Marlene #ilivewithdementia

My mom has dementia. As her daughter, I want to fix that, but I can’t.

Prior to her going into a personal care home, I was Mom’s main caregiver. It was difficult. She would forget things, and she’d roam around at night. She would get dehydrated because she wasn’t remembering to drink water, or even eat.

I had a lot of mixed emotions when our family made the decision for her to go to the care home, but she really needed 24-hour care, and I needed to regenerate. It was still hard for my siblings, though, because they had their perceptions of what things were like with Mom, but they didn’t fully understand because they weren’t the ones living with her. But I knew the move was for the best; she’s now in a safe environment and getting the medical help she needs.

Along the way, I received assistance. Sherry Asham at Peguis First Nation Health Centre was instrumental in providing information about resources to help me understand the disease. The Alzheimer Society workshops taught me how to seek resources and solutions, and they opened my eyes to what it is like to have dementia.

I learned how to communicate and connect with Mom and how to be more compassionate and understanding. I now speak with her about what she is experiencing in the moment. For example, sometimes she hallucinates. She’ll say, “Do you see those people over there?” I used to respond with, “Who, the people on TV?” Now, rather than explaining what’s not there, I use different dialogue. I say, “Wow, that must be scary, Mom.”

The change in my approach has allowed me to be close with Mom again. I comb or curl her hair and we spend time just being together, visiting and doing activities at her care home, like listening to music.

Through talking with others at the Alzheimer Society workshops, I‘ve come to realize that I’m not alone. It’s wonderful to hear other people’s stories and to laugh together – it helps alleviate my worries and gives me a better perspective on things. The connections I make, the resources I get and the personal testimonies I hear help me to have a more relaxed, positive outlook on my mom’s situation.

She is still the same person inside that I have loved all my life, and I have learned to communicate that love through positive actions.

 

HERE ARE MY TIPS TO HELP YOU UNDERSTAND

  • It’s important to remember that the person is in there, they just can’t always communicate. Care with compassion.
  • A diagnosis of dementia isn’t the end. Get the tools you need so you can relate to the person with dementia.
  • It’s better to be proactive than reactive. Learn everything you can to educate yourself about the disease.
  • Don’t forget to take time for yourself. As caregivers, we need to care for ourselves and take care of own well-being.
  • Listen to others living similar experiences. Laugh with them. In the end, we are all just doing our best.


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