Let Go of Your Plans
When mom was visiting, I could always count on fresh strawberries, cantaloupe and a tall glass of water while nursing my newborn baby boy. Mom had stepped into her most natural and distinguished role; she became Grammy Pammy on the day I gave birth. My first few years of motherhood were filled with so many thoughtful gestures. She was head over heels in love with her grandson, and she went to any measure to show it. Our mother/daughter relationship evolved into daily phone calls and routine visits every six weeks. Without question, it was the closest we had ever been. I think back to the spectrum of emotions that I went through during the early years in our Dementia Journey.
The change in her abilities was made apparent around the time my daughter was born. I clearly remember the day she was driving from Long Island to New Hampshire in order to meet her new grandchild. She would take the ferry from Connecticut, then drive on 95 North directly to our house. I expected her to arrive by lunch that day. When it was nearing 1 pm, I called her cell phone. She answered the call and was clearly agitated and upset because she found herself in Cape Cod. She had driven two hours in the wrong direction! Having made the same mistake myself, I could relate to her distress. However, what was different with my mom was how she was coping with the situation. Her stress literally made her shut down and cry. Our only solution was to have my husband drive down and meet her. She followed him home, and she was an emotional wreck by the time she held her granddaughter in her arms for the first time.
The two weeks that followed were horrendously difficult. There were no strawberries or cantaloupe for me during this postpartum visit. My mom was not able to balance the demands of my three year old or anything beyond the very moment. I found myself managing her along with the rest of the household. The day she left to go back to New York, we breathed a huge sigh of relief. That marked the beginning of our Dementia Journey.
It is so difficult to articulate this loss. It is especially hard to hear people trying to support me by saying, “at least your mom is still alive”. I bit the hand that tried to soothe me with those words. The raw emotion of anger had emerged. At the time, I had two kids under the age of 4. I was feeling the joy of motherhood, but jealousy, resentment, and injustice bubbled under my skin. I watched my friends drop their kids off at their parents houses so they could have a break. They received help from their parents, while my mother was just another person I was responsible for! Nothing was measuring up to how it was “supposed to be” and I was mad about it.
In my saddest moments, I simply wanted to talk to my mom on the phone, she always had a way of lifting my spirits. However, I realized that I had to dig for my mother in my heart and memory. There is no easy way to overcome this loss. Learning the steps to the dance of grieving someone that is alive is very tricky.
I felt the proverbial monkey on my back. I carried what I felt was another burden, while my friends enjoyed the relationship that I used to also have with my mom. I was wallowing in such a dark place. It was the first stage of grief that I needed to transcend in order to get to the place where I could cope. I can’t say I know when I stopped feeling the injustice, but I noticed small changes.
I grew tired of telling the stories of the crazy things my mom was doing. Sharing the bad stuff began to feel like a drama that took too much energy. I was bored of the same recording that was always on repeat. I stopped talking about the bad, and started sharing more joys.I found myself laughing more. I also started to become more of an advocate for my needs. My neighbor, Bobbie, became a surrogate mom. She filled a void that was left in the wake of my mother's dementia. She made herself present for me in ways that I will never forget. It is funny how people come into our lives when we need them most. My coping skills were strengthening. In other words, I accepted that my mother was living with dementia. I knew that I was not able to count on my mom the way I always had, and that was okay.
Letting go of my expectations of what it was “supposed to be '' and grieving what I had lost allowed me to love my family without boundaries. My time with her became about creating moments where she could be her best self. I think grief is personal and different for everyone. Allowing grief to be a part of the Dementia Journey helps families learn to love without judgement. I know this process was necessary for me in order to become the care partner my mom needed most. I can’t say it is a complete process, or if it ever will be. I can say recognizing my own loss helped me to honor what I still have.
Deb Kroner is a dementia care specialist serving patients and their families. If you’re interested in talking with Deb about your loved one, please get in touch.