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I have been my dad's legal caregiver for the past six years. He has a number of ailments and had to have pacemaker surgery back in May at age 82. Since the surgery, his health has declined and I had to put him in an Assisted Living facility in August. He fell twice there and I put him in a nursing home thereafter. I removed him from there due to neglect and he is back home with me. I have three siblings who have done absolutely nothing to help me with our father except murmur and complain about every decision I make concerning our dad while they have gone on with their lives. I am extremely frustrated and exhausted. My father cannot walk, barely eats and is in stage 4 of kidney disease. I cannot provide him with homecare any longer but I honestly do not know what to do. It's disheartening to see him lying in bed wasting away. He also has severe dementia. Where do I go to find adequate nursing care for my father? My dad has Medicare, Social Security, and a Pension. I reside in the state of Illinois. I would greatly appreciate any advice. Thank you.

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Google “Nursing Home Compare” this should direct you to the CMMS website. You can search for the NH in your area for ratings.

The data is often 2-3 yrs behind, however. I believe the data here is from the state survey information; infection control, staff ratios, etc.

I have found that information on the above site is somewhat unreliable but take that with a grain of salt. To me, data is only as good as the people entering it - thus “Garbage in, Garbage out”. 

You can utilize the data from this website a starting point & coupled with reviews from other sources, talking to people that have family there & touring the facility are good tools.
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Shekinah, ask one of your father's doctors about palliative care. It's comparable to hospice, but for people with chronic diseases who haven't been given a terminal diagnosis.

I've been contacting a variety of palliative care providers. It seems this is a new program, kind of a split off of hospice, and companies are still sorting out what role they'll play.

One merely offers phone advice monthly; another is only a consultant; and yet another affiliates with visiting physicians and its own home agency (but it's the worst agency I've ever dealt with). You'd want one that has at least a home care nurse and visiting physician.

Also, your father could probably use some cheering up. Your senior center might have home visitors; the VA does and might have some in your area. If he's a Veteran, I'd try that route first.

I wish I could offer some better suggestions. I've been very disappointed with the private duty companies and have almost decided to give up them and restructure the kind of care I want to get.

I was thinking today that home elder care is a field severely lacking in options. It's unfortunate that tech is such a major field, but it doesn't cater to a generation of people who really need legitimate help and not fancy talking robots or other useless devices.
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Shekinah17, an elder is going to fall no matter if they are living with you at home, living in Assisted Living, or living in a Nursing Home, falling is what they do. You could have a room filled with doctors, nurses and Aides and that elder will find a way to fall in a split second.

As you have found out, it is not easy caring for a person who has dementia and is a fall risk, plus you mentioned your Dad has other serious medical needs. Of course your siblings weren't going to help you, that would be enabling you to keep Dad at home, and I wouldn't be surprised they felt that their Dad needed a higher level of care where you wouldn't be crashing and burning from exhaustion.

Your Dad needs Memory Care. Check the various Assisted Living facilities to see if Dad would qualify to be resident.... his medical needs might be too much for them to handle, plus most Assisted Living facilities are self-pay so that would depend if your Dad can budget that cost.

A nursing home that has Memory Care might work out better. And if Dad cannot afford the monthly cost, then he would need to apply for Medicaid to help pay for his care [Medicaid is different from Medicare as Medicare doesn't pay for housing]. Find a place that you feel comfortable with, and a place that accepts Medicaid once Dad's personal funds run out.
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Why do you think the previous facility was neglectful? I think that there are no perfect facilities. When I was in search of a facility for my LO, (once for regular AL then Memory Care), I got lists from online and called them to find out availability, then made appointments to meet or just went by and toured the places, asked questions and researched them online to see about their history of violations, corrections, star rating, etc. I think most states have that feature.  I even chatted in the parking lot with family members who were coming and going and asked them what they thought.  Most were positive. 

I would think that with all the medical problems that your father has, his doctor should have some input on his needs.  Is there a place that is near by, so you can visit easily?

I also spoke with many people that I knew to get personal referrals. My aunts had lived in an AL/nursing home (in one building) for years and had good things to say, so, I checked there.
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Have you checked out hospice care? I believe your dad would qualify for that or palliative care. There is no 100% guarantee that you will find precisely what you are looking for in a facility I was lucky with my mom’s facility, but not with my husband’s. I would never have left him there long term. You can visit them, interview staff and speak with their administrators, but there’s no guarantee the day to day care will mirror what you observe during the interview. Our news paper recently printed an article which rated local facilities. There may be a similar chart for Illinois on the Internet.
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What was the issue with the NH he was in?

Did you contact the Ombudsman?

If Dad can pay a couple of years at private pay rates, he can probably get into a "better" place that will then accept Medicaid when he has reduced his assets to where he is eligible.

Are you using a Senior Care Adviser or discharge planner to look at placements?
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