Who cares for the caretaker?
We are driving to yet another doctor’s appointment and I cannot help but notice the other families in their vehicles. They are living a normal life, driving somewhere better then where we are going. I want to jump into their place and time.
Daily we are surviving, just hanging on, and questioning what purpose we all really have here. We are grieving, as we suffer through this illness. We are all victims, and our entire family has lost so much.
Grieving occurs when we suffer from a significant loss. We have all lost so much, yet in order to get well enough to manage throughout our lives, we must address and go through the grieving process.
When life takes on such a drastic change, you mourn the old life that you once had and find a way to accept what has been put before you.
I am mostly a caretaker. I have always been well enough to help everyone else in my family whenever they were at their worst. As many other caretakers are aware, it can be a very difficult task. Not only have we lost much of what we expected our lives to hold but we have also had come to terms with a family that no longer exists. We are grieving.
These are the stages of grief from the caretaker’s view:
Denial– We all have our stories of visiting specialist after specialist, without a viable outcome. This task may weigh heavily on the caretaker, who may have to then consider such questions as: At what point do we give up? Do we say that this is not tick-borne disease because the nine specialists that we’ve seen claim it’s not? We know in our gut this is a fight that we cannot give up on and we become the spokesperson, advocate and investigator.
Anger– This is an emotion that is not only normal, but often results from depression. As the caretaker and mom, I most often set the tone in the house. If I walk around projecting anger onto others, it only creates more stress for all of us. Funny, but that has also made me angry at time. If I want to stomp around like a kid throwing a temper tantrum, why shouldn’t I be allowed that privilege? Anger is not bad; sometimes it feels great to be angry; to get it out there. Anger just needs to be harnessed and used properly for the right outcomes. We don’t want to project our anger onto others. I have screamed at God for many hours and asked such questions as: Why did this happen? Where are we to go from here? Why were we created, if we are to suffer so much? I encourage you to use your anger to create positive actions; motivate you, dig deeper or rectify a situation.
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Bargaining– We try to regain control of what was lost. It is easy to become obsessed with finding a “cure” or a new reason for our latest symptoms. I even tried bartering with God to take my life if he could give my family their health back. Gratefully, he ignored my request.
Depression– Life is overwhelming for both the sick person and the caretaker. We have had to stay strong, vigilant and dig deeper into our faith or belief than we ever would have thought. My mantra during the most difficult times with Lyme was the hymn: Be Not afraid-“I go before you always, come follow me and I will give you rest.” I would hum and sing this hymn hundreds of times throughout the day whenever I needed to. I thought that it spoke to everything I was feeling, including fear and physical and emotional exhaustion. I joined a caretakers group and accepted help when it was offered. I would walk, remove myself from the ongoing crisis for a bit, and try to do little things to give myself time away.
Acceptance– How could I, as a mother and wife accept this new “normal”? My son was no longer the bright, active, happy child that I knew. He was sickly and severely depressed with the fear that he may not survive to see his dreams and passions ever begin to flourish. My husband was in a hospital bed 98% of the day. I had never felt so scared and alone as I did during this time in my life.
Somehow, with time, we were all able to accept the “new normal” where we were and where we were all headed. It came with as much healing physically as it did emotionally. As a family, we have been through several years of individual and family counseling.
As the illness may continue to flare throughout our lives, those suffering with tick-borne disease, along with their caretakers, may go through these steps several times. We may also get stuck in post-traumatic stress disorder (PTSD), which is an anxiety disorder that may develop after exposure to a terrifying event or ordeal in which severe physical harm occurred or was threatened.
We are bloody soldiers returning from the war of all wars. We finally have some sort of diagnosis and treatment plan in place. Maybe the stricken are getting better, but as we all know with TBD disease, you may take one step forward and then suddenly find yourself in a mine field trying once again to navigate your way out.
Often, whenever my son or daughter would show signs of going backwards, I would put myself back into a place in time when we could not get answers or have any hope. I would panic, think the worst and then put everyone else in the same place that I was. I really had to force myself to once again look how far we had come and realize and hope that the worst was truly behind us. Then I would go hum my mantra “Be not afraid”, and know that somehow, we would all pull through this.
Tammy Studebaker is a marketing representative for a health and wellness company. She is on the Board of Directors for the Lyme Disease Association of the eastern shore of Maryland and runs a support group in Centreville, MD. Her daughter has multiple food allergies and her son has Celiac disease. Tammy has presented and offered cooking classes at Whole Foods over the past several years and has written blogs for several different publications. She also presents motivational programs to teens and presents programs to adults on the process of accepting their “new normal” and surviving illnesses. Her entire family, including herself has battled tick-borne disease.
She attended RIT (Rochester Institute of Technology), where she pursued her Bachelor’s of Science degree. Tammy has worked in the retail field as a district manager, trainer and recruiter. She helped launch and grow a food allergy non-profit /ELL.