Respite for the Caregiver
Sometimes life can slap you in the face with the unexpected. The diagnosis of severe spina bifida and hydrocephalus our daughter was given at birth sent us reeling. Words of impending death were spoken again and again. We were grasping for anything to give us hope. Friends surrounded us and family soon traveled to join us. Each day presented new challenges, as we were thrust into a world of medical decisions, complicated situations and confusion over the issues we were facing. Feeling totally inadequate, we entered a life of caregiving for our daughter.
What doctors never imagined was that our daughter would defy all the predictions and live a life of many, many trials but also a life filled with music, smiles, giggles and joy. This “new” life brought more challenges than we could ever have imagined. If you find yourself thrust into the role as caregiver these suggestions may be of help to you.
- Don’t let pride stand in the way of accepting help when offered. When our daughter was born our neighbor Jan came over and asked my Mama for the laundry. Jan insisted on doing the laundry for our family for months until I finally asked her to take a break. But she was a tremendous help in keeping our family functioning. If you find yourself an overwhelmed caregiver, don’t turn down help even in the simple things.
- There are some who will fall by the wayside when confronting your circumstances, and there are those who will stick by you and help if you’re willing to let them. Sometimes it was difficult just being alone in these situations. Friends and family were a comfort by just being there with us.
- Some people offered help with our boys when our daughter was hospitalized. It was not what I wanted at times but they willingly did it because they wanted to help. Our sons were cared for and often were with friends’ families.
- Grandparents are an invaluable resource. My Mama came to Florida and stayed with our boys and kept them in school many times. My mother-in-law came and spent time with them as she could and was a great help. It helped to put my mind at ease that my sons were being cared for.
- Keeping our daughter sometimes required that I learn to do certain medical procedures. I learned to insert a nasogastric feeding tube through her nose. This was one of many procedures my daughter needed that I learned to do. Many people prayed for us and prayer was an avenue of help during the really hard situations and decisions we faced. The stress was sometimes tremendous, but learning to do some of these procedures saved us from many trips to the doctor and allowed us to keep our daughter at home.
- Put your innermost thoughts and experiences in a journal. From the beginning, several encouraged me to write down the things we were going through. Sometimes I have even recorded things on my phone as a way of remembering them. As with prayer, there is something healing about putting down your true feelings. Sometimes you can write things that you’re afraid to say out loud. When shared, you may help someone who needs to know they’re not the only one who feels this way.
- Treasure the days. Celebrate the happy moments. Our daughter was a happy person, often smiling or laughing even though she suffered many ailments. One year on her birthday while in the hospital, my sister came bringing gifts for my daughter and me. It brightened Carrie’s day and meant the world to us. We learned over the years to appreciate every day that we were given.
You may not feel prepared to deal with the complicated situation that thrust you into the role of caregiver. Some will offer their love and support. Accepting help from those who are willing and using the resources available from health care workers may help and lessen the struggle. Prayer, writing and sharing our experiences will help us to release some of the anxiety and pressure of giving constant care. By treasuring the good days you have with your loved one, you may lighten your load and bring a small respite to yourself as a caregiver.