The caregiving experience of a family member caring for a loved one - and the ability to cope with it - is greatly influenced by their relationship and rapport. This was the case in 2 distinct roles in which I’ve been involved, each one unique and special in its own way.
My first taste of "official" caregiving happened when my sweet Dad was diagnosed with multiple myeloma. My brother, sister, mother and I pooled our time and talents to research this rare form of blood cancer, to follow the doctors’ instructions regarding care and diet, and to support our beloved father in EVERY way we could. We did what came naturally to us: we showed our love and respect for an amazing man and father who was still full of life, compassion and kindness. We created a lean machine of support whose sole purpose was to help Dad get better. A sense of duty and loyalty to the person who always stood proudly by us from childhood to that very day moved us willingly and effortlessly from task to task. He had been a wonderful father to all of us - and was so loved by many. It was the least we could do for him and we did so gladly!
As my father’s health seriously deteriorated during his last 2 months of life, my husband started having symptoms that were hard to ignore. Pain in his right big toe spread to the entire foot within 3 months, to the point of leaving him unable to stand on it. Two months later, he was diagnosed with CRPS, used a cane to walk and withstood intense pain along with assorted sensations in his limp foot and up his leg. Exactly 1 year after the initial symptom, he had to retire on disability because the extreme pain prevented him from concentrating on his work. The disease’s incredibly fast progression impressed all of his doctors and drastically changed our life. Change, however, was not all bad.
From the beginning of this mysterious CRPS, something we had never heard of, my husband and I approached this chapter in our life as partners on a team. We were determined to succeed at whatever came our way! Together, we were going to deal with this! Unlike the love and sense of duty that moved my siblings and me forward with Dad’s care, being partners and having each other for support as we faced a common challenge kept us strong and focused. As his wife, I would care for him as he needed - "in sickness and in health." As my husband, he had cared for me for almost 30 years, and provided shelter, love and support to our family. It was our turn to give back.
Never in a million years would we have ever imagined spending what would be our retirement years dealing with a disability! We, as realists, accepted our destiny at the beginning of this journey. However, we don’t dwell on it or let it dictate our happiness. It hasn’t always been easy, but with positive thinking and determination to overcome obstacles as best we can, we have managed to create a new life that includes many happy moments.
This is what has given us the strength and courage to put this illness in its place, and to make room for a new and meaningful life:
- Re-evaluate what’s important
- Remember that we love each other
- We are a team as husband and wife
- We support each other - we share our trials & joys
- We have a common goal: to live a life
- Accept the situation: it is what it is; changes / sacrifices have to me made, but it’s not a total loss
- Make the most of what you have or can do each day
- Humor saves the day every day; laugh at something, it’s ok!
- Skip the pity party - it makes you feel like a victim, defeated. This is not how you want to feel!
- Talk to each other about the illness, life changes, emotions, thoughts, challenges, triumphs, anything & everything. Vent. Cry. Laugh. Just talk it out!
- Educate yourselves on the illness, condition, medications, treatments, as much as you can so you can ask questions /discuss issues with doctors
- Learn about what to expect with that illness or condition
- Discuss with spouse what is needed to be comfortable: pillows, chair, bed, covers, lighting, room temperature, sounds ...
- Discuss with spouse what is needed to remain as independent as safely possible; do it
- Include diversions for caree & for caregiver daily
- Caregivers: sometimes you have to grin and bear it when caree is having a bad day and is grumpy, uncomfortable, negative… Let caree talk - sometimes illness makes people say negative things, but it’s not necessarily caree’s view. S/he just wants to vent, so offer understanding. Say "I love you!"
- Some days, caree & caregivers just need time apart. Take it!
- Give caree treats, items s/he likes a lot - with doctor’s approval!
As people, we have choices on many things, but not on all. We can control some things, but not all. Choosing to do the most with what you have and accepting things you cannot control, you release the stress, frustration and grief over what you cannot have. Such is life! Dwell instead on your blessings and be grateful. As a caregiver, you make a big difference in your loved one’s life. Make your caregiving experience a meaningful one for both of you!
Lynn Greenblatt is a caregiver for her husband and long-distance caregiver for her mother. She took on the role as her husband developed CRPS and her mother struggled with grief upon the loss of her husband of 50 years. Lynn created CaregivingCafe.com to share the links and lessons she acquired as she searched for answers and for support. She hopes to help caregivers better manage their caregiving journey by providing information, resources, support and solutions to the many caregiving issues that inevitably arise - all in one website.