A Musical, Emotional Memoir on Caregiving (Caregiver Carols)
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Today’s podcast is presented by Pago Pago is the easiest way for you to monetize your podcast providing podcasters with a flat rate for ad space. So you always know how much you get when you include an ad from pod go apply today to become a member and immediately be connected with advertisers that fit your audience. That’s pod go down and be sure to add fading memories in the how to do hear about pug go section of the application. Most of us are aware of the benefits of Music both for someone living with Alzheimer’s and those of us who need an emotional boost. If you’re a regular listener to this podcast, you’re also aware that I talked a lot about self-care music and self-care aren’t A New Concept but today I’m sharing with you a Twist on both abuse cycle emotional Memoir by Don wendorff is a self-help book unlike any others. The books idea is to help caregivers with the emotional aspects that they are going through written in a lyrical song format caregiver carols is a self-help book that helped the author his carry and countless caregivers Nationwide stick with us the entire episode and enjoy a surprise ending from dawn. This episode is brought to you by caregiver Chronicles an eight-week online course from diagnosis through hospice. For more information use the link in the show notes home. Welcome to fading memories a supportive podcast for those caring for a loved one with memory loss on the episode today get help managing your feelings from a musical Memoir of dawn wendorf. He discusses his emotional struggles as a caregiver for his wife Susan the book is written in song lyric form to be easily absorbed in recalled. Don shares his personal feelings such as anxiety anger sadness uncertainty sexuality and compassion. He does this to help other caregivers. I understand and better handle their own emotions Selections in the book are both humorous chatty moving informative creative and practical. I am excited to introduce today Don wendorff. He is the author of caregiver carols and imma let him finish the title of that book cuz it just slipped my mind like normal, but thanks for joining me Dom a musical emotional Memoir and you can order your own copy that doesn’t have the sticky notes. I like mine with this ticket, but you can get them with or without. I like the color of your sticky notes there pink. Yes. Thanks for joining me. And so tell me about your caregiver journey and how that led you to the book and then we’ll talk about the book a little bit. Okay. I was sort of care arranger and part-time caregiver for my father who had Parkinson’s and some Dimension with that wage and my mother who had all hymers they ended up both in in, you know, a care facility and then for many many many years seems like many many many years for birth. My wife Susan who originally was diagnosed with Alzheimer’s, you know, after the million-dollar work-up kind of stuff and it it made sense. I mean, she had all the stuff and so I was young pretty convinced that that’s what it was later turned out that hers was vascular and she had had all sorts of little mini and Maxi strokes and continued having strokes and eventually I even retired to become full-time caregiver, but first we got by with actually people from church helped her out at no charge to us single. He’s eight he’s off and then I had some hired help for a good while but it it just became too much and So eventually I retired cuz I was a psychologist and marriage and family therapist. So, you know, I was dealing with emotional difficulties and problems and issues and stuff all day long and then coming home and dealing with that all evening long and I was retired. So that makes sense. Always talk to people about putting together their care team. And that’s one recommendation is you know, you don’t always have to hire people especially in the earlier years of the disease you can you know, find neighbors friends family people in church and other things people can help. Yeah. We did all the above verse. I actually sort of took care of her by phone but you know eventually got to where somebody needed to really be there.
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And so yeah, we had a number of friends our kids, you know, we had grown kids at that point. I thought they helped out some but you have there’s more help available. I mean, I finally got to a point where I really was needing some pretty serious health and I went to the pastor of the church and I just said Steve or you know, I’m drowning over here man, you know some help you said, okay, and he called a little team of ladies together. They said okay and they wrote out a schedule and they alternated and wage. Name all day long while I was at work one at a time and and they did that for a couple of years. That’s amazing. I just had to ask I just said I need help first thing asking. Yeah, cuz I started off like everybody else thinking, you know, I can do all this I can I can handle this, you know, I can juggle 18 balls and they’ll sweat you know, yeah, I just people and I’ll do a super job at it too by the way and be perfect. Yes. Exactly. We always overestimate our ability and with this disease it’s easy because in the beginning it’s not that challenging, you know, maybe maybe you have to learn a lot more patients, right and you know, but then all of a sudden you realize you’re drowning, but maybe you haven’t put a care team together and you are blessed you you your church family helped you out and you know, that was great, but I would it was wonderful. Yeah cuz you suck your right at first, you know, it seems kind of I mean we’re used to having new issues or new things we gotta deal with that’s part of life for everybody anyway, or our kids reach a new developmental stage or whatever and you know, they’re more issues to dead. So at first yeah, but the the stress and the effects of the stress, I think your cumulative, you know as a psychologist. I mean I had families that I was a young with that had we were dementia wasn’t an issue and and I saw people get burned out so I knew very much about burned out. I could give you a three-hour lecture about burnout. I knew what it was. I knew what I should try and do to avoid it. I looked for it. I suck I got feedback from other people. How do you think I’m doing you have to come? All right. You think I’m burn it? I did all the right kind of stuff and I still got it. Yeah, it sneaks up on you. That’s what’s really interesting. And you know, we all if you get that late night call or that emergency phone call, your mom needs help or dad needs help or you know, you you notice that your spouse is struggling and all of a sudden you realize something is seriously wrong here and all of a sudden your life is turned off. Down and we all you know, I don’t I well I guess for obvious reasons. I’ve never talked to somebody that just said I’m out. I’m out. So we all step up and then the next thing you know, you know, you’ve did you have to retire early or was it about the time you’d originally planned? No, I hadn’t planned it originally, but I reached 65. You know, I was eligible for Medicare I could get you know, more retirement kind of stuff. So it became more feasible to do that and instead of paying people to do that and me burning out more. I just said, you know, I’ve done nothing let me I’m going to retire what happens with a lot of spouses spousal caregivers is they end up retiring early which then of course affects retirement benefits and yes, it’s just oh, yeah. Yeah. It’s it’s a it’s a problem. Well and for so many people maybe men more than women traditionally but more so everybody suck. You’re who you are and your social life and your identity and all that kind of stuff is tied up in your work. And so there’s four many people just a major adjustment and maybe a lot of loss things that you got to grieve relationships. But you know, the thing the good things about I mean work is work, but there were some good things about work and I liked what I did I believed in what I did so, you know, there was an adjustment of all that, you know at the same time. So you said that they thought it was Alzheimer’s it turned out to be vascular. Dementia. I’m assuming you’ve heard that they are very close to the blood test. That will determine if somebody’s got Alzheimer’s right right that excite you or do you think that’s a scary thought would you take the test if you were dead, you know, that’s an interesting thing and I’ve done the 23andMe genetic kind of stuff. It’s interesting the stuff that I’m at the higher risk for isn’t in my family at all. You know, I’m not at a higher risk for Alzheimer’s I don’t have the apoe4 jeans certainly not two copies of it people real different on all of that. I thought I’d be okay with having that test myself and knowing I would want to know Linda my my wife now would would not and we have a very dear friend who lives in San Diego with Jamie Tyrone who just wrote a book about the traumatic experience.
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She had with learning her genetic status, which is she has two copies at the apoe4 gene, which means her risk of developing Alzheimer’s at some point in her life is like 90% Yeah, I mean it through her into a major tailspin and and it’s it’s like it’s like people to talk about when they’ve had cancer, you know, every little thing you get you get a little funny feeling here or a little funny Mark here and instead of saying oh, well, that’s just cuz I’m older than dirt. Oh it is dirt road. You know you say this is it it’s the big see it’s got me. Well, okay you do for some people and they don’t want to know I think I would I would want to note. I’m not exactly sure why cuz I would change anything about what I’m doing. I’m already doing have been doing all the things that are recommended and now showing up in the research as being useful for lowering your risk of every kind of dementia. Not just Alzheimer’s but every kind of dementia important because it lowers your risk for every major disease. I mean the stuff that you supposed to do. Hookah thought that healthy living was given was good for you sell fake, right? Yeah exactly. So I’m doing all those things and in fact Linda and I well I did before the virus. We went around to local congregations here with a dementia-friendly, Alabama Grant to talk to Faith communities to get them educated. I mean we can log If we want to give your congregation to talk about Alzheimer’s right? Yeah, don’t call us. We’ll call you. You know, nobody wants to talk about Alzheimer’s we will talk about brain health and about healthy living and and Thursday. It’s the same things that you do for lowering your risk for every major disease. It’s the things you ought to be doing for the person that you’re taking care of with dementia because it can give them a better quality of life. You know, it’s it’s not a an absolute guarantee or anything but you know, so if I knew what the future would be it probably wouldn’t change what I would do, I’d probably buy more banjos. Probably would I would take it because I would like to be able to plan ahead. We’ve had conversations my husband and I he knows how I feel like I’m kind of all for being able to go to a lawyer go to a psychologist in the doctor basically says I’m in my right mind and if I should get Alzheimer’s if I get to the point where I cannot participate in my own daily care It’s time it’s time for the permanent sleep, which I know is illegal, but at this point I’m fifty-three. So I’m thinking you know, my grandmother is a hundred and two. I got a few years ago. I think wow. How long to yeah. Nobody in my family has lived that long. Well, neither my parents got to a t so you never know if I ride. I ride bikes. So I you never know. So I’ve often wanted to make it to 90 that would have broken the family record for me and and he died the month before he was ninety week now and that’s all right. We gave him in utero credit that works months. Shy is a month. I come on, you know, that’s pretty dang close. I mean I was a month premature. So where do we start counting? That’s true. They they try to tell me my daughter was a month early, but she was six pounds full head of hair long fingernails. I don’t think she was a month early. It doesn’t sound like a doesn’t know. They just I think it was just their way of saying well we calculated wrong. I mean they first name. At most she was two weeks early cuz then they you know, they give you a due date and then they’re like, oh no wait and then they push it out another couple of weeks and maybe it’s come when babies come. Well, I was a twin I was identical twins so that that helps wire guys and undiagnosed when they’re about to roll mom out of the delivery room. I don’t remember this exactly but they were about to roll her out a delivery room and the nurse’s office. No, no, she not through yet. That’s there was a plan ahead. Fortunately cribs are big enough for two little babies for a while. That’s crazy. Yeah, so tell me how you came to write caregiver carols and you have to be yeah a musical emotional Memoir. You think I could remember that too that have done too much already today? I had already written off before we really got into the whole thing about dementia. I had already written a self-help book sort of a self-help marriage manual.
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Okay, my specialty wage and family therapy. So, you know over the years from my clients and mostly from making mistakes in my own marriage. I learned a lot about how you can do a good healthy marriage. So I am in a book and I don’t basically like self-help books. I mean, I hate to tell you this but I don’t I can’t get past about page twenty-five and and any of them they just seem to be dead. Pata Tim, it’s like yeah. Okay, right man. Sure. I should do that. Yeah, I’ve got eighty hours in every day. I can do that. So I wrote it being a musician. I wrote it down in song lyric form, which is basically sort of rhyming verse. I put some of them actually tunes and you know run out cords and stuff and record a couple of them, but mostly it was that format. So, okay. I started kind of writing down Fox and stuff as my caregiving gotten going particularly with Susan not so much with my folks, but particularly with Susan and I started noticing all the different things that I was going through the motions. I was having the reactions I was had and the behavior that was resulting from all of that and and I started writing all this down and not went back to that song lyric rhyming verse format. So it was a very creative kind of Enterprise in addition, but I idea of the book dog. Was to help other caregivers with the emotional kind of aspects of their caregiving there’s all sorts of stress. I also had a lot of physical stress cause Susan with all of her Strokes I wear. She couldn’t do anything with her hand. She could only walk with my muscling her. She was almost flying so, you know, there are a lot of other fit they were physical stresses to it pretty hard on the back. But this way more in terms of the emotional stresses, but what I found that too is as I was writing them and I would share a lot of them with her lips my ear bud fell out don’t you hate it when you’re down until it was a catharsis kind of thing for me. It was enjoyable for her or something. We could sort of share some of them. She didn’t like we talked about if you want but it was very it became a very nurturing thing for my own emotions just to kind of get them out but also to put them out of their outside of me where I could look at them and I could say oh and I can show them at other people and they would say, oh, well, you know why you did that and he’s dead. I dude you know and but and it was a creative thing people, you know, an artistic sort of thing. I’m not the greatest poet certainly not the greatest songwriter in the world off the tough subject. And so it I actually got a lot of insight it was almost like going to therapy, you know sort of with myself once I would put them out there. I have to think about it. You know, how what am I going to rhyme with this kind of thing? I I could reflect about myself and and see some things that I hadn’t seen and then when I actually started turning it more into a book I showed it to a number of my colleagues and other people and got feedback and they would say and this this is what’s going on with that. You know, yes, you’re you’re getting angry so much. Well, that’s cuz you’re so stressed or sold anxious your you know, whatever whatever it was anger is a wonderful emotion for covering up all kinds of stuff men are great at it women wage. Bad at it but I mean guys we’ve worked at to a fine art, you know, I really through writing the book is where I learned that a lot of my anger and I was going through a lot. I was getting angry a lot and and acting real nasty and real men and real ugly. You know, there was it really was bad. I saw it was grief. Yeah, Victoria grief is rough some of an anticipatory some of it for what was already going on. What I was losing in terms of as she lost abilities thought I lost the relationship as it was, you know, we still had an ongoing relationship and she was able always to to write until the very end to be able to converse and to know who I was and so I didn’t have that aspect of it. But yeah, there was just so much I was losing in my life because of what was going on all that and I learned that really from writing the dog. But it also gave me a little something that I had with me all the time. That was a little safe place a little Refuge that I could just walk into and so in the middle of some kind of drudgery, you know what I’m giving her a bath or clean dinner up or toileting stuff or you know, whatever it is way.
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I could kind of go into that little spot and it kind of became a self active thing as I would be driving or I kept running up. I’ve always been a runner. I kept my running up and I would have a little things just pop into my head. And you know, there are many times that I ran four or five miles and couldn’t tell you anything about where I ran or anything at all, but I at the end of it when I got in the car, I wrote down to verses and a chorus. So it’s a neat little safe place to go to. And and that was kind of neat. I’ve I’ve found I get a lot of creative ideas when I’m riding my bike. Yeah, which is a little more dangerous cuz you gotta pay attention to where you’re going. Yeah. Yeah. Yeah, and I don’t do the running any more. Mostly it’s hiking now, but it’s the same kind of thing. It’s one of those deals where some places you have to be very careful and you can fall and often dangerous. But other times you can kind of let your mind go and get into a meditative mindful kind of state which is a very helpful thing for managing stress. But I think creating is also and you don’t have to be good. I mean I am not the world’s greatest musician. Willie Nelson is the world’s greatest music according to Susan. Okay. I find it’s interesting cuz I’ve always been a creative person and one of the choices that I’ve been handling this pandemic of which we lost my mom at the very beginning and we haven’t been able to do a celebration of life and there they when I feel guilty cuz it’s like well, you know life, you know, you died life moved on blabbity blah, you know just seems very flippant and like whatever but that’s not really how I feel and right so I’m actually creating greeting cards and thank you notes and stuff by hand and I like hand paint them and I don’t really know if they’re great. But it I was looking for a creative outlet that allowed me not to clutter up my house cuz you know, you can only have some quilts or blankets or paintings or I’m a photographer and there’s only so many walls to hang things on and I know that you mean there’s a Rouge That’s good. I learned something. I never thought about hanging them on the ceiling. Maybe that’s so you know, it’s like I need a creative outlet but I don’t want to pull up the house. And so the greeting cards it’s like basically you’re using up a lot of the supplies. So I had never thought of it as a well. It is a stress relief for me, but I never thought of it as a stress relief for the general population. Like I can’t imagine my husband doing it cuz he’s not a creative person. Maybe I’ll have to 6 maybe. Yeah, he might have to find his own way about that cuz like I say life doesn’t have to be great. I mean, I’ve been playing music and Performing for since I was in in high school and I’m a pretty decent performer. I’m not a fantastic musician, but you know, what is the purpose of the thing in the first place? What what are you trying to do? You know, am I trying to compete with Louis Armstrong that’s going to happen know. Yeah. Yep. Probably not a good idea to I mean, it’s just share. It’s it’s to share feelings is to share fun. It’s the share pleasure to you know, it’s a connecting the thing. It’s a a shared performance art kind of deal. So it doesn’t have to be great and and it’s funny you talk about making your own little hand done that hard because one of the things one of the pieces that I wrote and in fact, it’s one of the few actual songs I’ve ever written and recorded and I recorded it just took Susan was about one of the things that really caught me when I first met her in college, she would paint just little cute little things little sayings or Little Flower or rainbow, you know, some kind of cute little thing on Iraq that she would find or a piece of bark. Did she would find or one of her favorite media was rusted Tin Can Lids. Hmm and and she would you know send them to people that they live far away or she would leave him around where somebody would see him and it was a surprise and that really characterized something it would became a metaphor for me about her about who she was as a person. It was like the the Shaker him titled simple gifts. She gave little simple gifts.
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She was not ever going to replace Van Gogh or Monet, you know, but she was very artistic and very creative and and her own show ended fabric arts and stuff like that. But that was part of it was one of the hardest things for her about getting dementia was losing the ability to give to people in the ways that she always had. Of course, we all knew that the way she always gave two people was by being a very caring and supportive and empathetic and compassionate and you know, I’m not giving kind of person that it she didn’t have to paint anything to do that. She continued until her I mean when she was in the hospital dying she was asking the nurses if they were tired if they’d had a long shift and was she being too much trouble and you know, she was taking care of people while she was dying. Okay, so that created thing though. That was where I started off. This ramble led to a song called painted bits of bark and stone and 10. So you want to play that one for us. I can play that one for you. I haven’t done it in a while or practiced it in a while. So it may be kind of rough, but it’s interesting. You know, I was telling you the other day how I met my present wife Linda Linda Everman who is a real big Alzheimer’s Advocate images of Fanatics. She took care of her father who had Alzheimer’s and her mother had vascular and and her late I get mixed up her phone call ahead faster her late husband Richard. She took care of for like fifteen years or something, but with Alzheimer’s at any rate. She the way we met was thought she was KO editing a book with a number of other people a book of meditations and prayers and Reflections and a multi-faith kind of thing for caregivers home. Seasons of caring is the name of that and I was the last contributor to that book and that’s how we met cuz she was assigned to edit my submission and my submission was that poem painted bits of bark and stone intent and I I make a big point of it because I think one of the things that’s very important in the middle of the caregiving when things are so stressful at least in my experience, you know, I was perceiving Susan as being oppositional or resistant or you know, giving me a hard time about everything and I was getting very angry. You know, I’d say okay, we’re going to stand up and she would say now know three weeks from now. I’m just giving you a notice. Do you know? Okay, push put your feet down on the floor right there in front of you on the floor know put them on the ceiling. I don’t care where you put put them someplace and let’s stand up, you know dead. I was perceiving her as oppositional and and and this kind of stuff. And it was helpful then to be able to step back and reflect and say wait a second who we talking about. Is that who she is? Now that is a good point. That’s that’s not who she is. You know. Yeah. I mean it’s harder for her to be her and to do the things that she wants to do now because there’s so much other stuff. She’s got to deal with I mean, she’s bound to get walks. You gotta feed yourself on and on and on she can’t do all this stuff. So it’s very hard and and she probably had some depression and and plus the effects of the disease itself. But she still was herself there still was that person and this is the whole idea of person-centered care that we now talk about so much as who is that person and how long you still connect with that person? How can that person connect? And and the idea today? Is that even with somebody who is essentially mute who can’t really have a conversation may be doesn’t even really know who you are. That person is still in there. The soul is in there somehow or other you gotta find some way of making some Connection in angle be the connection you had before Now that’s the toughest part. That’s the toughest part is not going to be the connection you had before but it’s amazing what can happen. I see it. So often through music why I’m such a nut about the expressive art. I mean I play for a lot of respite care programs and Adult Day Care programs and stuff like that try and do sing-alongs and stuff and I’ve had people participate effectively in sing-alongs singing and dance and then doing the lyrics and you know, all the little hand movements that may go with the song or something who are mute. Who haven’t spoken to anybody in months? Now they say music really touches way deep down and I I’m sure you’ve seen the alive inside.
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Yeah. Oh, yeah. Yeah. It was a box of Kleenex and watch that if you haven’t it’s a wonderful wonderful thing. Yeah. I love Dan Cohen’s programming. Yeah. I talked to I’m not going to be able to remember his name, but the guy that was was active in working in that program. He was also a musician and he knew some pretty probably be level musicians here in the northern California area. It was it was interesting. I mean, there’s a movement, you know, that really came out of California. It’s spreading now all across the country where they get together old musicians who have dementia they may not be able to have a real great conversation with you off but you put that on in their hands and you get some people you may have to have somebody to turn the music Pages or things like that, but there are people who who maintain some of that ability for dead. Basically, and it’s not just muscle memory. I’ve looked into some of the research on all of this kind of stuff but music in particular is true for the other expressive Arts also, but music and a particular Taps so big an area so widespread an area in your brain. It’s a very complex system with connections all over the place and I think that the same kind of thing happens with dance or drama or art visual art and and people will start saying things or maybe bringing up some memories and stuff and it’s not going to last forever. Yeah, but in the moment that they’re they’re involved with it, you have some connection and like I play over in Tuscaloosa with for an adult day care center that called a bringing art to Life program doctor. Danny pot. Susanna religious in Tuscaloosa has that program where he pairs University of Alabama students who are taking home intercorse with people who are in this adult daycare center all of them have to mention but you know, you get that pairing kind of going and may create relationships. You create wonderful feelings in the moment and everybody believes feeling happy and great and I asked anyone time. How long does that last you know is that last for a couple hours or two pieces of the last a week? Wow with some people we just long time. Yeah or days, you know that they’re they’re just more they’re they’re just more with you dead. That’s really interesting. I mean this whole thing and dementia is kind of weird. Anyway, Linda had the experience that both see if I got this right both her father and her late husband Richard who hadn’t been able to talk to her for months and months on her deathbed said, I love you. Oh wow. Now my mom walked and talked Up Until the End other than she fell and broke her leg on March 8th and passed away March 31st. I think the the broken leg off the last straw, you know how people break a hit you healthy people break a hip elderly healthy people break a hip and then they’re gone in two weeks. Exactly. I had noticed in like February that we were sitting outside. It was a sunny day. The sun was really warm. There was a kind of a cold breeze so it kind of kept it pretty mild. I mean not probably in North Carolina a year in Alabama, Alabama, you could buy sit outside in February also, but we’re sitting out. Yeah, I can sit outside in short. I know some people don’t wear shorts and I I’m a multi-generational California. And so, you know, I don’t like it less than seventy-five or eighty as my home. Well, it is with the next grade, but that’s me that we were sitting there and she I realized that she was probably hallucinating cuz she was talking about some lady and she was point of tree. That was probably maybe about a hundred feet away and it what I found very interesting is my husband who hadn’t seen my mom for a weeks. He kept saying I don’t think Mom’s going to last as long as you thought I mean her mom passed away with vascular dementia at 91 and my mom had early-onset Alzheimer’s right? And so she was she started on that Journey much younger than my grandmother did and she wasn’t diagnosed until 2011 and through talking to caregivers and researchers and everything that I’ve done over the last two and half years, you know, people are like it’s usually two to ten years from diagnosis and I’m like, okay. Well she was diagnosed in 2011. So I figured she had two or three years left wage. Well, then she typical mom. She’s like So typical mom she you know, I figured she had two or three years and she she was like, nope.
00:35:07 – 00:40:06
I yeah, I want to do things my own way. And so, you know that’s been the beginning of my ear The 20/20 is just been not I saw a shirt that I really should buy but it’s not really my style. It says 2020 and then underneath it as the stars and it’s only one star is filled in and it says do not recommend I could feel that one but I’m not going to yeah, I mean that’s that’s awful new for you. You’re really still almost probably in in shock. You got a whole lot of grieving left to do and of course any of us who really lost anybody that we love know that grieving is never took over. I mean, it changes it evolves over the years but in some ways you never totally finished with it and it’s not only grieving. It’s also rebuilding because wage Somebody that you have a close relationship with dies part of you dies part of you is relationships, you know, carry all of yourself around inside your epidermis. Some of that page is the relationships that you’re in so there’s a lot of rethinking and rebooting and retooling and and recreating of of yourself, too. So, yeah well and all that song challenge when the care home that she was in was really great. She came out of the hospital March 12th. I started the 12th the 14th the 16th and on the 7th if they said oh my God, this virus no more visitors. There’s locked everybody out. Right and I did not see her for two weeks, but the two days before she died. They called off said she’s not doing very well. We think she’d do well if she had a visit from you and I’ve said this multiple times I said, thank God because I said I have sheltered in place I have song. Home and I was about ready to storm the gates because I was I was really concerned she thought it was her best friend and I was concerned that she would forget that relationship and then she would not trust me and she was being very upset about it was like I pictured it being really terrible. So I saw the caregivers the you know, the the ones that worked there the day before she died the day she died cuz we did they did call us and I don’t mention the name of the place yet because ten of us ended up outside her room the day she died and the poor executive director was like trying really hard to get rid of us but not but in a really super polite and positive. Yes, I don’t think he expected all ten of us to like all end up there at the same time. We didn’t either so they were what you’re talking about brings up the whole thing with covid-19 all that brings up some really huge issues particularly for people with dog. In China or the people in care facilities because one of the biggest health risks that most people don’t even recognize as a health risk for every major disease particularly wage mentioned and for worsening your situation just lonely yes isolation and loneliness it’s epidemic in our society and people people are not even remotely aware of that. So what do you do about people we know a number of people who are in care facilities and you know, we’re relating to them long distance by phone but a loneliness is a horrible horrible problem and and you can die from from loneliness before I forget about it. You you were talking about hallucinations a minute ago, and I wanted to say something for caregivers. They may not be aware of you can have hallucinations with some kinds of Dementia. There are dozens of different kinds of Dementia. Okay, and they’re all different and everybody’s individual. Dementia is a little bit different too but dead. Can have hallucinations but you can also get what’s called delirium from a urinary tract infection or from the pneumonia, you know, I used to be able to tell when my father had a urinary tract infection because from one day to the next I mean, he’s just crazy as a betsy bug that that I’m sorry. I don’t that’s a technical term that we learned in graduate school. She was disoriented and confused and you know, obviously not thinking clearly at all and you get him on an antibiotic and in three days he’s back to being pop. It’s funny cuz Mom my mom would have issues and the Care staff would be like, oh, I think Mom might have a UTI and the first two or three times I had rushed over to the doctor and she was at the stage where the first time I they’re like, well, do you think you could get a urine sample from her and I was like, are you kidding like okay, you know, I’m an adult I can try. I don’t want I could get a bloody nose or well, I’m just thinking yeah, like you like anybody wants somebody else that close to their genitalia.
00:40:06 – 00:45:11
It’s just like it’s just how we are raised in our society to just be all and if we hanging out and that didn’t and then they said well, you know, she has a p a little bit and then you want to catch the Midstream and I’m like dude I can’t hardly do that. There’s nothing wrong with my brain. It’s just once I start going, you know, by the way, that’s one of the one of the things that I wrote about it in the book was the whole business of dealing with them. Somebody else’s bladder issues and poop issues and snot issues and bloody nose issues and all that kind of stuff and I put as much humor of these things as I possibly could cuz a little you know, a spoonful of sugar humor makes the medicine go down better. Okay, so and and humor automatically gives the person perspective that’s true. Humor is being able to sort of step outside or above something and look down and say oh that’s weird. So I put a lot of humor in it. That was one of the pieces that Susan didn’t like very much that’s interesting. Well because it was so personal it was about her poop and her p and her, you know, it was about her kind of stuff but I learned to deal with all of that the worst part of a dealing with all of that is just the idea of dealing with all of that. But you know, it’s not a whole lot different once you get into doing it you just do it. It’s just something else you gotta do. It’s not that different from having infants true. Yep. Was cooperative. But yeah, maybe yeah, I think my mom knew that that stage was coming. She was having trouble eating I wasn’t aware until the very end that the caregivers had been feeding her frequently, which I have mixed feelings about and I have somebody I need to talk to about her husband had cancer and Alzheimer’s and in his office and Care Homes. She told them not to feed him. Well, I’m like he didn’t starve to death. I know that much so I gotta I gotta find out how you know did he just do finger food or did they gave him stuff to drink? I need to I need that answer because I planned on talking to her about my mom. But like I said, mom had her own plans. Yeah, but like I said, you know Mom, I think my mom was like, oh, yeah, we’re not going there. I’m out which thankfully because she really really hated being helped and I kept trying to find ways of helping without it looking like home. Right, she would just I’ll never forget the day we came back. I always took her out to the park or wherever to watch kids always joked that we were the creepy old ladies watching kids and Thursday we came back and she needed to use the restroom and she was wearing the depends. And like I said, she was completely mobile and she sat down she did everything she needed to do and as we all have occasionally she’s trying to pull the depends up the tow gets stuck in the hole. Now. We’ve all have this issue. Yes, then they’re like, it’s a regular problem for all of us and I knew if I said anything she’d get angry. So I waited and I said, let me know if you need any help cuz I’m always here to help if you want it and I just kind of Visually disappeared from her line of sight I can see her but she couldn’t really see me and she’s struggling and muttering and I don’t know she was just and I thought this is going to get really bad. So I finally went over I’m like I’m going to bend over in front of her and I’m afraid I’m going to get whacked or something and I’m like, oh, it’s your toe is stuck that happens to me all the time like quickly fixed it. So her tone was not I think you scared the dog the ring chime just Ding-A-Ling. My phone must not be on mute home anyway, so I went over and I bent over and I said, oh you’re you’re silly tow is stuff that happens to me all the time. And I I basically unhooked her toe and like backed up. Like I knew I was going to get smacked and I didn’t and then I just I walked out of her room and I let her finish everything and she comes in her room. She’s I hate it when people have prayer and she was real young. Angry and I was we had just come back from my house. I was exchanging her warmer weather clothes for the cooler weather closed and I’m just hanging him up and I’m like, oh, okay, whatever but she stops out of her room and about like five minutes later. She comes back. She goes. Oh, hi. I’m like, oh and smacked me, but I knew there was just times like you try to help her and you try to do it in a very, oh, no big deal kind of man. Yeah. Well, you just touched on a whole a whole lot of stuff because I mean what I’ve heard from what you were just talking about there is some people it’s very hard people who have been very giving people sometimes don’t know very much how to receive health and everybody is real different about that.
00:45:11 – 00:50:03
I figured that my father who had been an army colonel and then he was a full law professor. You know, he’s yeah, I mean he’s used to being sort of wage. Top of the Heap and and he I thought he was going to be pretty difficult and he wasn’t at all. He was very very gracious about everything. I did to help him very very thank full of everything was real cool. But it also made me think about the ways that you you know that you were trying to do that to sort of preserve her her sense of dignity and her sense of Independence and being able to do something meaningful and and functional and productive and and on her own. I mean it reminded me when my friend. I was on that Nanny Parts took his father to the caring days daycare center where he learned to do art and then a caregiver, I mean, he’d been a sawmiller all his life. He never done anything crazy. Just stick in his life. He ended up being an artist. And there were people there that taught him how to do all that. But if if he just said Dad we’re going to take you over to this Adult Day Care Center. It’s full of nice people with dementia. Nice people who will take care of you and do everything for you. Yeah. I imagine you saying that to your mom won’t be but you said Dad. I want you to visit this place with me and looking around when I was in there the other day. They got a bunch of stuff that needs looking into they got a bunch of stuff that needs fixing and could be kind of tidied-up and stuff. And and would you mind taking a look at all that? For helping them find a way to have still have a purpose and feel useful as important of an Insight on your dad. You said it was a full Colonel and then a law professor thought you had people that did things for him underlings for lack of a better term support staff was probably a better term. He was used to people doing things for him. Whereas like my mom was very independent. You know, she stayed home. She raised my sister and I she got fed up with my dad at one point and and went out and got a part-time job on her own and then he threatened to retire and she was like, oh you’re not going to be in my house 24/7 so they bought a one hour photo lab together. My dad had done photography on the side like my whole life and so that ended up being a family business so she had, you know her own way of doing things, but she never had Will that did things for her she was always in service to my dad or my sister and I or our clients or whatever, you know, the women service organization. So she was always the helper. I’m not the one getting the help. So I think that’s one of the reasons that some people when you think oh, they’re not going to that’s going to be really tough and they’re easy and then you you know, my mom, you know, she raised kids were given a thought. She would have accepted some of the help and you know, when my I think when we first moved her into the memory care, I made I talked about how nice it was to be retired. Need people that were cooking for you and oh, isn’t it? Nice. You don’t have to put up with Dads Cooking anymore cuz as her mind got bad my dad who was a horrible cook and a horrible. She took over and she would she would complain, you know, he didn’t have patience. So he’d like fire up the burner too too hot and so things would it was just bad. It was all bad. It’s just complain about it. So I would I would call it. It’s an issue and it’s a learning curve. I mean most people who are who are dealing with some kind of dementia. I mean just like wage when the caregiver before well, they’ve never had dementia before so it’s a learning curve for them too and they’re struggling and they’re just trying to do the best that they can with Susan and about the whole thing. I’m feeling like she couldn’t do anything for anybody. Well she couldn’t do anything for anybody the way she always had cuz she couldn’t paint she couldn’t see she couldn’t quilt she couldn’t she fix food for tons of people? Okay. She couldn’t do any of those kind of things, but what she could do was give them the blessing of giving to her and taking care of her giving and receiving are just different parts of the game. Same thing and it’s a blessing to give the gift of receiving well, and so I was able to remind her of her own belief system on that that God you are giving something you are blessing these people by letting people help you and take care of it. I wish I had known that that thought process before Mom got really the last 10 months of Life were really challenging. She just kept getting more and more obstinate and combative and frustrating.
00:50:05 – 00:55:10
Yeah the last visit I had with my mom she refused. She didn’t know who I was at that point. She refused to to have a visit with that’s much of this involves training and and you know with with staff it’s like the the having things done for you people learn how to do things for other people in ways that help them preserve their autonomy and their dignity. You know, I’ve been talking with a friend of mine who’s 91 and and he’s in a care facility and job This twenty-three year old little girl comes in and he has to strip naked and she bathes him. Well, there are ways of giving baths to people that preserve some dignity. You can say here. Let’s put this washcloth over these parts and you help me you watch this part and maybe you may have to guide a hand or something but a lot of it is training and a lot of it is is empathy. I mean that’s part of what I had to do with Susan particularly was to put myself in her shoes and say what is this like whatever it was this action or this thing? We’re trying to do or this page and read this emotion. What what is that like from her point of view? I know something about what it’s like for my what is it like from her point? Because she’s responding out of her point of view. She’s not responding out of my appointment. Yeah, yeah part of these things that I remember I talked about I saw her is resistant and oppositional and all this stuff what finally I was able to ask her, you know, when weren’t in the middle of a battle about walking down the hallway or something. I was able to ask her and what she said was that she’s afraid all day long. She’s afraid of every thing she has to do everything causes her fear. She’s either afraid that she’s going to fall. She’s going to hurt herself. She’s going to make me fall. She’s going to offer me. She was some of that that I saw as a resistance was her protecting both herself and protecting me, which if I mean, that’s who she was, you know, wouldn’t that occur to me? Well because I was so stressed and I was burning out and you know, I needed Needed something to wake me up on all that. It’s interesting cuz my sister had mentioned to me that my mom was always telling her I’m afraid I’m afraid I’m afraid and I thought that was that’s interesting cuz she never says anything like that to me which is not entirely unusual because my sister and I are extremely opposite people. We don’t see the world the same way. I’m not even sure my mother raised us the same way if that’s I mean you cannot get much different and my sister always went with my niece who is a sophomore in high school at this point for High School home distance, wherever that may be and I always thought it was interesting that my sister, you know claimed that I’m not denying that that Mom said that to her I don’t I never I never heard it. So I find that interesting that you finally got that out of her dead. And I know my mom was combative with my sister, but it’s just well, you know, it’s different your relationship. I don’t care how much you are alike. I have an identical twin off my relationship with my mother was very different from my twins relationship with our mother. By the way. She remembered me longer than she remembered him. What’s his right in that? We’re we’re identical but twins can be kind of competitive it to me. It meant I won but what I had a number of caregivers tell me what Susan was that she could be very different with them when I wasn’t around which is why it’s so important, you know, not only does the caregiver need some respite from the person they’re taking care of to be able to charge the batteries and rest and get some things done and all that kind of stuff. It works the other way around to they need to break for you. Yeah, that’s true. Yeah, and you know, we tell ourselves. Yeah, but nobody else can log. Know how to exactly how to do it. Nobody else can do that. It would take me forever to train somebody how to do it. You know, I do it perfectly. They don’t have to have perfect care. Now and you know cuz they don’t they’ll be fine. They have to have good enough care. Nice. It’s kind of like gotta keep them alive. Right? Yeah, and and and if you took care of the basic needs and stuff like that, but it doesn’t have to be perfect and and they may benefit from the respite just as much as you do. It’s part of why I I can do the respite care sing along kind of things that I do cuz everybody needs brake now, that’s true and you probably benefit a lot from the performance. Yes giving and but you’re also you’re giving to yourself by performing and you’re giving money to the people that are there which kind of segues me into you performing the song Because of 10, they’re hated bits of bark in Stonington.
00:55:12 – 00:59:41
That’s I mean my husband laughs it’s not quite as much because I’m mostly retired. Thanks to this virus from photography. But I would collect the weirdest from the strangest place. We have a a our outdoor table is made out of wooden bleacher seats and everybody loves it. Nice. Yeah, that sounds kind of cool but it’s really cool. Cuz there’s like there’s a heart carved into one of the seats does Aly loves Keith, you know, and it’s just I see beauty in weird name is two pieces of what most people think is garbage or junk or whatever and I I see the artistic potential and it makes him crazy. He’s very glad I don’t drag that crap home anymore. No doubt. There’s even a term for that’s found art. Yeah family. That’s perfectly legit. Absolutely. I mean that’s what photographers. Do you know that you see something and you see it through an artistic creative photographer. Rye and painted bits of bark. I don’t intend I’ll leave off the instrumental opening and ending and break just to get a little faster. She won my heart in college when she lived across the street a room mate was a friend of mine who thought we should meet. I like to look some kindness, Well, as you’re painted Gibson bar-bq Stone and pin I’d leave the class each morning. Come back again dark thought you’d left glove note paid it on a piece of bar or maybe on a shiny rock gods in her pain in the ass. She softened chat on campus. Who when I studied the factory when she leave at opening up to see them more pain and bits of stone and pin. Grow old along with me. She wrote The Best is Yet to be that Browning poem. She would quote proof truth to her and he tested such a little home Lifetime Love Again from dated bits and Barton Stone and we married raised two sons shared together. Thirty years wage our health slipping fast the end of her life nears. So it’s my turn to care for her and may I know that I must want to go release her from my heart left Presents stop our past so our forever love and start, but I am I treasure off I was awesome. All caregivers should be able to have an outlet like that. Who knew a banjo and some inspiration could result in a self-help book for caregivers. Be sure to check out Dawn’s book caregiver carols a musical emotional Memoir Thursday link to Independent booksellers in the show notes. I’m still amazed at how many caregivers use their Journeys as inspiration for tools for other caregivers. I hope you enjoyed both conversation as well as Dawn’s tune while I’m over here hoping I do. Hope you’re following me on social media. It’s one of the easiest ways to share your favorite episodes with both caregivers. You can also share via most podcast player apps, but however, you share our information. Please know that I appreciate you tremendously fading memories is a supportive podcast sharing informative and inspirational conversations with other caregivers, and we can’t help if you keep us a secret. I’m your host Jennifer Fink and I’ll be in your ears again next Tuesday.