Any suggestions on how to go on caregiving

Hi, I have been taking care of my 28 year old schizophrenic son for at least the past decade or so. I am the only person who interacts with him, the rest the family wants nothing to do with him. He lives in a condo I own a few blocks from me and depends on me for everything from cleaning his place to buying all his supplies. He does not drive and he has zero friends. His dad is out of the picture. I don t know how we got to this point of me helping him and being his only “friend”. I am a senior and have a husband who never wants to interact with my son. I am exausted and drained from dealing with all my son’s awful behavior. I doubt he takes his meds all the time and he is constantly begging me for t take out junk food and alcohol. My son is delusional and functions at a very low level. He never leaves his place unless I take him out for supplies. He is oneself overweight, will never take any of my suggestions for him to get any kind of help. He does have a psychiatrist that he had a phone visit with every few months who prescribes him some meds, I doubt he is taking them daily. Anyways I could go on and on, he constantly is calling me and I used to always help him, I thought he would get somewhat better and be more independent, but he is only getting more dependent and it is draining and suffocating me. I can not even stand to be around him and his bazaar behavior. I get terrible anxiety from worrying about him and from his many calls all day begging for food, tobacco, anything. I don t answer all the calls and I am heartbroken he is so isolated and unhappy, but nothing I do has helped him, and it is draining me and causing me to have constant panic. And I have been to Nami family to family and go to their support groups and another weekly support group, the problem is there is never any good news or improvement concerning my son. He never is interested or tries to help himself, but constantly complains about how awful his life is! I am patient and try to be nice to him, but I just want to scream at him to shape up, but I have done that and it is useless. Wel, I rambled on enough, does this sound familiar to anyone?


Typo, he is obesely overweight, he has gained 150 lbs in the last 3 years, and of course, showers twice a month and never brushes his teeth, could go on and on.


My heart goes out to you and to your son. From the sound of things, you are taking care of him and no one is taking care of you. Probably the most frustrating thing I have learned as a caregiver is that taking care of me is another job for me.

The support groups can be a source of local information and support, they can also be a constant swirl of nothing changing.

Would you consider working with a therapist to make your life better?

Some of the caregivers lead fulfilled lives that are still mainly focused on their family members. This isn’t the best situation for all of us, for some of them it works well. Do you think it is working for you?

In NAMI’s Family to Family class they teach that our priority should be maintaining our own lives. Our lives can slip away so easily when we focus totally on someone else’s life.


Hi Hope, Thanks for your kind response and for always being there on this forum. I am still working on living a fulfilled life and caring for him. His illness never improves, just goes from one awful thing to another. I am going keep hope pray that things will get better and he will be willing to try a new med combo. Right now it seems like we are just keeping afloat, but barely. Lol


No worries. irene, you have been gone for so long, we always hope that our members who we haven’t seen in a while are doing well.

I do understand the endless feeling and the barely keeping afloat. I know my family feels that way right now. We don’t get to do anything normal/normal with our family members. My son having cancer is trickier since we still can’t have his dad involved. Those delusions persist even in these last months of his life. This current time of our lives would be so much easier if we could have his dad directly involved.

We do feel fortunate that he is allowing me to help him. At this point I have begun to wonder if we will be using Amador’s LEAP right up to the end. They tell us families are exhausted by cancer battles - the illness, the treatments, it all takes over your entire life. In the end, you lose.

Cancer is another arena where we “get” to be different. The scz is there making every part of the cancer journey more difficult.

The title of your topic really appealed to me, some days I just don’t know how we do go on caregiving.


I am so sorry to hear that your son is battling cancer. It does seem like some people get a lot of horribleness and suffering on this life. This is so far from what we envisioned our son’s futures would be. It is a heartbreaking situation and comforting for all of you that you are able to be involved in his care. My heart is with you and your son and family and I hope your day is going okay. Is your son in hospice now? I couldn’t imagine how scary this all is along with the scariness of the delusions.

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Thank you so much. He is still willing to try another research trial, hospice won’t start until he decides to not do any more research drugs. At this point, since he has already done a good research trial, the only trials available are the riskier early stage trials.

He has done well persisting with the treatments. The delusions and paranoia are all still there, the oncologist and his team have worked well with his idiosyncrasies. What they know about him can only be from what they have figured out on their own. The doctors and nurses aren’t allowed to talk to me except when he has me specifically call them - usually when a prescription has been delayed.

He did develop panic attacks that turned into a panic disorder - not unusual for late stage cancer patients. He is one of many cancer patients on Valium and/or Xanax - yes he was actually on both at one time. Still no psych meds, sigh.

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Even when they’re doing well there’s this underlying stress that is exhausting. My daughter demands so much attention. She’s totally compliant with treatment and really very sweet. She wants to live on her own. For now, she lives with us, and i am with her the majority of the time. Its draining. Ive managed to rekindle my own life, and that has helped tremendously. I think my shift to other interests, and setting limits around my time, actually helped her.


I am so sorry about the difficult situation you are experiencing with your son - very challenging and so isolating.

I am the sole caregiver for my older brother who has paranoid schizophrenia and severe OCD. I have no other family. Some days I feel like I am drowning from the pressure of it all.

My brother lives with me and other than walk to the corner store he cannot go anywhere himself. He has day/night sleep reversal. He watches reality tv shows all night and then stays in bed until 6:30pm. I am trying to get him to stick to a chore list to keep himself and his area in the basement clean. So far he has managed to do his own laundry but soiled his bathroom to the extent that I had a $200 bill for professional cleaners. There is never a totally normal day in the house where things run smoothly and that is what I find exhausting.

I saw a psychologist and they told me to take some time for myself away from the situation. I go to a coffee shop and listen to the music and distract myself. It isn’t much but it is calming for the moment. My brother’s medication has been switched to Invega Sustenna and I hope that he shows some improvement. He is medication compliant which is a relief.

I wish I had more helpful advice. I just want to say that you are not alone on this forum.


It is such a difficult situation and seems at the tim like there is no end in sight. There never is a normal day, it is sad that no one else in the family will help out, if my son’ s siblings called him once in a while that would make a small difference. Your bathroom situation sounds horrible, but not surprising. I hope the new meds work better for your brother and you are very kind to care for him. We all have to get thru this and hopefully things will get better someday soon. My son refuses to try any new meds and most likely isn’t taking his AP Abilify everyday. My heart goes out to all of us who have had this unwanted caregiving job thrust on us,We have to keep sense of humor, if possible, lol and know we are not alone. It is good you are going to coffee shop, self care is so important.


Hi, I hope your son and you found some peaceful times today. This caregiving Is so draining and adding cancer to the SZ caregiving is so very hard. I am trying to see a silver lining today in the fact that at least we are in a position to care for our loved ones. I am also trying to think about having a fulfilled life along with being a sole caregiver for my loved one. We all have to remember self care, how many times I think of how nice it would be for me to have a caregiver a few times a week! Lol

Hi irene,

He did have some peaceful, fun moments yesterday. He has a video game he is trying to complete, he worked on that and he watched some tv shows he likes. Cancer is such a long rollercoaster, in that way, a lot like scz.

I miss being at home, I miss my husband. We should be together dealing with this, thanks to the scz we are hundreds of miles apart. I also need to stop whining :laughing: as we all know, it could always be much worse.


I agree with @hope about getting a third-party (i.e. therapist) involved. Ideally, this would be behavior-oriented person who would help you and your son set attainable goals to improve his independence. Baby steps might be to clean one room of his condo each week and to accompany you while shopping to help put the items in the cart and carry them out to the car.

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Hi Hope, Good to hear you had some peaceful times yesterday and hopefully some restful times today. You have a lot to manage right now without your husband to help. A litttle whining is helpful, I call it venting, haha, and a good cry can help too. We are stronger than we knew we were, and we didn’t want to find that out thru these very sad stressful things. Maybe tomorrow will have many joyful moments for us all and our sick loved ones.:crossed_fingers::pray:


Hi, thanks for your helpful ideas. I am looking for a therapist that is covered under my insurance. My son is not willing to see a therapist. He refuses to do anything to help himself like support group, volunteering, or a therapist or even eating healthy or exercising. He isolates most of the time and is delusional today, must be off his meds. He complains how he hates his life, doesn’t get that he had to do a little effort to change it. Maybe some day that will click, but he is very emotionally immature, as he got sick so young that he never really developed any social skills or he has forgotten them all from being sick this past decade, hence, no friends or social life. Just hoping for med that works and he was willing to try it, or a miracle! Hope everyone has a peaceful evening. :sunflower:

What you’re dealing with is very hard. My partner has some people, his parents and i are mostly involved, they’re sometimes helpful other times have caused problems, but it’s hard to navigate. I do A LOT for him. It is exhausting. I hear you and wish you the best with your situation. Its so difficult. One thing that comes to mind that i got my partner involved in is the hearing voices network. They have online meetings tues night, and wed afternoon, which he attends and they are only for people who hear voices. He can talk with people who have shared similar experiences. (You reach out via an email for that to get weekly links emailed to him for the meeting.)They also have in person meetings in some peoples areas you can also search for those. There are none by us. It can give him some contact with others, and a place with others who understand the experience as well. Find a Group
Also nami has weekly multi night peer to peer meetings also can be via zoom. Just some ideas to get him more interaction besides only you.

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My partner also has severe ocd. Ive been reading about the overlap and some similarities recently, and that 25% of people with schizophrenia have obsessive symptoms, i think around 13% have diagnosis of OCD. The really interesting part was even people with less insight with schizophrenia but have ocd, benefit from ocd therapy techniques. It really complicates his life and ours, all of it. Glad your brother is medication compliant thats huge. Things get pretty disgusting in the home, i try to get him to help clean with me, other times i just do it when it gets really filthy and he’s letting it go. It’s constant work with not a lot of help, plus he’s just extra messy!

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I am my son’s caretaker. He is an only child, and his father passed away. I live with my domestic partner of 34 years. The relationship between my son and he has become strained over the past two years, due to my son’s irritable moods and odd behavior. My son lives in an independent living group home, and visits me Monday through Friday. My domestic partner asked that my son not come to our home on the weekends, and my son agreed. This has reduced tension between the three of us.

The positive about my son living in a group home is that he must interact with others, whether he wants to or not. If he lived with me, he would not leave the house, not see anyone besides me, because he has no friends, and would become more dependent on me.

I worry a lot, maybe too much about my son as too whether he might relapse again, and what would happen to him if I should die before him. He has no one else besides me. This causes me anxiety, and his moodiness and odd behavior cause me stress.

I finally decided to see a therapist and plan to continue with therapeutic sessions. I am not able to change the behavior of others, but I could change my behavior by learning to be more mindful and take care of myself.

I participated in the NAMI Family-to-Family course which was very informative and educational. It helped me to prepare for what I call my ‘journey’ with my son. However, besides the support from NAMI, I need to do something just for myself, i.e. individual therapy.

I wish you the best and take care of yourself.


**Thanks for your helpful response. I will check out the hearing voices group and give my son the link. I have given my son the link to NAMI peer meetings, unfortunately he never participates. I understand how hard it is to clean up after your partner, it is like they just lose all motivation and can t do anything. It is exausting and frustrating, but we just have to plug along and hope for good days. We must practice self care when we can.

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Hi, It is really good your son is in a group home. That seems to be the only way they interact. I would love my son in a group home, we don t have any around here that are permanent housing. Right now my son says feels so secure in his condo, and then other times says he hates it so much and I trap him there! So many mood swings. I really don t know how he would like living alone in that condo as he isolated himself in there and never even leaves to take a walk. He hasn t driven for many years, sadly. The condo is not a sustainable place for him, as it is too costly, it was intended he move in there temporarily till other housing was available, but it has been 4 years now and we are able to swing it, but it is not easy financially. Best wishes to you and your family, it is a day by day thing and always the worry is looming about what will happen next.