I am new to the group - I hope you are all taking care.
I can’t stop worrying about my little sister who is schizophrenic, as well as having type 1 diabeties. I almost don’t know where to start.
My sister has been showing signs of schizophrenia for about five years. It started out with paranoia, closing herself off and claiming that we were all abusing her, and it just got worse over the years.
I don’t know how to deal with the shame and the guilt of never feeling as though I can do enough to help. I have called doctors, samaritans, therapists, police and for years was unable to get her assessed or sectioned until she nearly died.
She nearly died a few months ago from a lack of insulin (she believed she didnt need insulin and that the government were trying to kill her by lying to her that she is diabetic)
I tried to keep contact with my sister these past few years to show that I am always here for her but she has threatened me with a knife, claimed that I abuse her and blocked me.
When she was finally admitted to hospital and put on medication I should have felt better but there is this endless gaping uncertainty - what next? What damage has been done due to her poor blood sugar levels? Her eyesight has significantly deteriorated already. She is complaining about numbness in her legs which can be another serious complication with diabetes. I can’t bare to think of the rest.
My heart is breaking for her because she is clearly struggling with so much fear and confusion and I used to fear that she would hurt me (on some level I still do), but now I can’t stop worrying that if I ever take a step back, something terrible will happen to her
I am sorry to pour this out but I know I am here for the long haul. I want to be strong for her. I want to stay hopeful.
Sending love and solidarity to the rest of you
Welcome to this site @Bookworm and for sharing your story with your sister’s struggle. I am very glad that you found this forum as everyone on here who cares about someone with this awful severe mental illness has felt the same guilt and hopelessness that you feel. It feels like a struggle alone most of the time. But you are not alone.
The problem, very significant and very simple, is that even doing our best is sometimes just plainly never going to be enough to bring a stable life to our ill loved ones. Sad but true. Also, their unstableness upsets our own lives and the lives of their relatives and friends to the point where most people withdraw from their care, unless small and large miracles happen in gaining ground. That your sister won’t acknowledge her diabetes is a horrible situation, as even well-managed diabetes leads to diabetes health caused problems as you know.
The important thing is for you to try and deal with your own feelings about the situation. Shame and guilt can eat us alive, but if you’ve tried sincerely to help her, there is nothing to feel shame or guilt about going forward in your life.
I got great great help at the NAMI Family to Family classes. I cried my eyes out at many of the meetings. When I found out that most medications for schizophrenia have horrible side effects, and that many didn’t work well enough, I really was devastated.
So my advice is to take the best care of yourself that you can, to keep trying to help your sister (but not at your own expense), and to keep your own hope alive. I was very lucky that my years of attempting to help my daughter resulted in finally getting and keeping her on the right medicine for her. Not everyone is so lucky and I understand that, and wish the best for all trying to caregive.
Hi. I’m a sibling. And my brother is pre-diabetic, in his sixties and was diagnosed with schizophrenia decades ago. I know some of what you’re feeling. Oldladyblue is so right: the NAMI Family to Family class could be helpful. It does its own magic if you just attend. Being with others (and crying before, or during, or after) soothed me, at least. If you haven’t gone, try it.
I think you’ve done plenty, even more than your share given that she has threatened you with a knife. Human nature is we back off from such aggression. You’ve stayed in the game even still, trying to work behind the scenes.
I try to adopt a social worker mentality with my brother, as opposed to a loving, heartbroken sister attitude, which really shut me down. It started this way: his (former) social worker called one day and left a message on his machine and I listened to her voice in awe. She was chirpy and enthusiastic, encouraging and detached and I thought, “she’s helping him more than I am.” So I started shifting my mindset when I was with him or working something on his behalf. Eventually, the heartache ceased somewhat as I kept trying to do more things “like she did” and just assist where I could. It helped me detach from the painful bond I had and maybe form a new one. Surprisingly, my brother-sister relationship is pretty good now and he is improving in interesting, good ways.
If he ever came at me with a knife, though, I would be reconsidering everything. He doesn’t seem inclined toward violence, so that is unlikely. Maybe when he was younger, as your sister sounds like she is, my involvement would have irritated him more to provoke such words. (As an aside, he still talks at times about violent thoughts, but in life he is very, very gentle. Again, age may explain that.) Anyway, please take all this for what it’s worth and I hope it helps you.
Hi @chimain , thanks for your post. I just read it again, as @amysfo just read and liked my post (thank you amysfo), so when I got the notice, I read my own post again too, then read yours again.
I quoted that piece of your quote above because I used any form of verbal or physical violence from my daughter to involve the police in our situation. (She did have a social worker for awhile who was not so “chirpy and enthusiastic” as your brother’s, and who basically abandoned her.) However, several police in our force are trained to handle mental health alerts with wonderful methods and often greatly calm down a situation even if no threat is apparent when they arrive. They can ONLY take her for involuntary hold if a threat is re-made while they observe it. But they were at my home 40 times or more over the years before she was successfully medicated.
Any violence is a crime. Even a threat of violence is a crime. The criminal justice system is what finally got my daughter stably on the Haldol Dec Shot monthly, and she is still on it, doing well. The system and myself as her caregiver, forcing her at times to do what I thought should be done. NAMI was great, and I still have a friend who meets me monthly for lunch, whose son is currently off his meds and back to “night screaming” like my daughter used to do. But she knows the system and will get him an involuntary hold again, through the court system ex-parte (instead of a police call) because he isn’t violent and is a diabetic not following his protocol.
So @Bookworm you CAN force involuntary mental health care on your sister if she won’t care for her Diabetes or take meds for schizophrenia through the court system in your area (most likely), or call the police if you know of any active threats of harm she is making to self or others. It needs to be done sometimes.
Good luck caring for yourself and our loved one.
@chimain and @oldladyblue thank you so much for your responses and advice.
I am sorry to hear the difficult times that your family members illness has brought, yet pleased to hear these triumphs that you have described, however small or large.
@chimain I do like your approach as it seems like a form of radical acceptance where you can find peace in adopting behaviour that his social worker uses - and @oldladyblue I absolutely agree with the importance of taking violent threats seriously.
A few weeks ago I took her out and we were waiting for a train home and as it approached the platform (at high speed) she asked “what would happen if somebody fell and went under the train?” Instinctively I grabbed her elbow incase she jumped, because she had said so many unnerving things that day that I was already concerned about her. Fortunately she didn’t, and I was then able to calmly explain that they would be in a lot of pain and that their family and friends would be incredible sad as so many people would love them.
Later when I relayed this to my mum she said “were you not worried she was talking about pushing you under?” And I felt this horrible sadness come over me - this is how it can feel sometimes - trying to talk her off a ledge and forgetting that she could end up pushing me off it.
I know I need to take a step back, we have three brothers who are living their lives and are much less involved - they are engaged or married and one has a child. They don’t share responsibilities with me when it comes to my sister and I know I should be allowing myself a shot at my own life but as I am so worried that she will not do her insulin properly and this could kill her - I now feel too drained or too guilty to go out dating or forgetting about her for a week to enjoy myself. I say “a week” because I am able to leave her for the day, but my brothers can go months without seeing her whereas right now I don’t think that I could do that to her as she needs more family support than just my parents - who knows how long they will both be around and it makes no sense to jump in years down the line trying to help, as I’d know much less about her ticks and triggers.
I know that my sister is unwell and that she is suffering but sometimes I feel like this fear of a her coming to a terrible end, or bringing me or my parents to one, has become a kind of abuse. I feel trapped and there are days when I wonder if she knows this.
I think I have resigned myself to become her primary family support if my parents pass away before me. I used to be so free and just love life and now it’s simply quite grim
I don’t know if this is like a stage of grief or acceptance that many of us carers go through? J wish you both love and solidarity and pray for your family’s wellbeing.
Thank you. Best wishes to you, too.
Yes, most likely.
It is a very sobering and lifechanging thing to be a caregiver to someone with a severe mental illness or a severe physical illness. Especially sobering when they have both. The seriousness of it is not really comparable to anything else I experienced except when I was told I had breast cancer. The cancer is gone, thank God, but the caregiving for my daughter, and yours for your sister are lifelong.