“Oh it’s you!”, she says surprisingly as she opens her door. My name doesn’t come to her immediately, but she still recognizes me as someone who she is happy to see. I had tried to call her and let her know I was coming to visit, however, my friend has lost her ability to use her phone correctly. Dementia has taken that, and much more, away from her. It has been a progressive decline over the past several years that has left her now with rapid-declining, severe dementia, and living in an assisted living facility.
It is incredibly sad to witness how my friend, a strong, independent, kind, generous, and witty woman has lost all personal agency at the age of 72. She worked for decades, dedicated to a profession of caring for others, raised two sons on her own, adored her grandchildren, valued and invested in her friendships, liked to have fun, hosted friends at her cottage, and, in recent years, had begun to explore her love for travel.
Her life now is a very faint rendering of what it once was. She can no longer live in her own home, cannot carry on much of a conversation, has lost her memory of significant events in her life as well as what happened yesterday, and is confused most of the time. Her life is very small now, limited to the activities that others make possible.
It isn’t easy to spend time with her now. We no longer can have conversations about much of anything as she can not follow the stream of conversation and has lost even the simplest of language.
So much has been taken. What remains? Emotionally, my friend is still very much herself. Her playful spirit and her ability to laugh, even at her current follies, are very much intact. She seems overjoyed when we go for drives with the windows down and the music up. We stop to enjoy lunch or coffee while we are out. Even with her limited language, she can express how happy and relaxed she feels in those moments. I can see it in her relaxed body language as well. Amid all the sadness I feel watching her decline, there are moments of joy. I remind myself to try and focus on that which remains.
There was worry when she still lived in her own home and now that she is in the facility, although it is sad to see her decline and how limited her daily life has become, it is reassuring to know that she is safe and being cared for.
Spending too much time with her is stressful and I have learned that I must take care of myself as I share the dementia experience with her. I spend time with her regularly with enough time between visits for me to enjoy my own life, practice acceptance, and let go of the feelings of helplessness and hopelessness that can consume me. I try to make sure that when I show up for her I am rested and in the frame of mind that I can be present. While there are stressful, even annoying moments, I try to remind myself that what I am frustrated with is dementia, not my friend.
Underneath all the challenges, my kind, generous, witty friend’s character is very much present. We are still able to carry on and laugh together.
She has always been a bit of a stoic woman and expressing her emotions has been challenging. That is still the case. She has suffered extreme losses, having her younger son die only a few months after she moved into the care facility and more recently she was forced to let go of her beloved feline companion who she loved like a child. True to her nature there isn’t any public expression of her grief. It is there though, and when gently given the space to share one on one, she has let me know that she is heartbroken and cries often when she is alone.
There is a very long list of things I can no longer do with my friend, conversations we can not have, games of cards and scrabble at her kitchen table we can not play, and travel plans we can not make. What remains for us to share is limited. My focus now is to keep it very simple and allow my friend to express her true character knowing that she is cared for and cared about. Humor is extremely helpful. She and I have always been able to laugh together, often about ourselves. That hasn’t changed.
While dementia certainly is an issue in our culture, most of us will never experience it. We will, however, experience a decline as we age. We will have those moments of forgetting and confusion and things will not be as easy as they once were. There are things we now enjoy that we will need to let go of. We will suffer our losses and say our goodbyes. We will share some similar experiences of aging and we will have some very different experiences. Alongside all of this, we will experience the very essence of who we are. Let’s bring the true essence of our beautiful selves into our interactions and remain open to others so they can do the same.
Let’s not focus our attention on what might become our reality. Let’s continue to live the fullness of our precious lives.
What a beautiful but heartbreaking article! As I sit here with tears I am lost for words but realize we can’t take each day for granted. You are a great friend Heather!
The ability to continue spending time with your friend is so very caring and comes from your compassionate heart, as always. One source of information for me was in a recent workshop that I took related to Dementia given by Teepa Snow.”Positive Approach” Her approach is exactly that ….positive and wise with some great advice for all of us as we continue on our own journeys of aging honestly along with our friends and family.
Oh, such a challenging topic, Heather. I have 2 sisters in varying stages of dementia. Both of them are in BC, and in different facilities. It is absolutely heartbreaking to lose those we have been close to, piece by piece, memory by memory. Unfortunately, I am unable to see them in person, but am grateful for modern technology that allows facetime to happen occasionally. My oldest sister is experiencing a more advanced stage of dementia, and she really has no idea who I am when we have the occasion to connect. The need to connect with her is mine. My other sister has only been in care since March 2023, and still knows who I am when we talk. Conversation is still possible, but tends to be limited to certain topics (weather, her going back to her home, and the occasional foray into her memories of growing up). She still has a great sense of humor, so I make it my mission to give her a fit of the giggles when we talk. On the upside, I am grateful she is no longer living on her own, and that her daughter makes the time every week to visit her.
You offer good advice….as always!
It’s a continual letting go experience when we are accompanying someone we love on their dementia journey. I am like you Pixie, my mission is to make sure my friend has a good laugh when we are together. She always had such a great sense of humor and that remains. Our time spent together is just as much about what I need as it is for her. Never easy, sometimes down-right annoying, but always meaningful.