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SLAUGHTER1555

Distinguished member
Joined
Jul 12, 2015
Messages
107
Reason
CALS
Diagnosis
05/2015
Country
US
State
Oh
City
cincinnati
Good morning Cals and Pals so woke up hurting so bad think my fingers one on each hand is kinda sprang. It's hard to hold things and if I pull or rug at anything it hurts so bad. I already had GERD but lately it's been bad probably due to improper eating and stress eating lately. I don't know how much more of this I can take physically, we don't have a wheelchair van we have a Buick Lacrosse that I transfer my non mobile pals in and out of. It had become extremely difficult to the point we had some stRangers had to help get him off the ground and back in the car due to him not being able to stand.

He really think he can keep doing things this way smh and he can not. Today we're supposed to go to the grocery store and he wants to use a transfer board to get from the car to an electric grocery cart!! Really! He said let him try to transfer himself smh he can't even stand his hands are starting to curl a lil it's like you can't do this baby.

I mentioned before he goes to the chiropractor 3x a week well I told him I can't due it anymore, I told him in a loving way I am not going to continue to brrake down trying to do everything he wants. I talked to our local ALS person and told her and she agreed no one who has ALS can be transported in a car like the way we're doing it! It's not normal! I'm to the point I'm ready to call it quits seriously we have no help at all.

Because of his income can't get any home care services but 1 hour for bathing, his daughters have car issues so no one can come get him and they have lil kids like oldest is 5 so they can't be here to help physically. I have no help to handle him day to day. We're supposed to move to Atlanta with his son in June or July so we can get help but I don't think that's what the son really wants.

More and more a nursing home is the solution that will help us financially and me physically but he does not want to go to one cuz they take all your money to pay for the facility. I don't know what to tell him but I can not keep doing things this way.

I've been sleeping on the couch while he sleeps in his recliner I can not tell you how bad my body hurts I told him I need to go back in the bed. He has a hospital bed in the room too but can't sleep in it don't know why but he has trouble sleeping in it.

I feel a lil bad because I don't want him to think I don't want to help him or try all things possible to make him better but to me going to the chiropractor 3x a week makes him feel good but it is not going to cure ALS or health his muscles. Until we can get a wheelchair van I am not going to anymore appointments if it's not life threatening or a medical necessity. I told him I don't want him to think I'm violating his rights cuz he have a right to go to a chiropractor but I have rights too. I am honoring my vows but it does not say I have to kill myself in the process.

I hope I'm not wrong for feeling this way. I need to get to a doctor myself but can't afford the co-pays and I have to get someone to sit with him. Until I can get my health checked out I'm done tugging and pulling. Something has to give and as much as I love my husband i truly don't know how much more of this i can take. :cry::cry::cry:
 
Slaughter,
Instead of going to the grocery store (and you know you can get deliveries, right?), why not tour a facility and get the real deal on the money, with him?

If he's not going to use the hospital bed (and I do think walking through what's wrong with it could make it better), why don't you?

Have you asked about a script for in-home PT, to get a regimen started at home instead of at the chiro? Insurance will pay up to a point.

Is there no transit or paratransit where you are? If you are looking at moving, that would be an important factor to base it on.

Best,
Laurie
 
"More and more a nursing home is the solution that will help us financially and me physically but he does not want to go to one cuz they take all your money to pay for the facility. I don't know what to tell him but I can not keep doing things this way."

That wasn't the case with my mom. The home was paid by insurance, and didn't touch the estate.

My reading on this says that it is no longer true that homes make you sign over all your money. You should visit some places and ask that question right up front in plain terms and let them give you the straight scoop.
 
Slaughter,
Instead of going to the grocery store (and you know you can get deliveries, right?), why not tour a facility and get the real deal on the money, with him?

If he's not going to use the hospital bed (and I do think walking through what's wrong with it could make it better), why don't you?

Have you asked about a script for in-home PT, to get a regimen started at home instead of at the chiro? Insurance will pay up to a point.

Is there no transit or paratransit where you are? If you are looking at moving, that would be an important factor to base it on.

Best,
Laurie
Hi Laurie and the machine the chiropractor uses don't think it can be done at home and the PTL we had didn't do alot. The Chiropractor adjust him with that machine and it makes him feel be he says it allows him to move his hips better but when we go back he's stiff again. And the transit we have charges 10 to 30 bucks a trip depending on where your going. Most of our appointments are not in our county and you can only use the services within the county. We have applied for all services but because he's not a veteran and he's not 62 no one will help plus the income he gets they say is too much smh but after our bills we don't have money for food for the rest of the month. It's so sad there is hardly any help for Cals who have to quit jobs to care for their pals. But unless you are dirt poor no one can help smh just said!
 
Skilled nursing homes (SNFs) are either funded by Medicare/ other insurance short-term (as in a stay after hospital discharge), long-term by Medicaid or privately. If privately, it's a monthly fee like a lot of other things. You don't pay the fee, you're out. You're paying for a bed, not a home.

The "buy-in" arrangement where you pay an upfront fee and then monthly is for a different level of care/housing (CCRC) that I don't think we are discussing here.
 
Skilled nursing homes (SNFs) are either funded by Medicare/ other insurance short-term (as in a stay after hospital discharge), long-term by Medicaid or privately. If privately, it's a monthly fee like a lot of other things. You don't pay the fee, you're out. You're paying for a bed, not a home.

The "buy-in" arrangement where you pay an upfront fee and then monthly is for a different level of care/housing (CCRC) that I don't think we are discussing here.
He has medicare so they only pay for in home aide for help with bathing him and that's an hour. If he needs any other care he would probably have to go to a long term care facility that's approved by medicare. I was looking at some of the Medicare facilities online and I have slowly mentioned to my PALS about it. If we havery no choice to go this way he needs to prepare his mind for this.

I don't know a lot about all this medicare stuff as I am a ways off from receiving it :) and it's so many rules and do's and don't smh it gets a bit confusing. Our ALS person Pinky helps us alot with what medicare will and won't do.
 
Slaughter, you seem to be presuming that Medicare will pay for his going to a SNF, and in your current situation, they won't. Medicare does not pay for custodial care. When you see an "approved list," that means that Medicare recipients who are eligible for transfer from a hospital and for a limited period can go there. It doesn't mean that just anyone can. So if you are talking to your husband about this, it's best to be realistic about the options. Please consult Pinky ASAP if the link I've embedded is confusing in any way.
 
Thanks Laurie I did not know that so if I got to a point and I could not longer care for my PALS medicare won't pay for hI'm to stay in a care facility? What would I do?
 
Sorry guys all this medicare stuff is so confusing don't me to come as dumb I really appreciate all your help thank you.
 
Regarding your GERD, I have been suffering with it too, and I have found that drinking a cup of chamomile tea for a few days (no more than three) really helps settle things down. Mine gets much worse with stress, which is probably also causing yours to flare up, and I was on strong prescriptions for it, which didn't help. The tea helps!

Good luck with the rest.
jen
 
Just to clarify, when Nikki says "protection of the spouse," she means of the spouse's assets. This is the site to check your eligibility in Ohio.
 
As always you ladies save the day and make things so easy but after reading a thread on nursing homes and remembering what they were like when I worked there, in think I will pass on considering a nursing home. Long as we don't have to go out the house as much were ok. Just have to wait til we can get a wheelchair van.
 
What about getting Hospice care in the home? That can take a lot off you.
 
To protect my grandma's money from totally being taken from her before she went into a nursing home. We put a bunch of her money into another relatives name in a account so they couldn't wipe her out. She willingly signed it over to them when she still had her mind. None of the money was touched and was then used for continued care for my grandfather who survived her by a few years.
 
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