I appreciate all the comments and questions about my experiences with my mother in a residential hospice. Many good points have been brought up and I plan to share the excellent information and discussions with all.
A few points, although my mother was confused at the end, (week 7 -8) she was completely lucid at the beginning. That’s right her mind was sharp but her body was breaking down faster than we could fix it. Here’s a point where dementia would almost be a blessing. It’s simply cruel at the end to have a clear mind with a broken body.
When mom was in the hospital (before hospice), there was a conference call between all her doctors. She had health problems 2 pages long, but it was her congestive heart failure that topped the list. At a point, a heart simply gives out – it’s what happens when you get older. Hearts don’t beat forever. The docs had all unanimously decided that mom was near that point where her congestive heart failure would end her life. They offered residential hospice (because my mother lived alone and refused to go to anyone’s home.)
Mom actually wanted to go to hospice. She knew it was a well-run, beautiful and caring place.
“Does she know where’s she’s going?” asked the ambulance attendant as he helped transfer my mother from the hospital to hospice.
“Yes,” replied my brother. “She wants to go.”
“She wants to go? I’ve been in this business a long time and this is a first.”
It was because she was cognizant that I spent so much time with her at hospice. I didn’t want her to be alone when/if she figured out why she was there. She was weak, she needed oxygen, she couldn’t walk far, and she was in a fair amount of pain, but she was aware.
Mom could talk about politics, she wanted to know who was still in the race. She did word searches. She read the friggin’ newspaper every day. But she couldn’t (or wouldn’t) connect the dots that she was at hospice to die. Even though my Dad had died at that very same institution one year earlier, she, until the end, thought that she would be rehabbed and sent to a nursing home.
Was she in denial? Probably. Was she using classic avoidance? My magic 8 ball says “looks likely.” But you know what? That’s okay. I did nothing to correct her point of view.
Seriously, could you be calm about the fact that you are in an institution to die even though you read the paper and order a bagel and coffee every morning? Is it really necessary that you make that kind of acceptance? Would you be able to? Not entirely sure I could.
My mother chose not to accept death and as a result, we were careful to be vague about her care. “This is medicine to help you breathe” and “Mom, if you don’t feel like physical therapy today, you don’t have to do it.”
Occasionally she’d ask about “the plans” and I’d tell her that the Docs wanted her to be comfortable and stable before they moved her to a nursing home. I never took that nursing home carrot away from her because why on earth would I remove any amount of hope? Without hope there is nothing.
Oh sure there were hints of death. The wailing of a family behind a curtain after a loved one had passed. The talk of funeral arrangements for someone (who wasn’t even dead yet!) the next bed over. The constant visits from Pastoral Care.
But the point was my mother did not accept that she was going to die. She kept on trucking. Perhaps that’s why she lasted eight weeks when in the beginning they thought she’d last no more than two.
I’m not saying that you shouldn’t mention death. I saw many comforting talks among families that accepted the pending death and wanted to help the patient know that everything would be okay and that they were going to be okay. I saw an old lady literally pray herself to death. And I saw a family rally around a young cancer patient who was aware enough to know that she was sent to hospice to die.
There are no hard and fast rules at hospice. No, wait – there is one very hard rule. It’s all about the patient. It is 100% about the patient. Follow the patient’s lead. If the patient does not want to talk about dying, then don’t talk about it. Instead talk about living. Keep it light. Tell jokes. Each week I brought my A-game to perform another episode of the Teddie and Wendy show. My goal was to make my mother laugh, to keep her busy, to talk about the crazy presidential race, and to engage her in life.
If the patient wants comfort or even privacy, give it to her. If she wants some alone time, she’s got it. If she wants to avoid talk of death then avoid it. And if she wants a sesame bagel toasted with cream cheese on the side every morning, you go out and get it. Every. Morning.
Because you can and she can’t.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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