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.

Advertisements

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/

 

 

 

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.

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.

64th!

Today is my parents’ (Nana and Paco here at TJCM) sixty-fourth wedding anniversary.

And it is snowing, which is a bit odd for us here in the Northeast US on April 19th.

My parents married on this date for two reasons. It was Easter Monday during a time when Catholic weddings were prohibited during Lent. (While not currently prohibited, they are still discouraged.) It was also Patriots’ Day in Massachusetts where they lived, so it was a day off work for my dad and many other workers. They thought that they would always have their anniversary off work, which they did until the Monday holiday bill was created, moving holidays from their actual dates to a nearby Monday. (Patriots’ Day commemorates the battle of Lexington and Concord which began the Revolutionary War.)

Today’s celebration will be quiet.

[Three days pass.]

I started this post on the 19th. The plan was for me to spend most of the day at home until late afternoon when we would pick up dinner to bring to Nana and Paco. I was hoping to get this post out and do some other catching up and errands, but Paco wasn’t feeling well, so I went up to Nana and Paco’s apartment mid-morning to assess the situation and call the doctor’s office.

Later in the morning, Nana’s hospice volunteer visitor arrived. She brought a pink gerbera daisy with two blossoms as an anniversary gift from her and a gift bag from hospice with a bottle of sparkling apple juice, two glasses, a rose made of cloth, and an angel figurine. It was so sweet of her to visit and lift Nana’s spirits; we were sorry that Paco was napping and not well enough to be with her when she opened their gifts.

When I hadn’t heard back from the doctor by early afternoon, I called again and they decided to fit him into the afternoon schedule. I took him to the office, fortunately nearby to their senior living community, leaving Nana under the care of her aide.  The doctor made some medication changes and Nana and Paco both got afternoon naps.

My husband B and daughter T arrived at about five with food from a favorite local Italian restaurant. We set up their tray tables side by side on the couch with lasagna for Paco and bucatini for Nana. Nana and Paco got to enjoy their 64th anniversary dinner, topped off with sharing carrot cake for dessert.

They got to hold hands.

They reminisced about their honeymoon in New York City, seeing Bob Hope and the Rockettes at an 8 AM show.

And we had the privilege of being there.

I am grateful that they had this anniversary together, one more precious moment in their long life together. The precariousness of the day underscored that the much-discussed “quality time” is a gift that appears in our lives, sometimes planned and created, but more often appearing at an unexpected time or in an unforeseen way.  A cuddle from a toddler who is usually  too busy to stop her activity. An important discussion with a teenager during a routine car ride. A walk in the woods when troubles temporarily recede and clarity and peace return.

A time when holding hands means the world.

catching up – again

First, I would like to offer Passover and Easter blessings to those celebrating and sincere wishes for peace, love, and joy to all!

While regular readers might have thought I would have more time to post with daughter E and granddaughter ABC in the UK for an extended visit, and while I myself had hoped this might be possible, it hasn’t worked out that way, at least so far.

And, while I do try to write about the most salient things that are at the top of my mind, I am finding myself too overwhelmed to find words to express how I feel. Maybe, eventually, I’ll be able to. Perhaps in poetry. Perhaps years from now. Perhaps not.

In practical/physical terms, a large share of the last week has revolved around dealing with some changes in Nana’s condition. The edema from the congestive heart failure had accelerated but increasing the diuretics to address it lowered her already low blood pressure even more. We are trying to walk a very fine line to balance the two and, with her usual hospice nurse and aide unavailable for a few days, I have been trying to keep a closer eye on things and inform all the different private aides about the changes and new things we have to watch out for.

Amidst all this, it was wonderful to be able to celebrate Easter together. Daughter T and I attended Easter Vigil at church last night, which was a comforting blend of the familiar and the unique, with the once-a-year rituals of blessing the Paschal candle and welcoming new adult members to the church.

I had my pyx with me to carry the Eucharist to give to Nana today. T, Nana, and I prayed together before T gave communion to her grandmother.

We brought Easter dinner to share with Nana and Paco and Mary who is the Sunday daytime aide. My husband B made Swedish meatballs from a recipe that came to us through the Swedish landlady of my family when I was a toddler. For dessert, he made cherry pistachio biscotti and shortbreads, the latter from a recipe from his family. Not exactly traditional Easter foods, but delicious and special for us this year.

I wish there were a fast and easy way to get thoughts from my head into a post to send out to you all, but I’m afraid instead you will have to continue to put up with haphazard posts with various gaps that I may not even recognize in time to fill them. I hope to back up and write about a few things, like my second whirlwind trip to Northampton last month, as time and brainpower allow, but I know better than to make promises these days.