My mom used to be my person. If something good happened, she was the first one I would call. If something bad happened, she was right there on the other end of the line when I called, even if it was 1am.  She was just that kind of mom. We spoke daily, mostly about nothing really. I felt heard. She held me together through my marriage breakdown and guided me through its make up. Despite her hiding and battling her own demons, she fought mine too. She guided me through life. She was just that kind of mum.

But now when I tell her that I’m her daughter, she says, that’s a bunch of bullshit. I’m still the one she calls out to when she’s frantic with hallucinations. When the nursing home calls me to rush over to help settle her because she’s being aggressive towards them, I don’t know what to say and I feel useless. I’m of no help. She screams at me frantically over the phone. She screams telling me how they are violating her privacy.

 “I’m a proud African woman. I have my rights”.

“God will punish you for putting me in here. He will punish you!”

The conversation begun well.                                      Within minutes, frustration set in.                              Then she walked out, never wanting to see me again.

Are you there God? Are you really there?

Sitting in my car outside the nursing home, I stare at my phone, plucking up the courage to go inside and face the verbal abuse. I have a bout of anxiety and nervous bowl movement the moment I step inside. But I have committed, I am inside now. I cannot turn back.

She tells me I’m useless and of no help. She wants me to call her daughter Amanda because I’m making up stories and making her feel like she’s loosing her mind. Yells at me saying that none of her children would ever disrespect her the way I currently am. I’m a foolish woman. She calls out for my sisters. They don’t usually answer her – they both live in Europe and rarely call her. I’m always here.  I show her pictures of them and it brings her such joy. We have a brief moment of peace and that gentle woman is back. Then the switch – the sudden fit of rage is back. I’m tired. It’s just so hard hearing those words come out of her mouth, even more when they’re directed towards me… I want my mum back.

She’s been there for me through everything but she doesn’t remember. I want to be there for her but I suck at this. I lose her a little more every day. I miss her.

No one seems to really understand. When people ask how my mom is doing I don’t really know what to say. No one else really knows what to say. I miss her. Other people are out with their moms having lunch and Christmas shopping. I’m over hearing “it’s not her, it’s the disease”. I’m over here trying to get my mom to take a bath, eat and trying to convince her (unsuccessfully) that she is safe and that I love her.

I sometimes feel like I’m alone in this. I wish there was a cure. We all do.

As a carer please seek help. Don’t bottle up those emotions. The frustration is real, it’s normal and doesn’t make us bad people for feeling this way. Find a counsellor and/or support group. We are not alone in this journey. You’d be surprised how many silent dementia or alzheimers carers are out there. We need to stop caring in isolation. Trust me I know how difficult it can me to not only ask for help, but to also articulate what you need when you don’t know what you need.

So we care in silence.