Hospice came today and did an evaluation on Kathryn and determined she does need to be under Hospice care now. The lady was very nice and explained to me that even though someone is considered to have six months or less to go that sometimes people even get better and have to be removed from their care (Kathryrn has never showed inprovement in all this time). She told me all the different things that would now be available to Kathryn and me. I told her we really didn't need anything right now and were doing well and between me and darlene we were able to handle the daaily requirements. She told me they had to come by at least once a week to check on her and I said that would be fine. She also told me there would be a nurse on call 24/7 if we needed anything. That is the most valuable thing to me right now.
I really have mixed feeling about it. On one hand it is good because it is there to help you when you need it but it is bad simply because you qualify for it which means things are not looking good. I was hoping they would say she didn't qualify. The way I feel is like this is just another nail in the coffin. I am really having a very hard time with all this suddenly. When she asked about a DNR all I wanted to do was cry I felt so bad.
Jim, it is so difficult, it seems so final, the first time Hospice enters the scene. I remember just falling apart when I was first told Lynn qualified. That was about 3-4 years ago. I refused their care once Lynn was in the nursing home because their isn't really anything they can offer that the nursing home didn't already provide. Hospice is so different in many areas, like some who really should be on it are refused, yet Lynn was put on it while he was still able to walk and semi function. The whole thing seems off kilter to me. The main thing is to remember you are in charge, that won't change. I am glad it will bring you comfort to have a nurse on call 24/7.
jim so many preconceived notions with regards to hospice. 'terminal and 6mo or less' - scared me as well when my DH qualified. you are right in the fact that it does mean they have come to a point where there is visible signs of advanced declines. but once you accept the help and get over this sad fact, the help they offer will be of great support. having that 24/7 line available will be a huge stress releiving factor as well. the DNR. well, i felt the nail was in my coffin when i put my signature to that page. it was devastating as is all things AD. but its the kindest thing i guess we can do for our loved ones when they are in this condition. we surely dont want them to be brought back from say a stroke or heart attack to suffer end stages in a fetal positiion or coma. most of us have this in place knowing the outcome is inevitable. it is a great percentage of us here that would prefer something other than AD take them sooner than later. i know its difficult. i was in a panic mode just looking at it. its been in place now almost 2 yrs and on a door where i see it constantly as a reminder of so many difficult decisions we must make for the good of our dear unknowning spouses. best of luck. take the leap they will be of great comfort to her as well.
My DH is in a nursing home and is also on Hospice. Hospice has done a lot of extra things for him. They furnished a Geri wheelchair,with foot pads, They put a patch for pain on his chest and back and add the strength if they think it's necessary. The other day, they brought lamb's wool pads for the arms of the chair Just all those things plus extra eyes on him. I'm glad they're watching him also.
Yeah, it would be good if we could tell ourselves that what hospice really means is palliative care, and somehow separate ourselves from the emotional impact of knowing it's an end of life service. Still, I understand. Every "final" thing can hit us hard. I moved Jeff to his downstairs bedroom last week, and the first night I just cried. Even though I was not sleeping well sharing with him because of his health changes...but just the recognition of the finality--that I would never has this warm body in my bed again was a hard-hitter.
My husband was approved for hospice last year because of weight loss. In reality, it was too soon in the disease process and they didn't provide any services that meant anything. They sent the aide too early in the day and he wouldn't cooperate with her; they said they'd reimburse me for some drugs and never did; once he was moved to the ALF, they gave him a flu shot and now I'm being billed for it because he wasn't on Medicare at the time (because of being on hospice). So, all it did was create additional paperwork for me, and the hospice organization billed Medicare for thousands of dollars!
I recognize that it will be a wonderful service for later on, when he is end stage, but I caution others not to enroll their LO's too soon.
Marilyn, dh has been on hospice now 13 mos. He is losing weight and now in gheri chair and pureed food. He is still so sweet and also bad curse words at same times. I grieve now more than ever. Emily I too just wish I could snuggle. Hospice says six months if that long. Its like being in limbo. I am delaying hip and knee repacements until later. Whenever later will be. Wolf hang in there, by the way my daughter and two grandchildren have moved in and I love every minute of their comfort.as hospice nurse said, this could be a blessing.
For the last couple of weeks I intended to start a topic on my dreams, specifically those concerning men, but have not justified it yet.
Anyway. My house, as most where I am located, is just one floor. Garage into house and that is it. For at least three years, H and I have had separate bedrooms. (For reasons in addition to the disease.) It was never really an issue of moving his room; he pretty much just moved into what was the guest bedroom. The bathroom he mostly used was in the hall.
My area is what was our bedroom and the "master bath" as well as closet. You posted that you take Jeff out to lunch every day, so I am guessing he has an assortment of clothing. H rarely leaves the house so wears what are truly comfort clothes. I go into my closet every day- of course- and see the suits and shirts- some never even worn since the last time they were cleaned and laundered. And the ties; how I loved choosing them.
And I mentioned dreams. Most mornings, before fully waking up I expect to feel and sense him there, and he was warm. It takes however long it takes for me to reconcile that is gone forever. I don't cry much anymore. I am more into screaming alone in my car, but hurt is hurt.
Kathryn can walk around the living room pretty good only real slow. Kind of a shuffle. She can eat if I cut everything up for her small. But that is about all she can do for herself now. They said where she is now in the Alzheimer’s and the fact that she doesn't eat much and has lost 32 pounds justified putting her in their care at this time.
I haven't been able to sleep in bed with her for about six months or more now and I sleep in a recliner right out side the bed room door so I will know if she moves. I only sleep 4-5 hours a night at the most. But I have never been one to sleep long periods of time.
After getting her of the hospital last week she has continued to have these anxiety attacks and I can't tell the difference between one of them and a heart attack. I am so worried I will not call for help when she really needs it so the 24/7 nurse is a big relief.
I just don't know what to do now. All I can think about is Kathryn and that this just can't be happening. I need this fixed. I need her to be ok. She is my life. I don't know what to do.