Harold

My wife Barb was 61 years old when she was diagnosed. She was a loving and caring mother and partner, had a great sense of humour, was witty and loved to cook, travel, listen to music and dance. She liked entertaining family and friends and enjoyed quality time with those she loved. She was a stay-at-home parent in the children’s primary years and was an incredible mom to our two children.

Our family was not overly surprised with the diagnosis. We had seen a number of initial signs that revealed there was an underlying cause. Initially, we thought she was experiencing hearing loss. However, after testing, the doctor later confirmed the diagnosis of dementia, specifically Alzheimer’s disease.

As a family, we were upset with the findings, and concerned about both Barb’s reaction to the diagnosis and the feeling of the unknown on how the disease would progress. My children were concerned and worried about her, and felt the fear of losing the “Mom” they know. This was true for the rest of the family, sisters, in laws, etc. It was scary to say the least.

Initially it was difficult to talk about the diagnosis, but as we learned to cope it became easier to talk to others. Many people feel that the behaviours they experience with a loved one with dementia are unique to them, but soon learn that others share the common behaviours and it’s okay to talk openly about them. It became therapeutic to share with others on the same path as you realize that you’re not alone even with your own emotions.

The healthcare system

Our family was very fortunate during the diagnosis period, as we had and still have a very good team of medical professionals who go above and beyond to help us through the journey. Barb now lives in a long-term care home and that transition was extremely difficult and challenging. Learning to live alone comes with challenges as well as the advocacy role with those providing care. The healthcare professionals have been good with the resources they have. There just aren’t adequate resources allocated in the healthcare system to meet the ever-growing demand.

Fortunately, our family is able to have additional supports for Barb in the home at our expense to supplement her care. More resources and education are required in the long-term care home setting. We do, however have a number of caregivers who are shining stars, are golden, very empathic and are incredible when days are more challenging than others. As a family, we want them to know Barb as a person and her life before dementia.

People’s reactions

Most were sympathetic and many were very surprised with the diagnosis. Some struggled with what to say when we communicated the diagnosis. I remember one person saying, “I don’t know what to say” – this was an honest and refreshing response from our perspective.

Some unfortunately made light of it, even telling a memory-type joke, which spoke to their lack of understanding of the disease. Or maybe they just didn’t know how to react. One remark that was consistently upsetting was “Barb doesn’t seem that bad, you’d never know she had anything wrong.” While well meaning, it made you question yourself that maybe it’s not all that bad – but it is.

Facing stigma

The term stigma is defined as a mark of disgrace, something that takes away from one’s character, negative stereotyping. We didn’t experience that per se, but as mentioned above we did experience people who made joking remarks that were hurtful and challenging to hear. We focused on treating Barb as we always did and encouraged others to follow our example.

I don’t think that attitudes have dramatically changed in the community. Many people still seem to have limited education on the facts about the disease and how widespread it’s becoming. We’ve heard that “Everyone you talk to has someone they know living with dementia,” yet the general public doesn’t appear to take it seriously – hence the light-hearted responses we sometimes hear when discussing the disease.

Showing support

Be a voice for and with the person you care for. Share their experiences and stories to help build a stronger community understanding. Dementia affects many people and can happen to any family, “why not mine”.  Every person in the community has a role to play in advocacy for those living with dementia. These are our loved ones and they deserve to be treated with DIGNITY and RESPECT.

More public awareness on the statistics of the disease is needed. People experiencing the disease need to speak out more, share their journey with others and encourage people to not fear and hide from the diagnosis and instead seek help.

One final thought: Everyone says the disease wins – we say LOVE wins! Hugs are good and were invented to let people know you love them without saying anything.