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A very long night. I think DH sleeps to much during the day and at night he is awake---very difficult. He now wants to be moved to the den--my fist idea because the tv and computers are all in there. I put in a request to have the bed moved but will have to pay for it but it will be worth it. He is going crazy in the small bedroom. I suppose I will just throw something on the floor for now and sleep near him. I have one of those sponge toppers on my bed so maybe I'll just put that on the floor and put it in our room at night! We'll see. I did manage to change over the ventilator this morning--scary to say the least and it did take a lot of doing but now it appears to be fine. Whew! On with the day now.
A very long night. I think DH sleeps to much during the day and at night he is awake---very difficult. He now wants to be moved to the den--my fist idea because the tv and computers are all in there. I put in a request to have the bed moved but will have to pay for it but it will be worth it. He is going crazy in the small bedroom. I suppose I will just throw something on the floor for now and sleep near him. I have one of those sponge toppers on my bed so maybe I'll just put that on the floor and put it in our room at night! We'll see. I did manage to change over the ventilator this morning--scary to say the least and it did take a lot of doing but now it appears to be fine. Whew! On with the day now.
I can tell you that if that topper is memory foam (depending on how thick it is, I guess), it's pretty comfortable to sleep on when you put it on the floor. If it isn't, maybe an air mattress under it would make it a little softer if you needed that. I had an arrangement for a while involving two memory foam mattresses on top of each other on the floor of our guestroom/my office, and they were very comfortable, even on a ceramic tile floor.
Sounds like your DH's bed in the den with the TV and computers is a good idea- could keep him occupied whenever he feels like using them.
Congratulations on successfully navigating the ventilator- I'm sure that was scary, but like everything else you've tackled and prevailed, hopefully the ventilator will be a routine item you can handle well before very long. I'll tell you, you are a brave, resourceful, dedicated lady!
Hope your day is a good one, thoughts and prayers for both you and DH!
Good Morning cyn and friends. I am hoping that today is easier and that solutions begin to address all the issues and mishaps associated with DH's transition home. Grrrrrrrrrrrrrrrr!
Cyn, I am so sorry to hear that home coming didnt go well. You sound so exhausted. Hugs to you. I can only imagine what it must be for you right now. Wish there is something I could do.
So here we go--another saga...I do pretty well at moving DH to den in wheelchair--really proud of myself actually--short lived..ugh..I forgot to fasten him in and he slipped out. It was a gentle slide but it did scare him and I could not pick him back up so I had to call 911. They were so caring a wonderful. They did decide it best to have him checked out as he was having a panic attack and wanted to make sure his heart was okay. So another trip to the ER--again--but we were home by evening this time. I now realize I have to put my foot down and not do things he just feels he wants and thinks I am able to do. I know he wanted to watch the silly car race and that is what it was all about. I won't be talked into anything again unless I feel comfortable about it. Our dear friend who is a nurse we met at the rehab stopped by today and said DH is going downhill fast and she can see it. So I may have to make a tough decision to get Hospice even though he is not really wanting it. It is as much for me now as him. ALS is taking it's miserable course and faster then before. I am broken but trying to be strong about this and doing what needs to be done. I want him comfortable and me not killing myself trying to do things I cannot do. Very very hard for me but I will just cuddle a lot with him and let him him know I do love him! We weill be able to remain at home and still get comfort care. At this point that is what matters most.
So here we go--another saga...I do pretty well at moving DH to den in wheelchair--really proud of myself actually--short lived..ugh..I forgot to fasten him in and he slipped out. It was a gentle slide but it did scare him and I could not pick him back up so I had to call 911. They were so caring a wonderful. They did decide it best to have him checked out as he was having a panic attack and wanted to make sure his heart was okay. So another trip to the ER--again--but we were home by evening this time. I now realize I have to put my foot down and not do things he just feels he wants and thinks I am able to do. I know he wanted to watch the silly car race and that is what it was all about. I won't be talked into anything again unless I feel comfortable about it. Our dear friend who is a nurse we met at the rehab stopped by today and said DH is going downhill fast and she can see it. So I may have to make a tough decision to get Hospice even though he is not really wanting it. It is as much for me now as him. ALS is taking it's miserable course and faster then before. I am broken but trying to be strong about this and doing what needs to be done. I want him comfortable and me not killing myself trying to do things I cannot do. Very very hard for me but I will just cuddle a lot with him and let him him know I do love him! We weill be able to remain at home and still get comfort care. At this point that is what matters most.
Cyn.....you really seem to have figured out some of the important dynamics to provide DH the maximum and best home care possible.....the word possible is important....it is not possible for you to be a two or three person team in lifting and transferring him and responding to requests or demands that don't take your capacity/capability into consideration.
You really need to claim your own best judgement and then "stand fast".
So here we go--another saga...I do pretty well at moving DH to den in wheelchair--really proud of myself actually--short lived..ugh..I forgot to fasten him in and he slipped out. It was a gentle slide but it did scare him and I could not pick him back up so I had to call 911. They were so caring a wonderful. They did decide it best to have him checked out as he was having a panic attack and wanted to make sure his heart was okay. So another trip to the ER--again--but we were home by evening this time. I now realize I have to put my foot down and not do things he just feels he wants and thinks I am able to do. I know he wanted to watch the silly car race and that is what it was all about. I won't be talked into anything again unless I feel comfortable about it. Our dear friend who is a nurse we met at the rehab stopped by today and said DH is going downhill fast and she can see it. So I may have to make a tough decision to get Hospice even though he is not really wanting it. It is as much for me now as him. ALS is taking it's miserable course and faster then before. I am broken but trying to be strong about this and doing what needs to be done. I want him comfortable and me not killing myself trying to do things I cannot do. Very very hard for me but I will just cuddle a lot with him and let him him know I do love him! We weill be able to remain at home and still get comfort care. At this point that is what matters most.
Hospice will be a great reliever of physical stress and mental stress for you.
I was my wife's fulltime caregiver but needed the support and help of Hospice the last 4 months when my wife became bedridden and paralyzed (ALS)
I was entering " uncharted waters" the last 4 months and Hospice provided help and training and a boost to my confidence to continue until the end.
Hi cyn and all caregivers & supporters/encouragers~~ been offline with a computer virus just trying to catch up now.
[b]cyn it is very smart of you to know your limits if you get hurt DH has to realize you would be of NO help to him then. I pray hospice can get set up soon & then you both will see how much help it is to all of you. So sorry to have missed Amber's visit but I sure held y'all in my heart knowing she was there.
Its alright whatever you can do when you can do it nothing else matters in the big scheme of things. You are doing your very best for DH & critters plus handling all the eBay & your property mostly alone now I think you are doing terrific. Chin up there are an awful lot of supporters here to lift you even on days that feel so heavy you don't think you can take another step. Step on sister.
Cyn, you are doing everything you can for him to be fine and comfortable, you love him so much we can feel it in your posts. Do what you feel will be best for both of you. Right now your husband only see things through his own lens, not through yours. You know all the needs he has, but also yours and those of the household. So do what has to be done, even if it's tough.
Big hugs.
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but I sure held y'all in my heart knowing she was there. 
Chin up there are an awful lot of supporters here to lift you even on days that feel so heavy you don't think you can take another step. Step on sister. 
