Easing the Pain of Dementia with the Power of Presence
The Advice I Wish I had When My Mom Began Her Journey
The first time I noticed my mom was slipping was at a family reunion. I called an hour out from the destination to update my family on my revised ETA. On arrival hugs, kisses, and chit-chat were shared liberally. I kissed mom, asked how she was doing. “Any better and I have to be twins, oh hey, Bobby just called and said he was about an hour out”. I owed my brother an apology, he had been telling me, I didn’t have the ears to hear. On some level, I didn’t want to believe it. I couldn’t believe it.
I’ve lost three women that I love to dementia, my mom was the first and the worst for reasons that are certainly obvious. As ‘health care” continues to replace worn-out organs and joints, the hard drive is increasingly what ultimately claims the user interface for the human experience in the end. It helps to remember we are Spiritual Beings having a human experience and the Authentic Self wasn’t born and will never die.
This is a generic version of an email I wrote to a dear friend whose mother’s dementia is advancing. He was touched and thankful for the advice and compelled me to share it more broadly. This is a generic version of that advice.
Hey My Friend,
I am sorry to hear the news and I am sorry it is hitting you so hard. I wish I had the specific words to comfort you {I have lots of words as you’re well aware} but since it has been a while and I don’t know all the nuances of your circumstances, I am writing this letter to “my 2001 self “, offering the advice I wish I could have received, from the perspective of what I know now.
The path your mom is on is a oneway street, and it is downhill all the way. That sucks, I know, I have traveled it more than once. The road can be hell but it doesn’t have to be that way. As a Spiritual man, this will not only strengthen your understanding, it can also light the path. First, know that every day is different. There will days that she will look at you and have absolutely no recognition at all, other days, she will look at you with a look that conveys, “I know I know, just can’t quite place the context”. On other days, you will suspect spontaneous healing has occurred.
If you view this as an opportunity to practice Presence, compassion, and unconditional love the road is going to be smoother and brighter. Practice non-attachment to outcome. Release any need to test her memory, our conditioned need to evaluate is ignorantly, innocently, and unintentionally a form of cruel torture. She knows her memory is fading, she doesn’t need you reminding her of that and you don’t want to become a tormentor in her mind.
The Presence part was particularly powerful. You might visit her after lunch, she may or may not have remembered that she has eaten, she might only know that at the moment she isn’t hungry. It’s interesting how the conversation has to change when you choose not to include any reference to the past or the future. This will be an excellent exercise for you to practice presence and a well-received gift for your mom.
It’s interesting how the conversation has to change when you choose not to include any reference to the past or the future
Consider binge-watching her favorite movies from her childhood. Those memories are locked deep and will be the last to go. Don’t allow your ego to get bruised if she confuses you with her childhood sweetheart but can remember the words to Oklahoma verbatim. Hold hands and snuggle. Our sapien love of touch is primal, and just trust me on this one, you will be really glad you did, these tender moments are truly the gift that keeps giving and comes back in spades. Walk in the garden or nature and notice the blooms. If you occasionally say foolish things like “look mom, this flowers starting to bloom remember it was just a bud yesterday”, welcome the gentle reminder which likely will come in the form of “were you here yesterday?” It is just a gentle reminder from Wisdom to return to The Moment.
With my mom, as we got even closer to the end, and the ability to have even a conversation about what was going on in the moment was beyond the ability of her internal hard drive, all we could do was simply be together. I would replay imagined memories of me as a chubby little bundle of joy before I could speak and her just lovingly looking in my eyes, her heart bursting with more joy than she imagined existed. She knew my facility with words hadn’t shown up just yet, and that was perfectly fine. The love we shared in the moment gave her and me a joy that was beyond words anyway. In fact, you might have already noticed, at least on some level, the best moments in life, the memories you truly treasure are often lessened by words. As her words left, I found peace and solace realizing this role reversal was a wonderful opportunity for me to acknowledge through action having been blessed with the best mom for which I had right to hope.
As I write this, tears of joy and gratitude arise and are flowing freely down my cheeks in this present moment. In closing, I’ll simply say that buried deep within all of our conditioned responses there can be, no scratch that, there are beautiful moments ahead. You just have to slow down, settle into this moment. Be Present and you will become The Gift.
I love you, reach out anytime!