I will read as much as I can to understand what goes on now. But, if anyone has anything to add, I could use it. I do know we will have more services now. There are volunteers that will come twice a week if I need them. He will get a massage when he wants one now and then and they even said I could have one. He will no longer be going to ER or to his doctor. Lucky for us, our doctor is the head doctor for Hospice. He knows my Partner and it will be easier.
What did you find that was NEW about Hospice that helped your patent and yourself. I know one thing that will be new and that is diapers. He will be difficult to allow this. I also need to get some loose fitting sleeping clothes. It is SO difficult to dress him everyday.
For his pain, he will either have drops under his tongue or pills. He is having trouble swallowing and I THINK I was told this is part of Parkinson. What foods do you recommend I make? Any recipes???
My dad was in hospice for 7 months. They came and discussed everything with us and at this point my dad was still feisty, stubborn and actually hostile to the hospice people. The first week they brought him a hospital bed, a wheelchair and some other supplies. He didn't get into the bed for almost 2 months. We were beside ourselves with frustration but hospice said "he's not ready".
Hospice offered to come as often or as little as we needed..depending on my dad's condition.
The whole experience was, for us, a very, slow downward progression. My dad had months of just laying in bed, having lots of visitors and rrelatively good days. He would want to eat and then slowly he would lose his appetite. We were able to do some of his grooming, etc. on our own (his choice) but then as he got weaker Hospice stepped in and did that.
Near the end my dad's weakness was so profound that hospice needed to physically move him (we couldn't do it on our own) and he got a UTI so he was placed in a nursing home for about 5 days until he died.
Hospice will do whatever you need them to do. But, we were our dad's advocate and had to step in and question a few minor things. It was a such a gift to have him at home near the end (except for the 5 days in the nursing home).
I miss him terribly :( he died on March 28th
Encourage him to drink, but know that he will get dehydrated, it's part of the body's shut-down process.
Hope the pieces fall into place quickly, and that you are able to enjoy the time the two of you have left.
I just wish I could get him comfortable in bed. He is so CRUNCHED up. I really need to get him to understand it is ok to go in his diaper. They have pull ups on him, but I will go for the diapers as of tomorrow. He will have a cathater inserted tomorrow. He is so agreeable. I love him so much. I have a feeling he will not be with us long. I am so sad about that. No they said to just keep him comfortable, do not force him to eat. But, liquids are important to me. I don't want him to get dehydrated and I cannot wait for the cathater. I don't want him to get an infection.
Thanks everyone for your help. I will miss this man so very very much
Similar to Liz, I bought a few thrift-store nightgowns and robes and cut them up the back so they went on like hospital gowns. The snf had super-absorbent mats (roughly 2' square) in lieu of diapers for bedridden patients. I was surprised how well they worked for keeping her dry (with no underwear of any sort). The staff had some way I never figured out to tell when one needed changed, and they'd roll her side to side to move the old one out and a new one in its place.
Mom had a lot of trouble swallowing, they had her on a 'thickened liquid' diet which meant everything the consistency of pudding. They had some kind of powder to add to liquids like coffee and juice to make it thick without changing the taste (much). Hospice stayed with this, but put a stop to pressuring her to eat--it was offered but without the prior insistence that "you need to eat this, come on eat at least a bite". Pain med was liquid drops as she couldn't swallow pills.
Here's hoping things go as smoothly as possible, and that your hospice is as good as the one we had for mom.
In addition to the obvious baby food, puddings, etc., mom was able to enjoy finely chopped egg salad and most any bread/toast/starchy food dipped or soaked in different liquids. Toast soaked in honeyed tea was a favorite. Blessings. Liz