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I desperately need help

My husband has Alzheimer’s, I work 40 hours a week, I’ve called everyone I can think of to sit with him , he wanders off from the house, has anyone have a solution,

He won’t do daycare and I’m trying my best to keep him out of a nursing home, I have no one to rely on, feels like I’m losing my mind

Comments

  • Dio
    Dio Member Posts: 713
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    Do you belong to a church group? Perhaps, someone in the congregation can help. Can you hire an in-house caregiver?

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    I'm sorry. This is tough stuff. There aren't many options here.

    If he's progressed to a degree that he can't be home alone safely, your options are hiring in-home care (either privately or through an agency), forcing the day program, a residential facility now or not working. If you need to work full time to ensure your own financial security in retirement, a residential placement may prove most cost effective than private aides on an hourly basis. If you are working fewer hours to maintain a foot in the door or for your sanity, hourly aides would be a better option.

    HB

  • Jeanne C.
    Jeanne C. Member Posts: 828
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    Care is expensive. Whether in home or a facility. But you need it. Have you met with a certified elder law attorney? Besides needing POA and other documents both for your husband and yourself, they will be an expert in your state’s long term care rules. I worked with our lawyer to get assets legally and cleanly moved into my name so I could get my husband qualified for Medicaid. People who don’t actually know will tell you Medicaid is for the poor. We’re not poor. What many don’t understand is that long term Medicaid is for the sick. In our case it covered in home care, meals, doctors and medication, and incontinence supplies. In most states it won’t cover memory care at an assisted living facility. In my state it does cover care in a memory/dementia unit at a skilled nursing facility now that he needs that level of care. So, what I’m saying is speak to a local expert to see what kind of help you can get. I’m sorry you’re both going through this.

  • Carl46
    Carl46 Member Posts: 169
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    The Office of Aging can help you find a companion (babysitter)

  • Biggles
    Biggles Member Posts: 94
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    I have nothing to offer it’s such an awful position to be in but I hear you. We are all going through various stages all I can say is keep pushing forward and contacting and then recontacting any lead that you might find. The Officr of Aging , My Gov again and again. See if you can get all assets out of your DH and get him on a pension then he might qualify for some in house help. Could you provide accommodation for a live in trainee nurse? It’s such a hideous disease so unforgiving all the problem solving is on your shoulders. I’m so sorry.

  • Bill_2001
    Bill_2001 Member Posts: 129
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    "He won't do daycare."

    You may have to make it work. I am sorry to be blunt, but I was in the same predicament. It was either daycare or quit my job.

    Call the Alzheimer's hotline at 1-800-272-3900 and start a dialog to research options. This is a serious issue.

    Love, Bill_2001

  • housefinch
    housefinch Member Posts: 399
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    elder law attorney to possibly qualify him for long term care Medicaid

    Medication if needed for agitation

    Fiblets such as the daycare is a volunteer opportunity where they’ve requested someone with his expertise


    I wouldn’t wait too long, because he could progress to being ineligible for daycare


    don’t let the disease ruin your future, too

  • Another day...
    Another day... Member Posts: 31
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    I would love to learn more from you. My husband won't sign POA and we have three children. I fear he will need care soon but I am barely paying house, bills and sending oldest to college in 2 years. Very scary.

  • SDianeL
    SDianeL Member Posts: 973
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    so sorry. These decisions are heart wrenching. He needs care immediately if he’s wandering off. Force daycare if you must. He also should no longer be left alone. He could start a fire or hurt himself. Also start looking into long term care. Soon he will need 24-7 care and it will be difficult if not impossible to work full time and cate for him at night. If you haven’t already, file for Social Security Disability. Make sure the diagnosis is Alzheimer’s. Get an attorney to help get Medicaid. Medicare doesn’t pay for long term care but Medicaid can. Please keep us posted. Hugs

  • cdgbdr
    cdgbdr Member Posts: 55
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    Even if there is a church you're loosely affiliated with, try that. I was able to find someone that way. You may need to make him go to day care. DH is really missed about someone being here but I have to work. I have cameras for the short times he is by himself.

  • Jeanne C.
    Jeanne C. Member Posts: 828
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    I can’t stress enough to talk to an elder law attorney. Even if he’s not an “elder”. A good one will know the rules in your state AND they will be sensitive to discussions with your husband. I met with ours before I took my husband with me. I explained my husband’s paranoia and distrust. The attorney was very helpful in explaining things to my husband so he understood that we were both setting up our documents so we were both protected. Once I had the POA I was able to work with the lawyer to handle assets and Medicaid without involving or upsetting my husband. It’s hard but you need to find a way to protect your future, your family’s future, and your husband. Send me a message if you want to chat about it.

  • Another day...
    Another day... Member Posts: 31
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    I've tried everything and met with more than one elder atty..My husband won't trust anyone. I'm still working on it as I need to apply for Medicaid if possible.

  • eaglemom
    eaglemom Member Posts: 551
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    This is a very difficult situation, the stress your under is not good for you. But you know that. You are concerned for your LO and your kids, all of which is commendable.

    I'm going to ask several questions - not trying to pry, but rather trying to help you along this journey. Since your LO isn't working, does he qualify for SSDI? When he's left alone at home all day, what does he do? Watch tv? Does he remember to eat lunch? When he wanders away, how does he get home? Whom diagnosed him? A neurologist? If so, I'd try the patient portal and explain your situation. You need help and see what that office might suggest. Is he taking any medications? And will he take medications? That would come through the neurologist, to calm him. Has he always not trusted anyone?

    It is overwhelming. Clearly you need to keep your job, but can you work remotely, from home? Have you explained your situation to your employer? That way, if your late or have a call from home, they understand why.

    Take a deep breath and do one thing at a time. If you look at the big picture its too much, one thing at a time.

    eagle

  • Another day...
    Another day... Member Posts: 31
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    Im learning that long term Medicaid long term care is not the same state to state.

  • Carl46
    Carl46 Member Posts: 169
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    That's right. That is why it is vital to get advice from an elder care attorney in your State.

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    If you can't get a POA, then your next option is guardianship. It takes longer and costs more, but at the end of the day you need total control of decision-making for your family.

  • JDancer
    JDancer Member Posts: 463
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    Make sure you don't take your spouse when you go to the lawyer.

    I found the daycare rate the same as an in home companion.

    In my state, my 401 doesn't count as my husband's asset if he applies for Medicaid. Glad I contributed a lot while I was working

  • Belle60
    Belle60 Member Posts: 56
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    Does he get Medicare?

    Medicare has a new program that can assist with funding in home care if he qualifies.

    Guiding an Improved Dementia Experience (GUIDE) Model | CMS

    We are in the middle of applying for this program. They will pay 2500 a year towards care and have a lot of supportive services available.

    Is he a veteran? There are also a lot of services the VA.

    I still work and worry about this all the time.

  • Stesfaye
    Stesfaye Member Posts: 1
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    Both my DH and I have a good sum of money in our 401k accounts. Is it possible to qualify for Medicaid with large assets?

  • JDancer
    JDancer Member Posts: 463
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    Varies by state. I suggest a CELA, some specialize in qualifying for Medicaid

  • allit
    allit Member Posts: 94
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    i came across a podcast the other day by an attorney who gave a few reasons why trying to manipulate your assets to qualify for medicaid might not be the best strategy. if you speak with an attorney, see if they have an opinion on that.

  • ​fesk
    ​fesk Member Posts: 479
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    allit, do you have a link to the podcast or can give more detail?

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more