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Deciding to become a caregiver?


#1

Hi everyone, I am very grateful that I found this supportive and understanding community! My brother was diagnosed with schizoaffective disorder roughly 13 years ago, and while he was doing really well for the past 10 years (working full time, taking his medication regularly, going out with friends), he has recently begun to decompensate again, and things don’t look like they are going to get better any time soon. My mother has been looking after him this entire time, but she has her own health issues and has also become utterly worn out from the stress. (She also can’t speak English very well, and navigating the medical/legal system is a real challenge for her.)

I have been seriously thinking about moving back home to become the primary caregiver for my brother, but part of me is terrified at the thought of everything I’d have to give up, but mostly my career (I’m an assistant professor in a humanities field that doesn’t often have job openings even for adjunct positions, let alone tenure-track ones). But then I think about the pain that both my brother and mother are currently going through, and the things that could happen if I don’t move back, and I get even more terrified.

I’m writing to simply ask for your stories - did you feel that you had a “choice” to become a caregiver to your loved one, versus someone else in your family? What made you decide to do it, and what did you wish you knew at the time that you know now? I would also love to hear from people who aren’t primary caregivers (I absolutely think you have the right to refuse the role, if you are not in the position to take it on) - what factors did you consider? What kinds of support were you able to find for your loved one?

Best wishes to you all.


#2

Welcome to the group! I think everyone’s stories vary depending on the relationship to the loved one who is ill. For me it was one of my 2 sons who became ill. My other son made it clear he would not help care for his brother and truthfully I was resentful at first but not so much now, I feel he has a right to refuse, and a right to his own life.

I have always been a single mother from a dysfunctional and very detached family so I had no support unless I found it from groups within the community. When my son got extremely ill being his only parent, I did not feel like I had a choice and even if given a choice I would have still taken the responsibility on myself because it’s the way I am made, I felt my kids were always my responsibility and if they were disabled and unable to do for themselves I would have to pick up the slack for them as long as they needed me to.

Having cared for him his whole life as his mother and for 12 years as his mother/guardian/caretaker while he has been ill. I see things somewhat differently today. I am okay with my decision to care for my son as long as I need to, but I understand better how some moms/dads/ siblings/ spouses etc…have to find other ways to get care for their loved ones or simply refuse all together.

You lose a lot of yourself in the process unless you are personally very insightful about what you need and aware of when you are becoming depleted emotionally, physically and/or spiritually. During the course of caring for my son I became disabled and unable to work due to a variety of stress related illnesses and self neglect. It took me all these past 12 years to realize how truly depleted I became and now I work daily to do right for myself. My son is 33 and I am almost 58 and we are both doing okay enough that we can be more independent of each other for longer periods of time without me worrying the house will cave in while I’m gone.

I can’t advise you on your own situation, not really knowing all the details or challenges ahead for you. I can say that if I had a good job I liked/and/ or/ lived somewhere I enjoyed living and was faced with helping a loved one full time today, (besides my son) I would do what I could just long enough to see them in a better life situation, and try to preserve my life as I hoped to live it as much as I possibly could. (If that makes sense) For example I would try to find a supportive living situation for them (they have them here in Ohio) where the person can live independently and yet have caseworkers, nurses etc always checking on them and helping them achieve daily activities and stay on meds, go to appointments, social groups, etc…

This does take a lot of research, footwork and paperwork etc…but if the person I am helping/ or trying to help is willing to cooperate with me that would be my ultimate goal, to help only as long as I am needed and as long as it takes to achieve a safe and stable living situation for that person and then return to my normal interactions with them.

With my son I had to get him on disability and obtain legal guardianship and be rep payee over his Social Security income in order to help him because he was far too ill to help himself. Today we live together as room mates. Thankfully he is very stable today. He refuses to go to support groups etc but is very content to do his own thing at home.

I have a sister that has schizo affective disorder and I tried my very best to help her but she refused all of my help and I was asked by her doctor to get legal guardianship of her to help her get better psychiatric and medical help and I sadly had to refuse to do that, I know my limits and my son has to take priority over my sister, while he is well now, things could change as they did with your brother.

My sister does not want my help and would fight me everyday if I tried. She is 55. I wish her well, she knows where I live, she has my phone number and she has a way to get to me if she wanted to. On some level she knows my son and I love her very much but she stays away now and won’t even answer the phone or the door to us. I know I am rambling here but you posed some very good and very thoughtful questions.

I never asked myself these questions when my son was diagnosed. Other than my sons, (and knowing what I know now) I would not ever take on the job of full time caretaker for another person again in this lifetime ( related or not). I would help direct them to good resources, do things like help with rides or be supportive or things like that, but I know what it is like to lose myself and who I am and wake up 12 years older and realize I neglected myself and my own needs for more than a decade. Fortunately I am aware now and it’s not to late to remedy things.

I hope my story helps a little, there are so many here to read, all different and yet some very similar…I hope you find your answers and that your family finds workable solutions for everybody. In addition, NAMI offers a lot support for caregivers and families.
https://www.nami.org/Find-Support/Family-Members-and-Caregivers


#3

Hi Catherine, thanks so much for the compassionate and thoughtful response. Your son is very lucky to have you (just as I know my brother is lucky to have my mother, who has fought and fought to keep him safe and stable). I am glad to hear that you are also taking caring of yourself and carving out some independence of your own! I hope my brother will be able to get to that stage again, but I think it’s going to take a lot of work and time.


#4

You are very welcome! :slight_smile:


#5

like many of us it just sort of happened in a reaction to the fast changing situation. 17 yrs now with the same problems as a lot of others over the yrs. I’m 76 nd worry about the future too. I just stay in day to day mode. one thing a little different is that I run a pretty tight ship here. and I CALL all the shots and he damn well understands that = so far!! if that were to suddenly change I WOULD put him OUT and he understands that too!!! AND I MEAN IT! OUT means NO COMING BACK PERIOD!!! we all do what we have to do to survive. WE HAVE LIVES TOO!!!


#6

Welcome to our wonderful and supportive group! Let me tell you a bit about myself and situation. My son is 17, has been diagnosed as schizoaffective / bipolar, severe ADHD, social anxiety and very recently, conduct disorder. My husband is bipolar. My older son has a bit of depression, but luckily has little to deal with compared to his younger brother and dad. He has moved out of our home because his younger brother attacked him last fall and choked him. He was arrested and under court supervision for 6 months. My older son thinks his little brother is dangerous and capable of killing one of us. Not telling this to you to put fear in you - my son has conduct disorder which makes him violent and aggressive. Had another violent episode almost 2 weeks ago. He choked my husband this time and went after me with scissors. Arrested again and is in the behavioral unit of a local hospital. He has attempted suicide 3 times and did so that night, cutting himself badly on the arms, legs and throat.

To answer your questions - my situation is similar to Catherine’s. My family is dysfunctional and distant. I have no support to speak of. This can be a very isolating situation unfortunately because you may not care to tell everyone your business. There is still a stigma, unfortunately, with mental health issues. Because of my son’s tendency to violence, I am unlikely to invite people to my home anymore. I love to cook and entertain, so this saddens me greatly. I had no choice but to be his primary and only caregiver. His dad functions, works a full-time job, with bipolar, but often times is very overreactive at home. He “stirs the pot” so to speak with my son. It’s not a good situation, but it is what it is until my son turns 18 and we can find (hopefully) a place to live for him beside our home. I love him unconditionally in spite of the violence and want what is best for him, but I am afraid of him.

I work full-time and have a job where my boss is a total blessing and gives me support and love. I would not give up my job at this point. It gives me a refuge from the situation at home that I desperately need. Somehow I manage to come to work and have a smile on my face and do my job every day (I’m an office coordinator for an engineering firm). I wish I could say I have lots of friends to rely on, but I was raised in a neglectful home with hippie type parents who used drugs. I learned at an early age to be self sufficient but I have trust issues as a result of my upbringing. I have a few close friends who live out of state.

My suggestion to you is if you take this on: take care of yourself by doing things for yourself. I go get pedicures. I treat myself in other ways (buying expensive wine or something I’ve been wanting for my home). I love to garden, so I spend a lot of time outside and work in my flowerbeds. Try to take time outside of the home even if briefly - a quick trip to the library, go through the drive-through for an ice cream cone, whatever. A lot of times, I take my son with me if he wants to go. Fully depends on his mood.

I, like others on here, recommend support groups, both in person and online. Learn/read as much as you can about your brother’s condition if you don’t consider yourself fully knowledgeable at this point. Wish you the best in making this decision.


#7

In Canada we have case workers with the mental health who have an appointment usually every month.Any family member who is on his consent form can talk to this case worker.Everything went good until she got a community treatment order on her and we have had nothing but problems with her case worker.No call backs and lots of cacellation when she needed to see her.


#8

Can you take a sabbatical break and go to help set up more support services for your brother, as Catherine suggests? Even if you are not up for a sabbatical, perhaps a sympathetic employer will help make that happen.

And is he open to accepting your help? It would help nobody if you quit a job you like, only to find he won’t work with you.


#9

Or take “family leave” from work.


#10

Well said and very good point.


#11

Thank you, everyone, for the responses! They have definitely helped clarify my own thoughts and feelings and have spurred me to do more research on the various options currently available to me. I guess I’m afraid what will happen if I drag my feet and an emergency happens, but on the other hand I know I won’t be of much help to my family if I simply quit my job without a specific plan in place. Anyhow, thank you for sharing your stories and support!


#12

You can definitely research what is available treatment-wise in your brother’s locale. That way if there is an emergency, you will know who to call and what steps to take.

I am glad you will stay in your job.


#13

Just wondering what decision you made? My hope is that you kept the job you loved. We try to help a son/stepson as we can, but he doesn’t know how to show appreciation. That makes it even more difficult. I believe that we can only change ourselves and must care for us first, before we can help anyone else.


#14

Hi sunnypm, thank you for your message and kind concern. I did decide to stay with my current job, and have been supporting my brother financially. It’s hard, though, because my brother doesn’t really have the capacity to make sound financial decisions, and yet he’s also an adult so at this point I can’t step in and dictate how he lives his life. He refuses any other kind of help, and flies into a rage if my mother or I try to talk to him about his current situation (still not good) or the future. It feels like we are just living day to day, waiting and hoping for things to change.