Asking for help is naturally such a very hard thing for us all to do… yet getting the right help is essential as a family caregiver to our well-being as well as for the care of the loved ones we are tending.
In my personal experience I was faced with challenge of being the primary caregiver for my wife Stefania as she battled terminal cancer. I was also tasked with raising my two girls who were 2 and 10 at the time. I was on-call 24 hours a day, every single day. Stefania was only 41 years old when she was diagnosed with a rare cancer called adenocarcinoma of the parotid also known as salivary duct carcinoma. Her cancer attacked her head and neck. The horrific devastation caused by the spread of tumors left her head and neck grossly disfigured. In the end she was left blind by her lymph system being constricted in her neck causing her eyes to swell shut. However, Stefania was naturally physically very strong from many active years of volleyball and yoga. She was able to walk on her own until her last day.
My call for help came very clearly one morning. Stefania was upstairs on the potty in our master bedroom bathroom. She was extremely weak and nearly totally blind. However, Stefania desperately wanted to remain independent. She needed assistance but didn’t want it at all.
Our youngest daughter Daniella (who since has been diagnosed with moderate autism) was downstairs by herself. I used to joke that Daniella’s favorite past time would be to play with knives and stick metal items in electrical outlets. To this day at almost 6 year of age Daniella really can’t be left unattended.
So, there I was begging Stefania to stay put on the potty so I could go downstairs and tend to Daniella. I remember that moment as clearly today as when it happened. I thought this is crazy….I can’t do this all myself….I NEED HELP. I was at a breaking point.
I called Stefania’s mother Silvana immediately. I told her that I needed her to move in with us. She came to our house that day and stayed with us until Stefania died about a month later. Silvana was a godsend. She provided assistance in absolutely everyway she could. Silvana helped with Stefania’s eating, bathing, dressing, and medical appointments…. I was freed up to have “quality time” with my wife Stefania. What a gift that was to us. My children benefited enormously as well from the extra set of hands in the house.
Stefania died at age 43. Her final day was full of energy and strength, exactly what one would expect from her. She gave the gift of heartfelt last conversations and good-byes to 60+ family and friends one on one at our home. When she was done she took a bath and went back to bed to slip into a deep sleep.
Family caregivers are faced with such a variety of ongoing emotional and physical challenges. No one person should carry all those challenges alone. Ask for help! It will improve the care for your loved one and it will make you a far better caregiver too.
Duke Chadsey made a life and career shift from impact he experienced as a caregiver. Duke is a co-chair for the Patient Family Advisory Council (PFAC) at Saddleback Memorial Medical Center with a passion for improving the patient and family experience. Duke is also now President of SYNERGY HomeCare Coastal Cities a service that provides compassionate non-medical in-home care to people of all ages. SYNERGY HomeCare Coastal Cities services South Orange County, CA including the cities of Newport Beach, Irvine, Laguna Hills, Dana Point, and San Clemente.