I started my blog in January with a stroke of inspiration. I didn't know what a blog was or have any idea how to set one up, but before I knew it, I had a blog. Fear settled in as my ego took over, kicking and screaming over the fear of new things and the risk I wanted to take by writing a blog! Just who do I think I am trying to right and publish my thoughts, my inklings and whatever inspiration might come my way? I would like to say I laughed in the face of my fears...but no...I stayed stuck, frozen, and afraid to move, but life has a way of waking you up and making you move forward in ways you least expect. I like to think I embrace change, but sometimes, when I get stuck, I unwittingly extend an invitation for a kick in the butt to keep me moving!
Life is changing (again) in a big way for me and when that happens, I somehow tend to be less afraid of walking into the unknown. With great transition, little changes seem to carry less risk. Facing death (more about that in a minute) tends to make me want to celebrate life. So in honor of and celebration of Life, I have decided to take bold new steps...here on my blog. I AM HERE TO HAVE FUN! There will be times, when what I have to say may not feel like fun, but isn't that what a real diary is like? A place to sort ones thoughts, a place to find your inner wisdom and transmute daily events to inspiration and even sometimes, wisdom. It's all in the journey!
Warning: I don't tell short stories, I tend to ramble a bit - learning towards what we call in my family, "the Julia version" - because my mom always wanted to give the big picture, before she got to the meat of the matter, and unfortunately, losing a few listeners in the process. I will be mindful of that tendency, so bear with me.
My beginning is, not surprisingly, motivated by an ending that is approaching. This is the Circle of Life, you know, life, death, life....endings and beginnings overlapping and irrevocably changing the face of reality as we know it. I am the daughter of parents who both have dementia. It is a description that has become a part of who I am, part of the sum of my experience. I take care of them, among the other things that comprise my busy, full and happy life.
My Mom has dementia and late-onset schizophrenia, previously misdiagnosed as Alzheimer's. Hers is a slow moving dementia and she is surprisingly aware of many things that you would not expect in a 79 year old woman suffering from end-stage dementia for 5 years. She is amazingly fit and quite honestly, is my hero! I have learned such amazing things about her that I never knew...and needed to know...and that helped me discover the gems tossed on this sometimes rocky path I call my life. Those experiences make you thankful for this journey, this combination of experiences that make up my life, no matter how ugly or difficult it may seem...The Magic in the Moments.
It's harder to describe my dad's condition - frontal lobe dementia. It is newer, diagnosed in 2005, and given a life expectancy of one year. Frontal Lobe Dementia starts by robbing one of the executive functions of the brain, the ability to make sound decisions, to balance ones checkbook, to plan, to understand right from wrong. He quickly moved from living independently, to assisted living and now to nursing home care. It has affected his balance and his ability to walk. He falls, often, despite all preventative measures and has had more stitches to his face from fall injuries in the past 2 years than in his whole life. Sometimes, he's not there, kind of a creepy morph of my daddy, and other times, more often as he approaches his ending, my real daddy trapped in his body and aware of his own illness.
It would not be a fair description of their illness if I didn't address their amazing love for each other that transcends their illness and touches all of us who are witness to their great love. My parents have been married for over 55 years and did a lot of things together, so it shouldn't have been a surprise that they did this together too. I remember one day (one of those magical moments I get to witness) I took Dad to see Mom when they still lived apart. Dad could still walk but was slow and unsteady. I told him to wait and I went to get Mom from her locked unit at the nursing home. She walked out with me, with that Alzheimer's shuffle, kind of like Tim Conway's Old Man character, and saw him. She started walking faster and he walked towards her. It was like a Geriatric Lovers Running in the Field moment as they shuffled towards each other, their eyes lit up for each other, and when they reached each other, they held each other's hands and kissed...it was a magic moment! I swear to God, everyone in the reception area, stopped what they were doing and watched them...there wasn't a dry eye in the room...an overwhelming experience to witness that kind of love...their soul connection that transcends time, space and dementia! That was a year ago. Today, my dad can no longer walk. They are now in the same nursing home but in different wings for their own safety. Mom knows when something is wrong with my dad...she just knows! Recently, they seem to get sick at the same time. We were recently in the emergency room with my dad who needed stitches to his forehead from another fall, and the nursing home called me to say Mom needed to be transported to the ER for her low blood pressure! I made sure they sent her to the same hospital I was at and thank God for my sister who took care and stayed with Dad while I stayed with Mom that evening. They were both back at their home within 10 minutes of each other after a long night in the ER. It was an amazing experience, frightening and stressful, but still amazing!
I just left my father's bedside at his nursing home. He is nearing the end of his life. Today he has been having seizures, a strong twitching, jerking in his face and arms that medication does not relieve - it only takes the edge off the discomfort and stress of not being able to stop or control his body. Sleep is his only relief. This disease has robbed him of his mind, his control over his body, but it has not robbed him of his spirit and his love for my Mom. Yes, he still knows us, his kids and he loves us, but his love for Mom sustains him and in my opinion is what is keeping him here - oh, that we all get to experience that kind of love!
So all we can do it help him be comfortable till the seizures pass, today being the longest they have lasted - over 8 hours. Medication helps and so does prayer - that's comforting to him because he still knows and experiences the power of prayer! So today and tonight, I sat next to him, my head on his chest, seeking to bring him comfort and peace the only way I know how - prayer. I believe in Angels....so does he and so we called in for extra help. He can barely talk, but he joined me in prayer and we called in Angels to surround his bed and bring him light, comfort and relief. I know that when I left him, tonight I left him safe and sound. He was still twitching, but he was breathing easier and fell asleep with the knowledge that he had nothing to fear. I believe he knew that. I believe it myself and that's really all that matters.
So we have endings and beginnings going on here. My first blog...a beginning and a place to share thoughts, inspiration and even sadness. My acceptance of my father's coming transition and to be able to put that out there signifies an ending for me - the end of the fear that strikes the heart of children, young and old, when we are faced with the loss of a parent. Death is a transition we try to hard to avoid...but really, it is a graduation of Spirit. So in honor the Circle of Life, the everlasting cycle of life, death, life and my own personal endings and beginings that I see on the horizon, I begin this fascinating and fun experience of blogging. Thank you for stopping by. More later....in the meantime, look for the gems of life along your path...you have to notice the magic life brings to find the gems.