My dad is in rehab for the 2nd time in 3 months after a hospital stay due to malnutrition, dehydration and covid. He also previously fell and broke his leg about a year back. My mom passed in 2015 and he just wants to die but nature won't cooperate.
We are in a cycle now. He doesn't leave his recliner, do any rehab exercises, starves himself so he no longer has any energy to hold himself up in any way, arms or legs, and elder abuse services essentially backed him into a corner to go to the hospital. I got a call from his nurse this last time that she thought he was dying. He has a do not transport order signed by his doctor, so if he refuses to go to the hospital, again there isn't a lot anyone can do unless he consents.
This most recent time I came to his place after a life alert page and he was naked, crawling on the floor, covered in butt to heels in thick feces, it looked like a sewage truck exploded in his bathroom and I had to hire ServPro to clean out his place.
He is on hospice at home as well as has aides from Agespan but it's not enough.
He also has severe spinal issues and is on enough morphine to take down a rhino.
The stars aligned and I was able to get Medicaid to pay for long-term care, his rehab facility also offers long-term care, allows smoking (the only thing that matters to him now), is local and has a bed for him after he finishes rehab. He was initially open to the idea, but now is focused on going home no matter what.
He will absolutely repeat this cycle again and we'll be right back here in 2 months, only the stars probably won't align, his insurance may not cover a 3rd rehab stay this year, and long term he may end up with a no smoking facility, no where near home where family isn't going to visit.
He's now focused only on TODAY. "I was able to walk 150 steps today with a walker". It doesn't matter if he is able to run a 5K today. In 2 months he will be unable to move again. He has no muscle from atrophy, he's been depressed my entire life, and even more so since my Mom passed in 2015 and he is ready to go and has zero interest in trying to improve his quality of life. He also has lung cancer.... probably. That's the diagnosis based on x-rays without him allowing a biopsy to confirm. But he's been smoking 2 packs a day for 60 years, so there's a good chance it's correct.
I'm told by hospice, hospital and rehab nobody can stop him from going home if that's what he wants. I'm sure lots of people have dealt with this situation, not sure there is any good answer, but thanks for reading and if anyone has any ideas I haven't thought of I'd love any new info.
Cheers, Rob
I guess the next step would be to be granted guardianship which is also not easy. I ended up paying for an evaluation by a Neurologist/Psychiatrist to have someone of authority clearly state that my mother was incapacitated and unable to safely live on her own without 24 hour care due to early stage dementia as well as all of the physical and medical issues she had at age 97. What you report of your parent's incapacity and needs doesn't seem to matter much so the professional opinion seems to be important. I used an elder law attorney to help with the process but you can do it yourself. Do a search for Adult Guardianship on your county or city website and you should be able to find all of the forms etc that would need to be submitted. I know how exhausting the caregiving role can be and how emotionally difficult it is to get your parent to move to the safer care facility when it is not what they want. Good luck
Be sure to share a copy of this posting you made with the social worker. If you can get pictures of the crazy behavior(s), that will help the APS. You can also tell his doctor to revoke the no transport document or be held responsible for whatever happens in his home while unsupervised. Get tough and don't take no for an answer.
It took a couple hours to get dad cleaned up. I was fairly new to CG and really didn't have the 'lingo' down. DH took dad out to eat(!) and I stayed behind and cleaned. Luckily there could have been a ton more poop, but it was still a huge job.
I had to throw away the recliner, and we bought him a new one that I covered in layers of chucks. The couch had been peed in, but I just cleaned that and the pile of blankets he slept on as a bed. Dad refused to wear real underwear, only thongs and he'd blow out those in 10 minutes. I was literally peeling them off of him and throwing them away, slowly replacing them with 'real' underwear.
The first time I had to deal with this I was taking some strong steps to get him placed. He refused outside help, except for me and SIL, who had been his primary CG for ages, but needed a break.
After the fact, I realized that his fecal matter was a source of bacteria that was actually dangerous to me. Luckily I glove up to the elbows, but I know his place was not 'clean'.
I made a ton of mistakes. My DH was on my case everyday to do a better job. I was also caring for my dad who had Parkinson's. Seemed many days like I was 'failing'.
Looking back, I should have stepped away and let his other son and daughter and DH take over. I was willing and stupid and this went on for months.
Only when his oncologist told him he could not go home, ever, did dad lose faith. He died 2 days after realizing he would not be able to die at home.
It's awful being the only voice of reason. Esp when it's NOT your relative and you are being treated like a serf. It took me years to overcome the feelings of being used by the family.
I'm MUCH tougher now and more aware of the ins and outs of elder care. IMHO, once you have someone who is having constant fecal accidents, then it's really time to evaluate the living situations. We waited too long with FIL. After his passing we had to throw out most of his furniture and replace all the flooring. He had really trashed the place due to feces being everywhere. And urine. My DH kept telling me how mean and selfish I was, but he never so much as put a load of stained undies in the wash.
That's not true. Hospital and rehab personnel will tell you anything to get you to take your loved one home and be your responsibility. If your father is not safe at home and doesn't have support, it's considered an "unsafe discharge" and hospitals and rehabilitation places (usually in NHs) are very much responsible. And THAT'S why they want YOU to take responsibility and take him home.
If you've found him "naked, crawling on the floor, covered in butt to heels in thick feces, it looked like a sewage truck exploded in his bathroom", then he is NOT safe to be at home. Period. Get together with the NH/Rehab facility's social worker and start discussing placement there.
If not, you will just be repeating this cycle again and again. Do you want to do that?
Every time a poster tells the OP to stop his father going home, to make the hospital staff or the social workers do this, that or the other to keep his father in care, that poster is making the OP feel responsible for decisions which are not his to make. He *can't.*
The decision is the father's. It is the father who is going to be repeating the cycle, and a very frustrating cycle it is. But it is NOT down to the OP.
The OP has a wife and two children and a job. He needs to do what a good parent would want him to at this stage of life. Having done his best to secure his Dad a safe and secure living situation, he needs to enjoy his marriage and his children. Not being God, he can do no more.
I wish him, his family and his Dad peace during this difficult time.
So massive positive strides, though I'm sure because of that he is still thinking about going home. But I have not seen him this "human" in probably a decade, even before my mom passed. There is no way he would have left his house over the past few years to go to a movie and now he's looking forward to it. Without the 24/7 care he's been getting, he would immediately fall back into his old habits.
I live 2 blocks from him and over covid 2020, I re-did my back yard, put a fire pit and TV out there and made it wheelchair accessible thinking he'd really enjoy spending time there. 2 years later and I don't think he's ever seen it. I've seen him more in the past few weeks than I probably have in the past 6 months. I avoid going to his place like the plague. I can't take the smoke, darkness, dirtiness and depression. And he won't leave his place. I'd rather drive the 15 minutes to rehab. I hope he recognizes his quality of life has already taken a big move upwards.
I checked his answering machine messages and there was one on there from building management referring to discussing a letter they sent him. I have no idea what that was, I've been bringing him his mail and haven't been looking at it. Worst case would be it's a notice he has to be home by a certain date or give up his place. That could also be best case but since I'm the one who would have to arrange to have his place cleaned out, it's something I need to find out about.
Short of that, the other option would be for him to go home with 24 hour home health aides (private pay). Final option would be to look into a hospice care center…similar to a long-term care facility, but much more peaceful as the purpose is not rehabilitation so he would only get therapy if he requests it. He would get all the care he needs, including access to higher level of pain and anxiety medication to keep him comfortable. We went through hospice at home for my FIL and it was unpleasant as the aides can only stay for a week until he was closer to the end so all the daily care, including dealing with incontinence fell to the family. Not pleasant final memories to have of their husband, father. At a hospice center, you can focus of quality visits while he is kept comfortable and all his other needs are met. If he decides to stop eating, that is his right and they will not force him to do so. All that is required is a doctor to confirm he has a terminal disease with less than 6 months to live. Even if he lives longer, most hospital centers will extend his stay as long as a physician confirms he is still terminal. Do your due diligence and research/visit the hospice centers, but this has been the answer for many in similar situations.
He is now in a long-term care facility. They take care of him. He doesn’t have any opportunity to “hoard” like he was doing. So no bugs and stink like his apartment was. But I still feel guilty that he is there even though it is truly a blessing. If I had taken him back to his independent living apartment he would have been in the same of crap situation again within a week.
He is 78. He thinks he can live on his own but he can hardly walk without a walker. He stays in a wheel chair most of the time pushing himself around with his legs.
The guilt can be overwhelming at times but he has to have help. Not the retirement he thought he would have but he brought most of this onto himself through bad life choices.
Broken hip. He's back in the hospital, he will be headed back to rehab and there is NFW he is going home again. He wasn't even home 72 hours, I didn't even have time to get all his hospice and other services in place since he went home on a Fri and Mon was a holiday.
When he left rehab, he actually wasn't doing bad with a walker, I didn't think he should ever have gone home but in my head I was giving it 2-3 months before he'd be back at the hospital, I definitely wasn't expecting 3 days.