Annabelle Carter Short has been the primary caregiver for her mother, who has was diagnosed with dementia, five years ago. She describes her experience and what she has learnt on the journey so far.
Today, on Mother’s Day, my family will have a small gathering at home. My father passed away in 2014 after a stroke and my mother has been living with me since then. She is 82 and has dementia.
Going out to eat can be stressful and overwhelming for her, so we’ll stay home. I’ll make some of her favourite dishes. She is my cooking inspiration. She was always in the kitchen. Cooking has been always an engaging and stimulating activity for her, so I’ll involve her in some activities.
Mum did a lot for me growing up. She was probably my biggest confidante and she guided me through everything life threw at me. She was there through heartbreaks, graduations and, of course, when her grandchildren were born.
As she got older, though, the tables started to turn. She needed more help and when she was diagnosed with dementia, I knew I needed to be her caregiver.
How it started
Dementia isn’t something that happens overnight. I lived rather close to Mum, so I visited her often. Eventually, I started noticing odd things. For instance, she’d have trouble remembering how to make meals that she’d made since I was a kid. I noticed that she’d lose track of our conversations. One night, during a family dinner, she couldn’t recall my husband’s name.
At this point, my husband and I were getting concerned. We managed to convince her to make a doctor’s appointment to work out what was going on. That’s when we got the news – Mum had dementia.
On hearing this, we were quick to help her move in with us and I took over the primary caregiving. To help your own ageing family members in this situation, I suggest you learn some of the warning signs of dementia so you can catch it as early as possible.
Don’t take it personally
There are certain behaviours that new caregivers should be aware of. Individuals with dementia tend to have mood swings. They can sometimes act aggressively.
As someone who had always been so close to her mother, the first time I was on the receiving end of a harsh comment, I was shocked. What I had to come to terms with rather quickly was that these comments weren’t sentiments from Mum. Instead, I had to accept that this was the disease and that it was another thing to take in my stride.
Take advantage of the available resources
One thing that I cannot stress enough is that no one can take over caregiving activities completely and on their own. To do the right thing as a caregiver, you’re going to need to know how to take advantage of the resources that are at your disposal.
A support system
As much as I would like to think otherwise, I can’t take care of Mum on my own. It’s physically impossible for me to be with her 24 hours a day, seven days a week.
This is where my support system comes into play. When I need a break or time to rest, I know I can lean on my husband, my brother or even my kids. All of us are on the same page and are aware of what Mum needs.
A support system also helps me emotionally. Not much can prepare you for watching a parent lose his or her independence. I don’t think I could have been quite as successful in flipping roles with my mother without having someone there to help me through the process.
For anyone without family support, occasional respite care might be an option.
As I said, I can’t be by Mum’s side at all hours of the day. One morning, I was terrified to find that she’d left the house without any of us noticing. Luckily, a neighbour who was aware of the situation quickly called us to say Mum was walking around the neighbourhood on her own.
This led me to search for something that would help in case a similar situation in the future occurred.
The best answer was a medical alert system that could be worn on the body. In my case, I bought a medical alert that hangs around the neck, so that if Mum was hurt or lost, she could call for help with the press of a button. Since she has never been tech savvy, it was vital that it was easy to use. I would also urge you to select a device with a GPS tracker so that if a loved one gets lost, but does not press the button, you can still find her or him.
Communicating with Mum
As things progressed, I realised that the way I communicated with Mum was changing. It was easy for her to lose the thread of a conversation. I want to share with you some tips for communicating with someone who has dementia.
First, make sure there are no other distractions. For example, if the TV is on while we talk, Mum is more likely to have a hard time focusing. I also learnt that simplicity is key. If I ask her long, winding questions, she struggles to answer. On the other hand, if I ask a simple question with limited options, she finds it easier to answer.
Asking a question such as “What do you want for dinner?” may also be a little overwhelming. Instead, I usually phrase it in a simpler way: “Hey, Mum, do you want X or Y for dinner tonight?”
I also learnt patience in communicating. It may take Mum some time to answer or continue the conversation, and that’s okay.
I try to keep Mum in the loop on what we’re doing day-to-day. When doing this, I don’t throw too much at her at once. I give her a simple breakdown and, when it’s needed, I fill her in again as the day goes on.
Recognise the change in the relationship
If there’s one final thing to leave you with, it’s this: your relationship will change. But it isn’t over. Even after a dementia diagnosis, even after you become your parent’s caregiver, there are still more memories to be made. While I still wish that Mum didn’t have to face this hardship, I value the mornings that we can still laugh together on the front porch.
Taking over as Mum’s caregiver was a big change in my life and there are days when it seems overwhelming. Overall, though, I wouldn’t go back and change my decision to do so. Just as Mum helped me through my life, I’m glad that I can be here for her in her time of need.
Annabelle Carter Short was born and raised in the United States and is a professional seamstress living in Perth.