SANE Forums

[AMAB]

Hi @Harmonium, thank you for sharing some of your difficulties in caring for loved ones with MD and alzheimers. It does not sound easy for you either. You have provided some wisdom from your struggle though, so thanks for that.
Yes great advice obviously to take care of yourself using exercise. I definitely relate to that, exercise is deeply grounding for me too. Agreed reaching out to services such as carer gateway is also important. I did that and they reached out with counselling or peer support options which I struggled to decide upon. I chose counselling although I also reckon people's lived experiences of schizophrenia would also be beneficial for me to listen and learn from, especially those who know they have it. Finally, I hear you about being allowed to have a life too. I was really struggling with the guilt of not doing enough not saving her, but she's very strong willed, and my own life is not exactly secure so I have had to become kinder to myself and more detached to the outcome with my mother. I have two siblings and we are trying to put guard rails in place to prevent her being sectioned again, which and an older person I think was heavy handed in retrospect. Mum's refusing to take her next injection so we are just trying to get her to agree to having an assessment of the medication she's on and the side effects she's worried about. I do hear you in that we will let her choose even if her choice is destructive to her wellbeing. Hence the guardrails.

[Harmonium]

I found peer support largely focuses on looking after yourself/myself so we can be objective and cushion the stress. I keep working on building resilience so I can make good choices, knowing that many people depend on me seems to help me function, but I’m not always okay with every decision it’s just that sometimes timing dictates the rules. I wish I had more time and more gumption at times. But I do the best I can with the information at hand and try to ensure dignity of my loved ones is preserved optimally. And their choices respected. But it is difficult with my brother who lives in a world unlike reality. He sees things differently - literally. He hears things - that are real to him but are not happening. And that is his so tricky to work with… Because I don’t hear what he hears. He lives in terror, and crises is his everyday. But it’s not real and I don’t know how to calm him or help because it’s not really happening. So….it makes my father with Alzheimers look like a walk in the park. My father seems blissfully unaware that he’s not himself and that’ I take as a blessing. He is relatively peaceful. But my brother’s season with schizophrenia is cataclysmic- that is why I am here, I don’t know how to help him more and keep myself and family safe. Consequently, I said we can’t see each other until he has a medical review and he disappears. And I think about him every day. I feel for him and I wonder how I can help more…

[tyme]

That's certainly a lot to sit with @Harmonium . I hear how much you want to help. Are you linked in with any services specific to the need of your mum? 

Please know you are not alone.

Hi @AMAB @mimosa @RosaG @Bea 

[Harmonium]

Hi @tyme and families of loved ones with MD… Yes, it’s something to sit with at times. I wish I could heal my loved ones particularly my brother. Wish I could reason with him and take away his suffering. My brother is too young. I feel a deep loss for who he was. I just want to note that I did speak with a specialist who said therapy can be very helpful for him… But it would be contingent on him staying in one place and being open to therapy and that is the tricky part. Tied in with the housing crises it is a lot more tricky. Other family is elderly or has passed on and I have downsized and cant keep a room for him partly due to cost but also, we have a young family here so it’s an unsuitable permanent arrangement. That feels wrong, but it’s a reality. Someone without full cognition faces a struggle compounded with other issues like homelessness. But my LO will not even look at options or discuss.
Anyway, I digress. I posted here to discuss the benefits of therapy if you are able to support this with a loved one it can be incredibly beneficial. Therapy comes in many forms. Professionally directed and/or self directed. I find cooking and music therapeutic. I wish I could support therapy with my brother but we have to wait til he’s more stable. Until then…

[tyme]

It's great you have found the creative therapies that work for you @Harmonium . And you're right, therapy comes in all forms whether it's art, cooking, exercise etc. 

As for your brother, I hope he comes to a point where he can find what works for him. Please continue looking after yourself. I hear it is not easy.