When I arrived at the hospital, Bear was near tears. It turns out the social worker came in to see him. She told him that we are going to have to look at other possibilities in regards to his living arrangements. He has been on a plateau long enough that they feel that he does not really need to be in the palliative care unit at this point. The other options include Hospice, Nursing Home, or at our house.
Hospice and Nursing Homes would require us to pay a daily fee. I have heard it is $30 / Day to stay at the Hospice. It is not unlike staying at a hospital, except that the hospital staff won't be checking on him on a regular basis, if my understanding is correct. At a nursing home, he would be much younger than the bulk of the people there, and that is one of the main reasons why this would not be the best option. It would probably be very depressing for him and he is depressed enough. With either of these options, I would have to go back to work, and full time at that, which would mean I will have no energy to spare and not a lot of time to spend with him.
Coming home is really the best option emotionally and financially, however, it would be very difficult as I've mentioned in a previous post. I really would love for him to be at home, but I am not sure how we could make it work.
I do not know why this all has to be so complicated. I feel very stressed out about all of this and I don't know what to do. I'm sure it sounds like I don't want him at home at all. I do, but I also want him to have the best care possible.
The social worker even went as far as to say that if he comes home, it is unlikely we could get a lift to get him into a chair. So that would mean that Bear would have to be bedridden all of the time. He is having a very difficult time with being bedridden. I do not think being in the hospital bothers him that much, but being stuck in the bed is really getting to him.
I fear that if he comes home and is bedridden one hundred percent of the time, he will go downhill fast.
It turns out that Bear has blood clots in BOTH legs, not just in the right leg as I previously mentioned. The left leg is starting to swell up now too.
He is still unable to move his legs. He can not even wiggle his toes. Over the weekend at one point I pulled back the blankets to check on his legs only to find that his foot was trapped between the bed and mattress at an awkward angle and he did not even know it. There's no telling how long it had been like that.
I have been trying to focus on all the positives... but it is getting harder to do so every day. I go and spend time with him and I find I have nothing to say. I'm watching every word I say for fear of upsetting him or saying anything that might worry him. I dread mentioning any bills that have come in the mail, but he is always asking me about them.
One day at a time... or One Bear Hug at a Time.
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7 comments:
I just wanted to let you know that I'm still praying. I don't know what else to say, but please trust that God knows your needs and He is there for you, always.
Oh my goodness Ter. It must be very difficult to be in such an awful situation.
Check into getting a lift for him at home... maybe the hospital or hospice would have one you could borrow?
I hope that you are able to find a solution that will work for you both!
You are always in my thoughts and prayers.
Know that God is with you, too.
I am so sorry that you are on overload...sounds like home is good but how much help would you get from home health care? I also hope you are feeling better and getting over this cold...daily trips to the hospital can wear you out...We brought our Father home and we all took classes on how to assist him in walking and sitting...it is hard but it was so worth it...{{{{HUGS}}}}
Continuing to pray for you both! I can't imagine what a struggle it is to try and decide what path to take next. How frustrating that he can't stay in the palliative care.
I think you are very honest and strong to admit that bringing him home might not be the best option. That is not selfish. You are thinking of what is best overall and there are many pros & cons to all of them. I pray God will lead you both in the best direction. ((HUGS))
((((Ter))))
Okay, Dear, here is a pep talk:
YOU CAN DO THIS! You can muster up the courage and strength you need to talk to Bear's doctor and plead his case to remain where he is....Also, you can muster up that same strength and courage to sit down with the social worker and plead B's case to remain where he is.....
1) He is only doing better because he is more comfortable.
2) He is having clotting issues which are quite severe.
3) You do not have the means to support him, physically, at home.
4) You do not have the means to pay for him to go to Hospice or a nursing home.
5) You have a public blog going about B and his care and your readers are appauled!
6) It is imperitive that B remain where he is, at least, through the holiday season.
7) It is very poor social work to imply that B is not "sick enough" to remain in palliative care.
8) NO!
9) NO WAY!
10) ABSOLUTELY NOT NEGOTIABLE!
Let me know how if I can help you with this, Ter.
Just letting you know that I'm praying for you and Bear. May God supply you with the wisdom to deal with Bear's care.
LOL, I love Dana's # 8, 9 and 10!!
I agree, he is not ready to leave palliative care. I hope they come to understand that. It seems that in some ways the American healthcare system has its advantages, though you can still run into real trouble if insurance decides not to pay for some form of treatment or long-term care. The only difference is that you have more choices, possibly.
Thinking of you both always and wishing you the best. (((BIG HUGS)))
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