I try to remind myself that I need to be thankful that things aren’t worse with my son, because I know they could be, by a lot. I do appreciate this, and that is generally what keeps me going. Lately I feel myself getting overwhelmed and wonder if I will ever be truly happy again. I heard a quote today that really hit hard. “You’re only as happy as your least happy child”, so true. My constant worry and sadness about our son is interfering with my relationship with my husband and I try hard not to let it affect our younger son. I don’t want to regret not fully enjoying the rest of his childhood because of this. Thanks for listening, just needed to get this off my chest. I know everyone here understands this all too well.
7 Likes
Hi Cat_Nip, I have always disliked that quote - maybe its because it has a ring of truth in it.
One of the biggest struggles I had was stopping the worry and sadness in the early years. We grieve for our children and their struggle just like any parent would grieve for a child with any medical condition. Working to help our children get to a good spot can feel like we are working a difficult puzzle.
Yes, I am sure many of us have been there, as we struggle to meet the needs of the other people in our family and our own needs while under a burden of grief.
Recently I have been doing a lot of reading about grieving. NAMI tells us that grief is our number one issue. We grieve living children and the loss of what we had before. We have a lot of added worries, for many of us, things we never even thought about worrying about before have become a part of our lives.
We do have to deal with our grief. We have to figure a way to lighten its presence in our lives. We need to be as mentally healthy as we can be, if anyone knows the importance of mental health its us, right?
I have learned to lean into grief when it falls over me. I lean into it, and then I step away and do something else. Just recently I learned that it is equally important to lean into happiness. Sometimes that happiness can make us feel guilty just like we can feel bad about feeling sadness and feeling overwhelmed.
Thanks for all your posts!
11 Likes
Thanks @hope. They always say that someone suffering from SZ shouldn’t let it define them. I guess I am guilty of not only (unintentionally) defining my son by his illness but also defining myself by it, or like you said the grief associated with it. Thanks for sharing how to navigate this path.
5 Likes
Good point Cat_Nip, it can be easy to start to define ourselves by grief, I hadn’t even thought of it that way.
The Joan Didion book I read about grief pointed out a difference between grief and mourning. She says mourning is where you begin to deal with the grief. She doesn’t say how to deal with the grief. I suspect grief is the main work of caregivers and their therapists, its an individual journey for all of us.
Like that old joke -How many therapists does it take to change a lightbulb? Only one, but the lightbulb has to want to change.
Step one is possibly wanting to change. I remember a long time ago my first break through moment was reading a line in a novel. I can’t remember the name of the novel. The character had been through a good deal and was fearful about the future. The character was advised that they would survive and come through it all, but they would never be the same person again. I realized I was fearful with worry about my son’s life and I didn’t want to live being afraid anymore.
We will make it through, but we will be different.
8 Likes
Wow. @hope and @Cat_Nip great thoughts. I needed this today. Your comments on allowing our grief to define and/or direct us hits home.
We’ve actually had several good days recently. Then yesterday learned my son had yet another wreck - no one else involved thankfully. But totally ruined the side of his truck by driving over/against a large decorative boulder.
I was lamenting about how much $ we’ve spent on my son. From adoption to schooling to home damage to treatment facilities to medical and mental care and now to living expenses. It got me down/depressed thinking of the money we’ve ‘wasted’ in our pursuit of loving our child.
My desire to provide for my entire family (wife, 2 other kids, mom, others) is a heavy burden I place on myself. And days like yesterday seem to reinforce my guilt for feeling this way.
But this illness, nor the emotional cost (grief, depression), nor the financial cost, will define us. Unless we let despair win. Thanks for sharing.
6 Likes
Your post and all of the replies resonate deeply. While I am grateful for the calm times and know things could be worse, I find myself wishing for the time when I knew nothing of living this close to mental illness. I envy those who can still live their lives blissfully unaware. And I feel petty because I’m not the sick one and my son did not ask for this any more than I did. But the pain of seeing him suffer and the burden of picking up the pieces emotionally, legally, logistically, financially is heavy. I’m thankful I have a safe space here to vent unfiltered and say what is hard for some to hear.
Wishing us all peace in this journey until a real cure exists.
8 Likes
@hope
I’m going to look for the Joan Dudion book, sounds like a source for very useful insight. I recently heard a term for this type of grief, it’s called “ambiguous grief”, grieving someone who is still alive. Here’s an article about it.
Also, I love the lightbulb joke!
6 Likes
@Leann I totally agree about longing for a time before becoming so closely tied to mental illness. I get so upset when I hear someone flippantly say that someone is “pychotic” without understanding the true meaning of the word. Prior to this I wouldn’t have thought anything of it. I guess one good thing though is I’ve developed a lot more understanding and empathy for those that you see that are suffering and homeless. I felt for them before but now it’s on a completely different level. You hear people being critical or even laughing at someone’s behavior caused by a mental illness when all I can think about is- that’s someone’s child and how painful it is for not only the person suffering but their family as well.
2 Likes
Thanks. Not even close to being hurt. Just turned hard out of his apartment and clipped a huge decorative boulder. But instead of stopping, he just punches the gas and the boulder. tore down the right side of his truck like an iceberg thru the Titanic.
No easy day. 
1 Like
Thanks for the topic and all your replies. I am really struggling with guilt, mourning and grief. I told my son no I would not cosign on an apartment with him unless I was his payee for his SSDI. He has known this for 6 months and suddenly it has to be done now. The reason it is not done yet is because of his failure to answer my text or phone calls. Such a complicated situation. It will be a couple more weeks before I will be his payee. I’m trying to say to myself well it’s all his fault! Then I remember how sick he is. I guess for today it just is what it is. Thanks to all
4 Likes
" You’re only as happy as your last child" well that saying has been thrown out as my son with schizophrenia is the oldest of 3. My son could be worse than many i read about but this doesnt stop the sadness of him not living the life he should have had. The mental torment he goes through and the isolation because of his symptoms and trust issues. There are a lot of sayings/quotes/opinions out there that i used to take on board during the early years… all made up by someone! If there is anything wrong with any of your children whether its first or last, its a natural instinct as a mother to want to fix it. Feeling sad is normal, I feel sad right now knowing others feel like i do. This is why others here will understand you. Feeling understood goes a long way x
3 Likes
So true! (For Dads too!!). The saying I’ve always heard is “You’re only as happy as your saddest child”…. But there are surely other versions.
It’s impossibly sad. We are grieving the loss of a life that had a different trajectory. Our beautiful, happy, promise-filled son… lost to a new, scary, dark reality.
Yet we grieve in silence without any public acknowledgment of a death, funeral, or services. We just quietly move from hope to Despair/Loss with no clear marker.
This is a painful journey but there is hope on the other side. Learning to grieve - to ALLOW yourself to grieve - is a first step. Then acceptance of a new reality. Then daily, baby steps at helping them live their best life.
And occasionally glimmers of hope, laughter, and love. Hang in there. Even in the darkest of nights. Coming from a dad who knows I’ll likely be visiting back there soon enough…
3 Likes
In that case i did read it wrong, but as i said if your child no matter how old isnt happy as a mother you want to fix it. An inbuilt need to protect, when you cant fix something and if goes on indefinitely this causes on going stress and sadness.
2 Likes
My daughter made me laugh! She was talking about a voice that she hears and she said she gave it a name since it won’t tell her its name. She calls it Posh, she then said that Posh complained the the other voices were calling her (Pussy). My daughter then stated that she thinks Posh has schizophrenia because she never hears the voices talking among themselves. So Posh must hear voices. I just looked at her and started laughing. All I could think is a bumper sticker that says my voices have schizophrenia. I know I’m a little messes up, hope I didn’t offend anyone. Have a wonderful day.
9 Likes
I’m in the—“not a fan”—group as well. I don’t have children, so it’s easier for me to identify with being that saddest child at times, but I think it’s a bit much to be held responsible for my caregiver’s happiness on top of being depressed. When on the edge of the abyss, what consistently made me feel worse was thinking people were pitying me or feeling sad about or for me. Poor thing or bless your heart vibes, real or imagined, weren’t particularly helpful. Once you’re in your black hole, you’re often too self-absorbed for them to register much at all, if that’s any consolation, however.
I feel there’s a bit of a corollary that ideally the cared-for should have a caregiver in good health to improve or maintain. Which means take care of yourself, even if that requires sharing how you cope with your sadness. I tend to believe people are as happy as they want or care to be, and being able to seek-out, receive and accept help is an important component of that.
My family’s been going through various forms of more traditional grieving and mourning lately mixed with this sort and a combination of remembrance and self-deprecating and gallows humor seems to help. There’s a form of mutual and self schadenfreude that we’ve established that soothes somehow.
Some examples:
My sister had a much loved family dog that needed to be put-down and she’d been crying daily about it, and I introduced her to David Sedarais’ humorous essays about his family’s predilection for Great Danes— who as a breed struggle greatly with longevity. I feel his combination of humor and pathos soothed her pain.
Or my mother and siblings sharing the “miracle” of my brother with bipolar disorder straightening himself out sufficiently to speak at my father’s memorial. He’d been incommunicado for nearly a week and we’d been calling and texting him without response. Prior to this he was on multiple or one continuous bender(s), so we imagined either he was locked-up somewhere or unconscious or dead. I drove by his house and his uninsured van which he had others drive him around in had disappeared. My mother met me there with a key which proved unnecessary because the lock didn’t work—likely un-repaired fallout of a SWAT team breaking down his door during a crisis years earlier. I made my way into his hoarded-out house, preparing for the worst. My mother was appalled at the state of the house, but we had a service to attend to, so it would have to wait. I yelled his name climbing over debris, searching room to room and found nothing stirring aside from his cat. With both the van and my brother gone, I relayed the news to a friend who started checking local jails and hospitals and one of my nephews was placed “on deck” to read his Bible passage at the memorial.
Alarmed, but realizing the show must go on, my mother and I met up at her condo near the church to collect a few things. And who was there, but my brother, shaving himself in her bathroom—bleeding from nicked skin and requesting a styptic pencil. He’d taken a cab to the condo and seemed oblivious to our combination of shock, alarm, relief and joy at seeing him. The memorial went off without much of a hitch, although his reading was a little marred by him awkwardly stumbling up the stairs in cowboy boots and sunglasses, and losing his place in the text here and there. This “miracle” has been a touchstone for us in grief at times. While we could have chosen to focus on these events as evidence of the tragedy of his illness(es), we chose to see it light-heartedly as a triumph within a tragedy.
11 Likes
I think a dark humor (or, if possible, just regular humor) can really save us. All of my sons have some sort of cognitive challenge (my twins have severe autism and live on the campus of their school). My husband and I have really gotten through by being able to enjoy a lot of the absurdity of our family life.
My son with mental illness can joke around with us when he’s doing all right. My sons with autism live life how they like, jumping around and singing Michael Buble, Sesame Street or Backstreet Boys perfectly, even though they can only speak in two word phrases. On weekends when all three boys are home, it’s pretty chaotic.
I love David Sedaris and I’ll have to find the essay about his family’s Great Danes.
We have to laugh to keep from crying sometimes but it does help.
7 Likes
Hi Cat_Nip. I go through the exact same sentiments. Our youngest child’s illness has been extremely hard on my marriage and has created so much gut wrenching anxiety for me. I am slowly learning to detach with love. We help our son but try to stick to strong boundaries. Its good to remember that we never would have wanted this for our child and are not responsible for this illness. We have to take short periods of time where we just lock this stress away for awhile and try to mediate or do something we enjoy. Its so critical for our own well being!
God Bless You on this crazy journey.
5 Likes