New Diagnosis and Overwhelmed

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GXTrex

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Hey all. I have been lurking on these forums for a few weeks now. You all are so supportive and full of advice.

My dad was diagnosed a little over a week ago. My mom has been having a lot of her own issues, so its up to my brother and I to take care of them. He has a follow up with the doctor that diagnosed him next week, and the first appointment with a local als clinic in about a month.

I have been trying to absorb so much information at once that I have been so overwhelmed (in addition to my now having to handle all of their finances and legal issues). We are trying to get them on medicaid to get them some free at home care to help out.

My dad's first symptoms were weak wrists indicating limb onset back in February. Now he has minimal use of his hands but can feed himself slowly. He is slurring his words but is very understandable, and can walk fairly well but wobbles sometimes. He is still running around getting his affairs in order (selling his practice, signing legal documents, food shopping, etc).

Is there more I should be doing at this point? I have already looked into bathroom modifications, power wheelchairs, lifts, and more even though he is not there yet. Should I wait for his next few appointments and see what the doctors say? Thanks in advance
 

Nikki J

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So sorry Your parents are lucky to have you.

is your dad already ss age? If not there isa bill waiting to be signed by the president that will elimiate the 5 month wait for ss once he stops work

if the clinic has a social worker work with them. Or check with alsa if the don’t. Social workers will know resources and programs.

you are smart to plan ahead. I think a pwc will be needed soon. Falls are not good and if he is arm onset a walker may not be practical.

i hope you can attend his appointments with him. I would not necessarily do a lot before next week but I would be inclined to bring up the wobbling gait and fall concern especially. If he does need a pwc soon it takes time to get one
 

GXTrex

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Thanks for the response Nikki.

My dad is 68 and has already begun collecting social security. I do not believe he can collect disability at the same time right?

Luckily the clinic has social workers, he just doesnt have his first appointment there for a month. Should he mention a pwc to the neurologist he sees next week?

My brother and I will try to attend most appointments with him.

How many modifications did you make to your house? We can buy a ramp to get in the front door. I am concerned about the bathroom mostly as the door is only 24" wide and the bathroom itself is fairly small with a standard bathtub/shower combo.

Our cars also cannot accommodate a wheelchair. Thanks again for your help.
 

Nikki J

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Correct. you can’t double dip. If he is a vet though there are lots of benefits.

you can tell the neuro about mobilityand any other concerns yes of course

it is good to go to appointments. Especially the first ones

i didn’t modify my house. I moved. My sister stayed in her home though. You need a ramp, a bathroom solution and a stair solution ( if you have stairs) and a wheelchair vehicle unless there is paratransit or if he will go out rarely a place you can rent from. Get the wheelchair before the vehicle and make sure it fits. My sister did not and had to return a van.

generally decluttering and making space is good. If the house is one level that is very very helpful. Second choice is making a bedroom and bath on the ground floor. My sister managed with a stairlift but it is hard when core strength goes. The optimal bathroom has space to maneuver and a roll in shower. I don’t think a 24 inch door is accessible for any power chair. it is possible to do the transfer to a commode or shower chair outside the bathroom though

see if you can get an ot for a home eval.
 

GXTrex

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Nikki,

I will relay that to the neurologist thanks.

Luckily their house is one level (there is a basement for laundry and storage which he wouldnt have to go down to). Where did you get a ramp? Some googling shows me we could get a ramp for 3 outside steps relatively easily. I agree getting the wheelchair first makes a lot more sense. Did you use it primarily for doctors appointments? The als clinic states on their website that transportation can be arraigned so I assume that would mean wheelchair accessible.

You wouldn't roll into the shower on a powered wheelchair right? Could he get onto the commode and roll it directly into the shower or above the toilet?

Would the als clinic provide someone for a home eval or do we have to find that on our own?

Thanks a lot
 

Nikki J

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Your alsa may have grants for ramps. There are many kinds. My sister’s was built by a contractor friend.

my sister went everywhere and her life would have been much less rich without a van. Church, stores, restaurants, concerts

yes you can transfer outside the bathroom.

the clinic should have an ot
 

lgelb

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Sorry to hear about your dad.

It's not generally wise to wait for someone at the clinic to bring things up. That would be like driving with the rear view mirror. Not only should you bring up things like the wheelchair as soon as the wind blows that direction as Nikki says (the process takes time), but in between appointments as needs arise. It helps to have print and virtual folders with all tests, communications, receipts, etc.

We'll support you however we can.

Best,
Laurie
 

jonico

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I agree, your parents are very lucky to have such supportive sons. You'll definitely want to connect/register with the NYS ALSA Greater New York Chapter. We were registered with the upstate chapter, which offered quarterly caregiver respite grants to help defray the cost of aides or nurses you will likely need for your Dad. Our chapter also offered a one time $1,000 assistance grant to help with the cost of things like a bathroom remodel. A quick look at the downstate chapter's website indicates they have the respite grant, but I don't see the assistance grant. We also received $200 to put toward a 7 foot metal ramp we needed to get the wheelchair up two steps from the room my wife ended up living into the main part of the house, but I think that was through our local ALS clinic (definitely get with your local clinic - truly vital). You'll need a longer ramp with your three steps. ADA stipulates 12 inches in length for every 1 inch in vertical rise, so your ramp would technically need to be about 21 feet. We got away with 2 inches in rise for each foot in length. Her PWC handled the steeper ramp fine, I just tilted her forward or back to keep her comfortable. The steeper ramp is not an option if you will need to push a wheelchair up it at any point in time. So...we did what we had to do due to space constraints, but the 12 to 1 ratio is definitely optimal and you will have no option but to go with 12 to 1 for any ramp that will be inspected.

Try to get your hands on [commercial link removed; see Rifton site]. Scroll to the second picture down. Our ALS clinic loaned us that chair for a good four years. I showered my wife in our walk-in/wheel-in shower. She used it frequently as a commode, initially over the toilet and for a long time in her room, independent of the toilet. You can see it raises up and lowers in the back to help your Dad get up easier, and it can be adjusted to the individuals height. My wife's life would have been a lot more difficult without that chair.

In your initial post you mentioned you were trying to get your Dad on Medicaid. That is definitely worth a try. Nothing ventured, nothing gained. Do you mind sharing how you are pursuing it? You'll will very likely need professional help with that and a reputable Medicare/Medicaid focused law firm should definitely provide a free initial consultation to determine if your Dad qualifies. Check with the clinic or the ALSA for recommendations.

All the best...Jon
 
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GXTrex

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Thanks for the replies everyone.

I spoke to the ALS chapter and they said building a ramp for the front of the house (and platform in front of the door) would cost a few thousand dollars. They do not have a grant. They also mentioned a walk in shower as another few thousand. We discussed a shower transfer bench but he said that is not a long term solution. Does a commode work long term?

Jon, I cannot see the link you posted, it says it was removed. Can you try posting it a different way? We are working with a elder care lawyer who specializes in Medicaid. Does anyone have NY Medicaid experience?

Thanks,
 

jonico

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Regarding the commode, yeah, didn't realize I cant link to a commercial site. Every day I frustrate the moderators less and less. :-} Just search "Rifton" and their site will pop first for you. Go there and look at the second photo down. That's the chair we used for my wife.

I'm not super familiar with the whole attorney thing, so I'm not sure if an elder care lawyer is your best bet. You want a firm that specializes, or is very well equipped to navigate the NYS Medicaid system. Although it is a federal program, every state administers it differently. NYS is on the more accommodating end of the spectrum. Don't assume that if your folks make more than the income cut-off, which is very low, or if they have more assets than you'd think would be okay, that they won't qualify. That being said, if your Dad has "a practice" that he is selling, it may be a bit of a long shot that he will qualify.

Still, a good law firm will help you assess those two primary qualifiers/disqualifiers as they relate to your specific situation and let you know what your Dad's eligibility is likely to be (search "Medicaid Lawyer Long Island" and read what these firms say about Medicaid and their services). It is possible that he qualifies with what is known as a 'spend-down' requirement. If approved with a spend-down, he would have to contribute some portion of the benefit received in the form of a monthly payment to the state. It is also (perhaps only remotely) possible, depending on your Dad's income and assets that there wouldn't be a pay down. Be sure to only talk to an attorney that will give you a free up front consultation, in order to get a no-obligation, well informed analysis of how it should all work out. Don't feel pressured to decide on the spot.

If he could in fact qualify for Medicaid, the primary benefit will be the possibility of getting aide/nurse caregiving help...whereas with just Medicare that coverage is negligible. Medicaid is also beneficial in that it typically picks up the remaining 20% that Medicare doesn't cover on things like DMEs (power wheel chairs and other) and medications. Keep in mind the whole process takes quite a while...not exactly sure, but a good several months at the very least and probably longer, these days especially. Fortunately, your Dad doesn't seem to be progressing too too fast, so the upfront cost of an attorney weighed against the potential benefit of quite a bit of caregiving help alone could tip the scales toward it making sense for him if he qualifies.

Hope that helps...Jon
 

jonico

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Oh, and the commode worked the whole time after my wife was no longer able to use the toilet and shower on her own. It will work for your Dad as long as he can sit himself on it, or as long as someone can get him on it. At some point in time you will be limited to sponge baths if you don't remodel the shower, which is totally fine. And there are certainly other ways to 'go to the bathroom' should getting on the commode become too challenging.
 

GXTrex

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Jon,

Thanks for your response. The lawyer also does specialize in Medicaid planning. We are in the process of moving all of their assets into an irrevocable trust. The practice will be transferred to my name so payments will go directly to me when its soldto not ruin their Medicaid status (obviously I will use this money to help support them financially).

Where did you do a sponge bath? Our bathroom isnt very big. Did you renovate your bathroom at all? What about ramps to get into the house?

Did you have any at home help? If so, how much did it cost and how many hours did you require? My brother and I work full time. My mom is home but is having her own issues so wouldnt be able to help much.

Thanks a lot
 

jonico

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We rarely had to do a sponge bath. I do know that in bed is optimal though, and I imagine others can speak better to sponge bathing. We renovated our bathroom with a walk-in/wheel-in shower. Search on this site for a wealth of detailed info about bathroom remodeling. We added a permanent wood ramp out our back french doors. A lift is also an option if space is an issue. Again, others will have good insight, and a search here will help. We had varying degrees of outside caregiving help, often unreliable to be honest, and it is expensive...especially if you want to find someone particularly qualified and dependable. It's impossible to predict how much help you will need, as everyone's situation is so unique...but if you and your brother both work and your Mom can't help much, and you don't really have anyone else, you will need help. Not to scare you, and this is not the case for many PALS, but my wife needed near constant care for quite some time. Your experience will be unique to you and your family.
 

KimT

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I believe every state, except California, has a five-year "look back" to qualify for Medicaid. This link might answer some of your questions and prepare you for your visit to the attorney.

 

GXTrex

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Kim,

Yes there is a 5 year lookback period. I am only familiar with New York State rules. Here, the 5 year look back period only applies to institutional Medicaid (nursing home). There is no lookback period for community Medicaid (cared for at home with aids/nurses) as of now. This is changing however at the start of the new year.
 
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