The gift of Alzheimer’s
My Mom, Nancy, has been struggling with Alzheimer’s for the past few years. At first, it was a bit inconvenient, but manageable. She was able to take the forgetfulness in stride. She was able to cover up her confusion when she couldn’t remember something, and she could be redirected from frustration to present moment awareness and understanding of things.
Then she fell, and as the saying goes, “All the king’s horses and all the king’s men couldn’t put Humpty Dumpty together again.”
She has fallen before, but this time she ended up in the hospital, needed surgery, and had to put on an apparatus to drain her wound/surgery site. Wearing the machine has made it impossible for her to get up and down and walk on her own. I believe this new part of her daily existence (no self-mobility) is what has thrown her into the next stage of this disease.
Losing the ability to ambulate on her own and not remembering that she needs help getting up and down (because she is attached to a machine that needs to be carried with her when she gets up out of the wheelchair) is just too much.
It has caused anger and frustration to bubble up, and often times bubble over, spilling out of her in angry words, unkind physical behaviors, and uncontrollable urges to just get up and escape her situation (which has caused a few falls and now is requiring her to have 24-hour care in a skilled nursing center).
Me and my siblings have been coming to visit often. We are all at least 5 hours away, so it’s been a commitment on our part. Up until today, Mom recognized us (most of the time). She knew where she was and where she wanted to be (home with Dad). She was operating in the present. The present that we all recognize and agree upon as reality.
Today, things changed…
Mom doesn’t know who I am. She thinks I am her lifelong friend Avie whom she has known since kindergarten. According to Mom today, “we” have known each other since we were both 5. We went to school together, played in band together, and even crushed on some of the same boys.
Mom has been telling me (Avie) about her children and grandchildren.
It’s weird to hear her talk about me to Me. It’s like I am in an episode of the twilight zone. I am sitting there, but outside myself, walking around these two people whom I recognize but evidently don’t really know and witnessing a different reality, a new plane of existence.
This experience has been sweet and sad and joyful and and and…
So many emerging feelings pop up for me while others seem to be peeking out but staying below surface. I know they are there. I can feel them, but I am not able to articulate what the feelings are, and I don’t even know if I need to…
On the one hand, it’s sad to see her totally disconnected from present moment reality as I am experiencing it, and as everyone around me seems to be experiencing it. But, on the other hand, she is really calm, engaged, and laughing, and she hasn’t been like this for a few years.
It feels so good to hear her laugh, and it feels good to laugh with her.
She reminisced about high school and music “we” played together and “our” loves and love lives and her pride in her children and grandchildren.
She asked me (as Avie) about folks we went to school with and whom had I been in contact with since graduation. She really wanted me (Avie) to be sure to stop in and say hi to Mom before I went home (her mother who has been gone for 28 years).
Today, it was just two old friends catching up.
What has this day taught me?
That meeting someone where they are is easy when I let go of my “idea” of what someone else’s life and reality should be.
That allowing reality to be whatever it is in the moment while being grateful for the ease and flow of the moment and in conversation is a gift.
That being present as whomever my Mom thinks I am is okay, and it has allowed me to get to know some of her childhood and young adult antics and secrets.
And that my Mom is my Mom, but she is also so much more…
Is this the gift of Alzheimer’s?
Is it possible for me to see it from a new and different angle?
Is it possible for us humans to let go of who we have been programmed to be and just become who we are in the moment?
And if we can, is that process frustrating and mind-blowing (literally)?
And can we do that consciously without having the pain of the disease to prompt us forward to process our life and create a new identity?
Today’s moments were strange for me, but that’s because I have a preconceived notion of who my mother is and who I want her to be.
And maybe, just maybe, on some level, she knows herself more than anyone else, and she is ready to let go and not give a crap about what others want her to be anymore.
Maybe today, she made the unconscious choice to let go of all that she has been frustrated with and anchored to, and she has moved into a place of peace with who she wants to be.
No baggage what so ever.
Fresh new Nancy—peace, presence, and playful.
May it be so.
Accepting the daily ‘loss of self’– of qualities prized by oneself, others, and society, including various freedoms of mobility, pleasurable activities, and lucidity itself– and whatever condition one is in, is maybe the most difficult thing imaginable. Accepting this in a loved one, including imagining and sympathizing with how challenging it must be for them, can be heart-wrenching. It also puts into question the very nature of consciousnesses. I think of a short play by Harold Pinter called ‘A Kind Of Alaska’ that does some justice to the issue.
Thank you for sharing your very emotionally challenging experience. It’s heartening to hear that you- and it seems your mom also- have found some comforts and gifts among these circumstances. And that you’ve chosen to go deep into the experience, and have found some gratitude, and illuminating takeaways about acceptance and joy therein. It’s a moving account, and I’ll surely be gleaning more from it as I allow its lessons to settle in.
Thanks, Anilyah, for your very vulnerable expression of joining in with your mom’s alternate reality. It’s an excellent lesson you are sharing with us, and will serve us all well.
This has taught me some deep lessons, Aniiyah. They are still working on me. I’m so grateful for being exposed to your valuable perspective on your situation. If only more people thought the way you do!
May we all learn to see the gifts in the challenges… Whenever we see them!