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bhyatt32

Member
Joined
Apr 24, 2012
Messages
22
Reason
PALS
Diagnosis
04/2012
Country
US
State
NC
City
Louisburg
Hello friends. You've been so helpful that I do have more questions. Thank you, in advance. So I'm now 3 weeks into positive diagnosis for ALS. What I didn't tell you is that I'm 49 and working at a fairly successful job. As my hand and legs have been showing noted weakness (I went from cane, to crutches, to walker), I'm also getting extremely tired as dressing undressing, shower, seems like a job in itself. My question, should I stop working and use my strength for my family? They are all suggesting I do just that. Or should I continue to work until I physically can't?
I welcome and appreciate all of your thoughts.

I feel so blessed to have you all here for me, and can't wait to be of help to others.
 
My advice is to stop work as soon as you can. At the end of the day your career does not define who you are. When our time is up no one is going to say what a great person, they worked all the way until the end. No they will remember what a good spouse, parent, family member, friend you were. Focus on enjoying life, adjusting to new normals and building memories with your loved one's.

Honestly it's an easy decision in my humble opinion.
 
I drove a school bus and was planning on finishing out this school year this month....but in February I stopped. I had been praying to my LORD for a sign that it was time to stop working. I got my sign in February! I was trying to hold out long enough to coordinate health insurance, sick days & other benefits that were job related so my monthly income wouldn't dwindle to nothing. As Richard (hubby) would say "It all comes down to money". But, driving a school bus was a HUGE safety issue I had to consider more than the money.
I would think you have been taking a look at your finances, sick leave time, benefits from work, etc. From the financial aspect that is a question only YOU can answer.
Now from the physical aspect....unfortunately the weakness only gets worse. Is your job a physically demanding one? Could your job be a safety issue for you or others around you?
I truly DO NOT think you will EVER regret not working so you can be with your family!
It is FANTASTIC that your family is supporting you to stop working!
Assuming you have paid into SS your 5 month waiting period for your SSDI & Medicare benefits starts from the day after your last day actually worked.
 
I am guessing that you might have schooll aged children. If so, you might want to consider it since summer is coming up. It will make the transition easier. My husband was 49 when diagnosed. He had a very successful career, and it was hard for him to be "retired" at the height of his career. Our daughter was a senior in high school when he went on disability in mid April, 2010. The activities associated with graduation kept us a bit busy, so it didn't seem quite so boring. During the following school year, we had quite a bit of time on our hands! With the help of his dynavox, Terry did a little bit of "volunteer" consulting to help fill the time. (And, there were always those outings to the local zoo!) Good luck, it is a hard decision to make.
 
Ted,

Thank you so much. Your words are a huge help.

Bob
 
Cathy,

Thank you as well. The picture is becoming more clear.

Bless you.

Bob
 
Good luck, Bob. Ted and Cathy have given you excellent advice.
 
I am in the same place as you except I have decided already to stop working as soon as possible. I am just waiting for the six month waiting period to kick in before I officially leave. Unfortunately for a stupid rule that nobody understands, in order for me to use the sick leave I have saved for years, I have to be "coming back". In other words, a terminal diagnosis means I can't use it. They have been good about letting me work from home and only go in once in a while to get around the rule.

I also feel as if I was at the height of my career. I not only worked full time but I also taught classes at the community college. I am deeply mourning the loss of both jobs I loved. However, I have been enjoying my mornings with my husband before he goes to work and the time I can spend with my mother when she comes to help me. My husband also teaches and will be off for the summer so this will be the first summer I can be off with him. It is amazing to me how quickly I lost interest in work after my diagnosis.
 
LabMom,
I believe "congratulations" are in order for your decision to stop working. It is, at the same time, a simple yet perplexing milestone. I was diagnosed in October of last year and initially thought I'd quit working that day (I am retired from the military, working a post-retirement career) but changed my mind over time. Since I told my family that we were going to stay the 'normal' course until the disease prompted change, it seemed contradictory for me to quit working now. My wife still homeschools our youngest (the older 3 are in or graduated from college), so I would most definitely be in the way!
So, enjoy your new 'normal' and don't look back! I hope it turns out that the height of your career is miles below the place you find now.
 
My husband has become a workaholic since he was diagnosed. apparently he did not get the memo that he should spend more time with his family. He works from home now on the computer, 6-10 hours a day 7 days a week. We own a business, and he has become obsessed with trying to make it better. he is not interested in the family--all he wants to talk about is work, work work, even to our kids. I know it makes him happy and it keeps him busy and he is doing it for us too so the business can stay afloat, but it is sad that he use to be much more the family man than he is now. :(
 
I'm a music teacher and spent most of this school year collecting second, third, and fourth opinions of my ALS diagnosis. I had planned to finish the school year and then retire. Didn't make it. I've been retired for two weeks now. Best decision ever. I bet you'll feel better when you do it too.

~ Sarah
 
Remember to consider the 5 month wait for SSDI to kick in. If you have short-term disability you can use during the wait period, I would suggest you use it.

Some people get confused--but you do have to be off work 5 months before Social Security kicks in. The Medicare kicks in on the same day instead of the two years it used to be. While SSDI is automatically approved for ALS--it does still require 5 months of NOT working before you'll see a penny (a stupid rule if you ask me)

I'd be for conserving your energy and doing things with your family now while you still feel pretty good. Is there a chance of working from home at all?
 
Got my diagnosis on 9/29/11 but did not stop working until 11/15, so my 5 months is up May 1 but because of the way SS works and where my birthday falls, my first SS check comes the 3rd week in June so I will actually go a full 6 months with minimal income. Retiring when I did was a very hard decision and I cried over it. I'm not a crier. But to think about working now...it would be very hard. I'm glad to have time with familt - spent 10 days with a sister I really hadn't seen much of for 15 years. Spent a week with my best friend from childhood, who laughs with me over this stupid disease.

you don't know where you will be in 3-4 months...spend your energy with the important people.
 
I was diagnosed with PLS June 2011. As of last Friday I am on extended medical leave and then will apply for long term disability. I am an officer of a community bank specializing in home loans that are sold to Fannie Mae. The stress of the job, which i took very seriously, caused so much stiffness and fatigue that my husband and I decided it was time. I had no energy for anything except for work and that's not where I choose to spend my energy. My bank could not have been more supportive. I know beyond a shadow of a doubt that we made the right decision. I have never been able to pick my grandson up from school and this first week of freedom I picked him up 3 days from school....God is good! I choose to have a blast as long as I last!
 
I thank you, and everyone, for your replies. I'm going in to work tomorrow to officially resign.
Thanks to my new extended family.

Bob
 
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