Stress. It can manifest itself in many different forms. Years of research has determined not only can it cause health issues, personality changes, and loss of sleep, but it can also change the make up of our very chromosomes.
Being a caregiver is arguably one of the most stressful life events. And it can last anywhere from a day to decades. Sometimes it involves caring for more than one person. Sometimes it determines your career path, your friendships, your income, your mental state, your health, your ability to think clearly and your ability to care for yourself.
I have often described my time since Jim has died as a period of self growth and extreme sadness. I also have been adamant that many of my symptoms have been the same as those describing Post Traumatic Stress Disorder. So I take time to think back through the years of caregiving and try to determine what I could have done differently. What could I have done to change my “post Jim” life? Could I have saved myself from all of the agony and these multitudes of emotions and the trauma I experience daily? How can someone who is barely hanging on, sometimes for years, have enough foresight to focus and work on creating a better life for the future?
It is difficult just maintaining sanity and keeping an emotional grip as you watch your loved one slowly morphing into a stranger let alone try to figure out what you will do for yourself after they are gone. And who knows when that will be? Some days it seems like never. Some days it seems like any minute. The ups and downs, the not knowing, the waking up each day having no clue what is just around the corner, the loss of friends and family, the loneliness and heartache. It all adds up day after day after day. And yet, we are supposed to have patience and understanding and know just what to do when our loved one doesn’t know us or yells at us about something we can’t determine exactly what for or they wander incessantly and obsess about finding an item that was long ago gone from your home. We are expected to fill out paperwork and keep track of meds and keep up with laundry and the house and bills that were due last week. We are supposed to child proof the home for our spouses and our parents. We are burdened with determining if they are still able to safely drive or live alone. We are forced to cancel plans last minute because they call franticly about not being able to figure out how to work the remote control. It is laughable that at some point during all of this chaos and worry and isolation we are supposed to figure out a way to take time for ourselves, to give ourselves the same care we give our loved ones.
I have not come up with something I could have done differently to avoid these symptoms of PTSD. I couldn’t have slept more. I couldn’t have stopped be present for the changes in Jim. I couldn’t have rid myself of the worry and the anguish that enveloped my every waking moment, and even some of my sleeping moments. I couldn’t have taken away the pain I watched our children suffer.
But I can talk about it. I can share our story. I can let others know they aren’t alone. I can help educate people to possibly change the stigma of dementia. I can bring awareness about PTSD in caregivers and acknowledge caregiver burnout as a real thing. But it takes many voices. We all need to be heard. We all need to get help. We all need to help each other and find ways to change how caregivers are treated.
The loss of a loved one doesn’t magically get easier or better overnight. The pain is felt for a long time. And the repercussions of being a caregiver do not disappear quickly. It takes time to heal from all you have witnessed, all you have felt, all you have thought and said and done. Time does heal wounds, both emotional and physical, but it doesn’t necessary forgive. Only you can forgive and let go. Start today with helping yourself find your path and no matter where you are on your journey, let the healing begin.