What is suffering? Who gets to decide if someone is in a state of suffering? Is that decision up to the "sufferer"?
If you know me, you know I am passionate about being a dementia advocate. This was such an exciting week for our community. I mentioned the distinction we received earlier this week from Dementia Care Specialists. I love everything this company stands for. I was able to meet Kim Warchol, president of DCS, this week. She is an amazing person and left me inspired. My partner in crime (Terra) and I have some big plans up our sleeves for the future now! And I have now distracted myself...back to my thoughts for this evening.
A statement we hear far too often is "She/He is suffering from dementia." When I began my journey with dementia, my eyes were opened to the negativity of this statement. This leads me to ask, again, what is suffering? And who makes that call? I don't think I am naive. I know that dementia is no walk in the park. I know that loved ones have their hearts broken by this disease. But does that really constitute the use of the word suffering? I suppose everyone is entitled to their own opinions. Luckily, this happens to be my blog...so I will share my opinion. I think the definition of "quality of life" is something that is constantly evolving for every person. When I was young, brown sugar cinnamon pop-tarts and nick at nite kept me happy. Things have certainly changed now, and I am sure they will continue to.
Now let me share a few stories...
T loves her baby doll. To her, that doll is as real as Hayes is to me. It is so clear that she loves being a mommy. Her baby allows her to be a mommy every single day. Think she's suffering? The smile on her face says otherwise.
J could spend all day drawing pictures. Hand her a stack of paper and colored pencils and she is happy as a lark. Her specialty is profiles, and you never know what special accessory the people she draws will have. If you walk by, she is happy to show you her large stack of drawings, each one signed by the artist herself. Suffering? Heck no.
Walk up to A and give her a big hug. Know what you will hear? "I love you so much. You are my bestest girl." Start singing "you are my sunshine" and you will hear her belt happiness at the top of her lungs.
Sweet B. He loves the ladies. I have a feeling he has always been a hopeless romantic. I say "Hiya handsome." He says "Hi beautiful." And I get a kiss on the hand. And a toothless grin. I can always count on it.
Dementia does not have to equal suffering. Dementia may change the definition of happiness or quality of life for a person. But it does not automatically result in suffering. Give someone with dementia a chance to live to their potential. Allow them to do things that make them happy. Show them love and compassion and patience. That doesn't sound like suffering to me.
If we change our thinking from a negative "suffering" perspective to a positive "thriving" one, then we can help people with dementia live a fulfilling life.
Thanks for reading!