No definite diagnosis of ALS yet

[KrisTie H.]

Okay so my husband has not had a definite diagnosis yet, that being said, I think it's obvious to me and our family doctor and the Neurologist know what we are looking at.

I don't think I can fool myself any longer I've got to start preparing now.

Finally got him to start using a cane. The problem is that his work does not know anything about this yet. We are afraid that they will let him go and that's the only insurance we have. So, he isn't using his cane at work. He is still driving and I think he should probably not be, he was a horrible driver before so now I'm not sure if it's him or the ALS.

Finally got an appointment with the University of Utah ALS clinic. We will we get a definite answer then or is it more of "it could be"?

I have never ever been in any situation like this and I'm scared outta my mind. I can't get him to talk about end of life treatment or his wish's in any way. He won't do a living will. We have our own business (small janitorial co) and we sub contract for another company and she has already said once he is diagnosed she wont allow him to be on the job sight. That's what we pay the rent with and utilities.

I'm just so desperate to talk to someone that is just so uncomfortable that all they wanna do is change the subject.

 

[Atsugi]

Re: What's next?!!

Man, KrisTie, that situation sucks! I'm still holding out hope for a better diagnosis for you guys.

You're doing the right thing by preparing, even if no one else is helping you do that.

 

[KimT]

Re: What's next?!!

It does suck. It's bad enough to have to wait but horrible when nobody wants to listen. You need an outlet to share your fears, frustration, and any other emotion. Holding things in might work for some.....it didn't work for me. I cried a lot. This is a safe place. I hope, with all my heart, you don't have to stay.

 

[scaredwifetx]

Re: What's next?!!

It does suck a lot and the first couple of months are so hard. My husband was also diagnosed while working and had to leave after a few weeks. Disability is quick so the first day he is no longer working.

The income issues just add to everything else. Your husband will not want to move forward with decisions or preparing as fast as you. It is so very hard for them. My husband still avoids it. Call the local ALS association and they will help you with so much as well as everyone here.

Thoughts coming your way!

 

[KimT]

Re: What's next?!!

I tried to keep working but I had to stop because I wasn't getting all the other things done like compiling my long-term disability medical records and trying to figure out how much I'd have to work with upon retirement. Thank goodness I had six months short-term disability so I went out and used my sick leave. That gave me time to get everything else in as good of order as I could. I do have regrets that I didn't take a month off and just travel, visit relatives up North, or even just go to a SPA. Living alone sort of made me push to get the big financial decisions out of the way while I was still drawing a paycheck.

 

[lgelb]

Re: What's next?!!

The U should give you a definitive diagnosis. Then you can file for SSDI/Medicare so the loss of insurance won't be an issue once the Medicare kicks in.

Does your business have any disability or key person coverage? He's not a veteran, is he?

One strategy you might consider is Medicaid, if you would qualify without work income. But I understand, that won't pay rent. This is a time to take stock of all your potential financial, extended family and social assets, resources and options.

Don't worry about end of life stuff now. Your financial needs come first, and your husband needs time to adjust to this. Assuming the U is confirmatory, he will likely be depressed (who wouldn't be?) more than now, and you may need to research and formulate plans on your own for quite some time. Above all, treat him like your husband and not a patient. Keep reaching out.

Best,
Laurie

 

[Nuts]

Re: What's next?!!

No one will try to change the subject on you here, so just keep talking. You need to--it helps. Laurie is right, your husband will need more time than you to be ready to talk about things. This slams us, but our poor PALS... We go into prepare mode, because that's all we can so, and they often and understandably go into denial. It's part of the dance.

It sucks. Yes, it really, really, does.

Becky

 

[KrisTie H.]

Re: What's next?!!

THANK YOU ALL SO MUCH..............we do have short term dis and long term dis...... our business has just the insurance we need to cover in case of an accident {on the job} My daughter is gonna step up and take over his job at our business ..... and I'm unsure what kinda reaction the owner of the co we sub contract for will be.........my daughter has CP {spastic hemi perisis on the right side} and with her reaction to Andy's might be ALS i'm worried.....I'm hoping Andy can get medicare and I can get on PCN maybe ....I've read everywhere that say's he will need around the clock care and I don't know how I'm gonna pull that off either.....
they are already saying that insurance probably wont cover all of the U of U care ??? Not sure where to turn now..... guess I'll just wait for the U of U appt... and see if they can help me with future plans........THANK YOU SO SO MUCH.......................................

 

[lgelb]

Re: What's next?!!

Kris,
This "need for 24 hour care" thing is kind of a scary myth that I've seen a couple of times lately so I'm going to dive in a little.

It is true that most PALS lose mobility and need someone else to do things for them whenever they need it. But that is not nursing care. If someone can eat or has a feeding tube, has BiPAP if they need it, is transferred in and out of bed/wheelchair/split leg toileting sling using a lift, it's not a movie of the week situation where someone needs to be hovering at their bedside 24/7 pushing drugs or adjusting machines (and most are not bedbound till the end).

PALS sleep, eat (via mouth or tube), engage in whatever activities they enjoy as long as they are able, which is usually approximately -- and often exactly-- their lifespan. I don't know if I expressed this very well, but many spouses here are taking fine care of their own. And some of those wives/husbands are still working in their own businesses to some extent, although it is very challenging and things will never be as they were.

So it's not going to be easy, but you will find the routines that work best at different stages of the disease. Your husband isn't dropping into a void where his care passes to someone else at some point. You are a couple and a family, now and always.

Best,
Laurie

 

[KimT]

Laurie,

I know your post was meant for Kris, but it means so much for me to read it. I remain amazed at the dedication you give to this site and those of us who find ourselves here.

 

[KrisTie H.]

Re: What's next?!!

Thank you Laurie,I really am amazed at the amount of care and concern this sight has for everyone facing and living this same battle....I know WE will get through this. I'm just so scared but I know {kinda like child birth} LOL that when each situation arise's we will know what to do at that time........I'm pretty tough but this is uncharted ground for me. I hate that I sound so selfish I don't mean to! but I keep thinking what happen's to me when this is over? and what will I ever do? our 1 yr anniversary is coming up on the 14 th of February. and my thought's are all with the excitement of preparing for the festive wedding on the MOST romantic day their is....And how Andy cried through the whole ceremony, We had finally found each other and neither of of would ever face this world alone again..........We where so happy with the prospects of growing old together. And all the thing's we would look back on and laugh at....I'm sorry i"m rambling on and on ....... anyway take each day as it come's right?! back on task........we hadn't thought much about life insurance and I'm having an issue with my conscience.... he hasn't been DX so everyone keep's telling me stock up now on his life insurance don't be silly and wait then your gonna loose everything he has worked so hard to build.......is it lying if they don't ask about ALS or MND??? me niece told me "they don't ask you don't tell" and you don't KNOW anything yet............ Am

 

[KimT]

Get the life insurance now. Answer all the questions truthfully and don't worry about what they don't ask. Insurance companies make great profits by spreading their risk among mostly healthy people.

Feel free to ramble all you wish. That's what we come her to do.....and ask questions.....and get support.....and figure out what to do next......and love one another through it.

 

[lgelb]

It's hard that this is happening so early in your lives together. That is true of some other couples here, one of whom decided to marry post-diagnosis, and I'm sure they'll have thoughts for you. Mine, based on marrying someone with a genetic disorder and therefore never having a "healthy" period with him, is only that the happiness you have found and the reasons you found it are not what dies.

There is non-medically underwritten life insurance through AAA and trade associations for which you may wish to apply. They don't ask health questions.

But for policies where there are health questions, if you skip anything, they will likely find out eventually via national databases like the MIB and records requests when something happens, if not before. Then you can be sued, lose any premiums paid and get no benefits. It's likely for those, even before dx, that questions about any nervous system problems and/or recent medical care will yield answers that disqualify you. But you can look at the apps to see what possibilities there are.

Best,
Laurie

 

[KrisTie H.]

Thank you ........I'm so happy I found this sight.......THANK YOU THANK YOU........................