Family and Caregiver Schizophrenia Discussion Forum

Feeling Sad and Looking for Support


#1

I’m into year two as the mom of a 26 year old son who has been diagnosed with Schizophrenia.

He is living back at home, hasn’t worked in two years and spends his days either sleeping, watching sports on TV or on the computer. He is fully compliant with taking his meds and sees a psychiatrist and psychologist semi-regularly.

He maintains an active social life, but I’m quite certain that his visits to friends homes includes excess alcohol and drug use. I try to remain hopeful but find the whole situation so disheartening.

Just when I think I’m strong and can handle the daily stress I start slipping from hope to anger, sadness and frustration. On the one hand, I’m glad he’s living at home so he has a safe place - he calls it his haven. But what expectations should we hold him to?

He claims that he has poor sleep all the time, and will sometimes contribute to household chores, but often does not. What consequences should we impose?

He seems well enough to go out and socialize with his friends regularly, and on weekends he stays at their homes. When he returns he spends all day in bed for 2-3 days at a time, complaining of poor sleep. I know that poor sleep is a primary symptom of his illness, but I highly suspect this is also the result of self-medicating with drugs and alcohol when he’s with his friends to which he denies.

He gets income support from the government and although it’s minimal, he has few expenses to manage since he lives at home. Even with this, the bank has been calling our home phone incessantly, and apparently his bank account has been in overdraft for some time.

I haven’t quite figured out how we’re to deal with his debt yet again. He is a kind and gentle young man, and for that I’m very grateful for - he has never shown any violent tendencies and rarely shows anger.

I guess I’m just needing a virtual hug and some words of encouragement from someone who knows what it’s like and may have a ray of hope to share. :slight_smile:


#2

ON the positive side of things - he’s stable and has a pretty healthy social life - which is really fantastic.

Progress can be very slow - I know from experience, but you have to focus on the “small wins” - to keep your optimism and hope up, and at the same time keep engaging him and try to get him nudged or to nudge himself in positive results.

Is he getting any regular therapy?

You might also benefit from therapy - Sz is very hard on families and the stress and ongoing work at caregiving is very hard. Don’t be afraid to treat yourself well and take breaks when you can. Its hard a lot of the time - but then things will suddenly get better (and there are frequent setbacks too - its not a linear progress type of disorder).


#3

You get lots of virtual hugs from me. I’m still at the beginning of this journey, but I foresee a lot of the issues you mentioned in my future. I’m sure you will find lots of good advice here, as you already have some.


#4

Thinking about your post today as your son and my son sound similar. My son is also 26, diagnosed with schizophrenia , and living at home. He sleeps, and watches sports most days. He doesn’t do recreational drugs ( thankfully), but he doesn’t have friends due to his rants about people who have wronged him, his friends just didn’t know how to deal with them…
My husband and I realize that our son will be with us for the rest of our lives, while our hopes were that all our kids would lead healthy happy lives, that wasn’t going to happen with our son. So we just love him the best we can each day, enjoying the good days and dealing with the bad days as they come.
I think for myself being in a constant waiting mode for my son to have a meltdown, or something to trigger him is mentality exhausting. So I read the different post on these forums for support, because I find it hard to talk to friends or family about all we go through, especially going to the psych ward, or the symptoms he dealing with.
What also helps me is I try everyday to take him for a drive to do errands or go get a coffee and snack, it seems that we usually have goods talks about things that are important to him or on his mind.
Just know the other family members here know what you are going through and wish you good thoughts and hugs🌸


#5

Your whole post reminds me of my 24 year old son. He has ran all of his friends away. He thinks they’re all against him and have done him wrong. I’m like you…I have talked to family and friends about this before, but I don’t anymore because I don’t think they understand what we are going through with our son. He is on medication now, but don’t know how long that will last. He was just release from the hospital for his 3rd time and was given a shot that will last for 30 days. Our problem with him is that he want go back to the doctor for his medication and he will end up having a relapse or become a harm to himself by doing things that’s not normal. This is very hard on all families. God bless you and your family. Hugs!


#6

My son was very popular and outgoing before his illness but now he is lonely with his friends all gone. We tell him we are the 3 musketeers now ( mom, dad, and him) and tell him that we will never leave him and do what we can to help. I remember another post said dealing with a loved one with schizophrenia is a marathon not a sprint. So we are in it for the long haul.
I’m thankful that with his meds that he doesn’t have hallucinations and visions anymore. His rants seem to have lessened, though he still talks about what is bothering him but in a calm way.
It helps him to talk to his therapist at the health clinic, he has a real nice one that helps him sort out his feelings. He tried group therapy a few times but said listening to others talk about their problems were a trigger for him, it made him think about his friends and wife leaving him…
He likes to draw and has been writing a book on science fiction that is really good, he hasn’t been motivated to write since his divorce 6 months ago, but started writing again a couple of days ago.
Remember to make time for yourself and take care of yourself, sometimes going for a walk, or whatever relaxes you so you don’t get burned out dealing with the stress of taking care of your son.:sunflower:


#7

Thank you for sharing. It’s always comforting to know that others share similar circumstances and your spirit of hope is most welcome. On our good days, I’m thankful for so many things, and I try to keep my hopes up that one day he’ll have his independence back and he’ll be able to live a quality life again. I try my best to educate people on this horrible illness, but it isn’t well understood by many. Family and friends can’t understand why he doesn’t work, and has little motivation. Sometimes I too forget that this is a symptom of his illness.These forums do help to vent and I also belong to a regional Schizophrenia Society that is very active in educating, building awareness and supporting caregivers. For the most part, my family is very supportive, but it can still feel isolating when they ask how things are - generally all I have to share are that things are the same, no change, no progress. Knowing how bad things have been in the past, I should always be grateful for how much more stable he is today. I never would have guessed that this would be a part of our journey. Blessings and prayers for the caregivers and our loved ones as we walk this difficult road. :pray:


#8

I’ve been feeling much like you are right about now! You could be talking about my own son that was diagnosed a little over two years ago. He’ll be 31 in June.
He very rarely contributes to household chores, but finds plenty of energy for doing what he wants. He’s also been putting off, not wanting to deal, with some of his other responsibilities, mainly having to do with his switch to Medicare, information requested for his SSI. I finally did the paper work then told him it’s up to him to get it where it needs to go. Maybe I’ve been too soft, so I did have a talk with him…again. We had an agreement for him to live here, and he’s not living up to all of his end, so I reminded him of that, and of the consequences. Hoping this gets things straight.
I get the frustration, anger, sadness…it can be a rollercoaster ride dealing with everything. Oh, and the drugs/alcohol…yeah, that’s an ongoing one that,for me, probably won’t end. His sibs are his helpers there, ready to throw up my hands!
Chin up and chest out, as one of my good friends always tells me. It will work out eventually, patience and time will help it along. Big hugs to you, hoping better times are with you soonest!


#9

Thanks for the encouragement AmyW. Can I ask what consequences you’ve set with your son?


#10

Serqouel taken at bedtime and cut into pieces can give really good sleep. Start at 50 mg, increase from there to 400 mg… May need to adjust your son’s other psych drugs if the voices/social problems have not stopped as cannot take a bunch of anti-psychotics of different types. May need ambien too sometimes if he had a stressful day because physically, he is still on an adrenaline rush but his mind just cannot shut down. Can try supplement Melatonin too…Better to keep weight down or can get impossible to treat insomnia as ambien is limited to 10 mg only, no early refills even a day early in some states.

Do not try to drive with seroquel in system if drinking…Will be extra drowsy easily and possibly wreck. Will have bad morning after drinking bunch, then seroquel…Can stay home to drink and expect a bad morning. Go no farther than the living room couch after taking ambien. Some people do something weird if they try to take ambien sleeping elsewhere, live wake up on lawn in underwear…So you were warned.


#11

Well, the most severe consequence being he can’t live with us if he doesn’t comply with his treatment. This hasn’t really been a problem. But not helping with chores means I won’t give him a lift to wherever he wants to go. He plays music quite a bit, so lugging his instruments on the bus isn’t really an option for him. Of course I would never not get him to the doctors or hospital if he needs that. I’m just meaning things that are more privilege than need. Honestly my partner is better at the consequences, but I am learning…slowly. So far as his paper work getting turned in…I had to remind him that his benefits could be cut off, and that is all the monetary support he gets. Honestly, it sometimes feel like we are dealing with a child again.


#12

right now that is one of my biggest concerns is his social life i think he is very isolated hes used to having so many people always around but i do what i can and he goes to a place where there are activities and classes during the day they used to force him to go and he hated it now that hes in his own apartment and is bored he asked if he could go back twice a week and he picked the days i am encouraging him to get out and do something every day even if its just going for a walk outside but i think he enjoys just being able to choose when he will go and what he will do he doesnt do drugs but he does go get himself some beer sometimes i know because i come over to his apartment ( which is just a few blocks from our house ) and i will discover one or two beer bottles laying about so he walked up to the bar apparently .

He has never before lived on his own or has ever had such freedom as he has now and coming from such a regulated environment that hes been in the last 2 years i know that means a lot to him to be able to come and go as he wants to and choose to go buy that beer and is the first he has drank since he was 21 ( he had his first episode just a few weeks after turning 21 ) so i am sure drugs/alcohol and a social life involving them makes you worry about possible drug interaction but on the other hand im sure it has a positive impact on his emotional well being and self esteem so im glad he has more freedom but i do wish he had more friends . does this worrying stuff ever end :confused:


#13

I’m also an enabler have a tough time following through on any consequences or even just expressing my frustration to him for fear it will cause him to become depressed, really upset, or worse yet, to move out to who knows where. I completely understand what you mean by feeling like you’re dealing with a child again - I now see my son as a child in so many ways. His financial support paperwork was all completed and delivered by me. I told him repeatedly to get it done, and even wrote it down on a ‘to-do’ list, but maybe it was too much for him to get his head around. Since he needed the benefits card for his medications and financial support for his miscellaneous expenses I eventually just did what was needed to ‘get it done’. That’s sort of been my motto since this all began over 2 years ago - plow through and just take care of things. He always forgets to renew his prescriptions, even when it’s obvious that the supply is dwindling. It’s a simple process - pick up the phone and call in the renewal - I’d told him this repeatedly too but I just couldn’t take the anxiety any longer and I’m now managing this too so he won’t run out yet again. I try to remind him that he needs to eventually take control of his med renewals himself as I won’t be around forever to manage it for him. Instead of non-compliance with taking his meds he was over-medicating instead. To combat this, I now have the pharmacy pack his meds in bubble packs - so much easier for him, but primarily it has alleviated my own anxieties yet again. These behaviours could all be attributed to cognitive impairment as a symptom of the illness I suppose, but I question if this will ever change for him. I have yet to figure out the best tools to use to help him remember these important tasks. Well, beyond all the complaints I seem to have lately, overall he had a really good week this week and was very helpful with the yard work, doing the dishes and even making dinner one night . For these things I will be grateful! :relieved:


#14

I’m pretty sure the worrying will never end - I’m now a professional worrier! :slight_smile: But you’re very fortunate that your son has gained some independence living on his own. That’s great. Is he in an supportive living residence? I thought about this for my son, but so far he’s not too keen on it and I’m probably not ready for it yet either. Although, I can see how it would help with any isolation issues, and encourage self-management of the illness and using life-skills again (budgeting, cooking, grocery shopping, etc.).


#15

no its not an assisted living apartment ( or i should say it isnt technically but we have made it into one by myself becoming the assistant ) i give him his morning meds and evening meds and stop in and see how hes doing and if he feels like coming over to our house or would like a ride somewhere he doesnt drive be does have a car it needs a new battery but even after we get it fixed up he needs to be able to drive safely so thats more of a goal than something he can do right now because he has to be able to concentrate a lot better before that happens . I love that he lives so close i think if he lived even a town away i would be very nervous and i dont mind him living with us if he wanted to but he wanted his own place and so i wanted him to have his own place has your son ever had his own place before ?


#16

@johnsmom, Hello, I’m just stoping by to show you some love and give you and your son a big hug. Enjoy your weekend.


#17

It’s so generous of you to be so committed to being your son’s caregiver even when he’s living on his own, and giving him the support he needs to become an independent young man. He’s very lucky to have you. My son was living with a friend for about 1 1/2 years before he became ill. He moved back home after he was released from the hospital after his first psychotic break (he’s had two in 2 years). For now, it’s probably best that he lives with us until he feels more confident in managing his illness and is in a better place financially.


#18

I’m doing similar with my son, going over almost daily - I usually fix a meal, tidy up the kitchen a bit, and we chat. I keep his pill box filled, and check that doses are taken. He could be cheating, but I am sometimes there when he should take his meds and he always does without any words from me. The house he lives in is near my work, so 5 days a week it is convenient. Not so much on the weekends. We might have to consider him moving whenever I retire.

He loves his house and is proud of it. I only wish he wasn’t all alone. I’d be happy if he had a friendly housemate.


#19

That’s awesome! I’m glad your son is living on his own and is independent. And as a mother your there to support him. @Vallpen what is your story with your son?


#20

I think our story is pretty typical. My son is intelligent, and was excited to be in college. He was living with his dad at the time he started college. He had his first episode of identifiable psychosis the Spring semester of his first year. He had begun socializing with people who introduced him to “recreational drugs”. In retrospect, he may well have been showing signs earlier, but - we know how it is.

After a very tumultuous couple of years, and a few more hospitalizations, he eventually was diagnosed, and, because of some legal involvement, he had to go to a group home. It was actually a pretty well run one, and he was getting stable on risperdal. He tried going back to school, but was unable to make much progress.

In a strange twist, when he was able to, he checked out of the home, and got married a few days later - but then they went to live with his dad. The relationship quickly deteriorated, she disappeared, he stopped taking meds, and the situation at his dad’s became impossible. So his dad put him on a plane and sent him back to me.

As soon as I saw him get off the plane, I knew he was not well. He was ducking behind things and muttering to himself. The intent was for him to enroll in college here, and he had gone thru the admission process and been accepted. The semester was to start in about a month. I had found an apartment for him near campus.

He attended a few classes, but was paranoid and psychotic. He was in that apartment for 6 months. He was picked up at that point and admitted to the hospital, and ended up staying about 3 months. I cleaned out that apartment, put his stuff in storage, and when discharge was planned, helped him move into another apartment I had found. He stopped taking his meds, and started getting psychotic and paranoid again. That apartment also lasted 6 months. They started eviction process because of complaints about his noise and behavior. Another hospital stay. Next, a residential facility for a few months. He hated it. Another apartment. Another eviction. Another hospitalization. Admission to a different residential facility. At about this time, I was awarded guardianship, which helped with making medical and housing decisions, and participating in care. It didn’t help with compliance or make the meds work any better tho, and the responsibility of making those decisions is a whole other kind of stress.

During this period, several different meds were tried, with poor response. He would always end up psychotic again, even with injectables, which were supposed to be the answer, since he was sometimes not compliant. Finally, he got beat up at the last residential facility, and it was also decided that he needed a locked ‘level 2’ facility. This basically amounted to a nursing home that had a locked unit.

I’ll tell you, things got to a real low point for a while. Seeing my 20-something son in a nursing home was depressing, dealing with the constant stress was horrifying. My husband, my son’s step-father, had his fill of worrying about me being hurt or our house destroyed, and finally decided my son could no longer come back to the house to visit.

For a while my son was on a med that seemed to be working, and it was decided he was ready for independent living again. Knowing an apartment was not going to work, I found the house that is close to my work, and he moved there. Either because of non-compliance or ineffectiveness, he started struggling again after about 2 months there. He had 6 hospital visits last year. I was close to deciding he couldn’t go back to the house. He had case management, but doesn’t want to participate in it. Finally, in January of this year, he was started on clozaril. I think its doing its job. The dosing is simple, and he is compliant. We’ve been experiencing a much needed stretch of relative calm.