It’s been a shocking 993 days since my last post. (Thank you all for staying with me, and a special thanks to those who’ve subscribed recently.) So much has happened in that L-O-N-G length of time. My beloved stepdad, Colonel Curtis D. Fish, died from complications brought on by dementia. Then my dear friend, Bonnie, who suffered from early onset dementia, died. Then my friend, Roberta, who also suffered from dementia, died. That’s 3 people since my mom died of dementia in 2014. But given that there are approximately 46.8 MILLION people worldwide living with Alzheimer’s or other forms of dementia, I guess this isn’t surprising. But it sure is unacceptable. In fact, dementia in all its forms is beyond unacceptable. So how do we learn to accept it?
When I talk about accepting the unacceptable, many people raise hell with me. Curse words are often used to describe just how much they don’t intend to do such a bizarre and radical thing. I hear counterarguments like yeah, but what about cancer? What about human trafficking? (insert your own worst case scenario here) Are we supposed to just ACCEPT such awful things? Wait. Take a deep breath. I didn’t say we have to like them, or condone them, or wish for them. I said we have to accept them. Big difference.
Eckhart Tolle says that acceptance of the unacceptable is the greatest source of grace in this world. Anne Lamott says grace feels like water wings when you feel like you’re sinking. In other words, if you don’t want to sink (and who doesn’t want spiritual water wings?) practice accepting dementia (the Great Unacceptable).
Because if you’re like me, and I suspect (read: know) you are, then dementia works/worked to destroy you – body, mind, and spirit – as much as it does/did your loved one who has/had dementia. As I’ve disclosed in previous posts, I lost my soul when my mom was diagnosed with Vascular Dementia. I relapsed after 20 years of sobriety. I started taking pills. Why? Because I’m an addict, and when addicts are in pain and not doing what we have to on a daily basis to stay emotionally, mentally, and spiritually fit, we’re in deep sh*t. And guess what? You don’t have to be an addict for caregiving to rob you of everything you’d previously held dear. You don’t have to be an addict to earn the privilege to keep yourself emotionally, mentally, and spiritually healthy so you can somehow get up every day and take care of that person that needs you so much. (And that includes you every bit as much as the loved one you care for).
Nothing had ever hit me as hard as my mom’s diagnosis did. Nothing had prepared me for the pain of losing her in pieces over years (8 to be exact). Nothing had prepared me for the overwhelming grief and dread and responsibility I felt every day. I let it destroy me. Well, just about – until a friend of mine dared me to try to accept my mom exactly as she was right then, instead of lamenting over the person she wasn’t anymore. It was the most radical thing I’d ever heard, and I was NOT happy about it.
In recovery, I’d learned about the art of acceptance. In fact, I considered this to be the greatest life lesson I’d ever learned from recovery. But I sure as hell didn’t believe it applied to dementia. The book, Alcoholics Anonymous, calls acceptance the key to all of our problems today. It goes on to say that anytime we’re a big fat trainwreck of a mess, it’s because we’re not accepting something (yes, that’s paraphrased). It then says I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes. And there it is: the answer.
I can’t do a damn thing to change the fact that dementia happens. Yes, I can give money to research and support anyone and everyone who wants to cure it, but I can’t RIGHT THIS INSTANT fix it. All I can do is fix my attitude. Railing against reality when my mom was diagnosed, when she was deteriorating, when she lost most of herself, didn’t change that reality. It just kept me in a perpetual state of agitation and distress. All I could change was my attitude. That was all I had control over. When I did that, everything changed.
Yes, I believe acceptance is THAT important. It enabled me to be more present for her and more present for me. It helped me to wake up every morning with less of a pit in my stomach. I didn’t achieve sainthood, trust me. This is a push/pull learning experience. But even being willing to practice acceptance opened the door for me. It gave me hope that I could be happy despite her illness. It helped me laugh again. It kept me from sinking all the way to the bottom of the pool.
Acceptance is the last stage of the Kubler-Ross grief model. It’s preceded by denial, anger, bargaining, and depression. I had a mixture of all of those most days, and sometimes I still do, four years after my mom’s death. But I can say that after a while, acceptance started to win out. It became easier to get to with practice. And lots of willingness. (These two articles will help you with both: “Radical Acceptance” and “5 Things Everyone Should Know About Acceptance”).
In her incredibly helpful article, “How to Find Acceptance of Your Loved One’s Dementia,” Dr. Carol Berman describes her journey after her husband’s diagnosis and offers six tips for finding acceptance. She says that
acceptance of my husband’s deterioration did not mean I was giving up. My acceptance meant that I was making room in my mind and emotions for what was already in existence. Then change could occur. Change would occur if I accepted the reality of his situation or not. Acceptance was the most emotionally healthy and rewarding path to take.
Make room for change to occur. Be willing to accept the unacceptable diagnosis of dementia. And if you feel incapable of doing that, ask for the willingness to try. It will change your life. I promise.