Ten and a half years ago Dad suffered a massive stroke during surgery which left him totally dependent on others for his survival. A long hospitalization followed by three weeks at a rehabilitation facility did not improve his condition, and all too soon it was time for our family to decide on Dad's future. We agonized between committing him to a nursing facility or caring for him at home. Late one night I confided in an incredibly compassionate nurse and asked her what she would do if he were her dad. Without a moment's hesitation she said, "I would take him home and love and care for him for as long as the good Lord sees fit to let us have him. It won't be easy, but you'll never regret it."

We made the decision as a family to take Dad home, and began a crash course on how to do tube feedings, give bed baths, range of motion exercises, and how to manage bed to wheelchair to car transfers.

Dad, Mom, and I moved in with my sister's family because we knew that in spite of the crowded conditions, we needed the kokua that each family member would contribute. Mom, 81 years old and healthy, took care of Dad during the day while the rest of us were away at our fulltime jobs. I took over after my work day ended, including the night shift. My sister Carolene ran the household and supplied respite. Her older son Jason, at eleven years of age, quickly learned to do diaper changes and helped with the heavy lifting and turning of his Papa. David, Jason's younger brother, at nine years of age, had the chore of emptying Papa's trash and caring for the family pets. Dad's sister Mitsuko came daily to keep Mom company and to help care for her brother.

Even with the entire family pitching in, we still required outside help. A home health aide came until we no longer qualified for this service. We were then able to get help from a bathing service until we no longer qualified, and since then, Dad has been under our care. Thankfully, we have a geriatrician who makes home visits. Hospitalizations have been few and far between, and the occasional trips to have his G-tube changed have been accomplished via HandiVan and HandiCab.

Two years after Dad's stroke, Mom required aortic valve replacement surgery. While Mom was convalescing, we decided to move to my home which would allow all of us much needed space. Fortunately, we have a wonderful, talented neighbor who is a general contractor, and through his efforts, we were able to have the bathroom made handicapped accessible for Mom and to convert the patio into a glass-enclosed room for Dad.

Mom soon required almost as much care as Dad, but she refused to hire outside help. Jason moved in with us during his senior year in high school and was my dependable assistant during Mom's final year while Carolene and David continued to offer respite. Mom passed away in August, 1998, and in September, Carolene and David moved in with us. I was still teaching, Carolene was a school administrator, and both boys were now full-time college students. We very quickly realized that we were not going to survive without outside help, and though the recommendation of a fantastic friend who was a professional caregiver, we were led to an excellent licensed agency which has since supplied care for Papa three days a week. Auntie, at age 86, still comes twice a week to help us.

Our decision to care for Dad, and later Mom, at home, has not been without problems. My biggest personal conflict came with the inevitable role reversals. I resolved this issue by recognizing that since they had changed my diapers when I was an infant, this was just my opportunity to repay the favor.

Social isolation was a problem, admittedly of my own making. It became easier to just stay at home instead of having to answer Mom's questions: "Where are you going? When will you be home? Do you really have to go?" It is no wonder that invitations eventually ceased after I made one excuse, then another for not being able to join friends for occasional outings.

But caring for Dad and Mom has had its hilarious moments, too. Soon after bringing Dad home, we decided that a shower would feel so much better than a bed bath, so we embarked on this adventure with the precision of a military maneuver. We set up Jason and David's plastic wading pool in the kitchen, hooked up a hose to the kitchen faucet, then winched Dad up in his hydraulic lift. We managed to swing him over the wading pool, then turned on the water. Dad didn't take too kindly to this makeshift shower and started to wiggle. Holding on to him was akin to hugging a wet seal. We beat a hasty retreat with the troops slipping and sliding along a trail of soapy water all over the kitchen floor and the family room carpet, all the way back to the security of his bed. We voted never to attempt wet baths ever again.

Another lesson learned the hard way: eggcrate mattresses are not meant to be washed. I had earlier come to an erroneous conclusion that Dad's eggcrate could stand to be washed and had tied it at a couple of places to the chain link fence, squirted the mattress quite liberally with liquid soap, then blasted the pressure hose at maximum flow. Imagine my horror as I watched the eggcrate sag further and further towards the ground. But this was not the end. Three days later, the mattress still hadn't dried completely, and our family made the joint decision to trash it rather than risk exposing Dad to the mod that we were certain was starting to grow in the eggcrate.

Caregiving for our parents' grandparents has required considerable sacrifice for our family, but it has been more than offset by the many benefits that we have reaped. All of us have learned to be more patient, considerate, and humble. But we are also realistic, and the words exhausting, thankless, unrelenting, sleep-deprived, and life-changing also come to mind. It has been so very touching to watch Jason and David interact with their grandparents. They have developed into responsible young adults capable of caring totally for their grandfather.

When we first started this journey called Caregiving, we searched unsuccessfully for a support group that would meet our specific needs. During this time of search, Mom and I enrolled in a state-sponsored class for caregivers where we met others who were in similar situations as ours. Our last class session was the Saturday following Hurricane Iniki where we decided to start a support group of our own without the guidance of professionals. We must be doing something right as we have been meeting on the last Saturday of each month (except December) for almost ten years. Five of the original group are still involved, three of them as valuable resource people, as their care recipients have passed on.

We occasionally invite guest speakers to address our group, but usually our meetings involve sharing personal experiences, crying together, and encouraging each other with the reminders that we are not alone in this experience, and that some other caregiver is in a situation that is worse than the one that we are encountering. We also support each other during the inevitable periods of grief. We tell each other which vendors to avoid, share information that we have learned from attending seminars and workshops, and help each other problem solve by sharing what has worked for us under similar circumstances. We tell each other where to buy diapers, which agencies to contact for specific help, and share a pot luck meal during each of our gatherings.

We always welcome other past, present, and future caregivers to join us at our monthly meetings. As stressed out caregivers, we may not know the answers to specific concerns, but by putting our heads and hearts together, someone in the support group will know where help, information, or possible solutions might be available.

If you would like more information about our meetings, please page Karen at 299-1444.