Family and Caregiver Schizophrenia Discussion Forum

Taking on parent with schizophrenia


#1

I’m 28 years old and my dad has schizophrenia. I have looked into all the options available to me for his care and as far as his living situation goes I can either leave him in a run down looking building in the middle of the ghetto, where I have to cross paths with prostitutes and drug dealers to go and see my dad. Or I can take the plunge and take on the responsibility of his wellbeing myself. I’ve heard the lectures from my family already that I may end up ruining my life by taking my dad in instead of leaving him where he is but I can’t help but argue with that logic.

Yes I’m young and I still have a long life ahead of me but right now the only thing I’m doing with my life is going to work, coming home and sitting on the couch. I don’t have a social life, not really and its in my nature to care for others. With that in mind, I cannot in good conscious leave the man that raised me to wither away in some place that is the equivalent to hell to him. He is depressed where he is and he will never get better unless something is done. So I’m doing it, I’m going to take care of him.

What I’m asking for on here is advice from others who are taking care of loved ones with schizophrenia. Are there other kids who have taken that step towards caring for their parents? Lets talk, help each other make it thru the tough times. I know I will have struggles going forward and I know I will need support from others who are dealing with similar problems. At this point I’m just wanting to let me voice be heard and to know I’m not alone.


#2

Piles of research show that sz pts tend to get “better” when they…

  1. Get a copy of this book and read it and have their families read it, as well.
    http://www.amazon.com/Surviving-Schizophrenia-6th-Edition-Family/dp/0062268856

  2. Get properly diagnosed by a board-certified psychopharmacologist who specializes in the psychotic disorders. One can find them at…
    https://psychiatrists.psychologytoday.com/rms/

  3. Work with that “psychiatrist” (or “p-doc”) to develop a medication formula that stabilizes their symptoms sufficiently so that they can tackle the psychotherapy that will disentangle their thinking.

  4. The best of the therapies for that currently include…
    DBT – http://behavioraltech.org/resources/whatisdbt.cfm
    MBSR – http://www.mindfullivingprograms.com/whatMBSR.php
    MBCT - http://www.ncbi.nlm.nih.gov/pubmed/22340145
    ACT – https://contextualscience.org/act
    10 StEP – http://pairadocks.blogspot.com/2015/04/the-10-steps-of-emotion-processing.html

  5. the even newer somatic psychotherapies like…
    MBBT – https://www.newharbinger.com/blog/introduction-mind-body-bridging-i-system
    SEPT – https://en.wikipedia.org/wiki/Somatic_Experiencing
    SMPT – https://en.wikipedia.org/wiki/Sensorimotor_psychotherapy

  6. or standard CBTs, like…
    REBT – https://en.wikipedia.org/wiki/Rational_emotive_behavior_therapy
    Schematherapy – https://en.wikipedia.org/wiki/Schema_Therapy
    Learned Optimism – https://en.wikipedia.org/wiki/Learned_optimism
    Standard CBT – http://www.beckinstitute.org/what-is-cognitive-behavioral-therapy/About-CBT/252/

  7. If you/she/he needs a professional intervention, tell me where you live, and I will get back to you with leads to those services.

Hopefully, @SzAdmin will pop in to share his stuff about the RAISE Program, as well. See https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=raise%20program%20schizophrenia.


#3

thank you for the information, I’ll certainly look more into all of it. As for an intervention, there isn’t a need. He was diagnosed a few years ago and he’s been living in the same nursing facility after his first psychotic episode. Now that he is more stable he is able to move to a better place but because of his age there aren’t many options. He is too young for most of the nicer places and the only Medicaid bed available are in really bad areas.


#4

I will suggest looking into the following so that you can gather the information you really need to make such a momentous decision about the course of your next 20 to 40 years.

http://coda.org/index.cfm/newcomers/patterns-and-characteristics-of-codependence/

I am NOT “declaring” you to be codependent. Just suggesting that you take the time to examine to topic sufficiently to make a truly informed decision.


#5

Hi bemerson, I think your heart is in the right place. My family member is not a parent, but I like living with my relative who has sz. After some difficult times when we could not live in the same place, things are going okay for now.

First, I would ask my family for examples of your father’s behaviors that concern them. These behaviors may reappear or continue. The most difficult behaviors are most likely related to stress and stress is, sadly, part of life. Do they have any concrete reasons for thinking he might “ruin your life”? Without being confrontational, find out.

Second, does your father need company or supervision 24/7? Will it be okay for you to take time away from work if there is an emergency? Is there something he might like to do while you’re at work? My relative sometimes needs a 24/7 person nearby, but mostly not. Since there is no way of knowing which days these will be, it feels chaotic and does not allow much scheduled activity.

In this same area: does he take care of himself in a basic way? Ask the people at the place where he lives what he does for himself on a consistent basis without being prompted. My relative does not function well in the realm of “Activities of Daily Living.” Find out what your father needs help with; maybe he is high functioning? If not, find out what you would need to do for him each day.

Third, what if you discover other interests and fulfilling ways to spend your time? Will you feel comfortable doing the things you like to do? Is it important to you for your options to remain somewhat open?

Fourth, if it doesn’t work out, is there a back-up plan?

Just some of the many considerations. I’m all for caring for one another and being close to family. I don’t know whether I am doing a good job or doing what is right by my family member; that is one ongoing difficulty.

There are tons of general guidelines about boundaries and also stuff about living with a person who has a serious mental illness on the internet…


#6

Yes, Yes, Yes, Yes. (Really great question.)


#7

http://www.helpguide.org/articles/schizophrenia/helping-a-person-with-schizophrenia.htm


#8

Bumping up this thread.

I am considering doing the same for my mother… as I can’t bear to watch her live in these strange places. I keep being told that it would be a bad idea by the professionals.

But I feel so guilty leaving her in the hands of strangers.


#9

I can’t see why it is supposed to be a bad idea if your parent is treatment compliant. I understand that for young people with sz if they live with their parents, it allows them to withdraw and fail to develop self-care skills, find employment, etc, and they may become very withdrawn. But presumably your parents have done all that in the past (or they wouldn’t be parents at all).

So I say, yes, go for it. The only two suggestions I make are 1) ask them to promise to stay on their meds. If they stop, you leave. 2) Get some additional help - a weekly cleaner or whatever is needed, so your whole life isn’t swallowed by caring for them.

Beyond that, why not? My son has sz, and when he’s on meds (he is now on depot shots), he’s a really nice guy to live with. Also, throughout most of the less developed world people with SMI live with their families, and throughout most of the world rates if recovery are better than in the West.

Living with you will also mean that they see the rest of the family more often. More contact with his aunt and cousins has helped my son a lot with confidence and social skills.

The nay sayers are probably worried about your ‘freedom’ and any future romantic relationship you may want. I think you can probably handle that.


#10

That seems to be the biggest thing everyone brings up when I discuss taking my dad in and helping him. I realize I’m young and have a long life ahead of me but if I’m honest with myself, I’m not at all interested in the types of things other people my age are. I don’t truly enjoy going out and spending time at bars or going to a ton of concerts or even just going out in general. I mean, I do like to go out, don’t get me wrong, but I’m the kind of girl who is going to opt for staying in and working on my latest jig saw puzzle or reading a book verses going out to the club or a bar. All of my friends have families of their own so when we get together its a family oriented event. Even as a single woman I have more fun going to the zoo then most other places anyway.

As far as a romantic relationship or anything resembling that is another thing I’m not all that concerned with. I’m not the kind of girl that is looking to find the man of her dreams get married and have kids, I never have. Should something happen I meet someone that’s great but they will have to understand that my dad is someone I’m going to be taking care of and I would hope that they will love me more for that.


#11

I think its commendable that you wish to take care of your mother. I am curious what makes these professionals say it is a bad idea though? Is she very dependent on the care givers now? Can she handle daily functions on her own? Bathing herself? Feeding herself? Things like that? Is the possibility of becoming a more independent person an option?

I know that my dad could probably live in an assisted living home where someone checks on him regularly but he otherwise has his own apartment where he would like a fairly normal life but for the time being he needs help. He needs meds that will help him be more his normal self instead of just sedating him for the majority of the day. When I go to see him in the facility he’s in now I can see on his face how much he hates it. The other patrons of ward he’s in are in varying degrees of deterioration of the mind. When I picked him up to go have Thanksgiving dinner at my aunt’s yesterday one of the other residents was shouting his name repeatedly and even after he responded they just continued to shout his name. It was like they weren’t truly seeing him and while that made me sad for them and whatever prison their mind is for them I was sad for my dad as well because this was a daily scene for him and he was terrified that he would turn into that one day himself.


#12

Ah, ok, but now I am going to tell you something that might hurt a bit.

It is ok, of course, that you don’t like going out to bars and stuff. But one thing that we carers have to learn and face is that the relatives of people with sz often share some of the characteristics, especially what are known as “negative” symptoms. These include things like lack of motivation and social withdrawal. So you, as a relative, need to consider whether you may aggravate such characteristics in yourself by taking on the care if your father. I am still not saying not to do it, though.

For me, the process of my son’s diagnosis and treatment has led to a lot of reflection and self-knowledge. And I did come to the conclusion that my social network was too small to sustain me well. I was relatively withdrawn, I think. Of course, in relatives these characteristics fall within the range of ‘normal’. They are not ‘pathological’, so we don’t have any diagnosis of anything. But they may not be helpful to us when under strain, as when taking care of someone with sz when they have a relapse, for example.

So over the last few years I have really focused on that side of myself. I structured my week so that I was going out and meeting people on a regular basis. Once a week I had a language lesson (low emotional involvement), once a week I meet a group if friends (religious activity), once a week I just meet a friend one-to-one. The last one is the one that gets cut mist often, but over time it is getting more frequent. I also call my sisters and my mum regularly.
I actually am married but my husband is away 80% of the time and he is not my son’s father.
In my case I am not living with my son most of the time. We live in different countries, and so I had already recognized my need for a ‘network’. I come and stay with him when he needs help, then leave again. This way he is developing his life skills in a way suitable for a young person with life ahead of him. And he is hopeful now of earning a living and getting married.
In your case, as I said, your parent’s needs are different. But you need to take a cold-blooded look at your own needs and develop strategies for building your own network.
I cannot tell you how much my life has improved since I did that.
Also, wonderfully, since my son has seen me do this, he is more able to take seriously my suggestions as to his own strategies. He goes to an evening class now. He visits my sister and his cousins. He goes to a religious meeting once a week.
So if one of you is well, it helps the other too.


#13

It was a couple hours after I’d written that post that I started thinking of how it sounded and that it wouldn’t be ideal for my dad’s well being to be like I had described. I certainly don’t intend to be home all the time and to not be going out and interacting with other people. I know that my tendency to sit at home most of the time is an issue and I have made poor excuses to letting it continue so I’ve been considering things I can do to get myself out of the house. Joining a gym and taking aerobics classes would be a good start me. While I can use the help to get into shape I know that he used to be very conscious about his physical health and he would be happy to get back into a regular routine like that. I’m also hoping that joining a local support group for SZ will maybe find use some friends but if not it will be nice to know we’re not alone in our area.


#14

Yes, I think that’s the way to go. And what I found is that the more active/healthy I keep one network (family, say), the easier it gets to enter and maintain another (work, interest group, friends, religious, etc). This is probably because the boost and confidence you get from one makes you more capable of dealing with others, and actually makes you more ‘attractive’ to others in some way. So over a period if two or three years I found it got easier to make new contacts and then new friends.
I think that’s what you need to remember. Then your caring role can augment your life, not limit it or decrease it.


#15

Caregiver burnout can happen. I wasn’t expecting it however it happened with me. My life became all about sz even though I’m not diagnosed.

Some of these links may help:

http://forum.schizophrenia.com/t/questions-to-ask-the-psychiatrist/2695

http://forum.schizophrenia.com/t/hope-for-families-treatment-before-tragedy/9301

http://forum.schizophrenia.com/t/8-ways-to-help-someone-live-well-with-schizophrenia/10496

http://forum.schizophrenia.com/t/grieving-mental-illness-the-mental-illness-education-project-inc/2748

http://forum.schizophrenia.com/t/the-caregiver-space/10783

http://forum.schizophrenia.com/t/creating-a-crisis-plan/3224