Twenty Nineteen

by | Apr 20, 2019 | Family | 5 comments

I’m not sure how to start this one.

Dad’s dementia is worse. His memory recall is worse. His cognitive function is worse. His vocabulary and speech is worse. I always think I’ll get used to it, the slow decline, but I don’t get used to it. I think it will be okay because I know what to expect with this but it’s not okay. I think I will feel at ease because I know what happens next. But this is far from easy.

We are having the same conversations almost one after the other, I am repeating myself a lot. That part isn’t frustrating. It doesn’t bother me. I think I know him quite well, I can see it on his face, in his eyes, when something isn’t registering, when it’s not making sense, when he just can’t hear it and just blurts out a response he thinks matches whatever I’m saying. I am prepared to repeat myself, to explain myself, to slow down. To deal with this, I find myself sharing less and less. I’m actually lying to him.

And I worry about lying to him. I try not to do it. (I already do.) I know that as his dementia gets worse, he’s going to get paranoid, suspicious, judgemental. (He already is). And I’m going to be the first target. (I already am.) He doesn’t need any (more) reasons to mistrust me (more). (They’re already there.) I try not to lie to him but then I realise how much information he just doesn’t need. About my day, where I’m going, who I’m going to see, whether I’m freelancing, working or volunteering, if I’m going to university, library or therapy. To him, when I am out of the house, I am out of the house. It doesn’t matter what I’m doing, the only thing that matters to him is the time I come home. So I tell him the things that matter to him. ‘I’m going to work, back at seven, eight, nine…’ And when it hits ten, I know he’s asleep, in bed, and it doesn’t matter what time I come back.

Until about midnight. Then two. Then five. Then seven.

He wakes up at these times in the night. Yes, it is like clockwork. Yes, I know this about him. Yes, I time my journey back so when I get in, he isn’t awake. I want to pretend I was home earlier than I actually got home. And… I just don’t want to see him. I can’t explain that. I just really don’t want to have to greet him or bump into him, and say loudly ‘hi dad, you okay?’ and he will say ‘yes,’ no matter what because he can’t hear me, he doesn’t have his hearing aids in and he’s usually a bit disorientated at this time of night (is it the lighting, is it because he doesn’t use his oxygen, is it because he’s just woken up) and I’ll say clearly, ‘good night, see you in the morning.’

Yes, it is like clockwork.

In the morning dad will ask, ‘did you sleep enough?’ And I’ll say confidently, ‘yes I only got home at-’ whatever time I actually got home minus two hours.

And I’ll try and start a conversation but he will say ‘yes,’ no matter what because he can’t hear me, he doesn’t have his hearings aids in yet, but when he gets them and I repeat myself, and I repeat myself again because the TV is on and when he mutes it and I repeat myself, and I repeat myself again and… I try and start a conversation because he can’t.

A part of me knows he must want to talk and ask me about my day, ask me how I am but he can’t, he doesn’t know how to anymore, he really doesn’t know what to say. I can see him trying, and I can hear him through the silence. Sometimes I will just talk but I will end up repeating and repeating myself. Sometimes I will just give up. I’m tired. I want to tell him I’m tired. Why don’t I tell him I am tired? I guess it’s the same reason I lie to him. I just want to make things easier for him.

My life is complicated, my schedule is complicated, my feelings are complicated and well, he just doesn’t need complicated. He can’t make sense of it and to be honest, he can’t remember it.

I think I do feel a loss because I do want to share my life with him. Share my good days at work, exciting dinners and cooking with friends, progress with my degree and placement. But there was a definite day when I just stopped doing that. And it made things easier for him, and for us, our interactions. Because when I’d share, he just couldn’t make sense of it or find the right words to reply. It’s not that painful or personal for me, I know the man has dementia. It’s just… I guess it’s just accepting it all. The memories I still hold that he has let go of. The conversations we will never have again. And the conversations we will have again and again and again.

I am accepting it all.

Written By Sabah Choudrey

About the Author: Sabah Choudrey

Sabah Choudrey is a renowned consultant, writer, and speaker. With a background in public speaking, writing, and therapy, Sabah is dedicated to advocating for mental health and LGBTQ+ rights. Their work has inspired many to embrace their identities and live authentically.

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5 Comments

  1. Auradel

    This is captures all the feelings I was facing with my mom until communicating just wasn’t possible any longer. I’m sorry you’re going through this and it’s unfair that you are having to hold so much . Thank you for writing this I hope you know that you’re words are affecting so many for the good and uplifting their lives.

    Reply
  2. Just A Sister

    Sabah, you and your father have my duas 🖤

    Reply
  3. Tate

    Sabah, that is so beautifully written, it resonates with me on many levels, I traveled a journey through dementia with my Mum. There is so much I could say, but, I feel you have said it all. I love you and respect you Sabah and often wish I’d had more time to hang out with you. You always bring something precious to my soul each time I hear you speak or read something from your heart. Sending you solidarity and hoping you manage to find moments of comfort along the way to keep you going. Xx

    Reply
  4. Effie

    Oh, Sabah, I’m just so very sorry. Dementia runs in my family, and every time a close relative starts to show the early signs, I think that this time I’ll be ready because I know what’s coming, but it never hurts any less. I wish so very, very much that you and your father weren’t going through this.

    Reply
  5. Fred

    This part can be so difficult. Thinking of you.

    Reply

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