SoCS: blogging mode

A few days ago, I posted about going into a new blogging mode.

I shouldn’t have.

While I did manage one post in line with my new mode, a complication has arisen with Paco’s health. I’ve had very little sleep and no real idea of what today will bring.

This is where I would usually say something like “stay tuned” but I have no idea if it will be a few hours or a few days or longer before I have an opportunity to post again – about Paco or anything else.

I’ll be heading over to the nursing home as soon as we get to a reasonable hour – unless the phone rings before a reasonable hour arrives…

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Linda’s prompt for Stream of Consciousness Saturday this week is “ode or a one or two syllable word that rhymes with ode.” Join us! Find out more here: https://lindaghill.com/2021/08/20/the-friday-reminder-and-prompt-for-socs-aug-21-2021/

Paco update

Linda’s prompt for Stream of Consciousness Saturday last week was to base the post around a word that contained -igh. My thought was to write a post beginning with “Sigh” about my father’s continuing health struggles, following up on two previous SoCS posts.

The day after I wrote the post linked above, Paco’s condition deteriorated and I made the decision to send him to the emergency room. After the initial check-in, I was allowed to be with him. The ER team was very thorough and found that he was dehydrated and had three new fractures in his lumbar vertebrae. After some IV fluids, he went back to the rehab facility by ambulance at 3 AM.

I caught a nap and was very grateful to learn that my older sister had moved up a planned visit and would arrive that afternoon. She spent a lot of time with Paco on compassionate care visits while I worked out a lot of logistics. It turned out that a rehab room opened up within his senior community; the place where he currently was in rehab was a sister facility in a nearby city. Paco was set to move back on Friday and I spent a lot of time packing up things in his assisted living unit, some to send up to his rehab room there and some to bring back to our house as we had decided to give up his place in assisted, as we know he won’t be well enough to return there any time soon – and may never recover to that point.

The plan on Friday had been that our family would finish clearing out his place in assisted and help Paco to get settled into rehab, but we arrived to find that someone in the assisted wing had tested positive for COVID, so it had to go into lockdown. Fortunately, this didn’t affect Paco’s move and he arrived safely via medivan. I signed yet another cache of documents and was allowed a short visit to help him get settled.

Unfortunately, our hard-won rights to expanded compassionate care visits got lost in the bureaucracy with the impending holiday weekend adding another layer of complications with so many staff away on vacation. I was able to get permission for some extra visiting time over the weekend but face another round of changing personnel, location, rules, etc. this coming week.

Meanwhile, Paco is confused and exhausted. The silver lining is that his pain level is generally low.

The big question mark remains how much recovery is possible in regards to daily living functions. I don’t know if the rehab team will be able to make a valid prediction or not.

It may be a situation of wait and watch and work and hope and pray and see where we end up.

good news, bad news, and uncertainty

Yesterday, I got my second dose of the Pfizer/BioNTech coronavirus vaccine as part of their ongoing Phase III trial. As I have written about previously, spouse B, daughter T, and I are all participants but they both received the vaccine last August, while I was in the placebo group. After the vaccine received emergency use authorization, Pfizer unmasked the study so that placebo group folks could receive the vaccine as well, which I gladly did.

B and T both had a day after their second vaccination that they didn’t feel very well, so I planned today as a down day for me. I do have a sore arm, headache, some body aches, fatigue, and a low-grade fever, but ibuprofen and rest are helping somewhat. Only a small minority of people have this level of side effects, but I am more than willing to not feel well for a day in order to have as much protection as I can from the severe form of COVID-19. While the science is not yet clear if the vaccine prevents asymptomatic or mild disease, the data show that moderate and severe cases that lead to hospitalization and/or death are rare.

I am grateful that Paco was among the first at the Health Center in his senior residential facility to receive the vaccine. Two weeks from now, when I will be considered to have peak immunity, it will ease my mind when I am allowed to meet with him indoors to know we are both fully vaccinated. We will still need to wear our masks and keep some distance, but it will feel safer than it has over this past year.

More good news on the vaccine front is that Pfizer and Moderna have been able to ship more doses of their vaccines than they had previously and that the Biden administration has improved distribution in conjunction with the states and local pharmacies and health centers. Pfizer has applied for permission to store its vaccine at regular, rather than ultra-cold, freezer temperatures for up to two weeks, which will make distribution easier. Another positive development is that the Johnson & Johnson vaccine candidate may receive emergency use authorization as early as this weekend. It is a one-dose vaccine that can be stored in the refrigerator, which will make distribution in rural areas and neighborhoods without good transportation options much more effective.

The worry, though, is that more variants of the virus are appearing. Some of them are more easily transmitted and may cause more severe disease. It’s not clear how well some of the vaccines work against some of these variants. It’s also not always apparent which variants will become widespread. For example, a new variant has been identified in New York City, but no one knows if it will become dominant, cause greater sickness, or be prevented by the vaccine.

To combat this, both Pfizer and Moderna are looking at changing their mRNA vaccines to account for new variants, as well as studying if a third dose – or even an annual booster – might be necessary to tame the coronavirus and keep it at bay. It’s part of the reason that it is so important for the Phase III trials to continue collecting data, so we can keep immunity levels in the populations as high as possible.

For now, I’m resting, cuddled under a black fleece throw that the clinical research center gave me, with their name embroidered on it, of course. While study participants do receive a stipend, they also occasionally receive little gifts and it’s nice to have this throw to keep me warm today. The best thing, though, is knowing that the vaccines are helping people and that, despite the uncertainties, we are gaining ground in the battle to end the pandemic.

There is still a long way to go and I beg people to continue to wear masks, keep appropriate distance, wash their hands, and avoid large gatherings. Get whatever vaccine is available to you when it is your turn. Check on vulnerable people in your community to see if they need help to stay safe. Support efforts to get the vaccine to vulnerable people around the world.

It takes all of us working together to end the pandemic and rebuild our communities.

One-Liner Wednesday: community

It would seem that, quite possibly, the ultimate measure of health in any community might well reside in our ability to stand in awe at what folks have to carry rather than in judgment at how they carry it. 

Gregory Boyle

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2020/07/08/one-liner-wednesday-july-8th-that-feeling-when/

Badge by Laura @ riddlefromthemiddle.com

beverage of choice

I have been (perhaps inordinately) happy with my choice of milk lately.

Because the other adults in the house are all lactose intolerant, they drink Fairlife ultrafiltered milk, which has a good taste, unlike milks with lactase added, which I find too sweet.

However, when my doctor recommended that I increase my calcium intake, I decided that I would save the Fairlife for others in the house and choose a less expensive option for me. The problem is, though, that I don’t like to drink milk from the standard plastic jugs that are most common here in the US. It tends to taste a bit plastic-y to me, so I thought I could buy milk in cartons.

This was easier said than done.

It turns out that few milk producers use cartons anymore, but, at our local Wegman’s, I found another solution.
milk bottle

It is so much fun to have milk in a glass bottle, as it was usually distributed before they went to paper cartons. This dairy also vat pasteurizes their milk and even offers non-homogenized milk so that a layer of cream rises to the top of the bottle.

I have chosen to drink 2% milk, as a compromise between those who think one shouldn’t have dairy fat and those who think dairy fat is helpful to your diet.

A bonus is that the dairy is relatively closeby, about 120 miles from where I live, which is close enough to qualify as local in locavore terms.

Another bonus is that the bottles are returned and reused, cutting down on the waste stream or the processing needed to recycle.

The milk is delicious! It somehow seems colder when it is poured fresh from the fridge. Research shows that that is all in my head – or perhaps in my fingers as the difference in conductivity of a thick glass bottle versus a paper or plastic container is going to make the glass bottle feel colder. Glass is also good because it doesn’t transfer flavors into the milk as some plastics can.

I am drinking more milk than I was, which is helping my calcium intake go up. I am also taking supplemental vitamin D, knowing that light can degrade it, although, once I get the milk home, it is in the dark most of the time.

Unless that little light is not going off when the refrigerator door closes…

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/

 

 

 

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.