Family and Caregiver Schizophrenia Discussion Forum

Being an Advocate + Life Goals


#1

As a caregiver for my child, I’m at a cross road. My daughter was admitted on 12/15 for a psychotic episode, and released on 12/23. She’s not exactly stable right now but not in full-blown crisis either. I’ve been working on my AA degree in Paralegal studies and have six months remaining. My question is - do I continue working on my degree or do I hold off indefinitely to allow this situation to evolve? It’s all still very new and unknown. How do you know when a situation is stable enough when your child is dealing with mental illness?

The reason it’s a dilemma is multi-fold. Number one, I’ve already taken two semesters off, so if I don’t go back, I have to withdraw from the program which opens me up for degree program changes (doesn’t guarantee my current program requirements in the future which could lead to additional courses being needed to get the same degree). It also causes my student loans to come out of deferment. And finally, I’m only 6 courses away, it’s an online program that meets twice a week for two hours.

I’m conflicted because I want to be there for my daughter but I really want to finish this degree. My career is stable and doesn’t require for me to have the degree to advance but I’ve spent over $20K in loans to get to this point and it would be a waste not to finish. In addition, I don’t know if I may need the degree in the future for other job opportunities if I should reach a ceiling in my current position.

I’m concerned that if Libby goes into crisis again, the mental and emotional strain will be too much to bear and I’ll be unable to succeed in my classes. The classes are structured such that there are no excuses (no late work, no exceptions) and no leniency, the requirements must be met to pass the class.

Any ideas? I welcome any and all suggestions and thoughts. What would you do if you were in the situation?


#2

Hi Charity. I guess the questions you have to answer for yourself are:
How mentally strong are you now?
Are you stronger now than you were 2 months ago, 6 months ago, 2 years ago?
Have you begun to realize you can’t fix this, but you can only manage it?

I think many, if not all of us, go through a period of time where we spiral down with grief over what has happened to our loved ones. We also spiral down due to the trauma it has caused us. Some of us will stay down for a very long time or forever. Others will somehow start to heal and work their way back up. Some will learn how to compartmentalize their grief and trauma, and get on with life.

Personally, as hard as it is to admit it, I now know I can’t fix this. Also, enough time has passed to allow me to really understand what the phrase “new normal” means. This all doesn’t mean I’m not still grieving. I’ll probably do that until I die. But, when the next bomb drops, I think I will be better able to not let it shatter me again.

If you feel strong enough, don’t stop what you’re doing. But, if you’re not there yet, don’t beat yourself up for quitting. This is not easy stuff we’re dealing with.


#3

I would go for the course see what happens. If you have to drop it then cross the bridge at that time. I would say to keep your self a priority as well - take care of the caretaker by fulfilling your dreams. I take rescue remedy to keep the stress at bay. It’s a flower tincture you can get at Whole Foods, Vitamin Cottage and even mainstream grocery stores like King Soopers. Most Moms here in Boulder keep some in thier purse. Good luck with your studies if you choose to go that route.


#4

Those are all really relevant questions. I have a hard time judging my mental strength right now. In some ways, I feel I have tremendous mental strength because my life experiences have been such as to give me that. I’ve endured so much abuse, trauma, and hardship, I feel like I’m as strong as a person can reasonably be. In terms of emotional intelligence, I think I’m well equipped. That said, I know there are others out there who have endured worse.

But on the other hand, I feel weaker because it’s my little girl. I’m vulnerable when it comes to her, in ways nothing else can do. If kryptonite were real, she might be that for me in some ways. I have faced so much this world has thrown at me, but the last three years have affected me in unexpected ways and quite frankly, the last two weeks have brought me internally to my knees in a way I have never experienced. This is a level of despair and grief I have never known, despite everything I’ve endured. And when I talk about being strong and enduring, I will give some examples. I endured 15 years of abuse and neglect from my parents, abandonment by my mother at 10, and sexual molestation by my father for four years. I went into the foster care system at 15, and then a group home, then the state returned custody to my father at 17. He kicked me out at 18, which led to off and on homelessness for more than a decade. I was raped at 14, date raped (and almost died) at 21, was kidnapped and held captive and raped for two weeks at 25, then stalked by that psychopath for more than a year. A car accident almost killed me at 18.

All of that is NOTHING compared to this. I have realized there is nothing in life that can equip you for this. And the resources are astonishingly, depressingly small compared to the situation. I have cried every single day, at some point in the day, for two weeks because I now understand what my daughter is dealing with. I look at my history and laugh at it. I thought I’d seen all the horrors of the world. I was wrong. This is a daily kind of torment and while I have a lot of coping skills, I’m not sure how you cope with THIS every day. While I’ve been coping with it for years and have been functional up until two weeks ago, somehow the KNOWING has caused an unraveling I can’t seem to explain. When I was ignorant of it all, I proceeded through life like everything was okay and functioned well. Now, I feel a bit like I’m going through the motions.

You know, most of the time in life, you have a crisis and there’s a predictable cycle. There’s a beginning, middle, and end. But with this, it’s almost constant - a daily pressure. And it’s unpredictable to boot - if we’re not in an active crisis, we’re waiting for one. The longer the period of peace, the more nervous we become.

I do realize I can’t fix it - that understanding came pretty quickly when we realized schizophrenia matched her symptoms and has helped us tackle the all-important questions of how to manage it for her and WITH her as well as how to give her every possible tool for success. I’ve tackled a lot of the potential negatives (i.e. the possibility of suicide, homelessness, loss of insight etc) in the last two weeks as best as one can when facing the possibility of losing a child too soon. We have an action plan if the worst should happen (i.e. I doubled her life insurance and we have a cash fund for a hotel room for a few days).

We are still actively trying to address issues each day, and the issues we’re tackling are really big and foundational, primarily: what to do about her educational environment? How to recognize and react to a mental health crisis and to what extent? How do we recognize and manage symptoms each day? What do we need to do in terms of long-term planning? What are some of her biggest triggers and how to minimize them? How do we get doctors to actually diagnose her properly? What is her highest level of function and how do we maintain it? We don’t have a baseline yet for where she is cognitively because we’re still working to get symptoms under control. The school is going to do some testing to find out more there.

So I guess I’m still grieving, processing, and working through it all but I haven’t given up or laid down on it. I still have hope, although some days are better than others with that. It’s a really crazy roller coaster right now. Is it likely to be able to deeply grieve everyday but be normal in everyday life? Those two things seem to be incongruent to each other. I go to work and for a while, I can let go of these issues. Work really helps although it has its own issues too with regards to stress and balancing everything. So I guess I can compartmentalize okay but some days are crushingly hard. Some days I go to bed wondering how I will find the strength to do it all over again the next day, and somehow I do. Is that mental strength? Or just bullheaded determination? Maybe it’s both. It’s just not in me to quit but I do fear a mental breakdown as a possibility. I’ve never been there before so I don’t know what that would look like, but if anyone were a candidate for it, I imagine I would be. How do you know what your breaking point is? How do you recognize it’s coming so you can stave it off?

The pragmatic part of me says life must go on. The emotional side of me is what I’m struggling with. I’m going to seek a psychiatrist to help with a mood medication and an antidepressant because I’m very afraid that one day I will lose my grip on my control without it. I have PTSD and anxiety myself and I’ve been able to cope without medication until this point, but two days ago I was having some very scary thoughts and urges as a result of PMS. It was a new low I’ve never experienced and that made me realize that I need some help in that area. Maybe a lot of help. So maybe the medication will give me some additional ability to cope with the daily stresses enough to succeed. Classes start Jan 23.

I guess worst case scenario would be to let the school know, see if there’s a way they can accommodate it (after all they have a financial incentive to do so), try it, and if I can’t do it, I’ll withdraw at that point. Maybe they can make some kind of accommodation for me. Is there a special ed category for adults without a special education classification? lol But ultimately it can’t hurt to try right?

There’s a certain amount of guilt that I would be less available to her because of the additional responsibilities involved with schooling. Is that realistic? I already work full time. But she doesn’t typically demand a lot of time from me herself. Usually, she just likes to be near me and I can accommodate that because of online classes. What I’m afraid of is if there’s a full-blown crisis that leads to me being unable to attend class or having to leave in the middle of class or causing me to be unable to do assignments for a brief or longer period of time.

So is the guilt justified or am I being unfair to myself? What if I miss something important for her because I’m too distracted by school? I feel a certain responsibility to be alert to her in ways others wouldn’t be when I’m around her. It’s a kind of hyper-awareness almost or hypervigilance, to help recognize an issue before it gets out of hand. I might not have quite as much of that feeling if she were an adult but because she’s a child, I feel a strong responsibility to be her voice right now.


#5

There is no greater pain than the loss of a child. We’ve all heard this. Our children have not died, but we have lost them to this horrible thief of an illness. Nothing compares.

I chose the user name “Day-by-Day” because that’s how decisions and plans are made.

I think we just have to remember to take care of ourselves, and not feel guilt for something we didn’t cause and we cannot fix. Keep your finger on her pulse, but keep your life going. I know that sounds easier said than done. I struggle with it too.


#6

It sounds like you and your daughter are very close and have a good relationship. Talk to her and let her know some of your concerns then ask that she lets you know straight away of any changes to her health; symptoms returning, worsening, changing, etc. You may be able to address things before they reach crisis point. In time you will recognize triggers and changes (you probably already do).
You are so close to finishing your course and it would be a shame to stop now. This rotten illness takes enough from all our lives, and I don’t mean at all to say you will resent your daughter, but the losses stack up and will impact your own mental health. You sound like you’d be a wonderful advocate and these are sorely needed.
My mother studied post grad at night while supporting a family and being a wonderful wife to my father who had many health problems. She inspired me and made me realise what people are capable of. Don’t underestimate the inspiration you are to your daughter.
The decision, of course, is yours, but hopefully this message helps a little. I wonder though, if I can ask, what support you have? You need to care for yourself to be able to care for your girl and you’ve been through an enormous amount of hurt and trauma. You may feel overwhelmed and weak at the moment, but you strike me as an incredibly strong and resilient woman; qualities you’ll want to nurture to help you along this road.


#7

@Sanatorium23 thank you so much for your response! I love your idea to talk with her and will do that at the first opportunity. I also agree it would be a shame to stop now. Thank you for sharing about your mother, that’s given me hope. I am always feeling torn between my career and home and it’s a little worse now that we understand her symptoms better. Your message absolutely helps! I have always wanted to inspire my entire family to achieve and I’m also a very driven person by nature. Having these goals gives me a path to follow in life, which helps me to stay stable in life.

I don’t probably have the biggest support network but what I have is great. I have my husband, my son, and a small group of really amazing friends. My colleagues at work are supportive in their own way (although only two of them know really the crisis we’ve been in lately. Our HR director had a grandfather with schizophrenia and have a mother with dementia and has a psychology degree so I feel like he “gets” it.) And I have this forum, which has quite literally helped the most of all with support, encouragement, education, and just knowing I’m not crazy. It’s enough for the time being, I think. I’m working on getting some medical support in place in the way of some medications to help with depression and anxiety as well as therapy for myself and the family. Due to the holidays, we’ve had to endure but it’s a priority after the new year. It’s extremely hard for me to let others in because of the trauma I’ve suffered over so many years. Trust does not come easily to me.

Your message has given me strength and hope - there’s no greater gift one can give to another, thank you! <3