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And I use respite every 90 days. But I need more than a break every 90 days. She has Parkinson’s.

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It may be time to look into using that LTC insurance for a facility placement.

The things you desire to do won't be around for ever, grandkids grow up fast and it is important that you are there for them.

It is okay to put her in a facility that provides the care she needs. We weren't created to care for a grown human like we do babies, else we'd be born full grown.

It's not like you abandon your loved ones when you get them professional care, you still visit and call and most importantly you advocate for them.

She will not be happy, but quite frankly that doesn't mean you have to give up your life and your relationship with your grandchildren to cater to her wants.

Find a lovely facility that has the level of care she needs and start being her daughter again.
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I retired early in 2015 to care for her. She has Parkinson and dementia and cannot walk. I had Colon cancer and resectioning surgery a year ago, iron infusions and stay down in my back lifting her. Yes I am glad she had LTC but I am stressed out. I want to be her daughter and not her primary care taker. I miss all my grandchildren’s games and activities.
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JoAnn29 May 2019
I understand. Maybe looking at a LTC facility would be better. All her needs will be met and all you do is visit.
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Do you work? Because if not, I think you are doing pretty well. There would be a lot of us who would appreciate 40 hrs a week help. Then every 90 days respite.

Like said, if she is on Hospice, there is some respite provided. Please, appreciate that Mom looked ahead. Not all of us had parents that did or could afford to. There r those who quit jobs to care for a LO and spend 24/7 caring for them. With no help.
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Thru hospice mom can spend 5 nights in the hospital every 90 days.
She does not qualify for Medicaid.
She has LTC which I use 8 am to 4 pm Monday thru Friday. 40 Hours per week. Other help is paid out of pocket.
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Every LTC insurance has it's own terms. Your insurance contract or policy benefits summary (probably listed on the company's website) should give you more details. I have found that creating an online account with the insurance companies where it shows the benefits your policy provides very helpful.

What is providing the respite every 90 days? What duration is the every 90 days respite? How do you use the 40 hours per week when there's in home care from LTC insurance? Would your mother qualify for Medicaid and some additional in home care hours that could provide?
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Medicare will pay for respite care when LO is on hospice. A certain number of weeks per year is allowed. If she has a long term care policy that may provide additional time. Check with Medicare and read your policy.

And (from Medicare website)
Short term respite care . If your usual caregiver (like a family member) needs a rest, you can get inpatient respite care in a Medicare-approved facility (like a hospice inpatient facility, hospital, or nursing home). Your hospice provider will arrange this for you. You can stay up to 5 days each time you get respite care. You can get respite care more than once, but it can only be provided on an occasional basis.

https://www.medicare.gov/coverage/hospice-care
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