Feeling totally overwhelmed

[COlisa]

Oy, I don't even know where to start.

My husband has bulbar onset ALS. He has a PEG Tube that he cannot manage on his own anymore due to hand and arm weakness. I dress and shower, him etc. He communicates via iPhone plus an application that he can operate with just his thumb (the iPhone app is great, BTW). He can walk, but not steadily and gets worse every day, uses a manual wheelchair when we (rarely) leave the house. He wants to get a trach/vent when the time comes. He was a stay at home Dad with our kids so does NOT qualify for SSDI or Medicare. All our insurance coverage is through group plan at my work which ends soon, then we can do COBRA for 18 months. He is 47 years old now.

I have been working from home and was just laid off. I probably will not find another work at home job, so will need to not only find a job, but find someone to come to the house to be with him when i am gone, so that he can get dressed, eat via the PEG, etc. The long term care and cost implications absolutely overwhelm me. Nursing home is even more expensive than home care (from what I have read) plus none in our city will take someone with trach/vent. Also, it is my understanding that hospice will not take someone on a invasive vent as it is considered agressive life-sustaining measure.

How can I find a new job (oh, and move in the meantime to someplace without 5 million steps that our current house has), then work full time, plus get him cared for (on my own, no insurance will cover any of this), pay for college for 2 kids and retain my sanity? Probably a rhetorical question, because there are no choices here for me.

Thanks for letting me vent. Any words of wisdom would be welcome.

[indigosd]

Oh COlisa, dear God have mercy. I am so sad that we have to endure such awful horrible things! I am taking deep breaths and praying for you and yours right now this very minute. We need a miracle! Ok, SSDI and Medicare seem to be out of the picture. Have you applied for SSI [Supplemental Security Income] Medicaid, Food Stamps [now called SNAP] TANF [Temporary Assistance to Needy Families] CHIP [Childrens Health Insurance Program] to name just a few. Is he a Veteran? Have you asked for help from your community, your church? GET IN TOUCH ASAP with your ALS Chapter!! They will help you!! What state are you in? You do need to vent, You do need HELP! Of course you are overwhelmed!! How can we help you? Sending you hugs and a hand to hold!

[COlisa]

We have not burned through our 401K yet and also some savings for kid's college, so do not qualify for SSI or Medicaid, or Food Stamps, etc. He is not a veteran. We do not belong to a church (that's another story). We are heavily involved with our local ALS Association and raise money for them. Last year for the Walk to Defeat ALS we were the top money raisers on the top team in Colorado.

Thanks for encouraging words. I'm just having a bad day. Losing my job felt like the last straw.

[BethU]

COlisa ... I'm so sorry for your situation ... talk about the straw that broke the camel's back!

I'd suggest for sanity's sake, you don't get too far ahead. Anything you don't have to solve immediately can be put on the shelf to solve later.

For instance, you will have COBRA for 18 months. So, your husband and family will have medical care for a year and a half. Start worrying about replacing COBRA a year from now. For now, you and your family are covered.

You don't say how old the kids are, but they're not in college yet, so let that go for now. They may have to work a year before college, or earn scholarships, or choose colleges close to home, etc. But right now, today, you don't have to solve that.

Right now, you have a house to live in. I wouldn't worry about moving right now ... And you have your 401K to fall back on, so you will not be destitute. There's security in having a nest egg.

There are feeding options for your husband that take the burden off him ... drip systems, etc. Are your kids old enough to help with husband's care before and after school? Can they come home at lunch? Maybe you can find a job close enough for you to make home visits at lunch. And you say "probably" you won't find an at-home job, but "maybe" you will!

I'd contact MDA ... Muscular Dystrophy Assoc ... also, for financial help. They are terrific. And contact ALS Guardian Angels ... do a search on this site for contact informtion, or Google them. You'll be amazed at the practical help and emotional support Stu (the founder) will provide.

Try to stop worrying about future issues (I know it's almost impossible to do) and focus on what needs to be done today: finding a job, getting care for your husband.

I'm praying you find the solutions.

[indigosd]

This is just absolutely CRIMINAL! arrrggggg Wish I lived closer and we could pool our resources!! How old are your children? May I ask what your job was? What can you do today that will get you through today?

[asantiago]

CoLisa, that just makes me sad, I wish I could go take care of everyone who makes posts like these and needs a hand. Beth really gave you some great advice. I can only imagine the stress you feel under right now. I didn't realize a 401K would be counted against you in situations like that. Kids don't need college funds while they are nice to have, my parents never were able to save for me and I completed my Masters Degree a few years ago. There are lots of resources for kids who want to go to college so don't worry about using those funds.

I would speak to a good attorney or accountant who may be able to help you channel funds in order to help you qualify for needed benefits.

Has your husband never had a tax paying job? Are you certain he wouldn't qualify for anything at all? Is unemployment enough for you to get by on for the next year?

You shouldn't have problems getting hospice in after the vent is put in. The way they explained it to us when mom got a feeding tube is that they are against life saving measures that change the outcome of your disease. Neither a Peg nor a trach will change the outcome of ALS unfortunately so they are fine with patients using them. When a cancer patients receives chemo there is a chance that will cure him, no treatment or device will cure ALS. It may vary by chapter, but that is what ours told us.

What about taking in a couple kids for daycare on a cash basis to supplement your income while allowing you to stay home and care for your husband. I hate to advocate "cheating the system" but sometimes you do what you have to in order to get by. That would allow you to continue to receive unemployment and qualify for COBRA.

I wish I had more answers for you but know that you are not alone in this and we are all here for you.

[hopeful warrior]

COLisa,

There is no denying this is a horrible disease for any family to have. The issues we caregivers have to deal with are immense. This is an exhausting situation for everyone involved.

I am so glad you posted here. This is a tremendous sounding board for each of us. Please continue to post questions and comments. We all gain knowledge and comfort from this site.

God bless you and your family.

[COlisa]

Thanks all for the compassionate responses. Just getting a response helps know that there are people who care.

BethU - you are absolutely correct, I should only worry about what I need to solve right now. And looking at it that way, I have it pretty good. Very good insurance for 18 more months is huge.

I was a program manager for a software company based on the west coast (I am in Colorado). There is some hope that I could get a similar position at another company, although everyone seems to be cutting back.

To qualify for SSDI and medicare you need 20 quarters of work in the past 10 years. Dave worked for 15 years in high tech company before he quit to stay home with our kids in 1997. He substitute taught in the interum, but not to the level to qualify any SS quarters. Then he started experiencing slurred speech in 2005 just as he has returned to school to get his teaching certificate to become a math teacher. Then diagnosed with ALS in 2007. BTW he was the best stay-home dad on the planet, volunteered for everything at school, carpooled daily to swimming, soccer, baseball, softball, etc; coached more teams that you can name (sometimes driving the entire team to practice!) plus he did all the shopping and cooking at home. I worked full time and my job took us on a 3 year assignment to Australia, which was our family's greatest adventure. I have to admit, I was spoiled for many years.

One of my kids just started her Freshman year in college and the other is a sophomore in HS. The sophomore is a big help. I hate asking him to do things that a "normal" kid doesn't have to do, but he loves his dad and knows that we didn't choose this for him either. My daughter was a big help when she was at home, but moved away just a couple of weeks ago to go to school.

I have to admit, I am not good about asking other people for actual help. I always wonder if the "call if you need anything" is sincere or lip service and I guess I am afraid to test it. But probably, the time has come.

Thanks all for just being there and for all the suggestions and support.

[COlisa]

Thanks also for the info about hospice and vent, asantiago. I will definitely check that out. A hospice came and spoke to our ALS support group a year ago or so, and I didn't think to ask the question at the time. They were a hospice that comes to your home vs. inpatient. I will see what I can find out from them.

[brendapals]

lisa,
Damn it, I also wished we lived closer! I have a freshman in college, and a high school sophomore...and a 3rd grader!!!!!all boys at my house! And trust me, it feels weird asking my 8 yr old to fasten my bra!

I certainly feel your pain and will send up prayers for you. I was fortunate, I guess, that I worked enough to get disability and Medicare. My husband is having a tough time knowing what to do and when.

I also know how you feel about asking for help-I've never done it,but I intend to try it, Figure I'll weed out my "non-friends":razz::razz::razz:

wishing you all the best,
keep us posted,
-brenda

[COlisa]

Thanks Brenda. You made me smile, that's for sure.

This forum is a lifeline. I feel like you all just pulled me up when I felt like I was going under.

One day at a time.

[GlenBrittle]

Oh Brenda, you are the coolest Mom.

Teaching your son how to manipulate the clasps on a bra at a young age - pure genius !

Lisa , Glad that you found your smile again.

Stick around , we may be able to make it happen again.

Glen

[SandraD]

Hi COLisa,

sorry about your situation, but it sounds like you are getting some good tips. here's another: when you have children in a household, the federal food stamp program does not look at your assets, only your income and expenses. you may want to look into this, as many people in this sad economy are surprised to find that they are eligible for food stamps, especially if you have kids in the house. there is no shame in accepting this form of aid, especially under the circumstances you describe. as I understand it, they give you a debit card that can be used at a grocery store and it is pretty much indistinguishable from any other debit card. the only people who would know you are using "food stamps" are you (as the purchaser) and the cashier. As far as transitional assistance (cash aid, which used to be called welfare), I believe they examine all your assets, as well as your income.

I don't know about Colorado, but in Massachusetts, where I live, there is a special low or no-cost medical insurance program for people on unemployment insurance. In any case, if you have not found a job once your unemployment runs out and your COBRA expires, I suspect you would then be eligible for Medicaid.

anyway, additional money for groceries each week may not seem like much, but every little bit helps.

Good luck with everything,

Sandra

[indigosd]

Colisa,
I believe that you are eligble for the 35% reduction rule that Obama passed for COBRA for 9 months! Check on that!

[TRLESH]

[QUOTE=asantiago;89523]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?

[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]

[QUOTE=asantiago;89523]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]

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 dx 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!!!