Who can care for her? Help?

[HarlequinHeart]

My mother is currently being hospitalized for dehydration, severe pain, high calcium, and lack of eating. She had a PEG put in place yesterday as she had gone without food for over a week before the decision was made.

At this point the nurses seem to be hinting at sending her home within a week or so, but they're quite vague about it for now. There is no one who can care for her at home, medicaid denied her back in January, and she is only 63 and can not qualify for medicare.

What do we do?

She is completely immobile, save for the inch she can move her right hand, and her legs are stuck in the sitting postion. (Therefore she stuck laying on her back, and her legs will not unbend. They have not straightened for months, despite physical therapy.)

I am absolutely terrified for her to be sent home. She was sent to a nursing home back in January after a severe UTI brought her back to the hospital, but insurance would only cover three to four weeks before they sent her home again. She lives with my step-father in an apartment, but he is a truck driver who is gone upwards of twelve hours a day. (He has three days off intermittently, but it's still not quite enough. I will also note he had mental instabilities before my mothers diagnosis and isn't entirely capable of fully caring for her at this time, although he does his best.)

I am completely at a loss for what to do.. I spoke with someone at a Hospice facility and she basically said our only option would be for someone to quit their job and watch her full time. We have no one capable of doing so. So, our only other option seems to be taking turns, but there aren't enough people to make this possible either?

Please give me some help in this matter. Have you had a similar situation, and if so, what did you do to overcome it?

[smwelder]

no matter your age .if you have ALS you are fast tracked for ssdi and medicare. your als clinic has a social worker to help with medicare. also your congressman can play a big part in fast tracking things

[cukita99]

smwelder not true im 56 n also turn down 4 medicare n ss. so i pay caretaker out of pocket.

[LizT]

if you have a definate diagnosis of ALS- you get approved for medicare. is there a reason given why your mom was denied?
Or is that she has medicare, but her income is too high so she has to pay out of pocket?

[HarlequinHeart]

Upon further discussion with my step-father it seems she was not entirely denied, but rather told that her insurance had to fully run out before they'd even give a full response. Now they say it will take about forty-five days after applying to get an answer, but I suppose that's better than nothing.

I'd also like to note that my mother has refused to take Riluzole, or to even consider it. Insurance will not cover it, and we simply can not afford it. Is there something to be done as far as getting this covered? Will medicare cover if she is approved?

[HarlequinHeart]

Originally Posted by smwelder

also your congressman can play a big part in fast tracking things

How do we go about having this process done? As far as I understand it we were told to wait as long as everyone else, regardless of the ALS?

[abbas child]

Unless you've been employed enough in the time period (last 5 years, for instance) before getting a D X, making a certain amount per quarter (there are some here who know the rules well), Medicare isn't available until age ?62 at least. Cukita--I wasn't eligible either. If I need full time caregiving, Phil will have to pay for it... and keep on working in order to do so.

[HarlequinHeart]

Originally Posted by abbas child

Unless you've been employed enough in the time period (last 5 years, for instance) before getting a D X, making a certain amount per quarter (there are some here who know the rules well), Medicare isn't available until age ?62 at least. Cukita--I wasn't eligible either. If I need full time caregiving, Phil will have to pay for it... and keep on working in order to do so.

My mother hasn't worked in a very long time, but my father has. Does his income count or is it per individual?

[10steps]

If your mother doesn't want Riluzole then don't worry about it. Medicare does have perscritpion plans that cover it but really whether or not to take it is her decision.

[HarlequinHeart]

Well, I think cost may have been her main concern, so hopefully she won't be denied! I'd at least like her to have the option without the concern of money, if she should choose to take it.

[stephie]

HarlequinHeart,
I am very sorry about your mother! I'm sorry to say that Medicare does not cover any home health care. My husband has Medicare as his primary insurance and he is also covered under a private family policy, but neither one will pay for home health care. He is also paralyzed and uses a feeding tube, but we are getting by without full time help. We pay $600 a month just for a couple of mornings a week and that is all out of pocket. Like you, I can not afford to quit my job. On mornings that we do not have home health care, I get him up and ready for the day before I get ready for work. He is home alone for a few hours until his parents stop by. They start the feeding tube again for lunch and stay until it is finished. Then he is home alone again until the kids get home from school . With his comfortable power wheelchair, mounted computer, and the T.V., he does all right.

[abbas child]

Medicare pays only to the individual who has worked until a certain age. I'm not eligible, whereas my husband would be since he's been working. As was said above, however, it still doesn't pay for home health care as I understand it. But nor does our health insurance.

[HarlequinHeart]

Originally Posted by abbas child

Medicare pays only to the individual who has worked until a certain age. I'm not eligible, whereas my husband would be since he's been working. As was said above, however, it still doesn't pay for home health care as I understand it. But nor does our health insurance.

Yes, she would have to be 65 in order to apply for Medicare, however Medicaid may be an option?
It's impossible to get a hold of anyone to help explain Medicaid benefits and requirements, can any of you give me some insight?

[abbas child]

Call your local Social Services and ask. That's what I did in regard to Medicare. I don't have a clue about Medicaid. You also might do a search on-line. My husband had done that prior to my phoning, but we wanted confirmation. I would expect you could find the qualifications for Medicaid the same way.

[abbas child]

Held up for moderation...