four years

Today is the fourth anniversary of my mother’s death.

As often happens with these dates, sometimes it seems that it couldn’t have been that long and other times it seems longer ago. This warping of time is even more prominent because of the pandemic. I remain grateful that my mother died before we were all faced with the impossible prospect of not being able to visit her in the nursing home where she spent her final months. That would have been a particularly heavy burden for my father, with whom she had celebrated their 65th wedding anniversary a few weeks before she died.

This year feels especially poignant for me as I await the publication of my first chapbook of poetry, Hearts, from Kelsay Books, most likely in June or July. The poems center on my mother with a particular emphasis on her last years dealing with heart failure. She appreciated my writing and I think she would be pleased to know she is the focus of my first book.

She didn’t enjoy having her picture taken, so I will share a photo, taken four years ago in her final days, of one of her favorite flowers, lily-of-the-valley, which was also her birth flower.

Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Love you, Mom. Miss you. Still cry every once in a while…

final edits on a special day

Yesterday, the proof book for my chapbook, Hearts, arrived.

It’s amazing to hold my book for the first time!

My immediate job is to review it and send final edits to Kelsay. The corrections I had sent in the first round had all been addressed, so there was not much to comment on.

I sent the email today, on what would have been my mom’s 91st birthday.

She is the center of Hearts. ❤ ❤ ❤

One-Liner Wednesday: MLK quote

It may be true that the law cannot change the heart but it can restrain the heartless.

Rev. Dr. Martin Luther King, Jr.

Join us for Linda’s Just Jot It January and/or One-Liner Wednesdays! Find out more here: https://lindaghill.com/2022/01/19/one-liner-wednesday-jusjojan-the-19th-2022-voice-to-text/

One-Liner Wednesday: Peace

Before you speak of peace, you must first have it in your heart. 

Francis of Assisi

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2020/07/29/one-liner-wednesday-july-29th-ill-take-that/

Badge by Laura

Nana

I have often written posts about my parents, known here as Nana and Paco. I’m sad to tell you that Nana passed away last week. After months of declining health due to congestive heart failure, she had a few days of rapid decline and died peacefully with my older sister with her and the rest of the family able to gather quickly for some final time together with her.

Over these last few days, my sisters have been staying at Paco’s apartment and taking care of him, while my spouse B and I have been tending to preparations for the funeral, which will take place mid-week.

We are very fortunate that this week is a week off for my son-in-law L, who was able to fly here from London to be with daughter E, granddaughter ABC, and all of us.

I admit that my mind has been richoting from one subject to another. Now that the funeral plans are all in place, I’m hoping I can calm my mind a bit, but it remains to be seen.

With so much happening, I’m not online very much, so I may not be able to keep up with responding to comments. Please know that I appreciate all the thoughts and prayers that you send on behalf of Nana and our family.

In peace,
Joanne

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.

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.