Random Thoughts of a Disordered Mind


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It’s Been a Year

Bill Myers, Emerald Bay, 2012

Daddy died a year ago tomorrow. I’ve been marking the days this month of where we were a year ago – not crying, not anguished, just aware. I’m remembering how difficult his last month of life was, with diminished mobility and speech, increased confusion, and his confounded stubbornness that he was getting up even though his legs couldn’t hold him, that he was going home even though I couldn’t care for him here.

He ended his life in one of “those places” that he swore up and down he would never be in. When we explained to him that’s where he was, and that if he didn’t like it, he should have seen the places we didn’t take him, he wrinkled his face, saying, “Pffffffffft.” They took good care of him there, though the sight of the mattress around the bed in case he fell out in the night really threw me.

Daddy asked me in a window of lucidness where his grandparents were buried, and what did his will say, and was it finalized. He wanted to know things were in order, and he told me that it had been a good life and that dying wasn’t a bad thing. He went downhill from there.

Holding Daddy’s hand

I’m grateful to Hospice. Whenever I see Hospice nurses in blue scrubs out and about, I want to run up and hug them and say “Thank you.” Sometimes I do, which they may find odd, but especially now I have excess emotion and they made such a difference. They spoke gently but with blunt honesty about what happens to the body when it starts to shut down, about how our perception of it was just that; his body was doing the business of dying. That meant it was hot, that breathing changed, that he probably wouldn’t talk much. But that he wasn’t in pain and would at some level hear us even when he couldn’t respond. I sang “Amazing Grace” and “You Are My Sunshine” to him, and was with him when he died.

Today I spent time with someone in my community who is facing the same situation with a parent who probably doesn’t have a lot of time left. Because of my experience with Daddy, I was able to talk about convening a care coordination meeting with the facility staff, and bringing Hospice in early to help the transition, because Hospice staff bring additional skilled eyes to evaluate and support both patient and family. We also talked about cremation, and what services a funeral home provides, and how obituaries get to the paper. Things to get in order BEFORE there is a death, because so much happens then that it’s hard to keep track of details.

Daddy gave me that present of understanding this end of life stage, and the ability to talk about it calmly and with compassion. I miss him every day, though I don’t miss having the house climate be too hot for me or the TV volume up so loud I can hear it anywhere in the house. He was a kind man who loved his family with all his heart. People here speak so fondly of him that it sometimes brings tears to hear about random acts of kindness done that made a difference. That’s a pretty good legacy.

I’m holding on to the image that was on the prayer chain when he died, that “Bill is driving around the golden streets of heaven in a golfcart with his beloved Peg.” That’s Daddy. I love you, Daddy. And I miss you.

Bill, Anne, and Tom Myers
T-Bar-C Ranch, 2012


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52 Ancestors – #20 Medical Language

I had a plan for writing this week’s theme of Other Language. But then life intervened.

Maker:L,Date:2017-8-23,Ver:5,Lens:Kan03,Act:Kan02,E-veMy 90 year old father fell on May 1st and hit his head on a low brick retaining wall. It was a bloody mess. We went to the ER and he got staples to close the wound, fluids, and a CT scan which was negative. No one mentioned concussion and the list of things to watch for was, in retrospect, woefully limited. After a few days he was sleeping more, eating less, and having more verbal confusion. When we brought him in to get his staples out, the doctor  decided a brain MRI was in order to see if there was something going on to explain the changes we were seeing.

Last Saturday, Dad was able to drive his golf cart and had dinner at the club with my brother. Sunday he wasn’t feeling well. Monday, the day of the MRI, he was unable to stand and dress himself. The MRI showed a subdural hematoma, bleeding or fluids on the brain, pressing on the areas that control speech and motor functions.

So now we entered a new world of neurology. Terms like “confusion” that mean one thing to lay people mean something else to doctors. The hospital is crowded, busy, and really loud, the worst possible environment for elderly neuro patients. Surgery to drill a hole in his head to drain the fluid was quickly deemed unrealistic for Dad, given his age and condition. When a neurosurgeon says “no surgery” when their job is to operate, that says a lot. Not operating brings its own risks, as we have no idea what happens next. We don’t know if the bleeding will continue or subside and reabsorb on its own. It will be 6-8 weeks from the fall to assess the full long-term changes.

We scrambled to find a care facility in a matter of 30 hours. Thankfully my brother was here and we could do it together. The first place, while certainly competent, dropped my heart and my head screamed, “No, no, not that for my Dad.”  The doctors mentioned skilled nursing hospice – another word that threw us for a loop. I know about hospice, of course, but almost always in the context of life-ending cancer. I know hospice care happens at home, in a care facility, or in their own facility. But did that mean Daddy was dying?  What were we planning for?  Why weren’t they being more precise or at least explain? And why weren’t they saying the same things when we asked?

All the places we looked at have their own vocabulary that conforms with Medicare terms. No matter what, we were basically told Dad would transfer in as a rehab patient because Medicare pays everything for the first 100 days. How did this relate to “skilled nursing hospice”?  I don’t know. I got more confused with almost every person we talked to.

SerenityPrayerDad is indeed in a rehab section of a facility that offers levels of care including rehab, skilled nursing, and memory care – and he doesn’t want to be there. We don’t know how he will respond to rehab but any recovery is dependent on working hard. He hates being in “one of those places” and my heart hurts to see him there, lost and confused. We may have him for a short time or for years.

In a heartbeat, my life changed. After two and a half years as live-in caregiver, I need to find a new normal, and learn to just let go what I cannot change, which is pretty much everything relating to Dad. My nephew reminded me of the Serenity Prayer and the power of accepting things we cannot change, even if we don’t like them.

Please say a prayer for my daddy, for comfort and strength and patience. I need some, too.