Our dementia diagnosis experience

Cheryl & Kevin’s Story

Our family doctor knew Kevin had dementia. He’d suspected for the last couple of years, but it was me who didn’t want him to be diagnosed. We’ve been married for 56 years and I guess I was trying to avoid the reality.

So, Kevin wasn’t formally diagnosed until after his left hip replacement. The rehabilitation service said he needed a formal diagnosis. Getting that diagnosis was probably one of the hardest things we had to do. And yet Kevin still doesn’t believe or understand that he has dementia, even though I had finally understood that it was real.

I can remember feeling very low at the time. I was sitting in the geriatrician’s office with tears streaming down my cheeks. The doctor was holding Kevin’s hand and saying to him, “Kevin, I have to tell you that you have mid-stage dementia.”

I thought that doctor was very caring and compassionate. He was talking to Kevin directly. I know that’s what you would expect a doctor to do, but we’ve had plenty of other experiences where health workers talk to me instead of talking to Kevin. And that’s difficult for both of us.

I remember thinking – How am I going to help him? How are we going to manage? Where do we go from here?

But I was in shock that day of the diagnosis, so I can’t remember whether the doctor gave me any information or not.

It’s hard to hear anything after the diagnosis, so my advice is to ask your doctor for written information. That way, you can look at it and digest it after you get over the initial shock.

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