Every Heart Transplant Caregiver should know: “Every patient is different and every situation is unique. Be prepared for anything to happen, and be aware that there isn't a typical timeline for a return to good health or if that will even happen. Allow your family, friends and medical staff into your inner circle so you never feel that you are alone in being the caregiver. Pray for the best, prepare for the worst, and believe that every day is a new day. “
As a caregiver I wish I would have known: “The weight of being the caregiver to a sick patient can be overwhelming. The medical and personal care of your patient might be only half of your responsibilities as caregiver. Maintaining a strong spirit of positivity is critical and can be contagious to the patient and family. It's okay to have weak moments and loss of emotions at times, but being a caregiver with strong determination and devotion will always shine hope on what might otherwise be situations with unknown outcomes.”
The most difficult aspect of being a caregiver: “For me, it was giving up "control" and leaving the patient's room even if it was for short durations. I always wanted to be available when a medical provider was in the room and at times there was a lineup of doctors and nurses waiting to do their jobs. I thought that I would miss something even though the nursing staff was always proactive in giving me updates on something I missed. A feeling of complacency also was in my mind as the patient started to recover but still had episodes of setback. Because she had had two significant setbacks, the feeling that another might occur always was there and maybe caused my anxiety of leaving the floor at times.”
The most rewarding aspect of being a caregiver was: “Looking back at the diaries and social media posts I made to update friends and family across the US on the patient's progress and then realizing the unbelievable journey she took and survived. Living it day to day was certainly memorable, but to see it again from a perspective that most people saw as big changes and improvements made me realize the inspiration she gave to many in her toughness and survival.”
I was most surprised as a caregiver by: “Even though the science of medical procedures is unbelievably technical and a patient must put themselves in the best place to receive the best care, the human body and the person's will to fight to live are equally as important. With all of the best laid plans and courses of care set for the patient, the strength, determination, faith, and recognizing that there's an army of people praying and cheering for a patient to survive and get on with life helps to make miracles happen. To work for the best outcome, the caregiver should be prepared to place your life on hold and focus on the patient's health, survival and recovery. With the difficulties they face every minute of every day, being there and committed 100% to their well-being will help the patient prosper.”
How I would recommend other caregivers prepare for this experience: “Place your trust, confidence and love in the medical care team. Be INVOLVED in the care plan and daily activities surrounding your patient. Strive to learn as much as possible and ask questions of everybody to ensure full understanding or remove doubt in your mind. Don't be afraid to leave your comfort zone, and just make up your mind that you'll do every task expected of you even though you don't believe you can do it (change medical dressings, clean wounds, observe a patient with tubes and machines attached to every inch of a body).”
How I would recommend other caregivers to take care of themselves during this process: “Keep a daily diary or use social media posts to your private group to share daily activities, emotions and events. It's a great stress reliever, promoter of understanding to a civilian in a medical world, and is an invaluable record of the incredible journey that you and your patient have undergone. The bonus is that your patient will really appreciate seeing exactly what they experienced and catch them up on the days, months, or years that they missed.”
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