We usually talk about Chronic illnesses and treatment, management, awareness, etc. But, for a moment, let’s talk about others effected by the disease — family and especially caregivers.
No matter the patient’s age, or the specific illness involved, a Chronic condition effects more than one. Family members must also cope. Some may worry about genetic factors. Others may feel guilty, if they live far away. A few may have difficulty accepting the diagnosis at all. Caregivers, God bless them, are juggling everything — the needs of the patient, the family, doctor visits, medications, work, etc.
It isn’t unusual for a caregiver’s life to be drastically changed, by their new role. Some will put their careers on hold — hoping for a return to normalcy in a short time. Others literally see their professional careers end, as the role of caregiver consumes every minute of their day. Many allow their own health and well-being to go on the back-burner. This often creates additional health issues (for the caregiver). Weeks turn into months … then into years. It takes a toll. The caregiver finds himself or herself doing things they had never imagined doing, i.e. administering shots, buying diapers for a parent, protecting the patient’s rights, or watching a child suffer with pain. There is nothing easy about being a caregiver. It is a very mentally, physically and emotionally challenging role. And previous experience in no way means that you are adequately prepared for being a caregiver, again. Each patient, each illness, is different.
“And now these three remain: faith, hope and love. But the greatest of these is love.” — 1 Corinthians 13:13 NIV
Twice, in my life, I have had the privilege of being a caregiver. I use the word “privilege”, because in some ways it was rewarding, i.e. close-knit talks, deepened relationships, special moments, etc. It was also highly stressful and at times downright scary. My first experience as a caregiver was for my father, 1989-1990, as he battled cancer. The second for my mother, in 2008, when she battled cancer.
Despite the common denominator, they were two vastly different experiences. My father was terminally ill, upon diagnosis, with lung cancer. He ate anything that he wanted and pretty much did anything he wanted, until his death. No medications to administer (seriously). No use of oxygen (seriously). His radiation treatments also went well. He truly lived every moment of life to the fullest. We should all be so lucky. I realize that, now. But at the time, I lived in high anxiety of what might happen. My mother was just the opposite. With Mom, everything that could go wrong … did go wrong. I charted over 20 medications, daily. She had every unusual side-effect to chemotherapy that a patient could have. No nausea or hair-loss (seriously). In the end, she was beating the cancer but succumbed to the worst of these side-effects (a pulmonary embolism or blood-clot). It was frustrating and heart-wrenching. The last thing that she asked of me was to sing. So, I sang … and sang … as she drifted into an unconscious state … gasping for every breath. I would rest for a couple of hours and start singing again … tears streaming down my cheeks. Then, I’d pause … pray hard … and sing some more. This went on for 10 days. And by the grace of God, I managed. I was with her, voice and all, till the end.
If you know a caregiver, then you know the love that he or she so unselfishly gives. You may know a few of the burdens that they are carrying, i.e. responsibilities to the patient, their family, their job, etc. You may even know some of their fears. So, please, let them know that you care. Offer to sit with the patient, for a couple of hours. Ask if there is an errand that you can do for them, i.e. pharmacy, supermarket, etc. Drop by with a warm casserole for dinner. It may sound silly, but you’ve just taken a task off of their “to-do” list. You have lightened their load and offered support. Many caregivers will never ask for any help. They have their reasons. And, often times, they will neglect themselves before they do. But you can give them the little boost that keeps them going. Because without that caregiver, rest assured, things would be much worse. So, give them a break … a hug … show your appreciation … share some love. They need it, as much as the patient does!