Where do I go from here? ALS diagnosis yesterday.

Meliamon, my suggestion is contact Team Gleason aka Steve Gleason Foundation in NOLA asap. 2nd, If your mother is still on the younger side - so below 65 which is the usual age to apply for MediCARE - since she has ALS she can actually apply for and be eligible for MediCARE before age 65 as ALS is a “special category”. I’d suggest that yalllook into doing that for her health insurance. Having her on Medicare will make it a lot easily for her to get services as almost all hospitals & their hospital run clinics (Memorial, Ocshner), therapists will take Medicare for insurance. She may want to do that rather than go enroll on hospice. ALS can go for years and beyond the 6 month or less window that an initial hospice evaluation/ admission if I’m not mistaken eligibility is based on.

The special category aspect on MediCARE tends to be under the radar for awareness. ALS and ESRD qualify at any age. FWIW it is very much why you see DaVita and Fresenius free standing dialysis centers nowadays as most kidney disease = ESRD = on Medicare & lots under age 65. Plus Medicare pays at least double what Medicaid does.

How paperwork for early MediCARE exactly done, that I’m not sure about. But the Steve Gleason Foundation should be able to help you & hopefully someone there actually walk you through the process. Plus as it’s in our area (Gulf Coast) they should know of resources nearby.

Do you remember him? He was a safety with the New Orleans Saints, got sidelined with ALS. A powerful documentary on him “Gleason” was at Sundance right b4 Covid hit. Go to his foundation: TeamGleason.org. Very straightforward webpage. They have FB as well. Appears they do loan outs or arrange for adaptive DME (durable medical equipment) as well, which is something families with ALS end up needing and switching out as the disease progresses. Info on support groups in NOLA & Northshore. Pretty sure there are support groups along MS coast, like in BSL and the Pass. Bet there’s folks over in OS. Seem to tie into Saints fan base for volunteers, so a win-win. (PM me if you run into a wall)

First slow down and take some time to learn everything you can - there is no need for anything to be decided right away, average life expectancy after diagnosis is 2 to 5 years and some forms of ALS progress more slowly.

Please sign her up to receive SSI or SSDI with social security. ALS is one of the many serious illnesses that falls under the SSA Compassionate Allowances list. These illnesses are typically fast tracked and automatically approved by social security. You would need details of her illness and the doc who diagnosed her. Ssa will send the necessary paperwork to the doc.

https://www.ssa.gov/compassionateallowances/index.htm#!

https://www.ssa.gov/benefits/disability/apply.html

Your mother needs to start making decisions now. ALS can cause locked-in syndrome. It is a horrible disease and she needs end of life directives in place before she cannot make those decisions and choices. What a cruel and heartbreaking diagnosis for her. I get not wanting to accept it but for her sake she needs to because death is the only positive of this disease.

You need to meet with an Elder-Law specialist to get yourself organized. Emergencies can and will occur, and the residential boyfriend cannot legally make decisions or be responsible for her care unless there is paperwork to designate him. Do you know him well enough to do that? Mom needs an advanced directive, and he will need a copy of that in case he needs to act as your proxy.

Mom's denial doesn't change your situation. Ignore it. Do what you need to as her POA to keep her safe and healthy as long as possible. If she can't discuss the inevitable decline, you know her well enough to know what she wants without her spelling it out. Do it that way. If there aren't funds to keep her home when she needs full time care, plan for placement when needed. Don't ask her. Just be prepared for the inevitable.

Has she been with her "boyfriend" for along time? He may be more invested in her care than you realize. Meet with him, without her, and make your assessment. Do they own a home together? If it is Mom's home, he needs to know how to prepare for his own life without her. If it is his, you can't plan to keep her there without his commitment. Renovations will be needed as well as 24/7 caregivers.

All of the family will need to know and understand what to expect. Give Mom a little time to process, then speak to close family members confidentially telling them how NOT to talk to Mom about this. Let them talk to her about everything else, and give her the illusion of normalcy for a while longer since she seems to need it. This will give her the chance to tell them in her own way when it becomes unavoidable.

God bless you all with strength and peace.

Time marches on with this cruel disease. She may deny but the progression is real. While she is cognizant, she can refuse hospice. You may not yet know that hospice does not cover the custodial care but only a few visits for a couple of hours each week.
If she chooses a ventilator when she gets worse, she will still get to be the driver of her care. Be proactive and learn about the limitations of Medicare. Learn about the process of Medicaid and start to look at nursing homes for the future. Do this in the background. The reality for just one 24 hour caregiver is over 200k out of pocket per year. That is if you can find 4 or 5 full time caregivers who will always show up to work. Plus she will have to hide anything of value
Ideally, depending where you live, one of your local hospitals may have a specialist where every ALS patient is treated. Those doctors will keep it real with their patients about the process.
She wants to stay home. You need to determine what is your stance on becoming a 24 hour care giver which may be too much for you. It is OK to tell her that is not POAs job. You can tell her that you can help her with her payments, hiring of care if she has deep pockets or assist her in choosing a nursing home. Remember that you can ask the doctors assistance to file paperwork when she needs a higher level of care. Just keep it honest in your perception of reality. Your reality is quite differnt than hers. Keep telling her so. We are not talking more than a year or two here.

Definitely get that second opinion. My MIL got an ALS diagnosis from the University of Penn Medical Center in 1995. Her primary sent her to Boston for additional testing. No ALS. She is still alive at 87 years old.

Are you with your Mother now?
Were you with your Mother when she got the Diagnosis?
Is the man who lives with her informed? Have you spoken to him.
If you are not there then the important thing is to GO THERE. By the time you get there your Mom will have had some time to absorb this if that is her choice. You can assist her in making an appointment and go with her to the clinic mentioned. There she will get counseling on her options. If she lives in a right to die state then that is something to discuss as well as palliative care and hospice options, as well as treatment options.
You will need to be there with her to help make these decisions. Question now is what is your own job status. Can you leave? For how long? Can you afford to be where Mom is for a month or for two?
Push is going to come to shove. Your Mom is going to need to be in care. No "boyfriend" is likely to be a 24/7 caregiver and the need for respirator (or refusal of same and hospice) may come quickly. That means 24/7 in facility care. That means understanding her assets and finances as she will pay while she has funds, then go on medicaid.
I am so sorry. This is a dire diagnosis.
Importantly you can do almost NOTHING from being where you are, some states away from your Mom.
Try to at least catch a breath.
Go online and access all associations involved with ALS. There is almost certainly support groups on Facebook, and I even found them for Lewy's dementia when my brother was diagnosed.
Anyway. One day at a time and one thing at a time. Right now you are in a bombing blitz.
Again, I am dreadfully sorry.
I hope others here have some ideas for you. I almost feel bombed myself, and without a clue of what to suggest or say. This is, you are right, complete shock.

Sorry for the rough diagnosis. I'm not surprised if she's in denial, etc. That's OK. Let her have her moment. Eventually, she will not be able to ignore the symptoms. Perhaps her boyfriend will step up to the plate, maybe not.

What are her current symptoms? I don't know if she's advanced enough to consider palliative but especially hospice.

Is your POA activated? Or only when she becomes incompetent? Mine for my mom had to be activated by her doc saying that she was incompetent.

I agree with others that you should make a visit out to see her, if you haven't been there very recently. See how she really is and see what's up with the boyfriend.

Everyone wants to stay home but it is not always feasible in the long run. Home caregivers can certainly be used for some period of time. The first thing I would hire is a cleaning person. Look at what else your mom might have issues with, and get those addressed.

Best of luck.

Don't think Mom needs hospice at this time. You won't get anything but a Nurse checking in every so often and an aide for an hour 2 or 3x a week for bathing. The family does most of the work. And since Mom is in denial, I would not even mention it. Yes, she will eventually need it but I hope by that time she is in care.

You need to read up on this disease. Its very debilitating. The last time I saw a Church member who had it he was in a wheelchair strapped in so he could stay upright with his oxygen tube. His wife had to do everything for him. She chose to keep him home but she was also a nurse with a support system. Mom will eventually need to be placed. Her care will be too much.

The first thing you need to do is find out how Mom stands financially. The above facilities u mentioned are probably private pay. Medicare does not cover room and board only the care. Medicaid usually only pays for Long-term care.

You and boyfriend need to sit down and figure out what you are willing and not willing to do when it comes to Moms care. Can she afford an aide? Her doctor really needs to make her realize what is going to happen and that it won't be right to ask family to take on the care she will need. There is no cure.