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I’m coming upon 7 years without any respite for my mom with dementia. I have been doing this everyday and I’m extremely tired. My mom is difficult: she won’t wear a diaper, doesn’t understand anything, doesn’t want me to clean her up and is combative. She still walks and can eat, but everything else is impaired.


My parents (dad is no longer here) left me with no means to hire anyone nor money for care. I have been bootstrapping money and stretching the money I have for as long as I can. But I’m at the end... She has medical insurance from my dad’s job and a small monthly check. Hospice won’t assist me, they say she is not ready yet. How else can I receive help?

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Some Nursing homes offer respite care ... of course theres a cost :( ... but may you could afford a “long weekend” once or twice a month.

it would give you a few days to look forward to and possibly ease both of you into a permanent stay for her.

is there an aging organization in your community that could help direct you on financial aid issues ?
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The only way you are going to get respite if hospice won't assist is to place her in a NH. Or you can look into in home assistance paid by Medicaid, but that likely is a long shot. Start with your local AoA agency, if they can't offer the needed assistance, your last option is to place her in a home. but that will be up to you to decide whether you want to do that or not. If you decide to do that, please note it can be done, even if it appears at first it is out of reach or you are told it can't be done, there are ways to do it.
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No experience with Medicaid, but it sounds like she might be low enough income to qualify. From what I have read, there are sometimes options for facility care and in-home care. She may/may not qualify for NH, since she doesn't need skilled nursing care (not the same as care such as you are providing), but in some states a few AL facilities (she would need Memory Care) might be available. For in-home care, they may provide some funding to either hire aides to assist or pay you. That you would have to explore with various agencies (SW, Council on Aging, Elder Law atty)

My experience with hospice: my mother was already in MC, for well over 3.5 years when she had a stroke. Hospice denied, despite dementia, almost no hearing, losing eyesight and already in a wheelchair. The stroke affected her right side, swallowing and speech. They said no, she hasn't lost any weight in the last 6 months! Seriously, she just had the stroke, she isn't going to lose weight that fast. The MC nurse stayed on top of it and made them come back. She DID lose weight in those few weeks, so she was approved.

That said, hospice isn't going to help much in your situation. They deliver supplies such as briefs and wipes, can get access to medical devices, etc, but they don't really provide care, not what you need. Focus on the Medicaid and/or VA benefits (if she or your dad were in service and meet certain requirements, there is funding, but generally you can't get both - go for the one that provides the most, or take one until the other pans out and provides more.)

Seven years is way more than I would have been able to do! Hoping you can find help soon!
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LoveLea Dec 2020
Good suggestion to see if her income is low enough to qualify for Medicaid. They would pay a very small amount towards hiring an aide to assist with respite care. But the amount they pay aides is extremely low.
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Nicene: It's a miracle that you've been a STELLAR caregiver for 7 years. Now it may be time for not respite, but for facility living for your mother. Perhaps start at the town's Council on Aging to speak with the social worker about a possible Medicaid application. Prayers sent.
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get in touch with an office of aging or better yet an Elder attorney.  You should be able to get Medicaid for your mother and sounds like maybe she needs to be placed into a facility where they can care for her, but find one that will accept Medicaid.  You should not be spending your money, even though you may feel you have to.  This way you can still be her daughter without losing that feeling due to being totally drained and now the caregiver.  You have to take care of yourself or you won't have anything else to give.  Please seek help and even though you don't like the thought of placing her, it might be better for both of you.  I wish you luck with this.
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You can call her insurance company to see what they are willing to pay. But first, you need to call an agency for home care, asked how to be under that agency for caregiving and take the online course for caregiving under that agency. The insurance company your mom has will pay you for your home care position. This is if you do not want to call medicaid and want to keep your mom at home while your the caregiver. I don't know how much the insurance company pays, but it will be assessed by the caregiving agency you are working under. This way you will have extra money caring for your mother at home. Best of luck to you.
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Seems like other good answers follow, but for sure contact your local Area Agency on Aging. Every area has one. In our area there was a specific caregiver support program. This operated by having funding to get someone in the home so that the primary caregiver like you could do something or get out for a bit knowing their loved one was being looked after. You paid out of pocket, filled out a couple forms, and then would get a reimbursement check after it was all verified. I learned a great deal from our first time using it, and now the program is on hold due to covid...and frankly I would not want anyone coming into our home at this point due to that reason as well, as much as we could use some help. In initial communications and interviews by agencies I was treated with disrespect, plans were not adhered to....I let the last person leave early and cancelled the service for the amount of stress it generated which was inexcusable and felt RELIEF. That's NOT how it should go. But when someone can't even make a bed so the covers are more even on both sides....or doesn't know enough to wipe the underside of a glass tabletop to get rid of remaining fingerprints that are visible...it's just too much...especially for the cost...but do see what help is out there for you. It doesn't unfortunately get easier....
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Medicaid could very well be the answer. I spent an hour with an Elder Care Attorney. Well worth the expense. Found out my wife was eligible for Medicade from the attorney. She told me what to do and what the alternatives were. Check with Aging Care in your area, either on the local level, county or state. I've been a 24/7 caregiver for 8 1/2 years.
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I know you said Hospice can't step in yet but where I live, they are so overworked that I couldn't receive respite even when my hubby was on Hospice. I liked the advice about the clothing someone gave above. Also, I had to have medication for my husband just to keep him manageable when he got agitated. I'm so sorry for the terrible time you are going through. I also think that getting her in a hospital and then telling them that you aren't able to take her back when they talk about sending her home, is a viable option. That will cause social workers and such to step in and advise you on what choices are available because they work with the hospital to place people.
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You owe it to yourself to investigate her eligibility for Medicaid right now.

If she’s under the care of a physician, that person may able to prescribe some mood stabilizing medication that will help to manage the stubbornness and tantrums until you can see your way clear to some management alternatives.

Medicaid coverage varies from state to state, but you should e able to fin the information you need about your own state from somewhere online.

Please find out and report back here.
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It sounds like you're past the point of only needing respite. You need to be looking for a facility to place mom in. If mom has no money, she will qualify for Medicaid, so get the paperwork started for that. If you think she is difficult now, just wait, she will only continue to get worse, and more than you can handle, so best to get the ball rolling now, so you can get your life and health back sooner than later. Best wishes.
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Nicene Dec 2020
Thank you
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Check with another Hospice. Often dementia is enough to make someone eligible.
Medicare provides for Respite for Hospice patient caregivers.
Is mom a Veteran? If so depending on where and when she served she might be eligible for many services. As far as mom dot wearing incontinent products.
Remove all her other underwear from her drawers and replace with a pull up type product. If she asks about it say her other underwear is in the wash and she needs to wear these.
If she is competitive ask her doctor for medication for anxiety.
If it becomes more violent call 911 and tell the dispatcher that you are afraid for your safety and even mom's. Request transport to the hospital . Once at the hospital talk to a Social Worker about options.
You can also call your local Area Agency on Aging and ask what options there are.
It is possible that you/she may be eligible for services.
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Frances73 Dec 2020
We received an Aid and Attendance pension for Mom due to Dad's wartime service. Even though he was only in the army for 18 months she was eligible because he served during a time of war.
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I believe hospice is only for end of life care. Although you may be reluctant, a nursing home might be necessary. It will take whatever funds she has before the state will pay. Alternatively, there may be a government program to pay you to care for your mom at home. Check seniorlink.com. Best of luck to you. This is never easy.
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Mom must be eligible for Medicaid. Get that application going. On Medicaid, there may be many services that mom would qualify for.

Contact the Area Agency on Aging for help and information on what services are available and will help you and mom.
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Nicene Dec 2020
Thank you
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