This week I learned that being transparent doesn’t have the same meaning to all people. I did not know the word “transparent” held such negative connotations in the work world of many organizations. Since my experience with workspaces is limited, if you took offense at my word, please forgive my poor choice. Authentic is apparently the word I should have used last week. According to Dictionary.com:
- not false or copied; genuine; real.
- having an origin supported by unquestionable evidence; authenticated; verified.
- representing one’s true nature or beliefs; true to oneself or to the person identified.
- entitled to acceptance or belief because of agreement with known facts or experience; reliable; trustworthy.
Yes, I want to keep it real. There is a beautiful woman lying in the chair beside me who has been physically reduced and mentally eclipsed by injury and disease. It is my intent that others sitting beside those they love, caregiving to the best of their ability, not feel alone or isolated. The nature of what we do is being in solitude, but I believe it helps to remember there are others going through a similar process.
As caregivers, there are concerns that plague us others may not understand. Although I can watch for Mom to wake up on the “nanny-cam,” and work in the other room, I am far more comfortable working on my computer beside her so I can attend to her instantly. During the night, I wake often to check and see if she’s still okay. I tuck her in and lay back down only to go back to her side at the slightest moan. As she drifts further away, her ability to communicate becomes more difficult and I want her comforted by my presence.
Moments of clarity bring overwhelming feelings of hope. Yes, I know exactly what happens in this disease. I know the progression is only a downward slope. When she remembers my name, however, my heart soars. Maybe it was a temporary lapse of memory that caused her to forget me. The reality is that the clarity is fleeting and my heart breaks all over again when she doesn’t recognize me.
The reality for me and my family and countless other families all across America is that our loved ones have crossed over mental clarity and operate only in a fog. Unless you have experienced that loss, it is impossible to understand fully. Like childbirth, it’s indescribable. For those who have been through it, there is a kinship of recognition and support for the process. Just as mothers recount the difficult process of labor with other moms, caregivers share a common connection. Of course, the huge difference is that mothers take their babies out to show them off to the world and begin the process of connecting them to the wider world. Caregivers of dementia patients find their world shrinking.
One of the hardest parts of caregiving for me is how life goes on. Changes occur in the world that forever change our common perspective but don’t influence Mom. Children are born and she doesn’t share the joy with me. Actually, she does share the joy of the moment, but then it fades quickly like a dream. Although she is here, right here beside me, she is lost to me in so many ways. I miss her like crazy.
Maybe I say that too often. For those whose mothers are deceased, perhaps it is painful to hear me say how I miss her when she’s still here. I cannot imagine how much more difficult it will be later. I am too deeply mired in the moment to look far ahead.
Matthew 6:34: NIV
Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own.