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Caregivers having trouble with friendships


#1

I looked for a topic that covers this… couldn’t find it so I thought I’d bring something up that is happening to me and see what people have to contribute.

I have a few friends I see regularly who know what is going on with my son, sort of, but really don’t understand how much it affects me. I had a REALLY bad day the other day when the three of us were together - as in I couldn’t hold back the river of tears, couldn’t take part in conversation, it was just awful, and they grew irritated with me and even after I apologized and tried to explain, things aren’t the same. Like I think our friendship is over, at least for now - mostly because of the way I feel, which is totally let down and unsupported by them.
These aren’t lifelong friends or anything but still, I thought they were more than just fair-weather acquaintances.

Have other people had to stop seeing friends outside of the mental illness circle? Do you find it hard to make small talk when things are bad at home? Do you find other people’s issues painfully trivial sometimes so you don’t know how to respond? For example, one day I said my son was psychotic again and my friend said she couldn’t get the right tile picked out for her bathroom… as if these problems were equal. How do you respond to that?

I don’t want to isolate myself and yet, I don’t want to be around people who just don’t get it either, at least not until things settle down a bit, which likely won’t be any time soon.


#2

We belong to a group of individuals no one wants to join. Parents or caregivers of those with schizophrenia. I have been at this for over 10 years, and prefer not to discuss my dsughter’# illness in debt with people. I have let go of expectations from others, just as I have of expectstations from my Daughter. When my expectations are non existent, I have more peace of mind.


#3

“We belong to a group of individuals no one wants to join.”

Boy is that the truth.

I guess that means I will have no friends for the foreseeable future.


#4

The ugly truth… it is very rare for people to try to understand and research difficult topics such as mental illness unless their lives have personally been touched in some way. It’s hard for people to empathize and try to relate to something they don’t have any experience with.

I suggest trying to find mature friends with some common ground. It might be difficult to find other people who have a loved one that suffers from schizophrenia, but there are other common illnesses and disabilities out there that have similar features that people might be able to relate to. PTSD gets a lot of attention in the military community and can have many similar traits to schizophrenia - anhedonia, psychosis, “triggers.” People with schizophrenia often have difficulty with executive functioning (such as planning or staying on task) and so do people who suffer from ADHD. I’m sure parents of children with autism or Asperger’s could empathize with the sometimes socially awkward situations that we face with our loved ones. None of these are an exact match to schizophrenia, but my point is that it might be easier to make/keep friends when you find people where you can see similarities instead of differences.

That being said, I also think it’s perfectly healthy if you want to maintain different friendships for different parts of your life. I have some friends that I only really speak to about upbeat silly things and then I have other friends who are more level-headed, attentive listeners for serious topics. I have health-nut exercise fanatic friends I ask for advice when I’m on a diet kick and introverted laid-back homebody friends when I’m not. :stuck_out_tongue: It’s rare to find friends you can talk about anything and everything so I try to hold onto those gems as long as I can. :slight_smile:


#5

In this particular situation, my issue was loss of control of my emotions. The night before had been a particularly bad one with my son and I set out next morning with the best of intentions of having fun sharing an activity that these friends and I love.

But the tears came and I just couldn’t stop them. I lost control of my emotions and apparently, was difficult to be around. I didn’t get the understanding/support from them that I would have hoped I’d get.

I realize you can’t tell everyone you meet, hey, my son has scz - how is your day? But I’d like to think there are people who, even if they don’t understand, can at least be supportive when I am losing it. It is sad, but I don’t have that in my life at this time. I have it with my dear husband, but not a girlfriend.


#6

I can completely understand your disappointment! I’ve been in the middle of venting and had someone change the topic to something trivial before. Are they close enough friends where you could mention that it was hurtful that they changed the subject? Perhaps they only thought you needed to take your mind off things and they were trying to steer the conversation to something neutral. However, if they really did think their decor was more important, I don’t think there’s much you Can say. That would be pretty thoughtless. :confused:


#7

I agree that we belong to a group no one wants to join but I got lucky and have a very good friend who has no history of mental illness in himself or family. I can call him 24/7 even if I just want to cry. Always understanding and supportive . As far as other friends, they don’t want to hear much about my son so I stay quiet even though I’m bursting inside. I also sit back and listen to their woes which are trivial and control the urge to say YOU NEED TO WALK IN MY SHOES FOR A DAY


#8

That is not true! We are here until you find some new real friends with skin on.


#9

I am so sorry JooJoo. While I am so angry that they had the gall to be irritated with you, I do realize that these sorts of Majority Others, those who don’t know what we are dealing with, are just clueless. While you may get casseroles and sympathy for the loss of a child, stay sad about it and see how many people are urging you to “get over it and move on with your life”.

I’m not excusing their behavior, but its on them- its not on us. Our pain is real and we have to deal with it, even more so on a vulnerable day.

You might have friends that aren’t afraid of your emotions in addition to those on this form. They just don’t have any idea what you need and how they should behave. Or maybe not, so many of our friends just want to avoid the despair they can’t understand, that can be our lives at times. No matter how strong we try to be, some despairing sadness and grief is going to leak out from time to time.

While we here are skinless, (@Mom2) we are pretty tough on this forum and we can take it.

What I have found is that probably after about 3 years post diagnosis for us has we learned how to live with our emotions regarding Jeb and his scz, **** Okay as I write that its total bs we have not “learned how to live with these emotions”***** BUT husband and I have found the strength to get out from time to time and act like the Others.

We finally can: Go to dinner and not talk about Jeb. Spend time around other people and not talk about Jeb. Pretty soon we found out we could do something and not think about Jeb for a little while. We could have moments in our life that weren’t about being sad about the loss of our beautiful Jeb to this illness or about that same son, our Jeb that remains and struggles every day.

Those moments do help. As we stepped out back into life a bit, a tiny handful of our friends did show back up in our lives. They sometimes seem as uncertain about being there for us as we are uncertain about being back out there with them.

You tried JooJoo - so glad you have your dear husband in your life. Years ago on the living donor kidney forum there would be people who needed kidneys who said all of their family and friends went radio silent when they put the word out that they needed a kidney. They were surprised and so grateful when a donor would step forward. But still terribly hurt that everyone else they knew had shunned them.

I think if a person falls down into a deep hole far away from home and they can’t get out of that hole on their own, they are fortunate if there is one person in the world who will get on a plane to go and pull them out of that hole.

For those of us who have landed in this particular hole, luckily there is internet access.


#10

My “friend”…

responded: “I know…I know…last night we slept with the new silk sheets I bought, and they kept sliding off the bed…ALL NIGHT!!!”

Really? REALLY?

You didn’t just do that.
Glad I wasn’t really opening up.

S.


#11

I really think people just have no idea how to respond if they haven’t suffered from hardships themselves. :confused:

That’s why I think it’s a good idea to find friends who “get it,” friends who can relate to real struggles, whether they have a loved one with schizophrenia or something else.


#12

JooJoo, I’m sorry you didn’t get the support you needed. I’ve done the same thing once with my sister and with a couple of friends, my pastor and in a group book discussion at church when I was asked to read an excerpt from Kay Warren about her son who committed suicide. It was a bit too close to home and I lost it.

It is grief. And it is sad.


#13

I am really lucky to have one friend I can talk to/ who spends time with us and has helped us and one who has helped during hard times though cannot really talk to her. Also, the support group I go to socializes together.

Over the years of my family member’s illness, I lost my ability to be a fun social person, but I don’t miss it because I still have fun in different ways and have a few people, including my family member with sz, to joke around with and spend time with.

It hurt so much at first. I despaired at the transition/ exile into this other world. Now, I like this world better than I liked the other one because, here, no one is left out and no real pain is dismissed, ignored, denied.


#14

Yes, because its a legitmate worry when one of ours goes radio silent and someone else is using their credit card.

When President Reagan was shot by John Hinckley Jr, in her book, his mom said so many mothers wrote her afterwards that at the time when they first heard the news they were afraid it was their own child who had done it.


#15

Maybe your friend is vocabulary deficient? Deaf? Or maybe this was a defining moment when you saw your friend as she truly is. I am sorry. I am fortunate to have supportive friends. I do try not to overwhelm them because it is overwhelming. Sometimes I share funny stories, sometimes stories with sadness and tears.
But I also know and they know on some level they really don’t get it. That is ok.

That said, when a friend cries whether you get it or not, they should have compassion. Again I am very sorry this happened, but don’t give up. There is a “skin” friend out there somewhere until then this forum is here. Hugs.


#16

My “friendship reality” has changed a lot during the course of caring for my son. Before he was diagnosed and when he was still as student, I had what I call “hands on” friends meaning we saw each other several times a week, ate meals together often, shopped together and literally could discuss just about anything. I felt like at least one or two of them always had my back in any trying situation.

After my son was diagnosed and especially when he was the most ill, friends seemed to just drift away. I take responsibility for my part of that as I was not available much of the time and if I was I was too tired or too stressed to disconnect and be present for someone else besides my son and secondarily myself.

Many of my ‘work’ friends, that I use to hang out with after work- still stay in touch but only through social media. I have extended invitations for lunch etc, and explained things are very calm and peaceful around here now, but no takers. They are mostly younger than me, married, and still have young children, so there’s that.

I have a couple of friendly acquaintances around town that I run into every week or two, we briefly hug, say “wow you look good what’s up? and we should get together sometime!” and nothing ever happens year after year. Oddly enough (and with the help of therapy) I am kind of okay with that. Don’t get me wrong I would love to be able to have some intellectual conversation and maybe cook up a delicious lunch with a bestie, and maybe watch a movie or go for a walk together, but at this time in my life I kind of think I am where I should be.

I do have what I call some “lifers” friends that I will call my friend till the day I die, one I have known for 33 years, and the other I have known for 44 years…They live pretty far away but either one would always pick up the phone if I needed them and we talk and connect whenever we can…but sometimes we don’t talk for many months, it never seems to matter and all of us have such complicated situations in our lives that visits are rare for any of us. I understand and I know they do too.

I have to say that my caretaking and consequently survival experiences with my son’s sz, my sister’s sza, my mother’s major depression, my older son’s asperger’s and anger management issues and my own ptsd has changed me so profoundly that I don’t believe I can “do” friendships like I once did. As a youth everybody was my friend and I could kibitz and socialize like a champ…none of that matters so much anymore…I think IF a true NEW friendship opportunity of any substance was presented to me it would have to be one where I can be exactly who I am even if that means antisocial sometimes. I would have to be able to trust the person implicitly or feel like that type of trust was possible. Small talk would have to be very rare if at all…I don’t have the patience for it anymore. If I ask you how you are doing it is because I REALLY want to know how you feel because I care that much, I don’t want to hear fine if fine is a lie.
If there is to be new meaningful friendships for me in my future I am content to wait and let it unfold however it is meant to. Increasingly, I get out and about with different activities, so it is possible. Until then I’m okay.


#17

Totally! Exactly what I was getting at in my initial post. Bursting inside, sharing only about 1/16 of all that is happening, and then listening to trivial problems.

I didn’t mean to indicate I don’t have long term friends who are totally understanding - I do. I have a handful of ladies who will listen and are sympathetic because they’ve all known my son since he was a little kid and in our group, all of our kids have some sort of issue that we all lament. I don’t see them very often though. The friends I see more often are ones I share common activities with. These are the people I have trouble relating to in these trying times.

Really appreciate the responses. I know I’m not the only one going through this! It is SO challenging, as we all know. Every day still brings grief, profound sadness, sense of loss and anger.


#18

Our family found that the best sources of comfort and friendship when talking about our ill family member were other families who were in the same position. I recommend you try to join a support group like NAMI in your city if you can for this type of friendship.


#19

I am 5 classes into Nami FtF and am also involved in the "multi-gamily group’ that my son’s early intervention program offers. No friendships have formed yet but I am still holding out hope for that.

Clearly we have to compartmentalize our lives and know ahead of time who is ‘safe’ to open up to and who is not. I know this and am learning that it’s best to say as little as possible with people I meet in the activities I enjoy - unless of course the grand discovery is made that they too have someone at home…(this hasn’t happened yet).

The part I struggle with is controlling my emotions. At times I just become overwrought with sadness and I can’t ‘act as if’ it’s not happening. That is the time I truly struggle when I’m with people who don’t know. I guess it’s a dance we all have to learn. Part of the new reality.


#20

A friend I had known all of my life, a friend whom I had supported through her son’s mental illness and her divorce, abandoned me when my 14 year old became psychotic. It was horribly painful. But some people can’t handle being with someone in pain.