Who knew what it would mean to be my mom's Healthcare Proxy? I sure didn't have any idea that over and over again I'd have to make a decision to either extend my mom's life or let nature take its course to her demise.
Lewy Bodies Dementia is cruel, a true slow death with peaks and valleys of good days and not so good ones. One day Mom is alert and dancing, the next day she is agitated, confused and hallucinating about my dead brother.
"Eddie's here! See him?! Where are you going? What time will you be home?" She asked my dead brother yesterday with closed eyes. I don't know what she was seeing, but I can tell you, my brother was with her. Ed's visits always calm her and make her feel that she's not alone. Friendly hallucinations have become her comfort and help get her through her days.
Last week, my husband told me about an article that he had read about Defibrillators (read the American Journal of Nursing article here); patients who don't have them shut off will be repeatedly shocked, even after they die. I can't imagine what it is like for someone in hospice, waiting for ones last breath to occur, heart ready to let go but the Defibrillator causes the demented senior to be shocked repeatedly in order to keep the heart beating.
The night I read this article, I didn't sleep all night, worrying if my mom had a Defibrillator or a Pacemaker. I never really paid attention to the type of device she had implanted back in 2005.
I called the Pacemaker clinic first thing in the morning and left a message, "Hi, I read an article about Defibrillators and want to schedule an appointment to shut my mom's device off..." I became choked up, I was literally giving the order to pull Mom's plug. It sucked to do it but I had to, prolonging her life with a Lewy Bodies Dementia prognosis is not going to happen as long as I am alive.
The clinic returned my call and assured me that mom has a Pacemaker which does not give electric shocks and are not shut off; we will wait for Mom's battery to die.
Yesterday, while visiting my mom, she suddenly was running a high fever of 102. She was shivering and shaking, eyes closed, hallucinating about all of her family both dead and alive. She sort of knew that I was there with her, although I can't be sure she didn't think I was my sister Donna.
The life decisions for my mom that I need to make over and over again are emotionally difficult. I keep reminding myself that my mom is suffering, trapped in her mind with a body that is declining. Telling the nursing home not to do anything extraordinary to keep her alive is a challenge. "Comfort measures only," is my repeated request while I dance with mom and wait for her final day on Earth to come.
It would be so much easier if my mom hadn't lost her mind and could communicate her wish about life or death herself. It would be so much easier if she had a terminal illness like Cancer that would take her quickly. The long and slow drawn out end of life that comes with Lewy Bodies Dementia is brutal for everyone.
Lewy Bodies has ripped my life apart. Few family members in site; I get angry. I have trouble understanding why my Mom and I were left alone to face this horrible illness. I needed to understand so I formed my own conclusion to give myself some peace. I am now of the belief that my family doesn't know what to do or say; heads in the sand like an ostrich is easier than facing the long and slow death of our Mom. I often wonder if I too would be scarce if one of my siblings was caring for our mom instead of me.
I have learned something through this heartbreaking journey with no happy ending, it takes courage to drop ones ego and replace it with compassion. Compassion for others is possible, it can be done... I am doing it. Me! The girl with the ego the size of Texas.
Bittersweet, I wait for my mom's end to finally arrive while I cherish her good days; days that make her life decisions much more challenging for me.