How should I prepare for the future?
As discussed in Part 1, the newly diagnosed person with Alzheimer’s disease has lots of work to do, as do the family members and friends who are wondering how they can help.
For the most part, an official diagnosis of Alzheimer’s disease doesn’t really change things. If anything, this can be empowering news. Knowing what lies ahead and how to prepare for cognitive changes is better than being caught off guard, or being so deep in denial that successfully navigating change becomes unnecessarily difficult.
1. Get the ugly legal stuff out of the way. Trust me on this: you would rather make informed decisions now than leave major life decisions up in the air. You need to have uncomfortable conversations with your family. You need a will. You need to designate your advocates- the medical power of attorney, the financial power of attorney. And you need to spell out your advance directives. This isn’t just an Alzheimer’s plan, it’s an aging plan. Everybody needs one. Where do you want to live? How much help can you afford? What’s Plan B? By no means does all of this prep work mean you are preparing to die. You are preparing to live.
2. Home Safety Assessment. This can be valuable for anyone and everyone who plans to stay in their homes. An occupational therapist or a certified aging in place specialist (CAPS) will come to your home and identify any potential hazards in your home. They will look at things like entryways, stairs, bathrooms, flooring, thresholds, lighting,… accessibility is key. The sooner you do this the better, even if there are no urgent needs. That way you can gradually modify your home and spread the costs of modifications over time. And habits can be developed that will be useful if and when new learning becomes more difficult. Maybe a second bannister on the stairway this year, and a railing on the front porch steps next year. And let’s face it, as Alzheimer’s progresses folks don’t tend to be very agreeable to change. Better to plan and implement sooner than later.
3. Memory Support. This one is a big stressor. It is helpful to know, however, what kind of memory loss people with Alzheimer’s face. The hippocampus is responsible for the storage of new memories, and this is usually what starts to fail first. So new information is very hard to learn, and recent information is hard to retain. Much of this is also tied to language, which also starts to weaken as folks have difficulty finding the right words or understanding verbal or written instructions. Motor memory, however, is well preserved until late into the disease. This means that although someone with Alzheimer’s disease might not be able to follow your directions to locate the bathroom (declarative memory), they can learn to find the bathroom by repeatedly walking there (procedural/motor memory). The Secret Sauce? Exercise language and declarative memory just as you would a weak muscle, but use motor memory as your go to for new learning. Don’t depend on verbal language for communication, but supplement with demonstration, pictures, and visual cues. Develop schedules, safe habits, a system for self-checking yourself that just becomes deeply ingrained in your daily routine. Learn by doing, not by talking.
3. Attention! It may interest you to know that if you forgot where you put your keys, it may not necessarily be a memory problem. It could be that you weren’t paying attention when you set them down. Attention is a big deal… just as big as memory. Attention allows you to shift from one thought or action to another and not lose your place. Attention is how you are able to drive a car down the street and process so much information at once- your speed, the speed limit sign, the amount of gas in the tank, traffic, stop lights, school buses, pedestrians… your brain is able to attend to multiple things at once and switch back and forth as needed. Keeping attention skills going is a primary goal of cognitive remediation. Practice attending to a basketball game- who’s playing, who’s winning, what’s the score? Also, practice really focusing on something you don’t want to forget. In fact, say it out loud and watch yourself complete the action, “I am putting my watch into my jewelry box.”
4. Declutter! Most people do not realize the amount of “stuff” they accumulate during their lifetimes. Some stuff has actual value, some stuff has sentimental value, and some stuff just takes up space. The brain is easily distracted by stuff- locating things, remembering where things are, and using things properly is much easier in a simplified environment.
6. Call your local Alzheimer’s Association. The Alzheimer’s Association is such a gift to the world. The Alzheimer’s Association has so many resources and educational materials to share. They are the voice for advocacy and funding, and the sympathetic ears that will understand what you are going through. Do it now: http://www.alz.org