Feeling totally overwhelmed

[joelc]

That is exactly the way it is here as well. Their function, here, is to help you die with as much comfort as possible. Usually takes less than a month.

 

[shelleynshaggy]

I feel so very sorry - wish I could do more than pray for you. Isn't your husband eligible for medicare? I thought ALS patients were. I was told to check into my insurance when I applied for disability coverage for him because he would be automatically eligible when we get our "final" diagnosis of ALS and our insurance my drop him. So many stupid rules. Jim has been a stay at home dad for 2 years and that is going to affect his disability decision also. Things are such a mess. But like everyone else has said - take it one step at a time. Focus on what NEEDS to be done to survive now. Yes, it is nice to have a college fund- but you have so much on your plate right now. Who knows what benefits, aide and grants the kids will qualify for due to your family situation - you may be presently suprised. But don't worry about that bridge now. The kids will make it through, even with student loans! Bless you.

 

[asantiago]

Re: hopsice remarks

You shouldn't have problems getting hospice in after the vent is put in. QUOTE]

Sorry I had to laugh a little at this. Maybe it differs from state to state, or something like that, but I called and spoke to a Hospice organization in Hawaii, where we live, today. They told me because my mom HAS a trach/vent, they can't help us. She has to need a trach/vent and refuse it before they can help us. In other words, she has to have a slow death wish before they will come in. Nice huh?

Well we were surprised by it because we had always heard contrary. Maybe some hopsice units choose to interpret the rules more logically and compassionately than others. But I am positive that's what they said I remember the conversation. They didn't consider it a life saving measure rather an avenue to make the end of life more comfortable.

 

[COlisa]

Re: Feeling totally overwhelmed - UPDATE

Thanks all for the helpful responses.

I am happy to report that I had 2 job offers last week and accepted the one with the best insurance plan . I start Monday Oct 26. Both were work at home positions with some amount of travel required, so I will need someone to stay with Dave when I am gone, but at least I feel like I can afford it now.

Things are looking up a little.

Thanks again,
Lisa

P.S. ...and no, Dave does not qualify for Medicare, even with a diagnosed of ALS, because it is tied to SSDI. He cannot qualify for SSDI because he has been a stay home dad for the past 12 years and does not have enough quarters of income to qualify for SSDI and therefore does not qualify for Medicare. It is a nice loophole for the government to deny coverage.

 

[mytwoboys]

Lisa,
I am so so happy to hear your job news. I have been following your story and felt so bad for you. I, too, feel so overwhelmed at times - my mind gravitates toward all the worst case scenarios. Reading other's advice to you helps me through my own silent (daily) crisis. I pray this all works out for your family. I really vented at husband's neuro appt this morning - he is helping to arrange some counseling (especially for me). My emotions tend to get the best of me - letting negative thoughts cloud my judgement and reactions.... I pray for all of us - every day. My husband's condition is deteriorating rapidly - he lost 20% of his FVC in 3 months (down to 41).

 

[DebbieR]

Lisa

Congratulations on your new job! That is one big worry off your plate.

 

[hopingforcure]

Congrats on the job. I am so sorry that your husband is facing this because he worked at home. I think that it is sad that stay at home parent should qualify for SSI.. It is based on credit's worked. I often thought ALS should qualify for SSI. I think that we set up the system to hurt those who try. I think being a atay at home parent is super important and it should be valued. I hope your job work's out. I am hoping for a happy time for you and your family.

 

[Kevinski]

;ike i said email me when you get the feeling.do me a favor you have my email and find out the head of the local lions club and i will get his counter part here contct him as they were a big help in helping us with renos thay we could not do,just an idea.nows the time not to panic but get help where ever you can get it.and please dont b afraid to ask as we all need help with tis disease.So please do this as a lions club telling another the hwlp you need might get some action as thr group is like a big fraternity....

 

[LauraW]

Colisa,
Where do you live?

 

[COlisa]

Hi all,
I am in Colorado.

I don't know anyone in Lions Club. Will they still help? I have never heard of anyone getting help from them here.

Thanks all!
Lisa

 

[Jeannie]

I just read your story and all the wonderful posts, and I just wanted to wish you luck on your first day of work tomorrow.
This is an amazing board that offers so much information and support.
You and your family are in my thoughts.
Good Luck tomorrow
In friendship
Jeannie

 

[letty]

Colisa,

Have you thought about having a beef and beer" fundraiser? Maybe your local ALSA office could get you started with that or maybe advertize through your kids schools, etc.. You can raise a lot of money that way. Maybe you can get an interview by your local newspaper/ trade journal to get publicity. Also businesses might contribute money too. Love, Letty

 

[handinhand]

Hi Colisa, It just breaks my heart to hear and feel the pain that we all face in one way or another... This is a good place to come for help and ideas.... I am wondering where in CO do you live? I am in Pagosa area..... Hope we can meet up ... Praying to you. Hugs, Linda

 

[Dave C]

Unfortunately i have recent experiences similar to TRLESH. We have been told that Jen's Trache was "maintenance to prolong life" and was excluded from hospice options.

I wish there was something we could do for you and your family. Know you are in our thoughts and prayers.

 

[indigosd]

Dave, OMG this is just appaling! Do we need to ALL contact our elected officials and overwhelm them with phone calls, email letters to get the system changed so that it helps us? These are the programs that we have paid for our entire working lives and they do not help us...we need a SHERO! I am going to contact CREDO and see if they can help us help ourselves. I say, we need a TEA PARTY!