Family and Caregiver Schizophrenia Discussion Forum

Accepting help from others

My son has been accepting help with cleaning his apt and then not accepting it. Recently he has become ill with a physical disease that is just being diagnosed. When listening to him talk about what would be something that would make him happy he talked about really wanting to have access to the internet as the one thing he would really like to have so he can download books and movies and music.

My service provider recently had a promotion for cable tv and internet with unlimited 1.5 GB / sec download. (This is so exciting for him)I asked him if he would be willing to let the person who was helping him clean his apt once a week come back and do this again if I paid for this service for him. He agreed excitedly! So yesterday I went and cleaned his place and he helped. It’s looking good except needs some fixing with his toilet which my brother suggested we just buy him a new toilet and my brother would install it. My brother works in restoration/renovation.

He talked about why he does not really notice how unclean his place is and that the simplest solution is to put items in the garbage instead of on the floor etc. He said he thinks it’s because he spends so much time in his head in his own world that he just does not notice. Yes! The team is onboard with his other physical illness now after I helped him get to his GP after he was telling me about these symptoms he was having.

Anyway, sometimes it takes time to work things out and it is a work in progress for all of us. I think for him he wants so badly to be able to take care of himself independently without having to rely on his mom or others. It’s hard to have someone in your personal space and making decisions about you or for you. I had other thoughts around this but can’t remember now. We talked about how hard it is to accept help but in the end it does make life easier and more enjoyable. It’s good to accept help from the ACT team and others. I hope he continues to say yes to help from the team and start to enjoy his life more.

10 Likes

This makes a lot of sense why my son does not see the huge mess he has in his room . Its wonderful your son admits that to you .

3 Likes

I totally sympathize with that “spending too much time in your head to realize how messy your place is” feeling. My room is pretty cluttered as a result. My schizophrenia is somewhat stable but I still have difficulty being present and realizing how messed up my situation is.

4 Likes

May i ask what’s it like ? what are the thoughts like ? are you distracted by voices ? racing thoughts ? im just trying to understand if you don’t mind .

All good stuff, I wish I could get my brother on this road. He’s become a bit of a hoarder. I’ve mentioned it before, but a big turning point for me in my independent living was getting a cleaning person to visit every two weeks. My first one originally cleaned my workplace, so I got to know her first. There’s a level of trust required to invite someone into your space and a sense of embarrassment and admission of inadequacy and failure that goes along with it.

I’d recommend anyone wanting to work with someone to accept this sort of help to watch some episodes of the ‘Hoarders’ program and take note of how they interact with the people they help. I’m not saying all people who hoard have a SMI or vice versa, but there’s a similar mentality of how people with SZ treat their spaces and pitfalls they get into when things don’t go well for them.

I’m not sure if this is typical of all people with SZ, but my natural thinking style is what I’ll call focused distraction. My thinking can be very focused but I’m easily distracted, so I’m often working on multiple tasks at the same time. In my case there’s a bit of an ‘executive function’ that keeps me on track on my overall goals, but when I’m stressed or I get too much going on, it gets harder and harder to keep focus on what I’m doing. And I start forgetting things. For example I’m a big coffee and soda drinker, so I sometimes lose track of the soda can or coffee cup I’m drinking from and my home or office can become littered with them. I was a bit better in a communal spaces at work, but once I got my own office I started backsliding. Periodically I have to have a big round-up. People who plan well learn how to clean up as they go along, but I find this difficult.

My understanding is most people with symptomatic SZ have issues with ‘executive function’ perhaps processed in the frontal area of the brain and may become blind to seeing disorder and have trouble finding steps to get out of it. So just as they might be less aware that anything is wrong with them mentally (internally), as in anasognosia, there’s a similar lack of perception of disorder in their environment (externally) as well.

What might distract me? Nowadays it’s usually other thoughts and ideas and these may come internally by internal associations, or from stimulus like alerts on my phone or sounds or music or TV or people talking in my environment. It’s not that much different from my symptomatic days, except misperceptions or voices or intrusive delusional thoughts are often less coherent and clear than your normal inner monologue, and they ‘speak’ more loudly and insistently, so you spend more time processing what they are on about, and have less time to deal with whatever task you have at hand.

6 Likes

Linda, there are times he is so involved with his voices and in his head that he is present in person but does not say much or respond much and just watches tv. This seems to also coincide with his med injection but I’m still not sure if it relates to anything happening to him or if it’s just cycles of symptoms.

Sometimes it’s hard to hear things he is telling me like he believes people should be able to live homeless and it’s their right to make that choice. Sigh…my response has been to say that if I ever get Alzheimer’s and end up living on the street…please don’t leave me there and put me somewhere warm and safe with the care I need. Or when we were cleaning he reminded me of the time he did not shower or have clean laundry for 2 yrs. yes I remember that all too well because when I had visited that summer I did his bags of laundry and actually let his t-shirt he was wearing at the time stand up on its own! I kid you not.

3 Likes

Naturallycured, my son said to me, “I can’t believe you actually like cleaning?” I know people who do like cleaning but I’m not one of them. I just like the clean room part of cleaning not the doing it. I tried to see cleaning as a way to get exercise now. Ha ha.

3 Likes

Yes,that was similar to my thought I could not remember.

I dont know much about OCD but his place definitely looked like someone who has this disorder. I’m not sure if that is part of what his problem is but I have talked with a number of family members with the same level of schizophrenia as my son and they required full time housekeeping or living in a care home. When he started coming to visit at my home as we sat watching tv he would take wrappers etc and just throw them or drop them on the floor. I would say “what?” Or something to that effect and he would pick it up and put it on the table. Before he leaves my house he puts all his dishes in the dishwasher ( the new love of my life haha) and garbage in the bin.

He now only uses disposable dishes and most cutlery. We need to find a good disposable fork cause those plastic ones break too easily. He now has a garbage bin beside his couch and has talked about how it is easier to put things in a bag versus pick them up after weeks on the floors to put in garbage bags.

Thanks for your thoughts. Always good to hear of your experiences and your perspective!

2 Likes

I like the fancy clear ones, they are stronger than the white ones. I buy boxes of them for lunch and put them in my desk drawer. At times I think people with SZ crave ritual and repetition which may be the overlap with OCD you observe. There are times I feel I could eat the same thing every day, like Andy Warhol and his Campbell’s soup and Coca-Cola diet. I find this sort of thing comforting.

People tend to associate OCD with cleanliness, but forget that the prototypical representative for OCD, germaphobia and reclusion was Howard Hughes. A huge paradox that he was germaphobic, rarely washed and lived in filthy conditions.

1 Like

This is very good insight! I will try to have a conversation with my son along these lines, although part of his problem, I think, is that he is living “down” to the environment of others around him in a group home who are in various stages of their own journeys. And part is a carryover from college when a group of guys in an apartment just really had no interest in house keeping and very casual (and sometimes the unkempt look) was considered acceptable.

I also have found that having someone to work along side our son with the cleaning (I am the sane way!) is helpful. Thank you for sharing!

1 Like

@Linda: The feeling is like cleaning up just “doesn’t feel right” until the thoughts in my head get sorted and I feel “light” (weight-wise) enough to do it. It’s like there’s a pressure in my head keeping me stuck to my computer seat.

I used to have voices that made the sensation even worse, they would be constantly naysaying me and I’d be locked in this perpetual demotivating argument with them that just saps all my energy.

@anon64643646: I envy people who are light enough in spirit to get out of their head and just clean things up.

2 Likes

@hope4us, yeah living to the level of what you are living in or the age of the skills you had learned when you became sick. My son has a hard time moving physically even…so we took rests while he filled the garbage bags and I held them. PS…thanks for all of your great posts.

@Maggotbrane, that was a great movie! Did he start off with OCD then become psychotic? I got some of the clear plastic forks.

1 Like

@anon64643646 for once I’ve never seen the movie, but I read magazine articles and a book or two that mentioned his life a long time ago. I wasn’t aware he was ever considered psychotic. To my knowledge he didn’t hallucinate. He did have some odd notions and behaviors that might be considered delusional, but my understanding is his downward spiral started with obsessive hand washing and handling everything with tissues.

1 Like

The what’s why’s how’s of personal and environmental hygiene…yikes.
My MI partner of close to six years… initially I think most people assumed the term ‘hoarder’ was a singular issue phrase in and off itself. It our case it seems to be a mix of a variety of things. Most notably impulse control behaviors. I do mean plural. Also, very likely a trauma or loss that resulted in tending to hold or keep things that were literally (not a matter of perception, as he’d like to suggest) rotting. Absolutely abhorred by flies yet let chicken carcasses rot in the sink and claimed not to smell them… He said these things could be used again. These things might have had sentimental value to somebody (not him though he says…) They’d be used or worn again… Maybe. Nope. Never. One strap of shoe leather quite literally with a strip of cracked crumbling rubber underneath wrapped up and tied around with three threads of what once was three old shoe laces… I could understand this to a degree. I don’t like to throw away anything that I could recycle and make useful or into something else… but we’re talking R O T. No use. And literally hazardous. Breathable rot. That permeated every single thing in the dwelling that ever walked in or out. Rot. This wasn’t hoarding as in collecting and filing away useless shut. This was,(and still remains to a degree but far more refined these days) to be mostly a lacking in organizational skills. No discerning… just, no discerning. What most people use a trash can for… well there’s nothing except the place you’re standing or a three inch space of clear surface somewhere right? …I did eventually start putting trash bags/cans out all over the place just to see if it worked… it did! To a degree… I thing it was the seeds that just needed planting…(What are the different acknowledged subsets of SZ again? Disorganized thinking… word salad… ask a simple question get something seemingly non-associated with the question or even the topic.?)…Showering was non existent. Some notion about soap and chemicals…toothpaste is bad gives you cancer. Then just don’t brush instead. …ok. Poop and wipe in the yard. Don’t bury anything. I get it. Septic messed up? Nope. Septic works fine. Refusing to wear anything but short sleeve tee shirt in the the sub temp weather outside for long term? Wearing two thick wool sweaters reeking of cat urine when it’s 70 degrees out? Said it was ‘comfortable’.
Who am I to judge somebody’s personal body temperature/comfort/pain level? Well, I can’t. So what you tell me is what I’ve to work with, right? I mentioned compulsive behaviors? Walking around with multiple ejaculate in the same shirt for for a week and wearing it…list goes on… Happy to report these days the showers are daily, oral hygiene is proper (except the not making to the dentist. It’s ok. Lots of folks are scared of that…) There’s an awareness of the rancid laundry (it’s a miracle!!!) Still needs occasional reminders that trash is created in our world to go in the trash can, but does fine enough most part these days. All-the-while still allowing somebody you love to their own rights and privacy…
Damn hard.

3 Likes

Omg, @Wisdom… you should write graphic novels. lol. My son does have poor impulse control in multiple areas. Wonder if it’s a mix of things and is hoarding related to trauma or is it part a form of OCD that can occur without trauma.

[quote=“Wisdom, post:14, topic:8807”]
This was,(and still remains to a degree but far more refined these days) to be mostly a lacking in organizational skills. No discerning… just, no discerning. What most people use a trash can for… well there’s nothing except the place you’re standing or a three inch space of clear surface somewhere right? [/quote]
Is this a form of hoarding? This is what I’m seeing. There does not seem to be an issue with the stuff being removed or attachment to it. Although he would only allow the kitchen and tv area to be cleaned but I said and the bathroom (!) However when I asked if he needed new pillows he said no and when I saw his bedroom the mattress has no sheets and is black from dirt. The pillows the same. The reason I thought about the pillows is because he has hyper salivation from the Clozapine so these pillows need to be tossed. But when I approached this he was adamant that I leave him alone about it. He explained they were fine and he finds his room comfy like that ( omg omg)

The bathroom had a plugged sink from the odd time he shaves his moustache. Liquid plumber took care of that. The toilet was plugged and a snake took care of that and it seems ok. The seat was broken so that you could not sit on it. It has not been cleaned in years so CLR liquid over 2 days (And bleached the room) and a new seat seems to have taken care of it. My concern though is that his meds cause constipation and when he goes it plugs the toilet so maybe a toilet with larger drainage? I know of a person who had a condition called mega colon and there was a special toilet for him.

1 Like

Still chuckling over your “OMG OMG” and not because it’s truly funny but because I completely utterly and thoroughly get it! I remember that bedroom, that bed. Vividly. No sheets, grey smeared mattress, yellow stained naked pillow, smears of multiple unidentifiables on the walls in a variety of colors and textures (same with the bathroom), dirty clothes and garbage piled on the mattress almost like he’d been nesting in the refuse, same on the floor (except you couldn’t see the floor. It was wall to wall) two feet deep and trailing out the bedroom door and all the way down the hall… I remember doing a high-step tip-toe long-stride wading through it trying to get down the hall to the bedroom saying out loud “are we SURE there’s no bodies under here??”
Ultimately it was tackled in much the same way as you. CLR, bleach, liquid plumber. All familiar soldiers to me. And elbow grease. Once he was able to experience a cleaner environment and a little upkeep and all the trash was removed (twenty four bags that had sat piled half way up the wall with the rest just thrown loose on top and completely covering the floors and all surfaces) it was easier for him to feel less overwhelmed, then the process of organizing and discarding useless things began. It was a painstakingly slow process, as I still wanted him to feel everything was still HIS and thus final say was always his and this meant for him I think that he was still in control. Eventually I moved in and was determined that all the trash in the yard immediately get removed and constructed a small garden and was able to create a really nice space we both could enjoy with a patio and tons of varieties of plants that he immediately got involved with and I’d see him out early in the morning and every day in the evening faithfully watering all the beds and caringly and tenderly poking through looking for precious new vegetables or blossoms…
These were the days waning away from near-constant crisis. There were family meetings discussing maybe trying to get him to voluntarily go to a care facility, allthewhile I kept the normalcy of a comfortable home and slowly over the years he’s been able to become a mostly functional thriving individual. There are still ‘episodes’, mostly isolated delusions and odd nonsensical behaviors and erratic thought processes which often can be violent or lead to dangerous irrational behaviors and choices but like I said isolated for the most part.
I’m rambling now so I’ll wrap up with, as far we have been able to experience, the personal and environmental hygiene habits greatly improved over time as his symptoms became less frequent and with a bit of a hand have mostly been managed. Organizational skills, both outwardly and in thinking still seem to be a struggle but far less severe. Best suggestions I have are continue to be as supportive and loving as you can without burning yourself out and remember we can only offer the help and whatever or how much they are willing to accept is ultimately up to them. (OMG OMG!!) Thank you for sharing everybody and as always for being here! Stay good to yourselves!

1 Like

@Wisdom I agree with @anon64643646 on the colorfulness of your stream-of-consciousness writing.

My sister and I learned a small slice of the horrors you speak of at the tender ages of 15 and 17 when we were tasked to clean up after a manic episode of our brother’s. It was an amazing spectacle of manifested disordered thinking brought to art form. One thing that bipolar disorder has on SZ is the prolific and rapid nature of chaos generation. We felt part forensic psychologists, part cultural anthropologists trying to make sense of what we saw. Piles of glass in the kitchen from attempt to construct a bong out glass bottles by chipping glass with a nail or other sharp instrument. A pony keg in the refrigerator in an attempt to ‘save’ money on beer, tufts of hair and various knives strewn throughout where he had decided his dog— a Siberian Husky— had gotten too hot and needed a haircut. Add to this a bit of flooding due to a window being left open in a basement apartment and on and on. And although this predates ‘The Big Lebowski’, the cardinal sin of a rug stolen from my bedroom placed prominently in the center of the living room covered in various flotsam and jetsam, bong water, beer, hair, glass— what have you. And to top it all off a miserable ride home in pouring rain with his poor dog vomiting in the back of the station wagon, because, of course, he got car-sick.

Presently all his possessions all have back-stories and rarity or potential and he has trouble parting with them except as ‘gifts’. He had a phase where he collected trash in his kitchen in twisted thoughts of recycling, but my sister broke him of that. My sister somehow has the patience of Job and will sit with him cleaning in front of him until he tires or needs to smoke a cigarette out of anxiety and she’ll continue to clean with him there or not. Once things reach a level of acceptable chaos, she leaves him, but vows to return if he backslides again. Somehow this works to some degree. A bit like an inoculation or shock treatment. I don’t know how she does it. By the way, I suppose it goes without saying, he still has my rug.

1 Like

@wisdom. I just remembered my son did have a big trauma. When I was away helping my daughter with her postpartum depression and the baby by first moving her to a woman’s shelter because her partner was abusive, my son was doing a lot of caregiving for his dad who had lung cancer then brain cancer. That was difficult for him to go through because his dad was his best friend. Anyway, I’m so glad that things got better for you guys. love the garden idea.

My focus is helping my son deal with his new doctors at this time and helping him to experience some comfort and joy in his life with recognizing that it’s ok to help with only what he accepts and let it go otherwise.

I do need to be vigilant about my self care and not burning out. I was lucky to have a great GP many years ago who sent me to a mindfulness based stress reduction program at a local hospital. It had become my best tool in self care and I highly recommend it to others on this site. Also the book by Jon kabatt -zinn titled “ Full Catastrophe Living” which the program was based on. Immersing myself in painting my house and other creative endeavours are also good for me and also to remember the continuum of boundaries I learned from another family education course: imagine a line where you stand in the middle as the best position for caregiving. When we start to go to the end where we do nothing and avoid our loved ones then bring yourself back to the middle. When we go to the other end where we do everything for our loved ones neglecting their or our own needs then again bring ourselves back to balanced middle. Thanks for sharing!

1 Like

Sorry but this made me laugh. Sometimes we just have to laugh at the level of chaos that is created. As a family we have tried to rely on each other’s strengths and allow them to be used on a rotating basis.

I think men are better able to compartmentalize emotions compared to women so I try hard to be able to not think about the problems 24/7. I’m not meaning to be sexist but it is what I have observed. Even my ex husband was better able to handle sitting in a court room than I was.

Hope you and your family find some peace amid the chaos. Thanks for sharing!

1 Like

Would you mind if I ask if your son takes medicines or not?

I took a video of my sister’s room to show her doctors as she spent years unmedicated = years with unclean room so I took the video for me so I try my best not to let my sister go again without medicines -if I could… I really don’t know…

1 Like