Although I might be dating myself with that song-cue of a title, I want to share something very important with you about an issue that is affecting more and more of us, an issue that is leaving families hurt, lost and confused about what to do or where to turn. This issue is the condition called Dementia, and it not only affects older people but people of all ages. They are even finding new strains appearing in young children. I know this is a bit of a departure from my normal posts, but it is one to which many of you can relate.
Dementia, in any form it manifests, is devastating. I know first-hand, because my dad, who is the most brilliant man I ever knew, has now been walking this journey for a number of years. As a result, so have the rest of us. This disease doesn’t just affect the patient; it sinks its teeth into every relationship surrounding them and wreaks havoc in the lives of everyone who loves them. If you had told me it was possible for my dad to struggle like I’ve seen him do in recent years, I would have told you that you were out of your mind. Yet, here we are. Some days it’s yesterday all over again, and other days it’s a brand new world.
Anyone who has been affected in one way or another by the devastating aspects of any form of dementia – either as patient or care partner- can relate to the myriad of challenges, frustrations and griefs that become a part of every day life. I heard others talk about having a loved one with dementia, and my heart always went out to them, but the truth is that I had no clue about the depth of what they were walking through. That all changed when this disease hit my own family.
Dementia is an umbrella term, under which fall a large number of different types of the disease. Alzheimer’s, for example, is simply the most common type of dementia, but there is Lewy Body, Frontotemporal, Vascular Dementia, and a host of others. Dementia is not a memory problem; it is brain failure. Just like any other organ can fail, the brain can experience failure. Where that failure first manifests itself will determine the functions that are the first to begin diminishing. My dad did not start out with memory problems. You could ask him about things and talk with him, never knowing there was a problem at all. We did however start to notice he was starting to struggle with problem solving, or things involving processes or sequencing. We saw the signs but never recognized them. We just blamed it on not knowing technology or being tired and stressed. Because he didn’t have any trouble with remembering people, events, stories or anything else, it never occurred to us in the beginning that he might have an actual issue going on. We were wrong.
It wasn’t until things really got noticeable with Dad that I began researching dementia and what to do. By God’s grace, I stumbled upon a 3-minute video of a woman named Teepa Snow, and I was captivated. (Here is the video that started it all: Teepa – Communicating with a person with Dementia ) Immediately I knew I was in over my head, but I also felt a huge relief that someone could make aspects of this disease so easy to understand, (and with a great sense of humor to boot). I immersed myself in her videos and website (www.teepasnow.com). I took webinars and attended a wonderful Care Partner Series that was a cross between a class and a support group…twice! Teepa, and the way she imparts coping mechanisms and techniques in how to walk this journey, absolutely changed the trajectory of ours. Did it stop the disease? Nope. Did it change the grief and constant changes that come with brain failure? Nope. What it DID change, was greatly reducing the feeling of isolation that comes when your world shrinks as you care for a loved one with this disease. What it changed was how we viewed this disease. It provided ways for those of us who love Dad, to offer support for him, and each other, in ways we wouldn’t have known otherwise.
As of right now, there has not been a single survivor of this disease. Let that sink in for a moment. We have found ways to mitigate some of the effects of it, but it still remains a 100% fatal condition. That may sound harsh, but it is the reality. There is no currently no cure. We have done a great job in this country highlighting all kinds of diseases and raising money for research, but this disease falls through the cracks sometimes. Maybe it’s because it is often a private battle that still contains a stigma that causes people to be afraid to discuss it openly. Maybe it’s because people who would normally be out there raising money for the cause are far too busy just trying to survive from day to day as they care for their loved ones. Whatever the reason, we need to get busy doing all we can to raise money for research, while raising awareness and educating others, so that we can reduce the stigma associated with this disease.
My Dad is still the most brilliant man I know, and every so often I get a glimpse of that same man during a visit or conversation with him. Underneath the looping conversations or behavior is still an amazing, loving, funny, demanding, professional and successful man; it just takes a little more to see past the surface now. Most people who encounter those with brain failure seem to focus so much on what the person has lost in functionality, but I agree with Teepa that we need to be focusing on what someone can still do! When we focus on the skills and abilities that remain in a dementia patient, we are able to bring out the person they’ve always been. Unfortunately, that also means letting go of what we expected or how we think things should be, and embrace what is right in front of us. Now that I think about it, that’s not a bad way to live our lives anyway.
NOTE: I will be participating in the “Walk To End Alzheimer’s” on October 12, 2019 in our local community. I have never been one to ask for financial support for a cause, but this one is near and dear to my heart, as it is may of yours as well. If you can make a donation to join the fight for Alzheimer’s first survivor, it would be so appreciated. It doesn’t matter if it is one dollar, it absolutely makes a difference! Thank you!