At the window with Dementia - Episode 29 "Looking through the window at dementia"

In this episode I talk about the importance of having good credible information about dementia and how you can get it.

Transcript

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If you've listened to any of my previous episodes, then you know I usually will pick a topic related to dementia and caregiving and I spend the entire episode on that particular topic. This time I'm going to talk about something from a different perspective. This time it's going to be a bit more personal. For those of you again who have listened to previous episodes, you know that not only do I treat people with memory impairment, Alzheimer's, and other types of dementia and I also run a support group, but I also am a family member of many people with various types of dementia. So for me, this topic is not just a professional topic or a topic of interest. But it's deeply personal. My mother, who lives with us, she has memory impairment. And I suspect that it is a vascular type of dementia that she is experiencing. I have other family members who have Lewy body dementia, A few that have Alzheimer's, and a couple that has mixed, which would be more than one type of dementia.

So when I say it is incredibly personal. It is. And many of you know that the number one risk factor for developing Alzheimer's type of dementia is advancing age. So it's a mixed blessing; the longer we live, the greater our risk of developing Alzheimer's is. I also know that given the incredible number of family members who have dimensioned my family on both sides might I say, I know I'm at risk. And I do everything that I can do to reduce my risk factors. I eat well; I get good sleep. I could probably improve the amount of exercise I get. I definitely keep my brain stimulated. I know what needs to happen to reduce the risk factors. But that's only a small portion of your vulnerability, your risk factors. Some are genetic; some are environmental. So we do what we can, and we hope for the best.

What I want to talk about today, though, is what do you do when you have a situation that you're facing where a loved one has been diagnosed with either mild cognitive impairment, which often but not always is a precursor to dementia or what if they have been diagnosed with a type of dementia. And you've decided to be their caregiver or their support system, either one. Where do you go for resources? You can only go to your doctor's office so often, and those visits are time-sensitive. You can Google things, but how do you know if the information that you're getting is accurate. Anyone can post on Google. How do you know what information is real, credible, and what's just someone's opinion?

I run a support group, and since the pandemic, we have gone from meeting once a month in-person to every week online through Zoom. We've gotten so close. What has become so apparent is that regardless of how connected you are, you're still grappling with, "What do you do?" "How do you handle this?" "What's ahead?" "What should I anticipate?" "What do I need to watch out for?" "How do I take care of myself?". And these are all great questions. And we're talking about the pandemic right now in terms of COVID-19, but there's another pandemic going on, and the pandemic is dementia; medical advances have allowed the population to live longer, and as I previously mentioned, advancing age is the number one risk factor to developing Alzheimer's. And there are many other types of dementia. So my goal for this episode is to help you obtain good quality information. Because with information comes empowerment, and no, it's true it is not going to stop disease progression. Perhaps, it could slow it down. But what this good information will do is not only will it help you navigate through this very very difficult journey, but it will also help you, the caregiver, to take care of yourself. Because consider this: If you don't take care of yourself, what happens to your loved one that you're caring for? Who's going to step into your shoes and take your place? If suddenly you find yourself in a position where you can't take care of your loved one.

Would you be surprised to find out that many more than 50% of caregivers pass before the person that they care for? Think about it. It really does make sense. Caregivers neglect caring for themselves. You will put your own needs on the back burner because you feel that attending to your loved ones needs are more urgent. The problem is, you often forego those wellness checks, those screenings, those doctor's visits that might identify that you yourself have some type of a health issue. So, I want to tell you all about a book. This book is called "Looking through the window at dementia." It's a book that I wrote. And I'm deeply passionate about, and I'm so proud of it. I have to say because I'm in my mid-50s. As I mentioned, dementia is up close and personal for me not only in my professional life but in my personal life. I just published it 24 hours ago, and I put it on Facebook. I haven't done any marketing other than just to let my friends and family know about it. I am so overwhelmed and blessed and touched to tell you that today, I woke up to find out that Amazon ranked the number one release in the dementia category. After just 24 hours, I am speechless. When I first looked this morning. It was ranked number 21 is the best seller in the category of Alzheimer's and number 20 in the category of dementia. To say I'm speechless. That's an understatement. Right before I started the podcast, I decided to go ahead and check again. Now we've moved up; we're number 15, is the best seller in the Alzheimer's category, and number 19 as a best seller in the dementia category. What that tells me is that the need for this type of information is profound, immeasurable.

I've been getting messages from my friends who tell me they're buying multiple copies, one for themselves and then one to give to a friend that they know is going through the same struggle that we are. I've even had some messages from the parents of some of my friends saying, "Thank you. I just purchased a copy."

This is an affirmation to me that the need for information and guidance has not been fulfilled. I want to be your resource. I want you to feel that you're not alone. I want you to know that you're connected, that other people understand the struggles that you face. They share in the difficult journey of watching a loved one slip away a little bit every day. Please know that at the moment when you feel most isolated and most frustrated that there are others who share your exact feelings. If you feel that you're in a moment of crisis, please reach out to the Alzheimer's Association. They have an 800 number. That is operated by skilled counselors, 24 seven 365 days a year. The phone number is 800 272 3900. Anyone can pick up the phone and know that there is someone on the other end of the line, who will give you the comforting words you need to hear, the strategies that you need to employ. And they will help you get through this crisis.

When you're not in crisis, and you're just looking for some words of encouragement, some information, I hope you decide to go ahead and read this book. Again, it's called "Looking through the window at dementia." It's available on Amazon. I would love to hear your feedback about it. It's something that I think will be helpful to everybody who has been touched by this awful, awful disease, for those of you who are fortunate and don't have any first-hand experience with someone experiencing some type of memory loss. I hope that continues. But just know, the chances are at some point in your life. You, too, will be touched, personally, by a loved one who is impacted by dementia. I also encourage you to go ahead and check out my website. It's CompassionateEducation.com. We have just recently launched something that we're calling "The Caregiver Survival Guide." This handbook is something that will help you prepare for doctor's visits to help you anticipate the next hurdle you're going to have to overcome. It will give you information, quality information about what's involved in a cognitive workup. What does this medical term mean? What is this type of dementia, and how does it differ from another type of dementia.? What exactly do these different memory supporting medications do. Who are they for? all of this information can be found in "The Caregiver Survival Guide". This will help you become an organized, prepared caregiver, as well as an informed consumer, and you are a consumer. You are a consumer of healthcare. You have a say in this; it is a team approach it needs to be a team approach. Go to my website, and look under the caregiver guide tab. Everything you need to know is there. I know in previous episodes, I have not promoted anything. But these two items, "Looking through the window at dementia" and "The Caregiver Survival Guide," I think, are two items that every caregiver will benefit from. Anyway, thank you for listening to my podcast. I hope you decide to subscribe to. I release new episodes every Tuesday. You can go to my website and listen to all the previous episodes as well. I'd love to hear your feedback. Thanks so much for listening. I wish you all a very good day and thank you again for everything that you do. You all are amazing.