mom-jess-86Here I sit on a Tuesday evening, legs covered in my favorite cozy blanket and fire crackling in the chiminea. Middle of August in Ohio, and the thermometer reads 72 degrees. The sun is beginning to set, and the crisp air smells and feels like fall.

Making Sense of the Senseless

I know exactly what I want to write, yet the words won’t come, so I gather some more wood for the fire, check to see how my brewing tea is coming along, and watch the dog putter around the yard. Still no words… just lots of jumbled thoughts and feelings that I can’t seem to cobble together into anything that makes sense.

This week marks eight months since my mom’s passing. That’s 32 weeks, 240 days, 5,760 hours – give or take. In a way it seems like an eternity, yet wasn’t it just yesterday that I sat next to her bed holding her hand, stroking her head, and praying for God to tell me what to do to bring her some peace. Those last three weeks were sheer hell – there’s no other way to describe it. No human being should have to suffer the way she suffered.

With each passing day, I realize even more just how much our Alzheimer’s journey changed my life forever. I know now that it never really ends. You go in as one person, and come out as someone completely different. The things that used to matter BA (before Alzheimer’s) seem so irrelevant now.  You’ve finally figured out that you’re not immortal. When they say, “life’s short,” they mean it.

Take the Good, Leave the Bad

Oh how I wish I had known nine years ago what I know today. There are so many things I would have done differently, but we do our best with the knowledge we have. I remind other caregivers of that constantly to help ease the guilt that comes naturally with the role. Yet somehow, it’s difficult for me to apply the same logic to my own situation.

Long ago, someone told me to “take the good, and leave the bad.” I can’t think of another example where that is more applicable. When you love someone with Alzheimer’s, you witness the unthinkable, and you feel pain the depth of which you never knew possible. Dwelling on those things, though, would ultimately destroy you.  So you focus instead on the fact that the experience taught you to love more deeply than ever before.

Given a choice, no one would willingly embark on an Alzheimer’s journey, but when it’s over, you’re left with newfound compassion, perspective, and purpose.  It gives you an appreciation for the little things that perhaps would have gone unnoticed before. It brings you together to form an unbreakable bond with people you would have otherwise never met. You will help some of those people, and some of them will help you. Neither of you will ever be the same.

When It’s All Said and Done

take-the-good-leave-the-badThe truth is, I loathe this disease with every fiber of my being. There are days when the entire journey still seems like an awful nightmare, and I can’t believe my mom is gone. It’s been nine years since I’ve been able to sit down and have a real conversation with her, and that makes me downright angry. But focusing my energy there would be a mistake.

“Take the good, leave the bad.” The unlikely friendships, a new depth of emotion and understanding, an unspoken – and unparalleledbond between my mom and I, and a reason for existing here on earth unlike any I’ve experienced aside from being a mother myself.

I wouldn’t have chosen it, but at the end of the day, I’m a better person for having traveled that horrific road. And I’m stronger than I give myself credit for. You are, too. Hold onto that – let it carry you through your darkest days. 

19 Comments

  1. Jess

    And THAT is exactly what Gram would’ve wanted you to get out of the situation! Well written & so true.

    • Ann Napoletan

      You’re right about that, Jess. The tears come often, and she would understand that, too. But when everything is said and done, she would want us to take the lessons and go forward with them. Love you so much. xo ~Mom

  2. Elaine Mansfield

    Your words shake me down to the core. I watched my mom suffer with Alzheimer’s for 10 years and lost her in this way, but was grateful that a few years before her death, suffering ended and became a quiet inward soft baby girl. She didn’t open her eyes when I petted her, brushed her hair, or called her name, but she was at peace and flowed into death with no struggle. With my husband and cancer, we were together and he gave me emotional support and love as I gave him emotional and physical support and love. But it was horrible watching him suffer as he did. It still made so much difference to both of us that he was mentally with us to the end. But mortality is just hard, no matter how it happens. The duration of Alzheimer’s makes the suffering unbearable.

    I’m with Jess. You got so much from this horrendous experience and share all you learned to help others. Now I’m off to share your post. Thank you, dear Ann.

    • Ann Napoletan

      Thank you, Elaine… you’re right, no matter how it comes, it’s difficult. One would think 9 years would allow for plenty of mental and emotional “preparation,” but those years don’t make the final farewell any easier or the void any smaller… Much love you you… ~Ann

  3. Martha Stettinius

    A very moving post, Ann, thank you. I have shared it widely.

    Martha

  4. Kathleen M. Rodgers

    Dear Ann,

    You found the words. They did come, and you rendered your story so beautifully.
    Thank you for share this with us.

    Kathleen

  5. Linda Austin

    Hello Ann, I found your post through Martha and can relate so well to your words. My mom passed away ever so gently 10 months ago from Alzheimer’s. I, too, found the Alzheimer journey to be very emotional, and how true that love can grow so deep when you care for someone who is suffering and has become helpless. The depths of tragedy and love and the beauty of the smallest moments made me try to capture that permanently through poems. There was great pain and despair, yet exquisite love I always want to remember. Yes, take the good, leave the bad. My heart is with you.

    • Ann Napoletan

      Beautifully said, Linda. And, it’s so wonderful to connect with people who understand. I suppose logic might dictate that once the nightmare ends, you would want to lock it all away and never think of those years and the unbearable pain. Yet somehow, it’s quite the opposite. I’m so thankful that I’ve kept blogs through most of my mom’s illness. As difficult as some of them are to read, I need them – they’re my connection to the past… to her… It’s nearly impossible to explain, isn’t it? Sounds like your poetry does the same for you. Much love, Ann

  6. kathy k

    thanks for sharing your journey….. i am experiencing unconditional love, especially when mom and i sing old songs together…i feel like i am here for her just as she was for me when i was a child….unconditionally…if i dive into the atzheimer reality it isnt so easy-for me, however my mom is happy and safe, and i have no regrets

  7. Pam Perry

    So well written, my mom lives w/ this gut wrenching illness illness. Thank You for sharing!

  8. Pam Perry

    Well written Linda, My mom has this gut wrenching illness. Thank You for sharing!

  9. Jessica Price-Parrott

    This is BeAuTiFuL! Everything you wrote, I have felt. There is nothing like a mother’s love. It makes me so thankful I am a mom. When I work through my sadness…really clear my mind of sadness, anger and guilt~ I can hear my mom. I can feel my mom. Sometimes I need to feel those heavy feelings. It is all part of the grieving process, but once I work through them I always feel closer to my mom. Moms ya gotta love them 😉

  10. Susan

    Hi Ann
    I am sorry for your loss; but immensely inspired by your insight and wisdom.

  11. Tom Frommer

    Ann, I can identify with your feelings and you stated them very well. Lost my mom a little over 10 months ago. My journey was not nearly as long as yours. The love, frustration, mutual suffering, and compassion is intense. My resolve from my experience is to support others. Thanks for your words.

  12. Mary Johnson

    Deeply moving to the core of our souls, and a testament to the best in human spirit.
    I can only hope to emulate even a fraction of your depth and quality of what it means to care.

  13. Ella

    Wonderful reading, thank you again Ann! This disease is a terrible one, as so many are, no one likes to see a loved one ill. With any illness there’s always that uncertainty on what kind of day it will be, a good or bad one, and that can change everything. If you care and love, illness affects all in someway, it just does. With my brother there are changes happening constantly it seems, always something new. Don’t know if he’s in denial still, or just not giving up the loss of the old versus new, he knows something isn’t right that I believe. I /we make changes accordingly in what we do and say, it’s makes things easier for all. Cliches, “take the good leave the bad,” “the new normal,” are spoken by many these days and there’s truth to them. “Easier said than done,” but we should try to not feel guilt, back-track, be so hard on us. We must try to be kinder to ourselves, remembering what we do, when others may chose an easier path. Compassion, empathy, patience, just a few attributes needed for a caregiving role and an abundance of love. You were there for your Mom, loving her so, she knows that. Days can be bleak, I know, and I will hold onto your kind words. We must remind ourselves that each day is a blessing! Faith and prayers prevail. God Bless You and All Caregivers!

    • Ann Napoletan

      You’re so right, Ella… it takes constant reminders, but caregivers should be kind to themselves – we all do our best. Time marches on, things change, and we learn as we go. That’s just life, I guess. Sending blessings to you and your brother – he’s so fortunate to have you. xo ~Ann

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