A Supportive Podcast for those Dealing with a loved one with Memory Loss

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Positive Connections Bring Moments of Joy

Positive Connections Create Moments of Joy

00:00:00 – 00:05:01

(Intro)

Finding joy and contentment is easier when we have positive connections with each other. Our words and actions play a significant role in determining the quality of our loved lives. Creating happy moments with my mom was a top priority while I was carrying for her it was an elusive and challenging goal but a worthy one. Since our mental wellbeing also plays a significant role in the quality of life. It’s crucial to guard it as if their life depends upon it by carefully choosing our words and actions we influence the behavior of our loved ones. If we can remain positive, we are likely to have more positive interactions. More positive interactions will lead to less stress and frustration for everyone.Who doesn’t want less stress and frustration.

(Sponsor Plug)

 This episode is brought to you by family history film, visit myfamilyhistoryfilm.com to find out how they can preserve your family memories in the fascinating documentary film. 

(Jennifer)

Welcome to fading memories, a supportive podcast for those caring for a loved one with memory loss. With me on the podcast today again is the dimension nurse, Gayle Weatherwill, we’re going to be talking about finding moments of joy. Hello again Gayle. 

(Gayle)

What’s going on? I take that back, don’t answer that. Don’t ask if you dont wanna know. 

(Jennifer)

Very true, my Dad always used to say what is this dumb question quiz time. Yeah, so we’re gonna talk about moments of joy today which I think a lot of people could be using. Now normally, we’re talking about it in relation to people caring for somebody with Alzheimer’s or dementia, but I betcha there’s gonna be some crossover today.

(Gayle)

 That’s a fact. You know when you when you say talking about finding moments of joy, I just have this vision of the downtrodden caregiver thinking yeah right moments of joy. If you say that one more time I’m going to have to throat punch you because there aint  no joy in my world right now. So I think more the focus is going to be on communicating with our loved ones. When language fails us so that we can find those moments of connection and those moments of connection are what every caregiver longs for and that is what gives us joy so that’s how we arrived at the joy. We’re not going to be talking about you know, hiring a bouncing house for your backyard and pony rides, and all those other exciting things were gonna be really looking at the practical ways of sustaining yourself as you go through here and it is possible.There are moments of connection to be had, and those are the moments of joy that I’m referring to.

(Jennifer)

 So how do we go about connecting with somebody when language is pretty much gone? My mom’s still chatty. But, it doesn’t make a lot of sense, it’s not comprehensible.

(Gayle)

 Right, and what mostly requires is a change in our own mindset. We are used to communicating with language since we were you know in the crib, somebody’s hanging over the crib. Say mama or say da-da. So I mean, this is ingrained in us from very get go so to switch from language especially with somebody that is still talking you know, it’s nonsensical to us but you know there are some mumble words here and there and our instinct is okay, let me try to figure this out. What is she actually trying to say which is a recipe for making both yourself and your loved one crazy. Because there is no rhyme or reason. All of the brain centers that language comes from and there are lots of parts of the brain involved. There’s the part that formulates a thought.

00:05:01 – 00:10:09

There’s the part that sends the impulses to your vocal chords. It’s a complex process so when people are attempting to talk and it’s all jumbled up. We’re not going to be able to decode it. There is no decoding.

(Jennnifer) 

 I can attest to that, mom speaks actual words. And for someone who isn’t familiar with her many times, they’ll look at me for clarification like what exactly is she talking about? Like one day she was talking about the quote and quote, “the boys”. My mom has two daughters,there were no quote boys. She does have two brothers. So I’m like, okay. I think she’s talking about her brother. So I tried to go down that path and then she took a left turn somewhere. I have found and it took too long probably, but  I have found when I scrunch up my face in contemplation to try and figure out what part of history is she talking about? She picks up on my it’s not even a frustration it’s more like ,I guess I’m trying so hard….

(Gayle)

It’s a low grade anxiety because you want to get it right. 

(Jennnifer)

 And she picks up on that and gets pissy. 

(Gayle)

Yeah, then they shut down and it’s like man, which is you know part of the secret to finding those moments of joy in connection are becoming acutely aware that our loved ones are acutely aware of every nonverbal in the book. I compare it to you know what we’ve always been taught when people lose their sight, they developed a hyper acute hearing. When people with dementia lose the ability to communicate and to receive communication through language they developed a hyper acute sensitivity to nonverbal cues. 

(Jennifer)

I’ve experienced that that.

(Gayle)

That  is a biggie when I go to facilities and teach staff, you know one of the biggies that I talk to them about is if you go in that room in a rush, I can guarantee they’re gonna shut down. I mean it won’t even take two minutes because they sense that. So even if you’re like oh my god you know it’s the same thing at home when we’re sitting there going oh my god the doctor’s appointment is coming and she took forever to eat lunch, and now we’re going to be late and I gotta hurry up. They pick up on that so it becomes an acting gig and I tell people you’ve got to act as if you have all the time in the world. And you know you’ve  noticed my voice drop. My pace of speech slowed down and I’m breathing which is always a good thing. 

(Jennifer) 

This is true. 

(Gayle)

So one of the keys to connecting with our loved ones is controlling are nonverbal communication. Facial expressions are huge, very huge. Are you smiling? Are you scowling? Are you -You know what’s going on with your face? That’s a big big biggie, and of course, you know, how are you standing? Are you standing over them? Are you there with your hands on your hips you know trying to prevent your hands from wrapping around their tiny little throat?  You know you do what you gotta do. Just, keeping it real here. So we have to become hyper  acutely aware of our own physical presentation. You know how we’re standing, how we have our arms hanging or doing or whatever, and what our face looks like and our tone of voice, the volume of our voice. And the speed of our speech, slower is better. 

(Jennifer)

I find with mom I almost have to put space between almost each word.

00:10:10 – 00:15:15

Because if I even if I speak slower ,which this pace is usually okay. Not always but if I speak almost at a normal pace, I get uh. And then sometimes if if she catches me off guard with that kind of rude tone of voice question which doesn’t always happen, then you know now all of a sudden I gotta make sure my face isn’t doing something. 

(Gayle)

It’s an acquired skill.

(Jennifer)

 That is for sure and I learned that you know like I’d I’d be listening and thinking I had I did a video,  I do post videos of some of our encounters as a way of teaching people with advanced Alzheimer’s looks like and this one gal said you make me so sad because you you look like you’re so angry with your mother. And I’m like I don’t know,  I  watched the video with no sound, I look angry to this person and I watched it three times and I think she was hyper sensitive because all my mom couldn’t see my face. I was basically making faces at the camera. But it was kind of like she’s Blah. Blah. Blah. Blah Blah talking talking talking words, words, words and I’m like uh. And then I rolled my eyes but she couldn’t see me because we were sitting side by side. But then I thought I did that one day, I was just like scrunching up my face. What is she trying to say? You mean, I got a historical marker or anything because it was like a pinball just Bing Bing Bing Bing Bing Bing, I could not figure out and after five minutes of me oh yeah that sounds interesting. Now then I’m brain dead of boredom but I I watched her one day I was thinking like what is she saying and I said, you know, Oh, I didn’t quite understand that she got so irritated with me. So now I don’t make that face. 

(Gayle)

You’re making progress Jennifer. 

(Jennifer)

Its Only taken twenty years.

(Gayle)

Well I’ll tell you man, It’s a learning curve. That’s for darn sure. 

(Jennifer)

As soon as you have it  figured out, they go and change on you.

(Gayle)

 I’m telling you and I’m glad you mentioned that you had videotaped some of it because one of the best way is to know what you’re face is doing because once again, that is an innate part of us. To watch ourselves like you did with the sound turned off and say oh you know. What I find is that if I am consciously focused on relaxing my face. You know being and that goes back to really being mindful, being right in this minute because when my brain is going okay well, hopefully she’s gonna do okay at the doctor’s office ,if she does that we can stop at the store for just a few minutes but if she doesn’t then what am I gonna fix for supper. And in the meantime, our face has taken off on its own you know and and is doing its own thing. So  it’s learning about being sensitive to ourselves, which is not something that we’re generally used to. There have been several studies that have shown that when both caregivers and people in the early stages of dementia were trained in mindfulness based stress reduction by our good friend John Cabot Zen and you can find those courses online. That when people were trained, which basically that skill and it is a skill. Focuses on being in the right now and paying attention to what you see feel here in this moment as opposed to where we usually are, which is you know several shakes into the future. 

(Jennifer)

All over the place. 

(Gayle)

But it was really interesting because there were several studies done and what they found was even when the person with dementia was in relatively early stages and went through the training, even as their cognitive status declined.

00:15:16 – 00:20:05

As a group, they still had fewer problems with behavioral issues. And definitely the caregivers had a lower rate of depression and which you know, which was the chicken or the egg you know they were calmer, their loved one was calmer.Or their loved one was calmer so they were calmer but you know I always encourage any caregiver wherever you are along that road to look into mindfulness based stress reduction you have to you know buy into the whole thing. Nobody’s you know gonna bring me a little Buddha to out in your yard and you know sit in front of and go alm .

(Gayle)

 Funny you say that because this week which is – today is March eighteenth twenty twenty so the episode that came out yesterday was on mindfulness. And even though I’m not I mean I’m in northern California, I’m not one of those. Yeah I’m not that far from Berkley, I;m ar Ground Zero for the wo wo people. But I I I have never been able to meditate and I posted that episode. They’re not usually that close to actually record because I always record ahead incase of emergencies like mom in the hospital or the whole world shutting down. So he he was giving me tips and my mom had been in the hospital for about two and a half days and I was walking across the house and I could just feel myself, just winding  myself up. How am I supposed to make this decision?

You just like feel the spring was winding tighter and tighter and I said stop. And I said, okay and the way he suggested doing it was to sa knoy,  embrace the feeling and greet it. So i was  like okay, hello anger why are you angry? And all of a sudden. It was like the light went on and it was like it’s because I am trying to do the best I can for my mom and I’m like Oh hey I feel pretty good about myself. It was like that amount of time it was so like oh that’s cool. 

(Gayle)

And that’s more the focus you know just picking up little hints like that. It’s not that you know you’ve got to have this big practice of meditating, but it’s you know learning about ways to kinda short circuit the hamster wheel. When its going, one of the things that I really like that someone taught me was when I’m like stressing or Im in a a bed whatever I can stop. Sit down. Close my eyes. And with the understanding that I’m not going to open them again until I have heard six distinct sounds and cars on the road don’t count and when I first heard that I was like eh its a whole load of woo haw.

 But I tried , Im not averse to exploration. And it works I mean you don’t think about it but when you stop and you close your eyes and you’re sitting there and youre like okay well, the refrigerator just came on. I heard that and you know the house is settling so I just heard creek and I can hear the cat in the bathroom scratching the cat litter. And what it does is it takes your mind away from whatever you were flipping about because it’s hard to come up with six different sounds that you’re hearing. So you’re concentrating on that so much that it has broken that chain and you described it perfectly. Once you interrupt the thought process then it’s like oh okay yeah we can move back into sanity now . We may not stay there all that long but then we can do this again. And thats the beauty of it.

(Jennifer)

 And it  helped so much I mean I was just literally standing by the coffee table going holy crap.

00:20:05 – 00:25:00

Like I went from about ready to just meltdown which you know would have slopped over into how I treated the spouse and you know he doesn’t need that  crap either . So it was just like, wow, this is almost miraculous and I’m gonna try the six  sounds next time.

Give it a go to  see what happens and you know one of the things that I really emphasized with caregivers is that you know when a loved one’s diagnosed with dementia we wanna learn all about the illness and the medications, and  you know the testing, the diagnosis, and Blah Blah Blah. Well the bottom line is medical science really has very little to offer us at this point in time. A lot of  people are working very hard to change that. And hopefully, that will happen sooner rather than later. But what we know is that focusing on the emotional issues and  developing resilience, which is what I think about those little measures that we can use to stop the hamster wheel. That’s part of resilience. You know you can interrupt your stress level. Learning about those things is gonna do a lot more for your loved one. Then you spending hours pouring over the latest scientific reports it really is so you know I say to people have you looked into studying how to take care of yourself as aggressively as you have looked into learning about brain disease. 

(Jennifer)

I bet you that answer is no most of the time. 

(Gayle)

No, it’s not because that’s not what we’re – You know we got this whole huge,  the great American health care system which is run by God’s whether God knows it or not. You know they’re quick to remind us that’s who’s running the whole thing. So you know we have all these great expectations and it’s like let’s go with reality at least for a few minutes. So looking into these other  measures to sustain ourselves and talk about throat punching the term self care is another one of those that will trigger. They’ll never tell a dementia caregiver, be sure to take care of your self  and its like…

(Jennifer)

 Yea you gotta  give examples. 

(Gayle)

Well,  when people say that I just wanna say oh great now, what afternoon next week or you gonna be able to come over and stay with my loved one for three hours so I can do that because you know I think you’re really right. I really do need to take care of myself  and yeah  usually short circuits that pretty quickly. But whether it’s you know the term or whatever, and it’s not really the term we’re  responding  to, it’s the indifference of society and the people around us to what we’re going through. That you know trips are triggered when somebody says something like that because in reality we are ignored and society is, unless money’s lived through it themselves have no clue. 

I’m not sure how I got on that soap box. Well I think that’s one of the reasons i think, well it is one of the reasons that I do some of the videos. And I try not to be too brutal about them because they are videos of my mom. So I know she’d murder me if she knew what I put online with her, I’d be dead multiple times over. But people think  it’s just you know they forget who you are, they forget that, they forget how to use the toilet. Yeah not that they’re incontinent but like a month ago, I would  take my mom  out or I did and she would  say, well I have to go to the bathroom. Okay, so I open the door and walk into the public bathroom of where she lives and we get in there and she’s like, why am I in here? I’m like, okay and I said oh you said you know, of course then you gotta be  chipper about it.

00:25:00 – 00:30:05

Oh, you said you had to go to the bathroom so I came in here so you could use the bathroom and I’m going to wash my hands. 

(Gayle)

 I like the paint scheme in here. 

(Jennifer)

Yeah it was like a great place to record a podcast in a tile walled room. And so I reminded her  that she needed to use the toilet. Oh I do? And I’m like are you kidding me and I basically had to verbally walk her step by step on how to go to the bathroom and the following week I actually had to help her take off her pants. People who listen regularly, they know that she’s  gotten very combative with help. So the whole time I’m pulling her pants down and  I’m glad she couldn’t see my face, but the body language probably didn’t help.

 I was a little afraid I was afraid that she was gonna smack me, or claw me because that’s what she does when she doesn’t appreciate your help.I guess I didn’t upset her that day but I was like I’m not going to be doing this toilet routine too many times because one, we pay a lot of money for where she lives and I don’t want to do it. Two I don’t wanna get abused but you said something that triggered a thought. You know we have that mother daughter relationship and for whatever reason now, years ago I was much more negative person than I am now I, I had a person that worked for us who is always complaining.This made a statement that wasn’t a complaint and one day it’s like a third time I had heard it from him in a couple days was like why is he hearing complaining? All I’m doing is stating a fact, so I thought okay. Let me let me like self assess here and I did and I really changed the way I quotequ and quote state a fact. 

(Gayle)

I call it how I see it sports fans. 

(Jennifer)

Yeah. That’s like if he sees in that way, then obviously other people see them that way. So I was always the negative personality and my mom and I got along fine but I wasn’t the favorite of the two most of the time. Which is interesting so I’m thinking that even though she doesn’t remember me as her daughter even the slightest possibly negative expression on my face it just like triggers something in her physically. Never thought of that until we just had this wonderful chat.

(Gayle)

Well marvelous that is the thing and when people say if you’ve seen one person with dementia, you’ve seen one person with dementia and a huge part of that is because you cannot completely separate from the brain that individual’s life experiences. And  those relationships and those deep seated responses that they’re not even aware of and most of the time, we’re not aware of either it’s just something. This is just the way it’s always been  like you said there’s you know some little tweak on your face that signals and that comes from a pattern from the past. Our brains are oh lord they love patterns, they love patterns, and by the time you know you get to eighty you’ve got a couple of patterns pretty well ingrained there. You know all the whatever in the world’s not gonna undo all of that. So, that he does have to do with it .

(Jennifer)

 She talks about her husband as if he’s still alive, my dad’s gone for three years. She’ll talk about it  and again there’s a lot of words and its so frustrating like follow the bouncing ball, but it’s always like I asked her a question the other day. And I know questions aren’t always a good idea. I was getting a little desperate . And I figured it  was a question that didn’t really require any kind of answers, it was a  social question. I asked  so what are you guys up to? She asked me that a lot. And I said, are you guys going on vacation? And she said, well, we have dinner and we do this and we do that. And then she launches into we take care of the house and I thought no, he didn’t. Because he did not feel if there was paint on the walls, didn’t need the change it even though it hadn’t been painted in a dozen years and you know you do have to at least repaint for touching up and cleaning. When he died and we had to fix up their house. It was like. It was rough, but you know she’s talking about him not in really positive tones.

00:30:05 – 00:35:05

So it’s really interesting because  I get a little frustrated because it’s like can I get her off the chatting about her husband track because it’s all negative. I really don’t want to hear all his negative crap, I lived through it, I don’t need to re hear it . So it’s just interesting that you know it’s like I can see how what’s coming out of her mouth is based on deep seated feelings.

(Gayle)

 Exactly.

(Jennifer)

 It doesn’t exactly make me feel good when she told me to drop dead the other day. It’s hard having her mad at me. 

(Gayle) 

Well, you now that is I really I mean I have such a hard time, I just feel so bad when caregivers are turning themselves inside out ,upside down ,and purple. Doing anything and everything they could possibly do for this person’s well and then it’s like you horrible bleep bleep bleep. You’re stealing me blind, you haven’t fed me in weeks and I’m fed up with you. I’m GonNa live with your brother who’s the one that you know lives a half a mile away and hasnt called in six months you know. And I had to chuckle earlier when you said something about you never being the favorite one between you and your sibling but you were the one that was doing the caregiving. I’m like I think there’s a pattern in that, I sense that with all the caregivers that I know. That’s an interesting dynamic that somebody could study at some point in time.

(Jennifer)

Well  I’m the oldest and I’m the healthcare DPOHA, some of that probably plays into it. You know my sister and I are not close at all. We see the world a hundred percent differently. Which is fine. You know there I’m sure there’s other people in the world who see things entirely differently and that’s fine that makes the world go round, but it doesn’t work in family too well. She’s very much the same personality as my mom and for whatever reason they either were best friends or mortal enemies. Most of the time they were best friends and I was just the other one.There was a time my mom literally told me to my face you make all your mistakes with your first one and you get it right with the second. And I remember thinking oh the second one I’m not gonna go live on the Internet with the reasons that that was one hundred percent wrong. But I was the easy one of the two of us. Let’s put it that way. I did not give them nearly as much trouble as my sister. So I’m trying to figure out how she got it right with the second one? So that’s the dynamic that we have going back you know fifty three years thereabouts, and so it’s you know it helps to keep that in mind but I do get very frustrated and I’m sure if she senses it when you know it’s like you said, I’m like I am doing everything I can to give you a nice afternoon.

(Gayle)

 The least you could do, just work with me here. 

(Jennifer)

Don’t tell me to drop dead, job.

(Gayle)

 I don’t ask for much here. I would just like to leave here with all my skin intact and apparently that’s too much to ask. Yeah it’s tough, and that is one of the things that people you know kind of forget about in the day To day endless activity is that you know whatever patterns have been in there for decades. Just because the brain goes mush that doesn’t mean that those patterns aren’t still playing a role in both parties.So we have to sorta keep that in mind. Things in my big support group online that I see a lot is people will post something really negative about their parents let’s say and all these people will jump in and say all you know I would never talk about my mother like that. She’s always been there for me and that I’m like how do you know that this person didn’t get locked in a closet every weekend.

00:35:06 – 00:40:11

So, mom could go out and go to the Casino. How do you know they weren’t verbally abused every day? I mean we can’t make assumptions about people’s history together. It’s really jacked up when people start talking to spouses about well, you made a vow in sickness and in health. Man that I mean that they’re not even talking to me and that makes me wanna punch somebody. Or my other favorite, well she took care of you when you were a baby. She wiped  your butt. I’m like I hate to break it to you, but there’s a little difference between wiping the behind of a twelve pound infant and a two hundred pound, angry, frustrated, not understanding why anybody helping or what’s going on anyway.Those two things have zero, zip, nada. 

(Jennifer)

I’m glad you say that because I feel the exact same way, you know people say that well, you know it’s my mother she blah blah blah, the same thing you just said. And I’m like there is a huge difference between raising a child who for most of us, I realize that this isn’t hundred percent but for most of us, we know they’re gonna go from this helpless blob of human. To like my daughter is twenty eight,  on her own handling her own life. Doesnt come by as much as I’d like which is kind of a joke, but it’s fine. You know it’s like I take a step back and go we did a good job with her. I don’t get any of that with my mom. Like first off, you’re chasing something down the drain. And she doesn’t appreciate it. It’s not going to get better. It’s not going to get easier. You don’t get a reprieve. You can’t call up the babysitter and say, hey, can you watch my mom for three or four hours while I go to the Broadway show or whatever, which I can’t do right now because of  the fire. You know so, that drives me bananas because to me it’s you’re not comparing apples to apples. 

(Gayle) 

Not at all, not at all.  

(Jennifer)

 It’d be different if you’re a special needs child and somehow managed to grow up now and have to take care of your parents. Might be a little bit more similar, but still obviously that’s not really going to happen.

(Gayle)

 So it’s a whole different dynamic. 

(Jennifer)

You find that spouse caregivers have a little bit less of this nonverbal miscommunication ’cause I know some spouse caregivers okay.I know one and he and he knows that he’s blessed but man he and his wife have been-  He was in a position to do things that made their life easier and I just read his blog post today, they went out to lunch and dinner every day so it didn’t add his chore list. His focus is doing  what she needs. Now obviously feeding her as part of that but cooking takes time away from doing what he needs for her. But obviously, with you know restaurants closing to dine in now this dynamic has changed, but she’s been sweet and loving and they for nine years they’ve been dealing with Alzheimer’s, and they’ve had a really easy path. That I first off thought they must have had a fantastic relationship before she was diagnosed and somehow that part of your brain is still there because she’s still tells him I appreciate you, you have a heavy load and you take  such good care of me. I’m like I heard that once a month  from my mother I’d be over the moon. 

(Gayle)

That is a great point and the thing about brain illnesses is  it affects everybody differently and  it’s kind of the role of the dice. I had a really close family friend who my kids grew up with them. We were like sisters, me and the woman. And her mother-in-law lived with them and she developed dementia but she was very pleasant. She was never you know throwing stuff and this and that, and the other thing. Sometimes, she’d be a little stubborn about doing or not doing this for that. But you know all in all it was much easier road than the one whose father or whose husband is ready to knock their block off and

00:40:12 – 00:45:10

it does happen that people who were never like that, who never a million years would have raised their hand to someone. And they go through those changes. So the thing I always go back to is that everybody’s journey is unique. It’s based on a thousand different variables. What were your relationships like in the past? How is the brain failure affecting your loved ones behavior right now and  nobody has the same formula kind of thing. So it just you know it just makes it dangerous to assume that my experiences are going to be like your experience or your experience is going to be like somebody else. It’s all very individualized. I did wanna take a few minutes to talk about the really more advanced stages of dementia and how we communicate. Because I think even once our loved ones get into what we call word salad where they’re just kinda you know nothing really comprehensible.

(Jennifer)

 That sounds like the stage we’re in . 

(Gayle)

Yeah. It does happen. A lot of what I’ve observed and have sort of intuitively learned over the years comes from that whole idea of nonverbal communication. And one of the biggest keys is eye contact. It’s not just you know something some poet said somewhere that the eyes are the windows to the soul. They are. I would drive people crazy because somebody would be totally agitated and the staff couldnt do anything with them and I would come in . It would take me like two minutes to get them in a totally different head space. So much of that was due to shutting my mouth and using my face and my eyes. And that’s hard to do. That is not instinctive, when we want to fix something, we feel like we need to be talking. 

(Jennifer)

And asking questions.

(Gayle)

Yes. Yeah. Like what is this about? Well, they can’t understand the damn question and they don’t know why you don’t just get on with fixing whatever’s wrong. And then it does become like an infant where you go okay is she hungry? Is she wet? Is She you know this or that?Trying to decide because you know the big motto is all behavior has meaning. So people don’t go off the rails for no good reasons, they’re troubled about something and they can’t use the normal methods to communicate that to you. But the more you talk the more confusing it becomes for them. And you know, so I do an awful lot of just getting down at eye level. Making eye contact,  when I worked at the nursing home I loved it because there were cruel ladies that always hung out there in the lounge  near the nurses station and when I come in the morning. I always came in with a huge smile and ready for something wild and exciting to happen. And I would you know I would immediately go to one to one to one to one looking them straight in the eyes and those ladies had no idea who I was. I mean you know they may have been living there for five years and seeing me every day for the last five years but they couldn’t tell you who I was. But they knew by the expression on my face and the eye contact. We are used to eye contact. How do you communicate with an infant? 

(Jennifer)

You ask him fifteen questions and get frustrated when they don’t answer. 

(Gayle)

Go figure  and it’s true and when that brain goes back to that more primal function. You know you looking at a babies eyes. And something happens there, there’s some kind of transmission that happens there and that’s what we do with these loved ones. Those ladies when I walk in and look at each one of them they didn’t know who I was, but they knew something good was happening.

00:45:11 – 00:50:03

I had a friend Jin Kieran who wrote the Midford books and one of her books was called Somewhere Safe with Someone Good and that was the feeling these ladies would get. They didn’t know where they were but they knew it was somewhere good and they were with someone who was safe and that’s what we try to communicate. You’re safe. You’re here, we’re not hurried. There’s no threat here. Because anxiety is the mainstay of so many of the behaviors that trouble us in people with brain failure. The other thing that really influences me with thinking about communicating through the face and the eyes  is I’ve worked in intensive care for seventeen years before I went into long term care. And over that amount of time you’re with a whole lot of people when they’re on their way out of this world and let me tell you if I didn’t believe in you know that there’s more going on around us than we see and recognize and  understand being with so many people when they had one foot here and one foot wherever. You know by the fifteenth time you feel a sudden draught of air that shouldn’t have been there by the twentieth time you see this patient talking to whoever they see up there in the corner. Where you see the person should by all rights have been gone days ago hang on until the servicemen from Germany their grandson finally gets there.

 And then they release themselves. I mean all of these things together just really impressed on me that we have to move past this commitment to language and the obvious to communicate. One of the things that you’ll hear repeated over and over again is that even when somebody’s in a coma, they can still hear what’s going on around them and I mean there’s thousand studies that verify people who should have been dead and didn’t they come back from the brink and they can tell you exactly what was said and so on. So you know your hospice nurse says go ahead and still talk to them because they can hear it. While one of the things that I truly believe because I’ve seen it a hundred times is that you don’t necessarily need to use words out loud for that. And one I liken it to is prayer or meditation.Whatever your belief system is we’re not going to get you know there’s not to be Jim Baker walking in here in a minute so everybody stay calm. Whatever your beliefs are most people go with the idea that there’s something bigger than ourselves within the universe and the idea of praying or you know connecting with the universe with a capital U. We don’t do that out loud for the most part. When people pray most of the time it’s silent  conversation. Whether it’s one way or two way. What I really try to get caregivers to consider is the thought that you can communicate with your loved one in the same way. You can communicate heart to heart. You can sit quietly with someone,  ook them in  the eyes and just grab two minutes, one minute, ninety seconds of we have just shut out the rest of the world. It’s just you and me right here. Just you and me right here.

00:50:04 – 00:55:02

Everything else is gone. It’s just you and me right here right now in this moment. And you can speak those things from your heart, you don’t need to say them out loud in fact, you probably should not say them out loud because then your loved ones are going to be sitting there scrambling with their brain too frightened to figure out what it is you’re saying. But I have no doubt in God’s green earth whatsoever and  I’ve been a nurse for forty years. That we can communicate without words. 

(Jennifer)

I believe that one hundred percent, I’ve  been a dog owner  for my entire life. Yeah and they sense when you’re upset, they sense – the thing that cracks me up the most is every morning I have breakfast. As soon as I get up there on high alert. And  it’s like if I walk towards the bench with the basket with tennis shoes in it,  even the twelve and a quarter year old who’s got bad nerve arthritis in his  back legs, they are  like nearly bouncing up and down like Kangaroos. Oh goody we’re gonna go for a walk, like these are my bike shoes. It’s okay, it’s Wednesday. I’m going for a bike ride not today because it was raining but it’s like there’s certain things that it’s like even if it’s not a hundred percent the same pattern they know, okay, she’s done eating breakfast that means there’s exercise coming. Are we going to part of it? It just cracks me up it’s like you don’t even have to walk towards the shoes,  you might walk towards the closet, but they’re like getting the socks now . It’s like how they know all this stuff. I know dogs are dumb but Lord they’re just. 

(Gayle)

But our loved ones,  they sense these things. We sense these things with each other, one of the things I used to tell families all the time in the ICU when they’re you know do I have time to go home and take a shower and come back or is mom gonna die and I wouldn’t have been there. And I would always tell people you know you don’t have to physically be here in this room to share this experience because as people become less and less dependent on their body. Less and less dependent on their brain because they can’t depend on their brain anymore.They become more of a spirit, their spirit or their soul, their essence if you will. Comes more to the forefront and so I would tell people you know you might wanna be here if you don’t feel like you can do that then you know go down and sit on the pier where the two of you used to go fishing on Saturdays or wherever. What we tend to lose sight of because we’re just so committed to our day to day lives that are controlled by time, space, and language. There is another level and there’s another level of communication. It makes me really sad when I hear caregivers say there’s a stranger living in my house. That’s not my mom, or that’s not my husband. The reality is that individual is no longer able to project themselves onto the world in the way that you’re used to. 

(Jennifer)

That’s a good way of looking at it.

(Gayle)

 Yes,they are no longer able to present themselves in ways that were used to understanding. But the brain is not  the end all and be all of who we are. It’s an organ. It has a function. And yes, because our minds and everything else tied into that, it’s hard to separate it out. But the truth is our spirits which is where you know – Okay we’ll call it our hearts. Our hearts are where we feel love, and connection and meaning. It doesn’t matter how diseased your brain is.

00:55:04 – 01:00:00

That doesn’t affect your heart. Your heart is still in there.One of the things. I’d like to say to caregivers over and over again is they can’t communicate to you in the way you’re used to them communicating with you. That does not mean they don’t still have the same feelings. Having feelings and communicating feelings are two different things. They are no longer able to communicate those feelings about you. That has nothing to do with whether they still have those feelings. Why would we think that someone who has spent their whole life caring about us, you know been married to somebody for fifty years, why do we think brain illness would change their heart toward us? It can’t, It changes what they can and cannot communicate. It doesn’t change their heart. And when people stop and let the world fall away. It’s just you and me, eye to eye here for just this one minute. When you stop and everything else has quieted down. You can hear their heart and they can hear your heart but you have to tune into that. And that takes practice. But you know my thing always is what the brain can’t remember, the heart can never forget. 

(Jennifer)

That is very true.

(Gayle)

 And that is what I use as a slogan in my teaching. What the brain cannot remember, the heart can never forget and what I tell caregivers is she can’t communicate to you anymore but the reality is she’s in there. She knows you. She loves you. She has a sense of how much of your heart you’re pouring into trying to help her. And she loves you all the more for it. She just can’t communicate that. And when I talk about finding moments of joy, that’s what I’m talking about, those moments when your heart’s connect. May not happen every day probably won’t happen every day but they can be those moments that can be cultivated and sought out where you get quiet and let everything fall away. And you know, the eyes really are the windows to the soul and you could look in those eyes. Let go what’s going on and you’ll see something that will that you need to see.  I really believe that. 

(Jennifer)

Well I’m not gonna argue. 

(Gayle)

Good ’cause I ain’t got all day to convince. Sorry we needed a little moment of levity. 

(Jennifer) 

 And on a chuckle right there. You know that makes sense. When I, sometimes I come to visit mom and she’s asleep sitting in a chair kind of nodding off I don’t want to startle her. So you know, I sit down next to her and ill touch her knee or whatever gently, and as soon as I can tell that you’re like she’s what’s going on,  I make sure I’m smiling no way. The first thing she sees is this face that  she recognizes that is smiling. Because somebody’s startles you awake anyway. I wanna make sure to suck all that energy out. And just smile and nod. Yeah but I’m gonna try now that I have a feeling that we’re not gonna be walking around the complex or going to parks and  looking at kids. That sounds more creepy than we do,  watching the children play. I’m hoping I’ll be able to  transfer her to a wheelchair and we can do that. But right now it’s questionable. So I’ll make sure to look in the eye and just give her as long as I can because that’s really out of our norm. Giver that time and just think positive thoughts.

(Gayle)

 Yes. Exactly. Send that good karma. However, you wanna phrase it.

01:00:01 – 01:02:33

Just the connection is the important thing because those are the moments that sustain us.

(Jennifer)

 That is true. I think people are learning how much we need socialization and connection now that no can. My mom always said everything happens for a reason and there’s times I’ve been like explain the  reason for the Alzheimer’s or falling and breaking your leg or the whole world is on shut down because of a pandemic. Yeah can you explain those to me? I’m very curious to hear about that but  it’s kind of a good way to maybe end is instead of saying the whole world shut down because of a pandemic or my mom broke her leg ad  it may have accelerated her decline. There’s still those little moments where it’s like, Oh well people are learning to communicate and learning how important it is to socialize and slow down. So yeah, there’s always silver linings. I know that sounds cheesy but if we look for them we will find them. and. I say that on a day that’s rainy and it’ll be a little hard to find the silver lining because I think it was supposed to stop raining it doesn’t look like it has. I will have to go and maybe just watch the dog be zen on the couch again. 

(Gayle)

That is a beautiful thing. 

(Jennifer)

Well I really appreciate this. I enjoyed both of our conversations and hopefully we can connect again soon.

(Gayle)

 You’ll never know where I’ll turn up next. 

(Jennifer)

 Sounds like a threat .

(Gayle)

Ah well, look at it either way. Thanks a lot for having me Jennifer I, I really appreciate the chance to share my ideas because I just really have a heart for what people are going through, and if something that I’ve learned through all these years of being around can help one person and today is a very day. 

(Outro)

Thank you for tuning in again. I hope Gayle provided you with lots of inspiration and tips that you can take and use right away. Be sure to check out our revamped website. There’s lots of articles and recipes coming very soon.

 And as always I’ll be in your ears again next Tuesday.