another Question

[happygardener]

I am a self employed childcare provider in my home..I am lucky to be able to be home to care for my husband as well as earn some money(so we dont lose our home..)but I was wonderingwhen will I have to give up working.I would love to know as it would be so great just to have some meaningful time with my husband..but the reality of life is that if I want to try to keep us in our home and take care of thing to make my husband happy I have to work as long as I possibly can..No question,my husband comes first.and id pack it all in and sell if it comes to that but he loves it here and I want to try to keep him in the home we worked so hard for all of our married lfe...right now its managable and he is not on any appatatus,feeding tubes wheelchairs or walkes,fairly moblibe and indepedant..I just cant leave him alone(afraid of chocking on mucus or falling)any feedback would be greatly appreciated.Thanks

 

[EGBAR]

this isn't meant to be a political stab, but isn't healthcare free in Canada? Just wondering.

 

[Lobster]

There is a good number of Canadians on here so maybe you should start a thread with a title that will attract their attention. I am guessing things might differ from one province to the next.

You sound like a very compassionate, loving wife. I am glad your husband has you as an advocate.

I hate hearing how people may lose their homes.

Me: I'm already poor... "When you got nothing, you got nothing to lose..."

 

[happygardener]

this isn't meant to be a political stab, but isn't healthcare free in Canada? Just wondering.

heathcare is free..but most of the things associated with als are not..Just like the us you need insurance and when they find yout you hhave als.you need to get a lawyer to fight..its a waiting game.Im on a list to borrow if the supplies are avalible,med are not covered..and I want to care for my husband at hoem and none of that is covered!I never cared either about having extra..but now im buying lotto tickets and hoping for pennies from heaven!

 

[Barbie]

I find that work helps keep me sane--definitely exhausted but still a little bit of ME. If you work at home, you will be able to care for your husband too as he progresses and beleive me, you will know when you can not work any longer! the problem with ALS is you can't really plan for the future, you have to just live one day at a time. Hopefully your husband will progress slowly and you will have lots of time together.

take care,

 

[HelenL]

Do you have children of your own, are they adults? How old is your husband? Because you don't know how long it will be, and you can't stop living your lives in the meantime. As you try to plan ahead... If you've owned your home for a long time, is it possible to get a reverse mortgage on it, so you can spend a little more time together without so many money worries? Or would it be smarter as he progresses to get into a smaller place that you can afford, and maybe use the equity in your home now keep it cheaper? Or more accessible,and easier if you're the only one maintaining it?

The other thing you have to remember besides the tough choices you have to make is that some PALS have FTD, and there may come a time where you will have to make some decisions whether he wants them or not. I'm not talking about to peg or not to peg, but the economic ones.

I honeymooned in Nova Scotia 21 years ago, loved the beautiful countryside. I never saw such clarity in the colors, especially up on the Cabot Trail.

 

[Al]

Have you claimed Canada Disability Pension for him yet?

 

[Tom's Support]

Being a home care provider for children, you know the demands the job places on you. You are no doubt learing the demands that ALS issues are putting on you in order to keep your husband in good shape. I can see the ease in doing both for a time, but you will know when your husband's needs start putting a strain on your ability to care for the children too. At that point you will not be doing your best for either and a choice will have to be made. The families that are relying on you should be made aware of the increasing demands of the disease so they can be ready to relocate when they have to. No one wants to move their children too soon or too often, so they will likely remain your customers until they have to change, but if you leave them without the option of preparing for that day they will not think well of the whole situation.
You know your charges and their parents, so you are the best one to determine the timing of the discussion.

Maybe letting your customers help you plan this out will be all the guidance you will need.
Praying for you......
Juliette