Often I have a sense about a person or circumstance. I seldom verbalize it, however when I do and it is confirmed the ‘Ole Buckeye gives me one of “his looks”. I have premonitions about happenings. I am extremely intuitive and often formulate my feelings about a person or event based on my intuition. Some may call it judgmental, others something else, however over the years it has been accurately confirmed time and again. It is my sixth sense.
Over the past months I have been concerned about my sister. Over the past weeks that concern has turned to uneasiness. She is fighting a battle that only she can understand. Her husband suffers from dementia. The disease has had a slow progression over time, so slow that my sister did not reveal his condition and her own struggles until his situation could no longer be hidden or excused.
First you must understand that my sister took on a lengthly road of “caretaker” long ago when our mother could no longer care for our father. I am now certain that our mother attempted to care for dad long after she was physically able. She was committed to him out of love and it was not until she nearly physically and mentally broke down that we were forced to step in and take immediate steps to move them closer to one of us. My sister Jan volunteered. They would be moved back to an area close to her and close to where we grew up, an area with familiarity.
At that time I know that we other two sisters were not in a position to offer the same support that Jan offered, however, it could not have been easy for her. She was a God send to our parents. I have never been aware that she had any regrets about her decision. I know there must have been many times that she wished she had had help and that we had taken on some of the responsibilities. But we didn’t. Sure we visited. Sure we helped when we were there, but we were seldom there. We all had busy lives and she was close enough to handle their needs. She never complained. She was always positive. A very special bond formed between my parents and Jan. Hopefully that bond made any trials she experienced easier. I often yearned for that same bond, but I have come to realize over the years that each of us had our own special and unique bond with our parents.
After our dad’s death 11 years ago I so hoped to do some traveling with my mom, have her stay with us off and on and take some of the load away from Jan. That was not to be. Shortly after dad’s passing, Mom was diagnosed with multiple myeloma and underwent radiation and chemotherapy for a long period of time. She was in and out of rehab and once again Jan became her caretaker. Once again her life was wrapped up in someone else’s.
My mom joined my dad 7 years ago.
I think it may have been shortly before Dad’s death that varying symptoms became apparent with Jan’s husband. There were a variety of heath issues, investigations, and finally a diagnosis which she did not share. Unbeknownst to me she would no longer be the “caretaker”, she would become the ultimate caregiver.
The accepted definition…A person who takes care of another in the general sense or looks after someone who is severely physically disabled and/or mentally ill and is not able to care for themselves.
Using my personal understanding, I define it in a different way…a watchperson. Sentenced to watch as another gradually fades away not only physically, but mentally.
How can that not affect your sanity. How can you not succumb to depression and loneliness? How can you not cry out about the unfairness of it all?
Although I have a nursing background and have dealt with illness in more critical care situations, when faced with the prospect of daily living with my partner who is no longer aware of past, present, or future, I am fairly certain that it is not within my realm of ability. I could not do it and if I was compelled, I am afraid that I would fail miserably.
I know that over the years Jan has had to release control and find an inner peace. She meditates. She turns inward. I sometimes wonder if she feels like she is in a dark lonely tunnel with no way out.
Jan and her husband recently built an addition onto their daughter’s home. They made the transition to their new home last fall. Jan is now surrounded with her grandchildren and a comrade of a daughter. All of that being said I still feel that she fights the overwhelming darkness of it all.
Jan has been very quiet over the past weeks. Last week she reached out. She posted a blog. It was not about needing help. It was more about the need for understanding and the acknowledgement that she is present, struggling, coping, mourning, grieving, while still living, enjoying, hoping, adapting, managing, and accepting.
It strikes me that even though we are family, sisters, we really only know each other on that level. Our history does not include so many of the experiences or relationships we each have had over time. Although we lived together under one roof in our beginning years, for most of our lives we grew separately. Oh yes, we get together off and on and have reconnected, but for short bits of time. We have not walked in each others’ shoes. We have not shared the same life experiences.
In her recent blog post, Jan talked about challenge and retreat, wrestling and caregiving, loosing control, and loosing a partner. She writes, “Sigh. My heart breaks. As he loses strength I try to gather my strength to face his loss or his slow goodby for years to come.” She apologizes, “Sorry for the bummer.”
This is what I read between the lines…I may be quiet and pull back, but I am coping in my own way. Sometimes I tread water, sometimes I swim, and sometimes when I feel like I am drowning I need someone to throw me the ring so I can catch my breath. When I reach out, it is not because I am giving up or feel like I am loosing the battle…I reach out for understanding and support. Simply hear me and know my struggle.
I cannot possibly know her daily battles within herself. Her labors of love. Her walks between pain and peace. She is stronger than I, in so many ways. She has learned so many lessons that I have not. I am often amazed at her serenity and acceptance. Her inner peace. What I have come to realize is that it has been honed over the past 20 plus years of caring for those she loves. During that time there must have been many thoughts and feelings shared between she and they for whom she has given care. All of that has given her a perspective that most will never have.
My sister retired early. She was an educator, a teacher, and an administrator. When she had the opportunity she vacated that part of her life. She filled her time with many things that she loved and spent time with her husband, and time with our parents. She became a caretaker, but she never let that define her. She took care of herself not only physically, but mentally. She also took art classes and honed her skills to extraordinary levels. She never receded from life, but made her life into something she enjoyed. She took contentment in the simple things. She made peace with herself. In so many ways, the past years equipped her for the now.
I would never pretend to be able to walk in her shoes and truly know how she feels. I do know that she inspires me. Unknowingly, she motivates me to take a more unselfish look at what lies ahead and the decisions I will make with the time that I have. For that I will be eternally grateful.