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brooksea

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I couldn't believe my son felt compelled to say that to me!

My husband tried to get out of bed by himself last night. My son and I were watching a show in the LR and the bedroom door is right behind the LR. He never called out for help and the TV was not loud. The door was closed so he could sleep without being disturbed. We heard a humongous noise and both ran in to see him moaning and groaning in the corner about 6 feet from the bed with furniture askew.

I tried to help him up, but I just couldn't get him out of the corner. My son was frozen. I yelled at him to come help and that was very wrong of me. He tried, but we could not get him up. I told my son to get the phone and call 911, but my husband pitched a fit. I told him he was going to get up or it was 911. So if I couldn't lift him, he would be seeing paramedics.

I was finally able to maneuver him back to the bed where there is a bit of area rug sticking out from under the bed and he could use that as traction to help me get him up. He then was able to wobble to the bathroom and just stood there...and did nothing! :?: I asked him if he had to go to the bathroom and he said, "Not anymore."

My husband has scrapes on his back and now I'm worried they will turn into pressure sores like the one on his shoulder!

I did not realize how much seeing his naked daddy on the floor, in the corner had affected my son. He came to me with a "formal apology." He said, "Mom, I would like to apologize for last night. I haven't been taught how to pick someone up." Before he could finish, I told him it was OK and he shouldn't worry about it and that it wasn't his responsibility.

I recognize my son was scared and I felt terrible that he wanted to apologize for something he could not help! :(
 
He's compassionate. That was how you both raised him, I'm sure of that. He seems like a really great kid.
Sorry for the fall, I hope the scrapes heal.
 
Poor C.J. and poor son. What a huge responsibility you both have. C.J., you also have nothing to feel guilty about Sweet One. Every day we try and do the best we can. Sometimes our best is better than other times, granted. But it's our best at that given moment. I admire you and your son, and your husband very much. I realize how hard it must be for you.
Much love and admiration for you,
Marta
 
So sorry this has happened. Sounds like your son is wonderful. You did the very best you could considering the circumstances. I applaud you on a job well done. Hoping his wounds heal quickly. HUGS
 
I'm so sorry, CJ. We had the lift waiting in the wings for just such an occassion
 
Thank you all. My husband doesn't seem to be doing well, but one doesn't know with ALS.

Miss, we have the hoyer lift. My brother came over today so we could test it. It seems we may have a couple of parts missing that you attach the sling to. My brother picked me up and I was so scrunched up in the sling. I picked him up and he was scratching his head afterwards on the logistics. I had downloaded the instructions and we are definitely missing something.

And, besides, how the hell do you get the sling around and underneath when they fall, then hook everything up? Seems like it should be simpler.
 
When they fall, you roll the sling halfway, turn them on their side, tuck the rolled side under them as much as you can, turn them to the other side and unroll that side. It sounds much easier than it is. My husband would not allow the thing near him except when he fell. Then it was the only way to get him up.

Also I am sorry for what your son went through last night. You were doing the best you could and thinking of your husband. Your reaction was normal. I am also sure that you have handled his apology well too.
 
CJ glad yall could get him up, I can't imagine how tuff all this is on your son, he will be one little strong boy one day for all he is having to go through, and we know you are strong! Anybody that hangs out a van trying to get home, gets my vote for strong!
 
CJ,
Using the Hoyer can be a scary experience for the lifter and liftee. Even as an RN I found that daily practice was the only way to build confidence. I'm so sorry you didn't have the luxury of practicing with the Hoyer before you guys were in crisis mode. If you can get him to cooperate, try moving him from the bed to a chair and back a few times. Enlist the help of family volunteers first till you guys get the hang of it. Even simulate a few falls with your volunteers. Maybe someone from your Agency has some experience and could come out to give you some tips as you try it out. It will get easier over time.
God bless you and your family.
Deb
 
I hate to suggest it--but if he's dealing with FTD and isn't being reasonable about staying in bed--can you get rails for the bed? As a last resort, again, I hesitate to suggest it, but perhaps even a vest restraint (they are made so one can sit and turn from side to side, but can't get "out" of bed) to prevent him from trying to get up on his own if he won't call and ask for assistance when he needs it. If he's able to transfer, you could put a bedside commode right next to the bed--with a slide board. Of course, that won't work if he won't use it.

Do you have a baby monitor in the room? You might want to consider one. I'm assuming he already has a urinal by the bed.
 
I may have to get rails anyway. The pressure mattress has added a good 3 inches to the height of the bed and a sheepskin will probably add about an inch.

I tried to get him to pee into the men's plastic urinal container at 4AM the other night. He refused and insisted on getting up to go to the bathroom. You know, years ago I took care of him for almost a solid year where he was unable to walk due to fractured limbs. He had no problem using the urinal then. Go figure!

I've been trying to decide on whether to get a baby monitor or alarm...maybe both at this point.
 
I'd advise both.
 
Brooksea

I'm so sorry. What a scary time for you and your son.

My husband gets like that when he is on pain medication and I can't reason with him. The PT put him in the sling this afternoon from his power chair and we practiced putting him into bed. I know I will have to use it soon all the time. Using the transfer board is coming to an end for us and he can't stand any more.

Thinking of you and your family. ES
 
If He won't do it for his own safety, try reminding him that using the urinal is for YOUR safety as well. Remind him that at 0430 YOU are tired and it would really help YOU. Mom has some Dementia associated with Parkinson's and sometimes this approach helps with her. The baby monitor has been a Godsend. Hospice is beginning to think about getting us a chair or bedalarm for her as well.
Good luck!
Deb
 
Deb, he doesn't seem to care about my "safety." I've tried that approach. I think he has a bit of dementia and is kinda like a spoiled brat right now. I don't know how else to describe it.

Thank you, all.

Tonight I had to put him in bed seven times within a 2 1/2 hour time span. He fell out of bed trying to get up from bed, 3 times. I had to readjust the mattresses and sheets several times, as they were pulled off from him thrashing and trying to get off the bed. He won't listen to me.

Once again, I was trying to tell my son goodnight and my husband gets up. I was so angry. Husband tried getting in bed and fell. I told him I couldn't get him up. He was able to get up halfway and I then helped him. Then I started to put the BiPap on and he told me he wasn't wearing the mask he wore last night. HELLO! I looked for the mask he wanted in the bag that I have all of them stored in. He can't seem to tell me ahead of time about what he wants and I certainly can't understand him.

I hate that I'm getting so angry with him and I know he is angry with me!
 
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