Streamway Villa resident shares her story of living with early-onset Alzheimer’s PART 1

‘Sally’ hopes her words will raise awareness of the condition’s progression and how it impacts her life

Streamway Villa life enrichment co-ordinator Christina Doughty did a series of one-to-one programs this summer with a younger resident of the Cobourg, Ont. long-term care home who has early-onset Alzheimer’s disease.

During these sessions, the resident, whom we will call Sally, dictated to Christina her thoughts on what living with cognitive impairment is like. Her words also illustrate how the condition’s progression impacts her life.

Sally’s goal is simple: she wants others to have a glimpse of what it is like to live with early-onset Alzheimer’s disease and to understand how she feels about what she has lost and what fond memories she can recall.

“When we started doing this, she told me she wanted to raise awareness for anyone that is going through dementia or anyone who has a loved one that has dementia,” Christina says.

Sally also describes the empathy she has for new residents and how she understands their anxieties and fears.

During the coming weeks, The OMNIway will be featuring more excerpts from Sally’s story.

This is Sally’s story:

Chapter 1

June 20, 2019, 8 p.m.

Crying for a few days.

Some people are not trying to understand how I feel. It’s too hard to communicate my feelings and to voice how much pain I am going through. It seems to me that they want me to be the person that I use to be but I am not.

It’s my helplessness. It’s my disease. I want this to help people so that they can get help when they get lost like I do. Singing songs just now brought out so many emotions, and it showed me that I am able to remember the things that I once knew. It allows me to find myself. A brief pause.

When they sing and have cake and all of that, it helps me and I understand that there is more to life than being sad all of the time. I can’t always be sad. Even though my heart says I should be. I refuse to be sad. I want to help other people because by doing that I am helping myself, too.

My mother just moved and I haven’t seen her. I still don’t have my dog. This makes me so upset. I don’t get to do anything with my dog. She is still mine, but I don’t see her. She’s my everything.

I have been thinking about the new people that come in. They are so scared. They know nobody. They need more support. Sharing a room with a complete stranger is not the greatest. She still doesn’t know who I am. She’s not a good fit for being my roommate. We are different ages. We have nothing in common.

When people pass, it’s difficult. Jean and I didn’t have much time. We were like sisters. It was heartbreaking. I think about her all the time. The family decided it was best if they held the celebration of life quite a while after her death. This was difficult for me to get closure. It’s a whole different world in long-term care.

I have a brother who is very quiet. Mom has left and he is there by himself. I don’t know what is going to happen there. I can’t see him or help him. It has always been my parents helping him. He won’t pick up the phone. My cousin helps him. I am thankful for the help I get.

Flowers are a big thing for me. It’s something that I can still do and that I still love to do. Not much of my passions I can do anymore. This is why I cry. A week ago. It just came all at once. I realized this is my life now. This is the rest of my life. It’s a horrible feeling.