Mindful Dementia Care

with Melissa Smith-Wilkinson &
Ruth Dennis

Ruth Dennis, caregiver, and author of Mindful Dementia Care offers her key caregiver tips. From a simple calming breath to learning to forgive yourself. We laugh and get real with how tough it is to be a caregiver. All the while, offering ways you can keep your “center” and who you are while caregiving without risking losing that part of yourself after your season of caregiving has ended. Here’s one secret: Knowledge is power, the more you know about what is going on with your person and the systems you are working with the easier everyone’s life will be. Ask questions. Be annoying at times.

 

Resources:

Vista Living: www.vistaliving.com

Mindful Dementia Care Book: Purchase Here

Caregiver Stress Busters: www.caregiverstressbusters.org

The Memory Care Alliance: http://thememorycarealliance.org

Alzheimer’s Association: https://www.facebook.com/alznmchapter

Melissa Smith

Hi and welcome to the Caregiver Wellness podcast, I'm really glad that you're joining us today and I have one of my favorite really mentors and influential people in my life, Ruth Dennis. Ruth is a very long time caregiver, both professional and family caregiver. And her wealth of knowledge and years of experience are going to be evident to you within just the first few minutes. Her candidness, her honesty and her sense of humor is so invaluable. So I look forward to hearing what you think and having you let us know in the comments or feel free to buy us a cup of coffee if you really enjoyed it. There's a link there as well. Right now, let's enjoy this conversation with Ruth.

 

Melissa Smith

So that's actually one of the first things I wanted you to offer us is just an arriving tool. So before you do that, I would love for you, Ruth, as we're chatting today and Caregiver Wellness Retreat, both on our podcast and on Facebook Live. We are so honored to have Ruth Tennis with just a living. And mostly I have gotten to know Ruth through my own experience as being the daughter of a caregiver. And I feel so honored to have you and to continue our relationship together even long after my stepmom has passed away. And Ruth, I'd love for you to maybe take a sentence or two. I'd love for you to describe. Perhaps in a few sentences who you are? Who is Ruth? How would you describe yourself?

 

Ruth Dennis

Good question. I come at this from a lot of different perspectives. Yes, I have been with Vista Living for 21 years, helped found it. My background is as an artist. Artists start therapy, drug and alcohol rehab, the whole nine yards. A lot of different mental health work over the years, the other pieces. I was a family caregiver for 22 years for my brother who had doubts. So in a couple of sentences, I kind of get all the pieces to that. And my involvement with Vista has been a place where all those parts of my life could be part of what I do. Mm hmm. Which is a really rare, rare thing, I think even even a therapist. And although Santa Fe is a lot better about that the most places, but, you know, being a cook, being someone who gardens, being a family caregiver, being an artist, all blends in to the work we do as caregivers at Vista. And you know, that's a neat thing being parents of folks who have kids, you know, all of that can I can hear you. And I'm getting tech lectures from my 12 year old videographer's, you know, but there's it's a neat thing. It's I love my life. I love my little life.

 

Melissa Smith

If I could reflect back for you, for you for a moment, I would I would add to that because you have all of those  are what I heard you say, are roles that that you play, whether it's caregiver for a loved one or caregiver at Vista and an artist. But what I see when I look at Ruth is a nurturer. I see an incredibly creative human. I see a problem solver with not methodical, but but but with eyes wide open. In other words, a sort of a vista problem solver, you're able to see a full picture of something and then troubleshoot it. I also see if I can say this or that, someone that you don't see. Like, you'll see a challenge, but you don't see that it's an obstacle. You see you see it more opportunistic. Am I on?

 

I think you are. I mean, we have a friend who once said you're a hopeless romantic, which sounds really silly, but because sometimes I become somewhat cynical. But basically, I do believe and I think a lot of that comes from just my brother's influence and saying, you know what? You see what somebody can be if you're willing to walk with them, there would be our elders. Yeah, well, with your stepmom included. They have this potential, they can go anywhere that we're willing to walk with, and one of the most beautiful things that I witnessed was with your stepmom and being in the very depths of dementia, being this nurture and counselor in some ways for another elder who was even further into the depths of this disease. And you see these moments in dealing with elders, with people with developmental disabilities, with, you know, my brother. Was a musician, he was an artist. He was non-verbal, but he knew every word to, you know, every word to welcome to the jungle, every word to a Lion King, every, you know, every song and every plot to every science fiction movie ever made and live on technology. He was better than I am. He hooked up to the players from my father when he was little, you know. So there is this potential as human beings that we have that is amazing and vibrant. And there is not  always a way to figure out something. It may not be a traditional way, and it has also helped over the years that some of my best friends are really good at logistics and organizing. That makes a big difference, it helps to have another part of my brain that is outside my body. You know, so, yeah, I guess I am an optimist, I guess in some ways I you know, in some ways I am a hopeless romantic and that I think we can change things and make things work. Mm. Yes.

Melissa Smith

I want to talk a little bit more about that, but as I alluded to earlier, I would love for you if you're willing to share just an arriving exercise. You have an incredible book, Mindful Dementia Care. And in fact, I recently listened to recent. Oh, gosh, has it been maybe a month or two months ago a support group where you offered a Ramdas meditation? And it just really struck me about how much you really do incorporate the mindfulness piece. And so I'd love for you to just help us arrive here for a moment.

 

Ruth Dennis

Well, this is just it's a really, really basic one, which is if you're sitting, sit straight up feet on the floor about shoulder width apart, make sure you feel the ground that you're aware of your weight on the world. Put your hand over your heart. Feel the beat, take it. Just kind of breathe into it slow and easy. And feel your heartbeat. Feel your feet on the floor, feel your heartbeat. And then in three of those. Out through your mouth. Just do that three or four times and keep your focus on your heartbeat. It's so much better. It helps to just be kind of aware that there is, you know, an earth beneath your feet and the heart is kind of a rhythm to connecting to the world, to each other.

 

Melissa Smith

It certainly is. I love thinking about that, because really. We think when you think about it, right, the hands connect the heart, you know, and it's that connection and also, you know, kind of a symbol of commitment to ourselves and other people, you know. I know we have some things are to chat about, but I want to circle back to something that you just said in the opening. Even your brother and and looking at other elders in terms of what is possible and knowing that even they surprise us with what is possible. How does a caregiver. Cultivate the potential in themselves to be patient for that or to be open minded about alternate solutions, maybe because I think sometimes we get it in our head like, no, this is the way it needs to happen. This is, you know, and our elder or the person working for, you know, it's just not happening. How do we cultivate that in ourselves?

 

Ruth Dennis

I think one of the toughest things that any caregiver faces, whether you're a professional or personal, but especially if your personal, if you're caring for somebody with dementia who you knew when they were healthy and when they were strong and hiking five miles a day and traveling the world and, you know, articulating books. So you expect them to be in a role that they were before and you have to meet them where they are, which can be very different. But if you stop, if you can make yourself and this is it's something that you won't happen all the time, that you just kind of do it as a practice every day, every hour of, OK, I'm going to meet this person in front of where they're at and I'm going to enjoy the time with them that they bring to me and that they bring to both of us. One of the saddest things I ever worked with. Maybe the saddest thing I ever worked with was we worked with this family and they loved their dad and loved them, something fierce that they were so busy protecting the life that he had had and who he had been when he was this patriarchal guy who did everything the same way every time he was in control. Then they lost sight of this guy who would have been happy if they put up the nice part. They put the nice pottery away and just the Pizza Hut on speed dial. And he could listen to Elvis and pass the talk and hold his wife's hand. That would have been all you need. But they were so, so busy building everything about their care around who he had been before. That they forgot who he was, and I think it's so easy to do I mean, I struggled with that as a family caregiver, even caring for my brother's physical needs, because he would need more rest. He would need more time as opposed to kind of being basically the second layer of Santa Fe and being everywhere and knowing everybody. And if you just needed more time and more quiet. And I had to learn to appreciate that. But with that came he actually talked more in the last year of his life, you know, complete sentences. And but it was because he could read it and it was a different way of processing. I've worked with the elders, one of the elders I worked with, and. Really a perfect moment in a lot of ways for us to have been corporate lawyers made her living with words she was damned good at, and she started losing her verbal skills. She started sketching and drawing should never drawn in her life. You know, occasionally they'd have a bring a caregiver in the caregiver, it would try to get her to do so, but she became obsessed and she kept Sketchpad after sketch and she identified herself as an artist. She told her husband, I'm an artist now. And I think there is that potential for everybody. There are also cases to day to day caregiving that are heartbreaking in some ways, but they are also really, really funny pieces to this that are just hysterical. You know, if you ever want to not know what you really look like, asking the Alzheimer's patient know they're going to tell you they you know, but or, you know, my brother with you know, with developmental disabilities. And it could you know, they're just really funny pieces to all this. And it's so easy to get wrapped up in all the stuff you have to do that you forget to just appreciate the time that you have. And that time it was a gift. And you know, and I think with dementia, that it's a gift, but it can also feel like it's taking forever. You know, you're watching somebody change over 10, 15, 20 years, and, you know, there is it's you have to really make it a part of yourself to accept those small moments and those glitches and that potential to do something else. Basically, when we talk to caregivers and we train staff, it's you're training people to just keep trying something different because what you did yesterday probably isn't going to work five minutes from now, let alone today. And where people are at can change so constantly that, you know, the same person who is calling every name in the book in the shower and throwing things at you will hold your hand an hour later and tell you they love you or just put their head on their shoulder. And it's you just have to. I think dementia care isn't caring for somebody at the end of their life in any type of hospice for long term chronic illness situation is maybe the best and training that there is out there for the best. You know, there's I grew up in a family that was Baptist, was that studied to be a minister. And there's a line in the Bible that says pray without ceasing. Mm-hmm. And basically, when you're doing especially given take care of that. Also, any type of palliative care, it's an exercise in mindfulness and praying without ceasing and just being with somebody you know, and that brings the peace that you bring to things makes it really, really important. Because to do that eight, 10, 12, twenty-four hours a day, seven days a week, 365 days a year for. Five, ten, twenty, twenty-two years a lifetime is that's a lot of. You know, and that makes what you do really, really important.

Melissa Smith

I love that you talked about when, you know, one of the principles that I found of Zen is, you know, I think there's a misconception that that's without thought, you know, or but that's part of your brain. Right, as a part of because that does happen. I think for me, the Zen is being able to. Find that pause and rather than react, choose to choose how I respond, and so whether that's with, you know, like you said, keeping it light and knowing that it caregiving can be funny, like that's one of the things that happen are really hilarious, funny. And, you know, I think if you can get over the initial, you know, I think we're conditioned to be embarrassed or to have or to view it as a tragedy.

 

Ruth Dennis

I'm losing this person. I'm losing. And you're losing what used to be the rolls and what used to be, but you're not losing the core and you know the episode with your stepmom and the other lady. Was this really a beautiful thing, because you could see both of their course they had in their true depths of the disease, the court was still there? I remember and this is another one that is in the book of. I was on call when I get a call about 3:00 or 4:00 in the morning and the lady had passed. And, you know, go in, get up, go in. Right, we're getting out the door, go into call and the latest last words were, thank you and I love you. Well, forces and the level of that place. No matter how frail her body got, no matter how badly her mind was in her mind was, her brain was not able to control her body at all. At that point. The core the part of her that was sold was still there, and I think it's got to be heartbreaking. I cannot imagine, you know, we've worked with spouses that. You know, one man that I know well cared for and met his wife when he was 18 years old, they were one of those couple. They were married at 19. You know, they were one of those couples that just very seldom happens anymore, but they were part of each other, so. All right. And I cannot imagine watching someone with that kind of partnership and losing. But they were able to. And it was not easy. You know, it was not easy in the Alzheimer's process, but they were able to finally get back to that core. And, you know, you never lose the core. And sometimes, not often, but once in a while, that core actually gets better. You know, I've seen a couple people become a lot more loving and a lot more connected to others with that core, with that you strip away all the B.S.. In life, and you get back to what really matters in your life, which is someone to hold your hands, to cry to someone. We all have good food animals, sunlight, plants. Colors, you know. Things that are just part of how we express ourselves as human beings. And you get past a lot of the B.S..

 

Ruth Dennis

When I hear you talk about core, I think this circles back to something I know you wanted to talk about today is how not to lose really who you are in the process of caregiving. And I would say whatever you're about to say is most likely wouldn't apply to any human I know for me, an example as an example, here we are, you know, going through these months of transformation and redoing our life in a different way and. Realizing I want to spend more time doing this or doing this, this is not so important anymore and it's really given me an opportunity to to shift my entire perspective on what I actually value. And I think caregivers, as they have that almost same opportunity, the things that they thought were important and are no right now longer. But then there's this element of not losing their core, you know?

 

Ruth Dennis

Well, one of the thing and, you know, I've worked with I've been a professional caregiver in some form or fashion for, you know, since I was 22 or 23 years old. So for more than 30 years and I am a family caregiver constantly for 22 years, probably for most of my life, loosely but constantly for 22 years. I think one of the things that can happen, and especially with caregivers who care for someone in their whole. You know, who are you know, whether you're like my brother was Medicaid funding and development, you know where. Residential care, not an option, was what was covered. But also professional caregivers, it's like, who are you when you're not at work, what you don't learn as especially as a family caregiver, is the fact that it doesn't stop when someone passes. That all of a sudden you're left with this part of your life that you have to figure out what's there, and there's a real tendency, especially in the deeper parts of hospice care for families to just give up. Everything that they are to the care, to where all you're doing is the care, all your connections are your friends, if your friend has become if the hospice nurse is your best friend, probably not the healthiest situation you've got. And work in the caregivers who worked with me, who helped with work. They were long term and 12 years and said it's almost 17 years with them. So they really knew that they were a part of our lives and his health in our family. But one of the things that I tried really hard to do and I didn't always accomplish and, you know, part of this comes from having an amazing work situation. But is to hold on to the parts of me that weren't a family caregiver to resist the temptation to OK, we can make it with the waiver, I'll just drop work and I'll just be a caregiver. Which at times could be tempting, but I'm glad I didn't do it, because you need that base of who you are, whether you know, whether you're a docent in a museum before your spouse gets sick or whether, you know, one of the husbands of one of our elders had before she got placed pretty much given up fly-Fishing. And he made the date. He did the whole you know, he was obsessive about it, kind of given it up for several years as a family caregivers, a spouse, and got back into it when she was placed a little bit. But it helped give him a ground and she passed with me. It was being an artist and having a. You know. New Mexico, if you can grow anything that actually produces food or flowers here, you actually have to work at it. I'd like where I grew up or you just threw things at the ground and they grew like crazy.But it's helped me be a person. And you've got to hold on to that part of you that makes you a person, though, whether it's hiking or yoga or, you know, or your church or your faith or your. If you everything becomes care. Then there is no way to prepare for what happens when you're not a caregiver and for the who am I now? I mean, former caregivers go through similar things that people who get divorced or lose a business go through, which is cool. Am I in the face of all this? What do I mean? And I think there's we have a tendency to assume that caregiving is harder to. And there is a different piece to that. You know, you have to keep some part of who you are and, you know, the so that you can tie back into it later or so that you have it when it's too stressful. You know, I think one of the toughest things any family caregiver does is when they hit the point where physically I can't do it. And they have to do placement and what that first week or two must feel like the silence of that house or the, you know, oh my God, I don't have to wake up at 3:00 a.m. and check on somebody twice or, you know, you have to rewire how you function. And we need to talk more about how people rewire, how they function. Know, we also need to forgive ourselves for a lot of stuff. If I had anything that I can put it for cruder ways, but you're kind mess up. I would tell this to any family caregiver you talk to, any nursing staff caregiver, any home health aide, you know, you don't mess up, you're going to screw up, you're going to get tired, you're going to be cranky. You're going to make a decision or try something. That sounds like a really great idea at the time. And it's going to bite you. So it is going to go wrong. Let's get over it now because it's going to happen. You know, we have whole industries out there. That are built on punishing professional caregivers when they make a mistake. And, you know, basically, we need to get over it, it's going to happen, got to make a bad call, you know, and this especially applies to people who've been doing this work for 20 and 30 years because why did I make that mistake? You made that mistake because you're human and you can't see everything. Right. And it happens. Even so, there's a lot of forgiving ourselves that we have to do. You know, and a lot of, you know, family caregivers, there's a lot of guilt around placement. There's a lot of guilt around bringing in home health or needing to get funds for Medicaid or, you know, all the stuff that you have to do for pulling mom or dad out of their home of 60 years selling property. You know, if it's not a bad thing, you can say it would be it's just part of the process that's going to happen.

Melissa Smith

I think that's an excellent way to frame that. The antidote to guilt is forgiveness, but it starts with an internal bank for you to expect your loved one with dementia to forgive you. It's not. It's not. It's not. It's not even a possibility.

 

Ruth Dennis

Well, they probably didn't remember to be mad at you. Exactly.

 

Melissa Smith

And that's where the laughter comes in. Exactly. And I think I think that's such a beautiful thing to remember that we're probably the ones that are hardest on ourselves. There probably isn't anyone in the world that is harder on you than you know.

 

Ruth Dennis

I had an episode that happened after my brother died. My friend lived for some, you know, the ballots to my brother's passing is my best friend's son got engaged and so was. Go for the funeral with the then fiancee and was talking to for her son and trying to get more of a good life and a fairly cranky baby sitter, five times and two years, give me a break, OK? Yeah, I could try to get over you go. You go. But all caregivers do it. Every single caregiver I've ever known.

 

Melissa Smith

Yeah. Why is it that we have these ideals of perfection? Because it's you know, if anything is far from perfect, that would be taking care of someone else. You know, it just means that the little imperfections become more obvious because they're and an interaction or a co, you know, a relationship and one with a team of people usually.

 

Ruth Dennis

So I think you and I have had the discussion about the expert work because I just hate it. Nobody is. There's not any such thing as an expert caregiver. I mean, if you've been working in the field 10 or more years, you kind of get stuck with the label. But it doesn't exist because. Like you said, it's a relationship, every situation changes, it is different. You have to try and you have to know, sometimes things go wrong.

 

Melissa Smith

Yeah, yeah. I think it's more of because we talk a lot about this and the yoga trainings I do about embodying a certain practice and practice doesn't mean an end to it or an idea of perfection. Practice is exactly that. Right. It's every day you get up and you do and you and there are some things are going to get a lot easier. And then there are things that are always going to be changing. And that's the part of it where you have to enact the humor and you have to, you know, continuously use that formula of releasing the guilt through a sense of self-forgiveness. So.

 

Ruth Dennis

Well, you know, I'll give you one of the funnier ones. Yes. This is actually a personal characteristic of a I in a staff meeting. So I shot the photo off at work. And Morgan was I had left were very active in our caregiver at work and was fucking looking at the bathtub, but not going to get it. Just kind of OK. Oh, I get a call after lunch from Maria. She's like, I don't know if I should laugh or cry or just be embarrassed. And my brother proceeded to dump his medicine in the bath water, sat in his bathrobe with nothing outside until the next caregiver came in at one o'clock, and then he promptly got dressed to a movie with her. But for Maria, about how she begged and pleaded or bribed or else gave him space, he just was. And it was the worst day of the week that I had to turn my phone off. And the hospice nurse community still refused to get dressed up. You know, stuff like that happens. I mean, you know, I had a former director who was very happily leaning over telling folks what to do in the kitchen and organizing something. And one of the elders came up and lifted her skirt up. Ed gave the whole set of elders of the dining room for show, and they thought it was hilarious and she was about to fall over. But, you know, it happens. Stuff happens. This and these guys have no sense of tact in those sorts of people doing it. Thank God Tim was doing a lecture for a radio show verbally and come to find out, one of the elders was in the back playing violin and making rabbit ears and didn't exist, thank God. But, you know, he was having a ball with it. And, you know,  it's part of caregiving. And they're going to you know, they're going to have fun with you. Yeah. You know, and, you know, don't take it personally that they get mad at you and don't want to do something. And then the next person who comes here is the angel or, you know, or they're calling you every name in the book. And the EMT guy is just the most wonderful thing ever encountered. So it's part of it's part of the drill is out there and it's you know, it's just part of everything. And I think we're so conditioned to think of. Any long term illness or anything that you're not going to beat is a tragedy. And part of it is part of it is awful, it's sad and scary, part of it is also. Just the way it is and just life and OK.

 

Yeah, well, I'm on that note, is there anything else that you'd like to to close our conversation with? I know this is such a great prelude to some things that you're going to be sharing with us on October 2nd.

 

Ruth Dennis

And then on October 2nd, we're going to do basically a little series of creative projects and meditations on what I call the three words, tempted to add another two or two. But on the way, caregivers make decisions on how you face decisions. I think a big piece that I would add is no good knowledge is power. The more you know about the process your person is going through, the more you know about the systems you're dealing with, especially if you're dealing with, you know, eating system. I mean, whether it's the get to know the people who run your assisted living, get to know your home health agency, ask questions, be in a way if you're dealing with Medicaid or VA or waiver, know those systems and don't be afraid to argue with them and don't be afraid to support them or say thank you when things are going good. You know, I think another track we get into is caregivers is it's got to always be a battle. It does. Sometimes it's really going to be a battle other times. Really good people come into your life and you have to be open to them, you know, and there are terrible situations out there. There are also situations that are basically innately loving. And so be open to the fact that those exist to.

 

Melissa Smith

I think that's beautiful, beautiful advice as we think about, you know, kind of circling it back to caregiving, really requiring a lot of Zen. Another aspect of that for me is, you know, letting go of outcome. Anything you walk into, there's no expectation of it turning out the way that you think it will. So and I love your advice about knowledge. It's power. It's power, and it's actually science. So there's so many studies now that talk about, for example, the more you learn about understanding either your nervous system or how pain works, you're able to better self regulate. You're able to decrease your pain just by learning how pain works. And so the same is true with anything.

 

Ruth Dennis

Yeah. And to accept that there are certain things that, you know, they're not going to be fine, they're not going to be easy, but they're part of a process. And how you deal with them and live with them doesn't mean they're going to go away. But it doesn't have to dominate your life or the person you're carrying because life is. Absolutely. So there is everything and yeah, this is the book.

 

Melissa Smith

Hey,  it's fantastic. In fact, I've recommended it. I mean, I am a little biased because I know you, but I pretty much recommend it to every caregiver that I come across, one because of its accessibility and its simplicity, but also because of the values that you present in regards to that. And I think the combination of those two things are such a contribution to caregiving. So thank you for everything you do in there.

 

Ruth Dennis

Really, we're blessed to be in a community with really, really great resources. I mean, you know, there are so many good people doing good work here. And that's a huge, huge it.

 

I completely agree, I think everything from, you know, David with memory, Caroline's here in Santa Fe to, you know, to a broader perspective, there's so many resources out there and I value that the book is so specific on dementia care and caregiving.

 

And I think that's what I really enjoy about what we do with Caregiver Wellness Retreats is I constantly get to point back to those really specific resources that are doing really great things. And I think sometimes it's just a matter of caregivers learning, where do I go, how do I even access this information?

 

Ruth Dennis

So there is your website has great info. Our Web site has some really good info. You know, there's good stuff going on out there. There is. We've got, you know, stress busters is another thing that's coming to New Mexico. Demetra Possibility's conference in November. Right.

 

Melissa Smith

I'll put the link in that and in the notes so that everyone can have access to those. There's a couple of things as well, so go for them. Well, with that, I'm so grateful for you and you just taking time to share your heart and to share your wisdom with all of us. It's really a tremendous gift for not only this community, but I know for everyone listening in. So we'll also put where you can get Ruth's book. And I'm excited to share that with everyone. And I really look forward to diving into all the words regarding what more we might extend the time. So we will definitely. So if you're listening and you can sign up for the retreats and just specifically for a session, and it'll also be available in sessions in the hopes that there's this people I'm excited about, it's very, very heavy on the arts, which I think is fantastic. And I know you really enjoy that too.

 

Ruth Dennis

But a really, really good way to get connected, especially with it is anybody and everybody, but especially with dementia, a really important way of connecting it is.

 

Melissa Smith

I agree. There's a beautiful in fact, I'll have that link as well, the gorgeous short video you did on the importance of art and caregiving. And it was incredibly moving. So we'll look at the video.

 

Ruth Dennis

That was Joe, Joe.

 

Melissa Smith

You were talking and sharing your heart. So thank you, Joe. And also Ruth. Well, thank you again, Ruth. And I'm so grateful for you. Have a wonderful day.

 

Ruth Dennis

And I am for you. And thank you, everybody. Hang in there.

 

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