If you listened to our podcast today, you will have heard how about two years ago Tim Alden was Diagnosed with Dementia. Now, this is not that unusual. 10 million cases are diagnosed annually. What is unusual was the good humored determination with which they set out to navigate this stage of life.
We’re lucky to have Tam’s story below, as originally published in The Voice, publication of Panorama.org Also available is the heart warming movie made for PanoramaTV, produced by Brian Hovis. We’ve embedded that in Tam’s story for you to watch.
A New Wave to Ride
BY TAMRA ALDEN
From The Voice
It’s fear. Fear that people will see our gray hair, glasses, unfashionable clothing and make quick assumptions of who we are, old people on the downhill side of life, with slow reflexes, expressing world views seen through a 70+ year old lens of history, and now out of touch. The last thing we want to be accused of is “losing it” mentally. These were my thoughts when I began noticing my husband of 53 years doing things that seemed a bit off. I didn’t want to accuse him of “losing it.” So, I quietly observed and became more aware, going behind with corrections if needed.
About a year later, a trip to Urgent Care changed our world. We thought it would be a simple diagnosis of a bladder infection. Lab results were negative for that, but it piqued the doctor’s curiosity enough to request a brain scan, which eventually revealed microvascular dementia. This dire diagnosis opened doors to a brighter world for both of us.
Tim has some l
ogic lapses along with complete voids in his memory. He was relieved to know why things were becoming increasingly frustrating, and I was relieved that it was now okay to talk openly, and yes, even joke about our new reality. Our attitude is, “Well, this will be interesting.” It’s not the end of anything. Well, yes, it is the end of Tim driving our new car, but he’s still golfing and doing other things he enjoys. For me it’s an opportunity to keep my mind sharp, thinking of new ways to do things and staying ahead of potential problems.
Tim has embraced his diagnosis. He made the decision to share this quirky journey with our friends and family, relieving us of the stress of trying to keep this secret. His attitude is, “Why not? I can’t do anything about it.” We’ve been embraced with love and care by our wonderful friends and neighbors here at Panorama. We’ve also received numerous offers of help. People have complimented Tim on his courage to step forward and be open with his new challenge. Most importantly, people know that it’s okay to ask Tim if they think he may be confused or in need of a little memory jog. He will be the first person to announce that it’s finally official, “I’m demented.”
I love that Tim feels safe to ask, “Is it me or did they change this?” If he has no memory of something, I’ll just prattle on with comments related to the event, time, place, or people as if I hadn’t noticed that it’s not yet clicking for him. Frequently, one of the comments will be the key that opens the door to that memory. I never say, “Don’t you remember?” or “How could you forget?” I never make a big deal of it. I just continue with the conversation. Tim has a most adorable “tell” when something isn’t making sense. With a blank look he cocks his head like the dog listening to the old RCA phonograph. I simply ask, “What’s up?” or “Can I help with something?” using a positive lilt to my voice. I never ask, “What’s wrong?” Tim will explain, as best he can, what it is at that moment that doesn’t make sense to him. Then I get the brain-gymnastic joy of coming up with as many references as I can to see if I can find a “key” to unlock his memory or understanding of the situation. It doesn’t always work, but it’s fun to try, and Tim is game. Plus, I love another opportunity for open communication.
As I notice challenges recurring, I wonder, “What can I do to fix this?” It might be as simple as moving something to a location where Tim seems to think it is or removing something that he shouldn’t have to worry about anymore. When Tim is telling me a story that, sometimes, is missing needed context, I stop, really make eye contact, and listen. Often, he doesn’t understand why I can’t comprehend what he’s trying to tell me. After all, he knows what he’s trying to say. Unfortunately, Tim can’t reciprocate with hyper attention to me. I need to remember that he’s not being rude or uncaring, but that his brain can’t focus and pay attention as it did in the past. It’s okay. It’s not Tim’s fault, any more than it’s someone’s fault for contracting any other disease.
Some things that are helping so far are:
- Every Sunday morning, I go through the Panorama News and our calendars. I write appointments and events for each day of the week on a weekly magnetic whiteboard on the fridge.
- I put Tim’s online calendar on my devices, so I can look ahead to correct or add to his upcoming events to avoid confusion.
- I love the Boogie Board Jot reusable writing tablet! If Tim wonders where I am, he knows the answer will be on the Jot. To catch his attention, I set a bottle of Irish cream liqueur next to it on the counter. I know this will catch his attention if the Boogie Board Jot doesn’t.
- First thing every morning, I gather my thoughts into a bullet-pointed, clearly sectioned email that I send to Tim. I list our activities and appointments for the day in one section. In another section I ask if he has anything he’d like to do that day. Another place I give him two choices for dinner options. Tim is now easily overwhelmed with multiple choices and decisions. He loves deciding between just two dinner options. He can then refer to this email or even print it.
As important as Tim is to me, I’ve become extremely important to him. I saw this transition occur many years ago as Tim’s dad became more and more mentally untethered from Alzheimer’s disease. He depended on his wife to provide a solid anchor and safe harbor. I respect the increasing fear that may arise as Tim’s ability falters. He knows that if something happens to me, he will be, well, screwed. We have no children or siblings to rely on for support. Legal documents need to be in place to manage his affairs. Tim jokes that one of those legal documents should be a declaration that nothing is allowed to happen to me first. Thank goodness for Panorama and thank you to the Benevolent Fund’s ILS social service advisors. Living at Panorama helps give us both added peace of mind.
The other day I couldn’t unlock a memory that Tim had lost. Maybe that memory will resurface, and maybe it will be lost forever. It gave me a jolt to realize that some of our nearly 55 years together will no longer be memories, experiences, and inside jokes that we share. It will be just my memory to cherish, even more reason to make this time together special, fun, and treasured.
In the meantime, I want to make sure that Tim and I are still partners sharing this journey together in gratitude for each other’s uniqueness and in appreciation and celebration of nearly 55 years together. Nothing is certain; there are no timetables to follow. We don’t know what to expect. Each day is a new wave for us to ride together with laughter and joy.