Need Help: "getting your affairs in order" (what does that mean?)

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Active member
Aug 20, 2006
Friend was DX
Hello. I am asking this for a friend. Recently diagnoised with ALS and the doc at the ALS Clinic told the couple that they needed to "get their affairs in order".

Of course we know that that means a will, financial arrangements, etc...

But, they are at a loss right now as to where to start. Could someone please provide me with a list of things to consider? Power of attorney (aren't there different ones like financial or medical?).

What about social security? Disability? are these different? He is currently employed but not sure how much longer he can keep working full time. How does quiting your job affect these financial things? If one has considerable debt how does this figure into the picture? Any tips or suggestions?

Need advice asap on how to proceed.
Hi Pearl. I'm not sure how the American social security and disability work so can't advise you on that and medical and financial power of attorney's can vary state to state. I think we have a couple of American lawyers on site so hopefully they can jump in and help.
A few other things to consider are whether the person wants a PEG or feeding tube. Do they want to be ventilated if a case of pneumonia comes up and it is needed. Do they want CPR performed if it is required at any time. Some people don't want a Bipap if it is needed. Without mine I would have been dead a year ago and I am still walking talking driving and enjoying most of life. I just can't breathe lying down without the mask on and the machine. I don't need it during the day. Some do but I'm still OK. Just a few things off the top of my head now. I'm sure some others will have more tips. Hope it helps. Take care. AL.
Thank you, Al.

Yes, if anyone else with knowledge of US law is out there, your input is appreciated- especially if you have knowledge of new bankruptsy law. I've tried to search the internet but the legal talk is a little overwhelming. Any guidance appreciated.

Also, it looks like my friend can apply for Social Security Disability Insurance once he is not working anymore. Am I reading that right? He does NOT apply until he has actually left his that correct?

And, if I'm reading it right, it looks like once he is approved for SSDI he will also receive medicare? And this process takes at least five months from it date of filing the forms or date of approval?

Also, if he quits his job, I think there might be some disability insurance with his company (60% of salary minus the COBRA payment to keep the private insurance going - if I'm understanding that right as well). Would this private insurance quit once SSDI and medicare kick in?

Will he also get regular Social Security - or is that only available after he turns it 65?

What about the family? If he is covered under Medicare, will his spouse also be? Or is she just now without insurance unless she can find it through another route?

Sorry for all the questions, but any insight apprecaited.
Hi Pearl I hope I can help some

I'm in Gulfport, Mississippi and when I became disabled and had to quit work I was living in Florida. I had to have a doctor declare me totally disabled and have him or her fill out a form to that effect. I immediately applied at the nearest Social security office for disability benefits and for Medicare. The medicare only covers the person disabled, no family members. My case was declined 2 times and I went to a Lawyer and was told this is the "normal process ", Social Security figures if they decline you most people will give up and you will go away. YOU have to have a Lawyer for the 3rd appeal, and that is when anyone who is really disabled gets their disability pay. The Lawyers fee is paid by Social Security. The payment you receive from ss is based I understand on the average of the last 5 years earnings, and don't be surprised at how little it is.
When I had to quit work I also had cobra insurance, they offered to continue my coverage as long as I was on my companies disability plan. When that ran out and I was terminated my insurance payments to cobra went from $350 a month for the family plan to $2800 a month. Of course I had to drop the coverage and shop elsewhere for coverage for my wife, who currently has Blue Cross Blue shield, and I have medicare.
The time frame to get the Social security first check from when I applied was 1 year. Maybe other people are more lucky and have there's quicker, but if it had not been for my savings we would have lost everything.
I don't mean to be a doomsday preacher but, just trying to prepare you for the hard facts, at least for how it worked for me.
If your friend has a good disability plan with his company stay on it as long as they can.
I hope this helps, sorry to be the bearer of sad news.
God Bless,
Big AL

Pearl, I am in Missouri and my husband was actually diagnosed at the ALS clinic close to us. The staff there was extremely overwhelming and approached us on our 2nd appt. They have someone to assist and advise you on everything from your mental health and physical needs to filing SS/Disability, etc.

They handed us a huge 3 ring binder loaded with info. At first we set it aside, not able to deal initially (diagnosed 5/2006). We have already started to refer to it more and more. They did advise us immediately to file. My husband too is still being paid through his employer/disability benefits. We did our initial filing online and was contacted by a Social Security agent the next day. He seemed to think we would be approved 1st time. We plan to exhaust our full disability benefits that he has earned through his employer (29 yr this month), but have the understanding we will be able to draw a SS check also and have the added Medicare. I depend on his income so he is trying to make the right choices that will support me when he is gone, the longer he stays "employed" the better for our pension. Hope this helps.Good Luck. Boots

I was just going to field some questions on disability and found these postings!I have been waiting since Jan. I have been declined once and am on second appeal, but I was told by my senators office I was supposed to get it [S.S.] right away because of the disease and certain laws govering it. I know a Las Cruces man who got it three wks. after the five mo. waiting period and he was not 100% diagnosed. with als yet.! Maybe the senators' office is incorrect on the law?Would like to know what the law says on this matter? B. Al they go by the last ten yrs. of income, I barely made it because of four yrs. in that period I wasn't working! Is very stressfull! I had to move in with relatives and rent my house out for income. Fortunately my house is paid for. Not everyone is so lucky. Barry U.S.

you can go on the web site for social security and when you look up the qualifications for disability, you will see that if you have been diagnosed with ALS you get approved immediately because ALS has been considered a disease that is covered. It states that the 5 month wait is not there for ALS and it takes about 20 days to get approved.
Hope this helps.
That most certainly DOES help; Sharon, you wouldn't happen to have a link to that would you?
good going Sharon

Now that's the kind of information I love to see on the forum. Wish I had know about at lot of these things when I first became sick.
God Bless,
Big AL:-D
I've been seaching but I can't find it. Any link?
when i applied for disability benefits it was a quickprocess because of als diagnosis and monies were retroactive to time i stopped working. i however did not have any supplemental insurance and seeing as i am under 65 seems i just dont qualify. good luck.
SSDI rules for ALS

I am so sorry to hear people have had such trouble getting social security disability--it is one bright spot where ALS people get some specially deserved treatment. We had a good experience and my husband had it in no time, retroactive to when he stopped working.
Here is a link to info on the new 2003 SS rules pertaining to ALS. If the link doesnt work, just go to the ALSA website and type 'social security' into the search option at top, you will get a bunch of info to read. good luck, Beth Disability.pdf?CFID=1699070&CFTOKEN=64098557
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