What would you do? I have had plenty of sleep and therefore I have plenty of open space to think. If you knew that you were going to cause physical pain by allowing Al to continue to go to Day Program would you let him go? Would you take him out to eat on his good days?
Would you keep him home and bed bound pretty much? Would you consider as I have what that will do to his emotional state of mind?
While he has been at the Hospice House he had been bedridden. His tremors have slowed down with a new medication. He continues to sweat but not as bad. The doctor says he can’t get the sweating or tremors to stop permanently.
He is considering when sending Al home with some sort of pump for medication. He states that when Al is active he is going to go back to the way he was this past weekend.
I am not able to make a decision because I can see how I would be if I was pretty much stuck to a bed.
To me there is more involved here than his physical state. I can not ignore the fact that he is slipping a way. So what do I do with the time he has remaining. Let him live? Consider his mental capacity that he may not quite understand that he will suffer?
I am rambling on and saying the same thing over, so now I want to read your thoughts please.
Who I am 
He’s going to suffer no matter what you do. I would let him do whatever he wants even if that decision is to go out. Even if he is mentally challenged he still has the right to live or die his own way. I do not envy you. I think of you often…
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thank you Snoogie. You make a very good point. No matter what , it is his life, thanks so much
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Snoogiefisk makes an excellent point. Let him enjoy what he can, while he can.
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I will as much as he can afford feeling to do. Hugs my friend. you are so caring
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Agree …ask him… if he wants to go…I would take him…and then rest a few days…Live until the end …
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I am swaying to this side too, I just hate to take on the guilt of watching him suffer knowing I could have said no
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The decision you have to make is so very difficult and I do not envy you. I too think I would leave it up to Al…ask him after he is settled back home how he feels about going to day program remind hoim that his tremors and sweating will be worse but that if he wants to go he can. Love and prayers for both of you my dear ones.
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I will tend to carry guilt watching him suffer but how can I say now when he has little time left? it is so hard
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It’s a difficult thing to do. Knowing where he is going and how fast he is getting there. The only thing you can do is to make him as comfortable as you possibly can. You are doing as good a job as you ever can Terry. I am sure he is proud to have you as a sister looking after him
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I try to do my very best Alastair, but it hurt me when the nurse said he didn’t really want to come home today. i am trying to look at like kids who go to grandma’s house. They don’t want to leave although they love their parents
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Hey Terry, one thing I can tell you is if they send him home with a pump, I don’t think his emotional state will be too bad. I’ve been on a pump. You don’t care about much, you mostly just want to sleep. The pump will bring him relief and maybe that relief will be what he needs to lift his spirits.
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well the doctor called and they are not sending him home with the pump after all. They are hoping his new medication and him being in bed more often will help. I guess it will depend on what Al does. I will talk to him. I learned he is coming home today at 5
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I wish you all the best. 🙂
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thanks so much my friend
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The fact that Hospice are considering using a Syringe Driver is indicative of how serious the situation is. As I said before, let Al decide the level of activity he is up to. If he is in pain or discomfort just leave him where he is comfortable and at ease. Good luck Terry!
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I guess they are not going to send a pump home after all, which is alright with me. They are sending him home with the new medication. What Al does is how his life will be affected. I know that I will talk to him. He is coming home tonight at 5
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I can add nothing that has not been already said. May the Lord guide you as you make the needed decisions. Lord bless.
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thanks Rob
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One thing I wanted to add (because you know I never shut-up), is that when I feel really bad and tired, I don’t mind staying in bed, especially if there is nothing I have to get up for. Just sayin
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me too, I guess I was thinking of everything he may want to do, but when I don’t feel well I am in bed too, or try to. LOL. thanks becky
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I always say you are a wonderful sister to Al. I can imagine if only he is not mentally challenged he will cry all of his life to thank you for what you had been doing to him. I am sure you will be happy for what makes Al happy, which also means you can’t afford to deny him what he wants. The best years in Al’s life is his remaining years with you.
Thank you, Terry. You have been an inspiration to most of us.
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thank you Maxim for a wonderful comment. I have talked to Al tonight and he wants to try to go back to Day Program. He said he would try it. He didn’t throw any kind of fit. He said he may give up one day so we can go out to eat once on the weekend. I think he is understanding pretty good
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That’s really nice to hear. I hope you are now enjoying with each others company.
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He has been so bubbly and chatty. I love this new Al. He keeps telling me over and over, I am so glad I am home sis. It makes my heart swell Maxim. I love it
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Maxim, my dear friend Maxim. It has been two rough days here for Al
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Terry I’ve been bedridden 22 yrs and, most of your concerns aren’t really he’s because his state of being isn’t one of full control. He has been able to go and do much… now, let him choose if he can; personally dear, if it were me, I’d just want to be comfortable ~I don’t believe he’s thinking in the same vein as he used to. YOUR presence is deeper comfort than going to a mall. Talk with him and believe me, that’s going to keep him serene when you’re not there. I’m praying for you hon. xo
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Oh my dear friend. i had no idea you were bedridden for this long. I must sound like a whiny ass to you. This is all new to me I guess. Trying so hard to put my mind in Al’s place. Not wanting to hurt his feelings, looking out for his best interest, and yet wanting him to enjoy the freedom he still has. It is hard. After talking to him tonight he is going to try going back to Day Program but he may cut it down to four days so we can go eat out once on the weekends. Pretty good thinking I think. Hugs my friend. You are pretty terrific, I hope you know
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I think he should stay home in bed like at the hospice, since he is feeling better from that and the new medicine. To rest and feel better seems to me to be pretty important now. He was so distressed after having been out. It seems to be a shame to repeat the experience. But I am not there to see the situation. I am praying for you and Al. God bless you and help you in your caregiving decisions.
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I actually do too, but I have to respect his wishes since he can still think for the most part for himself
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You are doing the very best and you do not want him to suffer. It is hard to see someone youlove suffer. Still talking to Al is the best option and see what he wants, he is the one suffering and you need to respect his wishes. You are in my prayers every day!
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thanks Ute. He wants to go back to Day Program and so I let him go today. Will see how he is when he gets home. hugs
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Good, it is more variety for him. !
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I didn’t read the other responses, so i may be saying what has alread been said. I think I would make sure he understands that a desired activity or outing will wear him out and he will feel worse; then I’d pretty much be guided by his choices. It’s a tough place to be, Terry.
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I feel like I have made it so clear, I have turned the topic inside out, but he still wants to go. Now Hospice is telling me they want him to stay home two days a week. It is hard on me because he needs his friends to remain alive in spirit
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I’m sure you have made it clear. It seems to me that you’re between a rock and a hard place, between Al and hospice. They’re trying to keep him comfortable; you’re trying to keep him happy.
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I think you are right. Hospice has their job, and I have mine. hugs
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