TALK ABOUT IT: Mental Health, Schizophrenia and Dementia with Conny
Welcome to the first of hopefully many guest posts in Katherine's Corner. I am absolutely honoured to have been sent an article by the wonderful Conny, a dear friend of many people in the Sapphic Fiction community. This thought-provoking article will speak to many, and I thank Conny sincerely for being so open with us about her and her mother's experiences with mental health, schizophrenia and dementia.
If you also have a topic you would like to write about, then please do get in touch with me by finding me on social media, or emailing me - my email address is on my website.
Thank you once again, Conny, for sending this article.
Mental health and dementia are two topics that are very close to my heart. People who already know me or have followed some of my tweets know why. Before I start to talk more about these things I would like to say please bear with me a bit when it comes to this language. Even though it seems to be easier for me to explain things in a foreign language, the way I do it definitely won’t be perfect. I am a perfectionist and hate to make mistakes, so the thought of doing them scares me. Just like opening up myself scares me.
The reason I haven’t talked about my family and my feelings for a long time is because I was
ashamed. I always struggled to express my feelings, but how should I ever have expressed what happened at home? I always thought no one would understand what it means to have lost my mum to schizophrenia. And I actually still think today that most of the people won’t understand. In the end you can only understand things you have experienced yourself. And even then, it’s still not possible to understand another person’s feelings, because they are the other person’s feelings. Just like your feelings are your feelings.
But what I know today is that it’s still important to talk about the things that bother you. It’s important to make others aware that everyone struggles. Maybe the person you talk to has their own struggles you haven’t known about. Maybe they were scared to talk about it like you were. Opening up to each other even if it’s about totally something else, can be healing. To know you’re not the only one who struggles can be a huge deal. At least that’s how I feel about it. Not too long ago I met someone online, whose mum has schizophrenia too. It was actually for the first time I met someone with similar experience and let me tell you this was huge for me. Just to know this person gets it was wow. I wasn’t scared anymore to open up because I knew she understands.
Have I already mentioned how much easier it is for me to type down my thoughts than I will ever be able to when I speak? Writing also means to use way more words than when I speak. Not sure if it has anything to do with being autistic, but I guess for me this is one explanation. The reason I am better doing that in another language probably is the distance to my upbringing. It gets to me way more to speak about what happened in my first language. In English it’s a bit like looking at things from the outside. Like you’re the narrator in your own story.
But where was I? You see I get often distracted when I write… Even if maybe no one laughs about that fact, I definitely think it’s funny. Because when I speak, I get to the point and there won’t be a talking around things. Trying get back on track, means going back to my mum’s schizophrenia. For many years she did ok. Her meds worked well and she didn’t have any episodes. But then Covid hit. Today I am sure that the whole isolation hit her so hard that her meds didn’t work anymore. What followed were schizophrenic episodes, that included a huge paranoia. When she was at the mental health clinic, she was sure people stole from her, that they wanted to kill her and so on.
But there is another thing that came up aside from her schizophrenia. Very slowly what was more and more noticeable was how much she forgot. At the beginning we thought it’s her meds. But well as you will see in a bit, it wasn’t her meds at least not totally. I don’t wanna bore you with my mum’s whole story. What followed after her time at the clinic, were a few months in a care home, another few weeks at the clinic, a new care home, another time at the clinic, another few weeks back in the second care home, a collapse and her almost dying. Being saved at the hospital, us looking for a new care home in our area. Mine and my wife’s energy getting sucked out from us, and then when we almost gave up, finally finding a new care home close by. My wife’s persistent made all the difference.
Finally, we thought. We can finally breathe. The new place is the care home she still is today. One that also has a unit for older people with mental health problems. After a bit of a difficult start my mum started to improve there. We spent a wonderful Christmas day with her and my father-in-law, who has dementia too. We were so happy. Then on the next day just a day before our short trip, the care home called. My mum collapsed. She had a seizure and was brought to the hospital. Another time she reacted to the meds. Another time it was close. She was saved again. After she slept for a few days, she slowly started to improve. But this seizure took its toll. Even if she got better day by day. She isn’t the same than she was before.
Her forgetfulness got worse. Worse in a way that she wasn’t in the right place again in the new care home. Fortunately they have a dementia unit just one floor up. Things look the same, which should have made it easier for her. I guess it didn’t make it worse, but all the moves during the last years of course are confusing. Even if she forgot about the move two days later, I believe deep inside she felt something was different.
The confusion actually is the most noticeable right now aside from her forgetting a lot. My mum is scared. She often doesn’t know where she is. She can’t remember phone numbers or at least she thinks she can’t. What I mean with that. It’s possible she calls me and asks me about my phone number. The phone number she just used. Or she thinks I don’t live where I live. I am not sure if I will ever know what to say in this moment. It is said, you shouldn’t argue or talk back. You shouldn’t say what they believe is wrong. But lying is something I struggle with and what should I even say where I live than here at home? Maybe this actually is the answer. At home. I am going to try this the next time she asks me.
I read somewhere that what makes dementia difficult are these little small deaths before a person actually dies. And that is so true. You will slowly notice all of the things they can’t do anymore. Things they always knew are gone. Your roles will be reversed. It’s like you’re the parent to them they once where to you. Even though it’s how I felt most of my life. My mum as much as she wanted, never was able to look out for me, to protect me. The situation isn’t that unfamiliar, but in the end it still is. Because no one can teach you how to deal with this.
What breaks my heart the most, aside from slowly losing my mum, is to see how she struggles. When she tells me she would rather be dead than be like this. As horrible this may sound, I hope for my mum she can leave before it gets worse. Before she forgets how to hold fork and knife, before she forgets how to walk and other things. I don’t want that she is scared. I wish I could make her feel safe. I wish I could take her confusion away. Of course, I know that my possibilities are limited. So, I am going to do what I can to make her life at least a tiny bit better. Like giving her a whiteboard with some notes.
Right now, I feel like I have written so much, but don’t actually know if this is even worth a read. If it’s not more confusing than anything else. If there is even a point. I often feel alone and I am angry. Angry at life, at this disease. Life often isn’t fair, but I know that’s how it is for everyone. Dealing with all of this is so overwhelming. Then I’m asking myself about the sense of everything. But then I have to think again about what I said in the beginning, other people won’t understand your feelings. But I still feel that it’s important to talk about it. On the one hand to let go of things. Bottling up things will only make it worse. On the other hand, to make others aware schizophrenia and dementia exist. Especially that dementia can’t be healed and that it’s one of the cruellest diseases. It can happen to anyone, no matter who you are. It doesn’t hold back. I really hope none of you ever have to experience any of this. But if you do or maybe going through something similar right now (or did in the past), please know you’re not alone. I often notice how much it helps me, when I read about other people’s experience. I know I am repeating myself, but this shows me how important it is to talk about this. Then maybe just maybe one day there is someone who needed to hear exactly that.
So please let’s not be quiet, speak up when needed. Especially when you feel someone is making fun of people with dementia. I feel like it’s important to not be quiet in these moments. Believe me jokes like this make me very angry, but then I tell myself that maybe this person doesn’t know better. They probably never knew anyone with dementia and don’t realise that the person just next to them is breaking apart. Give them a chance. Tell them about your experience, help them grow and maybe even find an alley. It’s often the unknown that scares us and only by learning we will be less scared.
I am really not sure if anything I just said made sense or is helpful in any way. I know that writing about it helped me once again to process. And well, if any of this just made one person feel less alone, I feel like I have succeeded. Thank you for reading.