New Dx for spouse last week

[sw3708]

I'm in shock from the diagnosis of ALS my 39 year old spouse recv'd last week. We have kids in high school and middle school.

Right now I am scrambling to find the right questions to ask for our future planning. Any advice on the questions to ask of employee benefits (there is short term and long term disability insurance from group coverage) as well as a life insurance policy that is able to be converted to a private plan.

I'm just worried about the $ of it all. He is the main income and I don't want him to spend any more time at work than absolutely necessary but we don't want to make sudden changes and disrupt our living situation etc. if we can help it with good planning.

Any advice on benefits/pitfalls/things to ask as we go through all these meetings? I'm so overwhelmed with grief I worry I won't ask the right stuff. Thanks

 

[Nuts]

SW, I am so sorry to welcome you here. ALS is a punch in the gut, but there is life after diagnosis. It's just hard to get past the ever returning waves of grief. You have found a wonderful group of people who will educate and support you--welcome to the family. There are stickies in the General Discussion area where members have compiled answers to most of the immediate questions you have. Please read them over and then ask anything at all that you still have questions about.

The first question we ask is if your guy is a vet, because there are benefits available through the VA if he is. There is a sticky listing those benefits.

You need to read over or have HR explain to you the provisions of your particular STD and LTD plans. It's good that you have them. The stickies will explain about accelerated SSDI and Medicare benefits, but of course Medicare only covers the PALS (person with ALS). Insurance for the rest of the family is an issue.

Please try to take a deep breath. We are here for you and will both offer suggestions and answer questions. I don't know where I'd be without this group.

Hugs
Becky

 

[affected]

I'm so sorry you have joined us

As nuts said, we have some great information stickies at the top of the general forum that will help start to answer your questions on many fronts.

Try to educate yourself, but be kind and don't try to look to far ahead or read stuff that is too scary. I scared myself stupid in the first month!

 

[Lkaibel]

I read way too much stuff that first month. Anticipatory planning is great, but give yourself a little time to adjust too. I am very sorry you have joined us, by yes there is life after diagnosis.

 

[Nikki J]

Hi really sorry to welcome you. Find the disability policies and read them until you understand them thoroughly. They are probably available through his work online benefit account. A common issue is that whatever his ssdi benefit is will be subtracted from his longterm benefit once ssdi kicks in example his long term benefit is 2000 , ssdi is 1000 he will get 1000 from each not three thousand. If this is the rule it is what it is but best to be prepared.

Health insurance will be a big issue for the family if he carries the insurance. You can presumably cobra for now but he will get medicare when ssdi kicks in. You should look into aca ( obamacare) options. If your income qualifies perhaps medicaid

Make sure you find out exactly how you can continue life insurance when the deadlines are and confirm this information a couple of times. You do not want to lose it because someone made a mistake.

 

[scaredwifetx]

I ditto what Lenore said. I also read and tried to do to much in the beginning. Yes, it is very important to stay ahead of the disease but the first few weeks are just so shocking and sad. You will also need to give yourself time to adjust. The very first thing you will want to do is to apply for disability if he is no longer working. If he is working does his company have a medical leave policy?

Does he have life insurance through his employer? If he does, it may have a clause for disability and may mean he wont have to make the payment. Make sure to read and understand the policies.

I am sorry to welcome you here but the guidance and understanding you will find here is invaluable

 

[lgelb]

Sorry that you find yourself here, SW. You have gotten good advice.

I would only add the need for your husband to have white space during this time -- it's a devastating diagnosis for anyone but 39-year old guys are seldom used to introspecting their own health and mortality. Let him know (not necessarily in words) that whatever, whenever and however he wants to express himself to you or someone else is fine. As to when/how he leaves his job, he probably has some ideas already and you are getting more info on the financial aspects.

The kids are old enough to Google, but you should be prepared for their questions and/or silence, at unpredictable intervals. They too will need to process. I would inform their teachers in due course as that information is helpful for them to know.

I wouldn't read too many threads here beyond the one you started, for now. Your current to-do list is pretty important as is, as is being with your family.

Best,
Laurie

 

[sw3708]

Thank you all for your time and responses. And thank you for your kindness. I found my way to the stickies and I am making my list of questions.

 

[Lkaibel]

Best of everything to you my fellow Minnesota CALS. The shock is so rough. I think we both turned one corner after that first 30 days and then another just a few weeks ago, at about the 60 day post diagnosis mark. It helps big time that we are blessed by a slower progression thus far, but I think I think we are slowly adjusting to those three harsh letters now.

 

[frankb]

So sorry. Two very big points have been made already. One, if hubby is a vet there are great benefits that he should qualify for (60 percent of ALS patients have a military background). Second, if hubby has life insurance with his employer he must absolutely continue to carry that company sponsored insurance once he stops working. Don't let the employer tell you that it can't be done because it can. Hire a labor relations lawyer if necessary. Again, so sorry. Also, contact your locals ALS chapter. They are a wonderful source of information and support.

 

[Nikki J]

Where did you get that statistic Frank? It seems unlikely. The registry ( which is not at all inclusive granted) says 23 percent. It is true vets have twice the rate of ALS. However only a minority of the population has served -24 percent of men and 2 percent of women according to what I just looked up

 

[gooseberry]

I am so sorry you are joining us. I have a 9th grader. Counselling helped all of us thru the journey.

Take a few minutes and breathe.

A few things from me.....care for the rest of the family. Try to make sure you and your kids get time away from als. I am not saying leave your hubby behind but just take a little time so you and the kids can clear your heads.

Keep a binder with all your hubbies tests results and office notes. It helps when you need to go to the doctor.

Lastly, enjoy life as much as possible. Travel, make memories, take pictures.

 

[frankb]

Interesting, Nikki. The 60% figure was picked up from the Forum some time ago. Will have to investigate further. Thanks for the query.

 

[Nikki J]

I think I found the thread. I questioned it there too. https://www.alsforums.com/forum/general-discussion-about-als-mnd/21998-region-lots-als.html

I did not find it on the ALSA site as the poster claimed. i think she misread something

 

[frankb]

made a quick check and found an ALS Assn post dated May 11, 2005 that reports "men and women with any history of military service in the last century are at nearly 60% greater risk than men and women who did not serve in the military." don't believe this is where I picked up this tidbit, but it could possibly be the source of the statistic and over time could have erroneously been interpreted as 60%of all ALS patients. interesting.