Follow
Share

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???

This discussion has been closed for comment. Start a New Discussion.
My father wanted to be creamated, and it turned out to be a blessing as dad passed so fast. Now mom wants it too.It was done in 24 hours and they were wonderful to us all. His service was a few months later, and lovely. Be glad he thought of this before hand.. and was thinking of you as well. Good luck
(0)
Report

Rosanne3 Thank you for your comments. I can see where every hospice situation would be different. Right now mine is sad only because I am going to miss my Knight in Shining Armour so much. My mother was on hospice in a hospital in Long Beach California. They took such good care of her. If he gets an infection, it will be part of the dying as I will not let them put him in a hospital or nursing home. We promised each other that we would die at home. NO MATTER WHAT. He is being cremated. I personally don't believe in Cremation, but he does, so I will go along with his wishes. He asked me to go to the garage and get his Urn off the upper shelf today. He said I would need to give it to the people when they come for him. I could not believe he was even talking about it. He talks little, and just says he loves me. He put his arm around my back as I laid next to him. He is loving me all the way to the end. I am SO blessed. People come, and they cry a lot. I have to let them. I cry by myself. If they cry, it makes me cry. I don't want him to hear the crying... I remind him that Jesus Christ is coming for him with His angels to carry him Home. I feel the pain in my gut...
(0)
Report

Towards the end my ex liked puddings and custards. Also ice cream. He was not terribly interested in solid foods. He still liked chocolate so chocolate pudding became a favorite.
(0)
Report

Hospice was the beginning of the end for my dad but it was a blessing in a million ways for our family. I also believe that each hospice experience is as unique as the hospice patient and their circumstances.

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
(1)
Report

Oregon, yes I can believe, my parents' gardener of 18 years was a huge help to me last summer--she knew all the informal networks in their town and who to call to make things happen. People you can trust matter, not what role you know them in.

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.
(0)
Report

Can you believe I had the gardener come in to sit with him today so I could go get groceries. We have known him for a LONG time and I trusted him greatly to take care of my sweetheart. Hopefully, they will have the volunteers here in short order. I worked as a volunteer for 5 years. I know how dedicated they are.
(1)
Report

Thank you Feeling Lost...I agree...No further fight to GET BETTER. Eventually, we have to accept they are not going to get better. He has problems with pills and I think his meds start coming tomorrow. Its a bit slow getting the Volunteers, but the LPN came today to show me how to move him in bed. Unfortunately, he refuses to just wet his diaper yet. So insisted on getting up. He weights 200 lbs. I got him to the potty chair and betting back into bed the way the nurse had him is impossible without two people. I hope I can get him comfortable to sleep tonight. I will try whatever I can but I don't want him to hurt. EMJO23,...Thank you, I will keep everyone informed. I have a feeling it will not be long. I blended some Blueberries and banana this afternoon for a snack. BOY 2nd Gen....I walked past the baby food today and thought that would work SO WELL. BREAD soaked will work. I was going to leave bread out. I will blend the potatoes and carrots for supper.

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
(1)
Report

We had hospice in a SNF for the last week of my mom's life last year. What was new and wonderful was that she was no longer expected to "make an effort" to get better. From that point it was just about making her comfortable and letting things take their natural course (which was very rapid).

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.
(1)
Report

((((((hugs))))) I'm sorry.
(1)
Report

I'm assuming you're doing hopice at home and you are the primary caregiver. If so don't hesitate to ask for respite care and/or companionship visits. This will allow you to get out, run errands, take a walk or whatever. Let's us know how things are going.
(0)
Report

When mom got to where she wasn't able to move around much, I simply cut a few of her gowns up the back and just put her arms thru them as a shroud. Covered everything without having to actually dress her. Same idea with the diaper, I shoved as much of the diaper as I could underneath her and pulled it thru her legs in the front, without taping it or fastening it in any way. Easier off and on. Near the last, I just pressed a Poise-type pad between her legs. I peeled off the back and covered the sticky part with a strip of paper towel so as not to stick to her. Obviously different with a male patient, just throwing some desperation ideas out to you!

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
(3)
Report

This discussion has been closed for comment. Start a New Discussion.
Subscribe to
Our Newsletter