This book is a masterwork and a masterclass. I've been holding onto it awhile, not knowing when quite to read it~ The Brookline Public Library is now looking for $28 for me to replace it, and believe me its worth so much more. But this last month I have been reading it slowly, a chapter at a time here and there. But I am so grateful for this book and for Dasha Kiper. More than she could possibly know.
I often stay away from books where Alzheimers-Dementia is a part of the storyline, though it emerges often whether we want it to or not. I also really tend away from non-fiction, even when its excellent. But something in me knew this book would hit the right chord and it absolutely did.
So we all know something or other about the devastation of this disease, and how to best approach it. But only a certain select club understands just how hard this is on loved ones and caregivers. What I appreciated most about this book is that when a brain deteriorates and loses its memory, what is astonishingly not lost is personality and dynamics. A long wound or bond between two continues to exist. So any prior dynamical repetition, potentially even the ones that cut to the core, they are still there. The caregiver has that gift that keeps on giving (although when positive that is amazing) and yet at this point it becomes an "unwinnable fight" as if it were ever "winnable" in the first place. This book is actually about how hard these losses and personality changes or exacerbations are on the caregivers and loved ones, who are carrying longtime wounds of their own on top of the deep loss and natural frustration they are experiencing. Sounds tough. But the book is actually loving and freeing. Through the groups and consults Ms. Kiper offers, she could not be more loving, and more compassionate to the duo and families. She is gentle and forgiving, and invites us to forgive ourselves and the person we love, and truly let go, and focus on the love. And not by asking us to erase our own angers and losses. Kind of to hold them side by side on the journey. Now much of this take isn't her exact words. Its part feeling, and part Psychologist Daughter on the Journey trying to figure this out and have takeaway and a gift for others. Its truly about honoring your feelings and the person you love, but getting to truly love by compassion for self and other, and letting go. Its a more spiritual grief, and I am loving it and soaking it up.
The question I am left with, for Dasha, myself, and anyone who wants to respond, is this. I am "lucky" in a sense that I don't have to deal with my mother every day. (I call every day). I am also quite worried that she lives all the way across the country and that my poor father has this on his shoulders all the time. I was quite focused on that. I actually believed my father wouldn't be able to make it, and deal and that there will be a time where my father will just "fall away". But here we are and against every intuition I have had, usually which used to be strong and on point, he is the one there steadfast. They are still in love and having fun, and lonely in incredibly different ways, and he loves her, and she is absolutely driving him maddenly crazy. He is stronger in his steadfast love than I had imagined. But that is my Dad, and the legacy of that is a gift of which I am incredibly proud. Truth be told, I had already forgiven him for cutting out if he needed to, although that would be the hugest loss of my life. But I love him enough to give him that if he needed it. And I thank him beyond words as a gift to me, that he doesn't and won't put this in my lap until he has no choice to. Even if all of this is unconscious and just living our lives, that is my process.
My mother is Jolly, which has been a gift to me. I know there can be personality changes, and that perhaps that will come. But my loving mother has always had a critical judging negative edge, and the gift Dementia has given us, is a reprieve, there is no sign of it. She's just loving and jolly and very into the beauty of life right now. She has let go, and that is a gift to her during this challenging chapter. She is all love. And when I mess up and remind her that she is in serious trouble, she seems not to notice or just laughs or makes up some flimsy non-sensical excuse. She has made this easy. I am lucky these days on so many fronts. But I do know its a long journey.
Here is my dilemma. My brother and I bought her a red light helmet. There is absolute incredibly positive research that this can help her. This can reverse some of her symptoms, perhaps all of them, and this is medically backed. All she has to do is wear it 28 minutes every other day. And I cannot get her for the life of her to do this one thing that will improve her. I have tried to get people in who will help her with this, and they understand they need to get in another way first, and that they can't fight with her on this, and that makes sense to me. But its sitting in her house unused and she walks past it every day, and this is just something she cannot do. So many things I won't fight with her on and I can let go. But this one I have swallowed, but is hard to swallow. This can potentially to absolutely help her, and therefore help my father. But... she's also happy and jolly and ultimately this decision is her own. Its not mine to make. So I have some practice in letting go, albeit from afar. But this one irks me. My story reminds me of a story from the book. Two and a half years ago, just before her symptoms became apparent, we are having dinner with friends in Florida, and she is saying about someone's parent, there are ways to completely reverse Alzheimers. No one should have to suffer with this. We even sent her the books as a gift from Amazon the next day. Within a year I am combing those books in their home, and how many times have I confronted her since, and said, Mom you are a Holistic Health Teacher, Advocate, and Warrior your whole life. You have always stood for being a fighter, and for Alternative Medicine. Its been your whole life. You have always said no one should suffer with this. I need you to be that fighter now. I need you just to do what you have done your whole life. You can reverse this. This fight is who you are. And she seems somewhat impressed by that for the moment, but the key moment that got me, is when she said, "Suffering, I am not suffering." "Well, I am, I retorted." And that my friends, is the point of Dasha Kiper's book. Who is the one who is suffering, and who is is the one who needs to let go. I have largely let go of this. Once in a while I am back on it, but its not my life and choice, even if she has Dementia. Its still her choice and his - my Dad's. My job is to make things easier for them. I guess I have answered that question. But my question still remains in the back of my mind. Should it matter, if the one thing you are fighting about could actually help the Dementia in the first place? Perhaps we will never know. But this is the world I am living in now, so we shall see how the story goes. Keep you all posted.