Pam Ostrowski 10/28/25

 Selma:  Thank you, Pam, for being with us to share your care story today. We'll start by having you briefly walk us through your caregiver journey.

Pam:  That sounds wonderful. I had a conversation with someone who described caregiving in the way that I experienced it, but I'd never really thought of it. She said, “You don't walk into your parents' home and go, I'm a caregiver. You walk in and say, Here, let me help you with that.” And then next week, let me help you with this and that. And then the next week or the next month, it's like, ' Let me take you to your doctor's appointment. ‘ And it snowballs. It just kind of sneaks into your life. And I said, It's that whole, how do you cook a frog? You just turn up the temperature one degree at a time. And so that kind of happened with me because I really started my caregiving journey in the early nineties. I was working for Hewlett-Packard, and my dad had knee surgery, knee replacement surgeries for both knees. And my mom wasn't comfortable driving anymore because he had been doing all the driving, which is very typical. As you get older and you retire, you go down to one car. And in a way, I think that's one of the things that causes or can contribute to the cognitive impairment that we're experiencing in our communities these days as we age. We're taking away responsibility for convenience’s sake, maybe for financial reasons.

So my story was really about me noticing anxiety in my mom that was never really there before. I knew I had to move them out to Phoenix. They were in New Hampshire because I was in New Hampshire for 14 years… I got mom to talk dad into moving to Phoenix … I found a place here for them. And that's when I started to watch my mom's cognitive impairment increase, her inability to do activities of daily living. My dad was doing the “see no evil, hear no evil, say no evil,” don't say anything. Finally, I said, you aren’t able to care for her, not because you can't, because… she wasn't going to let him.

 One of the things we don't tend to look at is when we want to help, even as an adult daughter who was very close with my mom, she didn't want me as her daughter to be doing things for her. I'm her daughter, not her caregiver. And it's even more accentuated in the spousal relationship. If you think about it, in any relationship, romantic or partnership that you have, you don't let that other person tell you what to do. Don't you tell me to take medication. Don't you tell me what to eat. Don't you tell me how much to drink. And so it became more of a butting of the heads. And I said, I don't think this is resolvable because she's evolving into a person who doesn't have reasoning capabilities…. The number one thing she always said to me was, I never want someone else to take care of me. I never want to go into one of those places. Now, one of those places happens to be like a docked luxury cruise liner with grand pianos and luxurious meals with tablecloths and everything.

 It's a beautiful place, but she's not independent. And I think that the hardest thing for us caregivers to observe is to watch this person go from being assertive and conversational and engaged to slowly stepping away from that engagement and being more socially reclusive and really evolving into a different person. She was still sweet as can be… and all the professional caregivers loved her, but she couldn't express anything. Imagine you wake up in the morning and your stomach's upset. What are you going to do? You can't tell anybody because you can't find the words. You can't get up and go to the bathroom. So to be trapped for so long, it still, to this day, brings tears to my eyes.

Selma: How do you see Alzheimer's care different from caregiving in general?

Pam:  To clarify, dementia is the umbrella term… It's a condition, it's not a disease… Alzheimer's is the primary diagnosis. It's about 60, 70 % of those dementias out there, but there are over a hundred types of dementia. When you're dealing with dementia caregiving, it's kind of like what I alluded to earlier in that you're watching someone evolve. The one thing I want to emphasize is that they're not disappearing. They're still in there. They still have that will, that strength, that core person that they are, but they're losing the ability to find the right words. They're losing the ability to know how to tie their shoes. That doesn't make them stupid or incapable. It just means that they can't connect the dots anymore. So as a result, you have to show, don't tell. And it's a much more engaged caregiving because you can't just say, Hey, we've got a doctor's appointment at 10 o'clock. Let's go. They won't know what to do with that information…

And so as a dementia caregiver, you're having to communicate in a very different way. And most of my webinars, a good part of my book, and a lot of my publications talk about word choice and saying something louder, which is what most people do. They repeat the same words louder…. that's not going to help. It's just going to exacerbate things. It's going to frustrate you both. Change up the words. So, it requires creativity on the caregiver's part and huge amounts of patience. You're going to be asked the same question multiple times. Again, something that doesn't happen in non-dementia caregiving. And you have to learn how to cope with that. And sometimes that might mean leaving the room. Other times, it might be writing the answer down if they can still read. So there are a lot of options, but it requires a vast skill set.

It is not the type of caregiving that you can say as a type A controlling female, I'm raising my hand, that I've got this. Doesn't matter what it is, I've got it. And there are a lot of very strong women out there who are falling into this caregiver role and are absolutely falling to pieces because they don't know what to do. I mean, it tugs and pulls on everything. And then, you know, you're working. So you have to bring your best to that as well. And there's only so long you can sustain that level of excellence across your entire life, including your relationships with either your spouse or partner and your children, and your friends. It takes you and spreads you very, very, very thin.

Zack:  I listened to the podcast you sent us. What's your plan by Noah Evans? In that episode, you mentioned you're an entrepreneur.

Pam:  Yes, my company is 28 years old. I was in corporate in the beginning, but it's just as tough for entrepreneurs as it is working for an employer, in my opinion. I would say it's much worse…. I worked for Corporate America for about 15 years and then started my own company. And I started it because it gave me flexibility to pick my clients and who I worked with, and what I worked on. I worked with high-tech Fortune 1000 companies and did a lot of advisory councils with the C-suite and their top resellers. And in that whole process, I became exposed to how they view the world.

And so as a caregiver, I would step back and go, there's no way I could do this and still work for you -- the corporate entity. Because it would have been impossible with the structure back in the ‘90’s and 2000’s. And it feels like it's creeping back in now after COVID -- the inflexible schedules, the accountability, the lack of trust, all of those things that are happening that require us to be there. You punch a card at 8:30 and you punch the card at 4:30 or 5:00, and then you go home and you work more, right? Because you didn't get it all done because you had meetings that day. So, just the corporate environment didn't provide the flexibility that I really appreciated as an entrepreneur. I could easily say to a client, I can't make a two o'clock meeting. I already have an appointment. It happens to be a doctor's appointment with my parents, but that's none of their business. What is it you need from me by tomorrow morning? And then I can manage that. And it gives me that flexibility, which I think is… the conversation we need to have with the C-suite -- how do we introduce more flexibility into the caregiver employee relationship? Because right now we don't see that very often.

Zack:  I like the way you position that. “I couldn't work for you.” Love that. Can you give a couple of tips for entrepreneurs? Because even though there's flexibility, there's still quite a lot of challenges, right?

Pam:  If you're an entrepreneur, you have to be very skilled in scheduling and allocating your time. So the good news, because you've got to be the marketer, you've got to be the salesperson, you've got to be the implementer, you've got to be the customer service and support person. So you've got so many different roles, but you also have to allocate time too. Good entrepreneurs, successful entrepreneurs have to know how to manage their time… So with my parents, I knew that we would never do anything before 11:30 a.m. because that's about the time they got dressed and ready to go for the day. And I knew that by four o'clock they needed to be at whatever buffet place they were going for dinner. So I had a window of their time and then my time…. One thing that I will say is that the difficult thing about this is that you really don't have as much control as you would like. Entrepreneurs tend to be people who are planners. You can throw that out the window when it comes to dementia caregiving, because you don't know what's going to happen.

So, you have to be flexible. You've got to be able to stand your ground and have boundaries, I guess is what I'm really saying. Because boundaries determine everything, like how you have with clients? I know entrepreneurs that have none. A client will call at 10 p.m. and say, I need this report. No, I'm not going to answer the phone. And I'm going to have my coffee in the morning before I return that call because without those boundaries, you can just end up in a huge health issue where you're stressed all the time. You're going to have issues with your disease and other elements of stress, your relationships are going to suffer. And so it really comes down to what are your boundaries in caregiving? And everybody's boundaries are different. There's no right or wrong to where your boundaries are. Everybody has a different capacity and capability, and you need to pay attention to what yours is.

Selma:  In addition to flexibility, which you mentioned already, what tips can you give employers in terms of being more supportive of their caregivers?

Pam:  So that's an interesting conundrum that I've been working on for a few years now. When I spoke at the SHRM event… a couple of years ago, I had a session that was about, “What's mom doing while you're away, while you're working?” I asked the question, “How many people are caregivers?” And about half the room raised their hands. And I said, Well, so how are you coping with it? And they're like, Well, we just go to work and we do our work and then we go home…. So the thing that employers can do is that flexibility is key. Measure key performance indicators, KPIs, for your corporate folks. If I do my job, you shouldn't care when I do it. As long as I meet my deadlines, as long as I'm in communication with my team members, if that's a requirement of my job… But what are the policies? What's the wording for these companies to implement and communicate?... People like us need to go into the C-suite and be able to say, Hey, here's the wording. Here's how we implement this…. I think that's my take on where we need to bring the caregiver and the corporate entities together.

Zack:  Your book, It's Not That Simple. I confess I haven't read it yet, but I listened to you talk about it on the podcast. You talked about conversation starters.  Can you tell us a little bit about why you wrote this book, what conversation starters are, and how a working caregiver can benefit from reading your book?

Pam:  Thank you for that question. So it's not that simple. It was something I actually said when someone said, “Well, why can't your father just take her to the doctor's appointment and then you can go do this?” And I said, it's not that simple. And I found myself saying, It's not that simple so many times I'm like, That's the name of the book! The reason why I wrote it is that back in the early 2000s, or even before 2010, there weren't many resources…. I actually befriended doctors and nurses and care community directors to learn more about techniques and ways to communicate. And then I also developed my own, simply because that's part of what I do with my mom. That's kind of how the book evolved and the conversation starters.

So this, again, from writing the book, it turned out my content editor said, Look, I'll be honest with you, I'm going through this with my mom, and I don't know how to start the conversation with my brother. And she said, Do you think that you could write out the actual words? … And I said, all right, so I actually wrote in quotations, ‘Here's how you start the conversation. Here are the words you can use.’ Because it's an uncomfortable conversation to talk about someone's mind and their capacity. It's different to talk about an arm and a leg or a condition, but to say, Mom can't take care of herself…

 And then also really focused on things that information I couldn't find and admitting the vulnerability that comes with caregiving. And caregiving for someone who's evolving and whose cognitive impairment is increasing, whose capability is decreasing. Someone that you deeply love. The idea isn't to sit in sadness. The idea is to help them on this journey as much as you possibly can with as much kindness and compassion as you can. And if you can't do that because you're worn out, then step away for a bit. There's nothing wrong with doing respite care in a care community. They get lots of stimulation that way. Or bring in help from in-home care… And ultimately, the education that it's okay not to be perfect. That letting go of control and saying, okay, what's the best that I can do? That is what the book is about.

Selma: It sounds like you just answered a question that Zach and I like to ask our guests. Looking back over your journey, what advice would you give yourself just starting?

Pam:  Let go of the control. Let go of the need to control the outcome. Brene Brown says, and I'm going to paraphrase, that the most courageous thing you can do is be vulnerable. Caregiving requires you to step back and go, I really don't know everything. I really can't control the outcome of everything. And letting go of that outcome and just staying in the moment. If someone had grabbed me by the shoulders back in 2004, 2006, and said, “Understand this one thing,” I probably wouldn't have made the mistakes that I feel I made. I think it has to do with how we get upset as caregivers. We get frustrated, we get sad, we get irritated. And we need a framework to put those emotions into and say, It's okay that you feel all those things. However, you own that. You own feeling guilty. You own feeling sad. They don't know. They're going to wake up every morning, and my mom was happy every single morning. She didn't remember yesterday, and she didn't care about tomorrow…. So, I think that's really important for caregivers to realize that for this to be a positive experience, we have to own our reactions. We have to own whether we approach this positively, or with fear, or with angst, or with guilt… So that's what I would give my past self advice on.

Selma:  Pam, how can people connect with you, and how can they get your book?

Pam:  Every electronic bookstore has it. Amazon has it, barnesandnoble.com has it. You can search for It's Not That Simple. You can get away with that. Or, It's Not That Simple: Helping Families Navigate the Alzheimer's Journey, or just type in Pamela Ostrowski, and you should see the book too. Probably the easiest way to see if you want to talk to me further is to go to my website: Alzheimer’sfamilyconsulting.com... And I'm on LinkedIn and Facebook and all of those things as well. And on YouTube, if you look up dementia care support, my YouTube channel should be there. There are lots of webinars on there.

Selma and Zack:  Thank you for your time. We appreciate it.