We live in an increasingly fast-paced world. Instant access. “Do you want to meet for dinner tonight,” I text to our son. Within seconds he responds and our plans are set. No more using the phone hanging on the kitchen wall like I did in the 70’s, listening to the ring on the other line and waiting for someone to pick up. No more calling back at intervals until I got a response.
If I want to be entertained in the evening, I can sit down at 6:05, or 7:23, or 8:09, and have instant access to a wide variety of movies, 24-hour news, or my favorite television shows that I recorded. No more watching the clock and waiting until 7:00 on the dot, when my favorite show was aired on one of the three channels I received on my television through its antenna when I was young.
If I’m hungry, I can call out for a pizza and get it delivered within a half an hour. Amazon is working on a drone delivery system from which we may be able to order and receive an item in a matter of hours, or perhaps even minutes.
We’ve reduced waiting dramatically in our 21st century lives, and we become rather annoyed when waiting is required.
New developments are continually being made in our technologies. We buy the latest and greatest cell phones, televisions to stream videos, cars with GPS. We are on a non-ending, ever-accelerating learning curve of selecting and using our devices.
We are living by leaps and bounds. That is, until we are caring for a family member with Alzheimer’s. Then our fast-paced life grinds down to a crawl.
Even from the early stages of Alzheimer’s, being with Dad, helping him, trying to accomplish something with him took not only longer, it took more patience. While he could still walk on his own, I used to take Dad to the grocery store. The act of just getting out of the car required a lot of time. Dad was moving slowly, and he wasn’t always paying attention to the agenda. It reminded me of when I tried to run errands with young children in car seats: getting them in and out of the car, navigating a store with them, prodding and corralling them each step of the way.
While Dad was still fairly mobile, Mom wanted to get a stationary bike for him to use at home. She thought it might help keep his muscles strong and aid in maintaining his mobility. I took them to the sporting goods store where they had scooters for customers to use. As Mom and I talked to the salesperson and tried to make a purchase decision, Dad was all over that store on his scooter. I abandoned Mom with her decision and chased after Dad to prevent him from knocking over end-of-aisle displays, getting lost, or causing some other disaster.
The time it took to accomplish everyday necessary actions ballooned. At first, while Dad was still able to take a shower alone, he would disappear into the bathroom and be gone for well over an hour. I have no idea what he was doing in there. Meals dragged on for over an hour, not just occasionally, but as a matter of course, as we sat watching Dad push food around on his plate, encouraging him to take a bite of food long after we’d finished our own.
With Dad, we weren’t living by leaps and bounds anymore. We were living inch-by-inch. Then later, as Dad became less and less able to function, we were living dot-by-dot until it seemed as if time might stop altogether.
It takes a lot of patience on the part of the caregiver, and quite possibly on the part of the loved one with Alzheimer’s as well, to live inch-by-inch.
I showed up about once a week to help out with Dad. Mom balked if I tried to come more frequently. “You have your own family and your own life to live,” she said. So I came once a week with an extra day thrown in here or there for doctors’ appointments or other special needs. It was easy for me to have patience helping Dad. I was a short-timer. I was there solely to help with Dad. If it took us an entire afternoon to run one errand, so be it. Later, when Dad could no longer feed himself, if it took over an hour to feed him his meal, that was okay.
I wasn’t there morning, noon, and night, day after day, week after week, for all the getting up in the mornings and going to bed at nights, the trips to the bathroom, the breakfasts, lunches, and dinners. My mom was. And it took a lot of patience. Maybe more at times than Mom was readily able to muster.
At first Mom managed alone, with occasional help from one of my sisters or me. Then we talked her into getting a home health aide in the morning three days a week. We upped that to seven days a week. Then we added a home health aide in the evenings to help get Dad in bed at night. It was a two-person job.
The basic necessities of life expanded to fill my mother’s days. Mom’s life was reduced to inches. Inch-by-inch, Mom got Dad out of bed and into the bathroom after his afternoon naps, helping steady him as he struggled his walker through the hall, one painfully slow step at a time interrupted by complete halts. Inch-by-inch Mom helped Dad navigate getting the food from his plate to his mouth, then chewed and swallowed.
It didn’t matter that entertainment could be obtained through today’s television at 6:05, or 7:23, or 8:09. Mom was helping Dad in the kitchen, the bathroom, or the bedroom. There wasn’t time to watch the television. By the time dinner was done, the bedroom routine began, and then shortly after Mom got Dad in bed she joined him there. Towards the end of her caring for him at home, she said, “Going back to bed at night is the only thing I look forward to all day.”
I know this is a bleak picture. Those trying to maintain a quality of life for their loved one with Alzheimer’s may be leading a bleak life. Some of them are living an inch-by-inch life. They need our help.
A hard road to go down.
My ex husband has Alzheimer’s and he is going down hill so fast. My heart bleeds for him and for my children. There are no happy stories to tell about this, no victories, no funny moments really. It is a struggle, for everyone, inch by inch.
You’re right. I’m not sure people who haven’t experienced it with someone close to them are able to fully realize the anguish involved in so many levels. That’s why I wanted to “reclaim my father” afterwards. I wanted to reset my final memories of him to a better place. I feel for what you and those you care about are going through. It’s just something you have to get through.
It is a brave thing you did. I keep thinking I need to write down, for my children, stories about their Dad. There is no one but me left to tell them. I need to gather my courage and do the right thing.
It would be a wonderful keepsake for them. I have no doubt you are brave enough to do it. Start small.
okay. It feels like a huge project but, yes, I can start small. Breathing.