an open letter to those who think they know better

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Dedicated to unappreciated care partners worldwide. Thank you for all you do.

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

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.”  I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

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

The effects of the decisions in which I have no say include the cuts, bruises and other conditions 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. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition  or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.

Regards,

Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand <3

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13 Comments

  1. Pingback: the shame belongs to someone else

  2. I cannot thank you enough for this forum, you get it! A life no one understands until they have walked it. I smile and nod when people that have no idea give advice. Little do they know I’m hanging on by a thread.

  3. So touching and sadly, so true.

    This is the attitude i have worked relentlessly for 35 years to change – that malignant philosophy of care that is nothing more than neglect pure and simple – the ageist, stereotypical, cruel, inhumane attitudes that others feel they know better must cease, so our population living with dementia are treated with the respect and value they deserve.

    Every single person is an individual in their own right. We are all a product of our own personal life transitions. Thus, if we do not know the person beyond the condition, there is no way in the world we can truly care for them in a way so they may continue to live life in an uplifting, joyous way, thrive, blossom, and not be plagued by the loneliness and despair poor care creates.

    Maintaining personhood, and the place each person holds in the world, maintains life!!!!

    L.xx

    • “Every single person is an individual in their own right. We are all a product of our own personal life transitions. Thus, if we do not know the person beyond the condition, there is no way in the world we can truly care for them in a way so they may continue to live life in an uplifting, joyous way, thrive, blossom, and not be plagued by the loneliness and despair poor care creates.

      Maintaining personhood, and the place each person holds in the world, maintains life!!!!”

      YEEEESSSSS!!!! Bang on Leah!

  4. Lorrie Beauchamp on

    Made me cry. So very true, so very poignant. Yes, all my siblings mean well, especially when they give me brilliant ideas about how to make my parents’ life more “fun” – take them to movies! Go for ice cream! Yes, nice ideas, just not that easy in reality. I appreciate their love and support, and sometimes don’t know how to stress how complicated caregiving is, without sounding like a wanky whiner. Which I’m not. Thanks for pointing this out, and for putting it in the right perspective. I’ve never come across people openly critical of my caregiving, but I can sense that it would be horribly cruel – what right have we to judge others? We’ve become such a bullying, critical society that it behooves everyone to look very closely in the mirror.

    • Thanks Lorrie, I’m glad the post touched your heart. It’s exceedingly difficult for non-caregivers to understand what it’s like to be the primary care partner to someone who lives with dementia. It may even be impossible. It’s gratifying to know that some people try.

      However, online forums and support groups are rife with care partners whose family members either do not participate in giving care, who do not support the primary caregiver, and even, sadly, who actively try to make the primary caregiver’s job harder than it already is. I know it sounds inconceivable that people should do that, particularly family members, but it happens. This places additional stress on care partners, who, as you know from your own experience are already stretched beyond most people’s capacity to cope.

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