And I’m okay with that
Many things have transpired with my parents since I last posted about them. Whether you will think they’re good things or bad is up to you. To me, it’s complicated. I prefer to think of it as more milestones in the trajectory of their lives, and ours.
There’s a lot to tell, so I’m going to break it into two posts. This one will be about Dad.
When recovery isn’t
Last year at this time it was Covid for both of them. They survived it. I would use the word “recovered” very loosely.
Upon Dad’s discharge from the care facility, we rented a hospital bed and a Hoyer lift. He’d become too weak to provide any help getting in or out of bed. (This was one of the effects of Covid that prompted me to get him into a skilled care situation in the first place.)
We tried, with partial success, to get him on a low-level “exercise” regimen when he came home. We’d have him stand for a few minutes every day. His caregiver and I would wheel him to one of the several grab bars we’d installed in the bathroom. We’d help him out of his wheelchair, counting to 20 or 30 as he held himself semi-upright, always clutching the grab-bar for dear life. We’d have him take a few steps to each side. I figured getting him to stand up and move a little bit would help to keep his lymphatic system working. It would prevent his muscles from seizing up during the many hours he otherwise spent in bed.
Often I’d notice how tired he seemed as we did our “stand-up” routine. He’d lean his head against the wall, rocking in time to our counts. More and more frequently, he’d keep his eyes closed throughout the whole ordeal. After a few months, he began refusing to do his exercises. I tried bribing him with offers of ice cream or other treats, but eventually, those also failed. It was clear to me that it wasn’t worth it to fight him, or try to guilt him into it. I reminded myself that my self-appointed job was to keep him as happy, and comfortable, as I possibly could.
With his lack of mobility, though, the idea of getting him to and from medical appointments was overwhelming. We’d built an access ramp in the garage, and we could Hoyer lift him into the car. Getting him out of the car at the destination was just too much, though, even for two people.
Next stop: in-home palliative care
I spoke with Dad’s doctor and let him know we wanted palliative care. Dad had no interest in “getting better;” this was quite clear. If I couldn’t get him to medical appointments, I at least wanted medical eyes on him regularly. This would be a way to manage his comfort and flag and treat any issues that would cause unnecessary suffering.
I’ve found that this is a challenge with most primary care physicians, even with patients with essentially life-ending conditions. The doctors’ go-to “state” is to prolong life. They never seem to ask the questions that should really be asked as patients advance. Even with diagnoses that are clearly ultimately terminal, doctors seem to struggle with the reality of mortality.
Gratefully, after that frank conversation, the practice rallied to help me find a home nursing care agency who could help. With Covid raging and complicating everything, it took two months of phone calls and follow ups. Finally, the practice team found an agency that covered our area and seemed to have some availability in their schedules. Initially, the nurses would visit weekly.
He qualifies for hospice? Woo-freaking hoo!
This nursing care was in addition to the standing home caregivers we had been relying on for over two years. They provide all of my dad’s daily personal care, an increasingly heavy “lift” since his return home after Covid.
A few weeks into the nursing visits, I got a call from a social worker/care coordinator to introduce herself. She would be our contact for any questions or concerns regarding pretty much anything regarding their ongoing services. As we chatted, she expertly steered the conversation to Dad’s list of diagnosed conditions. She noted carefully that his condition made him eligible for hospice care if we were interested.
I know, because we talked extensively about it afterwards, that she was not accustomed to the enthusiastic response I provided. I was genuinely excited, and I knew my sister would be as well. Too many people, I fear, are not aware of the huge benefits of hospice, and that it’s often available far sooner than most people realize. I’m not going to use this post as a forum to enumerate those many benefits. Let me just say this if you are in the position to influence late-life care for a loved one. You are failing yourself and your loved one terribly if you if you dismiss hospice care as something only for “the very end.” My advice: ask about it. Do it. As soon as you can possibly get it.
The spiral is accelerating
The nurses now come in twice a week. That frequency will increase.
In the past few weeks, Dad’s become almost completely non-verbal. Even the smiles I used to be able to get out of him by making faces or jokes have disappeared. Only once in that time has a look of recognition crossed his face when I come in to check his pulse and blood oxygen level. He looks at me deadpan when I ask how he’s doing, warn him that my hands are freezing. It’s rare that he even nods or shakes his head in response to simple yes or no questions. He often doesn’t even seem to recognize my mother. They’ve been married for nearly 61 years.
Last month he could still tell the nurse his birthday. He showed interest in most of his (admittedly smaller) meals. Now he barely looks at the nurse when she asks him questions. His appetite has all but vanished. His decline is speaking volumes, even if he isn’t.
To complicate matters, his main caregiver seems to be having a hard time of it. This manifests in clashes with the nurses as they’re trying to gather key information: how much he’s communicating; whether he’s sleeping more; how much his eating or drinking has declined. She’s the only one who’s able to observe and articulate the details. My mother can’t; she can barely process what’s really going on. I’m not there 6 – 12 hours a day. She needs to speak for him, but she’s struggling, even fighting.
I need to ask her if she’s going to be able to handle this. If she can’t be present and supportive through the process of his death, we need to find someone who is.
The elephant in the room
I’m just gonna say it: we pretty much suck at death in our culture. We trick ourselves into thinking the most important thing is to stay young. To cheat death. To prolong life at all costs. We pretend that it isn’t going to happen, to us or to our loved ones. We’re afraid to talk about it. We fail to plan for it. And then, when the time comes, we’re left empty and angry and bereft, and. . . surprised! Often when dealing with a terminal condition, families keep trying to pretend it isn’t real. Or we fight it, and often each other, tooth and nail.*
In all of this, we only succeed in cheating ourselves and our loved ones out of a truly meaningful time of connection and discovery through the most enduring truth we all share. All of us are walking around with a terminal condition. It’s called life, and it’s going to end for all of us at some point. I will argue, strenuously, that in failing to embrace that reality, we limit our full potential for living. It’s like cohabitating with one big, huge lie. In speaking its name, in getting comfortable with it, we take away its power.
We’re fortunate beyond words that Dad did think about these things. He and Mom talked to us about their wishes. They planned for this. In so doing, they saved us insufferable heartache and indecision. They gave us the outlines of what they wanted so we could make the choices they need.
So yeah. My Dad doesn’t recognize me anymore. But I’m okay with that.
* I have to qualify this somewhat for the cases where an illness, such as cancer, hits someone young, or relatively so. For them, I say, fight, hard. And use the experience to embrace the certainty of death, to ensure you, or your loved one, can truly live.
So sorry you are going through this .I can relate ,having gone through all most all the points you made just last year .Your parents are truly blessed to have such a caring daughter .
Thank so much Dave!
Since you and I spoke we too are looking into hospice. So many benefits!!!
I’m so glad, Stacey!!
Thank you for sharing. Watching the dying process is terribly difficult and painful and to be there with love and care , like you and Pammy are is beautiful. Your parents may not be able to express their gratitude but through their careful planning, they’ve made the process more doable and bearable. Death is a natural part of life’s end and hospice is such a wonderful way to help the process. I’m glad your dad and you all now have that connection. You are fortunate.
Dear Marcia. If I were still teaching Thanatology (Death & Dying) I would certainly ask your permission to copy your post for all my students. You are insightful and correct on all counts: Too many physicians, and medical personnel in general, see dying and death as medical failure, not as part of our normal development.
Your selection of hospice was exactly the right decision. In fact, many patients who enter hospice benefit so greatly from the experience they are released (after 6 months in the U.S.) and may or may not return depending on further developments.
Your narrative presents you as a well prepared and well grounded person and I hope it reaches a wide audience. Marco
Thank you Marco – I would surely grant you that permission!! I’ll also be reproducing it on Medium, which will then exhaust my current “distribution reach!” It is a message I’m passionate about, and could be a future, more consistent focus for me as I have a few ideas around it knocking about in my head!
Thank you so much for this witness, Marcia. We totally suck at death! The more people notice it and talk about it, the more it changes. Thank you and your other commenters, too. I can feel us changing as I read this post and the comments you’ve received and responded to.
Thank you Marcia,
I am going through something very similar and it is great to hear someone else’s story and perspective. I completely agree with hospice, it can be a god send in assisting our parents through the last stage of life.
I love that you post this and want to continue to read about all your journeys. 🙂
You’re so welcome, Sarah. I’m so glad to know this is helpful – that’s my objective!!
Thank you for sharing your thoughts. Painful as they be, you are making the most of this experience. I went through the same with my mother who ended up spending 5 years in hospice before leaving us.
The best to you,
Oh Bob — 5 years is a long time. I’m sure hospice made it so much easier than it otherwise might have been. I’m glad you got something out of it. I just posted the “Mom” companion piece!