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.
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.
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.
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.
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!
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
I wish I found this site it 5 years ago instead of 5 months ago
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.
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?
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.