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Janet

My diagnosis was actually a relief. I had spent four years noticing subtle changes in myself. Nothing I could put my finger on, but I knew things were not the same. Throughout this time, I went through several tests requested by my doctor. Thankfully, I didn’t have to push hard for them. MRIs and CAT scans, all showing progressive degeneration.

Four years later, I now had a diagnosis. Today, I’m 54 years old, with three sections of my brain affected. There is no history of dementia in my family. However, I’m no longer worrying about “what might be”. I can concentrate on living instead of searching for answers. I now have a focus on my life, my health and my family.

The healthcare system

I have three healthcare professionals: a GP, a geriatric internist and one of Canada’s leading neurologists. My GP is understanding but has made it clear that her knowledge of this disease is minimal, which is kind of disheartening. My internist is not close by, and can be hard to reach if I want to make an appointment. I’m also her youngest patient. My neurologist is very knowledgeable; she’s working to find answers that can help me.

People’s reactions

I can honestly say that I haven’t heard much from any friends after letting them know about my diagnosis. Initially, there were many messages of encouragement, saying how much strength I had sharing my diagnosis. But since then, I haven’t heard from any one of them.

Let me be clear though, I am not deterred by this. I have, as those friends stated, an enormous amount of strength, insight and fortitude; even if those friends never experience seeing it again. I remain proactive with this disease. I stay healthy, I exercise and I research enough to keep me in the loop. I participate in life.

My family reacted with great compassion and, of course, fear. My daughter and son in-law have lovingly opened their lives to my future care. My Mum has traveled from overseas just to spend time together with me. I’m hopeful that I will continue to encourage them and they will advocate with me, together against this disease.

I have recently been given the opportunity to participate in the Alzheimer Society’s Adult Day program. I attend once a week.

Final thoughts

At this point in my journey with Alzheimer’s disease, I’m still quite aware. I notice the changes and am able to tell my daughter and family so they can keep track and monitor things.

I want to let you know I’m not scared and that I have great understanding of my life and where it’s headed. I will die from this disease. My brain will stop telling my body how to function as my brain dies, and then it will stop my body from living. Death is inevitable in any life, just as it is a part of being born into this world. It’s a burden we all carry.

I have now what I perceive to be an unfair advantage over most: I know my approximate lifespan. Therefore, I choose to live every day to its glorious maximum! I love more, I experience more, and I use the phrase “do what your heart desires” to the extreme. I am your friend, I am family, I was perhaps even your co-worker. I live well and love fiercely. I have Alzheimer’s dementia. I am the face of dementia; I am 54 years old. Today, I remember you. Please remember me.

Comments

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Venie 11 days ago

Dear Janet, I am a private caregiver for people with Dementia. My heart goes out to you. Thank you for sharing your story and I most certainly won't forget you. Big hugs as you travel down the road of forgetfulness. Should I run into you, I will gently redirect you to where you need to be. Take very good care of yourself, Miss.

Sandy 13 days ago

Thank you for sharing, I'm a PSW and I worked with a woman of 55 yrs. With dementia, it was hard at first to deal with a person of a younger age. I learned a lot from her.

Here are my tips to help you understand:

  • This disease does not discriminate. It’s real and powerful. Age is not a precursor, and in fact statistics show that it can affect people as early as 30.
  • This disease is devastating and life changing for both those diagnosed and those who take on the role of caregiver.
  • The diagnosis is devastating, but for the many who have received that news, we endure. We all want to live productive and loving lives. There’s no shame in our disease, although so many people cower away.
  • Those of us living with this disease are still here—we are here now and we will continue to live. Placing your mind on “what will come?” will rob you of the great adventures you can have with your loved ones now. Stay present. The future will unfold gracefully. We have many years and much love to give.
  • Please be patient with us and try learning about more ways to help, volunteer and educate the world. Be kind and know that we are here, inside—hoping to talk to you. I will continue to advocate for as long as I am able. Please join me.
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