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/

 

 

 

SoCS: back to normal

So, it has been a few days since I posted…

In other words, back to normal…

I had diligently posted every day for Just Jot It January and briefly considered continuing to post every day, but life intervened.

In other words, back to normal…

Or not. The word normal and my life do not belong in the same sentence.

Last week included a daughter coming down with a stomach bug, another daughter recovering from surgery to remove what we thought was a swollen lymph node but turned out to be a cyst, my spouse’s second cataract surgery, and an almost eight-month-old granddaughter that needed tending.

Sadly, last week also included the realization that we needed to upgrade the level of care for my mom, known here on Top of JC’s Mind as Nana. She has been under the care of hospice for seven months and is still in her apartment with my dad. She has had overnight aides, but we are now transitioning to daytime aides in addition. We have made some medication changes in hopes that she will have a bit of symptom relief from the increasing congestive heart failure. CHF is not a very predictable condition. There have been a number of dips with partial improvement following over the months, but you can never tell in the midst of a dip when or if improvement will come.

I know that people who read my blog frequently have been sending positive thoughts to Nana.  Thank you so much for your support.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “in other words.”  Join us! Find out how here:
https://lindaghill.com/2018/02/02/the-friday-reminder-and-prompt-for-socs-feb-3-18/

 

 

Nana and mocha

I apologize, dear readers, for my recent absence from Top of JC’s Mind. I’ve been trying wildly to catch up on what I missed being away for a week while dealing with an avalanche of current happenings. This post begins an effort to bring you up to date.

While Nana had a bit of an acute sickness just as I returned home, when that cleared, she regained a bit of her old energy, though, as expected with her level of heart problems, not enough to be out and about.

Still, it is heart-warming to speak to her on the phone and hear her sounding a bit like she did for decades when we used to talk every morning while I was on my treadmill and she on her stationary bike.

Her appetite has picked up, too. We are still keeping her supplied with lemon pizzelles, a favorite treat she enjoys daily. She has also been eating coffee ice cream on a regular basis.

On my first day back in North Adams, I went to Moulton’s Spectacle Shoppe to ask them to hang a poster for our poetry reading and to ask if they had any mocha sauce in the refrigerator. Yes, that seems like an odd thing to ask in an eyewear store, but the Moulton family is heir to the mocha sauce recipe that made Apothecary Hall’s soda fountain a regular destination for area folks. The Moulton’s used to sell the sauce in their general store on Main Street, but, since that closed, they have made a batch monthly and sold it at their eyeglass store – for those who knew to ask for it. They didn’t have any on hand, but agreed to make a batch in the next week so that I could pick some up before I had to leave town.

I was thrilled to be able to present my mom with mocha sauce for her coffee ice cream. She even sprinkles on chopped nuts, which was traditional for Apothecary Hall sundaes. Paco has been enjoying some mocha sundaes, too, although I think that Nana probably eats them a bit more often than he.

And, yes, I have written a poem about mocha sundaes, which I read when the Boiler House Poets gave their reading on October fourth.

There is a new poem drafted about this recent mocha experience, which I am hoping will make its way into the collection, which is waiting patiently in my google docs for a major re-organization.

She says, mentally eyeing her calendar…

 

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.

High/Low

Yesterday was Pentecost Sunday, which began with 8 AM Mass. I knew that daughter E would be cantoring, but found out on arrival that her spouse L was singing with her and that the handbell choir was ringing for the last time before their summer break. It was heartwarming and joyful to hear E and L sing together in public in the weeks before their first child arrives. Our friend music director Nancy said that she could feel L’s breath supporting E, although I think that even into her ninth month of pregnancy, E’s breath control is better than mine.

Unfortunately, the rest of the day was more subdued. We wound up needing to take Nana to the walk-in medical clinic and then to the emergency room for some tests. She had made some gains and started outpatient physical therapy instead of having in-home therapy, but, in the last week, she has gotten weaker and more fatigued. This morning, we have a follow-up appointment with her primary care physician.

Sometimes, it is two steps forward, one – or more – back.

Binghamton Poetry Project – Spring 2017

March was very hectic, but I did manage to attend four of five sessions for the Binghamton Poetry Project. Our reading took place on April first, but I missed it as it was the same afternoon as our University Chorus concert.

I haven’t had a chance to collect my anthology yet, but these three poems are my contribution. The first two were written from prompts during our sessions and the last one I wrote in response to the tongue-in-cheek suggestion of one of the Grapevine Group poets that we each write a snow poem after our big storm.

Enjoy! (And comment if you are so moved…)

Pneumonia

Her breaths are fast and shallow
between coughs.
I untie her sneakers,
work them off,
pull off her socks,
help her out of her shirt and pants,
slip her nightgown on.

She sits on the edge
of the bed,
pivots to lie down,
but needs me to lift
her feet.
I pull up the covers,
close the door,
and wait for the X-ray results.

*****

Two Hearts

Her cardiac rehab is Tuesday and Thursday mornings.

He rides with her in the retirement home van,
helps her navigate into the lift with her walker,
sits with her in the waiting room
until she is called into therapy
where he is not allowed to follow.

He waits.

Her exercises accomplished,
they board the van for the ride
back home to their apartment
where lunch awaits.

After sixty-two years of marriage,
he does not want her to go
alone.

*****

Nor’easter Numbers

The forecast was for an inch overnight
with Five to Eight to follow;
then, One to Three
with Six to Nine.

I rose before the daylight-saving
delayed dawn to find
a foot of snow already down,
consequence of a more westerly
track
plus
a stall.

My strategy,
born of long-ago New England winters,
to clear the overnight
accumulation from the driveway,
then shovel
every few inches,
add in the front walk
and path to the mailbox
as strength allows.

A good plan,
but overly ambitious
for a Five foot One-and-a-half inch
Fifty-six-year-old
alone
with a shovel
contending with the wake
of snowplows
and snow falling at Two
or Three
or Four
inches
an hour,
Twenty-seven inches
by Five o’clock
and still snowing.

Seven bouts of shoveling,
Twelve thousand, ninety-one Fitbit steps,
and Two blessed assists
from the neighbors’ snowblower
yield a driveway cleared to a road
under a county-wide travel ban,
a path to a mailbox that may
be filled with today’s mail
tomorrow,

weather permitting.