Rayna Neises[00:00:00] Hi, I am Rayna Neises, your host of A Season of Caring Podcast where we share stories of hope for family caregivers pushing past the busyness and loneliness of caregiving To see God even in this season Today, I’m excited to introduce you to our guest. Rick Henkin, Rick is a husband, father, grandfather of six granddaughters, caregiver, and friends.

Rayna Neises: He’s the creator of a caregiver mastery course to help family caregivers reach their heaven islands and eliminate their stress, anger, resentment, and guilt. Rick, I’m really glad to have you here today. Thank you for joining us.

Rick Henkin: Oh, thank you for having me. I really appreciate the opportunity.

Rayna Neises: So tell us a little bit about your caregiving and what that looks like for you.

Rick Henkin: Well, my wife Sonia, was diagnosed with Alzheimer’s in January of 2020 at the age of 65. The way it started in the fall [00:01:00] of 2019, she had no, attention span. We’d be watching tv, she’d be up and down. I was like Sonia wait for the commercial. I paused stuff ’cause I wanted to share it with her, but she couldn’t wait for the commercial. That was an issue.

And I had decided at some point that I wanted her to see somebody, but I didn’t want to take her to a primary care physician. I wanted to take her to a specialist. And my hope was that they decide that, well, she just needs to have her antidepressants, changed. So I did some research online. I found the Pacific Neuroscience Institute out here in Santa Monica. They have a national reputation. I took her there. it’s funny. She on the way there, she goes, why? Why? Why are we having this appointment? I just wanna make sure everything’s okay. She said, you need the appointment. I don’t need the appointment. Something’s wrong with you. She’s just being defensive about it. Anyway, we got there and the doctor gave her a series of tests, uh, that, checked different parts of the brain, and finally she came to the clock test, what it [00:02:00] is the doctor will ask the person to draw a circle like a clock, put in the numbers of the clock, and then ask them to draw the hands of a clock showing a certain time. So Sonia had no problem with the circle. She had no problem with the numbers. She was asked to draw the hand showing 10 to 11, she couldn’t do it. She just sat there staring at the page, literally five minutes until she started to cry. I started to cry and then she realized she had a problem. And what the doctor said while she has mild cognitive impairment at that point. They have to do several different kinds of tests to determine what type of dementia it was. So they sent her for, multiple CAT scans, and finally in January of 2020. She did an amyloid PET scan and they diagnosed her with Alzheimer’s. And, at that point I could take care of her. She was still at home, although she’d go out, she walked to the [00:03:00] market one time. She tried to pay for the groceries at the market with her target card, and, you know, little things like that. I decided I had a caregiver at that point to help because I was doing stuff and she’d take her to just a senior center and they’d hang out together. That lasted for just a couple of months. Soya developed what’s called Capgras Syndrome, an irrational belief that the person whose face she recognizes me is an imposter, and you can’t shake that belief. Pictures don’t matter. Other people telling her, no, no, that’s your husband, doesn’t matter. And we’d be sitting there on the sofa and she’d look at me and ask me, where do you live? are you doing here? I want you outta here. Or I’m gonna go call the police. Then she’d go next door and tell the neighbors about the strange man in her house. I take a walk for about a half hour. I’d come back to find her crying, wondering where I’d been.

She had no recollection of what took place. So I [00:04:00] found a daycare out here, and again, I’m not in Santa Monica in Los Angeles, but in Santa Monica that focus on people with dementia. And I take her there every morning. was doing really well. They would, she would help set up the events, break down the events. They all loved her, but when she got home, never knew what I was gonna get. It was a different story.

We live in a duplex. My son and two of our granddaughters live upstairs, and every night she’d go upstairs and just bang on the door 15, 20 times the point where they stopped answering the door. She was scaring the granddaughters, these were granddaughters. Sonia used to be their best friend. She’d be on the floor playing with him, dress up makeup. I mean, she just loved him. I, I always wondered where she got that energy. And she became the, the mean grandma. And I, I, you know, I didn’t know what to do at that point. And one day my son calls me [00:05:00] upstairs, and he says, I wanna tell you about this new job I’m interviewing for. Okay, cool. And then he tells me it’s an Ashland, Oregon. Again. We live Los Angeles. And I, my heart just sunk. I felt like I was being abandoned. Just so everybody knows, he didn’t end up going. And at that point I thought, okay, I didn’t want to do anything with respect to moving Sonia just because it was expedient for me. That’s just didn’t seem right. It seemed disrespectful. I mean, this is my wife.

But I called her neurologist. I called her nurse practitioner and her psychologist and I said, why is it that when she’s at daycare she’s helpful, they all love her and she gets home and you don’t know what you’re gonna get.

And they said it’s because at daycare she has structure and at home it’s the wild west. And they each suggested it was probably time to move Sonia. So with their, I don’t wanna call it blessing, but I decided, okay, if they’re telling me that, then it’s probably right. So I moved Sonia [00:06:00] into a memory care facility. She was there for 22 months until the long-term care insurance ran out, and she’s been home for over a year now. I’m glad she’s home. The Capgras Syndrome is all gone. She’s a different person. She’s much easier. And, you know, I actually feel much more tender towards her. I mean, when, when she was at home, it was anger, it was stress, all of that. I realized that the burden of care, which is a significant medical phenomenon, can take its toll on the caregivers, whether they know it. I read an article on Journal of the American Medical Association that said family caregivers have a 63% higher risk of dying than their peers who aren’t caregivers.

I mean, that’s huge, and you often hear about the caregiver ending up in the hospital long before their loved one. So I was bound and determined not to let that happen to me. I want to live as long as possible. So I thought, okay, this can’t be a [00:07:00] new issue. So I started looking online and a website, after website, I found the same basic information. Find 15 minutes, take a break, exercise, walk, meditate. It’s all good information, but it doesn’t have anything to do with my feelings and my emotions, so I realized I’m gonna have to do this myself. ’cause mine is the only brain that can change. Sonia’s certainly isn’t, and it’s gonna get worse as time goes on. So I worked on myself and worked on myself to change my mindset. ’cause that was the only way for it to work, to look at things differently. And I finally reached what I call my heaven island, which is just a place of peace, acceptance, and clarity, and our relationship improved. And I thought, okay, maybe I can do something to help other people.

Rayna Neises: So I wanted to just kind of comment there I think it’s so important as we’re looking at caregiving, is that adjustments had to be made. I think so many times [00:08:00] when we’re in caregiving seasons. We just want it to be a certain way and expect it to kind of stay that way. Those of us that are in dementia caregiving, we know that it doesn’t stay the same, but I love how you were able to go with it and say, okay, you know, this is working and now this isn’t working.

What else can we do? You know, as far as finding even daycare and then. Once you found that that was still, that was helpful, but it wasn’t fixing your problems, your struggles with your home, that it was like, okay, let’s try something else. But it just because she was in memory care for a period of time didn’t mean that there wasn’t an opportunity and a timing that was right to bring her back home.

I love that you were able to be flexible in that, and I know that each of those decisions weren’t easy and each of those decisions were ones that you weren’t sure. You’re probably making the right decision at the time, but I do think we have a tendency to think, you know, we decide once and then it’s over.

It’s like, actually it’s lots of decisions as we go and, and do the best that [00:09:00] you can and be able to kind of go with the flow a little bit. So, I really am interested in learning what she was experiencing with you, thinking that you were an imposter, that passed. And I’m sure that was a relief to be able to reconnect in a relationship.

Rick Henkin: Absolutely. When she went into daycare, I still had some residual anger, while I visit her on a daily basis. I couldn’t spend more than an hour or two. it was, you know, that change as time went on, I became much more tender towards her. And I will tell you now, and I think I, I mentioned it before and I hope no one hates me for this, but I. While most people, their respite is getting away from their loved one. My respite is seeing Sonia. I look forward to picking her up after daycare. I look forward to the weekends hanging out with her, doing stuff with friends because I can focus on her and take my my mind off of everything else going on. So I do look forward to that.

Rayna Neises: It’s so [00:10:00] important in those relationships to, again, be flexible in the relationship and be able to take on each season and be able to embrace that. And like you said, you’ve done a lot of work on your own mindset, so that’s made a big difference in the way that you’re able to interact with her and. And the stress they feel so many times, they’re kind of a mirror of us, right? When we’re stressed out, their stress rises, and yeah, the opposite’s true too. When we’re calm and we’re able to really engage and be in the moment, then they’re able to match that with us as well.

Rick Henkin: That’s exactly right. They’re still there. They still feel things. They may not be able to express it, know, verbally, but they still feel things. I’m of a belief that even if she doesn’t remember who visited her family member or friend. For those few moments, it still brought her some joy, that’s all we can hope for. And that’s all we can do for her. For any of our loved ones.[00:11:00]

Rayna Neises: Yeah, very true. And the joy in moment, and that has positive repercussions long term with. Our overall psyche, our overall self. That joy has residual effect. And so it is so worth it. And I agree many times people say, well, they don’t even know who you are. What difference does it make? It’s like, it does make a difference.

And, you know, being able to experience that together. Not to mention once they’re gone, the memories that you have are really cherished and they really are important.

So share with us a favorite story of Sonia.

Rick Henkin: Oh, one of the things I tell people, on my, I have a Facebook group, you gotta look for the humor. Not to make fun of our loved ones, but you have to look at the fun, funny things they do that then become cherished memories. A couple of things. I walked in on Sony in the bathroom one day and she’s putting toothpaste in her hair. I looked at her and we both started laughing and I said, why? She didn’t know. My thought [00:12:00] was, well, I don’t know if Toothpaste is a good hair conditioner, but her hair sure smelled minty fresh all day long. Another story we’re, we’re IHOP International House of Pancakes, and we get finished eating, I’m paying, and as we’re walking out, she snatches a pancake off somebody else’s plate. She borrows it

Rayna Neises: Oh my.

Rick Henkin: was very, very nice. Everybody’s been very, very nice. They understand, she’s harmless and they see that there’s an issue. The man said, that’s okay. That’s okay. And I was embarrassed in my haste to get out of the restaurant. I opened the only alarmed door, so the siren is blaring. Everybody’s looking at us. Sonia’s contentedly eating her pancake.

Rayna Neises: Oh my gosh,

Rick Henkin: You have to laugh. I have to laugh.

Rayna Neises: yes.

Rick Henkin: There’s no point in getting upset or getting stressed about it. I hear from a lot of caregivers, my husband or my wife does this or that. It drives me nuts. What if I told you that [00:13:00] the stress or the anger that you’re feeling is not caused by your loved one’s behavior, but by your reaction to it, by your thoughts about it. So you have to change your thoughts. They’re gonna do what they’re gonna do. They’re not doing it to upset you, to push your buttons or anything.

They’re just doing what they do. Again, yours is the only brain that can change. So you have to look at it and everything I do, I look at it from the standpoint of my own health. I still get angry. I get stressed. I feel it. I’m mindful of it as it wells up, and then I stop it before it comes out because it serves no purpose.

It doesn’t help me. It doesn’t help her. When Sonia first came home from memory care, she had to habit going through the entire house and turning on all the water faucets. Now I can explain to her that, Hey, it’s a precious resource that costs money. Is that gonna matter? I could yell at her. Is that gonna matter? It only upsets me. So now when I hear it, I just go turn ’em off. My blood pressure doesn’t [00:14:00] rise. I have no problem with it, and I know she’ll do it, you know, sometime later it’s just, oh, I’m sorry. It’s just the way you have to deal again. To the caregivers listening, yours is the only brain that can change, and there’s nothing that reflects on you. As a caregiver, you can be the best caregiver in the world. The disease is still gonna take them down. There’s nothing you can do about it., An example of two paraplegics. Both in wheelchairs, both with same age auto accident. Why is it that one is be moaning? Their fate. My life is over. Nobody’s gonna love me anymore. The other person’s out playing wheelchair basketball, enjoying himself or herself. It’s all up here. It’s, it’s a choice that you make. And thank God we have that choice in our thoughts.

We don’t have to believe what our thoughts tell us. They’re just thoughts. They’re not facts. That’s something to keep in mind. That’s a good deal of what I [00:15:00] teach in my course. It is all about changing your mindset and, and just so you know, I’m a caregiver too. I did not create this course to be some giant time consuming program. I didn’t create it to add more to anyone’s plate. I created to list of the weight off people’s shoulders. The lessons are short and practical, and if you apply what I teach in just minutes day, I guarantee the person will start to feel a real difference in two or three weeks. That’s how I designed it anyway.

Rayna Neises: Tell us what would be one of the biggest surprises to you about caregiving? Obviously, you weren’t expecting to be a caregiver at this point in your life, and so what surprised you most about it?

Rick Henkin: Oh, there’s so many aspects of that question. I learned that I had to really work on my patience. I had to develop my patience. I mean, what else surprised me is, look, she’s my wife. She’s declining. I’m, I’m sad a lot. I, [00:16:00] I, yeah, it, it’s a, a few months ago I was getting her ready for bed, just so people know. I do everything for Sonia. I dress her, I change her, I bathe her. I make meals. She can eat with her fingers. Sometimes she uses the utensils. And she still walks as long as I’m hanging onto her. And I, I want that to happen. I want to keep that mobility as long as possible. But I realized a few months ago that as caregivers we’re casting a very unique role compared to other people. And that unique role is because our loved ones are so dependent on us. I now call it a gift, but we have the ability to make the rest of their life miserable or joyful. I determined that I wanna make it as joyful as possible for Sonia when the time comes. I don’t wanna look back and say, I wish I would’ve done this.

I wish I would’ve said that because I’ll tell all the caregivers all the things that bother you You’re not [00:17:00] gonna remember them at all. Once they’re gone. all gonna be about those good memories. So why even focus on those now? You can’t change it, you can’t do anything about it. Just make it as good as you possibly can. And I realize some people are violent and aggressive and I mean, that’s a whole nother situation. But, yeah, you just, gotta make their life as good as possible and make your life as good as possible.

Rayna Neises: Yeah. I think it’s so important to realize that, you hit that season where your presence disrupted her joy. You know, when she thought you were a stranger and she couldn’t make sense of it all. And so being able to do something different, but now at this season, you know that you can be a comfort tour, you can be the person who brings that joy. It is really important to have that big picture perspective. And it can be tough in the thick of it

Rick Henkin: Right.

Rayna Neises: the most important things, but I think that’s what’s. Is very important to take the deep breath, [00:18:00] to take the step back and really know what your values are and what is important to you so you don’t have those regrets later.

I share about that quite a bit in my book because I think those core values are what gives us that real direction, that’s gonna give us that long-term, pride in what we’ve done and what we’ve been able to do to care for our loved ones. So I agree.

Rick Henkin: Well, I know some caregivers or many caregivers have moments of doubt in their ability as a caregiver,

Rayna Neises: Yep.

Rick Henkin: the truth is, none of us were ever taught how to navigate this. No courses in high school, no courses in college. We’re figuring out as we go,

Rayna Neises: Yep.

Rick Henkin: but I want to tell everyone who’s listening unequivocally, you’re doing the best you can and that’s good. It doesn’t matter what the armchair generals tell you. Ask them to take care of your loved one for a weekend and see how their idea changes everybody’s journey is different. But a again, how your loved one is progressing has nothing to do with your caregiving. You’re not in control of the disease is progress. You [00:19:00] could be amazing. The disease is still gonna move forward.

Rayna Neises: Yeah.

Rick Henkin: See your loved one’s behavior as a reflection of you or your value. It isn’t they? They can’t control it either, and nor can you

Rayna Neises: Yeah.

Rick Henkin: were gonna ask me something,

Rayna Neises: yeah. So the next question I had was, you know, share with us an experience of where you really felt that God showed up for you in your caregiving?

Rick Henkin: Well, what happens with me is the way I hear God is through inspiration, intuition, and hunches. I feel like that’s, God’s speaking to me, from, from inside. One of the hunches I, I received recently was get on some podcasts, be honest, just to get on some podcasts. Hadn’t thought about it, just, it just hit me one time. And so I started reaching out, to let people know that there’s an answer here. You know, when I first started and I, I [00:20:00] didn’t know what to expect. I looked on Facebook, I didn’t know if there were any Facebook groups for family caregivers. Dozens and dozens, as we both know, with tens of thousands of members. And I started looking at their comments, their replies, it was all venting. It broke my heart. I mean, life is over. When’s this gonna end? One woman’s considering suicide easier than taking care of her husband, and I just felt like, Hey, I’ve got an answer for you. It doesn’t have to be this way. And so on my Facebook group, I don’t allow that. And if you look at my about page, it’s all about if you found something that works for you, great. Share it with everybody else, but don’t complain. We all know you’re not telling us anything we’ve never heard before. It’s pointless. And, I know it’s helpful to, vent probably to be in a group where you can vent, but, and I joined a group at the beginning. I went to one meeting ’cause all, all [00:21:00] everybody did was complain.

Rayna Neises: Yeah.

Rick Henkin: And I just asked one question. I was the only man, the rest of ’em were women. I asked one question, I said, are you looking forward to the day that gone and this is all over? And they all said yes.

Rayna Neises: Yeah.

Rick Henkin: did. just,

I didn’t, like, it’s not an attitude that I have,

Rayna Neises: Yeah. I think it’s so important. We can find comfort in each other, but it’s not just about staying where we are. It’s about taking the steps to go where we need to be. And I love that that’s what your course is about. It’s helping you to really think about how can I change the way I see this in order to be able to be better at it?

We don’t control how long our caregiving seasons are so we really need to make the best of it. There’s no telling how long it will last, and so that is one of the things that’s really important and I think it is important to share stories, make a difference,

Rick Henkin: Mm-hmm.

Rayna Neises: to hear other people’s stories.

That’s why I do my podcast, is just to be able to [00:22:00] share. You’re not the only one. And I don’t know, my dad never grabbed a pancake off of somebody else’s plate, but we definitely had our moments in in public that it was like, oh, darn. But when you learn how to handle that differently, rather than feeling like the whole world ended because it was embarrassing or whatever, that I love that that’s encouragement for others to be able to handle it, you know, when something happens for them. So I think we can learn so much from each other, but I agree there has to be benefit in, in the sharing and in, in looking for ways to make the best of what we have. If you’re in a place where you’re hearing a lot of complaining, you can make a different choice too. Look up Rick’s group and find where there’s actual, solutions and offering of encouragement and support in that way.

Rick Henkin: absolutely. Absolutely.

Rayna Neises: So, Rick, share with us, one thing that you do to live content, love well, or care without regrets.

Rick Henkin: That’s a big question, isn’t it?

Rayna Neises: [00:23:00] It’s.

Rick Henkin: What do I do to, okay, well first of all, I take care of myself, my own health. I exercise, I work out. That’s usually what I do after I drop Sonia off. And, mentally, I mean, the way I take care of myself is realizing that I’m giving Sonia the best life I can give her, you know, because she doesn’t have a choice. She relies on me and that keeps me going. I remember, saw painted on the side of a wall out here in LA was a Maya Angelou quote that said,” if you don’t like something, change it. If you can’t change it, change your attitude. ” And that’s really it. I know it’s a simple concept.

Maybe not that simple to put into practice. You have to work at it, and it can apply to so many situations in your life. Not just caregiving, but everything you’re dealing [00:24:00] with. And, you know, again, we’re all doing the best we can. And you have to look at it that way. It doesn’t matter what other people say, they’re not walking our path, they’re not part of our journey. You have to really stop fighting against the way things are. As I mentioned earlier, what if the biggest source of stress in your caregiving journey isn’t your loved one’s behavior, but your reaction to it? Well you can change that. It’s not them, they’re not, they’re not doing anything on purpose to, to. your buttons to stress you out, to make you angry. And it’s just, it’s the way I look at it. I think it’s important also, once you stop resisting and fighting against the way things are, all of a sudden they just drop away a huge portion of your stress that caregiving brings. off your [00:25:00] shoulders. It just does. And I mean, I’ve spoken to people, why does he or she keep doing that when I’ve asked her not to? Why doesn’t she listen to me? Is she doing this on purpose? And if you’re, if you find yourself thinking those things, and, believe me, I know you do. We all do . There’s a cause and effect relationship at play here. Depending on the stage of dementia your loved one is in they may no longer be able to reason to see the logic and what you’re saying. Understand the why behind your request, you could yell, scream, plead, but all that accomplishes is upsetting the both of you and upsetting you.

I did that at the beginning and I’d see the pain and confusion in Sonia’s eyes and they feel terrible about it afterward. And as long as you resist the situation, it’s gonna cling to you. Like a shadow. just follow you wherever you go. It’s up to you. Yours is the only brain that can change, and my focus and I try to apply it to [00:26:00] all aspects of my life. I wish I would’ve learned it 50 years ago, but you know,

Rayna Neises: Yeah, that’s what I was gonna say. It’s not just caregiving that we really need to learn those things in life. It is work, it’s everywhere in life. So learning how to find out what is most important and focusing on those things and the things that we can’t change, it doesn’t do us any good to stress over ’em, so definitely.

Yeah.

Rick Henkin: And I’ll tell you when things bubble up for me, I’ll pause and ask myself, what’s more important here? Adding to my stress and raising my blood pressure, or living a healthier, longer life. That’s how I look at it. When I frame it like that, the choice is obvious. I wanna live a better, a healthier, longer life.

Rayna Neises: Yeah.

Rick Henkin: that helps. Your loved one helps Sonia as well, because if I’m in that kind of a better place, a better situation, the quality of our relationship is gonna be better. I mean, it just, it is.

Rayna Neises: Mm-hmm. For sure. Well, Rick, thank you so much for [00:27:00] coming and sharing. I like to close with just one little tip. One thing that you wish you had known when you first started caregiving or that you think would encourage those who are in the middle of their caregiving.

Rick Henkin: I tell people, to be grateful. And they’re like, what? Be grateful for what? Be grateful. It didn’t happen 10 years earlier. ‘Cause now you have 10 more years of memories. And

Rayna Neises: Yeah.

Rick Henkin: I’ll leave it at that.

Rayna Neises: Be grateful for what we have and the time that we have and what it looks like. We make the most of it,

Rick Henkin: Absolutely.

Rayna Neises: Thank you so much for sharing Sonia with us and share with the audience how they can, find out more about your course and stay in touch with you.

Rick Henkin: Okay. My course is at For Family Caregivers, FOR www.forfamilycaregivers.com. It’s Rick@forfamilycaregivers.com and I’d be happy to help you any way I can. And then I have a Facebook group as well.

Rayna Neises: Alright, well thank Thank you so much for sharing with [00:28:00] us and definitely check out those resources listeners.

Rick Henkin: You take care. Have a great day.

Rayna Neises: Thank you for joining us today for Stories of Hope with Rick on A Season of Caring Podcast where there is hope to live content, love well, and care without regrets. If you have medical, legal, or financial questions, be sure to consult your local professionals and take heart in your season of caring.​

*Transcript is an actual recount of the live conversation