How do you care for PALS when you NEED Insurance?

[lovemydad]

Hi Everyone -
Just to recap - I am an only child, with 2 children of my own and live 6 hours away from my parents. I try to go home 2 weekends out of the month to help. My father was diagnosed April 2009.
So, I was talking to my mom last week and posed the question...."have you thought about what we are going to do when Dad cant be alone anymore during the day?" She said only a little.....and that she is terrified of that and doesnt know what to do because she CANNOT quit her job. She said, "no job means no insurance....and even if I work part-time at my job, I cant get insurance". She said, what do people do? Neither one of us know what to do at that time and I told her I would pose the question to all of you -- how do you take care of your PALS if you CANT quit your job because you HAVE TO HAVE insurance?
Your thoughts and insight are most appreciated.

 

[indigosd]

No clear cut answer. Does your Dad have SSDI or is he a Veteran? Some States have programs to help the elderly and disabled stay in their homes but it is always minimal assistance. Many CALS pay for home care out of their own pocket or stay at home and do the care because they have no resources. Many of us are in this situation. It is tragic. My husband has Medicare A & B and supplemental F. My 13 year old son and I have no health inusrance. We lost it in January. Our SSDI is just enough that we do not qualify for Medicaid. South Dakota has not change their poverty level guidelines for 10 years! Hospice is another program that is used by many. I wish that I could wave a magic wand and put all the PALS and the CALS on an Island where we could take care of one another. Some communities have very active and helpful support groups. Some CALS get help from their Church family. This is really one of the most difficult aspects of this journey. Your Momma is in good company if that is any consolation. We do understand. hugs

 

[Robert Redmond]

My brother didn't have insurance which might explain why it took until he was almost fully paralyzed to even get diagnosed with ALS.
His neurologist that wasn't getting fully paid didn't seem to try hard enough and everytime he went to the hospital they rushed him out
as fast as possible with no answer for his problem. The financial lady would even come into his room telling him he needed to make arrangedments to leave asap because they know they weren't getting paid for his visits and couldn't afford him staying there.
Gotta love their heart.

The only thing worse than ALS is ALS with no insurance

 

[Miss]

Does your Dad have Long Term Disability? Some policies offer additional funds for caregivers.

 

[halfin]

We are in somewhat the same situation. My wife is self employed and gets insurance through me. I am the one with ALS but luckily still able to work. Once I stop, I can get Medicare after 6 months, but not my wife. She has some pre existing conditions so couldn't get an individual policy.

One thing we will do is COBRA. That lets us take over the payments for the insurance for 18 months, or 3 years here in California. It is expensive but doable. Your mom may be able to do that too.

Beyond that, Obamacare will include health care pools for people who can't get insurance. You have to be uninsured for 6 months, which may be tough. And I don't know how good the rates will be. If we do that, one trick is to use the mail order pharmacy and get a 3 month supply of prescription meds. Many policies allow that. Then cancel your insurance and the first 3 months of medications will be taken care of.

 

[helpinhand]

I understand where you are coming from my MIL and FIL owned their own business so when he was diagnoised and unable to work then needed around the clock care my MIL was unable to stay with him. My husband and I live 1hr30min away. Luckily I have a job that allowed me to make my own schedule so I care for him 4 days a week, work 3 days a week and my husband cares for him 1 day and my MIL is closed 2 days a week so that is when she cares for him. I guess it sometimes takes many people to cover these issues. Does she have family other than you that lives closer, that may be able to help. My prayers are with you and your family that a resolution will present itself when the time arises.

 

[lovemydad]

Thank you all so much for your thoughts and input. It is heartbreaking.....coping with the disease itself and then on top of it the financial drain it brings to a family to add to the stress and pain.....and the limited and/or lack thereof assistance out there to help families in our situation. Regardless of insurance, my mom needs her job....how would she/they live/survive without an income?
I know my dad gets some disability, not sure if it's long-term (i cant remember), I emailed my mom and asked her.
I know like many of you, I get so overwhelmed with what is to come....I stuggle with how to cope, and fight bouts of denial.
I am so scared, for my dad, my mom, me and my kids.......
Curious...is anyone of you from NY state? That is where my parents live.....I've seen people talk about how other states have some help and or assistance, but havent been able to find anything in NY state.
My mind and brain go in circles....worrying and stressing and fearing....about every aspect of this disease and what it brings.
I am so thankful I have found you all to reach out to. God Bless you.

 

[MelissaPeter]

The purpose of Medicare supplement insurance is to help people cover their health care costs. Health care costs include doctor visits, hospital stays, surgery, procedures, tests, home care, and other treatments and services.