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lovemydad

New member
Joined
May 6, 2010
Messages
7
Reason
Loved one DX
Diagnosis
04/2009
Country
US
State
MD
City
Lusby
Hi,
This is my first time posting, but i have been following many of the conversations (which have been very helpful!) as my father was diagnosed with ALS in April 2009. I am an only child and live about 6 hours away from my parents which is extremely difficult. I travel home on weekends about twice a month to help out and be there as much as possible. I worry about my mother with care-giver burnout and i think reality is finally setting in for me as my father progresses and i am trying to deal with all the emotions that come with this.

My reason for posting today....my parents obviously need to find a 1 level home. They had a chair lift installed in their current 2-story home for my dad, but we all know time is limited for that to be feasible. My parents have been looking for a decent home within their price range since he was diagnosed, but have found nothing so far. Now we are wondering if it would be possible to have a bathroom built on the first floor (there already is a bedroom), and have other handicap accessible rennovations done. It's a small home with not alot of leeway for expansion.....but would like to look into this anyway.
Im wondering are there any groups out there that help with home repairs (in any way) for people with disabilities ? Basically, any input, advice, suggestions, thoughts would be helpful. We have a call into our local MDA/ALS office (our rep is out for a couple days) and i'm trying to do some research online.
Thank you all so much in advance for your time and help.
 
I know that the local Contractors Association have taken on similar projects of home rennovation for wounded vets and families with a child with disabilities. You might give a contractor a call and get the name and number for your local association. Worth checking out.

Good luck.

Diane
 
I think you are on the right track contacting your local MDA chapter. Recently when my mother was discharged form the hospital, the discharge nurse made sure everything was set up at home for her and asked if we needed home health aides. Maybe if you contacted someone like that at your local hospital they could help you. I hope you find some help.

Dana
 
Sounds like we are in the same boat and it's sinking. In this marketselling and buying a house, while a fix fo all those stairs----is a long shot.
 
If you make a new bathroom, I believe the easiest format to use, and perhaps least expensive is to make the floor entirely sealed, sloped for a drain, perhaps near one corner, and the toilet, ADA height not too far away from the shower (far enough to stay dry, however), and also not "too close" to a wall for future transferring. Just placing a removable screen between the two gives the illusion of privacy but would be easy to remove. Away from the showering would be the vanity/sink... but the surrounding surface of a vanity would make it easier to use. Lots of electric outlets, including one next to the back of the toilet if he wants a bidet seat. Cheap stacking drawers could hold items or...a low office credenza-- shelf with drawers would provide more counter space, so to speak.

Obviously, the wider the doors, the better... maybe cutting off a corner of the room would make that possible. I would try hard to remodel the present house and get that bathroom space made if at all possible.
 
Ann-

You mean like this- (were you peeking into my bathroom? LOL):
 

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Oh mare, beautiful shower! Lovemydad welcome to our forum hun. My dad has ALS as well. I know that the whole selling/moving into another place is what a lot of people have to do, but it is soooooooooo stressful. If you can avoid it at all by renovating that is what I would definitely do. Stress + ALS = bad things. If you ever want to talk hun, I am here for ya.
Hugs, Kari
 
Marianne, you've got it! That's what Phil said he'd do with our house... but he'd already adapted this one when we were moved in. Doggone. I do wish I'd known what was coming at me in that sense a whole lot earlier....could have just camped out here while he did the renovations....and now that I'm gone with half our stuff, he's working like crazy on that house... asking my opinion about tile color. This does not make sense, except it's his way of dealing with life... work.

Lovemydad, listen to Kari, honey, lol. Staying in her own home will (I assume a lot here, forgive me) probably be a comfort for your Mom, if not your Dad. My two cents.
 
THank you all so much for your inputs and advice and caring words. If it turns out to be feasible to reonnovate, i think it would be the best thhng for them too. They have lived in that house for 25 years and I think moving and changing is really overwhelming for them. I was able to find some good local resources through the ALS Association and they are having some people come assess the house. I never thought about the "roll-in-shower" -- I will definately be passing all this on to my parents. I feel so helpless. It seems everyday there is a new machine he has to use or something new happening and/or something new to think about. He seems to be hoarse (a froggy-like-sound) to his voice alot more lately and I'm concerned about that. Anyway, this is the first chance I've been able to talk to anyone who gets it -- since dont live in town with my parents I dont get to go to the support groups and stuff with my dad. This really means alot to me, thank you all very much.
 
Hi lovemydad,
Welcome to the forum. My husband passed from ALS last September, and we had to move to a new home, as we were not able to convert the one we were in. After finding a home that would work, we still had the problem of adding a roll in shower. We received a check for $3500 from an organization called Project Main Street. If your parents are in need of financial assistance due to ALS, this organization as well as ALSGA are wonderful.
 
Linda,
Thank you so much for that information! I had done some research trying to find organziations just like these, and was unsuccessul. I sent an email to project main street this morning. All of you on this forum are such a blessing, I am so thankful to have found you.
 
So sorry to hear about your dad, my father-in-law "Dad" he soon to be in the same boat and was glad to also see all this information. Welcome to the forum. Hope everything works out with your renovation project. My prayers are with you and your family.
 
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