No one steps into the world of Alzheimer’s with aplomb and grace, knowing just what to do. We lurch into the minefield of a war without possibility of victory or truce, pleading for an advocate to help us avoid stepping on bombs. Then we find that only surrender is possible, only blood on the sleeve. Yet on the battlefield of this disease there is a way to dismantle the bombs.
We who are the family of those who suffer try to placate and offer solace, but we are also victims. There is no manual with step by step procedures. Yes, there is information, and you should avail yourself of all you can find. But it is likely to show a huge blank in just the area where you need advice, because the person we love is not a perfectly fitting cube in a bin.
If we are very, very lucky, one person steps up and says, “Let me help you find a safe way forward.” I had the comfort of that person’s presence, someone who showed me strategies for dealing with behaviors I didn’t understand and a parent I didn’t recognize, one who didn’t recognize me. Now I strive to be that person for others. I am no expert, not a professional in the field, but am good at directing. If you have questions, ask, please. I can show you the way.
You will still sob and raise your fists, you still won’t sleep at night. But you will bring joy to the person you love and sometimes you will both laugh. It will be those moments you live for.
The end is tragically assured but the journey is everything.
Just a thought 53
Image of aged woman courtesy Max Pixel
Image of aged man courtesy of Pixabay
Sharon Bonin-Pratt's Ink Flare 
Comments on: "The Minefield of Alzheimer’s" (28)
Yes, the journey is everything. Sometimes we feel we can do so little.
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Peggy, I think being as present with those who suffer is the best we can do – and it’s a lot.
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Yes, it is a lot.
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This frightens me beyond most any other disease. The pain isn’t physical–it’s inside. And no way to end it.
I do have a question you would know the answer to. This mightily bothers me so I’d appreciate your thoughts: Does the one with Alzheimers–your mom–know they are fading away? When they don’t remember stuff, does that hurt them?
Thanks Shari…
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Jacqui, you’re absolutely right about how and why this disease is so terrifying. What I’ve written about those who suffer with Alzheimer’s can be applied to so many people – they’re general observations even when occasionally they’re also specific to my mom. Because I made a promise not to write publicly about my mom, I’m going to send you an email about your question.
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yes, dealing with my mother’s Alzheimer’s and it is NOT easy. However, I’ve learned to treat her as a child and care for her the same way. That helps.
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Hi, Elizabeth, it’s nice to meet you here, though the circumstances of our acquaintance are sad. I understand the need to care for someone who suffers by doing so much for them – the decisions, the daily care, the conversations, the activities – as if we are now the adult to this person who must now be cared for as we would a child. However, I disagree about one aspect. They are adults, no matter how confused. When she was alive, I believed in treating my mom with respect by not humiliating her and making her feel as if she was a child. I altered my language and actions when necessary to protect her, but I recognized the adult in her and encouraged her to participate in her life as much as she could. Perhaps this is a slight difference in affect, not effect. I wish you well as you continue on this difficult path with your mother.
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Yes, I can see what you’re saying and thank you!
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Well said, Sharon. And in helping our loved ones along the journey, we do an act of kindness. The world needs more of those.
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We do, Jenna, and you know from experience. Sadly one day, everyone in the world will know from experience.
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what a huge undertaking you lovingly took on, dear Sharon…
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Thank you, Daal, but I was forced to advocate for my mother. She needed someone and I became that person. She and I grew much closer over her last years, as she was dependent on me, but at such a terrible cost for each of us.
You’re up late – are you still on Spanish time?
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lolol — you too? 🙂
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I’m always on Spanish time – and I’ve never even visited!
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life is one long siesta? lol
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I wish I could get into that practice – no, I have terrible insomnia.
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Shari,
My applause and respect for how you honored your mother in her last years. I can not imagine the toll it takes on you the caregiver. At some point the patient mercifully no longer understands what is happening while you watch, wait and hope.
Your mother was blessed to have you as a advocate and compassionate daughter.
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Thank you, Judy. You are always compassionate and I am blessed to count you as my friend.
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Shari, I know that you are that person. And the knowledge and compassion you have to offer will be of significant help to others. By sharing about your experiences you reach out a helping hand and I know it will make a huge difference.
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That’s exactly why I write about a condition that was so painful for my mom to endure and so difficult for me to navigate on her behalf. If one person finds something useful they can apply to their situation, it’s worth all the hours I’ve devoted to trying to identify the many aspects of Alzheimer’s. Thank you for your kind comment.
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Surrender is so important, isn’t it? It’s also so hard and frightening to surrender. To me, God really is a huge solace because I can’t imagine surrendering to nothing. It’s such a tremendous relief when we remember that we aren’t ever big enough or good enough to get everything right. It’s a daily discipline though.
On a smaller scale, I had the horrible experience of developing severe brain fog from lyme disease last month. I’d gone off the dietary rails and even had a few beers 🙂 this summer hoping I’d cured Lyme, but apparently I hadn’t. Anyway, the brain fog was terrifying. I seriously couldn’t remember doing things I had done — and forget about writing! But at least i have things i can do to get my brain back. Your poor mother! I imagine you were an amazing advocate and friend to her.
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One of the things that sustained me through the years of Alzheimer’s was my belief in God, that one day the souls of my mom and dad would be reunited. I have little interest in the details and no belief in what others tell me about how this will happen. Just knowing that my mom and dad will find peace is good enough for me.
Lyme disease is so scary – I remember you saying your husband suffered but didn’t realize you also had it. Please take care, Adrienne.
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Bless you, Sharon, for reaching out to help others dealing with parents suffering from this dreadful disease. In March it’ll be three years since my mom died and I continue to have nightmares about those last years. Thank you for all you do….it helps us all.
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So sorry to hear this, Betty. My mom died this past March and I also continue to have nightmares and doubts about my mom’s last years of life. But I thank you for your kind thoughts, and I hope you recover soon from your loss.
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I think you and I both share a form of PTSD, as we’ve been through the same thing. Wishing you also find recovery and peace from your loss. It takes awhile.
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You’re right about the PTSD – it’s not only from being subject to war but also to extreme situations. I was shocked when I was told I suffer from it, though I’m healing. The person who told me has also been helping me work through my problems. Betty, I hope you’re healing as well.
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Thank you, Sharon. It’s caring people like you who help. I’m glad you have someone to help you work through things.
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Me too – I am very fortunate.
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