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.

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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/

 

 

 

Linda!

Sending out best wishes to Linda, who brings all of us together for One-Liner Wednesday, Stream of Consciousness Saturday, and Just Jot It January and delights and entertains us with her other blog posts, fiction, and books! She had a bit of a health scare earlier in the week but was able to get to prompt care, thanks to the Canadian health care system.

She is doing better, although dealing with some of the aftermath and waiting for test results to determine if further treatment is required. Let’s all send out good thoughts, prayers, and/or positive energy to Linda, who is intrepidly continuing with Just Jot It January in the midst of it all!
*****
Join us for Linda’s Just Jot It January! Find out more here:
https://lindaghill.com/2018/01/19/jusjojan-daily-prompt-january-19th-2018/

 

“Cause of [Erica’s] Death” by Mariam Williams

Today, I would like to share a link to a poem from a writer whom I follow, Mariam Williams. It is about Erica Gardner, daughter of Eric Gardner who was killed by police, launching her into activism. Blog post and poem here:
https://www.mariamwilliams.com/2017/12/31/cause-of-ericas-death/
Mariam’s writing is always thoughtful and meaningful. I hope some of you will be inspired to explore her webiste and read more of her work.
*****
This post is part of Linda’s Just Jot It January. Join us! Find out more here:
https://lindaghill.com/2018/01/02/jusjojan-daily-prompt-january-2nd-2018/

 

health update

I wanted to give you an update on Nana and Baby ABC.

On Friday, Nana was accepted into hospice care. I now that some people are used to thinking of hospice as a last-days-of-life service, but it is really designed to be an integrated care program over the course of what is expected to be a final illness. It is meant to keep the patient comfortable and as engaged as possible for as long as possible, while also helping the family caregivers.

Nana will have regular visits from a nurse/case-manager, personal care aides, and chaplain. A social worker will be available to help with paperwork and recommendations as needed. A volunteer will arrive to keep Nana company while Paco goes off on his weekly trip to Wegman’s grocery store on the bus from their senior living community. More services can be brought in as needed.

In addition to hospice, we have aides coming in at night to assist Nana to keep her safe and so that Paco – and the rest of the family – can sleep without worrying about her.

Nana has improved over the last few days. It turned out that her oxygen machine that she uses when she sleeps was malfunctioning. Now that it has been replaced with a new unit, she is able to sleep longer and better so that she can have more quality time during the day.

Meanwhile, ABC is two and a half weeks old and doing well. She initially had a bit of jaundice, which is not uncommon in babies, especially those who, like her, arrived a bit ahead of schedule. She had light therapy at home which, along with time, took care of it. At her two-week checkup, her weight was a bit above her birth weight and she is now having a growth spurt and nursing frequently.

It is a joy to watch E and L who are wonderful parents, despite being so new to it. B and I love to snuggle and rock our granddaughter and are finding that our long-unused infant-care skills have reappeared readily.

We especially love being able to take ABC to visit Nana and Paco, who love every moment with their great-grandchild, even though she is often napping during visits.

We expect to see a bit more of her (currently) deep blue eyes in the coming weeks.

Low/high

When I wrote this post in the wee hours of Monday morning, I had no idea what new highs and lows the next twenty-four hours would bring…

At 9:00 AM, Nana and I met with her primary care physician, Dr. T. What began as a discussion of her recent symptoms that had prompted us to be there quickly segued into a discussion of how her numerous health conditions and our treatment plan were not succeeding as we had all hoped, how the trajectory while there were ups and downs was trending downward, and how we needed to discuss and prepare for end-of-life planning.

I cried.

As I am sure you can imagine, or, perhaps, know from your own experience, the discussion was painful and emotional, but I am grateful for Dr. T’s honesty, care, and concern that made it possible for us to consider our options and get the help that Nana and all of us need. Barring a sudden event like a stroke, we are likely to have some unknown number of months with Nana, which we want to make as comfortable and peaceful as possible, as filled with family and friends as her strength allows.

We are starting with getting home care recommenced, but the new goal will be to have therapists and aides to help care for her so that she can conserve energy for fun things, instead of wasting it on mundane things. For example, while a goal of her physical therapy had been to be able to walk down to the dining room at their retirement community for dinner, a new goal will be to get a wheelchair so she can ride to the dining room and have energy to eat and visit with friends.

We expect that there will continue to be some days that are better than others, but we hope to have enough support to keep Nana at home in the apartment she shares with Paco. They have been married for 63 years and belong together!

I spent much of Monday afternoon communicating with family members that needed to know what was going on and wrapping my head around our next steps. E and L took over dinner preparations and we settled in for an evening together watching television. E wanted to watch the Stanley Cup (ice hockey) game and was ensconced on the couch with L, when, a bit before 8:00 PM, she startled all of us with the news that her water had broken.

In short order, there was a call to the obstetrician’s office, the message saying to head to the hospital, the hurried assembling of some supplies, and the four of us driving off to the hospital where we arrived at about 8:30.

E and L headed into the delivery suite while B and I set up in the waiting room, thinking that, given that E had not been having noticeable contractions, they might send us home while she rested for the night and waited for labor to begin in earnest. The reason we thought this might be the scenario is that, when I was pregnant with E, my water broke at 36.5 weeks and it took 26 hours for her to arrive.

And E was also at 36.5 weeks.

This was a different labor-and-delivery story.

Baby arrived before 1:00 AM Tuesday, on the sixth of the month.

E was also born on the sixth of the month.

Baby weighed five pounds, five ounces (2.4 kg) and was eighteen inches (46 cm) long.

E was born at that exact weight and length.

Baby has a full head of hair, as did E, although E was strawberry blond (later changing to golden blond) and Baby has dark hair, like L’s.

E and L named their new daughter Ada. Henceforth, I will likely refer to her here on the blog as ABC, which are her initials, but I did want to share her lovely name with you in honor of her birth.

B and I got to share a little time with the new little family before heading home to catch a few winks before the sun rose. We each got to hold our precious first grandchild and reflect on the parallels between E and little Ada.

One more: Ada, like E, is the first grandchild on both sides of the family.

L was able to stay at the hospital with E and ABC until they came home on Wednesday. On Thursday, they went up to meet Nana and Paco.

Nana and Ada 6/8/17
(Great) Nana and Ada meet for the first time

Maybe Ada was in a hurry to arrive so that she could meet Nana as soon as possible.

I’m sure she will bring us all much-needed joy in the coming months.

Anyone?

[sidles in, switches on the lights, and looks around]
Hello? Anyone still here?

Oh, good! A few of you are still checking in! My apologies for the dearth of posts lately, with just a scattering here and there.

Life has been busy and I wanted to do updates. The most important is regarding my mom, known here as Nana. She spent several days in the hospital last month with pneumonia/congestive heart failure and was sent home to the apartment she shares with my dad, Paco. She was very fatigued and weak, so we have enlisted help. She now has home care coming in several times a week for monitoring and physical therapy. There have been doctor visits, a new medication regimen, and some more tests ordered.

It’s great to have home care in, because it means having a nurse case-manager to oversee and co-ordinate the various health-care providers involved and to serve as the one-phone-call resource for questions and problems. This is especially important for us this week, as B and I leave tomorrow to visit daughter T in Missouri. It brings peace of mind to know that the home care team and the staff at their retirement community are both on duty to watch out for Nana and Paco while we are gone.

I’m hoping that I will have time while we are gone to do some catch-up posts. Music, poetry, travel, and transportation will be likely topics.

Stay tuned.