[12] Horizons: Preparing Others

Dementia Horizons | Workshop 12 | Preparing Others

Video Module 12 Transcript

Hello, my name is Michael. Well, if you can't tell, my roots are from across the pond, as they say. About 40 years ago, I packed up my suitcase, put on my overcoat, and with bumbershoot in hand to ward off the rain, I hopped on an airplane to explore a faraway land. I never planned to stay, but I met this lovely lady, Christina, and I ended up loving America too, its bright sunshine and big skies. In the end, I settled down and made the good old USA my new home with my beautiful wife, Chrissy.

I've had a great career, relished being with my family and friends, enjoying romantic candlelit dinners with Tina, and traveling the world, but I always loved coming back to our cozy home. Yet here I am in my seventh decade of life, and something was off a bit. I couldn't add the tip on a restaurant tab, and I was finding it hard to dial the telly. Did I say dial the telly? Well, you know what I mean! I couldn't call the channels up on the TV. I didn't know what was wrong, and my wife and kids, well, you call them kids, but they've got kids of their own. Anyway, something was off. Then late one night as we slept, I felt someone was punching me. I was having an awful nightmare. It felt so real, like I was in danger, but I must have lashed out. I nearly hit my darling birdie.

Luckily, she woke up and jumped out of bed. I had no idea. That was the straw that broke her proverbial back. My wife asked me to see a doctor, and I told her that was not in the cards. I was fine and wasn't about to get my head checked. I was having a bad dream.

That weekend, I needed a box of those round things. You know, they go into lamps and light the night. Well, anyway, I got lost going to the hardware store. It took me, I don't know, a couple of hours to figure my way back to our flat. Did I say flat? Huh. That's not right. Anyway, I ignored all my other problems until one afternoon, about a month later. That was the day I nearly clobbered a school bus.

I was lost. I was frantic, and for some reason, my right leg didn't move fast enough to slam on the brakes. I ran right through a stop sign and bam, I caught the tail end of that double decker. Oh, I did it again. Double decker. That's another story. No one was hurt, no major damage. The little ones had all been dropped off, but I felt so bad I needed to figure out what was going on.

Anyway, I confided with my dearest, ah, that woman I'm married to, hmm, sorry, Christina. Anyway, I agreed to see Old Doc Watson, that's what I call him. Sure enough, I didn't do so well on that thing called the memory quiz or whatever. And before long, I needed to get some more tests. Not fun, I'll tell you, but worth it. In fact, good old Doc Watson eventually said it probably wasn't safe for me or others on the road. So I hung up the keys to my old 55. Hey, that's a great Eagles song, isn't it? You probably don't want me to sing a few bars, if you know what I mean. You'd want to hold your ears.

So anyway, my kids suggested I wear one of those ID bands on the wrist to let others know who I was and who I belong to, if I couldn't say, and I love it. It makes me feel more secure. And they gave me a handy little card, the Aware and Share card from the Dementia Society of America®, and I carry it with me everywhere. My wifey carries one too. It's a way to maintain my dignity, but make someone aware that I might say, or act or do something different and unexpected. I share it with people I don't know, and most new places I go, it makes them and me feel better. After that, folks are so kind and understanding.

Everyone, my wife, the kids, the doctors, even my old work colleagues came together to help me. I needed it, because I'm still me and able to share my story. So now I volunteer to help others like you, and I love it.

Once I decided to tell friends and my golfing buddies about my Dementia diagnosis, I realized that they already had a hunch something was wrong. Well, there was some relief that their concerns had a name to it. I was concerned about being stigmatized, not liked anymore. I was going to prepare my family as best I could, but how was my family, my care partners in life? How were they going to go about preparing others: my friends, neighbors, the Wednesday night study group and the other great people I saw each day, like that nice young woman at the grocery store that I enjoyed so much, or the bank teller who always had a smile and a funny bone story for me?

Indeed, I was okay covering up my blunders, but my poor lady, this was all starting to fall on her shoulders, and God knows she has enough challenges with her job, the grandkids, and looking after me. I felt alone in the midst of everyone who loved me, and I knew that even Christina felt a bit embarrassed. However, one way to bust through the myths and the fears and help us cope is to share a few new understandings.

First, my experience is my experience. You may know a relative or neighbor with Dementia and want to compare me to them. Please don't. Each journey is unique and everyone experiences things differently.

I'm learning that communication is really important. The way I communicate will change over time. I tell that lady I'm living with that she'll need to be patient with me, and recognize my brain is changing and give me grace when this happens. I don't think she'll give up on me. I still want to spend time with her. We can still do fun things together, like taking walks in the woods, listening to the Rat Pack, Hank Williams or even the Beatles, or share a lobster down at the dock.

We're all headed to that great glory someday. But while I'm here, I'm living with my Dementia, not suffering or hiding out of sight. Dementia is like anything else that can come our way. Cancer, heart disease, lung disease, accidents, and so much more. Oh, yes, it's not a good thing I have a disease that's causing my Dementia symptoms, but I count my blessings and plan to stay strong. So here are a few things that I'd ask.

• Give me more time to answer a question and please speak more slowly.

• Look me in the eyes and don't talk about me as if I weren't there. Gosh, that feels awful.

• As my challenges become more ducky, become, I mean harder, introduce yourself when you walk into the room, I can tell you I won't want to try to guess your name right now, so please don't ask me to.

• And as hard as it may be, please try to avoid correcting me. I probably will think of things differently or lose a word every once in a while, but that's okay.

• If I do something that doesn't make sense (after all, I did put the laundry in the icebox one day), just go along to get along. I won't feel as anxious.

• If you can avoid starting a sentence with "Do you remember?" That's only going to frustrate me when I can't. Instead, say "I remember when..." and share the experience. That way I can be part of your memory.

• I hope you won't be offended when I want to take some breaks. I'm going to tire more easily. You see, it may not show, but it takes a lot of energy for me to process information throughout the day.

• It is possible I will see people and hear sounds that you can't. It can be frightening, but please, as my parents told me, they had placards all over the city during the Big War that read, "Stay calm and carry on." Yes, that's what they used to say and I feel it's kind of my motto these days. But we'll get through it, with your help and steadiness in the eye of the storm. But gosh, above all, let's make time to laugh together.

• If you are my long lost friend I've known forever, or a new old stranger, and I swear like a sailor, or call you names and get angry, I might even accuse you of stealing my girl or taking stuff out of my dorm room, I want you to know I love you. Even if it's harder for me to show it, my actions are probably not something I can control, but I will never stop loving you.

If you are a care partner now, it's a two-way street. You help me and I'll do my best to help you, but over time, you become more of a caregiver than a care partner. With that said, you play a vital role in preparing, sharing, and widening your circle to include extended family members and old and new acquaintances. Share with them how you cope, what your needs are and what you have learned to make it a tad easier on everyone.

As you start to share this information, others will want to help. Don't go it alone. There are many practical ways folks can assist you.

• Make a list of your daily and weekly to-dos, other tasks someone else can take on to lessen your load or free up more time for your self-care. We all need self care. It feels so good. What might you need, help with grocery shopping? Good. Jolly good.

• You know, you could ask your neighbor every once in a blue moon to run an errand for you, or take your loved one living with Dementia on a stroll down the promenade, or a trip to see old what's his name, the barber.

• How about odd jobs around the flat? I mean the house or the apartment. Can one of the kids down the block mow the lawn, clean up the basement, sweep the sidewalk and the stoop, or pick berries from the backyard for your morning oatmeal?

• Don't forget, huh? That phrase sounds funny coming from me. Okay? Yes. Remember that maybe your sister-in-law is a great cook and could whip up a roast, roast beef, and some yummy Yorkshire pudding. If you don't know that old British recipe, look it up.

• I guess I should mention that if you are so inclined, ask friends or a local service club that does good deeds to take you both to your place of worship for spiritual renewal. You might just want to sing, be social, or find solitude and soak in the scent of dusty pine floorboards, or, I don't know, sit and rejoice in the bands of color streaming through the stained glass windows.

In conclusion, help spread Dementia awareness in your faith community, or civic and fraternal organization, at work, in the neighborhood, and over the internet. Share valuable resources and supportive programs with your family and friends, such as the educational information that comes from noteworthy non-profits like the Dementia Society of America® and others.

Knowledge is empowering. While the news of a loved one living with Dementia can be difficult at times, it can also be an opportunity to strengthen connections, keep the communication open and support one another. Accepting help from family and friends is not only beneficial for the person with Dementia, but also for you.

Jolly good. I've thoroughly enjoyed our time. I hope you did too. Let's face this journey together. Thank you, and please take good care of each other, won't you?