Struggling with caregiving for my mother with whom I never had good relationship.

I wonder how easy it would be for a ninety-one yo woman to qualify for disability. It is not like if only she didn't have these impairments she would be working!

Does anyone have experience with persons over retirement age starting on disability? Just curious.

AtlantaStress, you are getting a lot of advice here, some of it contradictory. The advice I urge you to take is to see an attorney who specializes in Elder Law. That person will know what the options are in your specific location, and how best to arrange for Mother to qualify for assistance she needs.

Best of luck to you.

The dr isn't determining whether you need nursing care, he's telling ssa that you are disabled, then ssa agrees and then you're eligible to protect your spend down by depositing the spend down into the trust but you can still get it and it brings your Medicaid contribution $0. I'm guessing it might be called different names in different states but it's the same concept hth

No, it clearly states that when you die, any $ left is theirs but that's why you turn in receipts and bills the same day your money is deposited and they either pay your bills or send you a check. You don't let the money build up, you cash out the first day you can and leave only the maintenance fee so if you die you didn't leave money there.

Right, but the dr fills out the paperwork and her mom would be approved bc of the dementia and eye issues. Her mom is disabled. It's just that most people over retirement age don't think they can still be declared disabled since they associate it with getting money during working years. And Medicaid will never tell you about the pooled trust here's the one we use. Not sure if links are allowed so it's called center for disability rights in NY but every state has this thing
cdrnys website /services/pooled-trust/

Hannahhonee - You clearly have a lot of experience in this area, but I think we may be talking about two different things. Disability for purposes of being unable to work is far different than disability for purposes of being eligible for nursing home care to be paid by Medicaid. For Medicaid nursing home eligibility, you need to be deemed to require skilled nursing care, and at least in my state that determination is made by the state, not by your personal physician.

I don't know how/if the pooled disability trust fits in with that scenario - in Florida's Long Term Care info website (quoted below), only the Qualified income trust is described. As you can see, there's no way you can keep your money unless it's more than Medicaid paid out for you.
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What is a Qualified Income Trust?
If your income is over the limit to qualify for Medicaid long-term care services (including nursing home care), a Qualified Income Trust (QIT) allows you to become eligible by placing income into an account each month that you need Medicaid. The QIT involves a written agreement, setting up a special account and making deposits into the account.

The QIT agreement must:
Be irrevocable (cannot be canceled).
Require that the State will receive all funds remaining in the trust at the time of your death (up to the amount of Medicaid benefits paid on your behalf).
******

AtlantaStress, I could relate to almost everything you wrote. It is like walking uphill with a heavy sack of gravel on our back. If your mother's dementia is not advanced, she most likely won't qualify for a nursing home. Assisted living would be the only option. If her only income is SS, she most likely won't be able to afford that. It is like the more kind hearted family member gets stuck with carrying the full weight of care. It can go on for years. If you were able to find some financial help somewhere, would your mother be willing to go into assisted living? Or would she be bound and determined to stay where she is?

My mother is terribly needy. It is not a new thing. She has been a dependent person all her life -- first her parents, then my father, and now me. She never learned to drive. She would qualify for a NH, but the only way to get her into one would be by force. She is determined to die here in her house. What I do in order to keep some semblance of sanity is to get away from her every day. I feel guilty not spending more time with her, but I have to consider my own mental health. There is no one that will lend a helping hand and she won't let me hire anyone to come into her house. It is a terrible situation that many of us get stuck in. I think it is important to realize that we are as important as the person we are caring for. Our need to get away is even more important than their need to have company. If she doesn't want to go anywhere or associate with friends her own age, then it is on her. You can't donate all of your life because she won't live her own. People can still associate with each other even when there is dementia.

You don't need an eldercare lawyer. You just need a disability determination from SSA. If you google the form, you take it to her dr and then send to SSA. Around the time you mail it, apply for Medicaid. In the meantime, find the trust in your state, there's usually a few but they are basically the same but 1 might have a little lower maintenance fee or 1 might let you have 6 reimbursement checks per month instead of 5. Call or email them if you're confused but usually the forms/instructions are printable on their website. So then everything will start coming at the same time. You'll get your Medicaid approval less the spend down and the SSA papers at the same time. That's when you send a copy of the SSA paper, the application and a check equal to the monthly spend down. They approve it, notify Medicaid you have a trust and your spend down is 0. Instead, you put that in the trust each month and then submit regular bills for them to pay or receipts for items your mom bought or you bought for her and they send her a check. It's really not as complicated as it sounds. Since you already know how to apply for Medicaid, you're already knowledgeable about the biggest pain in the equation. Q

I think we have it harder than most when we take in a parent with whom we have never had a good relationship with.

It would be so much easier to swallow the negativity and verbal abuse if we could attribute it only to dementia. But when it has been a lifelong pattern, we often wonder why we put up with it.

And the neediness.... don't get me started on the neediness. My kids needed less attention as toddlers than she does now.

I wouldn't advice either a Medicaid trust or a pooled disability trust without consulting an eldercare lawyer in your state. There are lots of details you'd need to be informed about.

Don't get a Medicaid trust, get a pooled disability trust. That way she keeps all her money minus a small monthly fee

I don't know about Georgia, but in my state (FL), a person whose income exceeds the limit for Medicaid eligibility can dedicate the excess to a Medicaid trust. Basically, the excess is signed over to the state in order to make you eligible. So check if that's available in your state.

Another thing I would do is spend a few hundred dollars to consult with a geriatric care consultant in your state. Someone who knows the ins and outs of applying for services in your state and can point you to options you may not know about.

Another possibility is a group home situation, sort of like a scaled down assisted living home for a small number of residents. These can be a lot cheaper than assisted living but of course don't offer the same range of activities and services.

It will probably be difficult to convince your mother to accept any living situation other than the one she's in, where she has access to you 24/7, so be prepared for a battle. (I'm sure you're already anticipating this). It generally happens that the elderly parent becomes more and more entrenched in their expectation, as well as more genuinely needy and impaired, at the same time as the adult child caregiver is becoming more and more exhausted, stressed out, and eager to resume a lifestyle that does not revolve around the parent's needs. I hear your frustration and I truly empathize. Good luck!!!

I would consult with someone who really has knowledge of the resources in your community before taking it as a fact. Sometimes misinformation is provided. You might ask your mom's doctor about it. Sometimes, there are resources for people with Dementia and disabilities, that are not available to other citizens. I'd inquire about those.

I'd also try to keep in mind that your mom's behavior, though, challenging is not something she's doing to annoy you. It's a result of the changes in her brain. We simply can't hold them to the same standard of behavior as a person who doesn't have dementia.

I might also consult with an Elder Law attorney in your jurisdiction to see if there are any laws that require you to care or support your mother. That way you will know if there is any obligation on your part.

She can't afford assisted living. Finances are social security. I don't need her income although she has paid a portion of the rent. She is not on the lease. I've been told she doesnt' qualify for Medicaid because of the amount she receives in social security. Yes she has dementia.

You do not need to be hospitalized first, only if a rehab situation. You do need a script from doctor saying nursing is appropriate. Assisted living sound like more of what your mom needs. How are her finances? Can she pay assisted living? What about you? Do you need mom's income to remain in your apartment? Has she been paying a portion of the rent? Is she on the lease? Is she eligible for Medicaid? Does she have dementia?