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.