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thistlegal

Member
Joined
Nov 21, 2010
Messages
26
Diagnosis
05/2010
Country
CA
State
Ontario
City
Guelph
OMG i just want to curl up in a ball and cry all night.
I got a call from my spouse at work asking me to come home rightaway. Of course I do all in a panic, to come in to find him in tears on the kitchen floor. He couldn't hold himself up during a transfer to the comode, fell to the floor and messed himself.
He was crying,cursing and swearing about how he can't take anymore of this f`ning desease.
Rush trip to the hotel so he can shower( we still don't have our stairlift yet)!
Can't get ahold of his OT she is now on maternity leave, so no help for him tomorrow to transfer to the comode while I`m at work. We have all the papers for the stairlift ready to go but she didn`t pick them up to file them before she left.
I just don`t know how much more we can take!
 
sorry to hear of your plight thistlegal

Have you contacted the mda clinic in toronto to see if there is any help they can give (even temporary help would be good)? I know it is a few miles, but it is not an impossible distance, so it might be worth a try.
 
Have you registered with ALS Ont.? Do you get any help from CCAC or March of Dimes or Red Cross? They might be able to come help with lunch etc. transfering or other needs.

AL.
 
Thanks for the tips all. I will be trying our local hospis tomorrow and maybe Red Cross. I don`t really have a lot of faith in the A.L.S Society so far they haven`t been much help for us. Nothing available to loan us, no funding for a lift apparently our household income is too high. Don`t understand how that works seeing as I`m the only one working, and I`m putting in all the overtime I can to cover the bills and the time off for trips to London for trial and team meetings.
Can you you switch case workers
 
Oh Thistle i'm so sorry... sometimes sitting on the floor crying and swearing is the only appropriate response. Hopefully today will be better.
 
Oh Thistle i'm so sorry... sometimes sitting on the floor crying and swearing is the only appropriate response. Hopefully today will be better.

This is so true! Gave me a little chuckle. We've done this several times before. Once after falling out of bed for the umteenth millionth time. he he.
 
Hi thistlegal. You should be able to request someone else. Do you use CCAC for anything? They can get some loaner stuff.

AL.
 
Thanks to you all for the helpfull tips. Our new OT came today. I made sure I would be home so Danny would honestly tell her about his limitations. The good news is Tracey seems a lot more helpful and eager to get us what we need than the last OT. Having someone come in an hour every morning to help Danny get up, dressed and to the comode...done YEAH! Tracey is calling the ALS society to get us a hospital bed to use in the livingroom till the stairlift comes in. This way Danny can elevate his feet and reduce the swelling and help him sit up in bed. She also thinkd she has one of those rope ladders to help him up himself into a sitting position. We also lowered the legs on the comode a notch, this makes getting in easier and since then no more messes! Yeah!

Does anyone know if there is a maximum number of hours the cargivers from CCAC are aloud to come in for? When I was inquiring what a private company would cost I was shocked. $26/hour min. two hours, if we need to top up on the help this could get really expensive fast.
 
Oh my gosh....I so remember those scary times. I also had several of the fall calls. Two led to emergency room visits before my hubby was officially diagnosed. Allow yourself to cry.....find a place where you can actually scream (that is the car for me). I am sure I look like a lunatic. Hang tough..you are going to have to be strong. Take things one hour...one minute at a time if needed. Take a deep breath..you can do this.
 
CCAC does 14 hours a week Max. Is there a March of Dimes in Guelph? They can give more hours. Red Cross might help as well.

AL.
 
I had a similar experience yesterday, so I know exactly how you feel. Got my hubby up, toileted and fed and had him safely in his computer chair to surf the web. Out I headed to try to make a whirlwind run to Walmart to try to buy at least a couple of Christmas gifts. I got halfway there and my cell phone rings. He is crying and saying he fell out of the chair. Apparently, our sweet little mischievous kitty, Timber, had knocked off the computer mouse and my hubby tried to reach it out of the floor. He is fine except for a few scratches but it is so scary. Now I am afraid to leave him alone at all and of course, he is upset because he messed up my shopping. We have no caseworker or any contact right now so things are so much in limbo. We are waiting to get our first appointment with the ALS clinic a couple of hours away. We too, have stairs in our house. They are coming to put in a chair within the week so hubby is basically floor locked until then as he needs help even getting out of the chair and a buddy walking with the walker to make sure he doesn't fall backwards. I think that is the most difficult part of caregiving is watching our loved ones so frustrated and trying to deal with their life disappearing before their eyes. I am so glad I found this site to hear that we are not alone in what we are dealing with.
 
Hi Catcaniac,

I'm so sorry you guys have this, but have experienced similar things. I've had numerous episodes in my power chair when I fell (leaning over would land my head stuck on my lap), and this is very hard to accept and believe at some times, but your husband needs to decide not to try to retrieve anything when he's in the computer chair. If that means sitting for an hour bored, then that is what's necessary. Hard to do, while simple to know. It is frustrating beyond belief sometimes to stay still and to wait, but it's the only safe thing for him. Hugs to both of you.
 
Back again, Catcaniac, just to say I read another post from you about the swift progression and age of your husband. I am so sorry. This must seem very overwhelming. I'll be praying for you as you both handle this.
Hugs,
Ann
 
Thanks Ann. We are very lucky to have very supportive family on both sides that live close. My husband is an only child so that is good in some ways but bad in others as I am sure it is quite difficult for his mother to handle.
 
No doubt it's terribly hard... as it is for you as well.
 
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