Hospice for Dad

Another harrowing week. It’s frightening, that I can’t remember things from one day to the next. I’ve been so stressed out I can’t sleep, or even cry.

My Dad comes home today, on hospice, against the advice of his palliative care physician. That doctor felt he needed to stay at least until he got over having pneumonia, but once again, my father refuses to stay in the hospital. Every time he has an issue and is admitted, he agitates to be released the next day. He spends all his energy fighting against being there, which would seem to prevent him from getting well, thereby lengthening his stay. But he wouldn’t stay another day longer, and has for the past week stated that he would die right away if he stayed there. We somehow managed to convince him to stay 4 more days, which allowed him to receive IV antibiotics, but he refuses to stay long enough to finish the course and be stabilized.

Last week he refused hospice, believing he could et better and continue cancer treatment. Yesterday he decided he would go on hospice if that’s what it took to go home. If he could be stabilized, he could come home on palliative care management, which offers more services than hospice. It assumes one is continuing treatment. Hospice, however, is purely comfort care – no interventional care is offered. The difference is, he could go home right away, in whatever condition he’s in. This is what he chose. Despite his doctor’s admonitions that he would decline rapidly at home, his response was that he wanted to go home to die. I think he felt his chances of improving in the hospital were slim because he was so miserable; that the chances at home were at least equal due to better food and familiar surroundings. It’s very much the mind-body thing at this point, and if he died due to lack of advanced intervention, at least he would be home.

As difficult as this decision is on my Mom, me, and Hubs, I can’t argue with the desire to die peacefully at home. It’s true that there were moments when we thought he might not make it, but dying in the hospital, while logistically better for the family, is horribly demoralizing for the individual. I, of all people, know this, so I stoically support my Dad’s wishes, while lamenting the burden this places on my Mom. I do feel that in the end she might be glad he came home and she could spend the last days with him. But she’s tired and beat-up from my brother’s and my Dad’s protracted illnesses and is anxious about her ability to care for him on her own, especially if he becomes distressed.

I have chemo this morning. Hubs is going to help Mom with the discharge process, etc. The hospital is far from her home and she no longer drives the freeways. Fortunately my friend Tara can accompany me to chemo. Afterwards I think I’ll have to consider staying at my folks’ house to help out. It’s difficult, not having additional support, but then there are those who have no one at all…

I hope I can stay well long enough to see my Mom through this phase and into a time when she is free of so much turmoil. She’s been such a trooper, I don’t know how she does it. I can’t think of anything worthy enough to give her for Mother’s Day — a new lease on life? All she wants is for everyone to be well, I know, but since I can’t give her that…


5 thoughts on “Hospice for Dad

  1. I can’t believe the amount of stress that you must be under. I think I would be pulling the doona up and hibernating in bed! And I guess there are no right answers in terms of your dad. As you say, you support his wishes but are aware of the stress that this places on your mum.

    I hope there is a cloud somewhere with a silver lining for you.


    • Hi Gail,
      After this is over, I’m going to have a loooonnggg hibernation… somewhere not so hot. The silver lining is that I am well enough to support my mum a bit. I’ll have to live vicariously through you, the traveling queen! Pray, tell us about your last 18-day adventure through Budapest and Prague!

    • CS, I’ve read and re-read last emails from my friends who have died from LC, and our friends on GRACE, and of course everyone is too wrung out to bring too much detail into it. It’s private, of course, but darn it, I want to know! Did your father pass away with relative ease (and peace)? Hospice does help, but one still needs a squadron of hands to push, pull, bring food, keep things rolling. It’s so difficult with a mother who behaves like a martyr because her only help is a terminally ill daughter (and her husband who had to go on a business trip). Your Kensal Green poem has become something of a mantra now!

  2. Thank you for sharing your story. Sending you love and prayers for you and your family in this intense time. I was so grateful to be able to care for my daughter at home in hospice in the last 2 months of her life, and though it was a lot of work, I was blessed to have help from family and friends, and it was such a beautiful experience for everyone involved. So much love and so much grace…

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