When my journey began as a primary caregiver for my aunt and parent, it quickly became apparent that with the best intentions as a caregiver, I was maneuvering in an area which was unfamiliar to me and the stakes were high, I couldn't afford to make mistakes or my seniors could pay the price. Reaching out to anyone and everyone for information, opinions and support was essential for success. Always finding the right resource with the right experience and information at the right time didn’t always happen in my required timeframe.
My role as a caregiver began 17 years ago, when an unknown heart condition caused my mother to pass out and fracture her neck. At the time she was 75 years old and was in a halo for 12 weeks and needed a lot of care. Being the only child that stayed in my home town, I became the primary caregiver. Fast forward to 8 years ago and I became the power of attorney for my never married aunt right before her 90th birthday. The ink on the paperwork was barely dry when she fell and was hospitalized for a short time, went into rehab and then an assisted living facility for three years. As POA I managed all aspects of her life, housing, medical, finances including the sale of her house and most of her belongings and finally her funeral.
Over the years, my dad had a few heart and vascular surgeries and would come to recover at our house, luckily my employer was flexible and let me work virtually so I could care for my parents during these recovery periods and I have a wonderful supportive “roll up your sleeves and help” husband. Due to the original heart condition my mother developed vascular dementia and while they were still at home my dad did most of the primary caregiving. But as time went on and her dementia progressed and he wore out, I took over a lot of the caregiving; setting up weekly medication boxes, managing doctor appointments, laundry, bathing, meal preparation, lawn and home maintenance, etc. However five years ago, my dad was unknowingly given a medication he was allergic to and it caused strength and muscle issues and as a result he went to rehab for sixteen weeks and my mother lived with us, until it became apparent my dad couldn’t recover to his former self and they eventually moved to assisted living.
The next 4.5 years the biggest thing I managed was the care they received from their Assisted Living; holding them accountable to deliver the service they had promised us prior to committing to my parents living in their facility. Additionally I continued to manage doctor and specialists appointments, hospital stays, shopping and social outings. The hardest thing I ever had to do was decide when it was time to bring in hospice for the two of them.
The biggest issue I had and I believe many others have is not knowing what they don't know and what resources are available to them and the stress that creates for a caregiver. The resources need to be usable tools that guide step by step not paragraph after paragraph of information that needs to be read and distilled into a personal action plan. There isn't time for that, caregivers are stressed enough as it is and time is very precious to them.
Kathy Smith, as a result of her caregiving experience, felt a real need for caregiver tools. She developed several for caregivers which can be found on her website www.seniorsresourcehub.com as well as at amazon.com.