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HeatherFeather

Distinguished member
Joined
Nov 30, 2014
Messages
284
Reason
CALS
Diagnosis
10/2014
Country
CA
State
Quebec
City
Tiny town w/no stoplight!
OMG you guys...I have to tell you that yesterday was such a bad day. I couldn't lift Ron off the lazy boy chair to position him into the commode, he kept falling and I had no strength. We managed and I could not get him off the commode. Finally we used the transfer circle and with all my strength of leaning back, he was able to get up.

I could not stop crying for about an hour. I was in a period of severe distress. I asked him why he is smiling, laughing and joking when we have guests and why he is so miserable and verbally abusive when we are alone. He told me he is not comfortable being alone with me any more. He does not feel secure or safe with me. He is afraid of falling. When we have guests there is usually one man in the house so he knows that he will have strong help.

Last night, getting back into our bed with the high box spring and mattress, was a nightmare. (we returned to our old bedroom with the Queen bed because he found the other double bed was too small - we had moved to the guest room with the double bed because his wheelchair could pass there. In our old room a dresser was in the way. Yesterday, we moved the dresser so that we could return to our old room and his wheelchair could pass through to his side of the bed)

He wanted me to get the circular transfer from the basement - This thing ways a ton ... it's too heavy for me to lift it up the stairs. We managed finally to get him into the higher bed but it was a nightmare. I don't know what to do - now I'm afraid of getting him out of bed and all the other times I have to help lift him. My heart is beating rapidly, I am so stressed this morning.

I guess I just need some comfort from you guys - thanks for being here :cry:
 
Oh sweetie, what a nightmare! You need a lift NOW. This is not safe for either of you. I don't know the Canadian system, perhaps someone from you neck of the woods can weigh in about how to get one quickly. In the meantime, how about a transfer board? Does he have arm strength? Can he slide across the board? Also, are you only moving him to the commode for BMs? A hand held urinal will take care of all other needs without the transfer.

I hate that he's verbally abusive to you--that's not a good sign. Does he have a history of this or is it new?
 
Oh sweetie, what a nightmare! You need a lift NOW. This is not safe for either of you. I don't know the Canadian system, perhaps someone from you neck of the woods can weigh in about how to get one quickly. We have no room in our bedroom for a lift. We know that a hospital bed is needed within a week or two but to more our HUGE bed with its monster headboard, foot and rails we need to dismantle it and clear out one spare room and prop it all up against the wall. Then we'll have place for a lift but for now... We also need the manpower for these changes and have to ask some friends to come over SOON!In the meantime, how about a transfer board? Does he have arm strength? Barely any arm strength and his knees are starting to give way so he's having trouble standing up and moving his feet to get to either the bed, the commode or the wheelchair. The transfer circle works but it's downstairs and for now we are still dealing with two floors with a stair lift between which is also becoming dangerous because there are two steps to get to the lift and I'm having trouble lifting him & his feet enough.Can he slide across the board? Also, are you only moving him to the commode for BMs? Yep - only for BM's A hand held urinal will take care of all other needs without the transfer.

I hate that he's verbally abusive to you--that's not a good sign. Does he have a history of this or is it new? He was always a very demanding guy. He never realized the way he talks to me altho I've mentioned it to him over the years many many times. OK - still not really used to it but MEH... Now he's worse because of his fear of falling - he says I'm not positioning him correctly ... he shrieks at me and this freaks me out. I usually wind up crying or a couple of times I've actually wanted to break things - once I threw a can of hairspray at the wall and dented it. This is NOT ME - I am usually a very calm cool gentle feminine not argumentative woman - I'm not myself and I don't like this 'new me'
I fear for my husband's safety and for my sanity at this point :cry:
 
I do understand how fear can result in screaming--especially while both of you are figuring things out. Antidepressants have leveled out my emotions so that I don't react to things the way I had started to. I wasn't likeing the new me either, but I'm much calmer now and hubby seems to feel better about our future as a result.

A slide board with a draw sheet might work for now. It's what we used when hubby came home from surgery and couldn't stand at all. Are you working with an OT who can demonstrate this?

On the other hand, if he's afraid of you moving him or is unhappy with what you do there are always Depends or some other adult diaper. Maybe give him the option...

Oh the moving furniture...it seems constant. With mom I wound up with one of those monster headboard in my dining room until I was able to snag someone to carry it to the garage. I am fortunate to have storage space if I can get some muscle out here.
 
I am so very sorry. One thing I find is if something needs extra effort early in the day things I could normally do later in the day become more difficult/ impossible
I think you urgently need an ot/ pt home eval but that is not going to happen today so you need a plan for the weekend.
Are his transfer needs predictable? Is there a friend/ neighbor you can ask to come over for that reason until you figure it out? Or a group that can take turns? Whoever is doing transfers a gait belt might help a little.
I am really sorry this is so hard and frightening. Please do not feel guilty you can't do it all. It is no one's fault it just is.
 
i have been going through the bed thing. jane can't lift me up any more. we tried different bed setups it didn't work so well. i have fell a few times trying to get in and out of bed. when i go down i am down and ant getting up, im good if im down. i can wait till someone can help me get up. jane that's another story she goes all nuts on me. she can't wait till the boys come over and if she can't get right hold of them at the time it's 911. not good they want to take me in all the time. omg i just want to get up that's all. i don't want to fall jane don't take it so well she brakes down and cry to. im not going to tried the bed any more till i know i can get up on my own with out falling.

the hard part for me is. i slap next to jane for 29 years. now we sleep apart. she dose set with me time to time but it ant the same. i hope you can get something worked out. i know jane can't lift me but she dose everything else for me and more.
 
oh hunny, I know that awful feeling of desperation and not knowing what to do.
I am in Ontario. I have a Regional Manager for the ALS Canada who I can call anytime. Is there an ALS contact person for Quebec? You really need to get a Hoyer lift ASAP. They are so easy to use and I am sure will give both you and hubby some security.
As for hubby being all smiles when company in over and a grumpy bear when it is just you two, I get the same thing alot of times. I have to tell myself that he is able to be angry/ frustrated/sad with me because he knows that I am not going anywhere, he does not have to but on his brave face for.
One of my friends gave me this advice the other day when I was in tears due to his anger. 'Just be kind.' No matter how angry he is, just be kind. I tried all day yesterday and it actually worked. He was kinder as well. (not always possible, I know, but at leat I know I will have no regrets)
Please get in touch with someone today if possible about getting a lift.
You both need to feel safe.
Hugs,
Cheryl
 
Here is the information I could find. I am not sure if you have it already, if not, I would call as the ALS society has been incredibly helpful to my and my husband.

AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF QUEBEC

Phone: 514 725-2653
Toll free in Quebec: 1 877 725-7725
Fax: 514 725-6184
Email: [email protected]
 
Awe Smoochie, I knew someone up there would have a contact for her!

If the bedroom is too small for a hoyer you'll need a ceiling lift. They can mount to the cieling or can be freetanding. You NEED something!
 
Davbo, please give Jane a hug from me. It's so hard when we cant do for our PALS what they need. You seem so calm about everything--she's lucky in that regard. So when you are stuck on the floor, pillows and a blanket? My honey is having a harder and harder time getting up when he falls. Right now he crawls to some piece of furniture that he can pull himself up on, but those days are quickly coming to an end. At over 200lbs, I can't pick him up either.

Here's what may be a dumb question. When a PALS is on the ground, can a lift be used to get them up? Do they not reel down far enough to reach them on the ground? If not, why don't they make them so that they do?
 
I know people have used a lift to get pals up from floor. Think it is tricky and maybe a touch dangerous. If you are considering it. Please practice on someone else first so you can figure out the best method
 
Your situation is all too common in ALS. The PALS refuses to accept reality and the CALS bears the brunt of all the problems that causes. Time to make some changes and let him rant and swear and get it over with. The chinese water torture of constant anger falling on you is so demoralizing. Ignore him and do what you have to do to be able to continue to care for him.

Get a Hoyer lift immediately. If the ALS Society can't get one to you today or tomorrow, call the nearest medical supply store and explain your immediate need. They will work with you to get one to you ASAP and hold the paperwork until your doctor can call in the prescription for insurance reimbursement next week. Be certain that the sling you order for it is a split leg hygiene sling, not a toileting sling, which is a very misleading name. If he refuses to use the lift, refuse to move him. Another angry rant can be expected but treat it like a temper tantrum from a 2 year old. Walk away. You can't let him bully you now.

Also start the process, prescription and order for an electric hospital bed.

Forget about moving furniture around upstairs. The stair lift has reached the end of its usefulness and you need to think long term now. Contact friends to help you move his bedroom downstairs (dresser and bedside table). They can't read your mind-- you have to ask for help and they will gladly give it. Figure out where you can sleep. You may need to get a twin bed for yourself. (Craig's List for the bed but buy a new mattress.) An accessible bathroom is nice but not necessary. He will simply have to accept bed baths and using a commode.

He doesn't seem to be coping well enough to be reasonable about any of this so the decisions have to be made over his objection. It is the only way you can hope to be able to care for him. It will probably require intervention from a counselor, minister, friend, or strong authority figure to tell him the hard truth that you have to do these things or put him in a nursing home.
 
Yes, a Hoyer can certainly pick up a person from the floor. I have worked for a few years with a young girl who is in a wheelchair and we have a bean bag chair that is on the ground that she loves to lie on. The Hoyer gets her down there and up again.

I have also seen Hoyer lifts on Kijiji so you may want to look there as well.
hugs,
Cheryl

Please HeatherFeather, let us know if you make any head way today.
 
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