By Sylvana Rinehart, Certified Concierge Care Advisor
About forty years ago my father had a stroke which left him semi paralyzed, wheelchair bound, and unable to read and concentrate. Overnight our lives changed. Being the youngest of four and the only one living in the same country as my parents, I automatically fell into the role of caregiver even though I was in my mid-twenties. My parents had built a nice retirement home in Portugal in the countryside, 30 miles away from a major city, hospital and medical care. Because my mother and I were consumed with dad’s mobility issues, we didn’t understand that his needs were compounded by the onset of dementia as a result of the stroke.
There we were, two 5’ and a few inches women taking care of a 5’10” 190-pound man, who refused to understand what was happening to him. He was grouchy, unappreciative, demanding and generally miserable. We were tired, I was running back and forth to work an hour and a half away from their home and not sleeping at night. The first time we tried to get him into the car and then out of the car we realized that the front car door didn’t open wide enough to allow us to ease him onto the seat. We didn’t know about gait belts, but we did quickly find out that if we held onto his pants, we had more leverage. My mother, having had years of experience with high fashion clothing and tight skirts and high heels, suggested we have him enter the car with his backside first and then swing his legs into the car. We tried it without dropping him despite his moans and groans, and low and behold, it worked! We were pleased with ourselves.
As we settled into a routine, and luckily a neighbor volunteered to come help him with his reading. That friendly and good-humored man thought it would be a good idea to read a book of one of my father’s favorite authors. He took a piece of paper in which he cut out a long and narrow window only letting through one line, thus forcing dad to read one line at a time. He came daily for half an hour, either reading to him or making him read out loud. This exercise was excruciatingly hard for him, but they both persevered until he could read a paragraph without being guided by the paper.
My parents had built the house for their retirement years. Little did they realize that it was not suited for someone in a wheelchair. Showers were not possible because our house only had bathtubs. We didn’t know about shower chairs or a sliding transfer bench with rails. Looking back, we didn’t have grab bars either. A bar could have helped him hold himself up better, allowing us to care for him more safely. The toilet seat was low with no side rails. These are all things that are essential and that now a days we take for granted. I don’t recall my father having had a shower after his stroke, which was something he loved to do daily – always finishing with cold water because it invigorated him. I can still hear him splashing and crying out about the cold water imagining him like a bird thrashing in a bird bath.
One day, wanting to be kind to my father, I nearly killed him. Their house was built on a steep hill. The yard was his pride and joy after he retired. The wider alleyway to go down to the yard was paved with large pavers interspersed with grass. On each side, he had planted climbing roses and vines growing on granite pillars. I loved going down that way and I knew he wanted to meander in his garden again, so I offered to take him walking down the hill on the uneven pavement, with the wheelchair and him facing forward. He quickly let me know that I was going to kill him. I was having a hard time holding on to him and the wheelchair because of his weight and the hillside. As it turned out the uneven pavement helped slow down the wheelchair. I don’t remember getting down to the bottom of his garden, but it was the scariest experience I ever had while taking care of my father. Later a nurse told me I should have gone down backwards. He would have felt much safer and I would have felt much calmer!
The doctor, whom my parents knew socially, told him he would never regain the use of his left arm and leg again and that he would not walk again. Little did he know my father! He was determined to walk and worked really hard at it. We cheered him on every step of the way, and when he finally was able to take about 20 steps with a cane, we felt that he had proved the doctor wrong. Slowly his mood started to change. Some days, he was good, the next he was confused. I would come home to see him every two days and the first thing he said was, “I haven’t seen you in a week! Where have you been?” He had severe gout issues, so my mother didn’t feed him meat. If one of us was having meat, he threw a tantrum and banged his fist on the table accompanied by a swear word in his native tongue (Dutch), demanding to have meat. I had never seen him act like that before. He had always been a mild, polite, composed diplomat. Starting mid-afternoon, he would get more confused, fidgety, and sometimes irritable. I would have my dog, Mate, sit with him to settle him down. I certainly didn’t realize it at the time, but my father was exhibiting signs of dementia.
We didn’t talk about cognitive impairment then because we thought it was a normal part of aging. We would correct our loved ones, sometimes even scold them instead of acknowledging and do our best to redirect them when they were obsessing on a particular subject. I have learned so much since those days and despite my two decades of working with seniors with cognitive impairment, I am constantly learning and adjusting. I do confess I love being around these folks because they have so much to teach us about life and living “in the moment.”