Deborah Bakti: 0:02

To really help families who are either considering or needing to move a loved one into long-term care, as well as working with the care providers, because there’s this huge gap, a knowledge gap and emotion gap that happens.

Rayna Neises: 0:17

That’s our guest today, Deborah Bakti on A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host, and I’m excited to introduce you to Deborah. Deborah is a speaker, veteran executive in care, founder and president of the consulting firm Think Breakthrough Inc, and author of her latest book. Now What?: Managing the Emotional of Long-term Care for Families. expose a our realities and that turn a merciless journey into one that’s meaningful and manageable for everyone. From her experience on both sides of senior care, working in the industry and being a family member three times her dad, mom, and husband. on a mission to shift senior care a transactional to a more relational experience care team members, and families. Her first book Recipe for Empathy: Six Strategies to Transform Your Families into Fans and her second book, Now What? are foundational resources for workshops and training in this relational transformation. Deb’s the proud mom of Taylor, Logan, and lives in Burlington, Ontario, Canada. Thanks Deb, for being here today, I’m really excited to have this conversation with you and our audience. I’m excited to be able to hear your wisdom.

Deborah Bakti: 1:36

Oh it’s such an honor to be here with you today, Rayna.

Rayna Neises: 1:39

I know in your bio, you said three different experiences of needing to get that support of a care facility your loved ones. a little bit about that with us, because obviously that’s made a big difference on what your message is and how you’re passionate about helping us to transform that relationship.

Deborah Bakti: 1:59

Yes. Well, my first experience was with my dad. He had been diagnosed with Parkinson’s and Lewy Body Dementia, and my mum was really struggling to take care of him at home because years previously, he made my mom promise to never put him in old folks home. And it got to the point with numerous falls and trips to emergency. That it was clear that my dad needed the support of a long-term care home. So I was working in the senior’s care industry at the time at an executive level, and I had a pretty good handle on the workings of the business. So I helped my mom with navigating and getting him onto a wait list and whatnot. And he ended up living in a long-term care home for the last six months of his life before he passed away in 2011. And while that was going on, my husband in his early sixties started having some really weird symptoms and it took us about a year and a half to get a diagnosis of an extremely rare disease that only 400 people in the world had,

Rayna Neises: 3:01

wow.

Deborah Bakti: 3:01

the disease is called Aridyne Chester, and it was degenerative and there was no cure. And so, we had home care. Our kids were 11 and 17 at the time that he was diagnosed and adult daycare. And it just became apparent that I could not safely or effectively take care of him at home with the kids. And I was still working full time. Because of the age and stage that we were at. And he was put on the crisis list. And then in 2011, he became a resident, and I became a resident’s wife. My husband lived in long-term care for four years before passing away in 2015. And I was also on the journey of helping my mom. Move into independent living retirement. And then we started seeing symptoms and signs of some decline missing medications that sort of thing. So we ended up moving her into assisted living and she lived in assisted living was diagnosed with frontal temporal dementia. And she passed away in 2018. So, during all of this time, I’m working in seniors care, and it was really the experience with my husband and becoming a resident’s wife that really compelled me to retire and leave my corporate career and start the business that I’m in now. Which is to really help families who are either considering or needing to move a loved one into long-term care, as well as working with the care providers, because there’s this huge gap, a knowledge gap and emotion gap that happens. And what I experienced, and I write about in the book with Ty’s admission day. Was, it felt incredibly transactional and no hard feelings on the staff. They are overworked and super busy and they’re trying to basically fit a new admission into an already busy day. And so a lot of the education I provide is around understanding that this is a significant life-changing moment. This is probably one of the worst days that this family is experiencing. And it needs to be relational and not transactional. And how you start that relationship with that family, who is your customer, who can be your partner and care, is going to really determine the, the, the value, the quality of that relationship, which all leads to the care and quality of life for the resident, for their loved one.

Rayna Neises: 5:42

Wow. I’m so sorry for your losses. So difficult in such a compact period of time. It had to have been so difficult, and so I’m just sorry, that that was your experience. I’m thankful that you’re finding ways to help others who are in that experience, like you. said, I think beginning can be so impactful, and just helping all of us shift a little bit of our expectations can make such a big difference. And that’s what I’m excited to be able to share more from your book of how to do that and what to think about and really how to help us be able to take that difficult step in a little more successful way, maybe. So obviously, the process of that admission. as the wife was very impactful and inspired this book. So, tell us a little bit more about what all’s in the book.

Deborah Bakti: 6:42

The book Now What? I really wrote with the family member in mind, while also being able to appreciate that this would be a wonderful tool for homes to have to give to their new family members as part of the onboarding process.

Rayna Neises: 6:59

Hm.

Deborah Bakti: 6:59

And when I worked in corporate, I worked in operations as well as human resources. And most organizations have an employee relations strategy, but what homes don’t typically have is a family relations strategy. So, I think those having lived both sides. So even when I became a family member and I worked in seniors care and I had so many more contacts than the average person, there were still things that knocked me sideways and surprised me. And when I talk to people outside of the industry, a lot of times people have never even stepped foot into a long-term care home. And there’s still a lot of stigmas and I’m going to say misperceptions about it. So, the book I share my admission day experience and why I felt that this was so important to share and how there tends to be this knowledge gap on both sides. And what happens on admission day is that there’s actually, I call it admission anxiety, so we can probably appreciate the anxiety that families face. With that gut-wrenching. I can’t believe it’s come to this. What is my life going to look like? How are they going to take care of my loved one, all of that, the questions and the uncertainty and the grief and the guilt that they feel. What may be surprising to families is that the care team also feels admission, anxiety. They get a file. And so, they get so much information about the resident. And I would say most, if not all homes are very equipped to be able to deal with all of the different health complexities that a resident is coming in with. What they don’t know is what the family is going to be like. And the anxiety tends to come from, are they going to be easy to work with? Are they going to be challenging? Are they going to be difficult? And in using those labels and families that I’ve talked to, that would say, yep. And I can say myself, I definitely had my moments of being a difficult family. And one of the chapters, I talk about family flavors, and I lovingly call that the jalapeno family. And so to be able to create some awareness around what do you think those misconceptions or assumptions or beliefs that the family’s coming in with, and rather than just be reactive and defensive about it, how can you help to close that knowledge and emotion gap and understand where the family’s coming from. What’s their story for me, we had 18 months and 27 different specialists through five different hospitals that we were transacted through just to get a diagnosis? By the time I showed up at the doorstop admitting my husband like a lot of your listeners are probably just at your wits end. You are tired, fatigued, worn outside all of the conflict of emotions that you’re feeling. And the last thing you want to do is feel like you’re being transacted with again. In the place where your loved one is likely going to live until they die. And these are people that you really need and want to build a relationship with. So clarifying all of that upfront. A lot of times the staff don’t have the time admission day has already a three-hour process of paperwork and approvals and medication reconciliation and all of those things. So I wanted to share a bit about the emotional journey that families may be feeling. And I use a framework called the seven a’s starting with just the awareness of what you’re feeling and what you may be anticipating through to acknowledgement and acceptance and even appreciation. And I share some funny stories. In a very unfunny kind of time that I was able to glean the appreciation for the support and the help in this relationship that neither my husband or I even really wanted. Right. It’s never an option that we want to have, but it’s a valued support and resource. Another section of the book, I share 20 different misconceptions that people have about long-term care, basic ones. Like I thought my loved one would get 24, 7 one-on-one care, to how do they lose laundry? You know? Which I know sounds like a really basic thing, but, or frustration with a lack of parking or how was my role? How does my role POA work with the staff? And so there’s a number of different things that I find if we can front end load, so to speak the families with knowledge and insight that they’re not going to get off of a website, but I’ve learned through trial and error, other families uncovering what are those things that families end up feeling very disappointed and frustrated and lose it over to compile those so that I can give that insight to families upfront. And if they have further conversations or questions about it, they can go to the care team or the people that they’re working with or whatever their local community support is. So, it’s a combination of practical knowledge and insight, as well as challenging the families to think about emotionally, how they are coping or not coping. And the little G big G grief. ’cause sometimes I think, and it wasn’t until I worked with my therapist, that she helped me understand that I was grieving, even though my husband was still alive.

Rayna Neises: 12:39

We talked about that a lot here on the podcast because I do think it is significantly overlooked. The fact that grief is a part of our everyday life. And part of that comes from expectations that we would never be where we are with our loved ones. And part of it just comes with the fact that this is normal life. We don’t expect it. We don’t think that it’s going to be this way. But aging is difficult and that journey of walking our loved one all the way home is harder than we ever imagined it with.

Deborah Bakti: 13:09

Yeah.

Rayna Neises: 13:09

And I don’t know that we can be prepared, but I do feel like understanding and doing the research ahead of time can help with those expectations. So, the grief is always going to be a part of it, it doesn’t have to overwhelm us or put us in a place of being the jalapeno family, you know really acting in a way that isn’t in congruence with our values. And sometimes I think that happens for families.

Deborah Bakti: 13:36

Well, and I think understanding and using some humor with it that sometimes when we go jalapeno it’s because we have this unresolved grief, which turns into anger and frustration and a big part of it too, particularly when moving a loved one into long-term care. There’s a sense of giving up control and you know, for you Rayna with taking care of your mum and dad at home, maybe there were some days where you wish that you didn’t have all the control. Right? But you had things running the way that you knew best. Now, all of a sudden, you’re handing somebody off that doesn’t know your loved one and you’re needing to trust them. And. It’s hugely hard. And that’s where it’s a two-way street, both sides, both sides have. And know what the other side doesn’t, I knew all of the ins and outs and idiosyncrasies and likes and dislikes of my husband, but I didn’t know much about the workings of the home. They were holding all the cards and knowing the policies, processes, protocols, people, all the pieces of the business, but they didn’t know anything about my husband. So, we had to have this partner in care relationship, where we were open to and wanting to share, to empower each other. And sometimes families find it hard. There’s family secrets and. there’s Dysfunction, cause what family doesn’t have dysfunction. And so there’s some embarrassment or shame around sharing those things. I could probably guarantee that homes have seen it all, and there’s not much that can surprise them in that. And what they really are driven by is that wanting to be a partner in care and bringing that dignity to them. And I also think when we’re meeting families and I say this to my clients, you’re not just meeting the family, you’re meeting their grief. And that requires empathy. You’ve got a busy day and you’ve got another admission and you want to get that processed. And the person moved in. Remember, this is the one of the hardest days of their life and how you may be seeing some of their resistance or their behaviors that may be coming out through words and action. It’s probably driven by their grief and the loss that they’re feeling. And sometimes they don’t even know that it, like we just said before that it’s grieving that they’re experiencing.

Rayna Neises: 15:57

I think that there’s been so much that families have gone through to reach the point where they’re finally at a point where they’re saying, I can’t do this anymore. I need help. And I want you to be the one that helps me. what we’re seeing it as. I can definitely see where the structure and the processes that need to happen to keep home going. That’s not other radar necessarily, like you said, it’s a file with facts and information, but that doesn’t tell all that’s happened to get to that place.

Deborah Bakti: 16:33

Yeah. When I do work with clients and help them to redesign the admission process, because they’ve pretty well been doing it the same way, some have said for the last 30 years. We know that it’s not ideal, but there’s so many other priorities. Just from a process standpoint, there’s over a hundred steps that are involved at that home need to implement. So those, a lot of things have happened before the family moves their loved one in, and a lot of times. I mean when I was sitting there with my husband’s admission day and the team was running in late and they were out of breath and I, you know, all of these things that I felt were just not ideal. I understood the business, but it never occurred to me in that moment that this team just lost a resident that they probably grew to really love and care for within the last 72 hours. And when I reflected on that, it helped me to have some empathy for them, but I was sitting there and all I was looking for was empathy from them. I look back and say, well, I completely understand that and with, with, with where I was, and my husband was at the moment, but I could have also done some other things to invest in the relational bank account that I was expecting them to be making all the investments and, you know, so to open up that conversation Acknowledging we are in a partnership we didn’t really want to have with you, but we have to, because this unexpected crisis happened in our personal life that is really making us sad and resisting the whole thing, but we have to make the best of it. And that takes a mindset shift. Right?

Rayna Neises: 18:09

That’s for sure. And making the best of it when your reserves are so extinguished, is such a difficult thing to do. again, I think that the point is such a good point and that there’s humanness on both sides. that’s why it is a relationship that creating it’s not a transaction that you’re doing. It’s the relationship. And when we approach people the desire to create a relationship, get a different result, both directions. So

Deborah Bakti: 18:40

So well sad. Yeah.

Rayna Neises: 18:44

What would you say is the biggest challenge caregivers deal with when they’re making that decision? That moment when they’re having to do that, I know you’ve said grief. Would you say that’s the primary challenge?

Deborah Bakti: 18:56

I think grief and guilt go hand in hand.

Rayna Neises: 18:59

I agree.

Deborah Bakti: 19:01

Whether it’s like my dad making my mom promise a promise that she couldn’t fulfill, which ended up impacting her health. And I think contributed to all of the challenges that she was dealing with in assisted living. So, part of it’s that, part of it is the guilt of feeling or other people’s wondering, why can’t you take care of them yourself? That’s not how we should be treating our parents or, you know, for me, I, you know, I was in my late forties, early fifties, and my husband in his early sixties, people kind of looking at me like really? Like he doesn’t belong there. So, dealing with some of the judgment that other people have and being able to rely on the people that are important to you for support or professional therapeutic support, that was hugely helpful for me. And being able to understand. But it wasn’t just for me and the kids, but also would be in the best interest of Ty being in a home where all of his needs could be better-taken care of. I think part of it too, is when those decisions are made, there is a relief that shows up, and then we bounced back to feeling guilty about feeling relieved about having help and being able to. I think sometimes the persona of caregivers is we can be martyrs. We can put other people ahead of ourselves and figure, well, one day when then I’ll take a holiday or go on a cruise or go to the spa or whatever those things are. And sometimes we don’t recognize that we’re slowly chipping away at our own health, both our mental health and our physical health and. It’s sometimes can be hard for us to accept that if we can take better care of ourselves, we will be in a better position to take care of them. I think some of the keys is really being educated, as best as you can with what is long-term care, what are the options? And I understand there’s all sorts of different decision criteria from a financial logistical location-wise. But if you’re able to do the research that you can and understand there will be pros and cons. And to also understand what is it that you’re currently experiencing or enduring in the caring at home that if the condition progresses is going to continue to wear on you and what are the risks involved in that? And also, being able to appreciate that it’s not moving into a five-star hotel, and it can be suboptimal to what your expectations are. And part of the training that I do with homes is to really clarify, manage, and adjust expectations of families coming in. Sometimes they don’t want to tell you what you don’t want to hear, but it’s important to know that there may be some things like. For example, if they have set mealtimes, but they want their loved one to be able to go in and graze right, with snacks and things like that. But if that is not possible and, and I don’t know, I mean, every home varies to understand, is that a deal-breaker or is that something that we can work with and maybe come up with some alternative solutions? One of the things that may be surprising is that if your loved one is used to having a bath or shower every day, that may not be possible in a home facility environment. So really understanding how important or relevant those types of things are but understanding that upfront.,

Rayna Neises: 22:39

I agree. I think there are so many things that we individualized to our needs and in a family, I don’t know about you, but as a family, this is how we’ve always done things. And so we kind of don’t even realize that anybody else does it differently? I know when we brought caregivers into our home, of my dad’s breakfast meals was rice and, generationally, he ate boiled rice with raisins and sugar and milk on it and that was like a cereal. And our younger caregivers are like, he has one. Now, what am I supposed to do? They literally had no idea. So, there’s so many things like that we don’t realize that it’s just our personal preference or the way that our family rituals go. And that when we go into a setting like long-term care that’s not going to be something they can accommodate necessarily. So, understanding and being really specific and asking those things that are most important and finding a way to either accept that it’s not an option or to make it happen. think one of the things that I love about your book is I’m always telling people that learning and studying now when you’re not in crisis is going to make such a big difference. And by the time you reach the point in which you’re needing to go through this process, you’re in crisis. Your emotions are on high. Your exhaustion level is high. There’s a lot going into the decision and making it happen. So now is the perfect, to pick up the book and to learn the myths and to understand more about what it’s going to be like that you can locations near you with new eyes and understanding better questions, and really be able to be prepared the more prepared we are. The easier it’s going to be. There’s not going to be an easy side of this process probably, but it can be more comfortable. And so, I love that you have created this resource allow us to really think about it. And hopefully, before that first day to really be prepared and have the conversations with our loved ones and understand their wishes. Get a good going around what’s realistic. Because what we wish for sometimes just isn’t realistic.

Deborah Bakti: 25:05

Yeah. And having that ability to prepare, to prepare the logistics and the emotional side of it. And just to be aware, I mean, there’s a huge right now with aging parents. And it’s hard when we’ve seen our parents as the ones who have taken care of us and that role reversal, which you and I both know very well. And sometimes we see things that we would choose not to have to see or deal with, or we just ignore and then it kinda comes back and bites us. So, it’s a difficult journey for anyone having to go through this. And so, I think we both are motivated by providing the resources we can with our own personal and professional experiences to make it a little bit easier or more manageable for people behind us.

Rayna Neises: 25:50

Absolutely. So, us where we can get Now What?

Deborah Bakti: 25:54

It’s available on Amazon, which is probably the easiest way to get it. And my website, www.DeborahBakt.com there’s information on there as well.

Rayna Neises: 26:03

Great. So, listeners, I definitely recommend that you visit www.DebroahBakti.com and be sure to look at her different resources as well as pick up Now What? that you can be prepared for these that are most likely coming your way. thank you again for being our guest. I feel like we’ve learned so much and I’m really excited to be able to share the resource with our listeners.

Deborah Bakti: 26:26

Oh, thanks. Rayna, my pleasure.

Rayna Neises: 26:29

Just a reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, legal, or financial questions, consult your local professionals, and take heart in your season of caring.