September 03 2019
Written By
Barbara Karnes
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Do I Want Home Health Services or Hospice?

Do I Want Home Health Services or Hospice?


Barbara - October 02 2019

Hi Terry, first my apology for being slow in returning your comment, I left the country September 8 and just returned home last night. Now to your mom. When dementia is part of the disease progress it is very difficult to gauge approaching death. Dementia just doesn’t play by the rules of approaching death from disease or old age. From what you have described of your mother’s disease process I am surprised she is even on hospice—drip feeding, 10 months and now a year of hospice. To be honest she is declining too slowly (probably because of the excellent care and attention she is receiving from you) to meet the criteria for hospice. Hospice is for people with an expected six months or less of life. With dementia it isn’t until the person is not eating enough calories for maintaining the body, and artificial feeding has been rejected, that they enter a predictable dying process. You are a wonderful advocate for your mother. You are what all of us need as we live with an illness. Our healthcare system today is such that we, who are sick, need an advocate at our side. Someone who will speak for us when we can’t, listen for us when we can’t hear and comprehend and guide us through the labyrinth of illness and healthcare. Bless you for the work, care and love you are giving. Barbara

Marie Williams - September 16 2019

I have ordered a number of your books, and have read : GONE FROM MY SIGHT, and HOW DO I KNOW YOU? I have enjoyed reading them both.

Joanne Ciampi - September 12 2019

This is great. I was having a conversation about this very thing yesterday with a lady who stooped by our office looking for information for a friend. I wish more people had a better understanding of hospice and less fear of the word hospice. As you said, we are all dying. The difference is, some have been told their death is within a certain time frame.

Terry - October 02 2019

This is so true about hospice care, and how much they can offer. It is also true that sometimes you just have to change hospices, which I did a year ago… my mother was in a nursing facility with hospice care for 10 months, but they had a problem with ME, not her, and it became a battle at every turn. From keeping supplies in stock to caring for my mother’s personal hygiene, we had an adversarial relationship. Some of it was that I did not have sufficient information, and they never provided it, and part of it was because I was so hands on at the facility to be sure my mother was kept clean and treated well, was administered her medications consistently (mood stabilizers), and fed. With dementia, she had developed pneumonia, and then C Diff, so hospice seemed a good idea. But I continued to drip feed her (wish I had let her go, because she was ready, I think) and she rallied. At 10 months, she had a TIA, and they refused to acknowledge that, for some reason, but I insisted she needed PT, OT so she could continue to feed herself a bit, as she had been doing, although she was bed-bound, and could no longer walk. The Dr was helpful in getting her off hospice, and on limited therapy, and yet, my relationship with the facility (the nurse with hospice had taken the DON position with the facility) was so poor, because I was there every day, with mom, and made sure she was well cared for. Long story short, I moved her home, got another hospice program in place, and almost a year later, she is still doing well, however, she is slowing down. I don’t know if she even qualifies for hospice at this point, but it is a difficult call to make. They continue to certify her, and she gets meds, supplies, and hygiene assistance three times weekly. So, this article was of interest to me, about where we are, medically… hospice, or home health care? Any advice?

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