Finding the Joy as a Family Caregiver
In Chapter 11 of Take Your Oxygen First, Caregiving as Spiritual Practice, Leeza opens the chapter saying “You have sole custody of your life, so step up and own it. This usually means you must reinvent yourself constantly. You have to stretch and bend, or you will break.” During her mother’s illness Leeza and her family faced many circumstances that forced each of them to stretch and bend whether they were ready for it or not. Such is the nature of family caregiving. Co-author and psychologist, Jamie Huysman, PsyD., describes the challenge that family caregivers face to “learn acceptance, to live in the present moment and let go of things you cannot control. A challenge to be sure, but if there can be any joy in caregiving, this is where it is. “To learn acceptance, to live in the moment and let go of things you cannot control,” she writes.
To Learn Acceptance: Often, it is the Long Goodbye of Alzheimer’s disease that tests even the most dedicated of caregivers. Accepting the fact that this slowly progressive and unstoppable (for now) illness will claim our loved one’s ability, personality, and life is among the most difficult demands on family caregivers. No one wants to stop hoping for relief and hoping their loved one won’t decline. But it is in understanding that it will progress and change your loved one that you are then open and ready to learn ways to help ensure at each phase your loved one has the support and care they need.
To Live in the Moment: A caregiver once asked me how he should handle the conversation when his mother calls and scolds him for not visiting on the very evening after he’d spent a glorious day with her. Another family excitedly sings and blows out candles on a birthday cake. Their father smiles, sings and thoroughly enjoys the event. Before they depart, however, he asks whose birthday it is.
An illness that begins in the memory center of our brain is heartless, and takes these precious moments of knowledge from our loved ones. What Alzheimer’s does NOT take are the moments themselves that can truly be enjoyed. If your loved one appears happy and content, it’s because they are! Perhaps their understanding of what is making them happy is not what you understand it to be, but take comfort that those happy moments are real moments for your loved one. Live for those moments. The fact that your loved one cannot remember them does not take away from the moment. Memories may fade, but love remains.
Let Go of Things You Cannot Control: Among family caregivers the desire to “fix things” and “solve problems” is strong. Why wouldn’t it be? Your loved one deserves nothing less. Up against an incurable illness like Alzheimer’s, however, the reality is that ultimately you cannot fix everything or solve the ultimate problem. The disease has control, and its timeline of progression will dictate your Loved One’s course. Given these odds it's vital to understand your role and the problems you can address.
Dr. Huysman describes a Buddhist practice of calling those who care for others “warriors of compassion.” They are not fighting against the illness but fighting for the loved one’s comfort — and that may very well be in your control. Perhaps you know the music that brings your loved one happiness, the pictures that still speak to their fading long-term memory, the way they like their back rubbed or nails painted.
