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Yes elston. We have been blessed. Our respiratory therapist told me in many counties Hospice in NC will not take on a person on a ventilator and was quite surprised--she said we were blessed! We are.....it's finally quiet here today and yet I feel like I am running a race--trying to do everything. I need to slow down and take it one thing at a time. DH is still wanting me to do 5 things at once--I need to leave the room at times..just exhausting. Then the things that have to be done--like cleaning his vent etc daily requires so much time--but I'm sure once I get it figured out better things will be much easier.
Yes elston. We have been blessed. Our respiratory therapist told me in many counties Hospice in NC will not take on a person on a ventilator and was quite surprised--she said we were blessed! We are.....it's finally quiet here today and yet I feel like I am running a race--trying to do everything. I need to slow down and take it one thing at a time. DH is still wanting me to do 5 things at once--I need to leave the room at times..just exhausting. Then the things that have to be done--like cleaning his vent etc daily requires so much time--but I'm sure once I get it figured out better things will be much easier.
Remember...."Slow and Steady Wins the Race"......and YES! If DH's demands and expectations are excessive....tell him you love him but have to go do something else right now and WALK ON OUT OF THERE".
Remember...."Slow and Steady Wins the Race"......and YES! If DH's demands and expectations are excessive....tell him you love him but have to go do something else right now and WALK ON OUT OF THERE".
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.
Sweetie, I can assure you that you will not need to feel guilt about anything the day your husband will go meet the Lord. Because you are doing an incredible job! Don't ever feel you are not doing enough or are doing things wrong.
Big hugs.
Thank you Sudcaro---that means the world to me.
So guess what?? DH's son called and is coming for a visit and actually asked if I need anything..at first I said we are fine and then I realized there are things I do need and yes it may only be a few items but they are necessities so he said he would stop and get them. Wouldn't it be wonderful if he drove up in a van? I have a good imagination but I can dream! At least he is stopping by to visit!
First off cyn what a blessing you are to your neighbor girl sharing what you know for her to be more prepared with her father.
Second God & a bunch of us here know you are doing the best you can not many folks would have been able to go this long solo like you have.
Third can Amber or your DS contact DH's DS to see about the truck & van? I think if he knew the expense it is going to be using an ambulance every time you need to transport DH that should light a fire under his rear end. Or since you can't transport him DH will go without some care he needs if his DS has any compassion at all for his dad he'll get this vehicle thing done. Or if he is the hard a** he seems to be through your posts he should tell you he's keeping the truck for himself. That would be wrong but you wouldn't have use so much energy wondering about the truck & van.
Fourth while hospice is in your home can't you go do errands then?
Finally, although this is never lastly, trust in the Lord with all your heart lean not on your own understanding. In all of your ways acknowledge Him and he will make your path straight. Proverbs 3:5-6
I was dreaming thinking his son was possibly bringing the van--what a laugh. He brought a small bag of items which I do appreciate--trash bags, pill crusher, small can of coffee and cat litter. Very nice for him to bring that. I was explaining all that is happening with his father and how much he needs to get out and his son asked that I stop as I am over whelming him with all my talking plus he is trying to watch the car race on tv. Really hurt my feelings but what's new? That is what he is like. He just does not want to hear it. I have no other person to talk to and I really thought he might be interested. His wife kept giving me these looks like you knew this was going to happen and shrugging her shoulders. I need that. Not a good visit but nothing new. Very sad people.
Cyn.........my wife was paralysed and bedridden the last 4 months.
I hate to ask, but if you have Hospice...where... does your husband need to be going that would require a van ?
Doesn't the Hospice RN take care of his health needs right in your home ?
( just curious )
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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.
That would be wrong but you wouldn't have use so much energy wondering about the truck & van. 
