Caregiving Reflections

Written by, Dianne Breitling

Mother’s Day has become a time of reflection for me as I remember the final years my mother and I spent together. The hours we shared as well as those spent doing things for her are precious to me now, filling my heart with gratitude for circumstances which allowed me this privilege.

My mother had spinal disc problems which resulted in several surgeries and constant pain. She also had to have both hips replaced. Because of her physical limitations, my father became her caregiver doing all of the cooking and housekeeping for about fifteen years. Late in life my mother developed severe arthritis, which greatly limited the use of her amazingly creative hands. Through it all, my mother could always be seen with the most wonderful smile on her face. She loved people more than anyone I have ever known. For the final eighteen months she was in her scooter most of the time because the pain had become more than she could bear when walking.

At age 85, my father had a minor car accident, making him feel unsafe on the road. His wise decision to stop driving was the start of my journey as a caregiver for both of them. Since I lived close by, I gladly took on the responsibility to drive them wherever they needed to go such as doctor and dentist appointments, getting haircuts, and shopping as well as picking up prescriptions or any other household or personal items they needed. This was a difficult transition for my father since he had been the caregiver for my mother for so many years.  He went from doing everything for the two of them to depending on others in a relatively short time and each loss was painful for me to watch.

Both of my parents became so comfortable with me doing things for them that even when my siblings offered to help by taking them to their doctor’s appointments, they wanted me to do it because I was familiar with their needs and knew the doctors they were seeing. They also preferred me to do the shopping over my siblings because I knew their likes and dislikes.

Dad became very ill and had an emergency colostomy, changing our world drastically. I spent countless hours with him in the hospital trying to get answers from the medical team and worrying that we might lose him, while still caring for my mother’s needs. When he returned home it became clear I could not carry on with everything I had been trying to manage while adding the new burden of changing his colostomy bag regularly. My brother would sometimes do this, but he had irregular work hours and lived further away so it was difficult for him to be there at the needed times. The responsibilities had fallen on me because of how close I lived to them and because I was the only child who did not have a full-time job.

After three years and growing needs, I requested each of my siblings to take one day to check on them. They were asked to make sure our parents had everything they needed and to help with dinner if necessary. When our father was in the rehab center, the scheduled person for the day was responsible to lay out breakfast, medications and check on mother by phone in the morning. This gave me two assigned days instead of the five to seven days I had been used to, but even that became difficult because if someone couldn’t meet their obligation my mother would call me and ask me to come over. Calls early in the morning or late at night were a regular occurrence. Often I would hear from my parents and my siblings that I was a life-saver or they wished I didn’t need to do so much, but after years of struggling with so many responsibilities, those words were not enough. I can see now it would have been so much better if I had been able to convince my parents to let me hire some outside help, but when I was in the middle of the experience, it was hard to know what to do. Looking back usually changes the perspective and solutions become clear.

In 2010 my father was hospitalized with a severe infection (MRSA) and while in rehab, he agreed to move into an assisted living center. My brother, sister and I made the arrangements, but at the last-minute he changed his mind. He didn’t want to give up the little bit of independence he still had, making those last days in his home emotionally difficult for both of us. I wanted to help make it possible for him to live at home, but told him when he could not prepare their meals that would no longer be possible. Both parents refused the idea of having Meals on Wheels delivered or having someone come in to cook and clean a few times a week. At this time the emotional strain was increasing because they knew I was making it possible for them to live in their home. This created feelings of gratitude, but also resentment towards me because I had too much say about what happened to them.

After a second bout with the MRSA infection, my father realized his strength wasn’t returning and once again asked me to make arrangements for them to move into an assisted living center. My father only lived there for five months before he passed away. My mother was lonely and continued to need attention after his passing. My siblings and I continued our daily schedule of checking in on her for the additional thirteen months of her life at the assisted living center.

Through all of the years of caregiving, my husband was always supportive. Not only did he spend time doing many things for them, he never complained when he came home to an empty house and no dinner or when our lives were put on hold while I met the needs of my parents.

As I reflect on the time spent caring for my aging parents, I realize the major challenge was recognizing the weight which came from the cumulative effect of the responsibilities taken on. The coordinating of two households with the added worry and care of their declining health was extremely difficult.

While I missed spending time with my children and grandchildren during this time, I am grateful I was given the strength to care for my parents during their final years. When I look back on this experience, it is clear that the blessings far outweigh the sacrifices. My feelings are joy and comfort because I have no regrets. I’m happy they are in a better place without health complications and pain; but      I love and miss them both.

Thank you Dianne for your caregiving example and for sharing your experience on Uniting Caregivers. What a wonderful daughter and big difference you made in their lives.