Daughter doing very well, but suddenly I’ve lost all patience with the level of attention and support she still requires. It could be because, after completely focusing all my energy on her for eight years, I thought i could focus on my own needs, passions, training, and starting up a business. I work out of my home and she lives with us. The interruptions are constant, even though i have made my boundaries clear. Her meltdowns anger me. I wasn’t like this before. Everything was about getting her better. I’m feeling jealous about this being “my time.” Shes not in crisis, but the nature of the illness requires a lot of support. But, i know from experience that i could be of more help to her. Have any of you felt this kind of thing before?
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Of course I have felt that irritation, almost on a daily basis. I think it is part of the grief process at losing forever to schizophrenia the independent adult that my daughter was before she got ill. And in addition, I sometimes still get surprised at her regular criticism of me for seemingly insignificant things. My life would have been totally different now if she hadn’t gotten ill. However, I chose to help her get better and to help her stay better at my own cost. That includes having her live with me as otherwise, she wouldn’t be able to survive.
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Yes, I can relate, and there is valid reason to be beyond irritated by this disease. I find myself angry – then realize it’s not so much at my son, but at the demands this disease places on caregivers, myself included. There’s no reason to deny our emotions – they are real! Perhaps focusing on some self care – refilling your cup – may help?
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Try to get a caretaker to come and help both of you with this.
even once a week, or three times a week, I have given up 7 years so
far…but would need a caretaker to leave more than a few days, as the house becomes a mess, my son wont take the meds,
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Thank you, everyone. My daughter was never an independent adult. The psychosis started at 14. I guess what im seeing in myself is that all during the real crisis years, i was able to draw upon all kinds of ways to calm her or coach her through whatever was happening. Now, when the far more rare outbursts happen, or she tells me she wants to harm herself ir someone else, im angry and i suggest that she call her therapist - or once just yelled at her. During one meltdown, i had her call her psychiatrist. He walked her through a process that i knew well. It just didnt even occur to me. All these years, i didnt take care of myself. Now, i am. I feel jealous of my time and energy and focus. I want it directed to my needs and desires. She’ll probably never be able to live alone. We push her to as much independence as possible. We’ll see.
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What you are feeling is important. NAMI’s Family to Family teaches us that the number one goal should be keeping everyone else’s life on track. I think of it as “containing the damage”. We have to prioritize our lives or it is an unhealthy for us mentally and physically.
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I have taken the NAMI course, but keeping everyone’s life on track is impossible. My son has been ill going on eight years, and though he is only 25, I am 71 (had him very late in life) and
would love to be able enjoy my older years before they are completely gone…but how…where? I am unable to move anywhere else because my ex (with whom our son lives around the corner) and I have agreed that we will continue to work as a unit vis a vis our son for as long as we live. My ex is almost 70 and would like to retire but is fearful of not bringing in any income except SS because we both need to continue to support our son. I get terribly despondent, sometimes for weeks at a time, but any resentment is long gone. I willingly brought this child into the world and feel a very strong moral and ethical obligation regarding motherhood for as long as I am needed and alive. I know a woman (long ago a good friend, but no longer) who early on abandoned her husband and two young sons, and she just doesn’t “get” the fallout from all that. What I have learned from many tragedies in my life (not just the present one) is that one must do one’s best, and of course always hope, but also at times try to accept “what is” with grace and not rage against it to no avail.
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I feel it’s completely understandable. And yes, I can relate. And, if it’s not because of being a care-giver, it can be a number of unexpected things in life, that derails our plans, our lives.
It totally makes sense to feel disappointment, sorrow, anger, etc. It’s loss, and grief is to be expected.
I think it’s important to allow yourself to feel it fully, which in my experience helps me use it as feedback information that something’s amiss. In my opinion, you’ve nailed it. You’ve neglected your own wants, needs, and passions. And that’s understandable, too. But now in particular that she’s doing very well, it’s a great time to make some changes. My advice though is to not over-correct or get out ahead of your skis, making too many or too big of changes at least to start. Rather, at first, regain some much needed balance and honor and celebrate any little thing that you change or do that gives you something for yourself. And, it’s important to be a care-giver to do that.
Heck, for me it can be as simple as taking time to listen to a favorite song, cook a favorite food, pick flowers for myself, etc. etc. Then, from a better mind-set you can make insightful choices if whether and how to act on other ideas that require more commitment and are manageable while still also care-giving.
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I know right? It’s the primary goal, doesn’t mean it’s possible. And like the rage and the grief, best not to get too caught up on the roads to nowhere.
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I think I needed this today, to see I am not the only one that feels the anger at, hey what about me. What about what I want, then feel guilty for even thinking that. And on certain days made to feel guilty. My daughter is great at manipulation and being over bearing and demanding. I am learning its okay to tell her NO! Even if there is fall out from this. She will get more agitated and in her head more (hard to explain) she will follow me everywhere till she gets what she wants and will not shut up. The car needed break work and no matter what I said she would not listen that I had an appointment and we could go riding around after it was fixed (not safe to drive) and she would not get it. Even stomping her feet, and following me everywhere. (I know I said that) .
Just a bad day, Made me angry and I cried which made me angrier. I have a hard time dealing with emotions my self. I absolutely hate arguing and that has gotten to be my life. SORRY everyone I just want to bitch to someone. I don’t really have anyone to talk to.
Some friends I talk to a little about stuff but they couldn’t handle the full extent. I am not trying to get sympathey just AAAHHHHHH! I love my daughter more that life itself. but some days, I just want to AAAHHH#$.
Then there are days that are fun and as perfect as they can get.
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I can certainly relate to being followed everywhere! Sometimes, I’m trying to give myself space to get centered again so that I can be present. Then she follows me, talking non-stop, repeating herself. I feel like I check out and that’s not how I want to be with her. Sometimes, I just leave my in-home office to move and think through something I’m working on. She’s there, talking. I love her passionately, but that doesn’t mean I don’t get angry. I really think that because she’s doing so well I am expecting too much and get angry when the symptoms reappear. I told myself there was room now for me to move forward - and there is - but I need to continue to be fully present for her and that’s hard. I’ve snapped at her so many times lately. Sometimes, it’s something she needs to hear. Sometimes, it’s unnecessarily harsh. I’m trying some self-compassion. I’m human. I’ve been her biggest supporter in her recovery. Right now, maybe I’m tired and looking down a road that has no end in sight. I know I’ll find my kindness and understanding again. I’ll return to realistic expectations. In the long run, this is a blip on the screen.
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I am so glad things for your daughter are getting better. And I hope you continue to work on the stuff you want also, it is important, I think. Its not selfish or bad to want to accomplish this for yourself. In the long run it will also be good for your family also. I am so glad you wrote back Thank you for spilling out also. Makes me fill not so alone.
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Yes, isn’t that the truth? I lost it last night, yelling at my husband over his lack of following the vet’s order regarding our dog (the dog got attacked while on a walk by a MUCH bigger dog). My daughter is doing well enough now 8 years into her illness that SHE tried to calm ME down out of my rage.
I am 68 now and still work part time from home to keep my family going despite severe illnesses for all of us in the last few years. I am jealous of my friends who are really retired and travel and play and don’t have to worry about money or helping ill relatives, but oh well… I have finally learned to attempt acceptance with grace. I am very lucky that my daughter is on a med that helps her have a pretty normal life now. @not_alone is right when she said “it can be as simple as taking time to listen to a favorite song, cook a favorite food, pick flowers for myself, etc”, please do the little things you can to give yourself some joy and help get you out of your despondent days.
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We always have to remember it’s the disorder that makes us suffer. I try to concentrate on the before love one.
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Thanks for this discussion. I can fully relate to this post and other experiences. I started to take care of myself only the last year. Trying to get away from home for 1 night at least once per month. I have my mom who stays with my daughter during these days, but she is getting older… so I understand that I would need another solution. Thanks for sharing any experiences how you take care of yourself… also idea of picking flowers or listening to a song is very nice idea.
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Wonderful that you have such a group working with families. Could you elaborate of what you mean with ‘containing the damage’?
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Sorry for delay in responding, bit of bad weather here.
Many of our family members are unable to stay on their previous life plans/relationship tracks, etc due to the effect scz had on their person.
For the rest of us, we have to make keeping our own lives on track as a priority. I see that as containing the damage.
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this is what I still have to figure out and negotiate with myself… that I am allowed to have my own plans and priorities…
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