Ruth from Rhode Island

Caregiving for my mother, father, mother-in-law and father-in-law took place during the last years of their lives. All are now passed away. Each caregiving experience was individual and what was required for care and who was needed to help or could be counted on to help varied.

One story that I will tell is about my father. My father's name is John J. McGinn. He was a World War II Army/Air Force Captain who met my mother during the war, married her and they had nine children. My father became an electric motor repairman with a business fixing motors in the basement of our home. When my father was about 80, he had a knee replacement and while in the hospital was told about a lung condition, first diagnosed as pneumonia but later something much worse, a type of lung disease that made his lungs like mesh and breathing very difficult.

Caregiving began after my dad left rehabilitation for his knee replacement. In order to get Dad released from rehabilitation, one of my sisters said that she would be at his home to take care of him and then the rest of us children and our spouses said that we would help. My mom was also my dad's caregiver, but she had liver cancer and needed help. As Dad's breathing worsened, he asked me and another sister to look into a lung transplant, which we did. We were able to get an appointment at Pittsburgh Hospital and my brother-in-law, another sister and I made the difficult road trip to the hospital. The lung transplant was not to be but we had explored it as a possibility and Dad was satisfied that he had looked at all options.

Back at home, caregiving continued. Dad needed assistance with basic daily functions such as dressing, eating, walking, getting to the bathroom as well as medicine maintenance. Eventually, hospice workers were added to our helpers. Fluid retention was an issue and Dad had a catheter which required care. Additional help was enlisted to perform this and other tasks. My sisters and brother devised a schedule of cooking meals and sleeping overnight so that we could be there to help. We received instruction from hospice nurses about end of life. One of our fears was if we should lose electricity since Dad needed his oxygen machine to breathe. Dad continued in good spirits until his last breath. He passed away in the living room of our home with most of the family there. We love him and miss him dearly.

As far as tips for other caregivers: I can only give my view based on my circumstances, which may be totally different from theirs but I think appreciating the person that you are caring for is #1. Respect the wishes of your patient and try to get others to help. Be happy that you did your best.