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.

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Sister Joanna

Yesterday, it was my privilege to join with the choirs of Holy Family to sing at the funeral mass for Sister Joanna. Sister Joanna had been most recently serving as director of social work and spiritual life at Mercy House, where my mother was in residence for five months before hospice discharged her. That was how I had met Sister Joanna, who often brought communion to my mother and coordinated such comfort measures as haircuts and massage therapy.

Sister Joanna’s death came as a shock. Although she had her share of health problems, she was only 69 and still very active between her work at Mercy House and caring for her own mother. Her loss will be keenly felt by all the volunteers and staff of Mercy House, as well as all the families and the staff of hospice.

The church was full for the funeral yesterday and included a whole row of priests who gathered around the altar for the Eucharistic Prayer. It was a beautiful service, but it is only the beginning of the good-byes to Sister Joanna. She was a member of the Missionary Sisters of the Sacred Heart and a vigil service and burial mass will be held in Reading, Pennsylvania, next week.

Rest in peace, Sister Joanna.

Four generation Thanksgiving

Thanksgiving four generations
a post-dinner four generation photo of me, Nana, daughter E, and granddaughter ABC

Today is Thanksgiving Day in the United States. We were able to bring Nana from the skilled nursing unit over to the dining room in the Village Center for Thanksgiving dinner, which was delicious.

For years, Nana had been the unofficial goodwill ambassador of the retirement community. She used to make the rounds of the tables after dinner, visiting with everyone and catching up on them and their families. After she went into hospice care in early summer 2017, she wasn’t able to be out and about. Now that she has been decertified by hospice and has done some rehab, she was strong enough to come over for an hour using a wheelchair outfitted with portable oxygen.

A number of people stopped by the table to say hello. There was lots of good food, conversation, and warmth, all of which counteracted the blustery day outside.

Last year at this time, I hadn’t thought it possible that we would have the privilege of another Thanksgiving with Nana and Paco. I am so grateful that we had this day together.

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.
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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/

 

 

 

strawberry pies

In my region, it is strawberry season. While strawberries from far away are available in supermarkets year-round, we almost never buy them, preferring to wait for the short but sweet local strawberry season.

When the wild strawberries in our lawn begin to ripen, it is time to head to the farmstands for quarts of flavorful, ripe berries. (It used to be time to head to the pick-your-own farms in the area but lack of time and an aging body have put an end to spending some early morning hours picking berries and avoiding slugs.)

In the early part of the season, I always make a fresh strawberry pie, using a recipe that my mom, known as Nana here at TJCM, made. It originated in a leaflet from the farm that we used to visit with her during childhood to pick strawberries. My copy was written out in Nana’s elegant cursive on a recipe card among those that she gifted to me when B and I married. We shared this year’s fresh strawberry pie topped with whipped cream with her and the family over at Mercy House, the hospice residence where Nana is now living.

As the season progresses and the berries need to be used more quickly, I move on to recipes that involve cooked berries. Last week, I made one of my favorites, strawberry rhubarb pie. I tried something different this time, using pastry cut-outs instead of a full top crust, hoping that the filling in the extra-deep pie plate would cook through without soaking the crust.
36427111_10212160706838382_6712770018037202944_n It worked! Again, the family gathered at Mercy House to enjoy pie with Nana and Paco.

Strawberry season is always a blessing, but this year even more so. Making more sweet memories is a precious gift.