Stress

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joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Our home has stairs everywhere, a few going up to our bedroom, a few going down to the den. decks with stairs to the front door and back. Bruce so far is still walking, but for how long who knows. Guy from church just left shaking his head, and said it was way too much for him to do, we would need a contractor to look at it. I cried...HELLO we don't have the money to do anything, Bruce don't understand because of the demensia, I feel like the weight of the world is on my shoulders. I have to work to help pay the bills,try to figure out HOW to get the house livable for him, how to pay the bills, and then when things do get bad..how am I going to afford to get someone to stay with him while I work. I can't quit, we can't live on his check alone.
 
Dear Joni,

You have been helping me so now I will help you or try.

Do you go to church? If so, go to the Minister and explain the situation. Our church has a fund to help families in time of need. There also may be some men from the church with know how and the ability to build those ramps. Also, we have an organization called Salkahatchie and they get kids from local churches together, pair them up with adults and come in free of charge. They usually get local stores to donate the materials.

If this doesn't work, we have a local drug rehab center, who gave us 2 men and we paid minimum wage to move us from one house to the other. And one of the guys was a master plumber, so he was able to hook all the plumbing necessities up for us.

I hope you can find somebody to help you!

Mending my broken heart with your help,

Kimberly
 
Joni, I am so sorry life is so incredibly difficult for you right now. My Prayers are with you sweets, May HIS Peace surround you and the Help you need come your way. Great Big HUGS
 
Can you call your alsa rep? Maybe there is a fund to help with renovations or they could steer you in the right direction.
PM me if you need to talk :)
Susan
 
I agree call the ALS Association in your area. We have a social worker through them. It is a huge help for resources, information, etc... They are always there for us!
 
Another source: check with your county to see if they have any kind of financial assistance for ADA upgrades to your home. (A contractor i was working with suggested this one...) And if you get to the point you need to keep him from going certain places, I have some pretty good ideas on how to block stairways.
 
Joni, is there a loan program in your state to help make your home accessible? There's one here in Mass. but I don't know if it's a state or federal program. It offers up to $30K in a no or low-interest loan to make a home accessible, and there's is no payment until you sell your house. Do you have a social worker through the clinic? They should know about it. I've thought about using it for me, but I can't afford my mortgage to begin with, so am looking to downsize, and then possibly going this route.
 
Hi Joni.....I have no tips, but I wanted to let you know that I am walking in your shoes; trying to work full-time, arrange a house into a workable situation on a no-budget, etc. The suggestions above are very valuable and I hope some work for you. I plan to explore a few. Here's the deal, though, we're going to do it! We're going to get through this and do it well. I'm not sure how, yet, but we will.
 
Oh Joni! I don't have any suitable ideas. Our house is a tri-level and we have had to make some changes. My brother was able to build a ramp for us to get my husband from the family room up the three stairs to the kitchen area. It was relatively cheap to do, of course, it is not permanent and probably not ADA compliant. But it works. We are moving our bedroom downstairs in the near future. Right now I help hubby navigate the stairs at night.

Good luck and keep us posted on what you find out.
Love and light
Meg
 
Oh Joni, wishing I had answers for you. My pals had a beautiful home, most of which was off limits post als.
Would a portable ramp make any difference in those places where there are just a few steps. They are a little heavy to manoever, especially the bigger ones, but could work in place of something more expensive.
 
Joni,
I am so sorry you are doing this all on your own. I too have to work but have family members to help.

We just came from the als clinic and they offered us a lot of help with equipment and will put us on their wait list for respite care 12 hrs / month

Doesn't sound like much but since Karl's Medicare & SSDI doesn't start until Feb 2012.. it will help a lot!

Do get in touch with your local ALS chapter.

Saying prayers for you!
 
I have been in touch with my local Als chapter. They can help some with equipment, but in Alabama, no respite care that I know of, also she said there just isn't enough funding to help with any renovations. waiting to here back from a contractor to see what he suggests, then I may need our friend Stu.. I am lost as to what to do anymore. Thanks all of you for the suggestions.
 
Joni, do you have a church?
 
Yes, but they have not offered much, and they know what is going on...
 
You can also try Stu with the ALS Guardian Angels. I've seen posts on here where they have helped other forum families. Our friends did a fundraiser that raised over $10,000. Maybe your family and/or friends/church can do something like that. We sold raffle tickets for a cruise for 2 at $20 a raffle ticket. It was very successful.

Hang in there. Take one day at a time and and tackle one thing at a time or else you will be too overwhelmed.

Take care.
 
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