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.
Blessings!
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!
Well, we’ve just come through the first week of 2018 and have heard the words “Happy New Year” over and over. We rang in the New Year in all different kinds of ways, and now we are back to the day to day grind. Some of us made promises to do something different this year, while others are just trying to not rock the boat and keep things the same. So now what? And why do so many of us focus on making changes at this time of year? Is it because we are unhappy with the current state of our life or is it because we are discontent with decisions we’ve made in the past. Change at the turn of the New Year is enticing because, after all, who doesn’t want a clean slate (or even a “do-over”)?
Change is a constant part of our lives. It happens to us all the time, often against our wishes. When things are going well, we don’t want change. When things are going poorly, we want change, but only on our timetable and on our terms. Real change often interrupts our intent to change. We make promises to ourselves (or others) to do something different but then something outside out control happens, and we are derailed. How many of you are dealing with unexpected changes right now? Some of us are dealing with difficult changes in our jobs, families, health, etc. Some of us suddenly find ourselves as patients while others have been thrust into the role of a caregiver. It is difficult when the New Year brings change to you instead of you bringing change to the New Year. There are also positive changes for some of us. Some have become parents, homeowners, financially stable, and many other things. It isn’t about whether or not change will happen, but how we deal with it.
There is truly a time for everything, and our definitions of good and bad are usually based on limited information. The question is: do we trust the One who actually knows everything or not? Are we going to live through the changes in life like a wind-up toy, going along until it hits a wall and then bounces off and goes another direction until it hits another wall? The reality is that we really do have a choice and the result of our choice will either bring peace or anxiety. If we approach unexpected change as though it is totally up to us to figure out the problem and fix it, then we are going to live a life full of constant stress, because there will always be circumstances we cannot control. On the other hand, if we could realize that what we see as “unexpected” is never a surprise to our Heavenly Father, and that He has promised He is working all things for our ultimate good, then we can live a life of confidence and peace in the midst of every storm. It doesn’t mean it will always feel good, but we can trust that it will eventually all work out.
So I wish you all an amazing 2018! It is my prayer that all of us can learn to lean on what we know in our hearts instead of going it alone. We can become better parents, children, employees, bosses, church members, pastors or whatever other role we may fill. The best way to do that is to fall back into our Father’s arms and let Him show us the paths to walk. And when the next January 1st rolls around, we will be able to share not only our hopes for another year, but our resolutions – our results – from the journey we are embarking on right now. That, my friends, is what a resolution is all about.
Our society places a lot of value on beauty and outward appearance. We think nothing of having work done (or of others having work done) to try and circumvent the effects of aging, and yet we are paying less and less attention to how we look on the inside. We are losing our ability to be civil and courteous, and nowhere is this truth more apparent than on Facebook and other social media sites. Over the past 6 months or so, I have been spending less time on Facebook and much of the time I’ve spent was, or is, hiding posts from people on ALL sides of varying issues (political or other). My tolerance for the intolerance shown by so many people on so many subjects has really worn thin. Before I go any further, let me just say that if you think I’m one of those people who just wants to stick their heads in the sand and not care, or are not willing to be engaged in thoughtful or even passionate discussion, I can assure you nothing is further from the truth. I choose to be very engaged, just not online.
That’s part of what is wrong with instant news. Stories used to have time to develop before everyone heard something and reacted. We’ve seen many stories that turned out not to be as they were originally portrayed, but it was too late to stop the reactions or public opinion – even when the facts finally come out. On top of that, there is so much “fake” news that now exists for the sole purpose of stirring people up, or even worse, slandering or attacking them.
We don’t walk away from people who are rude or aggressive anymore, instead we devolve into them ourselves. We forget that we are talking to human beings, and instead treat each other like animals. We are bullies. We are arrogant and insensitive asses. We devolve into everything we say we aren’t or that we preach against. We watch our friends tear each other down and just sit there. We think, because we don’t read or react to the garbage that rolls through our feeds, that it isn’t affecting us. But it is. It wears on us until we finally crack. I’ve fallen victim to it on several occasions myself. “It” being that almost uncontrollable urge to fight back or snipe back at someone who is being unreasonable or, God forbid, wrong! I’ve given into it on occasion, but it has almost always come with regret at some point.
So why does it matter? It matters because we are conditioning ourselves in ways that are harming us as individuals and as a society. Our “real” lives are in turmoil. We hear of tragedies almost daily where someone has attacked or even killed others. We hear of relationships of all kinds falling apart and everyone is more concerned with blaming each other and making sure they are the one who comes out “looking good.” We watch kids bully and be mean to each other but then whine and cry when someone does the same to them. We wring our hands and wonder why this selfish behavior has become so common, but we refuse to look in the mirror and admit we are part of the problem. Whether we are actually fighting or being a voyeur, we are part of the problem. We are more and more desensitized which makes us less and less self-aware. In our “real” lives, we are becoming quicker to point out others who are being rude, offensive or a host of other negative traits while not seeing our own.
We are ALL humans. We are all imperfect and we all are tempted to get caught up in the drama with which we are constantly bombarded. Instead, let us hold each other close in heart. Let us truly love each other instead of tearing each other down. Let’s purge our social media feeds AND our lives of the things that continually remind us of how we are different we are and start looking at how we are all the same. Yes, it’s time for a “face”lift of a different kind, so I will leave you with this: “Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” (2 Corinthians 4:16)



