Here is a different perspective. When I get more depressed and down, I know I am neglecting my self care. I am not eating right, sleeping or finding time for something “fun”. It may be a long hot shower or time to read a magazine. I do that and focus on me for a bit and that helps. What really helps is when I can connect with others - even here- to offer encouragement and any wisdom I may have gained over the years. Years ago before my sz son was born, I lost a daughter to a heart defect- when I gave to others by volunteering I saw value in my life and was able to go on. Take care of you and then you will have energy to take care of others. Hugs to you!
Hi there. I have a couple thoughts on this subject. In the 30 years since my twin was diagnosed- can tell you for me personally- happiness has been elusive. Anyone who has had a loved one touched by this illness has to on some level- contemplate the unfairness of life- in their own life. The first thing I had to do- was accept my limitations. To accept the things I couldn’t change about my twin’s illness or how his disease manifested. I couldn’t view my brother’s setbacks as personal failures. -When my brother took himself off his medication- lashed out verbally or spent all of his money on marijuana. I took so much of my own grief and pain of my family situation towards channeling it into people who are going through what I went through when my brother was first diagnosed. Happiness IS a very important question for each person to answer. Especially for caregivers. Many people in this forum are people whose loved ones have only recently been diagnosed with sz. People who are transfixed on the well-being of their mentally ill family member. I get it. I remember feeling guilty and ashamed at thoughts of wanting to occasionally do something selfish back when my brother was first diagnosed. It is 100% necessary to do things for yourself to keep your own sanity intact. It’s easy for a family member/partner to isolate as they become engrossed in caring for their mentally ill loved one. There is a stigma of shame that surrounds this illness. Not only for how schizophrenia is viewed in society- but the extremely complex emotions for anyone involved with this illness. How do you explain what life as a schizophrenic family member is like in every day social situations? You don’t. –Or I didn’t. I couldn’t talk about my personal struggles as my brothers illness spiraled out of control. I was devastated. About feeling out of control myself. All the “why me” feelings. The resentments I had for feeling cornered into sacrificing my time and energy for someone that was cruel and self-centered. Someone who never showed a degree of gratitude for my efforts. I’ve talked about this several times on this board but we- just like our loved one’s afflicted with schizophrenia deserve happiness, love and peace. We deserve to live our lives while not sacrificing personal safety or security. We deserve kindness, compassion and maturity in the company we keep. We aren’t branded by this illness- nor are we defined by it.
@fefifofum69, I understand completely what you’re saying as far as caregivers deserving to be happy. But for me, happiness is defined by when my son is having a quiet, uneventful, peaceful day, with no outbursts or issues. I know it sounds like it’s not much to ask for but we all on this forum know if they have a peaceful day, it’s a successful day. If he ever engaged in long term conversation with me, or actually took an interest in something, or even smiled occasionally, well then I’d be beyond happy, I’d be ecstatic!
Some may say I’m letting my son run my life, but the truth is I’m right where I want to be, need to be. I have found that I cannot be “good”, unless he is “good”.
So yes, it is extremely isolating, but realistically I think a lot of others who do not have sz are isolated as well, for different reasons.
I’ve always liked this phrase:
BE KIND TO EVERYONE YOU MEET. YOU DONT KNOW WHAT BATTLES THEY ARE DEALING WITH
I truly feel only the strong and resilient can survive in the world we now live in today. I don’t know if people have always been so selfish and sometimes cruel, or is it that we are just seeing/realizing it now because we are being forced to fight battles that we never thought we would?
In some ways this situation has made me more insightful and perceptive, and yes, more empathetic, especially towards the mentally ill. I’m not sure if My thought process would be where it is today had it not been for this illness. Perhaps alittle smarter? Alittle deeper, perhaps?
My smart schizophrenic son says, “mom, we are all sinners. The problem is some don’t know that they are, and they think they are actually the good ones who never sin or are better than others”. How true!
I’m so glad to hear this. Isn’t it wonderful to see your child feel better, almost before your eyes? Mine is med-accepting, which helps a great deal. I hope your daughter continues to do well. Peace to all of us this holiday season.
Yes, it is sooo wonderful to see her feel better. I can only hope she will be med compliant now. I am glad your child is med-accepting, yes, it helps a great deal.
Peace to all of us.
my son has a dog and this responsibility and the love of this friend have been great for him!!
@violinist, how wonderful!! Yes I’ve always wanted to get my son either a cat or a dog, he LOVES animals (well, he used to I should say), but he still says no. I think he thinks it would be too much responsibility, he does not live with me. But he lives very close to me and I would gladly help him! I miss having a dog too, but I work so much, it would be more ideal for his situation. He is home all day and is very much alone (I’m crying as I write this).
That is so wonderful for your son!
Don’t give up asking if he would like a dog as they seem to change their mind often , definitely on my list when the time is right .
Does.your daughter know or u.dwrstand the meds made her feel better? Or does she suffer from anosignosoia?
Up until now, she has not admitted that the meds made her feel any better. She always says she hated the side effects. She definitely had anosognosia.
This time, she seems to have insight at least to the degree that she says this medicine doesn’t hurt her, but helps her. I’ve tried to talk to her about the medicine and its effect twice since she’s been home, to see what she thinks it’s done for her, but she hasn’t been willing to talk about it. We’ve had two arguments over meds, so I backed off asking.
In the book, “I’m not Sick, I Don’t Need Help” one example of getting someone to continue meds was that it helped them to work. She is looking for a job for the first time in 3/4s of a year, and had a sobbing cry about how she has been so dependent on me, so I may just ask her if the meds make her feel she can work, if she gives me that chance.
I feel for and all of us. I’m 66 and would give my life for my son. No one diserves to live with this illness.
@Margi, I agree whole heartedly. I don’t understand those who say you need to live your own life. Well my son is my life. I’ll be honest, it’s hard for me to understand that concept. Not sure that I’d know how to do that nor would I want to.
This illness is hell on everyone involved.
They need every one of our around the clock support
My son has a tv but barely watching it. For the last 6 months thinks it has evil intentions and talks yo him. His med compliant but really isolating except for playing slot machines when nobody there. Now he’s become addictive that. He is schizoaffective. Diagnosed 17 years ago. Unfortunately he’s getting worse.
@Butterfly, same with my son. Until recently he didn’t want the tv. He stayed away from it for about a year, I did just recently get him another one, but he’s very careful about what he watches and how much he watches. So weird, never thought he would view the tv as something evil or something that would hurt him.
He is Med compliant, but also isolates way too much. It really kills me to see him alone so much.
I guess I should be be grateful he’s not in psychosis, and is taking his meds, and staying out of the hospital.
We, my son and my mom with AD, are on the unmedicated road in the journey of brain disorders. My son refuses meds and I stopped them for my mom when I noticed her quality of life seemed worse on the AD meds.
But I am not anti-medicine or anti physician. It is the quality of life that is primary and how we get there, well it can be debated all day long. I think it is best to find a doctor you can trust. If you find something that makes life less miserable and aids in becoming a productive content person, I am all for it.
My son spent years trying to find the right cocktail and ended up psychotic and suicidal. He now refuses meds. We are 15 years into the sz journey and 2 years into the Alzheimer journey. We have learned to adapt. We will never have a Rockefeller painting life. We do appreciate the good moments, cry a bit during the bad moments. Rely on our faith a lot. And we are happy. Not blissfully so, but happy nonetheless.
We worry about isolating, but really if they are content we should not worry. Recently my son explained some of what goes through his head when he is out in public. They know when they are failing to meet our expectations and that adds another layer of stress. But when we begin to understand just how tough everyday things are for them we can begin to stop worrying about isolation.
@thereisalwayshope, as a mother, you know how it is. We want them to have friends, or some type of life. I just hope that they really truly are content in their isolation, that would take a huge load off of my shoulders and I would not worry as much. Thank you for putting it into a different perspective.
Yes, I could have said those words myself. I am trying to make life more pleasant and productive. Quality of life. I am all for raising quality.
Honestly, I am not anti or pro medicine in general. Medicines are individual choices and necessities. Back when I was oblivious to mental illness, and specifically sz, I was actually anti medication for MI. That changed when my daughter’s illness hit. But specific to my life and my daughter’s life: the current medicine she is on has hugely, hugely improved quality of life for both of us.
I am sorry that medicines have not worked for your family, and even worsened things.
I am very glad that you have reached a happy level of life since. It must have been very difficult with these brain illnesses affecting two of your loved ones.
I hope life for you continues to improve and be happy.
I don’t think I can make it through this any more. I just sent him another 200.00 two days later he called and wants me to send him more money because the home invasions the peaple are coming in every night when he’s sleeping. I told him that I would not be sending him anymore money he gets his disability money of 1,000.00 every month and I pay for everthing that’s related to the house. He got really angry called me all kinds of terrible names. Said I failed as a mother in profiding support for my child. Sorry for the spelling. I just can’t stop shaking worring something bad is going to happen. I have been running to the bank almost everyday sending him money. He telling me that he’s so hungry and is starving. Once I sent him 250.00 the next day he said someone came in and poisoned the food so he threw it out.
So sorry @Margi. It is difficult to set the limits when a loved one doesn’t really have the capacity to understand, but you must manage things for both of you right now.
I don’t recall if you live close to your son or not. The most I would do in this situation is provide specific food items.
Continue to express your love and how sorry you are that he is dealing with this circumstance and offer what you can without putting yourself into a bad situation. If you haven’t tried it yet, you might want to consider getting some public service to do a wellness check. That of course depends on how you think he would respond to such interaction.
Waiting for that other shoe to drop is always so difficult! Try doing something that is comforting for yourself, and hug yourself and know that others walk this path with you.