This blog post was written over the last two months. Sometimes life just happens. I started this when it was clear my mom needed to move to assisted living. Now on the other side, here are my reflections. The photo of letters were love letters I found written between my parents over 60 years ago while cleaning out my mom’s cottage-treasures indeed.
I am a storyteller. I tell stories to children for a living. It is amazing. There is so much in our stories. There is so much that we can learn from each other when we share our stories. I wanted to share with all of you a little bit of my story.
My mom has Alzheimer’s disease. She was diagnosed two years ago but I have known for a lot longer. All her siblings and her father had it. And about 15 years ago, her personality changed dramatically. If I had known what I know now, I might have done things differently. But that is for another post….
We are entering into a new stage now. It is time for her to give up her cottage and move into assisted living. This is going to be a hard transition for her but I will be by her side, helping her along the way. And I know she knows that now. She can’t remember to take her medication and doesn’t always know if she has eaten or not. She is wearing the same clothes everyday. She isn’t going up to the big house for lunch or her mail. I am the only person she sees most of the time. I am her person. This took a lot of courage for me.
My mother’s mother died when she was 9. Her father married not too long after to a woman who did not like kids. Her childhood was filled with neglect and emotional abuse. She was the only one of her siblings to go to school beyond high school. She went to nursing school where she met my father at a dance. He was a dashing Italian who was the first in this family to go to college. They married and moved to Philadelphia and then Delaware. I was born while they were in Philadelphia. We spent every weekend however, at my father’s parent’s home in PA. It was a typical Italian immigrant family. My fondest memories as a child were at my grandparent’s home, especially my grandmother, who ended up being my light and my person for most of my life.
My parents divorced when I was 11 years old. My mom had a long time relationship with a man in our neighborhood. They would eventually marry many years later when he was dying. Their relationship was up and down throughout the years. It was very hard on my mom. We were the first family in the neighborhood to have divorced parents. It was not a good time for me. My parents used me to get back at each other. My father remarried. My mother had an emotional breakdown. My brothers and I were left to fend for ourselves in our teenage years. It was very, very hard for all of us. My brothers and I bonded during the time but we were in survival mode. My one brother turned to drugs, I turned to sex and my youngest brother just hung on. I married at 19 to get out of the house. My one brother left and went across country to make a life and my youngest brother went to medical school. My mom worked as a nurse and eventually got her masters degree. Her relationship with her lover continued to be an emotional rollercoaster for her and she wasn’t present for us. Gosh, when I read this the facts sound so much like a list of events. These events, however, have made me who I am in so many ways.
Throughout my older children’s childhood my mom was in and out of our lives most of the time. We would vacation with her and her partner in his family’s lake house in NY State. It was always a wonderful time. One of my best memories is when both my brothers and their families were all together at the lake. My two sister-in-laws and I were all pregnant with our boys due October, December, and then February.
Fast forward. My mom’s partner got very sick and ended up dying. My mom took care of him at the end. I remember going up to their house right afterwards to be with her. Several years later she had breast cancer. She wouldn’t let anyone help her. Then my brother and his wife began to have major issues. My mom took my sister-in-law’s side in the divorce. It became very bitter and to this day,it has never been resolved. Our family became fractured. Sides were taken and boundaries put into place.
By now my mom was the ultimate volunteer. She volunteered everyday at a different place. We only saw her at occasional family events but most of the time she had other places to go and do. She traveled a lot. She spent a lot of time with my ex-sister-in law and her kids- going on vacation with them, etc. Our lives at that point had drifted apart. I had set strong boundaries around my ex sister-in-law and my brother. My brother remarried and built a new life. When I got divorced, my mom tried to do the same thing with my ex husband but he and I both agreed not to let that happen. We have six children together, we had to get along and heal for our family’s sake. To this day, he comes to all of our family functions at our house and we get along better than we did when we were married!! I remarried an amazing man who loves, supports and accepts me as I am. Our family healed but I still needed to keep strict boundaries with my mom who continued to be divisive within our family.
Then my other brother committed suicide. He was 49 years old. It was a horrible death. He left a wife and two teenage children. My mother was crushed. She wouldn’t let anyone in. She isolated herself. The pain of losing a child can not be understood until one has felt it themselves. He was my brother, it was heartbreaking. It was after this that I realized that she was in the beginning stages of Alzheimer’s disease 4 of her 5 siblings had all ready succumbed to the disease. Five years later, she was diagnosed. Her only remaining sibling died shortly after my mom’s diagnosis.
Our relationship up to two years ago was strained to say the least. She did nothing to try to have a relationship with me and I stopped trying.
Then, almost exactly two years ago, she came to me and told me she was in early stages of Alzheimer’s disease. She was scared to death. She had watched her siblings and father lose themselves in this horrible disease. She was all alone. She could tell she was losing some of her memory but she still was able to function well.
I called my brother and met with him and his wife and asked him if he would be part of her care. Not surprising, he said no. There was too much hurt and pain, and there was just no going back. I totally understood.
Love.
So here I was. I had a spiritual decision to make. Yes, spiritual. What did God want me to do? What does my faith call me to? What did my heart say? This was the big question. Living from my heart isn’t always easy or logical. Living from my heart, for me, is honoring that deep love that I have in the depths of my soul. Living from my heart has been how I have tried to live my life- love being my compass. It is who I am and a gift I have been given. It is all about LOVE- unconditional, wildly fierce, selfless, sacrificial, big and bold, and I knew.
It really wasn’t even a decision-it was a knowing. In our Baptismal Covenant we are called to respect the dignity of every human being- this is my mom. No matter what the past was, no matter what had been said and done- forgiveness and letting go had to happen first. This is my mother and this is what we do for each other in the kingdom of God- we take care of each other, we love each other, we support each other- we are the hands and feet of Jesus in the world. And so it is. Forgiveness and letting go was the first step. The second step was to open my heart again to the love that is unconditional, compassionate, giving and at the heart of my soul. Forgiveness,letting go,and love. Embracing it all with joy and gratitude.
Gratitude.
The last two years have been a gift. I can’t say it hasn’t been hard at times. We have gone through my mom being angry and suspicious questioning every decision. We have been through taking the car away. Now we have gone through giving up her cottage and going into assisted living. We have gone through much together- and always, I am by her side. At one point, I had to say to her that I was not going anywhere- she could yell and me and be angry with me but I am going be here for you no matter what happens. It has been a gift to get to know her in ways that I never have before. It has been a gift to spend time with her and just be together. It is a gift to be her one.
Grief.
Each time my mom has to go through the next step in her disease, I end up grieving with her and for her again. Each time I think it will get easier, but it never gets does. My heart breaks along with hers. Letting go of her cottage was so hard for her- this was her independence. She was worried more about her plants more than anything else. I now have a bunch of her plants at my house too.
Living in the Present.
This experience is teaching me so much. The biggest teaching for me is to live in the present. Someone with Alzheimer’s has to live in the present. Whenever I go to see my mom, I always put my Alzheimer glasses on- I try to look at the world through her eyes- the past is getting fainter and fainter and the future does not exist so there is just this very moment in time. She loves looking at the clouds and the birds. I can’t help but now watch the clouds and be in awe of their every changing movements. She talks to all the kids we see and speaks her mind compulsively at times. I am now recognizing when her brain goes into a loop that just keeps going. Putting on those Alzheimers glasses allows me to be more present with her, compassionate and understanding. Seeing the world through her eyes and living in the present moment- this is a gift. Slowly it is also becoming my way of being.
Savoring and Celebrating Life.
Now I am savoring and celebrating life each and every day. I am taking deep breaths after a whirlwind couple of months of grief, decision-making, compassion, and care. I am giving myself time for radical self care- to write, reconnect with my heart and being open to what comes next. My Thursdays off will still be spent with my mom. These days are sacred and holy times for both of us. We will find ways to savor and celebrate this adventurous life together as we navigate this new way of being.
I am confident that by living from my heart, I will continue to shine my light out into the world and rejoice in each and every moment! It is all about love.
Just Be. 