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15 others in the US are in the same position. Still being treated by eye doctor.
my brother wants her placed in AL! She is currently with him in PA, but I am in NY! He doesn’t want her there anymore.
She doesn’t want to go to AL! I could take her in my small home but not sure I can take care of her needs along with my husband's help. I have arthritis, so my stability is not good!
AL would cost between 5-7,000 month. It’s self pay. So when her money runs out, do the places kick you out? I may get only a year of care if I can sell my mom's house fast. Which I don’t think will happen!
What do people do with limited funds?
I'm scared.

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Cally, what evidence, or who exactly told you that the med was the cause of blindness?    You mentioned 15 others suffered from this.  Have you explored the possibility of locating a firm handling a class action lawsuit,  given that several others allegedly have experienced this?   What drug was this?    I'm curious, as well as concerned.

Was your father a Veteran?  If so, have you contacted the VA for help for your mother as a Veteran's wife?

As suggested, I think you should seek advice, and see if you can get in-home help for your mother since she doesn't want to go into AL.   Check with your county's health department, state as well.    If there's a local Senior Center, ask if they have free legal consultations; an attorney might be able to guide you to sources of support.
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I'm only familiar with New York rules but you can look for an Assisted Living Program (which provides the same service but is somehow different from an Assisted Living Facility).

Medicaid in New York will help pay for an Assisted Living Program when your mom's money runs out. You might start by contacting the Office for the Aging in your county and ask for advice. If your mom has any assets to speak of, you might want to talk to an Elder Care lawyer to make sure you do everything properly so she will be eligible for Medicaid when the time comes.

If your mom needs help with Activities of Daily Living (ADLs), she may qualify for placement in a nursing home. Here is a site where you can research the quality of nursing homes in your area if she qualifies for that level of care.

https://www.medicare.gov/nursinghomecompare/search.html?

The ADLs are transferring (like getting up and down from bed and chairs); Eating ; Toileting; Bathing; and Dressing.

If she will need a nursing home, you want to apply before she's out of money so you have more choices on where she goes.

It's a learning curve but just take it one step at a time. Start by consulting your local Office of Aging. This forum can be helpful too, with the warning that the rules are different in every state and one person's experience might not apply to yours. Best of luck.
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Cally5 Sep 2020
Thank you! Such valuable info!
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I think first of all comes acceptance. This has happened. Your brother cannot do the care any longer and you cannot do the care either.
Is there a class action on this drug. I am unaware this has happened with a drug that blinded people. There MUST be a settlement on this I would think. So keep on that if you are able, and certainly if any of the other victims are known to you. I would see a personal injury lawyer. There could be quite a large settlement on this one.
I would now take life a step at a time. Mom has what assets she has. She may not outlive her Assisted Living; my bro didn't even come close to outliving his funds. Don't go into the future. Find your mother the best nice place now for the best price and see her safely placed. By the time Mom has to go to a Nursing Home on medicaid she may no longer care. That was the decision my bro and I made, and as I said, he didn't come close to outliving his funds.
I wish you luck and I am dreadfully sorry. I love to read and am down to kindle with larger font in my late 70s. One eye is down for the count for the most part and I DREAD loss of eye site.
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Cally5 Sep 2020
Thank you
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Your mother could well live another decade or more. You and your husband are also aging, and your house is small. I would not advise moving your mother in with you. But if you do, I would make it absolutely clear that it is only until you can find her a board and care home, which my friend did for one of her relatives who lived to be 104!

Pennsylvania is cheaper than New York, and your mom's money would last longer for a board and care home there. Make a call to the Lighthouse and ask them if they have a list of board and care homes that specialize in caring for old blind people. You also could look for a board and care home that's halfway between you and your brother so that both of you can visit her.

Perhaps your brother will agree to let your mother stay while you research and tour board and care homes. If he knows that you are actively helping him out in a situation that he has made clear no longer works for him, he will be of great help in getting your mother to accept that she needs more care than either of you can provide and that she is moving.

I also would hire a realtor who knows your mother's neighborhood well to help sell the house.

And remember that caregiving must work for everyone involved.
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Cally5 Sep 2020
Thank you for this help! Sadly, my brother and I have no relationship. Not talking. It ended when he called the police on me and my family (Daughters, grandchildren)when we went to visit her. He and his wife didn’t want visitors! it was ugly. And my daughter got arrested for demanding to see her grandmother!
thank you!
i should say though, her arrest was because she refused to get off their property. No violence!
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You can't decide for your brother. If he can no longer care for her you need to be supportive and help him find the best solution for her.

Of course she doesn't want to move to a facility, but what she wants is not the only thing that matters.

Right now the housing market is pretty good, so don't sell it in a hurry, sell it to get the most money.

Look into board and care homes, they are cheaper and more homey, easier for a blind person to get adjusted.

I think that you should take your mom and work with your brother. It is never okay, in my opinion, to ask others to do what we will not do. Doesn't matter why you won't do it. But taking care of her will show you just why your brother can no longer do it.

I am sorry that she has gone blind and she is having to face things that she would rather not. She can adjust but, she can't stay with your brother any longer.
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Cally5 Sep 2020
Thank you!
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