ups and downs, but, sadly but not unexpectedly, the overall direction has been one of decline with continuing weakness and fatigue that has worsened significantly over the course of this year.

Therefore, we were shocked that the social worker told us that the medical director was considering de-certifying Nana. I guess I shouldn’t have been shocked, as there had been a couple of other times that the medical director has questioned re-certification, but it seemed so clear that symptoms were worsening that I never thought there was a possibility that he would think Nana didn’t meet the criteria to remain in hospice care.

As I understand it, there are two basic issues. One is that the medical director only has access to data points collected during visits from the hospice personnel, perhaps two or three hours a week and always during the day. Second, the criteria to stay under hospice care have to do with rate of decline, so, even though Nana would easily qualify to enter hospice care in her current condition, it doesn’t necessarily follow that she would be re-certified to remain under hospice.

So, on hearing the news from the social worker, I freaked out a bit. Well, not outwardly. But losing hospice care at this point would be very complicated. In order to be in residence at Mercy House, one has to be under hospice care, so de-certification would have meant having to move Nana, which would be complicated and exhausting. We had a preliminary plan in place, but we hoped not to have to implement it.

What we could do was give the social worker more information of what we were seeing when we were there visiting, which covers about nine hours most days. Nana was also able to give us some more information about night-time issues.

The social worker took the additional information we were able to provide and the medical director was able to see how it fulfilled the criteria for Nana to be re-certified. We were very relieved. From now on, though, I will be more deliberate about noting changes in case we need to fill in the blanks again.

Through it all, we are grateful for the care hospice has been able to provide. If it were not for their expertise in managing symptoms, it is likely that we would already have lost Nana. As it is, we continue to have the hope of more time with her.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “call.” Join us! Find out how here:  https://lindaghill.com/2018/08/03/the-friday-reminder-and-prompt-for-socs-august-4-18/

 

 

 

father, farmer, and builder

This week, my daughters and I sang in the choir for the funeral of our friend Nancy’s dad. Nancy is a long-time church musician and liturgist, so many current and former choir members and friends arrived to support her by participating in the liturgy. We had 43 singers and 3 instrumentalists. The music was a beautiful and meaningful part of our prayers for Joe and being surrounded by so many musician-friends helped Nancy to play the funeral mass.

I know from personal experience how difficult it is to play for a loved one’s funeral or memorial. Because you have to concentrate on doing your job musically, some of the mourning that one would typically do at a funeral is deferred. My hope is that the memory of the music we shared will be a comfort to Nancy when she reflects on the funeral in the coming days.

The reflections offered centered around Joe’s roles in the community as a father of five children, a farmer in his younger years, and then a long-time builder of homes in our area. Each of these roles has many scriptural and faith references which were woven throughout the liturgy.

It was my privilege to write the universal prayer for the funeral. I served on the liturgy committee with Nancy for many years in our former parish and learned so much from her; I was honored that she asked me to write the petitionary prayer that closes the liturgy of the word.

Nancy and I have been supporting each other through an extended period of multi-generational family caretaking. Strangely, some of our most stressful periods have coincided. Fifteen years ago, I was staying at the hospital with one of my daughters when Joe had a serious stroke following heart surgery. I missed Nancy’s mom’s funeral when my mom had a heart attack while my dad was in the hospital for surgery. Now, Joe’s final illness and death happened while my mom is in a hospice residence.

I am truly thankful for Nancy’s support, friendship, and gracious example. I pray for solace and peace for Nancy and her family. Rest in peace, Joe.

flowers from Joe's funeral luncheon
Joe’s favorite color was blue, so there were blue hydrangeas and white roses on the tables at the funeral luncheon.

 

 

birthday sandwich

I did a One-Liner Wednesday post (with adorable picture) for ABC’s first birthday.

The next day, ABC and her mom, our daughter E, left London, where they had spent eleven weeks visiting dad/spouse L, his parents, sister, and extended family, to return to our home in upstate New York.

The following day was daughter T’s birthday which we celebrated at one of our favorite local restaurants. ABC charmed the staff and other patrons as we celebrated both birthdays.

ABC managed not to have a problem with the five hours’ worth of jet lag, although the trip was much more taxing on E.

We are settling back into being a household of five. T and B had taken charge of childproofing prior to ABC’s arrival and we have managed to avoid any major catastrophes so far.

One of the things that happened while E and ABC were in the UK was the move of my mom, known here as Nana, to Mercy House, a nearby hospice residence. Everyone loves ABC’s visits as she toddles down the hallways and around the common area and in and out of Nana’s room. She brings smiles to everyone and has made some new friends.

One of her new friends is a resident. He is only twelve years old. His presence here reminds all of us to treasure each day that we are given, that youth is not a guarantee of good health, and that the presence of family and friends and care of staff and volunteers can bring peace even in the most difficult circumstances.

 

organist update

I posted here about a disconcerting incident at the church in Northampton when the organist fell ill at the console during mass on the first weekend in March.

As luck would have it, I was again in Northampton three weeks later for Palm Sunday. There was a gentleman filling in at the piano and organ, so I knew that the regular organist, a woman named Jeanne, was not there.

After mass, I asked two parishioners who were handing out church bulletins for an update. They told me that Jeanne had been ill with bronchitis and on medications, but arrived at church to play anyway – without eating breakfast, as she planned to receive communion. The combination was too much, resulting in the collapse which we witnessed.

The doctors ordered rest for four weeks before returning to work, so I hope that Jeanne was back in the loft for Easter Sunday, leading the congregation from the organ, and feeling well again.

(I am continuing in to be in catch-up mode on posts. With luck, there will be a post about why I was in Northampton again coming soon. Also, the navigation and layout problems with my blog are persisting, with a month’s worth of posts not loading on the main Posts page. The posts are accessible by using the prior or next post links at the bottom of each individual post.)