I have written this many times before, one of the keys to effective caregiving is coming to the realization that something has to change and in this case, and most cases, that something is you.
I had my own realization one night, something had to change or I was going to go nuts; and, like a weather change in Amarillo I thought that something was Me.
Me. I had to change my attitude, I had to look past the negatives, and I had to figure out what could be done and how to do it.
I had already tried every technique I had ever learned to improve the relation I had with Dotty, and the relationship she was having with the rest of the world. It just wasn't working. This happened because I was making it about me, not about what was best for Dotty. And, I was not adjusting to the psychological and emotional changes that come with Alzheimer's disease.
Along the road to effective caregiving I had another revelation, that what Dotty and I really had to start doing was
living our life the way we always had.
Please understand, I knew there were going to be constraints to what we could do, constraints caused by the effects of Alzheimer's disease. I knew we would never get back to the old world were we could just get up and go. So I decided we would live our life in this new and different world which I decided to call Alzheimer's World. A world that is one big giant step to the left.
In Alzheimer's World, I don't focus much on what is going to go wrong, or how difficult a situation might become. I focus on the "payoff", the benefits of remaining active and socialized in the real world.
If I believe that Dotty and I can benefit by visiting relatives or friends on a Holiday, by going on a trip away from home for a day or days, then I sit down and figure out how we are going to do it. Yes, I consider everything that can and might go wrong; but, my motivation is always the same, we are going to live our lives -- come hell or high water so to speak.
What I don't do in these trying situations is agonize about the negatives. What I don't do is agonize about what is going to go wrong from time to time. I focus right in on the goal
We are going to live our lives.
Here is one lesson I learned over time.
It is the 364 days before the Holiday trip or event that are most important.
In other words, I am preparing all the time for the trip -- every day. This mission is accomplished by keeping Dotty attached to the world every day -- all 365 days. The world is not our enemy. The enemy is not doing anything all day long and then introducing a big change all at once like a trip or big Holiday event.
The car rides in the bright light, the trips to Walmart, the trips around the block or down the street to see friends. Every single thing I can think of to keep Dotty socialized and attached to the world we do. Ice cream cone here, cup of coffee there, go look at the dogs at the dog run. The list is endless. Make your own list.
Some of these real world tasks are difficult to execute but well worth the effort.
For example, a trip to the gym is not an easy task. It takes a lot of time, effort, and being drowned by the word NO. On the way out of the gym however, Dotty is a nicer, kinder, happier person. See you plug in. Forget about the difficulties, focus on the benefits. By the way, if you are not using the gym you might consider trying it. There are always a lot of people in the gym, a lot of people coming and going. This gets the dementia patient use to being around a lot of new and different people.
I might add here. I think most people over 65 can qualify for a free gym membership (Silver Sneakers). In addition, a good gym will have a good, low impact class for seniors. A class where a person can sit down for the entire 45 minutes and get their exercise. During this 45 minutes you can work out, talk to other people in the gym, have a cup of coffee, or if you prefer, "veg" out.
By the way, when I was using the class for Dotty, Dotty didn't like it. She would curse me out on the way to the gym, on the way into the gym, and when I helped her into her chair for the class, she wouldn't talk to me, and she wouldn't look me in the eye. I plugged into the end result and the benefit. I didn't like the negative, so I blocked it out.
My point here is you need to identify and engage in activities during the 364 days before the Holdiay that will get everyone prepared for the change that comes with the Holiday. You will need to identify activities that keep the dementia patient in the world for 365 days a year. This way going out in the world for the holiday won't be a big shock to the system.
When the caregiver gets on the stick, when they start living life along with the person living with dementia they benefit. In fact, making the extra effort actually improves your life as a caregiver. The positive reinforcement that comes with each accomplishment makes you feel better about yourself. Feeling better about yourself brings you out of the dark side, and on to the bright side. Guess what? You brighten up and so will the person living with dementia.
If you are making the Holiday trip, or going to the big Holiday event it won't be a bed of roses. For sure there will be some trying moments. But, you'll be ready because you dealt with much of this during the prior 364 days of the year.
Think of it as the 80 percent, 20 percent solution. 80 percent of the time it will be good, 20 percent of the time it will be difficult.
Or, you can sit around and convince yourself 100 percent of the time you can't do it, or it won't work.
I know you can do it, and I know most of you will. Of this I am now certain.
More Insight and Advice for Caregivers
Original content Bob DeMarco, the Alzheimer's Reading Room