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Increasingly hard for her to take care of herself.

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I hope you have made some progress since your post. I was wondering how much of a decline did you see?

Some people with neurodegenerative disorders hire a live in caregiver. If you have private insurance, I would check what the coverage is for physical therapy and occupational therapy and home health aides.
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This is where you come in.

Time for you to start helping her with the things that are difficult or impossible for her to do.

That way you can hire someone else to come in and help with the heavy lifting type things that you are not able to do.

I have to say that this is where the rubber meets the road in a marriage and really shows what type of character the well spouse has.

Here's to finding the best routine to ensure that your wife gets the care she requires.
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mstrbill Nov 2019
That's a bizarre answer. Not sure where you get the idea he isn't helping already. Parkinson's will progress to where he will not be able to properly care for his wife. It may have reached that point already and both are suffering for it. There are limits to what all of us can do, even the best of us and the most healthy and able. We don't know how healthy and able OP is.

To the OP, Jeff, don't ever let yourself feel guilty for not being able to do things you weren't able to do. Focus on what you can do right now to help your wife. If that means placing her in a home because that is the best place for her to be taken care of than you need to do it. Best wishes.
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The words affordable and home care don't equate or belong in the same sentence. There is no such thing, if done legally.

Home care for my mom alone would have been about 10K a month. Time to look at facilities which are also expensive, my area assisted living starts at about 3K a month, memory care at about 4.5K a month, nursing home about 10K a month. Care Homes are a good option where you can often get an increased level of care for less than nursing homes or memory care at 3.5 K a month, to start. Nothing about long term care is really what could be considered affordable.

See an elder law attorney about getting wife on Medicaid so you do not become impoverished.
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Start planning the transition to a SNF or Nursing Home. Start planning transitioning to Medicaid. There is no affordable home care. It runs around $25 and hour and your wife will need eventually 24/7 care. Meet with an elder law attorney if you have some assets (property, savings, insurance policies) so you can plan your future. You will need to spend down what you have on the home care workers while protecting part of your assets for your future until she qualifies for Long Term Care Medicaid. If your state has in home Medicaid care, look into that, but most likely it won't be available 24/7 and your wife will need that level of supervision. Start looking into nursing homes and get her on waiting lists if necessary. I went through all of this, but started too late. Parkinsons's is progressive and it will hit you all of a sudden like a ton of bricks if you're not prepared.
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Jeff,


I read in your profile that your wife has Parkinson’s.

Was your wife young when she was diagnosed with her Parkinson’s disease?

I took care of my mom for decades with Parkinson’s. She just turned 94. She lived with me for over 14 years.

Her neurologist has said that if a person is diagnosed at a younger age the disease will progress more rapidly. My mother was diagnosed at an older age, unlike Michael J. Fox who was diagnosed younger and the disease progressed much quicker.

Mobility is a huge issue as Parkinson’s progresses. Home health helps greatly if you can get the doctor to order it. Insurance does pay for it. Occupational and physical therapy designed for Parkinson’s patients can improve balance and strength.

Best wishes to you and your wife. I have witnessed this first hand and it’s so hard to watch. Parkinson’s effects everyone differently. Meds can help but as you know there is no cure.
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Jeff, ditto to suggestions already posted. If possible please have your wife checked for a UTI, which may be the underlying cause of her confusion. It is easily treated with antibiotics. If you are concerned about affordable care, you may want to consider letting go of aging in place. Getting you and your wife into a reputable facility before you need to apply for Medicaid may be something to consider. You will have all the help you need and be together. You will be in a community of peers and have a social life. You won't have to make the decision to move in a crisis or when you are overwhelmed and stressed and exhausted and depressed from trying to slog it out alone. Once you are in a place you desire and then need to apply for Medicaid, you cannot be kicked out. You will get all the same care but will need to share a room. That's the only difference. Wishing you solutions that work for you both!
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Isthisrealyreal Nov 2019
You can be kicked out if the facility doesn't accept Medicaid.

It is very important to clarify how the facility handles the transition from self pay to Medicaid.
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Start with the doctor who treats her for PD. They will often have resources. Then, call Medicare if she’s on it and also her supplemental if she has one. Finally call your local Area Agency on Aging to see if they have any resources for you. But, he aware that home care isn’t cheap. The only way it might be affordable is to only have someone come in a few hours a few times a week.
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Sorry to hear that your wife is getting worse.
An option is to pay an agency to provide Caregivers and yes it is costly. If she is Medicaid she may be eligible for a few hours a day.
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