Show Notes
Let me introduce you to a dear friend of mine, Jakara! This woman is one of those people you honestly think wears a Superwoman cape – like a real one. I thought caregiving for one parent was hard while still being young, working, having to manage your own house and your own life – but try doing that for BOTH of your parents. Caregivers are a population of people that are often overlooked and are often unsupported and I’m so grateful I got to have Jakara on with me to share what life looks like for her, the tools she’s found useful and she also gives some really amazing resources for those people who are going down the road of dementia and/or Alzheimer’s from someone who’s been up and down that block – there are some secrets everyone should know!
Transcript
Hey guys, welcome to the love your life with Misty. I am excited for today because I actually have one of my favorite humans on the planet with me. I have lots of favorite humans that she’s like my most inspiring human I think because of all the things that about today, but I also get to have her as my and sheet while I guess she’s not really my neighbor so much she’s kind of still my neighbor and she comes with me on lots of my adventures. She is one of those friends that it’s kind of up for anything and I can just call her and be like,”Hey, Chikara I totally want to go do this better go do this. I love it. I love it. So I’m excited to get to share her with you guys today because she has such an amazing gift bottled up in her and in a way that she is able to kind of walk through the world with things that would probably cripple other people. I know for myself being a caregiver, well on a team of caregiving people anyway, for my mom was hard enough I couldn’t after having to do that with two parents so I am excited to bring the Jakara Hubbard. I am excited to have you. Thank you for popping on with me.
Yeah, of course, anytime. My pleasure on this nice rainy day. It’s a perfect, cozy day and have my blanky.
I totally get you. So before we kick everything off and really get into all the things about your life and all the amazingness, tell me about your morning routine what does that normally look like for you?
A morning routine during the week is I’m up at 5:30. I usually make my coffee the night before because I’m an iced coffee person. So alarm goes off at 5:30, I have my little dog little pup sleeps with me, so as soon as the alarm goes off he’s pouncing on me on my chest on my face. He’s licking me. He’s ready to go. He knows that it’s time to get up go to the bathroom, eat something downstairs. I take care of him, as you’ll learn, I’m addicted to taking care of everything else but me. So he comes first he’ll get to go outside. He’ll get to eat. I’ll grab my coffee out of the fridge go back upstairs and catch up on the news and have some coffee in bed for maybe five, ten minutes depending on how long it takes little Papa to squeeze out a little poop sometimes it’s a rough morning. Sometimes they’re really easy. He’s a dog with a sensitive stomach. Shower, I am currently doing the plant paradox protocol that you know about. You’ve been kind of following my journey with that the last several months, so after I shower, get ready for work. I make a green smoothie sometimes. I’ll make some eggs to go along with it. I usually have a good 15 minutes to sit you know let little pup of poop maybe one more time. See if we can squeeze another one out before I go and then I’m off to the metro train station. I catch the 7:15 out of Richton Park and that’s about a 45 minute train ride into downtown Chicago and a few block walk to there to where I work and then I get started. The moment my job is one of those jobs, it’s the moment I walk in you hit the ground running and there’s no stopping until the moment you put your head down and try to run out of it five o’clock.
I remember those days. Tell me actually a little bit more about your background because you have quite an amazing background in just like a professional life too.
So born in Joliet raised, my entire life grew up a country girl, some of my favorite stories are about mooning goats and riding cows bareback and swimming in the creek, not the creek, we got to be very clear here. We’re in the country so it’s the creek at the creek, you know mud wrestling with my neighbors and doing things like that. So I think I can fool the best of people and people think that I’m and the city chick, but definitely not I’m a girl who enjoys watching the stars seeing being able to see the stars at night. Which is why I still ended up in buying a home? So that’s where I grew up.
What do you do now?
I’m trained as a clinical marriage and family counselor. Started my career in private practice had a really great opportunity to learn the kind of the family court system. So I did high contentious divorces and custody disputes with will in Cook County family courts. That’s where the bulk of most of my cases came from so parents who were trying to gain custody. Trying to take custody from her from the other parent. Maybe there are some child removal cases. Children were removed from the homes for a variety of different reasons and kind of working some of those cases reunifications. Working with some families who maybe somebody was incarcerated and then trying to reunify with the child or like I said some of those child removal cases, maybe they were removed and they were not working on regaining some sort of custody or parent parental rights again and then the other bulk of my practice was working with adult substance abusers and so I worked through the outpatient level for quite some time and did a very short stints and adult residential substance abuse. Had a lot of fun you know and that short said that I was there working with those clients I think kind of watching their passion for recovery was life-changing. I always say you know you don’t need a long time in in residential substance abuse work to learn a lot and I learned a great deal in that short period of time and got to touch a lot of people’s lives in a very short period of time. Which is a lot of fun and then I ended up now I’m so now I worked one of the most confusing jobs ever. I’m trying to explain to people, but I’m one of the managers of a behavioral health call center, our biggest role is providing behavioral health intake and assessment to kind of make a determination on the best level of care and helping people get connected to care in their community. That’s just that’s a standard call, but then even though we’re not a crisis line, because we’re still a behavioral health line we do take crises on a regular basis. So there are people who are in the middle of manic breakdowns. People who are calling in who are psychotic people who are challenged with suicidality, homicide allottee and figuring out the best way to help them get connected to care. Sometimes they’re not connected to reality and when you’re not there with that person and you’re talking on the phone with somebody who’s not connected to reality it takes some time and it takes some maneuvering and it takes some patience to kind of be able to work with them. At some point there they were connected to understand that they were who they were calling and what number they were dialing and so they were there asking for help but maybe by the time we answered six seconds later they lost it and so we have to kind of help them figure that out. A lot of the people that I work with are just starting their career in behavioral health and so my role and the other managers is to really assist them and providing them with a lot of that clinical development and professional development and how to how to be great clinicians and that’s my favorite part. Is not only do I get to help clinicians become better clinicians, but maybe I can help clinicians find their path because there’s the more. I am in this field, the more that I learned that there are a million different paths for counselors, social workers, psychologists the sky is really the limit and figuring out what you want to do. Who you want to work with and how you want to do it is really up to each person.
The reason I was curious and wanting you to share that is because they were — we’re kind of talking about your parents. Want to flip back to what you do and how it might have helped you know with what’s going on with you guys. So tell me about your mom. Tell me like start to finish everything about your mom.
Mama was born in 1949 in northern Minnesota. It’s helpful when I talk about my parents because it may come up just in the dynamic of our family that I’m biracial. My mother is white, my father is black. My mom was born in northern Minnesota and was a high school math teacher she spent the majority of her career Joliet Township and Rich Township and loved working with her students that was and now that it’s like now that it as an adult I look back on my childhood and it was like oh well mom left early and in the morning to meet her students early before school and then she stayed after school to be with her students and my brother and I were she’s just like you guys you’ve got it you know I took care of you just fine. You know at six years old you guys are fine. My mom is a very passionate educator. Her philosophy was, you can’t be a teacher you got to love kids first, your subjects second. She was a math teacher and she loved math and geometry and physics and things like that but her biggest passion was working with the students. She was always kind of a quirky woman. She was always said things that she didn’t want her to say. She definitely embarrassed us as teenagers and I had some quirky behaviors and at about in our late 50s early 60s some of those quirky behaviors got a little bit quirkier. They’ve been in the same house since 1986 the silverware has been in the same drawer since 1986. Even when the kitchen was remodeled the silverware stayed in the drawer since 1986 and there were some behaviors that we noticed. My parents spent a lot of time traveling after they retired and there was one time she came home and she just couldn’t find the silverware in the drawer the forks would end up in some other place. She’d get frustrated. She’d blame me for stealing her shoes. For stealing the silverware. We did a lot of testing, we took her to Northwestern and for anybody who’s familiar with the dementia Alzheimer’s path to diagnosis it always starts with cognitive decline. It looks like their cognition is just not functioning that they’ll be fine and we knew it was much more than just cognitive decline. Both of her parents had either Alzheimer’s or another form of dementia. She’s had several cousins who have passed from dementia and so I kind of wanted to call Bowl on the whole thing that this was just we are going to go get a second opinion and the struggle was if anybody who’s been in this process, you have to get the whole family on board in order to really get the care that the person needs and so that was the biggest struggle was. There was just a lot of family discord. I was still living at home at the time, I was finishing my master’s in counseling and here I am kind of pretty indignant actually just kind of scream and something’s wrong and I believed in early intervention and I wanted her to have care now and everybody else was like she’ll be fine. I don’t know what you’re screaming about stop being so dramatic. Stop worrying about everything. She’ll be fine. Eventually my dad and everybody else got on board you found another doctor who was like well she’s going to pass a lot of these exams. A lot of these mental status exams because she’s quite intelligent and she’s a geometry teacher and these are spatial things that we’re asking for her to do we’re asking for her to draw a box she’s been drawing boxes for the last 40 years she knows how to draw a box and so she isn’t losing her some of her skills because those for her are averaged skills. My mother can draw a box; you can draw a cube you know what I mean. This neuropsychologist neuro psychiatrist was really helpful and kind. He still didn’t want to put a dementia diagnosis on anything but eventually in 2014 she was finally diagnosed with vascular dementia. Essentially she’s had several tiny little strokes. She does have the amyloid plaque, which is synonymous with Alzheimer’s and that ends up blocking and creating some brain damage and things like that. At this point, mom is 69 years old; she is unable to function on her own. She needs some assistance with dressing. She’ll need assistance with eating her appetite, she’ll either forget that she ate or she doesn’t think that she’s hungry. Her language skills are diminishing. She can’t really kind of keep a full sentence together. She can’t really follow your sentences but she’s a happy old lady. She’ll still smile and laugh and she’ll try to play with you and she’ll scratch your back. She’ll still make some of her favorite famous sound effects. Sure things go fast, so she likes to use her sound effect still even if she can’t always communicate. She’ll try to use noises and things like that to kind of get some things across and we just smile and on like we got it, ma we got it so at this point 69 she’s definitely not functioning like a typical 69 year old. For you this has been like a really long time that’s like maybe not so much for everybody else and you kind of talked about but like you knew early on not right you kind of saw the progression so talk to us like from a caregivers perspective. Especially from my daughters perspectives, watching all this happen, watching it all unfold kind of like the first treatment and the dead ends with the care and you know the doctors and different things like advocate your birth.
What were your biggest struggles? What did you do when times got really tough and how did you care of yourself?
You know my self-care is horrible. I would say that this journey has taught me a lot about patience. If anybody who’s quite religious always laughs you know don’t pray for patience because that’ll make you wait, I sure prayed for patience and God gave me a mother with dementia, so it has it’s challenging to work with somebody who can’t always comprehend what you’re saying. You’ll ask her to do something or not do something and five minutes later she does it again and it might be something that’s serious or put somebody in danger. I asked you not to turn the stove on and the stove gets turned on. She likes to scream when I Drive. Drives me insane. This is craziness, look could you not scream when I drive, but she’ll still do it. Having some patience and some understanding that it’s she’s not trying to annoy me she’s not trying to burn the house down and she’s not she’s not trying to get us into a car accident, she doesn’t remember or she didn’t even process the first time I told her four years ago not to scream when I drive. When I tell her now she’s not going to process it, remember it or be able to change the behaviors. Who she is now is just what it is. As a caretaker, I’ve had to learn a lot of patience. I’ve had to learn a lot of humility and I think some my biggest things are I really want to make sure that whether it’s my mom or my dad that they never feel ashamed. That they never feel like I don’t you know because I have to bathe my mom sometimes and I have to help my mom toilets and there’s been times where I’ve had to get quite intimate with my mother and thank God that my mom still has a pretty damn good sense of humor even when she doesn’t really recognize what’s going on I’ll tell a quick story. Real quick, not to get too vulgar, but I had to clean my mother and you know in intimate areas and I said mom in my efforts to not scare her and in my efforts to not make her feel ashamed, I want her to know that I was going to have to clean her and I’d let her know where I was going to be touching them, looking and that I would be patient and that I would work with her and she said to me well if that’s why you ought to go. I’ve had two kids and I was like oh God there was like this moment of lucidity for her that she number one remembered that she had two kids and number two it was almost like she was trying to make me feel a little bit better in the moments where I was trying to make her feel a little bit better. Trying to get me to laugh like well what you want to do, no it’s not really not what I want to do so you know thank God that she’s still sometimes as these his halo slivers of lucidity and still has a really good sense of humor about a lot of it but I think I’ve just learned not see too emotional, but learn to just be nice you know I think we can get very caught up sometimes and the hustle and the bustle and the rush but I think caretaking for my mom especially has been one of those of you never know what other people are seeing or what they’re experiencing. My mother, if you look at her walking down the street there doesn’t look like there’s anything wrong but as soon as my mother starts to talk at this point you can kind of pick up that she’s not really coherent to understanding things. For those people that don’t know, your mom, like I have never in the history of ever saw a woman so excited to go to the mailbox. She was! The mail was, when my mom retired, was something for her to look forward to. She could get this little walk. my parents driveway is about a quarter mile long from the garage door to the end of it, so she could get about a half mile walk in going there and coming back and that was when she was just become her 50s. That was her exercise and her habit that she’s just going to go. She’s going to go get the mail and she’ll look and show it’s not there. she’ll go back out later and get it it’s almost like that’s the one thing that she’ll know it’s about 11 o’clock, noon I should go take a look and see if the mail’s there. I don’t know how she remembers certain things or how she keeps some information and dumps others. I think that’s just the amazing part of a brain. How it works and when it doesn’t work how it’s still functioning and working. What is it that says you the mail every day to go to the end, but don’t know who any of the children are. you don’t always hold the image of who that is but it’s remarkable to me, absolutely and you know what – maybe your parents or loved one or whoever, Alzheimer’s or might be you know the beginning signs of some kind of dementia or what would you what steps would you do like senior holder. Like if somebody came to you and just you know my mom, my dad, whoever showing these signs what do I do? What would you tell them? So it’s funny because I had that. I had several old classmates kind of reach out to me one recently, as well, in regards just kind of mental illness and in the parent in the first in just in general. I think some of my biggest advice is just be patient. You have to kind of wait for some people to get on board, but also don’t stop fighting. I really look at myself as an advocate. I really do. Instead of like maybe a caretaker, I define myself as an advocate and that’s probably the counselor in me. I’m trained to advocate for my client and I advocate for my mother. I advocate for my father and that was what I think I was doing during that whole battle. I was advocating for mom even if that meant that I had to fight the remainder of my family. I was still going to advocate for mom and it may not have come out in the prettiest way – that’s some other advice – like this is not going to be pretty. There’s nothing that is going to be perfect or beautiful about this process, but there are going to be some missteps. There are going to be some moments where you think you’re doing what you’re supposed to be doing but maybe it’s wrong. I told my friend recently; if at this point we’re now the parent and you know what they say about parents, they’re not perfect, but they do things with good intentions and we’re not going to does everything perfect to care for our parents. We’re going to make some missteps we’re going to break when maybe we shouldn’t break. We’re going to allow things to happen that maybe we don’t want to happen, but we do it in an effort to compromise. We do it an effort to kind of play the game. It just not pretty and be okay when it’s not pretty. be okay with the fact that you’re going to have some discord with some people that you love and hopefully the people that you love are okay with that discord as well, but the two three four ten of you however many people are going to take this journey with you. Hopefully everybody’s on the same board, on the same page. Eventually our goal is to care for this person or these people. We may not always agree on how to get there or the path that we’re going to take to get there but hopefully we can agree on the end goal and we’ll figure this out on the way. It’s to talk about some of the missteps we made it was like we begged for the keys. We begged my dad to take the keys away from mom and maybe we pushed we should have pushed harder. We should have had this conversation harder and I think we bent and we compromised and we said well you know what maybe we have to let something bad happen before everybody gets on board and something bad did happen. She went missing your 24 hours, we couldn’t find mom we have no idea where she was and this is what I talk about when things aren’t going to look pretty all the time and God forbid something bad like this happens for somebody and hopefully it’s on a much smaller scale. When we talk about something bad might have to happen in order for everybody to get on board maybe they left the stove on and burnt a hot dog. maybe that’s, I hope to god that is the worst, hot dog please I hope it’s a burn hot dog because sometimes something bad has to happen. I think for change to happen, discomfort that the counselor and mean believes that just the only time change happens. is when discomfort happens and so the counselor and me I think at that point said okay I know I have to push but I’m going to allow for discomfort to happen and maybe another way and everybody had some discomfort for about 24 hours. This is around the same time that my dad was diagnosed with the second bout of cancer. He was in the hospital for a week. Had a kidney removed so mom was already unstable with not having my dad in the home? My brother and I were to work. She was back at home, she was at my house her world was really kind of in a tailspin of not having consistency and regularity and my dad comes home and she gets up thinking she’s going to drive to church and she never made his church. she made it, was a three and a half hours away and the other side of the state that day back journey for 24 hours she hit three states Illinois, Indiana and eventually she we believe she made it into Iowa and turned back around but it’s my advice is you know some of those top notes to go back over them again. It’s not going to look pretty. Be okay with that. Remain an advocate. Keep fighting and be okay when it doesn’t look pretty. Be okay when bad things happen. When the coach I got is just a burnt hot dog you know you okay when you get the burnt hotdogs. Be okay when there’s a there’s a fight. It’s going to be not everybody is going to X this disease at the same pace and being okay with that not everybody is going to accept this at the same pace.
I mean your journey with your mom is so remarkable and so admirable really to look at you and how you handle them but you kind of mentioned it a little bit too and I kind of wanted to keep separate just so you can kind of speak to you but all the while that you’re going through this with your mom. Things are happening with that too.
I was trying to leave a little humor in this I would say my parents are together one person. My mom physically is as healthy, her brain is not. My dad’s brain is healthy his body is not. So together I still have one whole parent. my dad’s functions is the brain my mom functions is the body and dad was diagnosed with prostate cancer when I was in high school had surgery cancer-free for several years and ended up getting diagnosed with kidney cancer. They went ahead and removed that kidney. He spent a week in the hospital trying to figure out are we doing dialysis. Dialysis we’re doing dialysis. We’re not doing dialysis and this was all around Christmas, New Year’s Eve. Another tip, by the way, if your parents are ever going to have a procedure doesn’t do it on a holiday. Don’t do it on holiday weekend, you can’t ever get him out of the hospital when it’s a holiday. You can’t get anything done around a holiday in the hospital. holidays and weekends if you ever have to go in the hospitals you ever go on a weekend and do it everyone whatever fun holiday oh it’s a lot worse everybody’s just like well we can’t get anything done because it’s Christmas., then a week later it’s New Year’s, well we can’t get anything done because it’s New Year’s and so this is where this was the moment where my advocate likes jumped up again and I got feisty this time with now people outside of the family. When I was advocating for mom I got feisty with my with dad, brother and uncle now I’m feisty with doctors because the care that he received was just god-awful. I’m fighting with insurance companies. I’m fighting with everybody to get my dad care and when he comes home to keep in mind the my mom went missing on New Year’s Day 2017 on January 2nd 2017 was my dad’s first dialysis treatment and I had to have him there at 5:00 a.m.. I did not sleep that entire night. I got up at 4:00 rush back to my parents’ house got my dad up. My mother is still missing but we’re going to try to keep going like business as usual because my dad needs dialysis to live at this point so we get him in the car. he still sore and in pain from surgery and taking an organ out of your body and we get him to dialysis at 5:00 a.m. and just a little after 5:00 a.m. was when I got the call that they found mom and so now I’m rushing to try to figure out I got to get out to Western Illinois to pick up my mom but I also have to figure out who’s driving my dad back home from dialysis and so there’s no coordination luckily my dad started the family’s been amazing with support. my dad’s brother and his wife and my dad’s sister then or supportive and so people stepped in came into town helped me out you know and at some point talked about myself to hear myself care is work. I got to go back to work. I have to be able to feel useful and productive that’s where I feel my best even though if you’ve ever seen any of my counselors are watching this right now, you guys think I look crazy at work but that’s going buzzing around but that’s where I feel productive. I feel worthwhile at work and so eventually I had to that was where I put my foot down in my self-care was. It’s been several weeks; I have to go back to work. ABS work will probably give you a sense of control like in a world where managing at that point in doing what you can kind of and tweaks and how you’re how you’re living your life and what you’re plugging into and that was another question.
I was going to ask you because when those times not really tough and like especially now with you know how things are kind of going and stuff. What are you leaning most on to kind of help you getting through all the elevation-
Elevation is great oil. she came over to my house one day you guys caught my what did I put that Instagram maybe she came over and she brought me to this because in the midst of caretaking both of her parents and working downtown and doing all this stuff your car is still at that friend that will come bring you tortillas. You’re right next to my parents’ house. I had to go I don’t know what I was doing was I installing elevated toilet seats or something. I don’t know there’s always maybe dropping off groceries. I’m like the grocery theory for them they go to sleep on Saturday they wake up on Sunday and their house is full of groceries. what was that that’s like magic total magic but yeah but that’s like go to Mexico very beginnings my addiction to caretaking it’s like I saw Misty had a subpar tortilla I’m like I need to get Misty this better towards this tortilla is a much better and I need to make sure that Misty knows that there’s a better tortilla out there surgery he was now they were moving him to rehab facility and we were trying to put my mom in a respite care. like there was a lot going on and she’s telling me all this I’m like it’s working fabulously so I think between myself, Terrace turned into the elevation taking care of my body and watching what I put in, being much more conscious of what I put on my body as well and I’ve always been fairly conscious as long as I’ve been fairly conscious and I had I think when I started working this job and then taking care of my parents I went into a not so good self-care phase at all. I got very overwhelmed and I and I got into a hole and I couldn’t quite figure out how to take care of a job and my parents and at the time my big dog was sick and I just everything else was going on to just life was happening and I was tired I would long commute. I have a tough job I have all this stuff and I was putting in things that were just there to soothe me, to increase my serotonin, in a matter of a brief second but really ended up just destroying my body, destroying my mind, destroying my functionality and so I think the last several months I’ve been much more conscious about taking care of myself. I mean actually the last year I’ve been trying to get on the path and I would start and then I would get too tired and I would just give up and I’m like I’m just going to go to cullers and get myself another burger because that’s what makes me feel good and I’m not feeling good today. What I put in. what I put on and much more conscious but I changed my reward system. I think that was the biggest thing instead of my reward system being junk food, my reward system is meditation moments to myself. As crazy as it is reading the news.
I’m Kalitta Chol and I love that nonsense and I just so immersed into it even though my blood pressure gets high. I don’t know why I do it to myself but there’s something about it that is it gets me away from I think some other nonsense that I feel grounded knowing what’s going on in the world even what’s going on in the world might not always be good. I’ve always felt grounded in I’m aware of my surroundings. I’m aware of what’s happening. I’m aware of how I’m feeling about it. I’m aware of how I’m feeling about myself. Cuddles with little Papa are just the greatest – he’s getting better care because I’m taking care of myself better. I think my parents are getting a better piece of me because I’m feeling better and also – oh God talk about advice boundaries. boundaries folks like even when you have somebody who needs you to take care of them at some point, you cannot always say yes like at some point an O has to be a part of it and it is the first couple times you do it is the heaviest guilt you’ll ever feel but figuring out what needs to be a yes and what can be a no is a big part of my self-care with everything if it’s not going to serve a greater purpose. I have to be able to say no. if it’s not going to make that person’s health life better it’s not going to help me feel better. we’re both just kind of neither of nobody’s benefiting from this just something that everybody’s just expected to do. No I’m not doing it absolutely not. No like what so with all of that off care and setting down doing all that you know at least now you’re the most inner peace.
What about caregiving? What about you see come through this whole process there’s different angles of self-care that you’ve been able to implement and learn from in a different way. Like what right now can you can, you actually say brings you the most inner peace. That you can just sit with like okay.
This is this is going to be very exposed for me but I think what brings me the most self-pieces is a sense of worth. I think when I feel at my lowest when I wasn’t taking care of myself. There was this loss of worth loss of value. I talked about going back to work and feeling valuable and feeling productive and feeling though I can contribute and so that’s where I would run to often even when it got crazy I would still run back all of this has taught me I think my strength, my worth there was a day, Christmas Day last year I spent the entire day in the hospital with my mother assisting with inserting catheters. Assisting with some of the most god-awful things you ever wanted your parent for, I mean I think I was at 16 hours in the emergency room before I finally caved and said yeah admit her. She got it I can’t I’m not taking her home. this what we’re doing, isn’t working and I felt so tired but I got home and I was like I can’t believe you just did off but I can’t believe and I did it on no food to because I didn’t I thought it was a UTI we were going to get diagnosed, get some antibiotics and I was going to be home by 10:30 in the morning. That night I was still there and I got home and I was like I can’t believe you did all of that. You complain about these tiny little things but you just pushed through an entire day of doing things that people won’t ever do for their parents and I that was like my superhero moment. I was like oh my god like even if I’m not worthy in somebody else’s eyes like holy like I can’t believe I just did all of that and I only cried what once. maybe shout-out to the nurses that day at St. was the St. James Hospital Olympia Fields because they were absolutely amazing because not everybody you know it’s I think that’s a frustration of mine just side note, the medical field and even the behavioral health feel like it’s interesting how many people like are afraid of my mother won’t talk to my mother won’t engage my mother will or will try to engage my mother no matter how many times you tell them she can’t communicate for herself they’ll so but we need to hear from the patient. that’s how the day started was it one of the doctors came in and she was like really mean to me and was challenging me and who I was to my mother and I think depending on the day I looked just like my mother other times like I look like total minority and I don’t belong to my mom at all and so today depends on who you’re talking to and this person was like who are you what’s your relationship to this person? how are you consenting to treat them and I was like I’m her daughter and she wouldn’t let me talk for my mom she was very dismissive to me and I finally asked for another doctor and was like this just isn’t going to work. I said if you do not understand that my mother has dementia and I’m her daughter then this just isn’t going to work and finally they brought somebody else in who was just then that day got so much better but always fighting. always an adventure so in it and you have such a great spirit about it to like just being able to I don’t even want to say look on the bright side of everything but just listening to Jakarta talk like she’s not good complaining like she’s kind of like that funny reiterating of how things actually depend and like we’re defining the humor and everything and it’s just a really refreshing way someone talks about something that’s kind of so heavy and with you being in the behavioral health field that was actually why I wanted to circle back to. it is you have access to a lot of different resources that maybe people who don’t work in that sector actually have so for people who don’t work in that sector and they’re looking for resources or they’re looking for places to how or even caregiver support services. What would you guide them to two big things one is the Alzheimer’s Association. there are a lot of really great resources even on their website and their hotline as well acts as a huge support so you can call in and kind of ask a lot of different questions to the people who run their hotline. Very similarly to ours I believe their hotline is staffed with clinicians so you can call in if you need to have a vent session and be provided with about ten minutes of in the moment support. It’s a great resource if you’re trying to find caretakers, they’ll help you locate caretakers. if you’re trying to find residential types of memory care facilities, things like that, daycare facilities there’s a lot of different options but I know that I think that the next biggest challenge that I hear a lot of people say is but it everything is really expensive and I don’t really know how to access resources for those types of things so our government has the Department of Aging that a lot of people aren’t aware of and so you can contact to the Department of Aging, there’s obviously different state divisions of things and the Department of Aging can really assist you with understanding the Medicare benefit and what it pays for helping you locate resources financial or not and so I’m being able to kind of really understand what it is that that you do have access to. sometimes there’s grants and monies or governmental resources the Alzheimer’s Association just passed was able to get through a bill with our government recently to increase funding for Alzheimer’s research and they’re now working on a bill to increase funding for local resources, including support groups and daycare facilities and other types of mental health resources specifically aimed at Alzheimer’s and dementia. Those are some big things contacting you know your local representatives and even if you’re not that involved in politics, there’s things that I think are really important and in regards to our politics that it can really help us in this fight and being aware of kind of what’s going on. there’s a bunch of other different mental health care bills that are out there right now that are sitting that aren’t necessarily dementia and Alzheimer’s specific, but you know keeping in mind of what’s happening is really important and making sure that if you’re going to work as an advocate for your loved one. Working as an advocate, holistically is really important because the sad truth is that this could be for those of us who are caretaking now. this could be us later on and so advocating for your loved one now is advocating for yourself and making sure that you eventually get the care that that you need and things like that support groups Alzheimer’s Association can assist with support groups but overall is a counselor. Getting your own self-care your own support whether it’s through support groups or whether it’s through your own individual counseling. Just as a counselor. Just reminder going to counseling number one you’re not crazy dude if you go to counseling. Number two you don’t always have to go to counseling when you’re in the middle of a crisis you can go when you’re feeling pretty damn good you can still go and that way you’re learning coping mechanisms and gaining support for when crises do happen because crises will happen. they just will and being able to access care there’s a lot of different ways that people can access different counseling care as well and one of them is if you’re if you do have an insurance plan accessing that care if that your insurance. Calling your insurance plans and taking a look to see what their coverage’s and finding a provider. I myself work for an Employee Assistance Program which is a great resource that a lot of employers provide for their employees and so talking with your employer about do they offer an Employee Assistance Program and gaining access to that program you may be able to access free counseling sessions. Whether that’s three six twelve depending on your company they may pay for a lot of different things for you that you can get for free employees distance programs. Also offer other resources like helping you locate care facilities and helping you understand how to gain power of attorneys and guardianship over your loved one so keeping in mind to there’s a lot of legal challenges that come up. so accessing attorneys is really important if you’re concerned that your loved one is going to eventually end up with a debilitating mental health condition like Alzheimer’s or dementia. I will encourage you to, while they’re still capable obtaining power of attorney or figuring that process out early on will save you a lot of time instead of having to go through the guardianship process, which will take you to court you will have to go to court in order to kind of finalize the guardianship piece and obtaining a retaining attorney is probably the best and easiest way of doing that but not always the cheapest. So there’s some there’s some steps to take early on if you’re concerned definitely get that power of attorney. it’s made things a lot easier in our family I think we knew just watching my grandparents and my mom’s family we knew to kind of put some things in place so my parents did put together a will and a power of attorney piece which has made some things easier for my brother and I to be able to access care for my mom. when my dad was in the hospital and he wasn’t feeling that well himself and we were trying to figure out how to get my mom into respite care well if my dad’s incapacitated power of attorney automatically drops to my brother and I which made it a lot easier for us to go ahead and get some things done.
That’s all like such amazing info! That’s why I love bringing people like you.
I’m the emotional counselor so I practiced from kind of an emotion allottee kind of standpoint. All of my theories are kind of rooted and based in emotionality in some way somehow and emotional intelligence is huge and what I mean by that is we are emotionally ignorant. We are we are challenged and being able to say I am sad. I am mad. I am happy. We resort to these things that we call secondary emotions that are more socially acceptable. So when I eat my feelings, I end up telling somebody I’m mad but really what I mean to say is my feelings are hurt and I’m sad right but it’s more socially acceptable for me to let somebody know that I’m pissed off at them than it is for me to say you hurt my feelings and so it’s really important, I think, that we’ve learned at a very young age and this is what I was in private practice, this is one of my favorite things I love doing with kids not only because this my boss says I’m dramatic and overly animated but it allowed me to help children my animation in my dramatics allowed me to animate emotions for children. this is what looks good and helping kids really be able to understand what every emotion looks like what it feels like what it behaves like and then being able to say I’m mad instead of stomping my feet and tearing my coloring up because you’re mad at me right. That’s what little kids do and they’re mad at somebody they want to hit them. They want to destroy something that they created and then as adults what do we do we grow up and we want to destroy other people. We want to vandalize and we want to hurt people’s feelings and because I’m mad now I have to destroy because I never learned at a young age how to just say you hurt my feelings. So I am a huge proponent of emotional education in schools being able to teach appropriate emotional or I should say healthy emotional expressions. Emotional identification being able to communicate emotions in a different way. I think it would save us a lot of damn time instead of having to explore emotions when you’re 24 years old right and then all of a sudden you’re realizing I’ve been mad for five years but no actually I’ve been hurt for five years and so it’s I’m just I’m intrigued and I would I would love to see what would happen to our world if we taught kids in preschool, kindergarten, first grade, second grade elementary school just appropriate emotional expression identifying the emotion and saying this is a healthy way to express your anger and you get to be mad and you have every right to be mad and I’m not going to take away that emotion for you but here’s a way that you can express being mad that gets your point across and you’re able to express it without having to damage things around you.
I love that. I totally agree I think you know what the world would be like when that does happen because the realistic thing about it is this like people you and I who have different ways. When you and I have children raising very different children and someone who’s still very unaware. You know my channel will be so emotional and dramatic it’ll be fabulous. Oh goodness, but seriously, though I appreciate everything that you’ve shared with us. I’m excited to get this on student for everybody to kind of you’d like all those pieces that you shared with them in your church just the emotional vulnerability future that is that’s key. people talk about teaching kids how to be emotionally kind of out there and it’s sort of like expose about the emotions like it’s nice to be able to see some flowing emotion like you when you’re going through a battle, like what you’re doing with your parents and it’s just its raw and it’s real and it’s authentic and that’s I think the world needs a lot for that so I appreciate you all right appreciate you, all right soon I appreciate everybody for me and I will put everything in the in the description in terms of all the resources and such a car mentioned and from there all right thanks Christy thanks I’ll see you soon all right bye-bye.
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