Hospice wondering whether we ought to see about going back on regular home health.

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I must be in one of my emoting moods today because here comes my second question. We have been on Hospice for a little over four months now. And I will say they have been great, especially at the beginning.....BUT....Mama has been improving exponentially over the past couple of weeks and while right now it is probably too early to think of going back to regular home health, I am starting to entertain the notion.

Mama seems to be doing so much better. She is cheerful, she is an integral part of our daily life, even though she is totally bedfast, she still talks with us, is eating her "usual" meals and honestly seems about as happy as any elderly person I have ever seen. The every other day commentary from hospice about her "decline" when I am not seeing it. It is not that I am in denial...everyone who knows her sees it.

I remember as a small child, going to see my grandparents, towards the latter part of their lives they were bedfast, but they were a huge part of life of the entire family and they did not have hospice back then. Folks weren't coming in and grilling my aunt about every tiny detail about how much she eat, how much she poo'd, etc. etc....the chaplain called me one day and did his usual "check her off my list phone call " and asked how i was. I told him I was great, that I was planning a little party for Mama's 90th birthday...he asked when her birthday was...(at that time it was still about six weeks away)...he immediately took on a very somber tone and told me he hoped she was able to continue that long or something to that effect....

I AM TIRED OF LIVING MY LIFE LIKE MAMA IS DYING...We are ALL dying...But I want to LIVE while me and Mama are dying.....enough of this gloom and doom and thinking every breath is her last. My God is an awesome God. He alone knows when Mama will go home....In the interim, I am not blind to what can happen. I know full well she could go to sleep and not wake up. BUT Mama is laughing, she is talking, I am singing with her and she is LOVED....and I want to dance and live with my Mama while she is here..... stop trying to take away life from us.....


It's hard to tell from where I sit whether mom is getting better or if you are experiencing some denial. The best person to assess this is the Hospice Nurse. They do have "graduates" from time to time.
Do you want to have the chaplain stop calling? Say so.

Would you like the nurse to stop asking for such frequent detailed reports on your mother's status? Explain that to her or him. Perhaps offer to give her a report when any of the details change significantly.

What will be will be, with or without hospice involved. Surely hospice is not stopping you from singing with Mom or laughing with her or planning a birthday party. In fact I am surprised that hospice isn't encouraging these things. Maintaining the best possible quality of life even during the dying process is one of their missions.

If mother is improved enough to "graduate" then she should disenroll from the program until she needs it again. If hospice still considers her eligible but you don't think the benefit outweighs the negatives for you, you should either try to negotiate changes in the things you don't like, or you may disenroll her.
I am aware that in Hospice, the nurse must ask detailed questions, as they are required to make continuous assessments regarding a patients improvement or decline. I am not in denial. I am well aware of Mama's fragile state, but I think it is important to individualize hospice depending on what each family needs as a one size fits all clearly does NOT fit all. I have discussed in great detail all of these issues so I am moving forward just answering their questions and doing what is best for Mama and then when they are gone we will enjoy our time together. Certainly no one is stopping me from singing with my Mama, she has always been a very happy and positive person and even now continues to be so. I am just not a believer in being sad and morbid all the time about one of life's biggest final journeys. I know that God will do what is best for Mama and will guide me along the way to do the same. And in the meantime, we will celebrate every moment life gives us...

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