One of my most poignant memories was watching a woman, in her 50’s, playing a version of catch with her father who had advanced Alzheimer’s disease. He was in a wheelchair, could not speak anymore and had to be shown how to pick up the ball, hold it and toss it back to his daughter each time.
The scene was heartbreaking and beautiful at the same time. Heartbreaking to see the cruelty of Alzheimer’s disease, and being a “Daddy’s girl” it really tugged at my heartstrings. Beautiful to see the daughter, in spite of what the disease has taken, had not let it define her relationship with her Father nor their quality of life. Although life had changed drastically for both of them the daughter adapted and was able to still connect, love and provide a good life for her Father.
I work with families every day that are care-giving and I see many different situations, but there is one thing that is similar to each family, and that is the want to provide a high quality of life for their loved one.
“Quality of life” means something different to each of us, but living well till the end of our days is important to us all. This is where the true meaning of care-giving comes in. Whether you are changing diapers for a newborn, helping someone recovering from surgery, or providing personal care for an adult, the tasks of basic care-giving can become overwhelming and daunting. With the added care-giving responsibilities relationships, connections, well-being and what matters most to us and others can quickly go by the wayside.
Think about the most important things in your day or week. Mine include loving on my family, my morning coffee, exercise, reading, and staying connected to friends. While we may have one or two things in common I know we all have different answers. I also bet your answers did not include managing your medications, getting from your bed to your chair, or basic grooming.
When you are care-giving for a loved one, especially for long time, quality of life can suffer. I frequently tell the families I work with that there is a difference between providing task care and quality care. Yes, the task of making sure medications are being administered correctly and making your home safe are important, but it is also just as important to take the time to look through the photo album, go for an evening stroll, or taking them to a baseball game.
It can be exhausting and take a lot of sacrifice to provide care and quality of life for another person, there is no doubt about that. I believe that when we look back on our time with our loved ones we will remember the quality of life not the tasks of life. The daughter playing catch with her Dad will look back and be glad that she made the effort to connect and engage with her Father and will remember the smile he had on his face not the task of getting him into his wheelchair every day. What do you want to remember when you think back on your time with your loved one?