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After 2 years, we have an answer for my Mom's symptoms. After full MRIs, blood work, Neuro exams, and the EMG, it was confirmed yesterday.
We are all in shock of course, but as we look at the symptoms, it seems to make sense. My mother however, is in denial. She does not believe it, we don't even know how much she retained of what was told to her regarding her options. Last night when I spoke to her, she was still undecided about taking a med that was prescribed. She told me not to call anyone, because she does not want help. She lives with a man (not her husband) and when I explained it would be too much for him she was not really moved by that reality.
I am trying to get some information here about next steps.
Do I begin with insurance? Deeming what kind of care she's eligible for? I'm thinking palliative or hospice, would I be correct? I have POA, but I am out of state. I am unsure of where her boyfriend stands in caring for her, but I think he is realizing it is too much for one person to do alone. She has an option to go to an ALS clinic and hour from her home, which she said no, and there is an online option called Synapticare, which she also is ambivalent about.
Her decline is definitely happening, and while I know she has rights to refuse, surely we have some say correct? She wants to stay home. We'd like to make that happen, and it seems like maybe we could with a diagnosis and palliative or hospice care approval? I'm a jumble, so thank you for any help.

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I would start looking into home health aides or nurses, as it is likely that she will need these very soon to help with her basic care and hygiene. Eventually she will probably need to be placed in a nursing home or assisted living facility, and the process of finding one can take some time. You may need to find one that is located far from her current residence; if she lives in a large city, the nursing homes or assisted living facilities located nearby may be expensive, and you may have to look in smaller cities or even out of state for reasonably priced facilities. Try to get a power of attorney for both healthcare and finances, if you still can; you may have to seek legal guardianship for her if it is too late to obtain a power of attorney for her.
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Get a second opinion just to verify. Register with the local ALS Assoc.
Apply for Medicare ASAP is not already on it.
Fill out POA for health and financial ASAP. Don't wait. Things can happen quickly (as they did for my husband) and you need to know what her wishes are relating to feeding tube/ventilator/skilled nursing care if she ends up on a ventilator. In home care is very expensive if it gets to that point.
Get in touch with a social worker either thru ALS Specialty Clinic or primary doctor. They can help navigate thru insurance. Every ALS journey is different. The symptoms and progression vary but it all ends the same way. I've been the primary caregiver for my husband and it's not been easy to watch his rapid decline.
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Meilamon Mar 2023
I am so sorry to hear you are experiencing this too.
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You probably don't have a lot of say in the matter, at this point, if she doesn't want to try the suggested medicine. Perhaps get her housemate to talk to her about giving it a try. By telling her he won't be able to handle it, maybe it put thoughts in her head that she's about to lose control over her living situation.

As long as she appears to be cognizant of her surroundings, most medical providers will do as she wishes and without the hospice or palliative care you are thinking about. With the decline, there may come a time when you can help her and roommate decide next steps. Why not let this diagnosis sink in a little over a period of time, so both of them can see where things are going.

You are being more realistic while she's still in the denial phase. Acceptance is just not there yet for her. It won't hurt to start asking some questions about what kind of 'no medical intervention' is available to her should roommate reach out when things are beyond his ability.
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Meilamon: Perhaps you can garner information on ALS.org.
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They don’t qualify for hospice until a doctor determines they only have 6 months or less to live. They can live a long time with dementia. The most important thing first is to have a POA in place, be added to your moms bank accounts, make sure you know where all her important papers are while she can still tell you. Insurance won’t pay for care in a nursing home etc and soon she won’t be safe to be left alone. Start getting educated about what’s ahead.
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JuliaH Mar 2023
You are so right about getting everything legal before it's too late. I thought I was POA but that was her last will and didn't count when financial institutions wanted more. Excuse me? I'm on her checking account and been paying her bills for the last 3 years! I couldn't find a notary public to come in to memory care for the life of me to get POA, they won't take the risk due to mental health issues. I'm definitely POA of her health and care which helped when when she needed placement in assisted living/ memory care, now hospice. Such good advice,I just barely got her townhouse sold,I was facing going to court to get guardianship, so costly!! Yes, I agree, get some more information about what's to come.
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https://www.als.org/understanding-als/symptoms-diagnosis

Get a second opinion.
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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.
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my2cents Mar 2023
Excellent answer. A second opinion is always helpful. My mother went to her regular dr one time with one of my siblings. She came home with one of the l-dopa drugs and told me dr said told sibling and mom she had parkinson's. I said no, she has essential tremor - her mother had it for many years and a niece also has it. Plus no dr can diagnose parkinsons without some kind of testing. I never let her take the med and she lived to 98 with her little head bobbing/shaking just like her own mother who lived to be 102.
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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
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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.
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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)
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Meilamon Mar 2023
Thank you for such a detailed answer! I may look into a support group for family members to get more info. She has Medicare, and BCBS as well, but what she does not have is acceptance of this diagnosis.
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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.
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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.
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Meilamon Mar 2023
Thank you for this helpful advice. My niece and myself have been gaining info to be able to help her for when we need to step in.
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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.
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Way2tired Feb 2023
Will Medicare pay for the aide to come in to bathe ?
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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.
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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.
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AlvaDeer Feb 2023
Such good advice. I always thing with these things it is so individual, and some people have a plateau (such as with MS) that can last a long time. There is time to catch your breath and take it a step at a time.
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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.
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