I am in my mid-40s and have been diagnosed with an incurable disease. I am already symptomatic and its getting worse week by week. I don't know how much longer I will be able to keep working. My wife died of breast cancer 7 years ago. My daughter (12) and I live a little over an hour from family. Saw the doctor yesterday and they confirmed the bad news they warned me about a couple weeks ago - the disease continues to progress, there is no cure, the treatment to slow it down was only partially successful. I should become unable to care for myself disabled in 6-24 months and just over 50% survival rate at about 5 years out, around 20% at 10 years out.
I told my parents and siblings today. They are freaked out and upset, but are being very helpful. Here is my plan - please tell me if I am missing anything.
Good news - I have great benefits at work. I have 5 times my annual salary life insurance, great health insurance, and a two-thirds salary disability policy that I took AFTER taxes ... so that if I ever collected it, it will be tax free. I have about $100,000 saved for retirement through work 401k. I have about 130 hours of Paid Time Off accrued at work.
I am taking the next week off work to get my affairs in order. I received a trusted recommendation for an attorney to update my will, my powers of attorney, and my living will ... and the family member made a phone call - I have an appointment on Monday afternoon. I plan to discuss a trust for my daughter that my parents will administer until she turned 25.
We bought a house 4 years ago to be close to work. I'm a veteran so we used 0% down VA home loan. I am going to look into selling the house ... should about break even after fees ... might get a few thousand out of it. Plan to find a place to rent close to my parents. They live in a good school district so I will stay in their school district so that on my NEXT hospital stay (already had two in the last 6 months ... one for a week and one for 4 days) she can stay with my parents and still take the bus the school and from school. My Mom had to take off work to stay with her the last two times. We will plan to move as soon as school lets out for the summer.
My mom is now looking at single story rancher homes and handicap accessible apartments in the same school district as them. So far, rancher style homes are hard to come by but we have a few leads on apartments. I am going to go look at some on Tuesday. Do you use a real estate agent to find a rental? How do they get paid?
I will need to find a house cleaning service. My fatigue is already too bad to clean the house and I wouldn't be able to do laundry without my daughter's help. Is there a better kind of helper to consider? Someone who can come two or three times a week to do all the housework? I can't even put the dishes away anymore and I feel horrible that my 12 year old is now taking care of almost all this type of work in the home. Things like changing the batteries in the smoke alarms or changing the air filters didn't get done at all the last time change. I told my Dad this and he came today to do it. That really made it hit home for me.
I am looking for a family counselor close to my parents for my daughter and I to see. I told her I am sick and am looking into us moving closer to her grandparents. She is excited about moving. I haven't told her the time frames involved with my illness ... but she lives day in and day out how ill I am every day. She sees I am getting worse. I don't want to probe too deep without a professional there to help guide us.
I can still drive ... for now. Not sure what to do long-term with the car. Don't think this is a "need to solve now" problem. I have used Disabled American Veterans (DAV) to get to a VA appointment - I applied for disability compensation that I am still waiting to hear back on. Is there a general "drive you to doctor appointments" type service - for veterans or otherwise? Uber for sickies? Or maybe just Lyft drivers who would help you in the car for a tip?
I am also planning on looking for a disability attorney to guide me through how to approach this with work. I can still work right now (I have a desk job and can work remote three days a week) but I am not sure for how much longer. We got screwed over with my wife's disability when she got sick - she cut back her hours and that ended up disqualifying her for her work disability insurance even though she paid for it. She passed just a few months later and we had her life insurance so I didn't make anything about it. I had a kindergartner on my hands at the time and just didn't have the energy to fight it. The life insurance went to get us out of debt and let me take 3 months off to be with my daughter ... and get my head back on straight. I still have about $7,000 in savings left over from the life insurance that has always been our rainy day fund.
I want to try to travel with my daughter while I still can ... but that window is closing. My parents want to go with both of us for a family vacation to Orlando this summer while I am hopefully still healthy enough to go ... even if I can't ride the "good rides".
What am I not thinking about? What else do I need to plan for?
[edit] Yes - it is a degenerative neurological condition. We live in the mid-atlantic region of the US. Sorry about the vagueness - don't want to be identifiable until I tell my employer.
Submitted April 06, 2019 at 09:16PM by Throw9796 http://bit.ly/2G87y09
