Old 01-28-2010, 01:21 AM #1 (permalink)
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Default Rapid/Atypical ALS

Not sure if anyone remembers me or not; came on here around sept/Oct about my dad. well he's gotten much worse and is on a vent now. He can barely move his arms and can move his head side to side, thats about it as far as mobility goes. He was walking and talking in June and so this has been a huge shock for us; having a hard time coping.

He was transferred to a nursing home because medicare hasn't kicked in yet, which is one of my questions. We were always told it was a Teri claim and processed quickly but now finding out that there still is a 6 month wait for medicare, instead of a 2 yr wait. They are saying 6 months from diagnosis. So March 1st he'll have coverage and we can get into a better facility. The nursing home he went to was terrible.. he was transferred there after being in the hospital for 3 months when is respiratory system really declined. ANyway, so he was just transferred about 2 weeks ago and we are finding the care there TERRIBLE! They aren't answering his call bells and sometimes he can't find the call bell and had to use his scratching stick to bang on the wall and no one would answer.

I'm a nurse in NY but he refuses to come and let me take care of him so I come here as often as I can to check up on things and visit. My grandparents are here in tx but can't take care of him without help so we are all in a holding pattern waiting for medicare so we can get more equipment/help and take him home.

So. I don't even know what the point of this post is; maybe just to vent some frustrations (no pun intended). He has his days were he just wants to be sedated and asks or morphine every 4 hours. And other days when he's awake and talking and making jokes. He refuses to eat most days and refuses a peg. I asked him today if he's refusing to eat because he wants to die because if he's giving up, there are more humane ways to do this and if he wants to fight then he need to eat and needs a peg..... He said he's "still thinking about it" and wouldn't say which way he was leaning.

This whole thing is just freaking terrible. I'm so angry today and just frustrated. We had to transfer him BACK to the hospital yesterday because we found him unresponsive from being oversedated at the Nursing Home, and his white count was found to be about 28 in the ER so they admitted him and he's on heavy duty antibiotics; they think it's PNA but not sure because of the ateletasis in his lungs on the scans; makes it hard to tell.

ANYWAY, so they want to transfer him back to the nursing home with a picc and IV ABX and we are fighting them tooth and nail about going back. We don't understand why it's taking so long for the medicare.

Another question I have is; if and when his medicare is active, will they send help at home? Can he get a portable vent to go on the back of a powered wheelchair? The social worker said something about him being able to be on a home vent vs. a hospital one... I have no idea about those things. I just don't know if we are at a typical stage in als or not or what we can get as far as help, or what. I just feel so lost. I can't even get my thoughts or words to come out straight right now.

I apologize for such an unorganized and rambled post. I guess the most I need right now is just some support and prayers. please and thank you.
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Old 01-28-2010, 01:49 AM #2 (permalink)
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Default Re: Rapid/Atypical ALS

Hi, I'm sure sorry to read about your problems and your dad's rapid progression. I read in one of your other posts that he is only 52, still a young man. This kind of rapid progression is unusual in younger people, and is more common with bulbar (mouth) onset. But it sounds like that is the last area that will be affected for your dad, it is hitting everything else instead.

I can't answer your questions about Medicare coverage, hopefully other people will be able to. What I read is that Medicare should kick in 5 months after disability, which is the date he had to stop working. Now I'm not sure what happens if you stop working and then later get the ALS diagnosis, which I think is what happened with your dad. Possibly you will get some retroactive payments from Social Security. But really you want the Medicate coverage. Maybe you can check again with the social workers at ALSA or MDA and see if they have the same information. I know people here have had all kinds of different experiences getting coverage, it seems like mistakes are common. But if there is any chance you could expedite the Medicare it sounds like that would be worth looking into.

That's great that your dad's spirits are good enough that some days he is up to joking around. That shows real courage in the face of frightening changes. But it is understandable that he is still working on the decision about whether to press on. I hope he does decide to get the PEG, then when Medicare kicks in he can hopefully have a better quality of life.
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Old 01-28-2010, 09:41 AM #3 (permalink)
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Default Re: Rapid/Atypical ALS

i had to leave my job in march because i lost use of my hand. i filed for social security that very day. i wasnt diagnosed until July, however; because I became disabled before i was diagnosed, social security went from the date of my disability, not my diagnosis; i.e., disabled in march, received my first check in September. so sorry to hear about your dad and his rapid progression. God bless!
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Old 01-28-2010, 12:15 PM #4 (permalink)
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Default Re: Rapid/Atypical ALS

First I want to say how terribly sorry I am that your Dad was diagnosed and has progressed so rapidly. My Dad was diagnosed in Feb '09 and passed away in Aug '09. It was hard to keep up with his needs because he changed rapidly so I believe I know how you are feeling.

My Dad already had Medicare at the time of the diagnosis so that was one layer of stress that we did not have to wade through. Here is a link to a thread where others have discussed their experience in obtaining the disability/Medicare benefits in case you have not come across it yet. link

As far as what Medicare covers, I found this Medicare website helpful. You can put in your state and the specific thing you are wanting to know in regards to what Medicare covers such as home health, durable medical equipment (vent, wheelchair, bed, etc.), nursing homes (skilled nursing facility care), hospice, etc. link

In regards to taking him home. Medicare will only help with intermittent skilled nursing care, aide, therapies and equipment but will not cover 24 hour care or respite care.

The difference between a home health aide and respite is that a home health aide will come in a few times a week and assist with bathing or dressing but does not stay for blocks of time. Medicare covers this only if there are other skilled services such as a nurse or therapist also coming to the home.

Respite is when someone stays for a specified number of hours to assist or relieve the caregiver. Medicare does not cover this.

Medicare does not pay for long term care at the nursing facility level. It has limits on the number of days covered in a skilled nursing facility. You can review those limits on the website should he need to stay at the nursing facility level of care.

If you have specific questions, please send me a PM and I would be glad to help.
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Old 02-22-2010, 09:07 PM #5 (permalink)
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Default Re: Rapid/Atypical ALS

Thanks for all the info; I guess the notification feature isn't working because I had no idea someone replied to this. Dana, sorry about your father; it's been an emotional rollercoaster for us all and for it to be so rapid/sudden has been awful. Just as we were getting used to the diagnosed and planning for the future, he just daily was loosing his ability to do things, day to day we could see a change for the worse. Even in the last two days, his speech and swallow have just rapidly deteriorated. I feel for your loss as I struggle through this now and pray for those who have been through this, are going through it and will in the future. It's an awful hand to be delt and we're trying to make the best of it day by day.
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