Care Partnering, Life & Living, Love

an open letter to people who think they know better

amazingsusan


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.

Mom touches a wound on her face (2014)

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 ❤

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

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Published by amazingsusan

Writer, blogger, poet, motorcycle rider, dementia care advocate.

53 thoughts on “an open letter to people who think they know better”

  2. You will probably never reach the people to whom this is directed because, as you say, they haven’t lived it. To those of us who have had even one of the experiences you are going through,we know. We support, love, admire you, cry with you, reach out to you across the distance and pray that yours and your Mum’s journey will come to a peaceful, loving conclusion and leave both your souls content at the bond you have had.

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    1. Yes, Lynn, you are so right and how eloquently you have expressed it!

      And thanks for much for all your support. I know you above all people know, and I feel you holding my hand from the other side of the world ❤

      Love you and thanks again.

      P.S. Although those to whom it is directed will likely never read it as you astutely observe, it felt cathartic and cleansing to write it. Also, I know many who will read it will say “I’ve been there. I know that,” whether the experience is linked to Alzheimer’s or something completely different. Those who identify won’t feel alone in their pain and frustration. Maybe they might even gather the wherewithall to tell the busybodies in their lives to get stuffed LOL! XOX

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  3. Hurray! You are so spot on with this. I was just thinking about a time in the hospital with my dad who had been yelling and calling nurses horrible profane names and I had a nurse turn to me and say, “He’s doing that because someone must be abusing him.” I was irate and felt like repeating my dad’s profanity toward her. I took a few deep breaths and said, “No, he’s speaking that way because he has Alzheimer’s and perhaps you need training as a healthcare professional to understand this.” Even in the world of healthcare, it’s misunderstood. So the people like you and I, who get verbally abused by our parents and absorb it because our understanding of their disease and compassion for them as our parents, are then abused by society because of their ignorance. Thank you so much for this piece.

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    1. Tina,TYSM for your comment and for your compassion for your father and the nurse who misunderstood him.

      I’m reading a FANTASTIC book about changing the way we see dementia and caregiving: Dementia Beyond Drugs: Changing the Culture of Care

      I wish I had known about it four years ago. On the other hand, perhaps this journey of Mom’s and mine was meant to be for a reason… Either way, I highly recommend the book. Based on your comment, I think you would get fired up by the changes proposed by the author who is a “disciple” of the Eden Alternative, a “new” care model for the elderly. This is the kind of experience I want when Alzheimer’s comes to hold my hand.

      I learned of Dementia Beyond Drugs from Martha Stettinius, the author of Inside the Dementia Epidemic: A Daughter’s Memoir
      which I also highly recommend. It’s a great read and includes lots of resources.

      Thanks again for your comment and I hope you will stay with Mom and I moving forward.

      XOX Susan

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  4. Thanks for sharing these personal insights. Although, I spend time in a memory care facility engaging with the residents, I have never had to walk in your shoes. I know several family members, and I do catch myself wanting to ask questions or provide advice. I’m pretty good about respecting their situation and your article will help me be able to empathize better. Thanks Susan.

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    1. Thanks Mike, I appreciate your comments and the fact that you follow my blog ❤

      Are you familiar with the Eden Alternative? I think it represents and positive way forward with respect to elder care… your thoughts?

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      1. Susan,I’m slightly familiar with Eden but haven’t really looked into it. I just signed up for their newsletter so that I can follow them and learn more. I personally want to help those family members that are caring for a parent in their private residence. We can help them learn how use a holistic approach to keeping their parent enriched, safe, and well. So the Eden project fits right into my vision. Thanks.

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  5. Dear Susan,
    I have been following your writings detailing your journey with your beloved mother with sympathy and support. After reading today’s posting I feel compelled to finally express my sincere admiration for all that you do to enhance your mother’ s well being and ease her suffering. As well as being known as “Amazing Susan” you are absolutely an amazing daughter!!
    Your open letter to everyone…..it should be published. You have eloquently described your painful reality which also speaks for those needing to deliver similar messages to the well intended. Your letter would have benefited me a few months ago when I was unable to effectively communicate my “reality” to siblings living at a distance.
    You and I met once through a mutual friend shortly after your return to North Hatley. I look forward to knowing you in the future. Please know that my thoughts are with you and your mother.

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    1. Dear Sue,
      Our mutual friend mentioned to me that you have been following the story with interest, empathy and love. Thanks for that and for your comment – sometimes blogging is a lonely endeavour! Just like caregiving for an Alzheimer’s person is 🙂 I’m afraid no one quite “gets it” until they’ve done it.

      I too look forward to reconnecting and sharing experiences and wisdom. In the meantime, thank you so much for being out there listening, knowing and sending positive thoughts to Mom and me ❤

      X Susan

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  6. Thank you for sharing this difficult and rewarding journey with your Mum.
    Please add me to the long list of those who support you and admire you. You are indeed amazing, Susan.
    With love and hugs, Nick

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    1. AwwwwW Nick. A blast of support from the past! TYSM for your comment and please keep following and sharing the journey so Mom’s and my experience can make a difference in the lives of others.

      With love and hugs from my side too XOX

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  7. We have been caregiving since 1980.First,my wife’s father for 14 years from stroke;then my mother’s aging issues during the same time;finally,and for 10 years,my motherinlaw from Lewy Body dementia.
    Your open letter accurately portrays the love,fear,hope,anger and the multitude of other feelings that can only be expressed by those
    who have been through this crucible. It’s actually comforting to know our experience was not unique.
    thank you

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  8. Thank you, Thank you for writing this. It gives me inspiration. We are very blessed that my Momma is in a very loving, safe memory care. But it isn’t ideal of course, and I sometimes want to take her and just run away. And then I want to turn around and take her back. This is a double edged sword and not for the faint of heart, but we do the best we can. I wish more family and friends would visit her, and I so understand how difficult it is for you, but how many meals did she feed you over your lifetime, oh and didn’t she provide you with housing along the way too? Just a question, not judging. My Mom will be 90 next Monday and she has been missing my Dad for 7 years and struggling with dementia for longer than that. I Love her and I’m so blessed that she is still here to hug and kiss, but I miss her too.

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    1. Thanks for your comment Marie.

      There are so many double-edged swords in life and in this Alzheimer’s journey in particular. I wrote this poem awhile ago about the pain of watching my Mom suffer, about wanting her to be free and yet also wanting her to stay with me a little longer:

      a daughter’s prayer to god

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  9. Congratulations and Thank you for sharing this beautiful open letter. Your “open letter” certainly needed writing. For many years I worked with clients at various stages of Alzheimer’s and other dementias. Only those who’ve walked in your shoes can remotely understand what a bittersweet journey you’ve undertaken. Kudos and much love.
    Marie

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  10. I love you unconditionally. I support you. I have been through this with Nana, aunt and uncle. Every word you write is true. Every feeling you have is authentic, sometimes raw and sometimes nuanced with the beauty of your spirit. Beauty and suffering coexist simultaneously and you’re living it, ever so bravely. But you are not alone. I stand with you in spirit and in love.

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  11. My mother was bed ridden for 6 years before she passed way 2 years ago of acute diabetics…we had to feed her for 2 years as she had stroke and was partially paralysed..Mothers are Mothers..no words can express their unconditional love for us from the time we are in their wombs to were we are today..When they suffer the vulnerable side of the nature/diseases/sicknesses..we need to become their strenght reminding them of the good life they have and blessings of having us to take care of them! After all bodies are bodies …its the spirit that counts and bounds us forever..I love your mum and all mothers out there! May God bless her always!

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  12. I have just stumbled across your blog but will be following all your posts. I was a caregiver to both my parents (one of which had Alzheimer’s) and I can relate to all the HELP (?) that others like to offer – or let me rephrase that – the OPINIONS that others like to offer because the word HELP is not really in their vocabulary.
    I appreciate you saying what I’ve always wanted to. Thank you!

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  14. Bless your heart Susan. Your words are so true and struck a chord with me. My husband and I took care of my diabetic and cardiomyopathy father and helped with both his parents, his father with colon cancer and his mother with Alzheimer’s. Lost my Dad, Mom and his Dad within 6 weeks. His Mom 10 years later. My father had his left foot amputated because of the diabetes and fell a lot. His Mom also seemed to have a few balance issues. I know what you mean about a lot of unsolicited advice. Bless you for all you do. I would do it all again. Have a blessed day. Karen

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    1. Bless you right back Karen ❤ It’s a difficult journey, but a worthwhile one this life of ours… ❤

      Thanks for sharing your experience and your kind words. I invite you to follow our story as it unfolds.

      XOX Susan

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  15. Hi Susan,
    I read about your blog over at Nana Diana’s today. First off, I am so sorry that your mom is suffering with Alzheimer’s, and how difficult each day must be for you both. My own mom has dementia as well, though she’s not yet at the stage your mother is. She thankfully still knows who we are, but as you say, each day is a challenge and oh so difficult. Dementia is such a cruel disease. Thank you for sharing with us, and for telling it like it is. No one has the right to judge or offer up their unsolicited advice, as they never have walked in your shoes. Take care!

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    1. Hey Donna,
      Thanks for dropping by and taking a look around. I wrote https://myalzheimersstory.com/2014/05/14/a-daughters-prayer-to-god/ in the spring of this year (2014).

      Mom has since recovered a good amount of her physical capabilities and although she continues to decline, we still having amazing moments like this one: https://myalzheimersstory.com/2014/08/27/the-most-important-thing-to-remember-when-you-hit-a-rust-patch/

      Mom knows me almost every day, which is such a blessing.

      Also, what I have learned is that while the disease is often described as having definite “stages,” my experience with Mom is that the stages are not well defined and there are moments of astonishing clarity and awareness even in the late stages.

      Yes, each day is a challenge, but I hope you are also able to find some joy and laughter and to sing and be joyful too: https://myalzheimersstory.com/2014/09/02/5-rewards-i-get-for-taking-care-of-my-alzheimers-mom/

      As for the unsolicited advice, they can stuff it LOL! Thanks again for visiting, I hope you do so again ❤

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  17. Oh yes- I remember those advice givers so well. If only….you should…..did you….did they….does she…. Those that are not affected by dementia and have not had the stain of it upon their hearts have NO IDEA what it is like. They have NO IDEA what it takes out of you. They have NO IDEA of the pain they unwittingly inflict on you by word or deed. Thank God they don’t know for they are the lucky ones. xo Diana

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    1. Yes Diana, you are so right. And it must have been so much harder for you with your Mom at that time. There’s much more known about the disease now, still not enough, but a lot more than was known when you were caring for your her AND your small children. I just can’t imagine how you managed… ❤

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  18. I had to go through that with my Dad. People don’t realize the struggle a caregiver goes through just to convince your parent that they need a diaper now; that they need a walker instead of a cane. They don’t want to admit to, or forget, they can’t do certain things anymore so they end but with bruises or cuts. But they are so fragile now, people don’t realize they can bruise so easily. Nobody know what it’s like to walk in those heartbreaking shoes until they do. I wish you strength through these tough days and to let you know there are those who understand and applaud your efforts.

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  19. Dear Susan

    You are an inspiration to all of us women, you have given us courage, hope and faith, showing us how never ever to give up. Mostly you show us how to smile even during the worst of times.

    You shown us what love is all about, what caring can do to a person. I am in awe of you. The patience you have is remarkable the compassion you hold is amazing.

    You Susan amaze me everyday.

    I wish you more strength and courage and may the great spirit bestow on you good and great things.

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    1. Audrey, those are kind and generous words. Thank you from the bottom of my heart. I honestly think we have more power and compassion than we know if only we can find the way to reach inside and access it. Still, I often feel frustrated and powerless and I surprise even myself with my capacity to keep fighting even when I feel like giving up. All of this for some purpose of which I am not yet completely aware. Maybe I never will be. But there is a reason, even though it may be hidden. And I am SO inspired by Mom’s courage and determination – she blows me away. Thanks again for your support and your wonderful wishes ❤

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  20. We all know that a person with Alzheimer’s is going to progress and not necessarily in a good way. But if we can “progress” with them, we can see the person that is still there hidden deep. We can still see the Monumental Momentary Miracles that will bring us joy, even if riding on the shoulders of grief and sorrow. I never really understood what “live for the moment” meant until Gregory’s Alzheimer’s had progressed so far that I had to put him in a memory care facility because I, try as I might, could no longer provide the care he needed (needs.) Now I have a team of people helping me care for him. Every now and then he will hurt himself, or get bruised by a caregiver, or get ill, or be out of sorts. But I ride with that and the next day, the sun always seems to shine again, although sometimes with a different intensity! By am I rambling? Your open letter was well said! P.S. How do you get so many people to comment to your posts? I get lots of readers on mine but very few posts. What is your secret?

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    1. “But if we can “progress” with them, we can see the person that is still there hidden deep.”

      Yes Michael, that’s been my experience also. I see my mom very clearly. I know you enjoy poetry, and I wrote this poem about exactly that:

      I See you

      I don’t know about getting people to comment on the posts, it just seems to happen, or not!

      I do think it’s helpful to comment on other people’s blogs and posts. On the other hand, some people just never comment. I have a friend in the village where I live who tells me every time she sees me that she doesn’t miss any of the posts from this blog, and that they are super important to her. But she has never left a comment. So it’s a mystery to me – your guess is as good as mine 🙂

      Also, I have left several comments on your blog, but I don’t get any notification of answers to my comments. I don’t know why that is. But if people comment, I think they want to know that their comment has been seen and even better replied to. I don’t use the same blogging platforms you do, so I don’t know how you would address that.

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  21. Thank you for speaking to my soul. I lost my mother in October 2014. I experienced all the things you mention and then suffered from being judged by people. People who do not understand what my mom and I talked about when I was giving her a bath or a manicure. Thank you for you blog.

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    1. Marija, when I wrote it, I didn’t realize it would resonate with so many. So far it’s been viewed more than 5,000 times. That’s something for this little blog and I think it says a lot about what goes on out there…

      Thanks for your support ❤

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  23. Since obstructive sleep apnea (OSA) is a known treatable cause of Alzheimer’s Disease, why not have her tested and treat with CPAP (when it proves she almost certainly has it). Like my father, she may refuse it (he was claustrophobic), and she may be too advanced to expect miraculous results, but it’s worth a try.

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  24. Just going with the flow and reading this now – it made me laugh that the first comment was “unsolicited advice” from a reader. Oh, the irony we encounter as we go through life… this is beautifully written, Susan, I am going to share…

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