Hello everyone,
My son has been severely ill for 23 yrs and only med compliant for the past 8 because a care team gives him his meds everyday and it has been 10 yrs since being in his apartment with a care team. Before this long hospital stays or group homes as it would take a year for him to recover on meds.
So…anyone experience or have suggestions for how to help him with the following:
He does not use a garbage bin but simply drops or sets things on the floor. Has not showered or had clean clothes since I saw him one year ago. His fridge is filled with open moldy cans and other rotten food. His kitchen is covered in moulding food. Ants are in the thousands crawling in his sugar etc so he has to eat them if he makes coffee. Fruit flies in the millions. The smell of him is so bad it’s hard for me to take. I almost think he would be better living outside because there is fresh air and rain to clean things…
Thanks for any and all suggestions.
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Are you saying that his care team has been visiting him daily at his apartment? For 10 years, without doing anything about his living conditions? Wow!
How about his landlord, his neighbors? Has no one complained?
I’m sorry I have no suggestions, other than asking your city’s health department to step in. I’m surprised they haven’t been called by someone already.
Gardencat, care team tries he refuses. Low income housing and once per year they inspect and he agrees to let them and help them clean so he does not lose housing.
They have someone come to do kitchen only once per week but it did not get done the Mon before I saw it! My guess is he says no when they come?
I have just moved back from away and yes this has been like this from beginning. My goal is to put something in place before I die as what I see is the way it would be. For me to do it all will not be the best solution either and it would take time to get to that point.
I did not look at all of the apt. Could not bring myself to do it. I left and wailed in my car for 30 mts. This is the best of care and apparently he has it.
Thank you for your thoughts…
Well, you couldn’t live like that, and I couldn’t live like that . . . but how does your son feel about it? Maybe he doesn’t mind a mess. If the kitchen’s getting some attention weekly, that might be enough to keep him from getting food poisoning.
My son, who isn’t MI, seems perfectly content living in a sty–and I thank the gods every day that we don’t share a home. He’s always been that way. My personal theory, based on what I’ve seen of the homes of various members of my family, is that we each have inborn levels of tolerance for dirt and disorder.
Would your son be willing to see you somewhere other than at his apartment? Maybe outside somewhere if his personal hygiene isn’t good.
Good luck with this, Bloom . . . I’d be upset about it, too. And I should have started with this: Welcome to the forum!
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Gardencat, none of the dirt, garbage etc bothers him at all. He feels he has lived like that this long and it has not hurt him yet.
Seriously, gardencat if you saw it you would not believe it. If health inspection saw it he would not be living there. His apt looks just like a dumpster. Seriously it does.
He has showered for me in the past. I will say let’s go to that fav restaurant but you need to get showered with soap and clean clothes and he will. I have done the laundry for him first so he has clean clothes. I have bought him new clothes.
He visits me almost daily at my place and I put a blanket on a chair he likes. I feed him. He enjoys watching cable tv which he does not have and likes seeing family again. I am the connection to my family for him they have not seen him or talked to him since I left 8 yrs ago except when I came to visit. His dad died 2yrs ago and he saw him daily. Other than that he rarely leaves his apt or sees anyone. I am away now for a few months.
We have a really good relationship. I use humour…like the other day I said, “tomorrow please put some clean clothes on because you smell like a bum and I don’t mean the kind on the street.” He laughed. I gave him some I had washed the year before. They were shorts and new t shirt cause in the sweltering heat he has pants and long sleeve shirt on. He does not register temperature well. And he only put the new T-shirt I gave him on the next day and some deodorant so that was a bonus.
It breaks my 
Thank you for the welcome
If he’s agreeable to cleaning himself up for a visit to a restaurant, you might be able to accomplish even more using bribery. Maybe a visit from a cleaning crew in exchange for something he really wants. Disaster restoration companies clean up really nasty spaces, but they don’t come cheap.
It’s great that you’re able to use humor, and that your son has kept his ability to appreciate a joke. Your relationship with him is more important than the condition of his living space, imo.
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Just from my own experience with my own son: If I had left him to live on his own his home would have been the exact same way, maybe even worse. Not because he is dirty or likes living that way but because for those as ill as your son or mine: organization is really really hard, -almost impossible for some, even simple things that we take for granted are so hard to do with any consistency. In addition the expectation that they must do these things is an additional stress that is often more than they can handle mentally and emotionally and they just freeze.
First I would strongly question your son’s doctor on the medicine regiment that your son is on. He needs to know how debilitated he actually is in his everyday life. Some doctors put their patients on a medication and so long as there is no dramatic (or life threatening) side effects they rely on the word of the patient as to how the medicine is doing. Often if the medicine is not optimal the patient cannot give an accurate or clear account of his or her experiences with it or they just say everything is fine-- so the doctor opts for no changes and nothing changes.
Someone close to the patient that knows him or her has to observe closely and then advocate on behalf of the patient in order for effective medicine changes to be made. I had fulI guardianship of my son early on so I could sit in on his appointments and be a part of his program. If I was not the guardian then I would be writing the doctor letters letting him know everything I know about my son’s behaviors and reactions to medications. The doctor can refuse to speak to a parent directly when there is no guardianship but any doctor worth his or her salt will take communication from a parent or other family member seriously.
I know this is not for everyone, and I fully understand and appreciate that fact: But what helped my son was when I was home with him 24/7 (I was on long term disability myself) and when that happened I began working with him daily on simple things, throwing stuff away properly, looking at dates on food, making food correctly and cleaning up after. Taking the trash out the same day each week. Doing laundry the same day each week. Making a predictable routine. It was re-teaching him things he had already known before he was ill. He was like a small child again in some ways. Often I could see he couldn’t keep up or was tired or unable to comply so I did what had to be done but I always went back to him doing it and now after 10+ years he is able to keep things neat and clean and do all the basics needed. He still has off days but he can do it more often than not. It never gets too bad like it would have and plus I am still here with him. I also learned with my son the more time he spends completely alone without one other person to get what I call “reality clarification” from the more I see delusional thinking creep in. With me around he can say something outlandish and I can now say “no that’s not right” and he accepts that he can trust me on it and he moves on.
It took forever to get here it seems. He has also been on a steady regiment of clozapine and depakote for a very long time and it seems to do the trick. I also understand everyone is different --not all patients respond the same to medicines and interactions with family. I just share my story for what it is worth, if it can help okay great and if it can’t then I am sorry I can’t offer better ideas. I do wish you and your son the best though, whatever that turns out to be.
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My biggest fear for my son…
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Gardencat, I agree that the relationship between us is more important than the state of his apartment but it makes it hard.
Catherine, I live in Canada and his team is called Assertive Community Treatment Team. All staff see him by rotating daily and there is a social worker, psychiatrist, Occupational therapist, recreation therapist, nurse and peer counsellor. He is on Clozapine, mood stabilizer and Invega injectable plus others. The injectable is new for about a year now.
I have been the “bad guy” by doing all of the hospitalizations etc and his dad who was not diagnosed (bipolar) until my son was dxed schizoaffective was not able to do much regarding his care. It was an advantage that his dad was able to visit him as the good guy until he became more stable and would be comfortable with me visiting again. My point being I don’t want to be anything but the good guy now so it does not affect our relationship. I don’t want to be is professional caregiver etc. I just want to be his mom. He requires a team to care for him and always has. I am too old to be a team anymore.
He had to relearn daily living skills in the group homes too.
He is not capable of caring for his daily living needs and other than (politely) insisting he wash his hand before touching food in my house there is not much I can do. All I can do is what I can do individually only if he is willing. I think I just will have to accept that it is what it is and be grateful he is taking his meds. The system has failed our family. Many years of untreated psychosis has done its damage. Early intervention is the key.
So good to hear your son is doing well! Good for you for helping him so much. Thank you for your thoughts and I hope he continues to stay well.
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I appreciate everything you shared. I understand where you are coming from. I often wish we had the type of comprehensive health care that Canada offers its citizens but from what you are saying maybe Canada still needs a better mental health care system overall?
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Yes, there definitely needs to be improvements in the mental health system. I think that is a universal problem with its roots in stigma though. Our health care system has some issues for sure. Primarily a shortage of doctors which occurred when they decided to only allow a small number of medical students in the field many years ago. Over all though I’m grateful that everyone in Canada can have access to good doctors and care even when they are poor.
The legal system and philosophies have been a barrier to care for people with severe and persistent mental illness. You would never see someone with severe autism or dementia living in the state my son lives in.
Thanks for your thoughts!
“Bloom where you are planted”
Why isn’t the care team team addressing this???
Perhaps he is on the wrong meds, or needs to be on anti depression meds?
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Serenity,
I’m not sure why really? It’s a conundrum to me. I do know that it is not part of their job to clean. I have had to clean during his first two years with the team when moving from hospital to apartment. They let him take his meds himself and he had a major relapse and that was a disaster to clean. His dad moved him when I went to help my daughter.
I would also take him grocery shopping and he was using what he learned in hospital and group home to budget his money. Those skills are completely gone now. Now I am teaching him why he needs to wash his hands.
I trust the psychiatrist with knowing what to do with his meds. I’m not a doctor. My son has also made it clear he does not want me involved in his medications…
Perhaps they believe that this is better than living in a hospital or group home? Perhaps they believe that he has a right to choose even if it’s a bad choice? Perhaps they don’t have time? Perhaps they believe that keeping a relationship with him is about hoping over time he will agree?
When his dad died 2 yrs ago he did not want me involved in his life and I will not risk that happening again by getting involved with the team except when needed or if my son wants me too. I just want to make sure it does not stay like this or worse when I die.
Here is a link to a site in Canada but from my understanding all ACT teams in North America share the same philosophy and approach.
https://www.act-bc.com/
It just breaks my heart…I’m at a loss really.
Thank you for your thoughts, Serenity!