Yesterday evening, the social worker at the nursing home brought me a pamphlet listing the names and phone numbers of local Hospice chapters and reminded me that Hospice was available even in a nursing home. I suppose that was her way of telling me that it is time without coming right out and saying it. I have been right up there with many others here wishing for a quick end to this horrible journey, but if that is true, why am I having such a hard time accepting that it is time for Hospice? I want his agony to end and I want him as comfortable as possible to the very end, but I am not READY to let him go. Help. Need kind words, good advice. How can I get past this?
ehamilton, I can't give good advice, but you have my thoughts and prayers. I do understand that this is difficult time because we all have those mixed emotions. Sending a big hug and hopes for peace of mind....
WE had hospice for my mom and I went through these emotions you mention. It is terrible. Maybe the social worker was just letting you know that because your LO is stage 6-7 that anything can happen and suddenly when despite the stage he may seem stable healthwise otherwise.
Our neuro told me to search nursing homes not that we need one NOW but to know what is available and how it works..
Maybe if you think of it this way, when the time does come. however far away that might be, you won't be caught unprepared when you are under more emotional stresses.
My wife is still at home, but after she was in the hospital with pneumonia last Spring her doctor suggested that I get hospice. They provided several benefits, the most important being 5 days respite where they took care of her while I went on a trip. This did not suggest that she was near death, only that she met the medicare criteria. Unfortunately, according to medicare she has not deteriorated enough, so she has been discharged from hospice. However, the next time she shows significant deterioration she will get back on. This on and off can last for years. The other benefit I get, which I still get, is a hospice volunteer (no medicare money) to take care of her while I go to Rotary once a week.
Going into Hospice care is not a death sentence. They will just be more help for you and the team who cares for your LO. Even though the criteria is tighter these days, in the past, some people have been in Hospice up to 3 years. We had them for a very short time, but during that time, they added to the hands on care my DH received, hellping him with his bath, using (their) cream on his dry itchy feet, legs and arms, gently shaving him and dressing him. I'm sure the nursing home would appreciate the extra help. They will take over his meds and often they eliminate some. Once on Hospice, we had to work with THEIR doctor not our own. My husband died only five weeks after Hospice came on board, I did wait too long to consider them. I was glad they were here when they were.
ehamilton, very good advice from others. Hospice suggestion for my Mom took me by surprise and I, too had lots of thoughts going through my head. She was 92 and living with us. But they did the evaluation and signed her onto their program and she was with them 6 months before passing. Marvelous having them on - when the time comes. They were only with us 2 weeks for my dh, who passed away peacefully at home. Having them only a phone call away for advice, 24/7 is a wonderful benefit they provide. Like Nancy and Marsh said, it is not a death sentence.
We have had hospice for a bit over a month now, and I hate to think about not qualifying after the initial three months. The three gals that we have are such caring quality people, I am amazed with every visit. An added benefit is G is LOVING the attention! Of course, that means when it is just the two of us, it is very boring .
ehamilton,I know how you feel also, it still amazes me to think that my DH would qualify for hospice and I am not ready mentally for it but practicallity tells me that I need to be ready because I am not going to be able to afford a NH so... I do understand how you feel though. I think that it well become more real if he is on hospice and I am not ready for that yet but I also know that I am going to have to be ready. I agree that waiting until we are too stressed out to at least check into it would not work as well. I like to have all my ducks in order.
ehamilton, I have watched my husband suffer in a great deal of pain over the last couple of months, have problems swallowing and it was awful. A switch went off inside of me that said I was ready so I looked at him and thanked him for waiting until I was ready but I was now. Shortly after that he stopped eating and today he is gone. He waited for me to be ready. It was very difficult but having been through it, for us, things worked out to happen at the right time and I am very grateful.
My dh has hospice. He is very functional but hospice is here because he also has COPD. I don't think they will renew after the 3 months is completed, however I learned a lot from them and I am glad they have been here and later when he gets worse I can just call them and they will return.