The grief for our ill children is like no other.
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Hi Day-by-Day,
This is what I had written down once, I donāt remember the source.
"Mental illness needs to be recognized as a major loss. The primary distinction between mental illness and death is that mental illness is not recognized as a significant loss, when, in fact, loss may be the primary trauma for family members during the course of the illness. Furthermore, families experience chronic loss because the ill person cycles between periods of stability (life) and periods of psychosis and instability (death).
Parents agree that recovery is when their son or daughter has some measure of stability. There is no cure for mental illness, and symptoms often recur, but accepting and learning to manage oneās illness is success. Addressing recurring symptoms and moving forward each day, even if by inches, is success. Having routine and purpose, and satisfaction in oneās life defines recovery. Getting to that point happens day by day, and those who embrace that journey are to be admired."
I didnāt expect it to have day by day, in the quote. I donāt think I am embracing the journey. That seems to b e an awful lot of ask of ourselves. Maybe I need to try harder. Or maybe what I do see is Jeb embracing the journey.
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The cycling between periods of stability (life} and periods of psychosis {death} is what I donāt know how Iām going to be able to deal with in the long run. Itās just so painful to re-experience the ādeathā. I canāt see myself ever āembracingā this, and I canāt imagine my son embracing it either. I hope we can both someday feel some peace.
Right now, I am once again grieving a death.
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The ādeathā part is not embraceable. But we love our family members every moment.
I like this idea as a framework for thinking about sz: Radical Acceptance | Psychology Today
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It kind of helps me to acknowledge that at least heās alive when things are bad, and as long as heās alive thereās hope heāll get better.
And, Iāve also resigned myself that if something happens and heās no longer alive, at least he will be at peace and no longer suffering. My thoughts about religion are fluid, so I rarely factor in an afterlife, or that he will be in a better place, just that he will no longer be dealing with what he has to deal with now.
I try to find a middle ground where I can accept things to some degree, whether weāre in a good or bad cycle, without giving up on getting him help. Itās way easier when things are good, or at least mediocre, than when weāre in crisis mode.
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Day-by-Day,
Your sign on really says it all doesnāt it? We try not to worry about next week or next year, we just try to get through today.
I was reading one of Jojo Moyesā books yesterday. Her book, āSilver Bayā deals with the loss of a child. I copied this down from her book.
āThere is nothing redemptive about the loss of a child, no lessons of value it can teach you. It is too big, too overwhelming, too black to articulate. It is a bleak overwhelming physical pain, shocking in its intensity and every time you think you might have moved forward an inch it swells back, like a tidal waved to drown you again.ā
Yes, we do cycle between life and death phases with our children with mental illness. Since we canāt prevent these cycles, we need to make sure we take care of ourselves and feel good times and if not happiness, at least lighter moment, in our lives whenever we can.
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āWhen you push away or attempt to avoid feelings of sadness and pain, you also diminish your ability to feel joyā.
That sentence is from the article Hereandhere posted. I think this is why its okay for us to feel the pain when it occurs. I also think its important to visit this discussion forum and post the happy, fun events in our lives. Just like real life support groups, people tend to show up when they are in pain. We canāt let that stop us from posting the happy stuff, in fact it means we need to post the happy stuff for everyoneās sake - as a reminder that there will be another life cycle coming up, even though we probably worry that each good cycle is the last good cycle.
I always hope that people temporarily missing from real life support groups are experiencing good times in their lives.
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Hope, this is the best description of it I have ever seen of what we go through! I totally agree though, we need to find the bright spots, to celebrate the small steps forward, or we get lost in that blackness. Almost impossible to do when things are at their worst, I know. God do I know!
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You are so right Leiann - we are doing the almost impossible. Only we can understand what it means to do the near impossible one day and sometimes have to get up to do it again the very next day and again the next sometimes.
She is a good writer, not so simple the readings donāt distract me when I need to be distracted and not difficult on the days when dealing with Jeb makes nearly everything difficult.
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@hope, we are all warriorās! We are doing what is impossible for some. We are carrying a burden that many could not, and donāt. Whether they live with us or not. Where I work, there is a lot of death to be dealt with and I realized early on that we are grieving the loss of our loved oneās, though they are still with us. We grieve the loss of their future as we, and they, saw it. We grieve the personality that used to be, but what I didnāt know back then was that someday I would rejoice when I saw parts of that personality get through the mental distress that they are in. When out of the blue, the boy who used to love to hug and then this disease caused him to hate being touched, and then one day I come home from work and he hugs me! Not the same kind of hug but, I cried for an hour after because it was the best thing that had happened in 2 years. That despair still pops itās ugly head up almost weekly, when I least expect it, and then I try to concentrate on all the good that have happened. In fact it did again today. My sister and her husband drove 4 hours to surprise me and do a bunch of yard work for me. I was so happy and grateful, but then they left this morning and this overwhelming loneliness and despair hit like a ton of bricks. I have been forced to be isolated and do this all on my own and for 24 hours, I was not alone anymore. No wonder I felt so down, itās back to my son and I again. So now I am on the hunt for the next promising sign that will bring me back up. I will find it 
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I think itās true that the grief for our children never loses any intensity, no matter how many years have passed since their illness started. Time doesnāt help, we just learn over time how to live with the pain.
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Iām just like you. I think all of us parents are grieving for our mentally ill children. We have enduring sadness. There is no cure or treatment. Just learning to cope with it in our own ways and forums and groups are helpful, too.
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Hey terrific Mom,
Thank you for sharing your love story; I agree about the grief. Here are some things that have helped me this week:
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I schedule a time to worry and be sad (typically in the evening for 30 minutes and then it doesnāt even last 30 minutes). So I tell myself youāve got a time later today to deal with that so itās not continual. I read it somewhere and it works for me.
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Iām not going to accept status quo. I donāt have illusions that our son will have the same future. My goal for him now is peace. So our dog just died so Iām offering him to get a therapy dog if heāll step up and go through the process.
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Getting him off smoking and marijuana only worked by cutting off all money and threatening to leave my husband of 40 years. It was hell but it worked. We can help with his health so this was good. Heās not a born-again recovered addict but heās doing it his way and I admire him for it.
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My son does not talk with me much. Iām working on that by now my hubby and he go out to dinner several times per week which is hard for me to bow out but itās more important for him to get some fun in his life first and then weāll integrate the rest of us back in over time.
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Inviting family members to the house for dinner. Thatās helped because heās now connected to a few more older family members who we trust completely. Not all family is smart about supporting him so theyāre not invited.
Iāve cried and will continue to cry several times a week. But I am determined to not give up ever. I wish the same for each of you. If we just kept him isolated it would be easier for all of us but thatās not a life that he deserves.
You each know whatās right for you; wishing you strength in your day to find a moment of peace and connection with your hero tackling this horrible disease.
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i don t think anyone who hasn t been there understands the sadness and despair you feel when your beautiful,such loved child gets this diagnosis.It is learning about a whole new life that you didn t want thrown on your family. I think all the time about the hopes and dreams i had for my brilliant young son and then this sz came along and took all the old plans away. i get so sad seeing him stay home most days and sit in his room, He says he is getting more afraid of social interaction and i feel such pressure to to try to keep him even slightly engaged in some survival activities such as grocery shopping. i usually have to remind him to shower after several days.Sometimes he will laugh at a joke I make and I see hope.It has been 2 1/2years for us and i know it will get easier to get used to the new normal.i am his primarycaregiver and the worry over his future is always present.
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For me Iāve found that it does not get easier. Just when I thought all was better my daughter has another terrible and heartbreaking episode.
Irene, I pray that research will find a much better way to treat our children.
I hope your son has a good outcome. Hang in there you will discover new ways of dealing with the new life but itās a very tough road.
For my daughter itās gotten much worse and I can no longer care for her. After nearly 20 years of advocating and helping my daughter Itās all just too much for me. My focus now is raising her two small children.
Good luck to you - hang in there - find a hobby, take long walks and absolutely take time to take care of yourself.
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Iāve never told my daughter that I hate her because I donāt but I do hate the disease and whatās its done to my baby girl.
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Of course I donāt hate him but God I canāt stand the person he has become ā¦Iām constantly worried constantly ā¦
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Thanks for your reply Molly, after all Iāve read about this horrific disease I hope for the best, but expect that things are never going to be my pre illness view of normal. I guess you just have to accept it, make the best of it, and look for small accomplishments. I still feel so sad that he was struck down with this illness, but try not to talk about it constantly to family and friends as I did in the beginning. My heart goes out to you and your family. You are so courageous.
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Hi @rcm1972. I understand completely what you mean. This illness can completely change personalities that are tough to love.
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Yes, my son is my hero! He has always been my special little boy who everybody loved, so charming, so sweet. And he still is, even though heās 29 years old, my sweet boy. He is my first born. My other adult child is a daughter, so I have one of each 
I donāt know how itās possible, but I love my son more than ever!! I have such feeling for him. Iām sad still. Always will be. The sadness has not decreased in its intensity and it never will, but Iām not crying EVERY day, sometimes for two or three days non-stop, except for sleeping. I cry a lot still, but just not every day. Iāve also learned somehow to find times when itās safe to cry and usually, but not always, I can stop crying if someone is approaching, like my fiancĆ© might catch me and it upsets him so much that I really try to hide it from him. Itās not that he gets mad at me. He understands Iām sad. He just canāt help. Heās also learned that when I talk about my son to him, or Iām educating him about schizophrenia, heās learned to just listen, without trying to give advice. I donāt need any more advice! Just hugs. And validation of my feelings. We mothers are so uniquely tied to our children. We canāt help ourselves. Itās just the way it is and I believe a diagnosis of schizophrenia has to be the saddest of all. Having this forum and my FB groups, these women (theyāre almost all mothers) are my friends now.
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