Join the Journey: Canaries in the coal mine for caregivers

I have wonderful opportunities to work with families with loved ones with Alzheimer’s dementia. One of the most valuable services I provide them is helping them with understanding what’s happening and why. The first question I’ll ask is “when did you first notice symptoms?” As Alzheimer’s is a slow, progressive disease, the changes will initially be very subtle. Forgetting a recipe for a dish they’ve made for years, forgetting their way to a location they’ve been going to for years or making a mess of the checkbook are just some of the early signs.

A popular reminder in this field is that “it’s not forgetting where the car keys are, it’s forgetting what the car keys are for.” Many find great consolation in that. Most of us will become victims of what is known as N.A.R.M.L., or Normal Age-Related Memory Loss. Our brain has a tendency to prioritize what we need to remember. How many of you, when you were back in school, knew your locker combination and had it burned into your memory instantly? How many of you can remember old telephone numbers? For some strange reason, I can still remember my Great Aunt Eleanor’s phone number back in Winnetka, Illinois. She’s been gone for almost 50 years and I haven’t lived in Illinois for 60 years.

Let’s look a little deeper into what demonstrates N.A.R.M.L. What are some examples? Well we all make a bad decision occasionally or we may miss a monthly payment. I’ve never become concerned when seniors forget the day of the week because in many of their worlds, every day is the same. If they remember it later? No problem. We may all have a difficulty looking for a right word, and who hasn’t misplaced something from keys to a wallet or glasses? I have glasses to help me find my glasses.

If you are noticing symptoms, you need to understand that the pathology of the disease has been at work from 10 to 30 years. So what should you be looking for?

Memory that disrupts their daily life and yours. Asking the same questions over and over and/or using memory aids or lists to help remember.

As earlier mentioned, challenges with following recipes or keeping records.

Difficulty with tasks like the rules of a game they’ve played for years or making a simple list.

Not being oriented to time and place. Where am I? How did I get here?

Understanding visual images and having trouble with spacial perception, e.g. that chair could be farther away than they realize. Also a big deal if they still drive.

Problems with finding the right word or word retrieval.

Hiding things and forgetting where they are. Worse, blaming you or someone else for taking them.

Bad judgment, e.g. being irresponsible with money or not paying attention to their hygiene.

Social withdrawal as a result of their not being able to process, understand conversations or feel comfortable in a strange environment.

Mood or personality changes. They’re confused, paranoid, fearful and anxious.

Being proactive as soon as possible is critical and procrastinating is one of the worse things you can do. Denying what your loved one is experiencing and hoping it will go away is beyond wishful thinking. Don’t deny them access to medications that can and will help them with paranoia and anxiety. Medications that will not only help them, but help you as a caregiver.

While you’re at it, become a student of the disease. Find a support group. You’ll be surprised how helpful they can be. Use the Alzheimer’s Association website for information and write down their 24-hour Help Line number (800-272-3900), seven days a week. Facts, stats, a live chat board ... it’s all there for you. Take advantage of it all.

Questions? Email me at repe@careforcaregivers.org. Join The Journey.