Keep an open heart. Wisdom of the heart brings intuition and love into all phases of my caregiving relationship. Because I am connected to the circle of life, I am assured that I will both give and receive as I move through my journey. I am at peace.
Connect with the generations. I cultivate relationships with my daughters, sister and grandchildren. I make regular telephone contact with Peter’s family members to keep them abreast of Peter’s condition. I realize that kinship goes beyond our immediate family to extend to all who care to participate. Our family stories, traditions and activities fill our days and provide a wealth of meaning for us. Even friends and neighbors are brought into the fold—some to help Peter, others to help sustain me during difficult times. I remain hopeful.
Expand my coping abilities. When a family or partnership crisis happens, I used to allow things to fall apart and give up. But I have learned more effective and life-renewing strategies. I have learned to accept what cannot be changed and let go of what should be or what can never be. I know that I must continue to develop new routines that fit the changing conditions of Peter’s disease. I continue to love, appreciate and accept Peter regardless of what physical and mental ailments he has.
I am also learning to be a more effective manager in setting up our daily routine. I am hiring outside help for daytime. I am taking more breaks over the course of the day. I am closing down the house early in the evening so I can spend time with uninterrupted reading. And I am letting so much go—windows, woodwork, clean floors, even supper dishes if I’m tired. I have serenity.
Be willing to experience role reversal. Once Peter was diagnosed I vowed never to take over his role as head of household. I even organized the day so he would feel in charge. After a while this approach made no sense. Peter simply couldn’t handle the bills, schedule medical and other appointments, garden, and more recently, the errands. Sanity and well-being won the day. Peter seems relieved he is no longer thrust into activities that confuse him or which make him feel like a failure. I am at ease.
Reinvigorate family relationships. I never realized how Peter’s medical crisis could bring family members together to achieve a common goal: giving comfort and aid to Peter and myself. I know everyone can’t be on the same page all the time. Sometimes, my daughters weary of hearing about their dad’s newest setback. Johnny can’t be expected to fit into the family healing circle like his sisters. But what a joy when he does call and inquires about his dad or shows his love with an occasional greeting card. My sister has been my greatest comfort, always open for listening to my sad stories, which she’s heard far too many times. I am deeply grateful.
Strengthen bonds with the community. Now that I’ve learned to be an advocate for Peter, I can reach out in new ways for friends and allies. My Alzheimer’s support group sustains me through the difficult days. I’m well over the early point in caregiving, where I was exhausted and joyless. Now I repeat the word HALT frequently throughout the day, reminding me to avoid hunger, anger, loneliness and turmoil. I manage my eating habits better. I also know I can pick up the phone or connect with email to a wide variety of old and new friends.
I especially find advocating a satisfying experience. I can let Peter speak when he has the ability, and speak up when he cannot. This gives me a sense of purpose and accomplishment, and shows Peter how deeply I care. Once I explained to Dr. Jones that he should speak directly to the patient—instead of to me—Peter was less agitated with the medical exam. I keep notes of everything the doctor says, but Peter feels he, too, has a relationship with Dr. Jones. I am happy.
Give back to others. Being open-hearted with Peter reminds me of how I was in my early parenting days. I love being a hero who can put the needs of another before myself. I’ve even discovered from everyday experience that bringing help and solace to Peter or to one of my support group friends is a “feel-good” experience. It has its own reward: In giving, I receive. I am comforted.
Express my spiritual values. I have admitted to my support group (at last) that the challenges of providing long-term care for Peter are enormous, and watching him deteriorate tears me apart. The road has seemed too long—it feels like a lifetime. I have had to reach inside for my very survival. I have found, though, that by being in charge of the day’s structure and closely monitoring Peter’s health, abilities, level of functioning and medications, caregiving has turned out to be a transforming experience. I continue to act on my core beliefs that the family comes first and I am providing a legacy for my children. I also have faith in the future. I plan to outlive him so I can care for him to the end. I love the last drama of our life together. I never knew it would be quite so all consuming. All is well.
Persevere with self-care. Taking care of my physical, mental and emotional health is a top priority if I am to be a successful caregiver. No matter how much I throw myself into the daily routine I set up for Peter’s well-being, I still must maintain a sense of myself, and to be aware of my own needs. I have no intention of losing myself to the point of health problems. I’ve seen this happen so frequently among our Alzheimer group members. Of course, I must accept my own limitations, always ask for help when needed and remind myself every day that no one person can do it all. I have trust.
(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)
*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.