it doesn’t matter if they know you or not

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43781263 - let it go text on hand design concept

Mom first began not recognizing me in summer 2010. Sometimes, when I came back to the house after a run or a trip to town, she would greet me like I was a visitor rather than her daughter. I saw the uncertainty on her face and in her eyes: she knew she knew me, but she couldn’t quite put her finger on how or why. I was familiar, but our relationship was a mystery.

Who is she?” she must have asked herself. “She knows me, so I must know her, but I don’t. Who is she? Think. Think. Think!” Five years later I would develop a list of 20 questions to ask when a loved one doesn’t recognize you anymore; and in spring 2017 I composed an alzheimer parent’s poem.

One afternoon shortly after my return in 2011, Caroline (an earthbound care angel) and Mom were going to town to do some shopping. As they walked down the path toward the driveway and the car, Mom turned to Caroline and asked:

“Who’s that girl in the house Caroline?”

Caroline answered in an even tone without skipping a beat: “That’s Susan. She’s your daughter.”

“Oh,” Mom said. The two of them continued down the path as if such a question and answer were as normal as blue skies and green grass, and I stood at the door happy and secure in the knowledge Mom was in good hands, loving hands.

Whenever Mom didn’t recognize me in the early days of the disease she hid it well, just as she had other symptoms for longer than anyone knew. But she didn’t hide any of it well enough for me not to notice. I saw the subtle changes, the cover-ups and the coping strategies.

It must have frightened her to have someone whom she didn’t know breeze into her home like they belonged there. She must have been worried too by the other cognitive losses she was experiencing. But she didn’t let fear get the best of her. Not ever. Not even when she breathed her last breath. Her bravery and determination still astound me, even though she’s gone.

When Mom was still alive, “Does she still recognize you?” was usually the first question people asked when I told them my mother had Alzheimer disease. Millions believe that individuals with dementia cross some kind invisible line, fall down some crevasse into oblivion or simply cease to exist when they can no longer identify those closest to them. I was one of those millions. I thought when my mother didn’t know who I was that she–or at least the person I knew as her–would be “gone.” If she didn’t remember me I reasoned, it wouldn’t matter if I were there or not. Somehow she wouldn’t be Mom anymore, I concluded.

I was wrong. I now understand that self eclipses a well-functioning brain and a healthy body. There is so much more to our selves than muscle and memory. It’s possible to play hide and seek with the hints, whispers and fleeting bits of spirit, grace and knowing beyond Alzheimer’s skin and bones. With practice, care partners can tap into levels of patience, playfulness and wonder in themselves that they might never have dreamed possible. We can all learn to look and listen slowly and carefully, and to communicate with people who live with dementia at their pace, in their space. Rushing or wanting a different reality is a waste of time and energy.

Perhaps others thought my answer to their question about whether Mom recognized me or not would help them gauge the level of my suffering and the measure of pity or compassion they should have offered in response. I appreciated their good intentions. But, while having their loved ones recognize them matters a great deal to many  caregivers, it wasn’t important to me.

I was lucky. I was able to let go of that part of my ego, and thus save myself a lot of grief over the decline in Mom’s capacity to remember, think, and do. Being doesn’t require remembering, thinking or doing; and recognizing love and compassion doesn’t require recognizing individuals. It helped that I saw Mom as an engaging, vibrant and fully human being rather than a lesser version of herself or worse, an empty shell. I saw possibility and potential in her right up until the moment she died and beyond.

I’m one hundred percent convinced that Mom felt how I saw her, and the fact that I saw her as “more” rather than “less than” helped her to live her best life until the end.  Mom may not have always known who I was, though she often called me by name even late in the disease, but I always knew her. And I know myself. It was, and still is, enough.

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Image copyright: dolphfyn / 123RF Stock Photo

20 Comments

  1. You’ve always been an inspiration to me. From way back in Dubai! you brought a breath of life, of joy, of fight to a gloomy time I was going through. You care. and that’s so precious.
    Reading about your experience with Alzheimer’s disease brings hope, encouragement to people going through the same upheavals, having to make tough choices. it’s food for thought. I think you made great choices.
    God bless you and your mother.

  2. My Grandma (who will be 93 in July) is in the beginning stages of Alzheimer’s.

    Sometimes, my heart breaks as I answer the same questions over and over in a single hone call or visit. I’m the one who takes her to her doctor appointments and out shopping (aside from my Aunt, whom she lives with) so I’m the one who sometimes bears the brunt of her anger.

    She will tell other people that I forgot to call her or take her out. After a particularly stressful phone call with her in which she berated me for not calling her “for months” (I had taken her to lunch the day before), I called my father and stepmom. They called my Nana and she told them how horrible I was and how I always forget her.

    I cry a lot about it.

    I still continue to help her and see her for mostly selfish reasons. I love her, who she is now and who she used to be, and I love spending time with her. I love her stories. I am blessed to still have her and feel even more blessed my daughter got to know her (my Mother passed in 2000 from MS – 7 years before my daughter was born).

    In some ways, I almost feel like I lost Nana already so I cherish every second I get to spend with her.

    • Dear Tina B,

      I know exactly how you feel. My Mom said mean, nasty and hurtful things to me when I cared for her in her own home.

      I know it’s really hard, but I found the most helpful thing for me was to tell myself that it wasn’t my Mom talking, it was the disease talking.

      Also, what I do now that I know more is just agree with her. I say things like: “Yes, you’re right Mom, I should come to visit more often. I know you are disappointed and angry at me, but I will try to do better now and in the future. You deserve the best.”

      It seems to help sometimes. Maybe it will help you too.

      You are doing an amazing job with your Nana and you will never regret the kindness and compassion you show her. Keep up the good work and know in your heart you are doing the right thing. <3 <3 <3

  3. Kathleen Davies on

    I’ve been in Winnipeg with my Mom this past week. I do feel fortunate she still recognizes me- but I’m now one of the few. Her memories are quickly disappearing as is her ability to express herself and identify everyday items. She now takes whatever fragments of her life she can remember and melds them all into a new story. I no longer try to keep her straight on the facts or even the people – there’s really no point. What is important is that we are still able to spend time together and share simple pleasures- like a good cup of coffee and a Dad’s cookie. The best thing we can give is our time, love, patience and support. So even if Patty doesn’t always recognize you Susan, she does in her heart know and appreciate you as the special daughter you are.

    • “What is important is that we are still able to spend time together and share simple pleasures- like a good cup of coffee and a Dad’s cookie. The best thing we can give is our time, love, patience and support.”

      100% right Davies! <3

      And we're lucky to have the resources to be able to do what we do...

  4. when i was going to the episcopal church in alameda, CA, there was this woman that i had known for many years. after service, during our coffee hour, she would always come over and chat with me.

    then she disappeared and wasn’t coming to church any more. after a couple of years, all of a sudden there she was at coffee hour again. she saw me across the crowded room and rapidly walked over to speak to me.

    it didn’t take many minutes for me to realize that she had alzheimer’s, but she was my friend, so i just continued to talk to her. ten minutes later her daughter-in-law came up behind us. she had tears in her eyes. she just stood there silently while my friend and i talked. then her husband showed up – it was obvious that he had been crying.

    a few minutes later they all left and i was just standing there deciding what to do, when the daughter-in-law came back to thank me for speaking with her MIL. i told her we had been friends for years.

    then she said something profound – ‘my MIL doesn’t recognize either myself or my husband anymore, but every time she sees you at church she not only remembers your name but she remembers that the two of you have been friends for years.’

    blessings to you for being such an awesome care partner.

    • oh annie,

      thanks for that beautiful story. how glorious she remembered you. i hope their tears were tears of happiness that she remembered you and not tears of sadness or bitterness that she didn’t “remember” them.

      i am reminded each day that mom knows me and “sees” me perhaps more clearly than she ever has even though she may not be able to articulate it and even though she may not recognize me.

      blessings to you too and TYSM for your comment which is a great gift today on my birthday <3

  5. Thank you so much for educating me and so many others. I think I can make this journey with my loved ones with love and compassion.

  6. You are so amazing. Your stories always touch my heart. The ending of todays’s was perfect. Thank you and have a blessed day.

    Hugs and love,
    Karen

    • Hugs and love to you Karen for leaving a comment – there are plenty of days when I don’t feel in the least bit amazing and today is one of them. Your words helped cheer me up <3 XOX Susan

  7. I wondered where your mother was on the spectrum. I too didn’t realize that it comes and goes until it is gone for good. Last March, while visiting my mother with my (then) 23 year old son and 18 year old daughter, my mom forgot who I was. It was at dinner at a local restaurant near where she lived with he husband. It was weird for sure, and I will never forget the look on her husband’s face. He was appalled.

    My kids each reacted so differently. My son was an emotional mess and left, with his girlfriend, as soon as possible. My daughter convinced herself that my mother was kidding around. She refused to hear any other explanation, even though she knew of my mother’s diagnosis.

    I was sad, but not shocked. Given the weight of our relationship over the years, I guess it made sense to me that night. Funny thing was that my mother apologized the next day and since then she has been kind and loving and sweet to me–something I never thought I’d see.

    Now, on the phone, I can tell when she is confused. I try to be steady, give her info and just keep an open heart to her. It is funny, but I have never felt closer to her as I do these days. Go figure.

    • The way I see Alzheimer’s time and symptoms now is like a sphere rather than a continuum or spectrum. Mom doesn’t greet me like she used to, but she often calls me by name after we’ve been together for awhile.

      I don’t know anything about the physiology, but I believe the brain must compensate in some ways for the loss with “enhanced performance” in other areas even as the degeneration goes on.

      Yes, sad, but not shocked is a good way to capture it, because one knows it’s coming.

      An open heart is a wonderful thing to offer. And yeah, go figure for me too – that part is a blessing. A real blessing…

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