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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SoCS: the reason for yawns this week

I have been yawning more than usual this past week.

Last Saturday night, daughter E was lying beside granddaughter ABC, reading her a bedtime story. ABC was having a drink of water from her covered tumbler and, in her excitement, hit her mom in the eye with the bottom of the tumbler.

E called for me and I rang into the room. Her eye was already swelling, so I got her an ice pack and calmed ABC down and got her to sleep.

E had been hit hard enough to see stars and lose her vision in that eye for a moment, so we weren’t surprised when she had a headache the next day. And the next. But then, she started to feel dizzy a lot and get nauseous. I was afraid she had a concussion, so we went into the doctors’ office. It turns out that the symptoms of concussion are very similar to the symptoms of bleeding in the orbital socket, which has a lot of nerves that are very sensitive.

The treatment is also similar to concussion: rest, quiet, avoiding activity and eye strain and loud noises, taking pain relievers, not lifting heavy things.

None of which is inherently easy with a toddler in the house.

It turned into everyone else in the house taking over as much of ABC’s care as possible.

Which brings us to yawning. I have been taking over the nighttime care, sleeping on the couch on the first floor rather than in my room on the second floor. ABC is a pretty restless sleeper, so I would go into her several times a night to cover her or sing her a song or read her a book to get her back to sleep. When my husband B would come down between 5:00 and 6:00, I would sneak back upstairs for another couple hours of sleep, but I admit that I have been tired and, thus, yawning a fair amount during the day.

Last night, ABC didn’t wake up at all, so I got to sleep for a long stretch myself, which was nice and resulted in much less yawning today.

Let’s hope it is the beginning of a trend.

(By the way, E is improving, so there is some hope that she will be able to be more active soon.)
*****
Linda’s prompt for Stream of Consciousness Saturday this week was to write about the first thing we thought of after reading the word “yawn.” Join us! Find out how here:  https://lindaghill.com/2019/02/15/the-friday-reminder-and-prompt-for-socs-feb-16-19/

Holy Innocents

On December 28th, the Catholic Church commemorates the Holy Innocents, the very young children who were killed by order of King Herod in an attempt to eliminate the threat posed by the birth of Jesus.

Today in the United States, I am mourning the death of two children who fled here with a parent, seeking safety and protection, but who died while detained by Customs and Border Protection.

The government is trying to blame the parents for bringing their children here, but these people were living in desperation and danger in Guatemala. They would not have risked coming to the United States if there had been any safe option in their home country. International and domestic law, as well as human decency, call on us to protect the vulnerable; the current administration has failed miserably and, when challenged in court and among the citizenry, has said that it will fix things, but then declared a new policy that violates those same laws in a slightly different way. (And for those who are grumbling that those seeking asylum need to enter the country through legal ports of entry, both US and international law recognize the right to ask for asylum without regard to means of entry. Also, the current administration has made it nearly impossible to enter through the legal ports of entry, which further endangers the already vulnerable.)

I am also remembering the many thousands of children and teens who have been separated from their families and placed in custody. While I am grateful that some have been reunited with family, others are still in detention. All of these children and young people will have life-long scars from the trauma of separation, sometimes without even having access to someone who speaks their language. Somehow, the US government assumes that all Central and South Americans speak Spanish, but many of the current asylum speakers come from remote areas where they speak an indigenous language, not Spanish. Imagine how terrifying it is to be separated from your family in a strange place where you can’t understand anything that is said to you.

I am grateful for the many volunteers who have come forward to help the migrants, offering material and legal aid, and for the millions who give to organizations that are helping to support these people and battle in court on their behalf.

There are also many people and organizations trying to get legal solutions in place. Several years ago, the Senate passed a comprehensive immigration reform bill; although the House would likely have passed it as well, the Republican leadership would not put it up for a vote. Perhaps, with Democrats set to take over the majority in the House in January, there can be comprehensive immigration reform passed by both houses of Congress. Admittedly, it might have to pass by large margins, in case the president vetoes it, but I’m hoping that at least some reforms can be put in place.

The current situation must be resolved in a caring and positive way. I pray for strength, wisdom, and perseverance in this struggle for human dignity and decency.

 

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/

 

 

 

a move for Nana

On May 4th, my mom, known here at TJCM as Nana, moved to Mercy House, a residence for people under the care of our local hospice. She had been under the care of hospice since last summer, staying with Paco in their independent living apartment with the help of family and aides, first for overnight and later during the day as well. As her symptoms from congestive heart failure worsened and she became weaker, the care needed to keep her safe and comfortable was outstripping what home aides are legally allowed to provide, so, when space became available at Mercy House, we chose to make the move.

Of course, there has been an adjustment period with new caregivers and routines and food, but things are settling in now. The staff all share a calling and commitment to this work, as do the many, many volunteers who make Mercy House such a peaceful, loving place.

My younger sister was here for the first week, helping Nana to settle in and staying overnight with Paco at the apartment. As it happened, on the one week mark at Mercy House, granddaughter S finished her semester at college and came to visit. She used her dorm room decorating skills to hang pictures for Nana and my sister, her husband, and S had an early Mother’s Day/Nana’s birthday lunch brought in from a favorite restaurant.

from Nana's room in Mercy House
part of Nana’s wall decorations

This second week, someone from my house has been staying overnight and we are developing a rhythm to our days. Nana and Paco each do their early morning routine in their places of residence and then, mid-morning, we bring Paco to Mercy House for the day. Like hospice, Mercy House’s mission reaches beyond care of the individual to care of the family, so the volunteers and staff help Paco, too. There is always food available in the common room and Nana and Paco eat supper together at the dining room table, which is special after so many months of eating on a tray table in the apartment living room.

At the moment, Nana is the only resident who is able to be that mobile, so Nana and Paco usually have the dining table to themselves, but it also means that we were able to have two dinners this week that my spouse B, daughter T, and I shared, too. On Monday, we brought Swedish meatballs, made with the recipe that Nana used which had come to her from her Swedish landlady 55 years ago, for a belated Mother’s Day dinner. Last night, we brought in Italian food and an apple-blackberry pie that B had baked to celebrate Nana’s 86th birthday. The volunteers had decorated the table with a centerpiece, special napkins, and a birthday hat for Nana!
Nana with birthday hat

Next week, my older sister will arrive for a week. We are all grateful to have so much love and support surrounding us.

Thank you also, dear readers, for the thoughts and prayers that you have been sending and for your patience with my increasingly haphazard postings. I truly appreciate your visits and comments here.