A podcast that listens, hears, and offers wisdom & hope from caregivers who have lived the experience.

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

Granny Needs My Help – Kids as Alzheimer’s Caregivers

Granny Needs Help Kids as Alzheimers Caregivers

00:00:01 – 00:05:19

Welcome to fading memories. A podcast with advice wisdom and hope from caregivers who have lived the experience and survived. Tell the tale. Think of us as your caregiver. Best friend as you know. My mom suffered from. Alzheimer’s and cognitive impairment affected my grandmother and great grandmother. It seems to run in my family. But i’ve learned my brain. Health doesn’t have to follow the same fate as those who came before me. I am doing what. I can to improve the health of my brain including eating a better diet and exercising. However i learned recently that when it comes to nutrition most of us are still living with undernourished brains. And i know i need something to fill those nutritional gaps this led me to neuro reserve and their product relevant relevant is a nutritional supplement that restores the vital nutrients free healthy aging brain renovate includes seventeen the most important nutrients that specifically target long-term brain health. These nutrients come from the mediterranean and mind diets which studies have discovered can reduce our risk of alzheimer’s by over fifty percent. You can use my code f. M. fifteen fifteen percent off of your order. This code is good for subscriptions which will apply to all future orders as well as individual orders go to neuro reserve dot com to purchase. The link is in the show notes and you can also find it on my website. Neuro reserves mission is to help our brains man match our lifespan. Many people assume that kids can’t be caregivers. They fear that. As their loved ones disease progresses the kids will be frightened and confused but are more observant than we expect. Attempting to shield them from what is happening is unlikely to work worst. It can make them afraid of their loved ones encouraging kids to ask questions help when they can will go a long way in assisting them to be effective caregivers and kids have unique qualities that make them naturally good at some caregiving tasks in this episode. I talked to debra mills. She is taking care of her mother and also helping out with her grandkids. Her household is a perfect example of multi generational caregiving. Deborah is the author of my granny. Needs help a beautiful book designed with her granddaughter and her mother in mind with me today. Is deborah mills. She is a caregiver for her mom and she has written a children’s book called granny. Needs help and we’re going to chat a little bit about her journey with caregiving the book. But then we have a special guest coming in in a little bit. So thanks for joining me debra. Thank you for having me. I’m super excited to be here. Awesome so you’re still can tell us about her mom. You’re still carrying for mom. Absolutely i’m still carrying for mom. Mom spurt started showing signs of dementia. Something’s going on probably around two thousand three or so. You know getting kinda formal diagnosis around two thousand five thousand six. But it’s been a while it’s it’s been a good eighteen years now. You’re right up there with me. My mom had alzheimer’s for at least twenty. I think started showing signs in ninety six but not ones that you would be aware of like. It was more when you look back. You’re like yeah the those orders that she was taking with no details. That’s zeina so right. So she ended a long time and if she hadn’t fallen broken her leg she probably would still be this so why fortunately she always said things were out for a reason which always drove me insane. But she was right. Yeah mom had a point she did. I’m still trying to learn to let life you know like i’ve tried affair with post. Pandemic life is supposed to look like for me. And i realized i was putting on artificial deadlines figuring that out so so. When did mom move in with you. So you said. She started showing signs in. Oh three diagnosing. This is twenty one hoof when she moved in with you while really she just moved in with me a couple of years ago with my husband and i what happened i was. I would go to her house to take care for every day every day. That was my journey. Go up there to take care of her. She live maybe twenty minutes away And my father needed help also had a massive stroke so he was paralyzed so he needed help and came a point when i realized oh she can’t take care of him anymore so when i realized she couldn’t take care of him than i ended up moving there and i live with them and i would try to come home on the weekend.

00:05:19 – 00:10:03

I’ve got like the best most understanding husband in the world but that is what we did. I for several years. I’ve read a lot of people that do that. And it’s like. I don’t know that that was not something. I think i could’ve done so admire that you could do that. And your husband for sharing that way. Yeah for us. It was two of them and they both need extensive care so we didn’t have the room in our home to break both of them in. So that’s how. I ended up going there and staying in there was one day. I would call my mom and say okay mommy. I would put up the medicine before i left. I put my dad’s in one place. I’d put hers in a separate place and then i call her and i would walk her through getting the medicine taking her medicine and then one night i called. Okay mom time to get medicine. Let’s go get daddy’s i and she’s scottish. You’re going to be so proud of me. I said i am yes. You’re going to be so proud of me. I took my medicine already and my heart sank. Because i knew that was not good and so she had taken the medicine. I left for her and she took the medicine. I left for my dad and that was the last night that she spent by herself. So i moved in after taxes like they. They they can’t do it on their own. Poor mom shoe so proud of herself and fortunately bursts your bubble but just that’s the hardest thing with this disease. It’s like you know they. They think they’re managing. And then you gotta just like crushed their dreams exactly. I didn’t bursar bubble at all. But then you start calling poison control. Call the doctor’s supposed to do you know but it all worked out and she was fine. Unfortunately one dose of his stuff probably wouldn’t be too bad but yeah that must have been a must have been a really exciting evening probably a lot of sleep. So she’s how old is mom now. Oh gosh she will be eighty next month. She is seventy nine. You’ll be eighty and may awesome that a couple may birthdays in our family. So what prompted you. You know you’ll have a few things going on in your life. What prompted you to the bright children’s book. I just felt like it was our story. And i wanted to write our story out. It was more so kind of a A self care thing for me. Let me just get this out. And so i wrote our little story and when i read it back to giusseppe. She was so in awe in her. Little is scott big like okay. Well maybe maybe a handsome thing here So it was really just a sort of a an act of self care for me. Let me write this. Get it out and it was also a way to kind of put my mom’s name down in paper and its ceo her legacy so to speak. That’s really cool design for those people didn’t figure it out is the granddaughter. So she’s the great granddaughter of your mom and you you take care of the grandkids. Why now when we talked a month or so ago you took care of the great kids during the week. Was that a pandemic thing or always helping out with the grandkids to it’s a pandemic thing you know with the pandemic. I have one little guy. He’s three and his day care. Provider was like nope. She shut down the whole daycare when pandemic started with with no reopen date is like i’m done in so i have him so his parents can go to work and then Schools are closed here. They just opened back up and the kids can go two days a week so now. She’s in school two days a week and then we do virtual schooling on the other days. You’re in the dc area correct. Yes i’m in the dc metro area. I’m actually in fairfax county. Which is right. Outside of dc mccray in salmon the san francisco bay area. They think i know the high started back up a couple of weeks ago or air about. This is april eighth and i don’t know my daughter’s almost thirty so i don’t have to worry about the schools anymore but yeah they were school for over a year and i feel very badly for the class of twenty twenty one. ’cause they did not have a senior year they might know. Yeah yeah. I thought the class of twenty twenty kind of got a little. You know beat around but at least they had three quarters of a senior news. Didn’t have a grand russian. So yeah it’s been It’s been a time it has. It has been a time at courtney’s as small so she kinda changes as things change. She’s not set in her ways and so for the little people is not quite as bad.

00:10:03 – 00:15:02

I don’t think as it is for the older ones you know. But she’s she’s two days a week and she’s tired now after those two days because his men in the classroom you know or year. That’s crazy so hopefully win. They can go back fulltime. Quote unquote normal. Whatever that skin look like normally you’ll be able to take the book and maybe share it with her classes or she could take album nice. That will be very nice. So i’ve had conversations recently about living well with dementia. I personally think and training might be the wrong term. But i don’t know of a better one right now that on the zoom lot. Today’s my brain is a little little squishy. But i think if we educate is a better term the younger people on this alzheimer’s and it’s not a scary thing although canada’s but you know it’s it happens it’s not normal but it’s not you know we don’t need to be afraid of grandma we don’t need to be you know we don’t need like stick grandma in the corner. We don’t need to avoid her. I really think that would help with keeping them engaged. The older adults and giving the young people a little bit of a purpose is slash was i. I don’t know if they’re re opened at all. it’s a private a church that has daycare and preschool. And then they have older kids after school and then they have an adult day program and in the morning they’d bring over the preschoolers and kindergarteners to interact with the older adults and some of them could read to the kids because they’re young enough. The books were easy and then in the afternoon Older students like the third fourth graders would come over and interact with the older adults and sometimes they could help with a little bit of homework. And a lotta times. The kids would help like with art projects in an games and stuff and it was just gonna like free grandparent time. It was like yay opted grandparents. And what i loved about this program is when i talked to their director. The kids benefited the older adults benefited. But the sandwich generation caregiver person who wasn’t present is they’re running around trying to keep the world going. They benefited too because of that interaction with the other two generations. And i would love to see a lot more of that so i kind of excited to learn more about your book and Help with none at all yes. Dezei was right there the whole time and you know she was. I wrote but she was more my editor. One who critiqued me. You know did happen like that. Maybe get like this. Oh she was more of a critique person than you know that writing but she’s right there the whole time giuseppe has been with me just live with me but at the same time we live close in proximity. So she’s been with me since birth so that means she’s been around her granny since she was born so she’s really good with her and it is education and a learning process so that they’re not afraid you know she knows something is a little different but she’s not afraid which she’s had a few moments where she was a little bit unsure but that’s when you have a conversation and so she’s eight correct. She’s eight awesome. So that’s what i. What is her interactions with. Great grandma like She’s her cheerleader. I can say that you know because she has some trouble walking now. And so i may have to get her up and disease going. Come on granny you can do it. Go grainy as he’s the cheerleader or after run out of the room for a minute say go check. Granny will check on. Granny see how she’s doing so she’ll run in. She’ll come back grays on well even the three year old. Now do the same thing you know. L. j. go check on granny run and checker and come right back. She’s doing good. You know so. It’s a family. Effort is definitely a family effort. If they’re gonna live with you that’s the only way to do it in unfortunately To me that. That’s not usually what happens or i don’t know it just doesn’t seem to have got it all. Dial so really impressed. You know i just. I just do my best. That’s all i can do. You know that’s all. I can do so. I have them basically four days a week. You know they come in the morning when their parents go to work in the parents back and get them in the in the evening. So we’ve we’ve all got do this thing together. You know here give her. It’s keer but we’re still all working together. Now is considered when my mom was in the memory. Care the care staff i. We were all team for mom. And i kinda came to that decision because there was a lot of family members.

00:15:03 – 00:20:05

That would complain about this or that things. That may be needed to be fixed or adjusted. But it’s like don’t complain. They got enough going home taking care your parent or your your one point out that x. Needs to be addressed that don’t point and sometimes some of them would. They would almost be a little bit demanding. can i get. i get that. The mike they’re not here for you was like and i think the staff recognized that that was my opinion i probably i probably projected that when people were getting a little too pushy. We had a great experience. Because you know that was the same thing it was like. It’s going to take all of us to make this in a give her a good quality of life. And you now i know. My sister took her kids. My nephew is on the autism spectrum in. I don’t know that he went as often as my niece. Who’s older But that’s okay now. It’s like he had his own struggles. And zoe so much. You can do like you said and if if he wasn’t able to interact with my mom my mom was getting really challenging and he did not ever know her when she was good her is My niece did get a little bit of that but not a lot. My daughter’s fourteen years older than my niece. So my might all the good years which does this. Here’s at some resentment on the other side but we won’t talk about that. So do you happen to have the book handy. I forgot to ask you that before. We started good. She’s smart lady. Who i have it right here. So cute and now is the drawing on the front. Is that supposed to be j. Yes yes so cute. If there’s granny sitting in the background that is adorable so can we bring in. Giuseppe and i got a couple of questions maybe she can read a couple of pages for us absolutely year. Khazar are star. I say my name’s jennifer and i’m in california anti-british my daughter’s in california too so she’s always facetime meeting and talking to her on the phone awesome so your grandma says that you are a very big help in writing the book you were the editor made. Sure she got it all correct. Sneak up lying. Yes so what what. What do you think of the book. Do you like it yes do you. She saw her name french. She started dancing. Hey do you ever read it to your great grandma sometimes and then so can you tell me what is it you like to do to help your grandma with your great gramma tell her she sliding near the that we had to get the seat belt. Funny that’s a it’s very. It’s very helpful. That your your help to your grandma. What do other activities that you like to do with great-grandma going to keep everybody straight record. Pantley keller when she colored on the table. I bet you did that when you were little. Yeah i think we all probably did And then does your little brother color with you guys. Yes that must be nice. We still ernie. He has school with him He’s still learning. She says he’s three. Yeah he’s still learning to color colors on the table more than great-grandma he’s not inter- sneak occurring on the tv. Oh boy well you know when it’s a blank it when their mind you know sometimes if you look at it kind of through there is some things. Don’t if when your brain isn’t quite sure what’s going on you look at. Maybe a tv might look like a blank piece of paper. The table might look like like paper long. Do maybe that was the case i said. Do you wanna read us a little bit of your book. That grandma wrote for you in grandma. read kinda loudly so everybody can hear clearly. Parts will find the page colori. Great gauge sixteen are starting any likes to whistle. Enslaved on she colors ons to dunk.

00:20:05 – 00:25:07

Sarah colors on the tape. What can you do. Miami doesn’t get mad. I’m not a shame when she makes. I guess ray she’s doing the best. Yeah he’s doing her very best when the next stage rate anymore in. I don’t get sad or mad so much. i just want. Granted to remainder. J. miami is remember. I get angry at ashes Into staying that wouldn’t do any good. I just miss all the fun. We still have to share. So i just to be have even when life isn’t fair cheese now like she was because our her rain yet. She mccreary jess seton. Very nice awesome. My granny’s yes. The sprain is so when you were a little bit younger did great. Grandma’s was she a little bit scary for you know now not when she was younger actually more. So now we’ve had it. Because when she was younger she didn’t know a different. It’s just this is the way granny acts but when she began to get a little bit older as why is granny eating her food with her fingers. Why is granny so when she got to get a little when she became a little bit older than her reasoning skills increased so it’s her reasoning and understanding increase as like okay. Granny is not doing things that usually a grandma. What do so. It was more so when she was a little bit older. That makes sense and did. Did your grandma writing the book. Help you understand better as a little person. They were kind of friends because they were doing the same things you know when she was four. They’re both coloring. When you know giselle was or the jesuits show her granny out to take her clothes off at night in graduate listen granny pants off like this aac assured off like that in now. It’s almost like they had a little friendship going. That’s that’s awesome. See such a big help. I bet you you’re still a big help you are. That’s new Well do you have homework. You have to go work on now. Okay you can say that if you want to stay here for a minute you wanna go do something else. You wanted to stay here. Okay okay. that’s fine. Nice to talk to more than one person sometimes. Yeah so do you. There’s a second book they’ll happen. You know i. I had no idea that this book would make the difference that it has made or that. It’s making. I’m so i guess it it could be but i really wrote it or me and my mom and say and so to see it take on a kind of a life of its own and that it means something to someone else is amazing. Because it’s not wire road it so something is happening that i never expected. I spoke of someone just the other day. And i wrote an article. She asked me write a blog. I’m for an alzheimer’s group. So i did force and as like i was in school. She sent it back and she says on. I think you’re being a little bit too modest here. Can you beef it up leaves. And i’m like a gay beef. It up arraign. Howard do that. Because it wasn’t a story that i wrote to be up. It’s just really. It’s our light is what we live every day. So it’s amazing that you know other people see the value in it so maybe there be a second book. Now you never know. I’m so always so impressed that caregiver so many caregivers or at least i talk to the ones that i’ll do this. Create something else you know. We’ve gone through this journey or you’re still going through the journey that’s enough that’s a big task you but you wrote a book and i created a podcast and some people create apps where platforms for other caregivers. Or i don’t know. I can’t think of anything else. Top of my head. But you know it’s like there just seems to be this this desire to create and share instead of like food that journeys over. Thank goodness like you know. My mom passed away over a year ago. And i’m still here talking to people like you guys because i’m still learning on the caregiving front and so i assume that if i’m learning something that other people learn things.

00:25:07 – 00:30:00

So what kind of feedback in stories are you hearing from people that have read the book and shared it with their families is surprisingly From adults i have heard that they didn’t they didn’t know that that’s how alzheimer’s worked you know. Still people will say How do you from alzheimer’s you know they don’t understand that. Your brain controls everything that you do so I’ve heard that and just really the people having no idea because if you have not experienced this you don’t know and maybe that’s part of the reason that we still do things. Go back and do what we do. Even though caregiving is full time. I think one outlet to ride to a podcast or former group. Or whatever it is i think an outlet. It’s it’s a healthy outlet that allows you to express them the things that you’re going through in hopes also that will help somebody else and then once you’ve been through it i’m sure once i’m on the other side of this journey. I’ll still wanna help somebody else. You know because lots of times. You don’t find the help that you need like you said the neurologist told that one young lady oh it’s not gonna bother her like no because they haven’t been through it and it’s no disrespect to doctors or neurologists but they have it. Most of them have not walked in. Live this journey. They have a book knowledge of it. Not a not a day to day life knowledge. Now that’s true and everybody’s brains and personalities are different. Our biology is all enough different. That no one person with an alzheimer’s might tolerate anesthesia. Just fine and somebody else might wake up from surgery from anesthesia in. This is some of the horror stories. I’ve heard is that. It amplifies all the worst parts of their alzheimer’s dimensions. Like no thank you. We don’t need that. Yeah my mom had to have surgery kinda early on in this process. And i i learned you know is one particular medication i wish i knew the name of it. But there’s a medicine that they give you They give most people having surgery. The it knocks you out right away so you don’t ever you don’t know that you roll down to the operating room. You don’t remember getting on the table and it’s that particular medication that would cause my mom to have a change in personality. You know she was like that for a week or so after a surgery And so i had to say. Don’t don’t give her that. It does not matter to me that she knows. She’s rolling down the hall or that she you know she’s getting up on the operating table. Don’t give her that and so when they did not give her that particular drug. She had a different response to the anesthesia. It was that. I’m mary or that you know aren’t even know what to call it but they don’t want you to. The people have fear so let me give them something to knock them out in this room so you they give you something as you’re rolling down the hallway you’re out that’s that’s a different drug than the anesthesia. Now makes sense. I’ve only had her surgery. And the ad mike while i was at a surgery center so i don’t even know if they must have moved me but yeah i i don’t remember any of that. That’s the one that that bothered my mom and you know for a week or so. She’s dipped she was a different person. The new. I know we’re not just that anymore. Never that’s that’s interesting. I think that’s a really helpful piece of information to know because you have to kind of wonder as we get older you know like i mentioned. We had a friend that had both knees replaced. And then i don’t know if he had hip replacement but a third surgery that third surgery is the one that his brain never cleared all the chemicals that allow you have surgery without you know screaming and having to bike down on a stick wherever and but maybe it was that other drug. Maybe we asked you know if you’re not like i wasn’t afraid to have the surgery. I was particularly interested in having broke my collarbone. Some you know i. I’m sure it would have been fine if they had just said while. We don’t really wanna give you this other one unless we have to you. Don’t i’ve never had a choice. They don’t tell you know. I wasn’t aware that there was a pre appre. There is there is now. i tell them. Because i’ve had to have a surgery and i say don’t give me that and so now at you know when i had the surgery hours awake. I knew that they were rolling me down the hall. I actually helped put myself up on the operating table because i was wake that pre anesthesia. Whatever the name of it is it knocks you out a couple of seconds and you’re out so you don’t even know that you’re getting on the table. No i’m okay.

00:30:01 – 00:35:00

i’m fine. I will put myself on the table. They’ll give me that medicine. Because i see and saw what it did. Mom that is really interesting now. Did you have to like fight. Them on that or the mets good. I can enroll. They know that it does that to elderly people. Because i asked you know what in the world caused her to be this way. She had to have a back surgery and they said in some elderly people. This whatever the name is this pre anesthesia thing. it can affect them that way kind like how well. Uti will do an elderly person. And i’m like nope don’t ever know she doesn’t need it and and there’s no fight there’s no fight at all. That’s that is like not helpful information. I expected to get today but wow. I’m really impressed that way somehow stumbled on that piece of really helpful piece of advice. I guess then. I’m always learning something new and god forbid i have to have different. Surgery got forty nine and a half years in. Before i broke a bone i had a baby and then i had as baby a young child i had i have lazy eye and so they corrected it cosmetically. That is the extent of me going to the hospital. Okay so if we go another you know twenty or thirty years. I’ll definitely be too old for that pre cocktail and i’m not like you know i’ve had as of today. I’m up to a week to go for my second vaccine. But you know how they’re always like you know they i think they kind of like hesitate because they think you’re gonna flinch it just giving the shot. It’s no big deal Whenever hannah due to go someplace other than my town right here. Listen i’m ready. To get outta brentwood and goes something which were planning on. But i gotta stand on top of my husband so now the what’s the little guy’s name. Again giuseppe no. You’re the youngest one o. m. l. j. l. k. So he’s always pretty much. He doesn’t know anything different than green different. Nope do they international. Do they do and yes. He will share his toll as you know. Granny this is your truck. You know and i’m like okay but ’cause granny is now where she will eat the trump. Oh dear but he wants to share his toy sometimes or you wants to share a snack and you know he there. He’s helpful but that’s what he sees it us modeling what he sees in us. He doesn’t see as being impatient. Or you know tossing her in a corner. No she’s a member of this family and so easy how we act and then he does the same thing. That’s amazing so. I need to check back in with you about fifteen. Sixteen years to find out if he’s to be a researcher a caregiver a nurse. I’m like kind of interested to see where this beginning of his life. How that might shape his adulthood like moving. Here i need a crystal ball. Don’t we all right. Yeah don’t we all though we all and so you the Does the kids like multiple generations. It’s hard to keep track so the your kids do hang out sometimes and have dinner everybody together or is that not so it really is a whole giant team. It is it is. It’s a team. it’s definitely a team. You know my my one door is in california but the to always and their wives are ear and so sometimes we do. We have a big family. Dinners all here or when my son comes over to drop the kids off you know. Sometimes have to ask him for stuff. I mean just yesterday now my mom. She’s at the point in this journey. Where when she’s ready to go to sleep. She’s going to sleep doesn’t matter what’s going on. I don’t care if she’s walking if she’s gonna go to sleep she’s gonna go to sleep and i had to ask my son yesterday. Can you please carry grainy to her room. Do you think you can do that in his like all the way up the steps yes up the stairs but i think you can do it. He says okay. No problem mom. You know out. I’ll give it a shot. He just picks her up and cares are up the stairs or you know when my husband when we take it to the doctor now actually will have the here to stay here and my husband will go with us too because you can only take one person so my husband will go with us to the doctor’s office because he can more easily just pick her up in put her in the car versus caregiver and is struggling to get her in the car. So it’s it’s one thousand percent a team effort you know it’s like i get the brunt because i’m the daughter but i’m not doing it all by myself. Do you find that. Even in advanced dementia. Your mom knows how to push your buttons. No i’m on now.

00:35:00 – 00:40:01

She did years ago. And that’s when i saw lured. Do this a few years ago as she thought i was one of my siblings man or she would just she would turn into a different person is like this is not the mother that birth me you know she would turn into somebody else but that lasted for a couple of months and then she kinda. My mom has a very mellow personality. Very calm very sweet and that was just a short period in this you back to being her mellow self. That’s good my mom. Thought i was her best friend which was interesting. It made it a little bit of a challenge. Because obviously we’re not super huggy kissy with our best friends so we had sort of like a. We didn’t have like that super lovey relationship. Because of that. That’s where she got up. And i accepted it because there’s not other choice that she knew how to push every button just like she did when her mind was fine. I’m like i don’t bet this is. You would not push these buttons on your best friend not not regularly. I always thought that was so interested in like there’s an arte her. That knows who. I am is the. That’s the part that’s the mom. That’s just get a needle me about every little stupid thing at this point. My mom’s my mom’s use. The english language is very minimal. So nothing really makes it. Yes she talks a lot but you doesn’t speak in full sentences. It’s kind of a baby babble. It’s it’s really sort of a baby babble but if something something her mind is making her angry then she can make a good sentence but other than that. It’s sort of a baby babble. And you now she’s just She’s like she’s like she’s like a baby really. And i’ve heard people get offended at that statement but it’s it’s very true They do go backwards in time. You know right now. My mom has a lot of the infantile reflexes. The is getting big and the hands and feet. She’s got a lot of those infantile reflexes. So you know. She’s really at a different space right now. So she can’t push buttons not so she was never button pusher so that didn’t come out for her. That’s good ’cause i’ve heard people so. My mom was so easy going in the alzheimer’s and she’s like a totally different person by mom was the same but kind of amplified and to your comment about you know like your mom has a lot of similarities to an infant or really young child. There is an. It’s hard to demonstrate audio. But there is like you know as they decline. There’s almost intersecting arcs. Like children learn and grow and improve and they declined some point. They stay kind of around the same level as young kids. It’s not it’s not an insult or some sort of negative treatment of their. I have to be where they’re at. Yeah it’s not insult at all. And i think the people that find it insulting our people who haven’t walked this journey because they don’t know that’s just the reality of what it is like. I said you know they really have sort of friendship because they were about at the same space. You know let’s color. Let’s get our snag. We’re going to get our juice box. They were about the same space so it wasn’t an insult we’re just kinda you’re you’re meeting the person where they are in your caring for them the way they need to be cared for my mom choose all the time. Now choose constantly teasing baby. And that’s a good point dole. Do i go nope. she’s an adult. I don’t do not no. She’s to like a baby. So i found the you know most sturdy teething ring that i couldn’t so she doesn’t chew on her fingers make sense because that would be. It would be irresponsible of me not to meet her where she’s at i want to. I don’t. I don’t think i’ve ever talked to anybody that’s had that particular issue that’s really interesting. I think one of our constant chewing emma strategy bunn bananas. You know it’s like what am i supposed to do because add one or two. You know her fingers to be bleeding or because she’s literally chewing but you chewing with the pressure of a grown woman yet with molars exactly if the wonder what it is in their brain. That’s causing that. That need. That’s really interesting. Yeah we’ve we’ve. I’ve asked the neurologists of asked the prime marion just like. Let me figure out how to handle this. In the the thing that has worked the best is to give her just some that she can chew on other than our fingers. You know or a towel. Like a. I bought wash cloths.

00:40:01 – 00:45:09

It’ll give brand new. Wash w slater jewett or put in the freezer so it’s cold but because she can bite under her lips she can buy her lips you can. You had blood on my finger one day and i’m like to cut myself. And then i thought no go check her. She had chewed into our finger misleading. And that could cause infections. That’s actually you know people might not understand that that’s Let’s get some real medical possibility like she could get an infection which you know an elderly people is just. That’s the worst thing you can do is have any infection. Who because that’s what like the adaptive clothing some of them use velcro which is fine for some people but other people if the velcro touches their skin causes tears in the skin and then they get magnusson and ryan just have to figure out what works for your person and not. Everybody goes to the same thing and i guess. Maybe that’s one of the reasons. The doctors have a hard time as well because not every case is the same you know. I don’t know how many people that you’ve interviewed bin. And i’m the first person to say something about this julie. Yeah i mean everybody jokes something different. I don’t know that they haven’t had that experience. Where you’re the first person that i can think of. That’s mentioned it Yeah it’s a. It’s a constant here. And like i know a lot. I’m trying to think there’s something that’s on the back of my brain about something. A lot of people they just they. They walk constantly and so they need the eat constantly Tens of calories and that’s a challenge. But yeah i. I have been following the the mars rover perseverance. Because i find that fascinating. But i seriously think our final frontier of exploration is actually the brain. I think when they finally figure out more about our brains that’ll be a will be on. Its i think that’s a long way off because it’s just it’s such a complicated oregon and it controls everything. Yeah you like. You were saying people. Don’t most people that have not dealt with somebody daily with alzheimer’s or dementia don’t they just assume that it’s just forgetting like they have like they lose their term memory. And so yeah no they forget how to breathe. That’s usually how a lot of them into the next world. The gal talking to this morning her mom went to sleep and didn’t wake up and most likely because her mom was in advanced alzheimers her brain just forgot to keep breathing and not an ugly way to go most of us in her sleep. But it’s just it’s just it’s a. It’s a horrible disease. And i’m really starting to think that it’s a lot of lifestyle choices. I think they need to like. Stop trying to figure out how to clear the plaques and tangles out of the brain and figure out like if they say you originally they said oh. You’ve got alzheimer’s like ten years before you start showing symptoms and now they’ve backed it up towards okay so if i have. Alzheimer’s is started showing up. When i was in my late twenties early thirties trouble but like my grandmother. My paternal grandmother got one hundred. Three and her mind was fine. Yeah yeah she couldn’t see can here which is not good for your brain. I think that is what i think. Once she was mostly blind from glaucoma and then she just became very hard of hearing an going to have to talk to an audiologist. One of these days. In era gawker. I not understand what it is about hearing aids people so resistant about Because i cannot imagine living mostly blind and extremely hard of hearing that’s like solitary own brain not visit her cognitive in so. I’m just convinced that that was not definitely not a good thing for her. And i think she might live longer She had she insisted on living on her own so she one hundred but while yeah my poor. My poor aunt got the brunt of dealing with her wasn’t a caregiver like you are. She would take food and transport my grandmother but she she she dealt with it for a long time and she was very tired but We live with my grandmother for three months while our first house being built. And i’m kinda sorta convinced. The way she ate was not enough protein and it may not also been enough calories to feed her brain. Wow so i really think it’s lifestyle and chemicals and just stuff so i don’t know maybe someday somebody will hear this and go. Yes she was right. That podcast. You said you immortalized your mom by writing a book because we were not able to have a service for my mom because she passed away right at the beginning of the covert pandemic nirim.

00:45:09 – 00:50:01

Not that i’m saying it was unnecessary hysteria. But it was at the beginning when nobody understood doing on yes we got past a year and still no nothing. She passed away a march thirty first. The flask tuesday of april in twenty twenty. I did a tribute to her on the podcast. So my daughter’s voting on stories of my mom. My husband spoke stories on his mom and law. A friend of my mom spoke. I did a little bit intro. Altro miles of people know my story pretty well. ’cause i’m all here every week and i’m really glad i was able to do that. Because one she’s immortalized too but he also because i never got to have a celebration of life. Yeah so yeah. It’s crazy isn’t an older this chain so much. I think there’s going to be so positives at you know like all the isolation that caused problems with the seniors. I think they’re going to realize that. I was going to be positive. Changes that come out of the the understandings of things that they did. That weren’t necessarily good but you know they didn’t. They didn’t know better at the time. But now we i think we’re going to have a lot more data immaterial to research it’s like we kind of crammed into one year and hopefully you know they’ll they’ll realize that isolation is bad keeping young kids away from seniors with this horrible disease is not necessarily a good thing mean. That’s like i said my nephew. I’m not sure he can handle it but you know. He has his own challenges. So that’s understandable but like your grandkids. They’re just they just roll with it and that’s so great this long yet. I just roll with it. You know. I think you know maybe lots of times that they catch what we’re doing versus what we’re saying and when they see you doing a certain thing then they just like. Oh well. that’s what you’re supposed to do. That’s how it’s supposed to go and so they just roll with it. You know there’s no pushback from it it. There is a little bit of push back then. That’s okay too because this is this is new for them. It’s unknown for them. You know i’m learning. We’re all still learning. You know my mom does stephan. Life is different every day. So you know. I’m still learning. So i can’t expect them to be like let me. Just do whatever you want. And i’m gonna. They’re great but i don’t force them or expect them to do anything. Whatever you wanna do on your own is fine. But i have no expectation as far as that goes because you know this. This is a disease that nobody ever wants. Nobody but but it’s you know my mom has it so it is what it is. But there’s not an expectation for the kids do certain things but i love it that they do on probably not expecting them helps no pressure. There’s no pressure and then i’m not disappointed because you don’t that’s true you know out with the pressure on myself. Even that’s very. That’s why i have no guilt. You know because it’s like i’m going to do. my best. best is guy. I don’t have anything beyond that. So i wanna do my best. I’m going to lay it all on the table. And hey you’re going to be good. You know you’re gonna you’re gonna take this journey with us or we’re taking the journey with you. There’s no guilt. There’s no guilt that’s awesome work. Caregivers need to understand map. Yeah i just did In addition to the great needs my help book. I did a journal for caregivers guided journal and there’s like fifty questions to kind of help you stay centered you know. You don’t have to be on this ledge or that leads. Let’s let’s find a place in the middle you know you’re okay honey. You’re okay and i think for me. I have this philosophy to think on the lovely. That’s how i kind of live my life. Think on the lovely. What is lovely. What is the good report. You gotta deal with everything. But i wanna know what’s lovely. What is the good report. And that’s why i’m going to focus and so even with my mom would tell people it was not skittles rainbows or roses. Don’t bring it to her. She doesn’t need to know about it. Because when you focus on the other stuff that’s when you feel guilt. I went to dinner and i wasn’t with my mom i feel guilty. I did this. I should own. I feel guilty. You know he passed. And i was out at the movies. Now i feel guilty now. No think on the lovely. Think on the lovely like my dad. Because i care for him to and my dad passed in between me talking to my brother on the phone in going to answer the doorbell. When i came back in the room he was gone. I put guilt on myself. Oh gosh i wasn’t there.

00:50:01 – 00:55:04

When he took his last breath he was in that room by itself a e No with this guy for ten years. I know i did my best. And i said god’s thank you for for protecting me from that moment because maybe i wouldn’t have been able to handle that moment. Maybe i would’ve had that in ingrain in my mind. So i could have gone to the gill but no i’m going. Think on the lovely. Thank you for protecting me. That was not for me to see you know within five minutes before that. But you know that was i. Guess not for me to experience. So it’s like how do you find. Sometimes you gotta dig defined the good but find it find it. Crime panted for gold. Their hands for gold will make your life better goals. It’s interesting ’cause. I’ve always kind of felt like i was not there when my dad died. I’d seen him a few days before. He got really verbally abusive at the end. So it was like. I had to protect myself from that and win the hospice people call. They’re like well you know they’re coming to take the body but we can wait. If you wanna come in like ten thirty at night you know. Look i actually got the best night’s sleep in three months after that. And then i saw my mom the day before she passed they called and we we got. There is quick as we could but she left without us being there. I don’t think it remains in any different than the day before. But i have not experienced somebody leaving as i’m sitting there and i don’t think i want to. I don’t want to. I want you. So i mean i like i said i’m gonna look at the lovely in. I see as a gift doorbell rang. And i had to go down the hall and get the door. Maybe he was waiting for you to get out of the room. Maybe maybe you know. So i’m i’m not gonna give myself guilt over that i’m in thank you for protecting. My heart may literally. I walked to the door and we came back and the gentleman that was with me. Had come to see my dad. And i said I don’t see his cesco enough endow in the guy says no baby. I don’t either. I don’t either just like that. Just like that. But i’m not i’m not gonna. I’m not gonna put guilt on myself. I know i did my best. And i say thank you daddy for protecting me from that romance lovely so we’ve got grandkids center helping and you’re teaching people how to find the lovely. I love that free. I’m going to remember that. This has been a like sixteen months since the beginning of twenty twenty life has been really me all kinds of curve balls and i’m i’m ducking on pretty good man. I’ve learned some serious coping techniques and then more and then more and it’s like you know you sometimes you just have to say this is very frustrating. Great we’re going to not focus on that. That’s that’s where i’m at right. Now is not focused on all the stuff that did not happen is not happening and just focus on what i can do to to use your phrase. Find the lovely right sometimes. Read a like you said like you’re paying for gold. Yeah that’s how twenty twenty was it’s like you know my mom passed away. Everything closed down. You know then. The west coast was on fired. It was like could there be like when when is the locust coming was kinda. My and our oldest dog was he was my shadow. My stocker and he got to his thirteenth birthday. He was doing quite well was pretty sure that he wouldn’t get to fourteen by the salty would live to spring or summer of twenty one and eight. Something happened he got. He turned thirteen on november twelfth. And we had put sleep on november twenty third so and then the state closed down again in our christmas vacation two assembly got cancelled so i was like i give up. You know. it’s like yeah. There are not enough coping techniques to deal with. All of this greasy. Didn’t just get up another day. Like okay well. what can i do today. I don’t wanna wallow around in sadness and pity is that don’t feel now. I love you’re gonna remember i’m gonna have to like put it on. T. shirt you know we get a choice. I think i recognize it every day every second of the day. I’m in choice. So i get to choose. You know it because it’s our emotions that lots of times. Get us way off track and so i get to choose which emotion i’m gonna use to deal with this because i know the outcome that i want so. I’m not going to let my emotions the in the driver’s seat because that’s when i can get way off track. No i’m in control handle this situation with and we’re gonna go from like you know like i said with my dad or even was my mom you can.

00:55:04 – 01:00:03

You can definitely beat yourself up. Oh gosh why did this happen to her. You know she’s got no quality alive. What is she gonna know. All i know. And i’m responsible for is that she has lies. How am i going to help relieve the best life that she can in the state that she’s in. That’s my job other than that. I can’t change anything else. So that is what it is. You know she for while she would eat with her fingers. And say you’re not the other people may be a little bit issue. The people around her. Or i’m like hey feed messing. She’s she still independent. Use your fingers. In one of our caregivers is from ethiopia. She’s like debbie. she just east ethiopian. That’s all year right about not embarrassed where she’s at its choice. You choose to be embarrassed. That is true now. i didn’t. I never worried about mom meeting with fingers. It was the fussing over the food that she would push off. The plate should take a bite and three bites with ended up on the table. And then she’d have to clean it all up and then she take another three. Call her out her alzheimer’s ocd in. Yeah that’s a whole different face. Yeah that was not a fun phase and it now that’s not a fun base and it was hard you know it was like i don’t care if you eat with your fingers and don’t care if you’re messy has i don’t have a problem with my brain and i miss you so it’s like you know that’s kind of a family thing and you know i didn’t worry about it but yeah the fussing over her when she first over herself making messes and i would say we all make messes. Don’t worry about me for telling her not to worry about it. I’m like okay. I give up get us is. You can’t win jalloh. you can’t win. Yeah that’s that’s a different phase. I’m glad we’re we’re beyond that phase and you can do is just let them be. I mean you can’t win nope yeah is there Will is the journal. Also available on amazon yes. The journal is available on amazon. I have three journals as that are fact. I have a journal for children. One for boys one for girls and one four adults and you know the journal for adult asked. Point pointed questions. What have you done to celebrate you today. Things like what would it look for. Would it look like free to be fully supported who is on your team caring for your loved one because we all need a team. You may not be your family members but you need a team. It could be hired caregiver. It could be a support person at the doctor’s office. It could be the kid next door but you need team. Who is on your support team. Caring for your loved one. So the The one for adults ask really good questions you know that. I wish i’d probably known early on. It has really good questions for the caregiver. And it’s what is it called. So i can. I want to make sure it’s hot linked in the show notes. It’s called I love the title. I said i’m gonna. I’m gonna. I’m gonna trademark this. It’s called dementia sucks. But life doesn’t have to. I love it. We only does manage. It does not yet have to just plays right into this theme. That’s been going on for me this week in. It’s i think it’s gonna continue as we need. Find a way as families as society to help people with dimension. Alzheimer’s yeah live better with the disease. Instead of yeah instead of reacting to the disease maybe like what you’re doing it’s like this is where she’s at so i got her a teething ring okay. Great that’s like we said better than possibly causing infection on your fingers And i teach creative. You know you if you if you see everything as a challenge in you angry then you’re gonna be miserable and then you’re gonna have guilt because you feel miserable but if you see things as a creative journey let me figure out how to do it now. It becomes a chance to solve a problem. How i solve this problem. You know mom used to everything out of those pull ups. Oh mercy so you get up in the morning. She’s picked everything pull ups all the cotton from the inside all on the floor you know. That’s that’s another story but it was the alternative Arguing the right word. The adaptive clothing. That was the answer for that. But you just had to do some research and find adaptive clothing that zips up the bag so it’s like if you see it as a challenge. How do i solve the problem versus getting angry. And you know your creativity in your patients will grow a lot. That sounds like a perfect spot end. So people can marinate on that idea. ’cause i love that this is man tastic and you can tell dezei.

01:00:03 – 01:02:37

I did that right. Correct yes go. Good like i said. I’m really terrible with me. A tendency the jumble up that. I appreciated her talking to me. And when i i told my Podcast crew that. I had to log off one zoom meeting to talk to get ready for you guys in that eight year old was gonna come on. They’re all like oh that’s going to be so great. Not too many podcasters. Get to talk to kids too often. So yeah well. I really appreciate this and like i said the journals and the kids book will all be linked in the show notes. You guys can just click on it. Check them out order ’em because they definitely sound like stuff we need to add to our library and if there’s a second book or a third or whatever let me know ’cause i like to shout out these kinds of these tools that only caregivers like us can create because absolutely wonderful. I hope you enjoyed that special conversation. With giuseppe she is the inspiration for the book. As is deborah mom. I fear that as our population ages. We’re going to have to really help. People learn how to have multi generational caregiving households. Hopefully we can avoid that but until then be sure to check out the book and share this episode with anybody. You know that’s got children tweens whose grandparents are starting to have issues with alzheimer’s or other cognitive issues. I would appreciate it. Tremendously coming up next. Week is my conversation with ed park. The founder of neuro reserve. I thank them again. Forced sponsoring this podcast. Be sure to click the link to get a fifteen percent off of all of your orders. I’ve been using neural reserve all summer so about three three and a half months and i promise you it works. I know this because my sugar cravings have greatly diminished. If you’re skeptical. Now i guarantee you. You will not be skeptical after next week’s conversation with ed and before i let you go. Please sign up for email newsletter. We’re going to be adding more information and a lot more behind the scenes things. I don’t have time to put on social media. And i know you’ll get a huge benefit out of it short and sweet and i don’t spam you and as always i’ll be in your ears again next tuesday.