Family and Caregiver Schizophrenia Discussion Forum

On Taking a Chance and Fighting My Fears


#1

As everybody probably knows my son, now 33, has been in remission of the positive symptoms of his Disorganized Schizophrenia and his seizure disorder has also been under control, both for well over 2 years now steady. Life is good. We have a routine. Peace prevails (mostly). I am truly grateful for how far he has come.

He still has all the negative symptoms everyone talks about, but he and I both manage with all of that pretty well I think, we just have much lower expectations than most families. With me being home we just keep life as simple as we can and it works.

I am writing because last year I had the joy of getting reunited with my best girlfriend from high school, we are as close as sisters, and even though we had not seen each other in 40 years when we met again it seemed that not even a day had passed. She is still as much my “sister” as she was during high school.

So today we talked and she knows about my son and she wants me to come and visit with her in Michigan, (I am in Ohio) the trip is about 5 and a half hours one way. She wants me to spend a couple of days with her without my son, only so we can have some time together and because my son has already made it clear he would hate being a “third wheel”. He has often said he thinks I should go and that he will be just fine.

I am seriously planning to do this in a month or two, whenever I can find a couple free days, I am thinking of leaving on a Tuesday or Wednesday and returning on a Thursday or Friday, making it about 72 hours away.

I feel like my son deserves a chance to see how he can do on his own, we do have a predictable routine, he knows he will have to pick up the slack. I know he will do things his way and that will not be my way and I can deal with that so long as no serious health or safety issues arise.

More than that I feel like after more than 12 years of daily care for my son since his diagnosis and never really ever being apart except for hospitalizations -I deserve time away on my own. I want to know what that feels like again.

The problem I have is I am just scared. Best laid plans, and all that. I don’t have a support system around me, no family that backs me up and most of my local friends are more friends in name only it seems, because they are younger with busy jobs and young children and never seem to have any time for a visit with me, we were close when I worked and we could meet after work for a drink or whatever, something I never do anymore and haven’t done for many years.

So I have no one to check up on him and he would actually be appalled if I even suggested he needed to be “checked on”.

Regardless of my fear, I think it is sound with the evidence I have on his wellness thus far to take the chance and leave, I understand things can change but I don’t know if that is enough reason to never leave him alone when he is not exhibiting any positive symptoms. I worry about the seizures but he hasn’t had one in 3 years and I worry about him suddenly becoming delusional but he hasn’t been seriously delusional for at least 5 or 6 years, there has been a few moments and a couple of delusional arguments that lasted 2 or 3 days where he sulked because I wouldn’t go along with what he was trying to make me believe. He came out of it though on his own and in a relatively short time. Above all he is miraculously very med compliant.

I would appreciate hearing some thoughts on the subject. How has this type of thing worked out for others if at all and how do you manage your own fears even when they seem to be leftover from surviving a very traumatic past.

Either way I am making plans and truly just hoping for the best. Trying not to feel selfish or irresponsible.


#2

I don’t think you are being selfish or irresponsible.

I wonder whether your son’s medication doctor could be someone you ask about the plan. I think a professional could provide the reassurance you need and possibly even a place that would know your son is on his own, somewhere he could call if he needed help.

The trip sounds like fun.


#3

I would love to be able to talk to my son’s doctor about this but she thinks he is perfectly fine because he is not psychotic and hasn’t been for a good while and she will not provide me with space to inconspicuously talk to her about my personal concerns without setting off my son’s paranoia of “being talked about”, she is the first doctor my son has had that has been this way all of his other doctor’s worked with me very well and very privately when needed, and I haven’t changed her because I haven’t had a problem other than just need the scripts refilled. Plus we have a shortage of psych dr.'s here and my son has been on a long waiting list for a p-doc at Ohio State University hospital which would be so much better but the list is like a year long or so. Anyway no help there. I will bring it up to my own counselor next week and see if she has any ideas on resources to maybe check on him if at all possible, He won’t like it, but I will. Everytime my friend and I get together I feel like a silly school girl again and we talk all night…so fun and so rare.


#4

Hi Catherine,

My son has been pretty symptom free for a year and we do leave him for short times. In January it was 9 days, but back then he did have a friend that stayed here with him most of the time. We’re planning on 3 trips this summer for probably 3 nights apiece. My son gets lonely and I don’t like that. We have no support system either, so I worry a lot. But he can cook, drive (doesn’t drive too often but can and will - and he’s a great driver), watch TV and pace. These days he really mostly watches TV, eats and paces. He has negative symptoms really bad and can’t get himself to do anything. Sad. He goes a lot with me when I go to the store or we’ll go to a movie, a park, shopping a bit, etc. When I’m home he’s not too far away. It’s so, so hard to leave them. If we didn’t have cell phones I couldn’t do it. But my son and I talk once a day when I’m gone, usually evening. If he needs something in between, he can text me, but he never does. My son can do it on his own too but it’s still scary cuz there’s all of our “what if this happens.” Do you both have a phone? Do you text each other? Probably don’t have a reason too but it’s a lifeline. I always feel better after we’ve been in touch. You deserve the trip. My son would be mortified if I had someone check on him. I wouldn’t live that down so I know what you mean there. But I think when I get back home and we both survived it, it makes everyone feel better. I think it boosts my son’s confidence and it’s nice to have a breather. Enjoy your trip. You deserve it!

One of my favorite sayings SO fits here: Stop being afraid of what could go wrong and start being positive about what could go right. ~~ hugs ~~


#5

Do it, do it, do it!

Is there someone who your son likes who would be able to make scheduled drop-ins? That’s the way I did it a couple of years ago. And hope to do again this year.

DO IT!


#6

Thank you for that, yes my son and have cells. My son wants me to go so I said you have to text or call everyday and he says he will.


#7

No, there is no one he likes other than my one estranged sister not the schizo-affective one but the narcissistic one we haven’t seen in years, and I don’t trust her at all. So there is no one and he would be so angry at me if he felt I didn’t trust him. I do trust him, I don’t trust the illness…but I believe we can do this.


#8

That IS a good saying! Hugs to you too!


#9

Completely understand the ‘you don’t trust me’ thing. My approach was to say it wasn’t about not trusting him, but just don’t want him to be lonely, and to have a little company to break up a day.

Another time, some friends had him over for dinner one night.

Does he at least have some numbers he would call if he needed help with something?

My son uses Facetime with his dad, that is another good option for staying in touch.

I was SOO anxious about my son attending a concert recently, but it went well, and he has even reached out since then to my coworker who went with him. So… that saying from JulieAnn held true in that case!


#10

We have experienced what they said it would be like in FTF. All changes stress them somewhat, leaving our son by himself stresses him, as does our returning home.

We leave Jeb rather regularly. We really need those weekends and vacations away. He knows I have my phone on 24 hours a day. I will sleep with my phone under my pillow, turned up loud. I want to be sure to hear his texts come in if I’m asleep. We let the neighbors know and we have outside cameras that help us feel better that we can access through wifi.


#11

He has the standard emergency numbers on a magnet on the fridge and he would be far more likely to use those than he would “phone a friend” since he really doesn’t have any friends, I mean he would have had friends over the years many of them if he had ever called them back or responded to them in anyway or said yes to their invitations. I tried to speak for him with “friends” at first and it felt so wrong, contrived and disingenuous, so I decided to leave it to him knowing he would not follow through. Some things ultimately are what they are. He doesn’t get lonely, and if he does there would be no way to know. I know he misses me sometimes (if I am gone for an afternoon) because he says so. I ask if he misses other people and he says he has no feelings either way. Strange mix it is. I have to accept it. He has to take the lead in some things even if I don’t like it. I kind of think he will relish the alone time as long as nothing stressful happens that is unforeseen.


#12

Some great advice here. I hope you DO go and have a wonderful time. You have earned it tenfold.


#13

Even though my getaway is a few weeks off I have already turned over coffee making and medications to him. I thought about why I have done those things every day for over 12 years, and​ it was because in the beginning he would use a half a large can of coffee to make one pot…and he got far too confused over the medicines, did I take it? What if I didn’t, what if I took it twice? It was just easier for me to hand it out twice a day. So far so good. Small things can be big things sometimes. I am already kind of excited thinking what other responsibilities I can turn over to him in the future. Baby steps. :smiley:


#14

Catherine, your son sounds more and more like my daughter each time you post. And they both have the same diagnosis of disorganized sz. If your son is in favor of you going and not afraid to be by himself, then Go, Go, Go for it. You can text or call him daily and it is such a short time you will be gone. I think the joy your trip would bring you will last a very long time and do you a world of good. We all need a little respite at times and get so few opportunities. You have definitely earned some fun time. Hugs and prayers to both of you.


#15

What a great opportunity for you both! I say do it. It will be a good for you to get out and for him to build his confidence in doing it on his own for a bit. He seems comfortable with it and has quite some time with stability under his belt. If you had someone to drop in maybe they could be discreet and drop a meal by just saying they knew mom was gone and wanted to help with dinner. I’m really excited for you!


#16

I keep my son’s pill tray filled, but rely on him to take his meds, which he does. When refilling, I always leave the current most recent one that was taken open, to keep him oriented on where he is on doses.


#17

that’s a good idea-will suggest he do that…


#18

I recently got my son a clock off Amazon that’s really designed for old people.

I got it because they’re always asking if he knows the date or what day of the week it is, and he never does. That’s normal whether he’s well or not - it’s just not important to him. He usually knows what year it is and who’s president, maybe even what month.

But, the clock is about the size of a 5X7 picture and sits like a picture frame. It has date, day of the week, whether it’s morning or night, plus the time of course.

It also has multiple alarms people can use to remind them to take their medicine. I think I saw models with everything from 2 to 5 alarms you could set.

The best part was it somehow knows what time it is when you first plug it in, so if the power goes out, it’ll be correct when the power comes back.

Maybe it would help him if he’s at home most of the time?


#19

He is okay on the times, just the empty spaces in the pill box confuse him sometimes…but he takes his pills when he goes to bed and when he gets up like clockwork, That clock sounds good though. I use my phone like that…I always have alarms going off all the time…talk about an old person! LOL


#20

Sounds like your son is doing great. My son who is 30 lives with us but has his own studio apartment in our house. Feel as long as they take their meds things can be more normal. I have family support if I go away, but when I think he survived living in los Angeles a year, when he became paranoid, he would be ok for a few days on his own. Go for it!