I spent the holidays last year in a state of survival. I was “getting through” each day. When the holidays came, I just went numb. I tried to not be a “drag” and I put on my best face. Those days have failed to become any kind of holiday memory. I couldn’t tell what I did on any of those “holidays”. Maybe, I blogged about them. If I did, I need to read those entries to know where I was and what I did because I truly do not have the faintest clue.
This year, the numbness is off and I feel the emptiness and the loneliness more acutely than ever. Today was past “hard”. In many ways, it was unbearable.
I spent Thanksgiving with my younger sister who is afflicted with dementia. She has Down’s Syndrome and it isn’t uncommon for people with Down’s to develop dementia should they live into their middle age years. So it is with my sister.
It seems that Dan’s death uncovered her memory loss. Even though she attended Dan’s Memorial service, she forgot about his death until this past July. When I met her at the doctor’s office, she asked about Dan and how he was. I told her that he died and, from that time to this, she has been in a state of inconsolable grief.
Her grief isn’t just for Dan. It is for all of the losses that has been in her life. We lost our mother in 1990 and Dad in 2001. She went to live in the group home a few years before Dad died, but she never accepted the group home as her home. Now, it is more clear just how much she never acclimated.
For the past several years, it seemed that she adjusted to living her own life at the group home rather than live a peripheral one through our parents. Life with Mom and Dad was a secure one. Her disability placed her at the center of my parent’s life. At the group home, everyone there is like her. She isn’t the “princess” and she misses the life where her wants and needs were met without having to share the lime light.
Every visit with our older sister or me, she would always thrill when we passed the sign for the city limits. A huge sigh would escape her and she would say, ” I am home.” Now, when she comes to visit the thrill has become a desperate desire and she says, ” I want to live with you.”
She reasons that Dan’s death opened space for her and she should live with me on the family farm. I know that I cannot take care of her and work. I can’t give to her the dearest desire of her heart and the guilt compounds each time I see her. It makes finding joy in the midst of such unhappiness overwhelming at times.
As she tries to process Dan’s loss, she is reliving the loss of our parents as well as other losses. Our older sister has Multiple Sclerosis and, due to her health, had to sell the “home place” and the family business.
When she visits me, we turn directly in front of the house in which we grew up. Because she forgets that the house was sold, each visit causes her to relive the shock of seeing people living in her house. Each time, my eyes well up as I watch her tears roll down her face. Each time, I am reminded of that ache that comes to a heart after loss and the guilt compounds.
It is the same when she passes the location of the family business. She sees strange cars there and she insists on stopping. As I try to explain that our older sister had to sell the “plant” and that we cannot stop, she asks, “Why not?”. She wants to go inside and sit at the desk that was once hers.
She tries to hide the tears and frustration, but lately, she cannot contain her disappointment or her anger and fear.
Her bewilderment at the changes in her life only exacerbates the cloudiness of mind that dementia brings. Dan’s death, the sale of the home place and the business, each one would be hard for her to process, but now, she must try to work through these great losses as she struggles to remember the most simple things.
Where she once was independent in caring for herself and her personal needs, now she requires supervision and encouragement to stay on the smallest of tasks. As she roams from room to room, she knows that something is wrong. She shakes her head and says, ” my brain…” or she will sit on the couch and blankly stare and say, ” what’s going on?”
I didn’t take her to the family Thanksgiving dinner today. In the last few weeks, an uncle and an aunt were diagnosed with cancer. I knew that, during the dinner, my sister would learn of their illnesses and she would become hysterical.
When my sister hears the word cancer, she immediately starts to cry, then sob, then wail…loudly. To her, cancer and death are synonymous. Our mother died of cancer, Dan died of cancer and so many others in our family have succumbed to this terrible disease. In my sister’s mind, Cancer=Death.
Her display of raw grief is hard to watch. Because the diagnosis for our aunt and uncle is so recent, I didn’t want my sister’s sobs to add more emotional stress on my afflicted uncle and aunt. My sister cries so hard that small capillaries will break in her face.
All of this takes a great toll on my sister, on me, and on the staff at the group home. After the visits home, my sister’s behavior is becoming more difficult for the staff as she acts out her anger over the uncontrollable events of her life.
Call me a coward, but I couldn’t emotionally handle the nakedness of my sister’s expression of grief. I am not strong enough to help her process the natural question of “Why?”. The depth of her losses is so much greater than mine…and I wonder how, or even if, my sister’s grief can be managed as her own ending is approaching.
Thankfully, she forgot that today was Thanksgiving and I cowardly chose to avoid the pain instead of walking through it. Instead, we ate at the local Cracker Barrel. While we were eating, I realized that she didn’t remember having dinner at this restaurant the night before with our older sister. Her short-term memory has worsened since her last visit four weeks ago.
As the holiday season descends on us, it feels like a dark cloud that must be endured rather than celebrated. I can redirect my thinking, but my sister can’t. My sister is lost in this fog and I know that her time here on this earth is ending.
I cannot remember how it feels to be “merry” or “happy” anymore. These days are a continuing reminder that the world as my sister and I knew it has ended….and her ending is fast approaching .
I suppose I must discover a way to gain through loosing. It is such a confusing concept, yet it is the only way to walk out of these shadows. I just wish I knew where to begin walking through this loss. Maybe, I need to look for A Star to guide me.