The first stage of hospice

Patty
My husband was on hospice for 10 days before his passing. It was suggested months ago but just the word "hospice" frightened my husband. So, on his last trip to the hospital (6 of them) and he came home, I told him the nurses were from "comfort care". It was 10 days and the nurses spent the night for 6 of them due to my fatigue. I can tell you that hospice cares just as much about you and they will Jack. The only thing I would change if I could would be the medications they gave him. It was too much I think. They said it was needed to due anxiety, and maybe in some part that's true, but I wish I had forced them to reduce the amount so that he could have been more alert. They gave my husband 2mg. haldol and morphine at 2ml. I wish I had cut that at least in half. Please talk to them about the amount they are giving....start small and then adjust if needed. Don't start on high doses like we did. Even losing 5 minutes of time with your loved one matters.

Together
We are all together in this fight. As you probably know, my husband is also on Hospice. They really are there to help both the caregiver and the patient. I made a call to them this morning because I was just overwhelmed. It is hard to accept that nothing else can be done and that we are fighting for quality of life over quantity. We had always expected to eventually come to this point, but that doesn't make it any easier.

I would agree that it's important to watch the amount of meds that are given. We decided on our own to cut back on the morphine today. My husband didn't like feeling totally out of it. They tell us that it will help him breathe easier, but he actually seems better now. We have moved his chair and I have requested a hospital bed. He has been sleeping in his chair. We are having one of our bathrooms remodeled. He had to go down a few steps to get to the remaining bathroom. He fell doing that, and I had to call the fire department to help get him up. Now we are camped out in my mom's room which is next to the bathroom. My sister has my mother for now.

We had our last trip together to Yosemite. It is beautiful with all the fall colors. We stayed at the Ahwahnee Hotel because my husband said he had always wanted to do that. We probably should have gone sooner because he slept much of the time. Using the wheelchair and oxygen made things a bit difficult. We had a beautiful room, though, and the view was incredible.Our church did a "bucket list" collection and gave us money to help with the expenses. That was a nice surprise. Fay

Hi Patty,
Even though I am
Hi Patty,

Even though I am new to this site, I am not new to being the primary caregiver for my husband or new to hospice. My husband has been on hospice for 10 months. While it was hard ot navigate in the beginning, I learned that when we didn't like something to say it. In fact, the first RN they assigned to my husband was a brash, pushy woman who basically wanted to run our lives. That was not going to work for us, so we told the hospice director exactly what the problem was and a new RN was assigned and has been with us ever since. She is an angel!

My husband by no means "gave up" when he went on hospice. He was given only 3 to 6 months back on December 19, 2008 and he fooled them! Here it is 10 months later. All I can tell you is that my husband's hospice team has not only helped us with the medical, they have helped us with the emtional roller coaster a diagnosis like this brings. These people are like members of our family and treat both of us with dignity and respect, and love.

Please read all the information that hospice gives you so that you know your rights and don't be afraid to ask questions, demand things if necessary, but most of all take advantage of all they have to offer.

My prayers are with you.

pattynonews said:

you give me hope
Our nurse seems to be very nice and she is straight forward too, If I can ask does your husband sleep alot It would me amazing if I could have Jack 10 months from now, They gave me a little blue book to read which was very hard, Jacks sister has given me many books about dying and what expect as the caretaker but I cant seem to pick them up,It is like I am afraid to know, I had this fear when they brougt hospice in like this is the end and at times I still feel afraid, I even start crying when I hear that word and Jack in the same sentence, just some how try and focus, Im so scared all the time, Is it just me or are there other people out there like me!!!!

Patty
I'm so sorry that you're having such a hard time and I can certainly relate to your feelings having just lived it myself. All the books in the world that tell you what to watch out for in the end are different....each person passes differently. Just rely on your instincts and go from there. My husband had very few of the symptoms they described.

God Bless both you and Jack my dear. Return here often and let us know how you're both doing. There are so many people here who follow your story and truly care....including myself.

(((HUGS)))