The first time I heard the phrase Alzheimer’s World I was sitting around a large table at the Alzheimer’s Society office. It was a mixed group of persons with Alzheimer’s disease and other dementia and their caregivers. We were learning about the disease, its progression and available resources. What they could not teach us was how to live in that alternate world.
Caregivers have no choice. They do live in two worlds, the everyday one we know as the real world and the one that is Alzheimer’s world that our loved ones live in. If we are to be successful caregivers we must learn to also live in that other world.
It is difficult. Alzheimer’s world is a backwards world because your loved one is on a backwards journey. Right now my Bert is 85 going on four. A different puzzle is presented each and every day which only you, the care giver, can solve. Today he puts on his shoes one brown, one black. There is an easy solution to that. You make a joke, point it out and he changes them. He picks up a slice of bread and calls it cheese. No problem, you correct it or you say: “that is strange looking cheese.” That brings on a laugh and: “Did I call it cheese?”
Alzheimer’s world is one of anxiety. You can empathize. What if you wake up one morning look at your toothbrush and had no clue what it is, what it does but know you use this thing every morning? Today you look at a banana and call it steak, even though somehow you know that is the wrong word? How about getting up to go to the bathroom and being lost in a condo? Would you like to look at a washcloth, while sitting in the bathtub yet completely at a loss of what to do with it?
It gets a little more complicated, of course. These little slips are unimportant in themselves when they happen once but when they become habit it is a signal that the disease has gained a tiny bit more ground. Then the caregiver steps in. You take the washcloth and prepare it and explain or show by gestures how it is to be used. Every day I say to my Bert: “Here, start at your face and work your way down.” He gets to work. He now knows what to do and knows why he had that piece of cloth in his hands. More important he is doing it himself. Dignity is maintained.
Alzheimer’s world is suspicion, anger, feeling lost as well as a loss of control. It is confusion, dependency, a vast expanse of bewilderment. It is a loss of time, place, space, skills. It is disorienting as your entire world becomes narrower and your trust is placed in that one who is always there that you ‘shadow’, that you trust.
The caregiver cannot stand outside in the real world and look in awe or dismay at Alzheimer’s world. You must enter it, you must live in it. Empathy is your power, patience is your tool. The brain is still a mystery. We know in part only. As a caregiver no matter how bizarre that alternate world seems you must suspend your disbelief and go with your loved one into that world. You ask yourself: “What is it like to be so confused you have to give up your autonomy to someone else?” Then and only then can you serve with understanding and love.
I look at my Bert and when he cannot find the words or gets lost between the kitchen and the laundry I wonder what is happening in his brain. Does he feel as if he is trying to swim in tar? Does he feel he is in a vacuum? No wonder dementia patients get angry and lash out at the ones nearest and dearest, the ones they trust implicitly. We are there, easy targets and maybe this is the way they have a bit of control. They are engaged in a battle of heroic proportions to stay ahead of an incomprehensible disease. They wage a daily battle just to BE.
The Meander: No one can have a desire to live completely in Alzheimer’s world. It is too awful to contemplate. Yet, as bizarre as this sounds, there are times when you look at what is happening in the ‘real’ world and it is a relief to step into Alzheimer’s world and just focus on your loved one.