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myooshka

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I am not diagnosed yet but it's only a matter of time. I realize some peole are retired so one a loved one becomes sick they may be more financially secure. We made the mistake of not having disability insurance on our mortage. I was caring for my mother at the time I got sick so do not have disability although there is cpp in Canada. When the spouce has to quit to care for their partner how do people live? We are just 30 with a new baby, new house, I fear we will have to sell our home and lose everything. Just curious how people get through these times financially
 

brooksea

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This is an excellent question of which I have yet to find an answer. Sorry!:confused:
 

CindyM

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My sense is that the answers differ from country to country and in the US it sometimes even makes a difference which state you live in. I think the first step is to find out exactly what you are or will be eligible for. If you find out that you will get help with food, for example, then at least you know the money you now spend on groceries can be put towards the mortgage. Ditto for transportation costs. In my state, I would be given a grant to hire help, so I could pay my hubby (God help us all) to take care of me and that, along with his retirement benefits, would become his income. (I will get disability income.)

Course I know I will need to fire his you-know-what after about two days of lying starved and thirsty while waiting for the game to get over on TV, so in reality we all know he will have to remain at work and I will hire somebody who is up to the job. But you get the idea.
 

paula-jane

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Hi,

My mum lives in Toronto; she has ALS. I have power of attorney and manage her finances. She had disability on her loans/credit cards and mortgage.. but no life insurance. If you have life insurance, have a professional read your policy to determine what their definitions of a disability is and find out if you can have home care covered or supplemented through your insurance. This would allow the other spouse to continue working. The CCAC can offer information on your options and what is needed to help you secure some funded home care etc... This all depends on the official diagnosis etc... The CCAC is the first place to start asking questions. If indeed there is a diagnosis of ALS, the ALS society in your area would be able to give you information, help and support.
 

CindyM

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Good point, Paula Jane. No sense crossing bridges before we get to them. Just in case, though, I occasionally remind my DH that the day might come when he will need to rise off the sofa. LOL. :-D
 

myooshka

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I'm not crossing bridges before I get to them the time is now for me to start planning, my husband has to quit his job to work closer to home. I f I waited on these dr.'s to tell me yes mya something is wrong I could wait forever. I am going by my body, the fact I am finding difficult to swallow, my hands are disfigured, and my muscles are going like crazy off my whole body. I have to plan based on my situation, not waiting for I neuro to say ok your in bad shape and wait till the last minute so my family is in a jam. I have been going downhill for 16 months, so planning for my family is the responsible thing to do.
 

CindyM

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Yes and you are right, also. My other favorite saying is to plan for the worst and hope for the best. We each have to do what seems right because as you said, we know our bodies better than the doctors because we live in them. Cordially, Cindy
 

myooshka

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yes I agree cindy, I hope for the best everyday, I am just dealing with reality and my body is saying to me whoa sister you need some help.:-D
 

CindyM

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I am sorry, Myooshka, I hope you get answers soon and I hope they are good ones. cordially, Cindy
 
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paula-jane

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I totally agree... you have to anticipate where this disease (or any other) will take you and be proactive the entire way. Being prepared is a necessity. Unfortunately, there are some resources that are not available without a diagnosis and that is totally frustrating.
 

Citlalli

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Hi,

Living in Mexico and having no social security or insurance of any kind, for the last 2 years (of 6) we had to rely on our families to help financially, I worked all the time that I could until it was no longer possible (in something part time, close to home and totally unrelated to my profession) . Somehow we always had whatever we needed. On 2 occasions we had huge fundraisers to get Andres a special computer like Stephen Hawkings' and the other to get him a Van, a tilt and recline wheelchair and a special driving system with sensors so he could drive it using his head (Magitek). The response was just amazing!

What I am trying to say is that one of the great lessons for us was learning to ask for what we needed and being open to receiving it. Of course we have a great family and community, but the point is that there is something very humbling and magical in opening yourself to ask for what you need, it is an opening of the heart too. You let go of the pretense, so common in western societies, that we are independent of each other and allow yourself to become open and vulnerable, when you do that you open the space for the same open heart and generosity to manifest in others. Many times the most important thing that came out was not the material thing itself but what actually happened when we asked.

Trust that you will not be given something you can't handle.
 

myooshka

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Thanks you realy have a way with words. I try not to worry just take it one day at a time. Getting a diagnosis will help, I would love not to have a diagnosis but I am living in reality. People still don't really think I am that ill, because I can still walk talk and people are still telling me I'll get better. Even for my husband to start to deal he just doesn't want to believe it and you can't blame him for that, but he said once we know we can start to make plans.
 
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