This post was written by Deborah Roth Grabein, mother of daily AutumnGrove Cottage blogger Abigail Grabein, who has experienced first hand what it is like to juggle the task of being both a caregiver and daughter with her parents.
Before his health took a significant turn downward, my Dad was the most intentional and diligent person about the details of life. He had remarkable recall with dates, times, facts and figures. His memory was strong and he took pride in the fact that he was so organized. After all, he was a work systems analyst and an accountant. His profession required him to be efficient and he was quite successful.
For the most part, his health remained good until he was about 75. Diabetes, heart issues and COPD began to take a toll on him and we noticed that his memory was not as sharp as it once was. He knew it as well and it frustrated him. After all, this was a man who read multiple daily newspapers as well as many books. He was the only person I knew who also read every annual report related to his investments. He would highlight sections of the reports and dog-ear the pages that he wanted to review with his accountant, his son or me. These were things that were important to him and when his reading slowed, so did his mind. We were keenly aware that something was shifting and his ability to read, recall and discuss were on the decline.
For someone as dogged as my Dad, the inability to remember things became a significant source of frustration. He would get ready to go to the doctor then look at my Mom and say, “Where are we going?” Her frustrated responses elevated his frustration so much so that his new response became “Nobody told me that!” We realized that this was his way to mask the reality of his declining recall and became his way to safely respond to that which was unfamiliar to him.
This, of course, became an exercise in frustration for us. Each of us knew that we had communicated information appropriately to him about trips, appointments, updates on grandchildren and other family members but his ability on a daily basis to remember, was diminishing.
The key thing we tried to remember was that he was a man of routine. Even in his best days, he lived by a daily routine that was not to be interrupted without good cause. We also knew that he needed a routine to sustain him in these later years. He could hold onto that and it helped to give him a sense of purpose.
As a family, we needed to develop a communication routine that helped to lessen his frustration and to give my Mom a way to help him. She was his primary caregiver in his last years and they lived at home, which was their desire and ours as well as long as it made sense.
So what did we do?
1. We provided an environment that was comfortable and familiar. He had “his chair” and by that chair, we provided a clock that gave him dates, times, weather updates and more. The digits and letters on the clock were large enough for him to read and the clock had a light that made it easy for him as well. We provided family photos so that he could remember each of us. He had books, music on CD, a pad and pencil so that he could write questions or concerns, his schedule for the day, and anything that he wanted to discuss with family or friends.
2. We provided weekly schedules so that he knew where each of his kids and grandchildren were. If he had an appointment on any given day, we noted it on his pad so that he could always refer to it.
3. We provided local newspapers to help organize his thinking. Whenever we traveled, we always got the local paper for him. This provided him the name of the city, weather, and local news. It also gave him something to do during the day.
4. His personal mail was kept in a box by his chair with markers, pens and post-it notes so that when he was able, he could read his annual reports, make notes, or at least note pages that needed discussion with someone.
5. We also gave him paper calendars. Some days these seemed to help him as he could see holidays and other special days. Birthdays, appointments, and other outings could be noted and on good days, he would be alert and ready for the opportunities for the week.
6. We sent postcards to him. Many of his grandchildren and children traveled and a short note with a beautiful photo were easy to read and provided a connection to his family.
7. We constantly communicated. We repeated information in writing and verbally. During the last six months of his life, he had no ability to read or write and his hearing was almost gone. We constantly repeated things until he gave us evidence that either he knew what we were saying, or he didn’t but was ok with it.
While none of this was perfect and needed to be adjusted as his health declined, it was a way to allow him dignity in his final years and to give him a way to communicate with us and us with him. Most importantly, it was a way to continue loving my Dad.