When did you decide to stop working?

[brita]

Hi everyone

This is my first time posting. My name is Brita I am 29 and was diagnosed with ALS in Nov 2015. It’s been hard to come to terms with but thankfully everyone around me is very supportive. The biggest issue I am struggling with lately is if I should/how much longer should I continue working.

When I was diagnosed I was living and working in NYC. I did tell my managers and they were supportive of my decision to move to my parents in Miami and I moved to South Florida in Feb. I am fortunate to have a job that involves desk work, lots of emails, phone calls etc. I work for a retail company, so instead of working in a large office, they’ve allowed me to work from a store. This has been fine until recently, I am finding the act of getting to work is absolutely exhausting. Fighting traffic, taking my computer bag in, the quarter mile walk from the handicapped spot I park in to the store. All the small things that used to just be annoying are now exhausting! My HR person is very helpful and informative and I am thinking my next step is to apply for FMLA intermittent leave. I don’t want to quit just yet, I love my job and my company so I want to work as long as possible. Plus I have a lot of student loan debt, private and public, and it’s a heavy burden to think about.

So my real question is at what point did you decide to stop working? What sort of “reasonable accommodations” did you go through before coming to that decision? How did you handle the prospect of paying back debt if you did quit?

 

[Margesmn]

Welcome Brita. I'm sorry you've joined us, but I hope you will find everyone here to be as supportive and helpful as I have.
I was diagnosed in November 2015 also. I quit work in February. I too reached the same point you are at where getting up and getting to work was exhausting. I was fortunate to be able to work from home and as I was able. Is this a possibility for you? I just reached a point where I wanted to be able to spend my time doing what I wanted to do and not working. My job was also stressful and that was a big factor in quitting too. It's not an easy decision. I am married and my husband works so that made the financial decision easier for me. I'm not sure how student loans would be if you are not working. You will qualify for Social Security Disablilty which will kick in 5 months after you quit working. (You can apply the day after your last day of work.) Does your employer offer any short term disability?

Ask lots of questions here and of your doctors and your local ALS chapter.
Wishing you peace in the days ahead.
Margaret

 

[GregK]

Regarding paying back debt, many life insurance policies have something called accelerated death benefit which can give you a large, tax-free hunk of cash.

http://www.aetna.com/individuals-fa...rary/accelerated-death-benefit-fact-sheet.pdf

 

[Vincent]

My decision came down to work/life balance. When I reached the point where I could work but slept the evening away not having time for family, I went on disability. It was a simple decision, choosing family over work. We have a limited amount of time. Invest it wisely.
Vincent

 

[KimT]

I was officially dx in August 2015. We were just starting a new semester (I was a college professor with close to 26 years with the same public college.) Unfortunately, my immediate supervisor retired a few months before my dx. The new boss, an attorney, was not very accommodating. My first move was to get approved under ADA to work 100% from home. I had a solid case because I had developed and oversaw a program that was 100% online and I had a home office with everything I needed. They went back and forth for a week or two and then approved me for one semester. Same time they started requiring me to do huge amounts of administrative work (I had been a Department Chair before so they knew I could do it.) They claimed it was to make up for my not serving on committees but the amount of work in itself was a full-time job. So I went out on FMLA and bought myself 12 weeks. I had enough sick time to carry me until March and the 12 weeks would get me to the end of the semester, then I had three weeks off for Christmas. During the first few weeks off I knew I could never go back. There was too much else to take care of and my best friend just had a pacemaker implanted, my 79-year old brother was here for the Winter (his condo is 300 steps from mine.) Both of them needed help and I was it. So I went to HR and pleaded my case. The HR Director agreed to let me stay on the payroll until my sick leave ran out. That was a blessing because they paid 100% of my medical and it didn't run out until Medicare kicked in. As soon as my short-term disability (sick leave) ran out, my long-term disability kicked in. I had to fight more for that than anything else and they are still trying to reduce it to the minimum because they say my pension (which I converted into a payout IRA) COULD have been taken monthly.


Here are some things I've learned:

No matter how much of a star you are at work, cover your butt.

Use FMLA to protect yourself and make sure you follow up on any forms your doctor sends in.

Once you have stopped working, apply for SSDI immediately (read sticky.) Get your doctor to write a cover letter with your diagnosis. I was approved within 2 weeks and Medicare started five months from the last day I worked (month following.) You can go online to see how much your SSDI benefit will be. My estimate was within $50 of what their site said. That will start the month after Medicare starts because they pay one month in arrears.

If you have a work long-term disability plan, make sure you get your doctors to fill out their portion correctly. Same with any life insurance demand for accelerated benefits.

Your Federal students loans will be forgiven BUT you will have to pay taxes on the amount forgiven. IRS debts cannot be discharged in bankruptcy nor can student loans. What CAN happen is they have hardship "settlements." I've gotten these for clients in the past (I'm a CPA.) But you do need to consider your finances.

Keep any funds that you now have in your 401k or IRA in those funds for protection against creditors.

The bottom line is weighing the pros and cons as relates to your quality of life. You can't beg or buy one day back. I thought I would miss my job, the students, my colleagues. Aside from a few colleagues who keep in touch, I regret working all those Summers when I could have been doing things I liked better.

 

[Suzannah]

Hi Brita,

I'm so sorry to hear of your diagnosis. I don't have much to add about leaving work, but I wanted to add some info to Kim's comment about discharging student loans.

A good resource for information about discharging federal loans because of disability can be found here, if you haven't seen it: https://www.disabilitydischarge.com/

--Suzannah

 

[BlueTrain]

Hi Brita,

So very sorry to welcome you here. I am 31 years old, diagnosed this January, but my symptoms began when I was 29. I had a fairly rapid UMN onset beginning in the fall of 2014 which really affected my ability to walk. By February, 2015, I realized that it was just too dangerous to walk from my car to my office, especially in the ice and snow. (I’m from up North.)

I’m a corporate/tax lawyer, and luckily, my employer has been very accommodating by allowing me to work from home. I was (and still am) able to work on transactions, participate in conference calls, and carry on my practice with the help of my wonderful paralegal and the other lawyers at my firm. In some cases, I even meet with clients in my makeshift home office, which is nice. That being said, continuing to work hasn’t been easy. I have a lot of pain which at times makes it very difficult to concentrate. Plus, you know, the whole terminal illness thing is also a bit of a distraction.

Your question is a really good one. In my case, I will probably stop working when I am no longer able to effectively service my clients, and to be honest, I think that time is fast approaching. My job has always been stressful, and before getting sick, I had to be on top of my game in order to perform at work, i.e. meet deadlines, manage clients, close deals, etc. Right now I feel like I’m taking a Toyota Corolla to a Formula 1 race, if that makes sense. I just don’t have the same passion, drive and focus that I did when I was healthy, which makes things difficult. Plus, as was noted by some of the other members, work kind of gets in the way of being able to enjoy the time I have left. For example, I’ve realized that negotiating and drafting a shareholders’ agreement isn’t all that important in the grand scheme of things, and is probably not a valuable use of my limited time. It’s a difficult decision, particularly if you’re a workaholic (as I am) and enjoy your work (as I do), but I think you’ll instinctively know when it’s time to hang up your hat.

Best of luck with this,
Thomas

 

[sleepy]

I agree with what Vincent and others already said. I was the primary income and felt like I should keep working and my work was supportive with reduced hours and different duties. Parents thought I'd miss mental stimulation and social contact. I stopped in May and never regretted it. Time is short. Knew I'd never wish that I'd spent longer at work. Took three weeks of day sleeps before one day waking up not exhausted. I love spending early retirement with husband and kids!

 

[dkcarl62]

I was standing at the copy machine one day, and as I was turning to leave with my copies, I fell over backward. Like a tree falling. My head bounced twice when it hit the floor and co-workers said it sounded like a bowling ball. It was a miracle I wasn’t seriously injured.

Co-workers assisted me in getting on my feet and I was taken to urgent care by an HR employee.

I had some tests done, and an x-ray and was send home to rest. I missed about 8 work days before the doctor deemed me well enough to return to work. When I got back, I was informed that there would be no workers comp claim filed for my event, as the company was not at fault for my injury. The cost of my medical care was funneled thru my health insurance coverage, and the time lost from work was deducted from my vacation bank.

That is when I filed the paperwork for disability.

Deb

 

[GregK]

Deb, that was a bullshit move by your old company.
I think a lawyer might've had a different opinion.

 

[dkcarl62]

I contacted a lawyer, Greg. He told me they were absolutely wrong to do what they did. He also said I won't be able to find a lawyer to touch the case. Not enough money. I think the company wanted to get rid of me. They couldn't have someone who falls down around - too much liability that I could have seriously hurt myself. When I did come back after the accident, they insisted that I use a walker inside the building. Which was ludicrous - how could a walker have prevented me from falling backward?

Deb

 

[KimT]

Plus, getting a lawyer and going to court or even arbitration is exhausting. I would have done the same thing.