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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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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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bapple, regarding your Mom and thinking she is experiencing some cognitive decline.... stress can mimic cognitive decline. It happened with me, I thought for sure I was getting dementia after trying to help my parents for many years, but my primary doctor assured me that major stress can cause the same symptoms. And she was so right.

I remember back when my Dad had a heart attack, the hospital wanted him to go to a rehab center, but my Mom insisted she was bringing him home, that she could take care of him. And her word was the final word.

My Mom was so surprised when we brought Dad home to their house hat he could barely walk even using a walker, his legs were like jello due to the heart attack. Thus, that meant Dad couldn't go upstairs to the bedrooms or the full baths. He slept on his recliner and Mom on the sofa.

My Mom was upset that Dad had trouble walking to the kitchen for dinner. At least daily my sig other had to go to their house because Dad fell and Mom wasn't able to lift him up. Really? Mom even didn't like having the rehab therapists and nurse come to the house. It made her feel like she wasn't doing "her job" to make her husband well. So much denial on her part. Oh, I forgot to mention, Mom was 90 at the time.
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Churchmouse, that's a great suggestion on how to approach the subject with her. Thank you!
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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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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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Amen rainmom
I wish I found this site it 5 years ago instead of 5 months ago
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bapple - I don't want to be the voice of doom or seem like a smart ass - but I have to say - don't count on getting the fecal incontinence under control - if it could be controlled then no one would have it. Of course the obvious exceptions would be if somehow its being brought on by a side effect of a medication or he has developed food sensitivities- but even then we're talking diarreha which while an issue - can be a bit more manageable by getting to the bathroom in time. Given your fathers current condition, the Parkinson's and his inability or unwillingness to help ambulate- well, I think you may have a losing battle on your hands. For many the line in the sand between home care and a facility is incontinance - especially fecal. You are smart to be working on other options - and while it is important to consider your mothers feelings, I think you're also going to have to accept you can not accept her judgement - clearly she is unable to assess or accept the new reality - and who can blame her, really - up to a point when it becomes unrealistic- again. Her life is at that point that all elderly dread - decline and dependence. I'll be honest - you've got a long, hard road ahead of you. Educate yourself, get legalities taken care of, figure out what your role is - how much you can do and want to do, and fasten your seatbelt. Lastly - a final positive point - you are so head of the game having found this site. Whatever you will be going through, I promise you someone else here already has - and the wealth of advice, support and compassion that you will find here can get you through some pretty tough times.
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Independent living is not the right setting - even assisted living might not be enough

My mom is in memory care since February and it has been a nightmare - bad fall and 4 UTIs and I'm now paying for 1:1 caregivers a day and it is still 50-50 if she'll have a diaper on when and no one helps put her to bed or bathes - staff is overwhelmed and a lot of folks sleep in their clothes

Please get necessary paperwork for both parents if you don't already have it POA and healthcare - if you can't oversee their care then get a geriatric case manager to help

I wouldn't wait 3 months to make a move as it sounds like they need help now
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Has your mom been evaluated for cognitive decline? Something you might want to consider.
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Thank you all so much for your feedback.

The last year has basically been a series of mismanaged issues. It started when he was experiencing lower back pain (but was still able to walk unassisted). His primary care doctor sent him to a series of pain specialists and surgeons, with no relief. He had also been exhibiting Parkinson's like symptoms, but his primary care doctor felt that they needed to address the back pain first. It wasn't until he went to the ER in excruciating pain that someone realized that he had a UTI and was in septic shock, close to death.. Apparently the primary care doctor had never even done a simple urinalysis time. He pulled through, but the trauma to his body caused the Parkinson's to become more pronounced and he wasn't able to walk or care for himself, and he was experiencing frequent hallucinations. So he was sent to a rehab center. His primary care physician refused to refer him to a neurologist. He didn't make much progress, so my mother received a call one day saying that medicare would no longer cover the rehab, effective the next day. Her only option was to move him into the skilled nursing unit at the same facility.

We finally convinced her that he needed a new primary care doctor. That doctor immediately referred him to a neurologist. They adjusted his medications and started seeing some physical improvements and the hallucinations stopped. So they got medicare to pay for some additional rehab (while he was still in the skilled nursing facility), and he was soon able to walk small distances with a walker. Medicare then stopped the rehab because he was able to walk. So there was never a discussion about what would happen next, because he was in skilled nursing.

A few months after that, my mother decided that she really wanted to bring him home. My siblings and I tried walking her through all of the scenarios and helping her understand how much help she would need, but she was adamant that she could get by with only 2 hours of help a day. When I traveled there on vacation, I asked her to bring him home kind of as a 'trial'. (She had already told the nursing home that he was coming home and given them the discharge date). By the time I got him in the house and settled in a chair, she realized that she couldn't handle it and being in their existing house wasn't going to work. She insisted it wasn't necessary for him to stay overnight. My father realized it too.

Because they wanted to be together, we toured several independent living and assisted living facilities. The independent living community that they decided on seemed ideal because all of the meals, housekeeping, laundry etc. would be taken care of. Plus they had CNA's on site that could help him with transitions, bathing, etc.

I'm still shocked at how little she understood about his needs. Freqflyer-- you're absolutely correct. If she had done what we originally asked and had him spend the night at home, she would have realized what she was getting into. And she doesn't seem to understand that he's only going to get worse, not better. Now the situation is worse because if he moves back into a nursing home, he's going to realize that it's where he's going to be the rest of his life. I don't think he'll last more than 2 years.

But taking him home is going to require some major changes... Honestly, with naps, he's only awake 10 hours a day, but he's going to need an aid every waking hour. I don't think assisted living is much of an option, because he's basically got all of the benefits of assisted living right now.

They're in a 3 month lease right now. IF they're able to somehow get the fecal incontinence under control, and if he's willing to make some effort to help himself, I think they'll be o.k. for a while. But, since my mother doesn't seem to be able to take the steps necessary to address those issues, I doubt they'll improve. The facility has arranged for him to start physical therapy again next week. But in the meantime, I'm trying to come up with Plans B and C. I'll take your advice and start reaching out to geriatric experts in the area to get their opinions.

Thanks again for everyone's feedback!
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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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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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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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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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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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