SOLACE: Soul + Grief

Grief in Real Time: Dying in Hospice

Candee Lucas Season 3 Episode 26

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This episode offers a very personal glimpse into the heartbreak and resilience involved in navigating end-of-life care, especially with a family member who once was a vibrant and influential figure.  I hope to bring solace and understanding to anyone facing similar heart-wrenching decisions, as well as honoring the unbreakable bonds that sustain us through such challenging times.

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Candee:

My father is dying. He's dying in hospice right now, 2,000 miles away, and I wanted to share this story with you in real time, on the off chance that it gives someone solace. I've been involved in hospice work since 2010, and I was very anxious for my father to receive hospice care as his health grew more and more fragile. However, the family had to make a difficult decision about six months ago when his heart seemed to be failing slowly. He was 94 years old at the time and had difficulty with physical movement, and they determined that there was an oxygen deficiency as it reached his brain. His medical team suggested he have a pacemaker implanted, but the purpose of that pacemaker would be to improve the blood flow to his brain. Now I knew from previous experience that, even though people say it's not true, a pacemaker seems to extend the life of patients who have them, because, of course, once they're in place, no doctor is going to be willing to turn it off, as it were. They will assure you that it doesn't interfere with the natural death, but I just don't believe it, from personal observation of patients of mine who've died with pacemakers in place. Yes, they eventually stop. But it all seems to have gone on too long and that is my experience right now, six months after my father had a pacemaker. At the time he was beginning to show signs of dementia and during the operation and after the operation, although his oxygen levels improved and he had a healthier glow about him from more blood circulating, it did nothing to affect the inevitable decline.

Candee:

My father was a college professor. He taught nurses anatomy and histology. He taught undergraduates biology 101. He was interested in Siamese fighting fish, did his doctorate degree on genetics of those fish on genetics of those fish and was well known in the community and it gave him a lot of recognition throughout the years and a lot of pleasure. He's written books about them, given lectures and talks all over the world, studied them in Vietnam and Thailand. But that person is not the one who sits in hospice today. The man who once weighed around 250 pounds now is down to 125. He's bedridden most days, doesn't have the ability to recognize my sister anymore who lives nearby and visits him often.

Candee:

Initially I thought it was very important for me to be with him when he died, when he took his last breath. But the last time I was called home when he had to be hospitalized, it became apparent that he was losing parts of himself, much like the iceberg breaking apart. Parts of his mind are intact over here, floating over here, but they're not connected to other parts, and another part of the iceberg has broken off and floats over here, but it is even less connected. That part has been the most difficult for me, and I don't know what year it was, what month it was, what day it was that he stopped being my father. I don't mean in the biological or genetic sense, I mean that father that you look up to for guidance and strength, for in many of my adult years he provided that for me when my marriage was falling apart, when I was having difficulty with my studies in law school or my studies at Santa Clara. He always understood my quest for knowledge, as it were, and encouraged me.

Candee:

But now I don't know if he remembers my mother, who died nearly 30 years ago. I don't know if he remembers anything of our family life, because in days when he likes to leave the memory care facility where he's being cared for, he likes to spend those days sitting outside the house he grew up in as a little boy. So as he loses more and more and more of himself, each loss is a new grief for me and my sisters. His second wife, Jean, who cares for him now. The two of us tried to take care of him at home for a month earlier this year, before we made the difficult decision to put him in a facility, and the two of us were unable to do it. And as he became more physically frail and more mentally fragmented, there was less and less an ability to reason with him, persuade him, and now he is angry and lost in his own specific memory. So I've talked to my sisters and I've told them it's no longer that important for me to be with him as he dies.

Candee:

He has no religious beliefs, no specific religious beliefs, but Jean feels very specifically that there should be no religious ideas, thoughts, prayers around him. I pray for him here, but I don't think, even if I was in the room with him, that he would understand the source in those prayers. He has a POLST, he has a DNR, but we are seeing him slowly, inexorably die. The hospice nurse tells us his vitals are strong. I'm sure they are, but all those doctors have achieved is extending the very worst part of his life. I know he would agree if he could formulate that idea and communicate it to somebody.

Candee:

I hate. I hate to see him so small His stature, but I hate that his wonderful mind that I love so much, that encouraged me all my life long, has fragmented so badly. There were times when I was caring for him over the winter that he seemed to recognize this. He seemed to recognize the fragmentation and sometimes we tried to make a joke of it. But it's not a joke anymore. It's just this wonderful man whose was distanced from us, never really relating to his girl children, the only kind he had. But when you could meet him on his own he was fascinating.

Candee:

At one point in time, when my mother was dying and I had gone back and was living with them, we would take long car trips to either take her somewhere or visiting something and have wonderful conversations just about life, not about anything in particular. He never understood my conversion. I was never able to quite explain it to him. That makes me sad too, because I know he could have and will find comfort and the end of his life with God, although he might not recognize it as such. I miss you, dad, and you're still with us. That concludes another episode. Please support us by subscribing on Spotify, Amazon Music, Apple Podcasts. We always welcome your comments and feedback. Remember, spiritual Direction is always available through Catholic Cemeteries. I'm Candee Lucas, chaplain, aftercare coordinator and spiritual director at Catholic Cemeteries. You can reach us through the email or telephone number in the show notes. Be gentle with yourselves. Travel safely with God. Vaya con Dios.

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