Regret or Rejoice? Caring for Mom: Day 12 – One Alzheimer’s Caregiver’s Experience
12 days ago I took over caring for my 82-year old mother who is challenged by stiff, achy joints, severely limited vision and an unreliable memory.
She’s not always sure where she is, what year it is, or that the conversations on the TV aren’t actually happening in reality.
This is my place to process the experience.
Welcome to my world as a caregiver.
One of the biggest challenges in taking over the care-giving of my mother – besides enduring the hurtful screaming and emotional distress it caused my sister! – is the mental adjustment to being a full-time caretaker with the resulting loss of free time.
As a single parent I remember clearly how joyful I was when my daughter began sleeping through the night, was fully potty trained and went off to school, my life became more normal. As a past perfectionistic productivity hound, being a mom was hard on me emotionally.
While changing baby diapers, breastfeeding, and doing laundry, I never felt that I achieved the things most interesting to me and I was frustrated at not being able to concentrate on writing. I also felt guilty for wanting to work so badly!
So this transition to care-taking for mom has brought up those past feelings of being ‘burdened’ with menial household duties – like dishes and laundry and toilet training. It brings up dread for being trapped in the house because the difficulty to just run errands with the wheelchair, slow walking, temperature sensitivity, etc. is simply unbearable.
Even now, after accepting this role, it pains me to type these words! I sound here – as I did inside my head when I thought those thoughts – like a selfish brat!!
How could I dread taking care of my mother, the woman who gave me life and nurtured me along my own bumpy road to adulthood? Seemingly ungrateful I even started to feel guilty and ashamed of myself.
My Saving Grace(s)
In addition, to the loving support of my sweetheart, my daughter and family, my mindfulness and meditation practice have been a saving grace. While I’ve had a few tearful moments here and there, mostly I’m now just calm.
Being mindful and aware of the earlier emotions – and self-judgement – allowed me to create a compassionate distance between my ego-mind and my soul. In my heart and soul I am committed to making my mother’s last months or years the best possible. And I am committed to being gentle and kind to myself, which meditation and self-forgiveness has made so much easier. My soul or inner voice are now much more understanding.
Now when I see my thoughts and mind turning to dark thoughts and moods, I can simply say, “This, too, shall pass.”
And when these moments pass, when my mother is gone, I wonder how I will look back on this time. It is from this vantage point that I can engage my ego mind and begin to send compassion to mom and me. At this time in our lives, all that really matters is my presence and tons of compassion.
Work will always be there. The book I’m working on will eventually get written. The presentations will get crafted. Emails or phone calls will be returned – eventually.
The dishes will get done. And I’ll someday catch up on sleep.
I will also enjoy another lazy Summer vacation on some beach… But mom will not.
Choice: To Regret or Rejoice?
Being mindfully aware of who I am being in the moment has reminded me that who I am ‘being’ in this life is my choice. And when I am being resentful, I’m not being the highest version of me that I know exists.
Fortunately I don’t fall into self pity, nor do I feel pity for my mother. She told me just a few short months ago that she is happy with how she lived her life. She even says that, though she would love to go dancing and find a boyfriend, she has no regrets.
But it is certainly hard to see her dependent on others, as she was a feisty little mama in her day!
But I know that her soul is here. And hopefully that deeper part of her is proud seeing how my daughter and I lovingly and patiently care for her.
We listen to the same stories over and over and over. We answer the same questions repeatedly and repeatedly and repeatedly.
But we also joke with mom. We tease her and reminisce with her. We rejoice in the little triumphs of the day – which are usually shared over a bowl of ice cream! 😛
And that seems to help. For now.
I’ve seen many other people who struggled with taking care of sick and frail relatives until the end of their lives. I wonder whether I’ll remain calm, cool and collected.
Meaning at the End of Life
One of the things that strikes me most has to do with meaning. When we care for little babies our focus is on keeping them fed, dry and safe. We just tickle, kiss and snuggle them. We don’t worry about what our gurgly baby sounds mean.
As our toddlers learn to speak we then shift toward encouraging them to learn and explore. The best part of childhood is being able to explore, get spoiled and receive unconditional love.
Then as adolescents the shift toward autonomy and self-declaration is evident. Followed by the young adult wanting to prove themselves to others and to themselves.
The stage I’ve been in for the last few years is less about outward accomplishment and more toward living with meaning and purpose. For me that’s about serving and helping others in their own journey.
I see my elders move beyond me into their years of wisdom giving. My mom LOVED that phase of her life! She’s always been such a proud know-it-all! I guess that’s why this stage is hard. With her short term memory being so fuzzy, and her becoming occasionally confused, even she asks, “What has my life come to?”
In her clear headed moments, I’ve noticed how hard it is for her to accept that rather than being a contribution to the people around her, now she must receive from others. She often says, in exasperation, that she feels useless. 🙁
She often quotes Shakespeare; “Once a man, twice a child.” And it’s true. We are at the stage of focusing on keeping mom fed, dry and safe – just like I did for my daughter when she was a baby.
These reflections do help me clarify my ‘purpose’ and meaning in this moment.
I’m here to be a kind, loving source of support. A helper, a listener and a non-judgmental friend and daughter. It’s my role now. And it gives the long days and sleepless nights meaning.
May we all live with ageless vitality, meaning and purpose.
~ Dr. Andrea