Robin Giles of Ontario, Canada
Husband is living with early-onset Alzheimer’s
I have a lifetime of favourite memories of Jo but one that I frequently return to is Jo playing his guitar to unwind after a long day of teaching. He loved making music and I loved how his voice & guitar would fill our home – this is one of the things I miss the most. Alzheimer’s completely devastated the future we had planned together when we were just settling into our “grown-up” lives; it robbed Jo of everything he worked so hard to achieve before he barely got started. This disease has altered my life by making me a full-time caregiver – caring for Jo, working full time as a teacher, all while mourning the person sitting beside me is exhausting. One piece of advice I can offer is to not be afraid of documenting all stages of your journey. Trust me, at one point you will look back on earlier stages and see that time differently, and you’ll be thankful to have the memories, even if at the time they seemed so painful. One thing I would like the world to understand is that Alzheimer’s isn’t just an older person’s disease. Jo was finally diagnosed when he was 37, he’s now 42 and in the later stages of the disease. And also that Alzheimer’s affects all parts of the body as the brain is continually and irreversibly damaged; it isn’t just about forgetting – if only it were that simple.