Dementia’s Currency: Change

For a group who seems to overwhelmingly despise change, we humans certainly endure a lot of it throughout our lives. Some changes are good: a wedding, a birth, a new job. Other changes, well they’re not so good: your new neighbors leave their barking dog outside, your friend moves away and you drift apart. Or a doctor springs the news that a disease is eroding your loved one’s memory.

Before we had a formal diagnosis, Grandma’s confusing conversations definitely indicated something had changed. Then the doctor called it “Alzheimer’s,” and there was nothing to do but brace for the impact that change was going to bring.

Ironically, my grandfather being simultaneously diagnosed with “unspecified dementia” didn’t seem to pack the same punch as the word “Alzheimer’s” did—a tribute to the media, no doubt, which seems to use the word “Alzheimer’s” much more frequently than “dementia.” 

The truth is that Alzheimer’s is actually a form of dementia—with dementia being an “umbrella” term, and Alzheimer’s Disease under that umbrella as only one of several different dementia types. But enough of the textbook stuff; the bottom line is the diagnosis brings the kind of change that leaves you hollowed out, grieved, devastated.

Once there’s an actual diagnosis, you find the caregiver role is inescapable. You love this person who is newly-diagnosed, and they definitely need you, but you are challenged by the fact that they aren’t cognizant of their need. Even so, you’ll move heaven and earth trying to provide care for them. 

You’ll find your new role makes you bring out your Power of Attorney documents again and again. You’ll sign your name hundreds of times on their behalf, wondering all the while if there’s not something more, something better, you could do. All you really want to do is visit with them and talk to them the way you used to; but the disease—which you find maddening—won’t permit that. Your pain grows as their memories fade away, and before you know it, you’re the stranger in their room. And then you ruminate again about how much has changed. 

I can speak so clearly about the role because I lived it out as I cared for two people at the same time, and there’s no substitute for experience. So, as an experienced caregiver, let me encourage you to not lose yourself among the swirl of changes happening to your loved one. I am a staunch advocate for counseling; go talk to someone about what you’re going through. In the counselor’s chair you can express your sadness, hurt, frustration, exasperation, and yes, anger, in a healthy way. 

Many churches have counseling programs, or a quick internet search can yield the names of numerous professional counselors in your area. It’s worth your time and effort to find someone with whom you can sit down and examine how the changes in your loved one are deeply affecting you, and then learn what strategies are available to help you walk the journey to its end. 

Reach out for help; you can’t imagine how much a caring, listening ear can support you along the arduous road of caregiving.