



This post is dedicated to care partners worldwide, many of whom are unseen and unappreciated. On behalf of those you care for, thank you for all you do.

July 13, 2014: Dear random person who sees my mom from time to time and feels the need to point out she has bruises all over her body that look frightening and she has really declined a lot since the last time you saw her and she can barely walk anymore and she’s asleep when she should be awake and sometimes vice versa and you hardly recognize her as the person you used to know and you’re really shocked and feel bad seeing her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if it were you and you would rather be shot than end up like her,

Yes, I know. I see Mom virtually every day. I spend endless hours and fleeting moments with her talking nonsense and singing and helping her to stand when she wants to. Every minute is torture; every second is precious. When she is able, she and I shuffle around the sun deck at the ElderJail in which you may have briefly visited her (or not) and in which she and I have spent hundreds and hundreds of hours together.

If you did drop in to see her, did you notice some of the flowers in the planters around the deck at the “care” facility are the same kinds Mom nurtured in her own window boxes, the ones she loved to water in the early evening with her green watering can and rain collected in the old wooden barrels at the southeast and northwest corners of the big red brick house on the hill where she lived for more than 40 years? You didn’t? What a pity!

She loves begonias, geraniums, petunias and impatiens. She had cosmos, daffodils, daisies and phlox in her garden. We joyfully rediscover flowers each time we explore the sun deck at The Home which is not really a home at all. It’s just a necessary evil on the road to her final destination.

I know by the way she rocks her body back and forth when she wants to get up and get moving, and by the look on her face and the feel of her hand in mine if she is able to stand unassisted. Mostly she’s not, so I am by her side whenever I can be. I know by the way she pats her hair that she loves the fact it’s “done,” and by the way she touches the cut on her face that it worries her.

I know the colour and brand of her nail polish because I buy it. I know when she had her last manicure because I did it. I know when her sleep is medicated and when it’s natural by the slackness of her mouth and the sound of her breath.

I change her “diapers” and clean her bottom. I recognize her wheelchair by the stain on the seat. When she needs me to, I feed her like a baby. When she doesn’t, I celebrate that she can lift a fork to her mouth and feed herself. I have cried with her, comforted her and felt the sting of her acid Alzheimer’s tongue. I help her engage with her shrinking world, not simply exist in it.

I see her in ways you can’t even begin to imagine. I see us reflected in the mirror of each other. I pray for her to stay and go. I watch her look death in the eye and grab life by the horns every day despite her illnesses. I am her cheerleader, her advocate, her voice. I am her child/mother. Our souls are linked; our destinies are intertwined.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. I have experienced first hand the effects of decisions I’m told are in her best interests, but which in reality have little or nothing to do with her health and well-being and everything to do with convenience, reducing costs and conserving her wealth for someone else’s use once she’s gone.

The effects of the decisions in which I have no say include the cuts and bruises about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. Neither do you know my mother or hers.

Next time you run into me on the street or at the theatre or outside the care facility or even inside the care facility and are tempted to comment, judge, berate or advise me on aspects of my mother’s condition or her care or my role in her life, please consider all of the above and mind your own business instead of mine.

If and when I want your advice I’ll ask for it.

With gratitude,

Susan

P.S. to all my beautiful friends and acquaintances worldwide who give me oodles of unconditional love and support and share their wisdom and experiences with me when I solicit their input: thank you, I love you and I am so grateful you are here to hold my hand <3

Take my short survey on behaviour here.