Yes. I live with dementia. Let me help you understand: Robin Barrett

My husband Keith was diagnosed with young onset dementia (YOD)—probable Alzheimer’s in December 2016 at 57 years old. This was following about two and a half years of seeing various specialists. At one point, he had seen about six different neurologists.

Keith and I have been together since 2004 and married in June 2016. We eloped together in New Orleans and it was a magical time. We have a blended family with six boys (all now adults) and five grandchildren. I can tell you how much I cherish my partnership with Keith. He is kind, generous, creative and hard-working. Over the past 15 years, we have been there for each other and plan to continue to do that. Keith and I are in this together.

On being a “caregiver”

I find the words “caring for” or “caregiver” difficult for me to say as I do not feel I’m doing anything different now that Keith has dementia. That doesn’t mean there aren’t things I have to help him with now that are different, but I think the words don’t resonate with me. I have trouble understanding or dealing with the fact that a diagnosis now changes my role in his life from “wife and partner” to “caregiver.” We have always been there for each other and each of us has needed support at times. When I introduce myself or he introduces me, it is as his wife.

Reaction

I noticed changes in Keith’s memory and behaviour about three years before he was diagnosed. I would try to talk to him about it. The changes were very subtle at first. He would express frustration about someone suggesting he had talked to them about something. I was hoping it was from something else and not dementia.

As his wife, I was heartbroken to watch him go through the process of being tested and receiving the diagnosis. I think I felt numb at first and then a bit relieved to know what it was after over two years of seeing doctors.

Because I had seen the changes in him slowly over the years, even though I think I knew what they were going to tell us, I kept hoping it was something else.

The person who gave us the news was very kind and compassionate—she was the neurophysiologist who completed the testing. She warned us that reading the clinical report would be difficult. Keith was advised to go to the Memory Clinic, get his affairs in order, consider not doing the numbers or financial part of his work and plan to retire. Keith and I talked a lot about what the doctors said and how he should not make some of the suggested changes. That he should keep working and maintain a routine.

Telling family

Our family is supportive and is there for us. Some family members are still very much getting used to the idea. There were tears at times and we know it’s harder for some of our kids than others. The first year after the diagnosis, we did the local Walk for Alzheimer’s and had a huge team (family, coworkers, friends, kids and grandkids). I’m very proud of how patient our family is. That being said, Keith finds larger gatherings difficult now, so we have likely not been as present at family events in the last few years. SOME people understand and for others, it helps to add distance, too.

People’s reactions and facing stigma

We have had both a lot of support and then distance from some. Your circle becomes smaller, but for many reasons.

Most people say they don’t understand how this will play out for a person who is younger, or often mention they had a grandparent with Alzheimer’s. Some have questioned why he still drives or how long he’ll be able to work.

To be honest, most people don’t know how to react, or they can’t see the changes that he feels or see what I see. People seem to want to minimize the symptoms or to normalize them. I see family and friends feeling uncomfortable when Keith describes what he has trouble with or how he feels about things. People’s first reaction is usually shock or to feel sorry for him and us. We both find ourselves saying, “It’s okay.”

Mostly I notice people feel sorry for him and I, like there is no way that we can still be enjoying things in life. Sure, some things are different and we are scared or cautious of what the future may hold, but we try to just enjoy things as we can.

Keith and I recently got tattoos of Dory the fish from the movie Finding Nemo who lives with memory issues. We did this so that when people talk to us about our tattoo, we can educate them that people can live with dementia. Telling people about it helps bring awareness to reduce the stigma.

The healthcare system

This was the hardest part for me as his wife. Overall, I would say at times it felt like our concerns were dismissed because of his age or his capability. Keith and I are both very independent in many ways, even though we are very much partners in life. 

I think because Keith appears very capable to others (and he is) they often don’t notice the changes in him. It feels like medical professionals are very resistant to provide this diagnosis. I understand why, but we need to be better at this. I know it’s hard to tell someone this news and the process right now is to rule out all other things. I remember at one doctor’s appointment, Keith told the doctor that they had to find a better way to diagnose dementia.

Here are my tips to help you understand

• Make businesses dementia-friendly. Have people in coffee shops not rush people, or offer dementia-friendly lines. Be patient and pay attention to cues.

• Make sure to include people with dementia in conversations and ask them what they want. Don’t assume that if someone has dementia, then they can’t contribute. Ask them, not their care partners.

• Know that there are people under the age of 65 living with dementia and that they have different needs than people who are older.

• I recall this quote when thinking about stigma: “When you have met one person with dementia, you have met one person.” They are more than a diagnosis, a chart or a tag on a wheelchair or nursing room door. They are not people you can clump together the way you might for items in your home. They are human, still needing love and respect, still giving love and joy. Let’s include them in their care.

• I am not a “caregiver” just because my husband has Alzheimer’s or dementia. Know that when we signed on to be partners, we signed on to support each other. My role does not change just because of a diagnosis. We have cared for each other for years and plan to continue to do this.