Dad update #4

And the subtle theme of gratitude

I’m jumping the starter’s gun here two days in advance to give you an update on Dad’s Journey—the post for Friday that is evolving in draft form is becoming something much different than intended originally. Friday’s post is going to be in response to everyone’s reaction and response and outpouring of amazing love from the past three posts that have been written on Dad. Friday’s post is turning out to be an Eldering from Dad on dying wiser. I’m getting excited to share that with you but it needed to be separated from the more “clinical” update on Dad’s status.

This post is impactful too—and I’m sure there will be just as much an outpouring of sentiment.

So, in relative brevity:

The rally that we were so dumbfounded by, but joyfully welcoming of, did turn out to be “evanescent.” Last Saturday, we saw and felt a Dad who was reveling in family, relishing each moment, and thrilled to be the center of attention. I haven’t written much about this characteristic of Dad, but he can be QUITE the ham! Whereas in the past, when mom was alive, he was okay to hang in the background of things (because, again, mom took up so much of the room’s oxygen), now, he LOVES to be the focal point of the room. Saturday, once he woke more fully into the present moment, he was initiating good conversation, inquisitive of what was being talked about if he hadn’t caught it the first time, cognizant of everyone in the room, and requesting ice cream WAY too many times. Even attempting to gain confederates in that effort: “You ladies want ice cream now, right?” (His way of saying, “so when you go get yours, bring me some!”) And he was even chuckling at his own attempts at humor.

And then Saturday turned into Sunday.

The ebullient energy of Saturday’s rally ebbed just like an ebbing tide. But unlike the ocean’s trusted regularity and consistency, the ebbed energy hasn’t fully flowed back. If we’ve now settled into a new normal, a new benchmark of being, then Dad is physically thinner, has a drastically decreased appetite for food, has become more visually tired— which shows up through his constantly drooping eyes and further slumped posture—and is slurring his speech more. He is becoming more gaunt.

This is the body’s wisdom showing itself and guiding things now for Dad.

His hallucinations have intensified in their vividness and he’s living in that world more frequently while trying to get us to live in his reality right along with him. We’ve learned from Dementia experts that at this stage in a patient’s development, it is wiser to “connect” instead of “correct” those false perceptions. Correcting Dad wasn’t working—he was getting more anxious and upset when I would tell him “No, no Dad, there is no black bear out there on that tree and she’s not protecting her cub because there’s no cub there either.” Now, Kristin and I are making a fun go of it by playing right along, but in ways that won’t advance his stress. So now, “Yeah, wow Dad, I’m glad we’re in here right now and I’m glad Sammy’s not out there. I’m hoping those bears are actually in the neighbors tree—I think they are so we don’t have anything to worry about. But we’ll still be careful when we go out. Want some ice cream now?”

Keeping Dad calm is one of our top priorities. He IS pain-free and we’re hoping to keep him there. But I do worry about his anxiety especially if his lung capacity continues to decline. One physical ailment that is likely to intensify, and we’re already seeing it, is an ailment that often becomes a cause of death for patients like Dad: pneumonia. His aspirations are now happening with virtually every swallow of fluid or food. And even saliva.

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On Tuesday, I met virtually with Dad’s geriatric physician. Dr. T was able to have a visual on Dad who was non-responsive in that moment. The doctor agreed that Dad wasn’t doing well, and so has made a referral for in-home Hospice care. After an in-home assessment by an advance team of Hospice nurses, Dad will be placed in Hospice.

Breathing in…Dad will be placed in Hospice.

Breathing…Dad will be placed in Hospice.

Breathe…Dad will be placed in Hospice.

Those are six of the hardest words in the English language to say out loud. And I’m grateful for each one.

Hospice was originally founded in England in 1967; the first Hospice in the US was established in 1974. Hospice provides care and services for close to 2 million Americans (a woefully small number compared to those who would benefit but don’t get the care). Jimmy Carter being a patient now among them; and shortly, so will Dad.

Just because a person/patient has entered Hospice does not mean death is imminent, even though death is inevitable for all of us (a subtle distinction). That is a common misunderstanding of what Hospice care is under the umbrella of palliative medicine. What it does mean is that there is ample evidence to prove, with little doubt, that the patient is beyond cure and therefore in a place where medical professionals can and will support comfort and pain management. Hospice don’t do cure; they do do ease-of-suffering. And, they also do healing—just of a different kind.

For us now, Hospice caregivers will also serve one other VERY important role: when a patient dies in the home and is under Hospice care, it is they who will make the necessary calls for the family on their behalf. If a patient or any person for that matter dies in a home residence, planned for (like ours) or not but with no Hospice care in place, the family must call emergency personnel themselves and do the difficult work of talking with first responders which typically includes law enforcement officers who must arrive on site to insure no foul play has occurred. We were ready and prepared to do all that ourselves, but it is one of the major burdens taken off our shoulders now that Hospice is coming on board.

Hospice is not about dying, it’s about living—living with the highest quality of life possible. Hospice also is NOT a place but a concept—a concept of care for the patient and their family. Hospice can take place wherever the person needing the care resides. For Dad, Hospice will take place in our home for as long as possible in order to meet his wishes.

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Personal note because you may be tempted to ask or wonder how we, Dads family, are doing with this latest news. THAT’s what Friday’s post will be about because it’s not a simple answer. It IS a beautiful answer though. And it’s also an important Eldering from Dad. That’s why this post, and that post, needed to be separated.

[But the short answer is: we are all relieved. We are strong supporters and advocates of Hospice. I’ve been waiting for this moment, and now it’s here. More support is coming from Dad’s community; more resources become available to all of us. We welcome it all.

And Trevor, Clary, and Gloria have returned to our home—they’ll be staying a spell now.]

It snowed here yesterday. It’s still winter, in more ways than one. The time of year where the hop fields remain dormant, and where hop farmers grew restless. The time where one hop farmer in particular wanted to just do SOMETHING, but there was nothing to do. Nothing he could do, but wait. And that was not easy for him.

Just as some things are changing drastically, apparently some other things never change. 

Falling snow brings a unique silence to the landscape that resonates deeply with me. The flakes were large, they fell softly, and it was beautiful. 

Yesterday was a gentle and beautiful reminder that yes, we are still in winter here. Lots of different kinds of winter; in all their glorious darks and whites and greys. And winter IS beautiful.

When you look for it.

Love you all. 

Approach this day with reverence please. Today is the only day available to us—and as Dad is proving, each day is sacred; even as it wanes. 

Please push play.

Until Friday.

With love, always love,

🙏🏼

Kert

And with deep gratitude:

The bridge
from sorrow to joy
may seem to vanish
in the flood,
but who says you
can’t join those
who cross over,
with a single
braided rope
of gratitude.

~ Nadine Pinede