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Yes, they do but since my DH still has some use of his legs----his body is weak though, and his arms and hands still work a bit he just wants to go out to the ALS clinic to see all the people we have been around through this entire ordeal--I think that means a lot to him. He would also love to see his personal physician which the Hospice doctor said was fine but again getting to and from with a vent is not easy. My girlfriend from the clinic takes her husband everywhere, he is on a vent, totally paralyzed not even being able to close his eyes and is tube fed-- they go to family get-togethers and short vacations sports advents etc.. He still gets the sun on his face, sees the land around him--you know--living....laying in a bed 24/7 is hardly living. But it is what it is I suppose. When he made this choice for a ventilator he had no idea he was going to be stuck in a bed from now on. An he shouldn't be. As far as Hospice letting me go while they are here--not with him on a ventilator. It's very hard to find anyone that will honestly. As far as his son goes--I think he is planning on his father passing away and no need for a van--just my feelings. I have very little feelings for his son or his wife....obviously--they are here I am a online with my real friends! The people that really care--very very sad.
Last edited by cynwldkat; 08-17-2014 at 11:40 AM..
Good morning. Already been long and busy but I think this is what being a caregiver is. Our biggest problem now is communication. DH's hands are really losing a lot of strength and his fingers are starting to curl up. His handwriting is getting impossible to read now and I can see his frustration when I don't understand what he is trying to say. I feel it too.... I get upset and am not very nice sometimes and do not like being like that so we really need that computer that you use your eyes to communicate with but not sure if that is supplied by the ALS clinic or if they even offer grants for that. DH said he's feeling weaker every day--of course he is because I can't even get him out of bed right now. Maybe when we get that Hoyer lift Hospice said they'd bring I will be able to get him into his wheelchair and better yet, God willing, his son will come through with a van. I'm looking every chance I get for anything but still I need to sell my truck first---just patience. When I see how my DH is feeling patience is difficult. But so far things have worked out so I'll keep my fingers crossed. I did good today actually---I changed his whole bed with him in it by myself. A lot of work but it's done! Now to put fresh equipment on and give him his second dose of morning medications. The medications scare me so much--I am so afraid of doing something wrong. I suppose that is normal. Each Doctor has him taking different medications so that gets confusing too. I read up on them all trying to understand them better but they don't make understanding it easy. Guess I'm not a pharmacist..........I can only do my best. I think I am going to train the girl next door, the one who's father was just recently diagnosed with ALS about the ventilator so she can stay with DH and I can get out for an hour now and again if nothing more then to take my trash to the dump and maybe stop and get some critter food! She already offered and that's not easy finding anyone willing to do that job! She is my little angel! The only other way I could get away would be to hire a registered nurse trained with this ventilator and that costs more then I could ever afford. No one else will even consider staying with him. I understand.....you are holding a persons life in your hands. I know--I feel it constantly. God forbid the day he passes----I pray I don't feel guilt for doing something wrong. That is why I work so hard at learning and reading and doing things right.
Oh my goodness Cyn, you've given and continue to give your utmost and more to the care of your DH, as well as everything else you have to do. There's nothing, nor will there ever be anything for you to feel guilty for. On the contrary, if you can, just tuck the thought into your heart for safekeeping that you have gone the distance, you've stayed with your DH no matter what, and you have done exceedingly well. He will know that too, ( even if he's cantankerous and demanding), and he will know that you did it out of your love for him.
You continue to amaze me, your care for your DH has reached the level of a full time skilled nursing position, it seems, and you take it on with no hesitation. Lots of folks couldn't or wouldn't do that, but there you are, learning and picking it up as you go. And that's in addition to your other household and business responsibilities.
I think getting your neighbor to stay with your DH at some times is a great idea- it'd be a great help in your getting some other things done, but it would also be great if you had a little "me" time, just to unwind and relax a little. Perhaps when the Hospice folks come, that might be possible?
Cyn, take care of yourself, and know, as always, that you're in our thoughts and prayers....
DH just wrote that it would only take 7 minutes to die if he were unplugged to his son---why would that even be a conversation? Because he feels guilty for being sick to his son---that is stupid and out of line. I am so happy that his son is the last in their gene line!
So my DH's dearest friend that I just called told me I was fine and to get out of the house and be with my critters--he knows me--he know my DH and he cares. Got to love him! So I'm going out to baby my Basset Hound!
DH just wrote that it would only take 7 minutes to die if he were unplugged to his son---why would that even be a conversation? Because he feels guilty for being sick to his son---that is stupid and out of line. I am so happy that his son is the last in their gene line!
OMG, Cyn, also sounds like your DH's son also came out of the slimy end of the gene pool!
Cyn, you are going through so much and I can feel the ache, even though sitting miles away. Of course your DH’s son doesn’t want to listen to anything you have to say. Listening to you would require him to offer help, which he is completely incapable of. Did he even offer that now that he is there, you can go out for an hour or so? He didn’t, did he? God is great Cyn, what goes around will come around; in this lifetime. You are accumulating lots of blessings while he is accumulating, well he is accumulating something. I am big believer of karma and let me assure you, you are an amazing amazing person.
We're waiting for the sweetpea's room to be ready... new round of chemo this week...
And guess what... I know I should have told you before, but I wanted it to be a surprise... This round will be THE LAST!
We're waiting for the sweetpea's room to be ready... new round of chemo this week...
And guess what... I know I should have told you before, but I wanted it to be a surprise... This round will be THE LAST!
Have a great day y'all!
Dieu merci
OMG What great news Sudcaro. I remember my last radiation treatment....."I got to ring the bell" to signify that I had completed my treatment.
Of course then you have to pray and hope and wait that there is no remission. I will be praying right along with you!
Thank God you were able to complete the treatments while still here in America; it would have been so hard to return home in the midst of treatment.
We're waiting for the sweetpea's room to be ready... new round of chemo this week...
And guess what... I know I should have told you before, but I wanted it to be a surprise... This round will be THE LAST!
Have a great day y'all!
Hooray for sweetpea and her parents. That is fabulous news now we will pray she stays in remission this time around.
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An he shouldn't be. As far as Hospice letting me go while they are here--not with him on a ventilator. It's very hard to find anyone that will honestly. As far as his son goes--I think he is planning on his father passing away and no need for a van--just my feelings. I have very little feelings for his son or his wife....obviously--they are here I am a online with my real friends! The people that really care--very very sad.
