Daughter, College Student & Caregiver
Age: late teens
Care Role: Caring with her siblings; lives with Loved One
Age: mid 50s
Diagnosis: Early Onset Alzheimer’s
Progression: Diagnosed four months. Lives at home.
Mummy was diagnosed a few months ago with Early Onset Alzheimer’s. Right after that, she fell down the stairs and suffered a brain injury. Since then, she’s declined fast. She lived on her own before. Now she can’t be left alone,: she hallucinates and she wanders.
Mummy hit her head, I'd say about 2012 . We think that's what it came from. A couple of times over the last few years, she’d say “I think I have dementia or Alzheimer’s” and we just kind of put it off as old age or something. She started noticing first and then we started noticing.
Mummy stopped working two, three years ago. That was the really early days. I didn't know there was anything wrong with her. When she was diagnosed, it started making sense. So it's only really been this year that I realized. She stopped working because she was forgetting things. Because I’m the youngest, I was always protected from this information. But my siblings helped get her out of work. Mummy never drove, so that wasn't a problem.
One time she walked down the road and just stopped in the middle and didn't know what to do. That’s when we started to get her tested for stuff.
It took us maybe 6 years from noticing the problem to get a diagnosis. She knew from the get go. But when we finally got the diagnosis in June, she wasn't properly there anymore. If she’d been diagnosed a few years ago, it would have broken her heart. But she didn't really react to it now. She didn't really get it.
Some of my friends are very awkward about it. I would love to speak to them openly about my mum and caring for her. I’d love to have someone to go to besides my family, because I know my family is going through it too. But mostly my friends are just avoiding eye contact and saying “oh, i’m so sorry.” I’d just love someone to say “how’s your mom doing?” I love for someone to start a conversation because sometimes i just want to rant.
Personal Care and Day-to-Day Stuff
I’m the main caregiver for Mummy because I live with her. Mummy has five kids. We have a task wheel that my sister makes every week. So we switch weekly. Right now, I’m sleep in the bed with her. She wonders at night. So I do night shifts and get up in the morning with her.
She had a bad fall in June. One week after she got diagnosed, she fell down the stairs. Before that she was independently living. We were able to leave her in the house. She was able to go out. She would keep herself occupied.
We had to stop her from cooking a few months ago. She wasn't much of a cooker anyways but we had to stop her. Not even tea. She drinks about five cups a day. But she kept hurting herself, so we had to get her to stop. To get her to stop cooking, I’ve tried to show her that I will take care of things. I have certain times and I tell her “this is your lunch” or “this is your breakfast.” Now if she’s hungry, she tells me and I bring it.
She can’t wash or shower on her own. She can do some of it, but I have to wash her hair and we put up bars in the shower.
I’m not sure if she feels like we are taking away her independence. My sisters took over all the bills and Mummy keeps saying they stole her money. I have to keep explaining that to her. It's kinda of embarrassing for her. She knows she can’t do it on her own.
We don’t track her like some other families do. We're always with her, except for the morning when she gets out of bed before I do. We had a baby monitor for her during the night time, before I slept with her. Then during the day my sister is with her. Mummy knows not to leave the house.
But since the fall, we can’t leave her alone. She doesn’t know where she is going. The other day, I was sleeping upstairs and I heard the door shut. She was walking up the street. That’s why we keep that task wheel. So she is constantly with someone one. She has started to notice. The other day, I said “Mummy, I’m gonna go for a quick shower.” And she got offended, realizing that we are always with her. She’s getting a bit claustrophobic. But she doesn't sit down anymore. She’s always walking.
She's always said to me “no matter how sick I get, don't put me in a care home.” I am really stressed with that. There's going to be a time where I won't be able to look after her. I worry about my own life. It sounds awful but I will keep her here as long as I possibly can. Then, whenever I really can't, then I’ll get in home care. Right now, I’m really stressed about the future. But I am trying to take it one day at a time.
Sometimes I forget she is sick and I explain something to her like I would have and she gets very confused. I wish I would be a wee bit more understanding, explain things to her slowly so she doesn't get confused. Sometimes I worry I’m too harsh.
Mostly my mum doesn't realize she has Alzheimer’s. But then sometimes she realizes she does. The other day, she broke down in tears crying that she is so sorry she is doing this to me and that she will never leave me. I don't want to let her know that I am scared too. So I comforted her and waited for her to calm down. But I miss the old her. I miss my mum and her guidance. I miss having a conversation.
I think we’ve done a really good job as a family coming together to support my mum and one another. The task wheel has really been good for us in terms of splitting responsibilities.
I’m very lucky to have older siblings. They sat me down and said if you want to do anything, just tell us. They know I’m still young. They say “anything you want to do, I'll come down and take your shift.” We are lucky mummy had five kids so we can do this together. That’s why I am not as stressed as I would be.
I really try to appreciate the moments I get with her and not be too emotional about the hard stuff. Sometimes it's helpful not to think of her as my parent anymore.