Family and Caregiver Schizophrenia Discussion Forum

Introducing myself


#1

Hello everyone,

I am the mother of an 18 year old daughter who is diagnosed with schizoaffective disorder. She is currently doing very well after a very difficult time. I am very proud of her and the work she has done to get better. Mostly is she is lovely young woman, but sometimes I get really, inwardly frustrated. I don’t show it - I stay calm and patient and deal with the frustrating behavior but sometimes it is so tiring.

Some of the big problems I have is with self care behaviors, motivation (or a lack of) and insight.

I took her shopping for clothes today. She did really well, because she has gained a lot of weight since she got sick and it effects her self esteem, but she does not seem to understand how to dress for her body as it is now. She seems to have no concept of what size she wears, trying to fit into things that clearly will not fit. I was getting her an outfit for my husband’s graduation for his Master’s degree, and this needed to be a conservative outfit. She had no concept-even though I had explained it to her before we left-of what was appropriate to wear. I just kept explaining as she tried things on why it was not appropriate for the event- it’s cute but it’s too short (i.e you bend over and you’ll moon the place), it just doesn’t fit quite right (i.e. you’re busting out of it), your chest is too big for that shirt (i.e. your breasts are spilling out) and she got frustrated. When she gets frustrated it is NOT a fun experience-she does not always deal great with frustration - although she’s getting better. What should have been a fun experience for her she was looking forward to ended up being a painful reminder of her weight gain, needed constant input from me, and made me mask my frustration that she just didn’t “get it.”

She also has trouble with bathing regularly, wearing clean clothes (she’ll wear the same thing for week if I don’t call her on it). Sometimes she washes her hair and seems to miss entire sections, so some gets clean and other parts are still dirty. What is the best way to address this without damaging an already very fragile self esteem?


#2

Welcome!

I have an autistic son. We had pictures in plastic in the bathroom when he was younger. They show every step of washing yourself. Maybe that could help her?


#3

Make a plan. Shower/bath every second day. Have you asked her why she avoids showers? Maybe you need to change the shower that the water coming out is more soft. Or bath instead. Shower can feel like it hurts the body and the noice! There are voices in the noice!


#4

thought i would say hi.
what ever her favorite clothes are ( that are appropriate ) perhaps buy them in multiples so she will feel comfortable.
not bathing often is a sz thing, and normal.
gentle encouragement is needed for being reminded to bathe as sz loose track of time easily, perhaps a wall calender will help to remind her that it is ’ get clean day '.
the best thing she has going for her is ’ you ', good on you for caring and being a super mum and loving your child, i have only admiration for you.
take care


#5

Thanks for the responses everyone.

She says she doesn’t take showers because she’s lazy. LOL, yes, yes she can be very lazy! She is aware of a serious lack of motivation and will be quite open about it-until a lovely hypomanic period of the mood disorder part of her illness and then she’s like a pinball in a pinball machine. She balks at any kind of assistive techniques like looking at lists, and charts, and calendars. I think it’s because she compares where she was before she got sick and where she is now and thinks she “shouldn’t have to use them” kind of a thing-but I don’t really know. When I explain lots of people use calendars and lists and I do every day and all of that sort of thing she’s agree and sometimes even enthusiastically-but she almost never looks at them.

I like the idea of getting multiples of clothes she likes that are appropriate, we are going shopping again next week and I will take that into account.

I guess it’s something I’ll continue to have to mircomanage for a while, I am just always trying to find ways of getting these things from being externally motivated (which she responds to pretty well) to internally motivated. Ah, well - sometimes things I’ve said a hundred times just finally seem to “click” so I’ll keep trying and wait for that day to come.

One thing about her is she has a great deal of denial and cageyness about her illness and symptoms. If there’s some delusional, paranoid, or those kinds of reasons why she won’t shower-she probably wouldn’t tell me. I usually chalk it up to this annoying lack of motivation she has.

I just don’t like her to feel like a diagnosis, but at the same time I want her to have insight into her illness so she can advocate for herself. It’s a hard balance to maintain-especially when talking about self care things that make her feel like a sick person.


#6

It took me over 2 years to " come back" after my major break. Abilify helps me a lot. I gained access to parts of my brain again.


#7

Yeah, I had to go back up and reread your initial post. How long has it been since the diagnosis and initial onset? My first thought is that she’s still a teenager and going through an extremely difficult time. Yes, you need to teach her to advocate for herself but you are her caregiver and her voice until she gets on her feet and figures things out. It will take time and patience.

Lazy and the lack of motivation associated with sza are two different things but it easy to call them the same thing.

Maybe you could bring a digital camera and take a photo of her in the too-small clothes she’s trying on and show her what she looks like. Sometimes seeing yourself in photos is an eye opener as to what you really look like. Then she might consider bigger clothes. Mirrors are deceiving.

Maybe have another adult, like her dr, speak to her about hygiene. She might listen then.


#8

@oneof21angels , Welcome to this site. I am sorry that your daughter is ill. She is very young. They lack motivation to do simple tasks and specially personal hygiene is a big issue. My son lived in a big city for 2 years, no shower OR shave and didn’t change cloths. When he came to live with us 30 months ago, I wrote down some rules to follow. He said someone was watching him when he took shower. He spent very short time in the shower. Then my husband stood outside the bathroom door for few weeks which helped him. He takes shower daily, shaves ones a week. Good luck, small steps will help her to do better. Sending you positive thoughts as well.


#9

oneof21angels

I have one suggestion that may fit in before you go shopping: the keepsake quilt. Clothing items that are kept for sentimental reasons make excellent quilts.

Quilts are often created for purposes of story-telling. Prior to going shopping, a discussion about creating such a keepsake quilt may remind your daughter how her own growth is cherished by the two of you and others in your family. Overtime, she may design the quilt and someone else can quilt the keepsake pieces together, if need be. An awesome fabric site online, where others can offer any print that may be made into fabric are wallpaper, hosts numerous ideas and prints that will aid in offering additional pieces to her held-onto clothing items.

Then while out shopping and pampering, the two of you will have a confident zeal knowing style and creativity is what it’s all about.

I also respect your caring attitude.


#10

Hi @oneof21angels. Welcome to the forum.

I’m wondering if only taking her to certain stores, ones that have a more conservative selection, may help. Sometimes with my son I found that limiting what the choices are could help. Pick out several outfits that are conservative enough and have her pick from those outfits. That way she is still part of the decision process.

I tried my best with hygiene to always comment when my son was showered and looking good. I would keep it light but still let him know by comments like: Wow. Do I need to take guards with us to keep the girls away? He appreciated the humor and the compliment. My son has always had a big ego so playing to it came in handy at times. Maybe offer to help wash her hair for her as a mother/daughter thing. My son liked to go out to movies etc so I would let him know ahead of time that he needed to shower, brush teeth and change cloths first or we didn’t go. It’s not that he didn’t want to just didn’t think to.


#11

Thanks everyone for the suggestions! It is so awesome just to have someplace to go and say, hey, my 18 years has trouble with hygiene and get such sensible, not shocked answers, like it’s a totally normal thing, which I know for her situation it is.

I know that recovery is a process, as long as I see steady progress, and not signs of acute symptoms returning I am very, very happy. I mean, my daughter can now follow a conversation, she can concentrate on things she enjoys, she has plans and goals and is no longer suicidal, trust me I am VERY appreciative of all of that! I know all in all, she is doing really well!

I first started noticing her symptoms when she had just turned 16. I got her treatment immediately (they really just seemed to BAM be there, even in retrospect when I look back it still seems that way mostly) and at first she was diagnosed with bipolar, but as the psychosis continued 6 months later she was diagnosed with schizoaffective, which I do believe is the correct diagnoses. However, for a year she was in an out of hospitals. This last year she has made steady progress and now she does many things really well and independently. I want to set her up for success, but I also don’t want to create dependency. I second guess myself all the time.

Skins, I agree that lazy and unmotivated are different, she characterizes it as lazy-I refer to it to her and myself as unmotivated. Her self esteem went down hill quite a bit after her diagnosis. Building it back up has been a major concern of mine.

My daughter spends FOREVER in the shower when she gets in there. I know she still has voices and probably delusions, but she does not like to talk to me about them. When her symptoms were worse she did more, almost like it was compulsive and she couldn’t help it because other times she’d be really cagey about them. When I ask her how are her voices she’ll say “Oh, they are still there.” And I’ll say, “are they bothering you lately?” And she’ll say “No, they are just conversations, they are turned way down.” And I’ll just say “Okay, well that’s good.” And that’s it. I never have pushed her to talk about them if she doesn’t want to, but I like to check in on it. So, I don’t know if she feels like there’s some delusion associated with the shower…may be I’ll see if I can open up a dialogue about that. Never even thought about it before.

The quilt is a very darling idea, I also never considered she might have a sentimental attachment to certain clothes.

Barbie, I also try and make a real big deal out of anything of the things I like to see in her, so she’ll continue doing it. When we were shopping at first she would shoot down anything at all I picked out, so finally I thought “I’ll let her try on specific things that I know are not appropriate so she can see it on, and I can explain why it doesn’t work and then may be she can think through it better.” I don’t know if it worked or not because it still took about 7 clothing items and a lot of frustration before we found the outfit-but we did eventually find it. I do like the idea of going into more conservative stores. I have tried to tell her “You are in a new phase of your life, you need more conservative clothes, you’ll be going to job interviews and getting a job, you’re not a teenager anymore, you’re an adult-you need an adult wardrobe” So it seems like something positive instead of “Child, why can’t you see you’re a hot mess!” It just gets tiring to craft all these conversations with her all the time, but I guess it’s one of those things I need to be patient about.

Thanks everyone!!!


#12

I haven’t put a lot of thought into this advice but it seems to me that one of the best ways to get someone to do something is to give rewards. Set up some kind of reward system so that if your daughter displays the right behavior or takes the desired action she gets her favorite meal or gets to buy a tiny something online or go somewhere she enjoys. I actually saw someone post something like this a few years ago. Someone else had the opinion that it is demeaning because that is what hospitals do. And the hospital I was in 30 years ago did have a reward system set up in which if you did certain tasks (make your bed, shower, attended classes, etc) they handed out privileges like being able to visit parents for a whole weekend, going on outings, etc. I did not find it demeaning, I found out it was motivating. Instead of laying in bed all day or pacing I started attending math classes, playing volleyball out in the back lawn area, and shooting pool. It got me up and out WITH OTHER PEOPLE. Capital letters because being around other people is very important for anyone with schizophrenia.
Anyway, just some thoughts.


#13

Hi Nick,

I actually think it is fabulous advice, and I couldn’t agree with you more. I do use a reward system in several ways, I was a professional dog trainer and a teacher, so I am a big believer in positive reinforcement! Positive reinforcement is built into our everyday lives anyway-we just don’t recognize it-so why not harness it? I thought at first she might find it demeaning-but when I explained it and how it worked to create motivation, which she knows she has trouble with and doesn’t know how to deal with, she was on board and it has worked really well, generally.

One of the problems with positive reinforcement in general, is that it can create a dependence on external rewards instead of internal drives, which is what I’m currently finding. If I take away the reward the positive behavior stops. Since our goals is getting her independent, sooner or later doing things to take care of herself have to come from inside. I keep hoping that the behaviors will become ingrained over time if I keep doing what I’m doing to help, but not so far. sigh She also has a lot of trouble creating a “motivational program” for herself-if you know what I mean. I say things to myself like “when I’m done cleaning my bedroom I will watch a movie.” So the movie because positive reinforcement for my cleaning. She does not seem to have the ability to do that currently. She is not good at “thinking about her thinking” if you know what I mean…her planning and strategizing abilities have improved from initial onset but seem to mainly plateaued right now for some reason.

I am so glad you’re coping with your sz so well, and here you are helping people like me, that is so awesome!


#14

You need to be gentle with ehr when you tell her something. I was officially diagnosed with Psychotic depression three years ago, but I have been psychotic since I was a little kid. Whenever I don’t bathe or shower, my father shouts, “Go shower, you stink!” or something like that. He doesn’t understand my condition. But you, ma’am, are trying your best, and that is all that matters. What you need to do, from the experience of someone who is psychotic, is be kind but firm. If you need to, ask her if you can clean her and whether she wants or needs help. If you need to, take a bretaher, tell her you are going to go work on your garden or take a walk or something, then when you are clam, come back to your daughter and try again, try to stay calm and draw on your love for your daughter. Ma’am, you are doing better than my paretns when they found I had a thought disorder. No one in my immediate family has psychosis. My father’s cousin has Schizophrenia, but none of his cousins have the same father. But Just try and be as understanding and loving as possible. That is what your dauhgter needs you most for at the moment.


#15

Thank you for your advise. I do get frustrated sometimes, but I never yet have gotten so frustrated I’ve said anything in a less than gentle way, or seemed impatient (that I know of). For me, that is easier than it is for some-it just is. I am patient by nature, I am careful in what I say by nature regardless of my daughter and her illness. And I am not in denial about her illness nor will I ever stereotype or stigmatize her for it-I don’t have those kinds of issues-for the most part-with mental illness. Being firm but gentle is more difficult than it seems-I try to find creative ways of doing things so I don’t make her feel like crud, and hygiene issues are tough in that way. It’s harder to find ways of getting someone to do this without being overt about it I guess. I’m sorry your father doesn’t understand your illness. I hope one day he comes to terms with it, I hope there are things he does that are helpful and that you have lots of other support.


#16

Of course I have support, ma’am. I have all of you on this forum. I know it is difficult. I have trouble being firm but gentle in the same way. And I am happy you love your daughter. If you ever need anything, don’t hesitate to message me.


#17

Thank you, it is so nice to have this place. So many people either minimize the issues around this diagnoses, try to pretend like what I’m talking about is some taboo subject and change the subject on me, or do the opposite of those things and be all doom and gloom and freaked out about it. It is what it is, and she is an individual and it just needs to be dealt with. It’s nice to be around others who are real about it. It makes me feel not alone.


#18

I agree that this can become a crutch on it’s own. I’m afraid I ended up in a negative situation by trying to reward my son and show him what it was like to have things. When I tried to cut back on the constant treats and extra spending like Tim Hortons, restaurants, games etc it didn’t go over to well but that is on me for letting it get out of control in the first place.

I didn’t get a chance to put this in place due to other factors but I did look into a more sensible reward system. I printed reward coupons. I had minimal rules to be followed like cleaning up after himself and sleeping in his own bed, stuff like that. If he followed them for a week then there would be a reward. If he got 2 weeks of that reward then a bigger reward. Then one for a month.


#19

We used to have rewards to my son if he dressed him self, went to school and showered. He has autism. We tried different length to be rewarded and found that he can not see further than 5 days. If we troed to make rewards every 8th day it was too abstract to him and nothing worked. This was when he was 7-10 years old. He is 13 now and takes showers willingly. Also brushes his teeth without fight. He is in special school and only comes home every second weekend. That made a huge change in him.
What I’m trying to say is that you need a lot of knowledge about her disorder. You need time for YOURSELF to regain energy and to be a good mother as you are now, but your energy won’t last forever if you don’t take care of yourself. Ask other ppl if they can help you out with stuff. Like shopping food or something that might take a lot of time and energy from you.
My son has personel working there days and nights. They are always alert and rested when they are at work. No normal family can do that and hold a job at the same time. I think taking care of a sz or sza person is a lot like taking care of a teenage autistic boy.


#20

Comatose - that is an interesting idea - my son often seems to have trouble with voices after taking a shower - I had begun to think the shower was somehow triggering, but couldn’t figure out why.