Wednesday, March 26, 2008
I love this picture of mom. I call it her Goddess Moment. I am so proud of her and at the time, I didn't really understand why it inspired me so much. Yeah, she is cute as a button! One look at the sparkle in her eyes and you know there is still a lot of life force in her wanting to be recognized and heard...and she was really seen and heard.
It was May, 2007, my mom stopped eating and began refusing to take her medications. So determined was she, that she objected by whatever means necessary to get her point across, even if it meant shoving or hitting her well meaning nurses. Mom was losing too much weight and we were desperate to get to the bottom of the problem. Her labwork was normal. It was a frustrating mystery and out of desperation, I finally asked that Mom be transported to the emergency room where I hoped we could get some answers. I left work to meet her in the ER. When I got to the hospital, I asked for Julia and the clerk said, "Is she wearing a crown?" Caught off guard, I couldn't help but laugh and confirmed that was most likely my mom. We had given her a plastic tiara for her 79th birthday and she had worn it nonstop since then. People looked at her differently and treated her differently when she wore that crown and she knew it! She liked the fact that it made a difference in how people reacted to her. Her nurse at the nursing home said when EMS came to get her she went back to her room just to get her crown!
I walked into her room in the ER, she smiled at me, quite serenely, and let me take her picture. It was a sweet relief to see her sitting there, so beautiful and in charge! I watched in amazement as various clerks, nurses and even the doctor walked in to see her and their entire demeanor changed when they saw her. I knew my mom knew how she was affecting them. It felt like she really was a queen and she was just letting every one else in on the secret. Perhaps it is my imagination, but it seemed like they treated her with an increased measure of respect and definitely joy!
I had been so afraid she was dying and felt we were getting to that place from where there is no turning back. In hindsight, I see I should have known better. The look in her eyes is so full of life and spunk! This picture gave me hope but I also knew if she didn't start eating, she would be leaving us. The doctor diagnosed "failure to thrive" as a result of her end-stage dementia and she was discharged back to her nursing home where she was put on hospice.
Years before dementia, Mom made her end of her life decisions well known to the whole family - no tubes, no ventilators, no feeding tubes...when it's over, it's over. Our job is to honor her choices and to let her die with dignity whenever that time comes. It was heart wrenching and devastating, but I knew what I needed to do and that was to love her enough to let her go. I prepared myself for the worse...or so I thought. With the help of our incredible hospice team, we developed a new care plan. Her medications were reduced to only those she absolutely needed. The nursing home staff was instructed that if my mom refused to eat, leave her alone. If she refused to take her medications, let her refuse. Quite simply, we decided to quite torturing her by making her do what "we" thought was best for her and let her make her own decisions. Sounds nuts, right? After all, she's got advanced dementia...what does she know?
Quite simply, once my mother regained some control back of her ever changing life, she made an amazing turn around. She decided she was hungry after all. She decided the medication she was supposed to take was okay. She quit being combative and fighting with her care providers. She was happier and at peace again. My mother in a very quiet, determined and eloquent way She so eloquently taught us that she still wanted to live life on her terms - with dignity and honor...and ultimately to become self-empowered, dementia be damned!
Today I understand that my mother's spirit was telling us what she knew she needed - the ability to still have a voice - to be heard... to make some of her own basic choices at a time in her life when dementia was slowly but surely changing her life..her ability to think, to speak, to be who she really is, with or witout dementia!
That was my mother's third time on hospice. She started gaining weight again, quit fighting and began thriving again. Today, she talks even less, no longer walks independently, but still is as tenacious as ever. She is teaching me as never before in my life. I don't want to wait till I'm 80 to claim my Inner Goddess and to proclaim her to the world...but it's pretty cool to watch when someone does!