CALS who have left a job for their PALS

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PennyX

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I am wondering how long it will be until I have to leave my job to take care of my husband. His arms are weak and his dexterity and grip are very weak. I need to keep working as long as possible to keep our health insurance, but the thought of him home alone all day in this weakened condition causes me great anxiety.
Is there any advice out there from anyone who has gone through this? Is it possible to find some companion service or something that is low cost- I don't earn alot, so I can't pay much. Any suggestions?
 
Penny, with a diagnosis of als, your husband is eligible for immediate ssi benefits including medicaid.. once he gets that going you may be able to get some help that way, not just financially but also form medicaid benefits. I cant help you with other info tho. Sorry you have to find yourself here but know that you will find helpful advice and community here.
 
Penny it is a common problem around here--we all understand. all I can tell you is you need to play it by ear, there is no simple answer. you will need to think out side the box for answers--do you have neighbors or friends or family who don't work the same hours as you that can check on him during the day? or maybe a club or church group you belong to? when my husband was first sick, he could sort of walk and his hands were going first. I worked, and was scared also because he has some falls. we got him a small scooter so he could drive it I n the house so I didn't worry about falls, and I would leave food and drink out . he was alone for about 6 hours until kids came home from school. he would stay on the computer all day and we would stay in contact with IM. if he went to the bathroom or to watch tv or take a nap, he let me know. if he didn't answer me then I would call neighbors or head home.

As he got weaker, I started going into work later. summers and holidays the kids all took over. Now I have a CNA for 4 hours a day, and he is only alone for about an hour until the kids get home. this works for us now, but I know things can and will change. try not to get too stressed about it in advance.

hang in there!
 
I stopped working 6 months after diagnosed but used FMLA leave for 12 weeks and was able to keep my benefits until the FMLA leave was exhausted.
 
With the new ACA, depending on your state, you might be able to leave work, not elect COBRA and become eligible for [expanded] Medicaid or a subsidized policy. Or as others have stated, if your husband is <65 but Medicare-eligible otherwise, you can apply for that on line. Then you can get insurance separately for yourself via COBRA or the ACA when you need to leave your job. If your husband becomes eligible for Medicaid, some states will pay for some home care through that program. Visit your state's insurance commission and health plan finder (if your State has its own exchange) Web site and see what options exist.

Options for low-cost care might also include a swap for housing if you have a spare room...
 
I don't know if this would help much. But, for my dad we got a medical alert necklace that he wore if know one was with them. All he had to press was one simple button in a emergency. Great idea from Barbie to get a neighbor or friend to check on him too. We had alot of retired neighbors that did that for us and dad enjoyed the visits.
 
A big thanks to all who replied, it is good info. My husband is on medicare and on my policy at work. i am definately stressing over this-probably too much..it isn't the money so much. he has SS disability and a bit from private insurance. i just worry as i said about our healthcare. We have his 90 year old very agile mother coming to help every other day but other than that we don't have any help. that is something i will be looking into for sure.
 
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