I had a meeting tonight as I said earlier. She met Al but spent more time talking to me. We didn’t let on to Al that she was a Hospice person as he remembers Dad having them with him.
I always think I have things figured out, but am proven wrong time and time again. It is a touchy area we are in now. With Al coming home on a waiver, Hospice may not be able to come in between the waiver and Al.
If I allow Hospice in Al could lose his fifty hours. Instead of help coming each morning and helping him to get up, bathe and dress, Hospice would provide bathing twice a week and a nurse every few days.
There is much to check into for her. She first has to have the approval of the doctors she works for that Al would qualify, no matter how much our own doctor has written a prescription for it.
Al would not lose his day program, but which is more important? Him being bathed daily and helped with getting up and breakfast? Or, two baths a week and a guaranteed visit with a nurse?
She is supposed to let me know in a couple of days. I don’t know the answer. The lady said Al should be on palliative care which is agreed by all doctors. She also stated that taking Al to the ER for every internal fake heart attack may be a waste of time. She agrees with our own doctors. But other than that, I don’t know which way to go if she comes back Wednesday and says he was approved.
She did mention that she could check and see if hours could be divided between hospice and Al’s own hours since he has so many. What are your thoughts on this?
Who I am 
I am confident that Hospice will come up with a solution. Palliative Care is what they do. The burden will be on you so you need to decide how much help you need. Good luck dear Terry
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I hope it works out in the long run because I don’t need to be making anymore decisions right at this time
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I also think so that Hospice will think of a solution. Hugs
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Wow, that is a tough decision to have to make. I would imagine having a nurse might be more important at this stage but I have never been in your position so it is really hard to say.
ivonne
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yes it is a tough decision. I am not sure if I can give him a bath alone since he is so weak, so this is a big pull on me
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Terry, my mom was put on palliative care and had regular visits from hospice nurses, but she was in a nursing home. Are you still planning to bring Al home? These are terribly hard decisions. Hospice was wonderful with my mom, and it was a comfort to us to know that she would be kept as free from pain as possible. I guess you’ll just have to wait to see what your options are. Praying for you, Terry.
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Yes, he is coming home on a wavier this Friday. He has quite a few hours for help here at home with no nurse. So I don’t know what is going to happen. I guess I will find out tomorrow
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Very difficult decisions. I will continue to pray for wisdom and peace for you both.
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thank you dear friend
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I think that the decision about one or the other needs to wait until you know for sure that you have to choose, perhaps if you do have to make the choice, it should depend on what kind of help would be best for you right now Terry. Waiver will take a lot of the work off of you and allow you to spend more quality time with Al, and the hospice could probably come in a little later. God bless you my friend, it is a hard decision but don’t make it till you know all the facts.
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that is what I am thinking too, the help that I will have for Al is quite a bit verses a nurse coming once a week and a bath twice a week, who knows, maybe I can have both wavier and nurse
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So complicated.
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I thought life would get somewhat easier with the help, now there is different kinds of help
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The system here is complicated too, but we have been lucky.
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why does everything have to be so difficult???
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I’m going to be checking back to see how you’re doing, and offer my support and encouragement. You will make it through this, I know you will, your heart and your instincts will lead you. Hugs, dear one, hugs.
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thank you so much my friend. Knowing I have friends who care so much make my job in decision making a bit easier
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You’re welcome, glad to be here. 🙂 Hugs.
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A combination of the two sounds like it might be good but I don’t have much experience with this Terry. Praying for Al and for you, that the best care will come through.
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It would be the cake and icing if I could have a combination of the two
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I’d go with the wavier first
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I am leaning that way, more help, don’t you think?
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yes
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hospice is going to offer better pain control aren’t they? won’t they be able to order the things he needs to make his life better? as his needs grow won’t they grow with him? what is going to be the most helpful to Al? the dr asked for hospice due to his inability to swallow, are there things that only the hospice nurse can do that you or anyone else coming in to care for him couldn’t do? you have a big decision to make and i would recommend have as much information as possible and can you change your mind without waiting for months for the change to be approved. i will be thinking of you and sending warm hugs.
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the hospice nurses has different medications, creams etc for pain, this is very true. They also are the ones who will work with the aspirator machine, which no one else can do. perfect would be a combination of the two, splitting up the hours. I have a meeting with all the important people Thursday, I will bring this up. thanks for the great thoughts
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Such a difficult decision.
Since I don’t have experience of this type of thing, I wouldn’t like to offer an opinion.
But I would think the ‘s blake callahan’s’ sounds the most sensible.
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it does, but I am not sure I can give Al a bath by myself
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The Hospice people put patients first, so I think she will try to find the best solution.
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I hope this all works out and Al is always the priority
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I’m going with one of your blogging friends…now the care you had started and then Hospice in later days…just an oppinion!
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that is a good idea Marilyn, No one says I can’t add them later on. Thanks for the idea
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I don’t feel qualified but that sounds like a good idea to me also. However, hopefully the Hospice nurse and/or the doctor will come back with the right solution.
I am confident that if you pray, God will give you wisdom and the right decision. “If any of you lack wisdom, let him ask of God, that giveth to all liberally, and upbraideth not; and it shall be given… James 1:5
Praying daily for you and Al.
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bless you and thank you Single. Your words are comforting
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Maybe ask yourself also, what is it I enjoy doing for Al and can do, and what part do I need help with to make his life and mine together comfortable? You’ll know and God will provide. 🙂
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I believe the most difficult moments will be bathing him and getting him up in the mornings. His body doesn’t move very well first thing and he is so weak bathing will be difficult done just by me. the meals and companionship I can provide him will be the easiest parts. The depression and the wanting to die will be the most difficult emotional times as I can not grant his wishes
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Terry, can you get your son to help with the bathing? Maybe not everyday, but scheduled when he is available. Have you talked to your pastor or deacon? Maybe he can solicit the church for help from some of the men and/or other members to volunteer to help. At least solicit him for help and prayer about the decision you have to make.
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You may need more ADL services. Just be there for him Terry and keep your faith, and keep blogging you have a lot of support. 🙂
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my son nor any of my family will help in the bathing area. it is sad but part of me understands. I really need the help with bathing, he is too weak to sit too long. I have not asked the church, but many months ago I had asked the church if anyone could use a few extra dollars by sitting with him so I could get groceries and I received no response. I can ask for prayer from them, thank you
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I agree Chasing, tomorrow I should know what decisions have been made as far as hospice
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This is so hard. I would not rush into making a decision, get all the facts together and then sleep on it. I know time is of the essence here, but it isn’t an easy call to make and I certainly don’t feel qualified to advise. Is it worth asking your doctor for his opinion?
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the doctor has voiced his opinion. he wants Al to have hospice because of aspirating
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Praying the Lord will give you wisdom as you make these decisions. Very difficult indeed. Lord bless you for your love and diligence in caring for Al.
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it seems like I need God more than ever right now, so I want and need your prayers, thank you
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I think somebody has to come to help you daily, Terry, just to help you with the physical things and check-ups. I hope you’ll get some cooperation in everything!
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I just know that in the end everything will be as it should be, but for now, way too many decisions!
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I hope and pray that everything will work out and they have a good solution. You do need help and it sounds that they are caring and can give it to you!
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I am praying it will all work out in the end. Al will have everything he needs. Thanks Ute!
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