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Three generations of a family sitting on a couch

My hopes if I develop dementia

Lessons from my life’s practice
By Dr. Rhonda Collins
Revera was the first company to appoint a Chief Medical Officer in the Canadian senior living sector. In her blog series, Dr. Rhonda Collins offers helpful advice for seniors and their families to lead healthy and fulfilling lives.

When you spend your life working around people living with dementia, it is inevitable to think about what you would want if you were to develop dementia. I think about it every day, as I am certain almost every family member, physician, nurse, PSW, social worker, housekeeper, environmental service worker and volunteer who works with people living with dementia does. I would guess that many of you share these feelings, and I wonder what others you might add.
“I hope you visit me. I may not remember your name but I still know you’re important to me.”
I think about the things I enjoy now. The things I enjoyed when I was younger. The feelings associated with certain people, places, songs, food, pets, memories. I know how it feels when somebody is rude or unkind. I know how it feels to be lonely. I know how it feels to be left out of conversations or not invited to things. I know how it feels when people don’t understand what I am trying to tell them or when they simply don’t listen. I know how it feels to be scared. So here is what I hope those around me will remember if I am living with dementia.

I hope you understand how important music is to me. Music is a huge part of my life, having been raised by a musician. Music is uplifting but it is also calming. It makes me sing. It makes me smile. It reminds me of so many great times from my past. I hope those around me will ask about my taste in music because I want to hear the type of music I like, not just something random. That could be very irritating. Think of an artist or a style of music you don’t enjoy and imagine having to listen to it without being able to explain you don’t like it.

I hope those around me will understand how important delicious food is to me and not try to feed me healthy food like fruit when other people are eating cake, because I won’t understand why and I will likely get upset. I want to be able to eat what I enjoy, whenever I want. If I am hungry, I might get angry, just like I do now! I hope that I will be allowed to have a glass of wine with dinner because that will remind me of good times with friends and family.

I hope I am treated with respect. Unless you’re my husband or my grandmother, I really don’t like being called sweetie or honey or dearie. I like to be spoken to as an adult who has experience and education and wisdom. And please don’t talk about me like I am not in the room. It shows such disrespect. When you are with me or caring for me, be present. Don’t tell the other person in the room a story without including me. It will probably annoy me then as much as it does now.

I hope those around me will learn about dementia so they understand that when I tell the same story or ask the same question over and over, I am not trying to be annoying and I am not doing it on purpose. I honestly don’t remember that I’ve said it before. I hope they learn that I may wander or try to leave or take things that don’t belong to me, and that sometimes I may get angry and yell or swear. I hope that they learn these things so that they do not become frustrated with me, but instead try to figure out what is upsetting me.

I hope you visit me. I may not remember your name but I still know you’re important to me. It always makes me sad when I hear a friend or family member say, “I don’t know why I come here, she doesn’t know who I am anymore”. We are human beings. We need friendship, companionship and love, even when we have dementia. Especially when we have dementia. Your presence is more important than you might realize. Loneliness is a terrible feeling. If I get dementia, please stay in my life. Tell me stories. Hold my hand. Smile and laugh with me, sing to me, talk to me. Just be there because I will need you.
Dr. Rhonda Collins, Chief Medical Officer of Revera
By Dr. Rhonda Collins
Dr. Rhonda Collins brings passion and expertise in memory care, dementia, falls prevention and clinical quality improvement to the role of Revera’s Chief Medical Officer. Dr. Collins is a family physician with a certificate of added competence in Care of the Elderly from the College of Family Physicians of Canada.