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My father was hospitalized last September for septic shock -- the result of a UTI not being diagnosed by his physician. During the course of that hospital stay, he was also diagnosed with Parkinson's Disease. Because the septic shock, he was extremely weak and unable to walk when he left the hospital, he was moved to a rehab facility, and ultimately to a nursing home. We finally received a referral to a neurologist in January, and he received medicine for Parkinson's. By April, he was able to take up to 20 steps with a walker and assist with transfers to and from his wheelchair. In May, my mother decided that she wanted to move him home and hire an aid to come in twice a day to help him. As a trial, when I was visiting in June, we had he come home for a day, and it became clear that my mother wasn't going to be able to care for him in that home. So we did some searching, and we found an independent living facility that seemed to be perfect for them. There was an independent health care agency onsite with an a la carte menu, so they'd only have to pay for what they really needed, and they had the flexibility of increasing or decreasing care at any time. The community has several people with advanced Alzheimers and Parkinson's, so we believed it would work. So they moved in about a week ago, and it's been a rough transition. Apparently, there's a huge disconnect between the level care that my mother thought he needed and was receiving at the nursing home, and what he actually needs. For instance, she thought he occasionally had 'accidents' in his underwear. The reality is that he's passing loose stools three times a day and requires someone to clean him up. He's also extremely stubborn, and several times he's refused to assist in the wheelchair transfers, so they're forced to bring in a second aid, which they're not really set up to do. The initial estimate was that he was going to require about an hour and a half of care of day. In reality, he's receiving 4-5 hours of care a day. Plus, my mother is being forced to do everything from pushing his wheelchair (because he refuses to even try to move on his own), to washing his face (because he doesn't want to do it). We had also hoped that they would have some social interaction by being there. But she told me today that there are a lot of people who don't want to sit with them because he drools and his nose runs sometimes when he eats. At this point, I'm beginning to think that we made a mistake by moving them there, and I'm trying to decide what the next move is going to be. I'm afraid that if we move him back to a nursing home, he's going to become depressed and won't last long. But I also know that if they move back into their house (which isn't really wheelchair accessible), he's going to require care 10 hours a day because my mother isn't able or willing to do much. She's already talking about how tired she is now. I'm 1000 miles away, so there's not much I can do in terms of helping her. And when I've offered suggestions to her, like asking the aids if they could use a hoyer lift if she provided it, she won' even entertain the idea because she doesn't want him to become dependent on it.

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How old are these guys? They sound much like my folks, mid 80s, Dad with dementia, mom with health and mobility issues. I'm 600 miles away.

My folks are still in their home, hanging on, just barely. They will be going into care at some point, Dad in memory care and mom in assited living.

If you haven't done so recently, make the trip and closely evaluate the situation. Have an eldercare professional evaluate what level of care is needed.

I suspect your dad is ready for skilled nursing care and mom may be ok in independent or assited living. You may find a facility that can accommodate them both. Maybe not living together but seeing each other daily.

Good luck. I'm dreading these issues with my folks but I'm prepared to do what has to be done.
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MsMadge - I second your amen. I found this site back in late October when I was googleing "fecal incontinance" as coincidence to this thread would have it - plus I had a dozen other issues with my mom which was taking me down for the count. Quite honestly I think I was one foot into some kind of emotional breakdown - I'd start my days in tears, not even having my first cup of coffee and not even sure of what I was crying about. When I look back at the mistakes I've made along the way - good intentioned but bad choices regarding least restrictive environment, maintaining their feelings of independence, etc., well.., I'll just say it's been a learning experience the most difficult of ways. But I'm here now and I will be forever grateful for this place and all the wonderful, caring people here.
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Use of a lift is regulated by state law in some places. In NY, you can't use one one in AL, must be in SNF. In CT, you can use a lift in AL.

She doesn't want him to become dependeent on it? Is she thinking that he's going to "recover"? It sounds as though mom does6have a realistic grasp of the situation.

I would get the advice of the local Area agency on Aging to get needs assessment and perhaps a geriatric care manager involved.
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When your father left rehab did they not do a discharge planning meeting? Typically this is done shortly before the patient leaves the facility and the staff gives family/responsible party their evaluation of what type and level of care the person will need going forward.
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bapple, I know this after the fact, but it is a big lesson learn for others who have a love one in a nursing home and thinking about bringing that person home.

A spouse needs to spend two or three days around the clock to get a better idea of what is all involved. Too many times we will visit someone for a few hours and think everything looks good, time to bring that person home... without knowing everything that goes on behind the scenes.

bapple, from what you have written, I think your Dad would need much more than 10 hours of having an extra set of hands to help out. And the house would need to be set up like a nursing home, grab bars in the bathroom, walk-in shower, etc. Lot to think about.
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A la carte places often get patients in with families who think the patient is going to improve. They don't improve and the a la carte items pile up. A Hoyer lift, means you'll pay for two aides at a time, and it requires a doctor's order. Once our mom was on a hoyer lift, she died within 3 months. Maybe you should visit and start some planning.
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Amen rainmom
I wish I found this site it 5 years ago instead of 5 months ago
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I think that it's very possible that my mother is experiencing some cognitive decline. She lived on her own for the 10 months that my father was in a nursing home, but she's clearly not able to make decisions that are in his best interest. For example, he didn't seem to have much of an issue with diarrhea on the first day and a half that he was there. The 2nd full day was when it got bad. He missed taking his meds the first night he was there because of a pharmacy issue. The person that picked up his prescriptions told me that the pharmacist was having a hard time with the prescriptions because they were handwritten and faxed in. Which leads me to wonder if his meds are even correct now. When I suggested that my mother have one of the nurses call his physician to confirm that what he's taking is correct, she found reasons to not do so. She simply doesn't have the energy to do anything other than care for herself.

I'm going to travel back there in two weeks to talk with them about the options. In the meantime, I'm going to start looking for other skilled nursing facilities in the area-- I'm fully expecting to get a phone call from the retirement community telling me that it's not working out for them.

I wish I had seen this site 10 months ago-- I suddenly don't feel so alone.
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Your poor mother. She wants to live with her husband and take care of him, but she can't. His needs are too great. It's horrible for all of you, you, her and not least him.

This is so hard to solve. If you put it to her hypothetically, that say Dad can't live in the ILF with her what would she want to happen in that case, would she have any other ideas?
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Churchmouse, that's a great suggestion on how to approach the subject with her. Thank you!
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