27-06-2019 03:40 PM
This is my first post on here and I’m not sure if I’m even classed as a carer but my husband and partner of nearly 15 years has Schizoaffective disorder and I’m really burnt out. He’s 37 and I’m 38 and we have a two year old son. I’m struggling a lot with his negative symptoms and am too drained to keep going on with him or to even care anymore. He and sees his psychiatrist every few months. He has no positive symptoms but the negative are exhausting me. He barely speaks and when he does it’s the same automated conversation. He isolated himself from me. He stares into space. He ignores most of my texts. He can’t follow social cues. He also struggles managing our two year olds tantrums and he is a very strong willed energetic little boy. I feel like being a husband and father is too much for him. He is a writer and works from home so he can set his own hours. I guess I just don’t know how much longer I can take living in this silent and strange world and am hoping anyone out there can help me or say they understand? “
28-06-2019 08:09 AM - edited 28-06-2019 08:49 AM
Oh yes, it is rough going when our loved ones isolate themselves.
Toddlers can be challenging for anyone but add in MI ... yikes. I often feel sorry for parents when their young ones throw tantrums in the supermarket, I think they feel helpless too. Does hubby leave you to deal with the tantrums? Do you think hr behaves wrongly in response to them?
Does hubby help out around the house with cleaning, cooking etc?
There are losses that come with MI (and indeed other chronic illnesses) and it is important that we recognise them and grieve them.
So very important that we have our own supports in place, so that we can live well in spite of these.
A lot of us carers have our own counselors that we see to help us cope with the challenges of living with someone with MI, having self care necessary but often difficult for time poor mums of youngsters.
The change in dynamics that parenting brings to a relationship may also be accentuated with MI. If he otherwise treats you right, do you think hubby would be amenable to some solo or couples /parenting counseling (important to remain positive and not let it be a winge fest on what he doesn't do).
What do you enjoy doing in relation to hobbies etc? Please do feel free to look around the forums and participate in discussions. Whilst our circumstances and responses are different, we encounter a lot of similar feelings.
28-06-2019 01:13 PM
Welcome to the forums @Bindy17. You are most definitely considered a carer and it sounds like you are really struggling and suffering burn out. As @Darcy has mentioned, many carers do have their own support networks to deal with their mental health, as well as making sure you have time for yourself to engage in activities that you enjoy. What things do you like to do?
02-07-2019 12:15 PM
Hi @Bindy17, yes I do understand as my husband is the same. We also have four children, two of whom have schizophrenia as well as my husband. It really is lonely, until you accept the limitations of marriage to someone with a serious mental illness. Once you make allowances and have in place support systems, it helps you to find the ground upon which you can still enjoy a relationship with your husband. My husband and I have been married now for 37 years and although I love him differently from when we were teenagers, I do really love him. I am so proud of him. He is the bravest person I know. I accept the limitations of our life and try to make occasions out of the simple routine things. Just showing that you understand but are going to be firm can make such a difference. Good luck with it, I know it's a tough challenge.
05-07-2019 12:46 AM
Hi @Bindy17 and welcome to the forums.
I am in a somewhat similar position in that my husband has isolated himself into an eating disordered daily regimen that takes up most of the day. It has caused a completely different presentation of his personality than the way we knew him before this happened, so it’s likely driven by a personality disorder, but rather than understanding that he is unwell, he thinks he is living a superior lifestyle.
As with @Darcy and @perseverer , I have come to accept that my relationship with him can’t be what it was before. It took me a while to understand that I have become his carer, because that is what it is to live with a spouse or partner with mi, and I believe it will be easier when / if he is ever diagnosed because that would validate and clarify what has happened ..... but as you know yourself, it isn’t any kind of magical solution.
As @Darcy and @perseverer have said, the relationships are changed, but can still be “doable” with their own moments of joy. That seems to come with two things - accepting the limitations, and finding your own life within this new life.
What does that look like ?
For me it meant no longer trying to rely on my marriage for emotional fulfilment. I believe some of that can return with a diagnosis as we can then start to row together again. At the moment I have had to accept rowing my own boat by leaning on friends and other family members for support, engaging a counsellor to help me deal with my new reality, taking on studies to give me a new focus outside the relationship and the home, and doing things far more independently, by myself or with our kids, and letting him be the satellite that his condition dictates to him to be. I find companionship elsewhere now.
Within this new status quo we can still have fsmily occasions, still travel together, still share and maintain a household, but we need to make room for the condition that lives with us. It felt like enabling at first, but while we can’t do anything about it, and the most telling symptoms are hidden, counselling has helped me learn how to carry on regardless.
Sometimes medications can suppress socialisation and personality. Can you suggest attending some of the time in your husbanf’s next psych appointment to broach a conversation about that, and see whether medication adjustments might help too ?
Above all else, it’s not selfish you put your needs and the needs of your son first. To survive as a carer, you need to be a carer to yourself as well. You are just as important as anyone else in the family and your needs matter too. Increase your self-care in any way to can. For me it meant getting my problem nails and hair seen to more often, and when I am feeling tense, I get a neck and shoulder massage. Would having perhaps fortnightly cleaning help with the house make a difference for you ? Think about what else can be shared out ....
Here and listening, and hoping some of this is helpful to you.
05-07-2019 09:45 AM
Thank you faith and hope for your answer. Everyone has been helpful but your post really helped to cement what I’ve been trying to achieve. I have never had a problem accepting the diagnosis. What I have had trouble with is accepting limitations as a husband. I’ve been pressuring the marriage to be everything a ‘normal ‘ marriage is but it isn’t normal. I’ve been trying to get romance and support and all the things your supposed to need from a marriage when it’s not at all realistic. I need to be like you and search elsewhere for that kind of support. Sometimes he can be there but mostly not. His new antidepressants have perked him up a little bit so that takes the edge off. I am going back to my psychologist. I just wish I had a close friend who understood but none of them get it at all! I’m not even going to bother. Thank you for your support
05-07-2019 10:01 AM
It can be intensely lonely @Bindy17 . You’re sort of not married in the same sense any more, but also definitely not single, so it become about being in the new “twilight” state and exploring how to make that work, and find some joy in it, although that can sound impossible at first.
Finding the forums, for me, wasike a green leaf in drought. People here hear you, and understand. You find parallel experiences, and there exists here the strong sense that you are not alone. You can even find company here in the middle of the night sometimes, when sleep is difficult for any reason, and just a few posted words over a hot drink in the wee hours can make a real difference.
@greenpea and @outlander are two of our night owls who don’t mind being tagged any time (@ symbol does that - sends them a notification from you) and me too. There are time differences between the states that means it can be earlier or later somewhere else in this big country.
Its like a new, more immediate take on pen-pals 😏
05-07-2019 10:50 AM
@Faith-and-Hope Hey Faith-and-Hope good to see you back xxx thank you for introducing me to @Bindy17 , Hi Bindy17 ! I am a night owl am often up from 1.30am onwards eastern states time zone and love a chat so please tag me . I also have schizoaffective disorder. Looking forward to talking with you love peax
14-07-2019 05:31 PM
Hey @Bindy17, how are you doing this week? Sending hugs and warm thoughts.
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