Through all of the years of being a caregiver for Jim, I could never wrap my head around his declines, his seeming ability to be OK and then the next moment not and then the times that he seemed perfectly normal all the while not being able to remember if he had eaten anything that day. There was no consistency. No rhyme or reason. No playbook I could whip out to try to gauge what was coming next. Not knowing what was just around the corner yet knowing the corner was there and something was lurking was not just stressful, but also consuming. My whole world became an underlying current of what is going to happen, what are we going to do and how am I going to be able to do this all and survive?
Well, we survive. Sometimes kicking and screaming and sometimes barely, but we survive.
Part of the frustrations of caregiving can be not being able to understand a disease that we know so little about. When someone tells us they have heart disease, we understand. We comprehend what the heart does, what changes take place, surgeries that can be performed and the recovery that is expected and hoped for. When someone receives a diagnosis of dementia, there is little if any explanation that accompanies the bad news. We are often left to our own devices to seek support, help and answers. There is no game plan for treating the disease and no talk of recovery. It is depressing, isolating and overwhelming.
Moment to moment you don’t know what to anticipate. Will they be able to get dressed? Will they fall? Will they eat? Will they take a shower? Are they washing their hair when they shower? Can they still drive? So many lingering questions that don’t always have a cut and dry answer from one day to the next. Maybe they are able to do some of these things one day, and then the next, they seem like a zombie.
Imagine all your brain controls: thoughts, emotions, actions, memory and recall. Everything every other organ does in our bodies is regulated and controlled by our brains. Swallowing, blinking, breathing.
Now imagine the synapses that are firing in your brain can’t connect. There is a blockage and they can’t relay the message of how to put toothpaste on a toothbrush. The plaques and tangles that are developing in the brain have caused the message to stop before being transmitted fully. But our brains are wondrous and amazing. They work overtime to find a new route around that roadblock. So, eventually, the message of how to put the toothpaste on the toothbrush gets back through. But, the blockages keep multiplying and the instances of messages getting from one part of our brains to another decrease and eventually stop all together. In the meantime, the brain is working so hard to work around the interruptions and disruptions of its normal abilities, it becomes exhausted and tired. So dementia patients end up sleeping a lot and letting their brains rest.
Caregivers never know what to expect at any given moment and must adjust constantly to whatever is changing and reverting back and changing again. Emotionally, they are reminded each time a change happens of their poor prognosis and what that means. Physically they are tired, mentally they are tired, and psychologically they are completely running on fumes. It is hard to remember you aren’t alone. I know I always felt so much pressure to make the right decision at just the right time and keep it all together and make Jim happy and the kids happy and “normal” for as much of their childhood as possible. I am still recovering, a year and a half later. I am still feeling aftershocks and painful flashbacks come out of nowhere.
Our journeys as caregivers all include different paths, but we are all on the same map, searching for the easiest and most direct route to take. Make sure to stop along the way for some breaks and to enjoy the ride. Even thought the scenery may not seem too appealing, it is sacred and beautiful in its own way.