My wife has ALS and I don't know how to financially survive.

2 answers | Last updated: Sep 15, 2016
Scottfillipponi asked...

My wife Kristen was 43 when she was diagnosed with ALS 3 years ago at the Mayo clinic. They sent us home to NYS with the advise of "get your affairs in order she has about 18 months to live!" I resigned my job of 26 years with NYS to take care of her promising "I will not let you die in a nursing home". Battling governmental red tape and and roadblocks every step of the way she now is covered by Medicaid, Medicare, and Medicare part D. We have 2 sons in college and a 12 year old daughter all we have been able to get covered by health insurance through our ex's or NYS. I have been able to get her SSD and our daughter SSI. Combined they receive approximately $1500 a month. My unemployment runs out this month and we have gone through all our savings and family help. This is my problem, federal income guidelines only allow me to earn approximately $400 a week anything over that has to be paid into medicaid spend down account. There is no way that I can keep my home, feed and support my family and live day to day on that amount. I have worked so hard all my life only to have this disease and the government force me to not earn what's needed for my family. I have tried to work with my State Senator Joe Griffo but he says at best trying to get legislation passed to allow people like me to earn a fair living and keep needed Medicaid services for my wife may take several years...she doesn't have that time. Please tell me how I can get back to work and make my family proud of me again earning enough to service. We worked so hard to build our lives around good jobs, nice house, nice neighborhood, saving for our kids and their future only to have a disease with no treatment, no cure, essentially a death sentence. Please tell me you can help me!



Community Answers

Caringkrys answered...

Hi there,

It sounds like you are really going through a tough time. ALS is scary enough, without having to deal with the financial stress.

There are some amazing organizations which can help you out by providing equipment for free, counseling, and respite care.

By NYS I think you mean New York State. Your ALS Association is really amazing. They have a website: http://www.als-ny.org/

The Muscular Dystrophy Association is also really helpful for ALS patients - the two diseases are closely related. There are a lot of New York resources: http://mda.org/locate/state/ny and they can hook you up with even more.

Have you seen a doctor since you got home? She should be seen by a neurologist at home, who can help make recommendations for organizations too. AND the neurologist can hook you up with a social worker, who will fight the good fights for you, advocating for better care, connecting you with organizations that will help, and research hospitals where you might be able to try experimental treatments if you're willing, or at least help them gather data to search for a cure.

I don't know how much financial help they can give you - but they can definitely give you material help. And they can advise you about the finances. When I was caring for my father with ALS, the social worker was really amazing at advising us where to go for financial help.

Please let us know how you're doing, and if you're able to get any help. We'll hold you and your family in our thoughts.


Jpa answered...

Hi Scott -

You have done tremendous work. Great job.

Here are four things I would consider to immediately impact your financial situation:

  1. Family Member Loan - Ask a family member to take out a loan under their name from a bank. Have them pay some of you expenses directly (e.g., mortgage payment, children's food expenses at school).

  2. Legally Separate From Your Wife - I shudder even typing that. I personally would not do it. However the challenges you face are one of legal construct. The Federal government is treating you and your wife as one household income unit. If you were separated your income would no longer be counted in her Medicaid calculations.

  3. Have A Kid Drop Out Of School And Work - Speak with your kids and see if either of your sons in college are open to coming home from school and finding a job to contribute to the family expenses.

  4. Start An Online Campaign - I know this sounds cheesy. However there may be many friends out there that would like to assist with $100 - $500 but don't know how. Indiegogo.com is a website to consider.

The above options assume you have pursued the below steps already: 1. Liquidated assets you can shed - second homes, not needed cars, etc. 2. Taken out loans - traditional loans from the bank, home equity lines of credit 3. Run up your credit card debt - run through credit cards 4. Pursued family assistance & loans - sounds like you have done this. 5. Liquidated / taken a loan out against retirement vehicles (e.g., 401k, pension)

I don't recommend many of the options above. Many of them compromise your long-term financial position. However I strongly believe that you deserve direct answers (even if they're not pretty).

Your creativity and hustle would make any employer thrilled to have you join their team.

My heart goes out to you.

JP

p.s. Your family is already proud of you.