The Author’s Show Interview of Dementia Expert Pam Ostrowski
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Hi, this is The Author’s Show, and I’m your host, Linda Thompson. When the first sentence of a book synopsis begins with and I quote, “If your loved one has been diagnosed with Alzheimer’s, be prepared for anything, it can be a shocking disease,” unquote. You just know that you’re in for an emotional journey. Our author Pam Ostrowski has written “It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey,”and it tells a lot about her own personal journey. Pam is here to share more. Pam, welcome to The Author’s Show.
Thank you so much, Linda, I appreciate it and look forward to having a chat with you about the book today.
Well, Pam, will you give us a quick overview of It’s Not That Simple.
Absolutely. So it’s really a guidebook for family members, whether that is adult children or spouse on walking through the Alzheimer’s journey. And the reason why I wanted to share my story with my 14 year journey with my mom and dad was that you can learn a lot in that time period. And I basically wanted to share the lessons I learned the mistakes that I made. And let others know that this is not a journey that has to be filled with guilt and regret and sadness and grief. It can be very transformational. But you have to know how to view the journey, how to cope with the emotions, and what to do in order to provide the best care possible for your loved one with dementia. So that’s the purpose behind the book is a little bit of story, many dementia facts, conversation starters, and just a really good reference book for those on this journey.
When most of us hear the word Alzheimer’s or dementia, we shudder and hope that it never affects us in any way. What were your first thoughts when you learn that your mother had been diagnosed?
Well, it happened actually in a flower nursery, it was kind of a flower shop with the US Postal Service inside of it. And mom had unreasonable anxiety about dad not making the the line to mail the bill, I had to take her face in my hands and look her right in the eye and say, it’s going to be okay, the water bill will make it to the provider on time, we don’t have to worry about it. And there was this really sad little fearful girl behind those eyes. And I thought, Oh my gosh, we are in for a ride.
And that was the first time that I noticed her behaviors and really started tuning in, you know, being able to then observe and ask her questions about some of you know, what did you have for lunch? versus, you know, did you guys go out to eat, which would have been a yes or no question. So that was the first thing that came to mind, I need to get prepared for this. And I moved them within eight months. I moved them to Phoenix from New Hampshire. So that was my first action. I just packed them up, had them move and come out by me so that I could observe her behavior, one on one, in person.
Well, Pam, not only was your mother diagnosed with Alzheimer’s, but your father was afflicted with dementia, were you dealing with both at the same time? Or what was the timeline of your journey?
So dad didn’t develop dementia until about two years before he passed. So mom started in 2001 of the by 2007, she needed to move to a care community and dad moved with her. So that was 2007. And then a couple of years later, is when dad really started to show significant signs of dementia. It was the both of them at the same time. Yes.
You talked a little bit about recognizing your mother’s consternation about getting a letter mailed out on time. Was that the first introduction you’d ever had to Alzheimer’s and dementia, or were you familiar with what to look for at that time?
No, I had no clue. It just came out of the middle of nowhere. And that was the reason why I started to pay attention to any additional behaviors that seemed unusual. I knew nothin. You know, I’d heard of it. But you know, back in 2001, and even today, it’s kind of a word that people don’t like to use
You’re not kidding about that. So what is your personal view of how this disease affects those closest to the one with it? And what do you tell family members about caring for not only their loved one, but the importance of caring for themselves,
The challege that family members haveand that I think is so important to realize is that caring for someone with dementia is not the same as caring for someone with a heart attack or a stroke or cancer. This individual is losing their ability to live their life normally.
There’s no way that a family member can look at that individual and try to convince them to come back to regain those memories that they’re losing, or to remember how to tie their shoes or take a shower or brush their teeth. And it’s all of those foundational tasks that we learned as children that make it so painful to watch your parent, particularly or your spouse, fail at those tasks. So I work with them around the denial that this isn’t happening, to handling fear, and all of the elements and other emotions that come with this and that create analysis paralysis about what should we do next.
Pam, how can a person determine if what we tend to think of as senior moments? Or if it is much more like Alzheimer’s or dementia?
Well, you know, I address that in the book in detail, because it’s important to understand the differences between the two and normal senior aging. As we get older, it takes us longer to respond to questions. It’s just natural. The brain is shrinking.
There are some things like pseudo dementia that are a result of lack of nutrition and hydration and those types of things which are actually very prominent in seniors. And there’s no easy answer. It’s very individual. The disease and the condition of dementia is very unique to each individual. So you really have to read the book, get the details and understand how the two types of both dementia and Alzheimer’s disease function for individuals.
While you were writing your book, were you picturing any particular type of reader or is this for everybody?
I would say me, I wrote it for, for me, the adult child who is very close to their parents loves them to death, best friends, you know, really close, because those are the people who are going to notice the differences the soonest, so I did write it for adult children. It is relevant to spouses as well, because there’s a lot of detailed information about what to look for from behaviors, conversation starters, and that type of thing. But I wrote it from my perspective as an adult child going through this with our parents,
is It’s Not That Simple similar to anything else we may have read on the subject?
I would like to say No, it isn’t. Because there are other books out there about an adult child talking about their experience. But those aren’t guidebooks. They’re more stories about what they went through. And I created mine as a guide book, because I really, when I was going through this wanted lessons, I wanted someone to tell me, what am I looking for? What do I do? what’s coming? and I couldn’t find a book that had that. So that I think makes It’s Not That Simple very unique.
You are an Alzheimer’s family consultant. Please tell us a little bit about what you do in this role.
I wanted to sit down one to one with families and be able to listen to their concerns, their fears, what their questions were. The people I’ve talked with have said, Oh, I don’t even know where to start. And that’s why reading the book is helpful, because it helps them form those questions. Alzheimer’s Family Consulting is a combination of speaking, trying to get as much education out there as possible for family members, as well as providing one to one consulting services and of course, selling the book.
What provided the inspiration for your book title?
Well, I was talking to a care community director, and she was walking me through the process of how I would sign up my parents for moving them in. And she just kind of said, well, you do this and you do this, and you do this, then you do that. And that’s it, then then we’re all set. And I looked at her and said “it’s not that simple.”
I found myself saying that in almost Gosh, almost weekly, when something would happen. We’d talk to a doctor or we talked to an activities director or you know, whoever the medical staff might be, and it was always Wow, it’s just not that simple. So that became kind of my mantra.
I’ve always found it amazing that care directors and people in charge of other people needing help are so totally unaware of what’s really required. Did you find that in almost all cases when you are going through it?
I think it’s the family members that seem to be the least knowledgeable about how Alzheimer’s in particular, but of course, any type of dementia because there’s 70 different kinds, that they seem to be the ones who need the most help, because you want this individual to get care that you would provide yourself.
The difference is, in the care communities, they have structure and processes to protect everyone, and to provide the best stimulation and socialization possible. And that isn’t something that we as family members understand at all. I really do think care communities go a long way in learning about dementia, and how to work with these individuals to provide them with the best environment possible.
In your book, Pam, you stressed the need for a care plan. What is that? And why is it so important?
Well, without a plan, you’re in trouble. The reason why a plan is so important, as applies to almost all things in life, is that it allows you to prepare and in this particular journey, preparing emotionally and financially, personally. It’s not as if with dementia, that you can quit your job and live with your loved one, and care for them throughout the rest of this journey.
Because you alone can’t provide the stimulation and socialization. You’re turning into a caregiver and losing your relationship with that individual. So it’s a very complicated situation, unlike any other disease. And so it’s really important to go through step by step, what it is that you need to do, and each trigger point of what creates the next behavior or the next change or evolution in your loved one’s care.
Oh, Pam, I know that humor is great for healing. Did you find that even with your mom and dad or primarily away from them, did you tend to try to find humor in what you’re going through just in order to make it through the next day.
I think the interesting thing about humor that I used was particularly with my father, because he was so sad, because my mom, they were so in love, and they’d been married for over 60 years. And he had a very dry sense of humor. And so I would find ways to make him laugh. And when he would laugh, I would laugh.
What they say about laughter being infectious is very true. As far as me being able to laugh outside of being around them. That was very difficult. I won’t mislead you. They weigh on your mind 24/7. And so yes, laughter was important, I would agree. But I don’t remember really having a lot of those types of moments. My moments of joy, were spending time with my mom and doing something that was fun to do together,
You offer some really handy tools on your website. Will you please share a bit about those?
So I built the website before I wrote the book. And so on the website, there are facts and figures, you know, if you know, basically anything you’d want to know. Tools so that you can use them as communications tools and tracking tools for care.
And when you look for a memory care community, for instance, the blogs are all about, you know, part of our journey and what we learned as well as my specific story. And we just made sure that I had everything on there as well as, of course, the way to order the book. And there’s a way to just click a button and reach me. So Working with Pam is the button. And if you want a 30 minute consult, you can do that. But it really is a tool that’s meant to help families especially at the earliest stages of this journey.
What would you say is the first and foremost message of It’s Not That Simple that you want readers to grasp.
I would say that every moment matters. And that this disease is not something fast; you’re in it for the long haul. So being upset and angry and frustrated is a waste of energy. Having a plan helps you not feel regret, not feel guilt. But instead realize that every day is going to be different and that there are moments of joy even though this disease is affecting your loved one.
Boy, that makes a lot of sense. So now I get to ask Will you please read a short excerpt from it’s not that simple for us?
Sure, I’d be happy to. One of the emotions that happens frequently is this fear concept that I mentioned. There’s a fear that the next time you or one of your care team visit your loved one will not know you. It’s a deep seated fear that may or may not come to fruition. Their recognition can even change from week to week. The future of their relationship is unknown. And that’s a pretty scary feeling.
Yet during this time, your family and close friends are the ones that understand the most about what’s happening. support each other. That’s what your loved one would want not arguments and separation in defensive Family members, the frustration with a loved one is rooted in the fear that they’re disappearing and no longer functioning in their previous role, which in many cases is as a spouse or parent. Yes, that’s a tough pill to swallow. But for the sake of your loved one, never, ever argue or get upset anywhere near them. memory care patients remember emotions, they may not remember the days of the week or the season of the year, but they’ll remember you left angry, and there’ll be sad bores, they’ll hold on to that sadness, because somewhere in their hearts, they sense they failed you.
So where does our fear come from? I believe it comes from feeling powerless, unable to change the outcome of an event, or unable to understand the full scope of the situation, and the possibilities this disease brings with it. During every visit with mom, I’d look into her eyes and ask myself, is she still in there somewhere? My fear was that my mother was locked in a body that couldn’t communicate. So I’d watch her closely for all the nuances of our decades of interactions, the smile, the squeezing of my hand, the padding of my face, and hugs, yes, she was still in there.
Oh my gosh. That kind of brought tears to my eyes just thinking about that. So I know we talked about your website. But I want to reiterate again, where can we learn more about you? And where can we purchase It’s Not That Simple?
Well, the website is called ItsNotThatSimple.com. If you go to that homepage, on the right hand side, you’ll see Book. If you click on Book, that’s where you can order the book. And of course, explore the website for additional tools as well.
We’ve been talking with Pam Ostrowski, author of It’s Not That Simple. Pam, thank you so much for taking time to share your very important message with us today. I can only imagine how this journey affects those directly involved with it and my heart goes out to every one of them. If you decide to publish another book, will you please come back and chat with us again?
Oh, I would love that. Thank you so much, Linda.
Here’s part of a review I found for Pam’s book. “This is a well written and insightful look into the author’s struggles and successes with their own family. It’s easy to read and understand from a lay person’s outlook, a must read for all going through their own struggles of caregiving for a loved one with dementia.” So if you or anyone you know is struggling with this dreaded disease, and want a good resource, please go to ItsNotThatSimple.com and order your copy today. And when you finish, please don’t forget to post your review and share this interview with your friends so that they too may become acquainted with the author. And remember, The Author’s Show may be accessed at any time at theauthorsshow.com. Plus selected interviews can also be found on major platforms such as Amazon, Fire TV, the Roku, channel, Spotify, Amazon, music, and many more. Whether you’re an author who would like to be featured or we are in search of new books, theauthorsshow.com is a really great place to start.
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