Dementia Needs are Human Needs
00:00:00 – 00:05:05
Much of what. We call negative behavior in those living with dementia are expressions of unmet needs. Someone who wanders may need more physical activity or stimulation when someone to participate in something we think enjoy. Do we ask why or have we expected them to accept a preprogrammed activity. People living with dementia still know what they want and how they want to live. Unfortunately their disease makes for them to express themselves in a way that we understand. We need to find the empathy to understand their needs and address. Those needs with person. Centered care we’re all human beings with human needs. Dementia does not change that if your confused by their reactions and responses ask yourself. How would i feel in this same situation. What would i want resist. The urge to feel pity and sorrow respect and dignity will go farther towards ensuring them an optimal life. This episode is brought to you by caregiver. Chronicles and eight week online course covering everything from diagnosis through hospice for more information. Use the link in the show. Welcome to fading memories. A podcast with advice wisdom and hope from caregivers who have lived the experience survived. Tell the tale. Think of us as your caregiver. Best friend with me today. is donna merrin. She is with the new dawn. Dementia alberta forget the last word on dementia understandings. Www dot new dawn dementia dot com. And that’s where i hang out. I can relate so thank you for joining me today. Donna suggested that we talk about or talk on the topic of dimension needs are human needs and that’s not a topic we’ve had before so thanks justin it and coming on today. Well thank you for having me. I always appreciate it. Always appreciate a chance to provide some guidance and You know the things that i suggest may work for some of the people all the time or none of the people some of the time so it it really has to be key to what your loved one. Or you’re a resident. You know if. You’re a caretaker at A structured community. It really does depend on a their level of dementia. And also just the person themself. So it was true muslim podcasts started. I was looking for ways to connect with my mom in the suggestions that i had read didn’t work. I don’t know if it was me. Her just wear. She was added the alzheimer’s. But i tried and i’ve learned a lot more since she passed but which doesn’t help her at all. Then i try to share that information so china’s come across the topic or design on the topic dimension needs are human needs the obvious but have you thought well so how i came upon it. Actually you know this is something that there is a paradigm shift right now and dementia care. That’s sort of Drilling down maybe a little bit deeper for as you know what. We always called behaviors behaviors. He’s a wonder on yell. She doesn’t like to do activities. And we label all these things behaviors. And they’re actually an outward of needs that aren’t being met and to answer your question the way this topic came into my head. Was you know if you look back on this year of our those of us without cognitive challenges If you look back on this year off the situations that we suddenly found ourselves and and some of our reactions to those situations the underlying needs that spark what we. I’m gonna call it a behavior. You’re in this podcast. I’m not crazy about the word Responsive reaction might be better but for simplicity. We’ll say behaviors so what you see a lot of times that we label behaviors are actually an outward expression of frustration or disappointment To that example. I did post an article on my blog last week with of this subject matter and i would like to ask people who you know. Maybe frustrated with The behaviors the responsive reactions of you know maybe a loved one.
00:05:05 – 00:10:03
They’re taking care of. I want you to think back to some on your own feelings with this pandemic because the underlying human needs are the same so all of a sudden about a year ago we. Some of us found ourselves under You know state guided Lockdowns and so ask yourself or you know the person who’s frustrated because maybe you have a wanderer in your community. Ask yourself when that lockdown occurred. And maybe you were working from home or out of work. How many times did you kind wander around your house looking for something to do. Maybe finding nothing to do or worse yet you thought. Hey i’ve got a great home improvement project. I’m going to be home for the next three weeks. I’m just gonna do this home improvement project and you couldn’t find the materials to do it or okay. We’re locked up here for the time being and it’s cold out side. I’m gonna make vegetable soup and baked some bread and went to the grocery store. And guess i didn’t have the ingredients. You need it. I’ll bet that brought about frustration brought about tremendous frustration. You ready to just punch the walls or you know you had a feeling that you couldn’t finish a task at hand. Maybe you started to paint a room. You went back. They couldn’t get the shipment of you know the rest of what you needed. Ask yourself. i’m not to preach. This is kind of soul-searching podcast. Ask yourself how did you feel. Did you feel frustrated because you couldn’t complete a task. Did you feel powerless. Were you know like you just wanted a keiko wall because you walked around your house you done all the laundry you had. You could possibly. Do you know probably most of us. If there was ever a time we were gonna put our house on the market for sale. This great time. ’cause it’s clean and shiny and we’ve had but the point that we need to get back to is that we all have triggers. We all have triggers In our daily lives the difference between someone who is not facing cognitive impairment or cognitive challenges. And those of us You know who are working with people with those challenges is that we may have the same triggers but we don’t all still have the filters to trigger that reaction the forward thinking or the ability to reason to temper that reaction. So what happens if your in you. And i are you know. I don’t know if i gave this example. Last time. I was on but i know happens a lot. You know. you’re in line at the grocery store and all you wanna do is pay for you. Know your Milken yolo for brandon and get home. And you know there’s someone further down the checkout lanes for ten items or less who has done their shopping for three months forward Is now arguing with the manager. Because the machine won’t take their coupons from nineteen eighty six and the whole line is backed up. I mean do we feel happy about that. No you start to be tapping your little foot and you know you have those reactions. Do you walk up to the one and scream at her. What is wrong with you or hitter. No problem hopefully not hopefully not those who are filters. That’s our instantaneous. Forward thinking boy i. Would you know really just like to tell you what. I’d like that lead to do those coupons. But i’d get in trouble for me so i’m not going to do it. That’s our filter. That’s our filter kicking in there You run into somebody that you know. Maybe you’re not fond of yeast. Stand there in the street and tell them exactly what you think about them. Probably not no. I’m not saying that’s a good thing or a bad thing but there again. The filters are the same and if we felt trapped in our own homes at times during this pandemic or still feel trapped. Think about what does it feel like to live in a community with a keypad on the door in the keypads band thing. I understand that communities.
00:10:03 – 00:15:03
Feel the need. You know to keep people safe. But it’s there and we can deal with that frustration out. Kay i’m trapped in my house right now or that feeling of it. So a little forward thinking Dr netflix subscription. You finally maybe started writing. That novel lynch started in one thousand nine hundred seventy two and you know. We reached deep to to try and quiz station. Someone who has cognitive impairment doesn’t have the forward thinking to say okay. I’ve got this much time. When i can’t go here and i can’t go there Reasoning ability. What would be the best there because one of the things that dimension does in addition to eliminating or erasing memories is it also Short circuits the ability to have that forward thinking in that reasoning. So when you see someone you know what you want to try and do is drilled. What is the underlying need. That’s prompting them to act out to call out to wonder you know and we need to look further. I think jennifer than just We as a society nuts or you. Very kind podcast listeners. But society in general you know again with that paradigm positive paradigm shift in dementia care We always when i first became involved in nursing in dementia care. it was. Well see what they need to. They need to go to the bathroom. Do they want a snack. Do they need a blanket. Do they wanna go to bed. Okay all very good things check. Check that check this. Check that what we’re finally starting to realize though is that because these are human needs we need to look further than that Do they have a sense of purposefulness in their life. Do we need to feel purposeful. We’ve been again compare the two. We felt a little frustrated to say the least that we couldn’t complete task. Something simple as you know. A dinner recipe couldn’t get the ingredients know. Couldn’t find the pain and we got frustrated with that. It’s a sense of. I mean not in. Our sense may be not as dramatic. But it’s a sense of failure. I couldn’t complete this task. What good emily now. I didn’t have some of those feelings during well. We’re still slightly in the pandemic. Were recording this today. January seventh time in california and. I’m pretty sure that might be michael’s closed again frustrating ’cause we’re taking down the christmas decorations and i need some hydrangea blossoms for a vase. That i’m repurposing. Four foot tree is and it’s like okay. What the one thing i have found during this and this extremely long pandemic we’ve been living through. Is you know my family. My husband and i our daughter and son-in-law you know everybody that’s employed still employed. Everybody’s still healthy. We’re very blessed so you you have this frustration of while i can’t i can’t just pop over to michaels and get whatever or just rows around and pick up whatever i want. Because they’re close it’s frustrating any you browse online and that’s not quite the same because you wanna be able to see it socially colors and things so you think well okay ellis’s temporary you know i’m blessed you know. We can be out of work or struggling food on the table. So i’m not gonna complain. It had gone all the way into the end of november. When the oldest dog passed away that i looked at my husband and i said i am out of coping techniques coping techniques. Aren’t working anymore. Her and it and it took a lot of self restraint and acceptance to just be like. I know this is ten like hated it. When people wanted his pregnant people said this just temporary like nine months is like me better not so temporary. It’s kind of a long temporary well. We’ve exceeded that now with the pandemic. So you know i could rationalize we can have whatever food. We want almost of so really frustrated. I can’t get my ben and jerry’s frozen yogurt that i could get for years. I don’t know what the heck happened is like what the hell people just yogurt come on. That’s like a little simple thing but for the most part i can eat whatever i want. You know the houses warm or cool but another time of year got dogs.
00:15:03 – 00:20:02
you know. we’re doing great but yeah it’s it’s hard. You cannot rationalize like that with somebody whose brain is broken. One thing. i’ve been telling people a lot lately is yes. It’s frustrating but you’re trying to make them understand just like when you try to rationalize the two year old. Anybody that’s done that knows. That is just a stupid futile thing to try and do and and there’s a lot of people don’t like comparisons to children. But that’s how their brain works. So i like the way you’re tying into. The pandemic has man that is really i opening well in one point. Kind of just an aside from the pandemic Situation is that you know when you you just said don’t like when you compare people with dementia two two year olds. I think that what what we need to look at when we do back is it’d be understanding. I know that you’re not saying that someone who’s seventy five or eight years old with dementia should be treated like a two year old. We know that’s not correct because these people god bless them have lived productive lives. They’ve contributed to society And they’re not babies and the but the thing that we tend to miss. Maybe it’s because we’re worried about how the politically correct implications of comparing someone with dementia to toddler. But what we have but the fact of it is no. They’re not todd they’re functioning adults. Who deserve to be reaping kindness. And you know the security of their old age however if you look at at it from a neural muscular standpoint if you have a two year old or you have a you know three toddler whatever they are also lacking in forward thinking skills have not been developed yet. Reasoning ability probably has not been developed. Yet you know action reaction has not been properly thought out. It’s developing and you have a young child from a neural muscular standpoint. They’re going up that learning curve right. They’re learning how to use a fork on their learning how to drink without spilling all over themselves. They’re learning they’re learning curve. Going up now you look at an older adult who has dementia through no fault of their own one of the things that This underlying disease in the symptoms of dementia do is that they Decimate the areas of the brain that store memories and as the dementia progresses their ability to reason through a situation is diminished. they’re forward thinking skills are diminished from. You know. I say neural muscular because their capability to maybe hold maybe maybe not but some who have difficulty you know picking up a cop and drinking it may need a limited cop maybe with handles I prefer to call it a link-up rather than a sippy cup The end so what you have there is. You’ve got you know a younger child from a neuro muscular standpoint and just development of ’cause action and reaction. If i do this this will happen. They’re learning and they’re learning curve is gone up this way but you have this monster collection of syndromes that we call dementia underlying diseases that produce dementia. And what that’s doing is it’s tanking those abilities so their you know. Their abilities are going down down down to no fault of their own while younger child is they’re coming down. The younger child is gone up at some point. Yeah you know what those two dots are gonna you know. Cover each other. A criss cross on that graph. So i didn’t mean to get quite so aside with that would it. It’s interesting to me because you know if you look at it from a standpoint of this where this person is at this disease has taken this from them and maybe if you do look at it as don’t say child how would i handle this situation with someone else who didn’t have the ability to reason.
00:20:03 – 00:25:08
I think you know it takes a lot of the frustration away of someone my age or your age looking at a parent and saying what is wrong with you if we understand what is wrong with you is that this disease is kinda decimating you. I think people don’t understand especially people who haven’t lived or cared for somebody with alzheimer’s or dementia they think it’s just like forgetting short term memory They don’t realize that the long term memory gets all scrambled up. They forget how to eat. They you know they get how to use the bathroom. And not pretty. And i think when people understand that it makes it. Maybe a little easier to understand that. It’s not just reminding them or putting post it. Notes on things are man if that would work that the well You know so. We talk a lot. I talk a lot about what’s wrong with this picture to solve our some things. What are some things that we can do to maybe help them to relieve some of that frustration. So if you look at. Let’s take for example. The the person that just walks around the community all day long. That’s all they do is walk. Will number one maybe. Has anybody thought the fact that maybe this person just likes to walk. You have somebody who does not have cognitive impairment who walks two miles a day. We say well. Isn’t that great look at him. He’s eighty years old. Walked two miles a day. What health conscious individual that scene person with dementia that logs two miles a day at a community They’re a wanderer. Why is that. Are we giving them the right amount of stimulation. You know one of the big buzz. Buzz phrases is. You can’t over stimulate. We shouldn’t over stimulate anybody anybody’s gonna get little. That’s enough so whether you when you were a child and adult whether without dimensional over-stimulation everybody you know the human body wants to find balance that that’s your thing than we’ve been figuring these things out so you need to find that balance of appropriate stimulation appropriate activity to which point you know again. Because they’re not children and they’ve lived lives to me. It’s human decency to say to them. What would you like to do today now. I know that’s not possible in every community with every resident in every situation. But if you have someone who’s maybe been getting a little aggressive you know. They’re a little bored or weepy. Teary ask them that they would like to do today. Rather than approach them with you know your preprinted activity calendar and look joe. You know we know you used to be used to work for the department of natural resources and today we’re gonna take a walk in the park because you like to do that. Maybe he doesn’t feel like another art today. It antibody as joe what he wants to do rather than presented. Give them give them back a sense of control you know and we all know. Keep the choices limited. I don’t dispute any of the very good literature in any of the good methodology. That’s that’s come along the good stuff. So yes i agree. Keep to you know you’re not just gonna walk in there and say hey. What do you want for dinner tonight. That’s not gonna work but give them choices. Keep them feeling as if their Their opinions matter because they do if you want to take care somebody and make them happy. Ask them what makes them happy. And yes they may come up with some really. You know off off the planet off the wall things that they wanna do we as you know with our thinking skills and our professional experience take that off the wall thing or in your our opinion that off the wall thing that they want to do today. What can you extrapolate out of that that we can do with them. That’s a really good idea. I learned offering cuyler. Sorry now go for it. I learned i think too late. My mom in the last ten months of her life was getting combative and one of the things. When i look back you know of course you look back with. Vision is twenty twenty which is better than my normal vision. Anyway i would. We went to the her neurologist. Who has she was fantastic doctor because she spent a lot of time with the patients which meant she was always behind so they would tell you to show up.
00:25:08 – 00:30:02
They three show petit forty five and you might get in at four. My mom didn’t tolerate that. So i would just say check her in and we would go across the parking lot and get something to drink or maybe a snack or whatever on the time of day. Last time we did that. I asked her. Would you like diet coke which was normally her drink of preference or ice t. o. You have whatever you want. Okay i’m going to have ice tea. Do you want diet coke or ice tea. And i she went around. Basically got the circular answer. That wasn’t an answer. Don’t worry about me it’s fine. You do whatever you need to do. Other than the and it was like this is really frustrating. You can’t even give me an ab answer. So i stopped asking. And i realized too late then finally just said. Do you want diet coke or iced tea. And she didn’t give me an answer. And i obviously didn’t. I did get her. A drink is then if i had just presented. Oh here’s the diet coke you for. Or here’s steve. I might have been. Oh here you go. I wish i had been smart enough at the in the moment to realize that even though she couldn’t give me an answer that if i acted as if she had given me an answer that might have helped her. I mean she was fine that day. But i realized because she was getting combative and she wasn’t you’d give her you know yes no question and she would say oh. Don’t worry about me. That was her favourite saying so annoying. I’d love to not worry about you honey. But that’s not gonna happen and this thing about it now is frustrating. Well and please don’t beat yourself up too much as you say. Hindsight is twenty twenty. But let’s again. Let’s pull some positives out of that jan. You still went and took your mom and rather than tried to have her. Sit in that waiting room. You had the heart and the kindness to say. Let’s go get something to drink so she still had that outing. So i i still give you kudo points for doing that. What i suggest to people and you know against so much of how we work with our dementia loved ones or dementia clients in long term care. It’s you know it has to be based on on what level they’re at When someone gets to a level where they can. It’s difficult for them to even make a to choice of decision. Then you know if they can’t signed between melody want the blue dresser readdress readdress today. Then go in there and hold up the readdress and for their dignity. At least say this is very pretty. Is it okay if we put this on you today you today. If they say no then you take the blue unsafe. Oh good thing. I brought this one then and keep it short. Okay will you don’t want read one no battle here. There doesn’t have to be a reason. It could be their favorite dress that they warned everyday for the last. You know you you had to sneak it out. While they were sleeping to launder it they love it so much and one no. I’ve had enough that one. Get it out of here. Okay fine so what you wanna do it again. My thoughts on. When i wrote my blog post about mention needs or human needs is we need to look deeper than just. Do you need a sandwich to. You need a toilet. Do you need a blanket. It’s that feeling of dignity and their own self respect that they can make choices and you know. I think if we look at behaviors come from frustration. You know if if we are going to make a neural muscular comparison to a younger where the brain function is at with. Say a younger child who is not yet developed social or thinking skills. Why do they have mountains. They’re frustrated they don’t understand what’s going on. They’re frustrated or they’re tired in seoul when we have older adults that have dementia contributed to the world. Maybe they’re going to get depressed and they’re gonna act out if every day we go in and we say we know what’s better than you. What’s best for you. You know we’ve kind of become in with all the goodness of heart in the best intentions. We’ve kind of become helicopter caregiver. She know that phrase helicopter appearance. We’ve behind there was no made. The environment is safe as possible.
00:30:02 – 00:35:03
It like them. Try things you have. I’m not gonna ingram. Bite my tongue and not mention witch major senior living provider. This is but there is one out there. A very big heavy hitter who does not allow fresh flowers in their memory now. Okay some plants are poisonous. Lot of them aren’t could you not do a little research and find out which ones you know. Sorry to have to tell you this marigolds. Or edible through so are encouraged that but somewhere in the you know in the whole mix there. Is that beautiful lady. Who ran a flower shop for sixty years. Who has you know plastic flowers in her apartment now so we need to balance out that dignity aspect of it. It all gets down to a question of you. Know dignity repetitive questions. That is probably you know when. I do personal consultations and i. I kind of do those with families supposedly by the hour. I’m not really a clock watcher. But the reason that i think those are important is again because dementia is not a one size fits all type of thing and the personal consultation you know if not from me than than find somebody else will do with you especially if you have your loved one at all find out what makes them tick because frustration is even with repetitive questions. They might be information seeking and they truly don’t have that compartment to store the answer you just gave them so rather than ram pop your own frustration. I’ve answered this ten times in the last thirty minutes. They’re going to feel that. Hey they don’t understand that yes they just asked the question and yes you just answered it. They’re not trying to drive you crazy. They just don’t have the capacity to internalize that answer. So you can find methods again depending on what level of dementia there at but whatever method. You used to try and help them feel secure that they know the answer to matt do it in a way that empowers them. What time is dinner. Lead-time does janey get home from school. Give them a little kitchen timer. Set the time. Dinner is going to be ready in forty minutes. Use at the time on that little. You might want to avoid a buzzer. That’s like eight times. Said it gives them the timer and say mom. I’m i’m doing ten things right now please. Could you help me with this. Could you do me a favor when this when you hear the chime. Let me know. Dinner’s ready or better yet. Let them help you in the kitchen. You know sweet lady or sweet gentleman. I know a lot of older gentlemen who loves to cook young guys too. But i don’t work with their dementia issues. All black men male or female that have liked to cook. And you know. I hear sometimes from people well. I you know my father-in-law lives with us. And i just don’t know what to do with him on. It’s time for me to cook dinner. Or is he a potted plant that you need to find something to do with them. You need counter space analogy. Let him help you instead of trying to keep him out of the kitchen bring him in to the kitchen somebody that has you know an yes again. Put your safety precautions eric. There’s boiling water on the stole for anybody. You don’t have to have dementia knicks on on the back burner so it’s not just. Can you know things you can you can do. If you take the same amount of energy that we all feel. I’m not putting myself above any of this. I’ll put my name at the top of the list. My learning curve since i got involved with dementia care has been up and steep at times so no i am. I’m not saying. I know everything what’s wrong with you. I’m saying i’ve been in the thick of it. I’ve maybe figured a few things out that might help people bring that person into the kitchen if they’re asking you the same over and over again. If you’re only last resort is to keep answering it until they’ve distracted with something else can just answer the question. Don’t get into. You just asked me that. I just told you that. Or you know your voice starts inching op an active because number one.
00:35:03 – 00:40:02
That’s gonna frustrate bam like. Whoa what’s wrong with you. I just asked you a simple question and to it’s going to make them feel bad. Most people with dementia unless the imf got complete anna signals e which is they’ve got bloom in dementia no concept of the fact that something’s wrong that’s not all common in dementia. Most people know there’s something wrong here in the feel embarrassed and they feel is shame so that when they’ve asked you that same question over and over again and you being a human being snap at them or just refuse to answer it. It makes them feel bad. And what happens when you feel been. You tend to retreat or you’re gonna start getting nasty yourself. Don’t tell me young lady. I raised you. You know. i used to hear that all the time i raised you. I know you better than you know yourself. Well probably may block noble right now. We need to figure this out. I have a past guest who came to the realization quickly but it was temporarily painful. Her husband was asking the same question over and over and over and she you know after the sixth or seventh time she side. I’m assuming the shoulders slumped and she rolled her eyes and when she looked back at him he physically looked like she had slapped him. This is according to her and she realized in that moment. no bless. Those people who lightbulb goes on a lot faster. She realized that if he could remember the answer he wouldn’t ask over and over. And if he didn’t have alzheimer’s he would be able to answer the remember the answer and not ask over and over in so whenever she started feeling herself get frustrated because her husband was pretty sensitive to body language. Like my mom was She would just breathe and remind herself if he could remember he wouldn’t ask and that kind of helped give her the empathy and the compassion to you. Know really tamp down her frustrations which kept things calm. She managed to keep him at home his until he passed away. And that’s not always easy advanced years and especially if a woman taking care of a man you know. She did have helped but she was able to keep him at home. And i think some of it was because early on in his disease. She had this lightbulb moment and she figured out some of what we’re talking about. She kept him very busy very regimented. But what within his his needs you know she. She discovered later on in his disease. That just the fact of waking up in starting the day was exhausting so she feed him breakfast in bed. Give him his mads. You might take a little nap. And then he’d get up and start his day and you know that’s hard for us to think about like you’ve been sleeping you another up well and you know god bless her because it it really is all about within the parameters of safety it. Is there life. What do they want to do with their life and so again to try. And you know stave off these behaviors before they become behaviors or responses. In addition to the basic human needs people need to feel purposeful and again to compare dimension needs are human needs when we were in this pandemic situation whether it was an absence of a paycheck or an absence of a job. When you feel like you have no purpose in life or without the pandemic you know someone’s fired or someone’s laid off you dip into you know you feel like you have no purpose in life. It’s kinda that empty nest syndrome. Although i never had a problem with that whatsoever so ever i didn’t either. My daughter was twenty five when she moved out and i thought she was. She’d been in college for five years. She graduated three months after graduation. She came down crohn’s disease. We had to deal with that and it just. It was a bumpy start to her adult life. But she’s been on her own for four years. She’s boomeranged back which was great because she moved out. My dad passed away. We put my mom and memory care. And so i was responsible for my mom and i there was one day i just lifted. I said you know what until. I don’t have to deal with your grandmother. Don’t be thinking you might be able to come home because one at a time.
00:40:02 – 00:45:08
I only had one kid so she was on her own. I was taking care of mom was like yep again i gave you a sense of purposefulness. The admit so it’s like i i knew when i could handle. I just let her now. Grandma’s a priority right now even though she didn’t live with me but it’s it’s just like you have to handle your own stuff but i laughed because i had visited envisioned what our life would be like. When daughter was out of the house which there was times. I didn’t think that was ever going to happen. And she moved out and my husband’s spent like two days i swear he like erased. Every last evidence of her beanery Deep cleaned the room that they she had slept in her room and it wasn’t long after that we did some stuff in my office and he had her room repainted. I’m like i liked that color that she had picked out a wire payment. Whatever but it was just like he just went through this weird nesting because he couldn’t understand like she’s out not in housing. Where i’m like dude. She was twenty five if give me a break ears. Parental shifting gears by in. Actually doing there now. I don’t know your husband. Broadly meet the jalen but I would look at that as his need to feel. Purposeful was a gap there. Something was missing. You need to fill that gap in feel purposeful. You need to feel needed. So you know i a lot of the responses the repetitive questions or even aggression furstration will do that so you know. Let’s look at those underlying needs. Rather than just you know wipe out the zanex without the ad van and there is a very good book out. I cannot recall the author right now. Dementia without drugs. It’s been around for a very long time. you know. And when we when. I first heard at title years and years ago i thought oh. Good luck with that but we learn. It’s been my learning curve because someone who is pacing and someone who’s agitation is ramping up. You know a chemical restraint which is what xanax or a you know then by definition it’s a chemical restraint. It’s not solving the underlying issue. That’s causing the aggression or the education. It’s not doing anything all it’s doing is yelp. You’re pretty much slipping. A mickey and knocking them out calming them down now again there are perhaps cases are not more than perhaps there are cases. Where if it’s like a frontal temporal lobe dementia. Aggressive behaviors are only going to spiral. No matter what you try to do. And they’re gonna hurt themselves then maybe judiciously. with guidance. there is a place for it. Perhaps but let’s not start there. You know we need to look at the human being the life. I think these are just my opinions. Jennifer saw you can have somebody on next week. That says duh. america doesn’t know what she’s talking about and we’ll have a robust discussion. This we move forward so you know my feeling is that everybody has the older people they may outwardly to untrained eye seem to be behaving like a two year old but look beyond that what. What are the similarities. Okay two year or human beings as well as eighty year olds human again human needs yell babies screen when they’re hungry older people dementia or not. I really nasty when i’m hungry. Say that you know or or it’s too hot or it’s too cold or you know you got an inch on your back. You just can’t get to. There are so many reasons why people can act up in. These are the main thing that i would ask people to remember please. Is it’s a question of dignity. Dementia to me. It’s been said that. Dementia robs people of their dignity. Dementia is a collection of symptoms. It’s a syndrome as an underlying disease. It’s not smart enough to know how to go in and rob a bank of somebody’s dignity the loss of dignity. We’ve done a fine job of that. All paler selves if not all of us but the general collective thought over the past decade or you know twenty thirty years since we really start looking at this has been again with the most blessed of heart.
00:45:08 – 00:50:04
We need to protect these people. We need to know. They don’t know what’s best for themselves. Yes we need to keep them safe and some of it might be you know. They don’t know what’s best for themselves. Maybe it’s not a good idea to swap false teeth. And i’ve seen it is but you know what they’re perfectly happy. Put their teeth in and they know okay. These work kind of a thing. So yeah we you know for hygiene sake and keep an eye on that stuff with the point. Is we’ve become helicopter caregivers. A you know the whole thing of Montessori dementia care is a brand new paradigm. Lynn back to cameron camp is is just has some excellent excellent Writings in views is basically. Don’t assume they can’t focus on the streets. You know in in full. Blown montessori dementia communities. They plan their own meals with with supervision. They cook their own meals on my god. Well what happens if they cut themselves. When you’re peeling carrot will what happened. Is they cut themselves. Forty years ago the band aid on it and keep going. They are still human beings. So that’s the lack of dignity. I think has come more from our well intended efforts to signal. You can’t do this. You can’t do that in. Everybody wants to feel that they have a purpose that they’re not a burden so if we can all think back to some of our worst selves during this pandemic you know grabbing grab a net debt third bottle of disinfectant spray off the shelf when you knew it was the last one and there were two people behind you in all. It’s it’s it’s horrifying. It’s the little old lady we’ve become that little old lady that takes all the napkins in the silverware out of the dining room so she make sure that she has some tomorrow. Think about your feeling. I went into a grocery store and i this was just about at where it was really starting to ramp up with the pandemic and the gross reason i never honest to god went out with a dune. Stay shopping mentality. That i need to buy everything in this. Never did that was one day. I’m in the store. It was one box of whatever it was betty crocker chocolate cake. Mix on the shelf and one can of frosting. Didn’t matter to me that. I hadn’t bake the cake since two thousand six. I thought i better get that. That’s the last one. And so you know. That’s my need to feel secure in. So you have somebody maybe in a care community or even in a private that see something and i better take that i better stash it away. That’s are mutually shared need to feel secure To feel protected you know and just in general that have a sense of wellbeing for the future that people with dementia also they have feelings. This is what you and. I know this and everybody listening to you. Write us right now knows this or wouldn’t be tuned in. They’re trying but the ones that are may be just entering the field or still riding on those stereotypes in those stigmas. Think about how. How do you feel. They’re no different from you. They have what they’re lacking is the ability to control their response but the needs are are still the same where all people they are really no different so keep them safe but we don’t need to treat them like the look at dementia as a disability rather than a disease we’ve probably violated every covenant of the americans with disabilities act for people with dementia. You know what. What have we done to assist them to continue to function in society. Not a whole heck of a lot. Now i’m i’m a big advocate that in my husband used to be on our city’s planning commission and there’s things the way our nate suburban neighborhoods predominantly are laid out. It’s not great for community. It’s not great for age aging america. You know you’ve got your your starter hoods and then yeah you keep moving up until like our old house was a mile uphill for even got to main road.
00:50:04 – 00:55:01
It was literally two point eight miles from the grocery store so not really walkable especially because the last mile was up hill like a steep hill. And you know so. You segregate people almost based on income. So that’s not good. We were in a neighborhood in colorado. That wasn’t large neighborhood. We were visiting and on the outskirts. Like close to the main road were condos and any move in a block or two and there were townhomes and then small houses and then you they just kept getting bigger so it was like everybody was in the same neighborhood discounted dependent on which street. You’re on if you were in the executive mcmansions or if you are out close to the main road in the you know the first time homebuyer condo and i said this is what we need you know everywhere and we need to be. I read an article on how the suburbs are not great for aging americans because we can’t just walk everywhere which because we moved a year ago and we move close to downtown. It’s you know hopefully twenty one. We’re gonna find our new forever home or second forever and you know it was exciting because i will walk to the park for music in the park and walk to the restaurants downtown. All is gonna be exciting. Yeah while so much for that. I’m not even sure we’ll be able to do that before. We actually relocate again back to the grocery store. I can walk to the yogurt place. Since i can’t get ben and jerry’s at the grocery store you know it’s like it’s a whole different atmosphere too close to my neighbors kind of on a busy street not far on that but it’s really nice to be able to walk places no not that i can’t drive a ride my bike but no and they I don’t know what they call him. But those bubby dots outside of stores to alert visually impaired people that they’re about to enter into the street. Oh my god. Those things freaked out my mother. I would do my best to walk her around them does she would get on whatever they call those the braille dots. That alerts you to the side of the street is year. They’re not you know you kind of lose your balance a little bit and it just freaked her out a awful so it’s like we need to really start thinking about our communities. Our cities our suburbs born aging america. And you know put assisted living communities near schools so that you’re not segregating the elderly from the young people. Maybe have a library close by so that they can walk to the library and the kids can walk to the library. And you can have activities of the library for seniors and the kids and it’s like we really need a humongous revamp of city infrastructure. Which you know. I’m in california. If it doesn’t burn down at might fall down from an earthquake knock on wood. Hopefully dig holes. But are you in san for here. I am fifty miles northeast of san francisco. Okay so There is a very big faultline. That hasn’t done anything for. I don’t know forever and ever so often you’ll get what i call a little earth burp since i think that was an earthquake. Moving on you know. It’s not that big a deal. I even actually missed aloma prieta in eighty nine. I was driving my car up the road and all of a sudden it was like. Oh we we’d been married a month. Mike holy tweeted. I think i got a flat tire. Better pull off the road. Because if i drive on it on the rim i’m going to have like an even bigger expense and probably can’t afford any tire so that are the gas station. Check all the tires. Nothing’s wrong with the tires. It back in the car drive a couple blocks in the radio station goes on like what the hell is. Cars like two years old three years old at the time. Like what’s going on again. Home to our condo that we were renting my husband who is originally from staten island. Pull our well back a step because it’s kind of a cute story. Our neighbor was on maternity leave. She opens her doors. Goes had an earthquake. And i’m like we did and like i’m you know i’m from california earthquakes. Whatever you know. It’s no big deal. My husband screeches into his parking spot jumps out of the cars. Like are you. I’m like what the hell he’s like. He’s like freaking out. I go in the house. Nothing has happened like one. Little thing had fallen off the shelf. No problem look at the news. Bay bridge broke the ends of the nimitz freeway. The freeway collapsed on top of itself. You know god forbid the the super bowl baseball game. I’m not see.
00:55:01 – 01:00:02
I’m missing my world series series out. Yeah any onscreen. The oakland team in the san francisco team that was like evacuate out of there and it was like. Oh i guess it was a big earthquake so i seriously missed the whole thing. Well you know it’s if you think about to to you know. Actually i will confess. I actually spent The early part of my life growing up on stanton island Your husband and i probably understand that Freak out mode is kind of you know it’s like yeah that’s how we get up in the morning if you want to be heard shouting the next person. However i’d been in michigan for many many many many years now so hopefully. I’ve kinda calmed down a little bit from that. Initial you know East coast just nervous energy. I can’t this michigan were too nice and folksy and calm down here But if you think about it that initial sense of panic again human that initial sense of panic we were able to reason that out own amman to someone with dementia Yep the app. The they’re doing a fire alarm drill all. That’s not you know so the needs are the same. It’s just how that’s a perfect example. You just gave jennifer. You knew you were like yeah cool. I’m i’m fine with the assignment what this is. Your husband who is not accustomed to it was like all what is happening. So it’s how how we process stimul- stimulation and stimuli and all that and because we’re able again forward thinking rational thinking to pull on our past experiences in same beyond general shelton little middle tramway. There i know what this is in carry on but again it was that unknown situation. Not just your husband will probably a lot of people who never experienced it freak out so that human emotion doesn’t go away if you have dementia and you see all the changes that these kind people have gone through with you. Know the the social distancing in the win we could go on and on with the window visits Bit’s gonna ramp them up a little bit so again. Sense of purposefulness is what we’re all looking for our sense of security. How did we feel when you know. We didn’t know when his freeze handler. We gonna get a small business loans to come and help us. We don’t know we don’t know we don’t know and it. Those feelings inside of anxiety and exasperation lucky for us. We knew how to deal with them. But we don’t we always have to remember The dignity is is one of the key elements of it and whatever we do in again. It’s not to make fools out of people with dementia. You and i hear that a lot while. I’m not gonna lie to them. I’m not going to make not if they’re reality is. Abc your reality and reality itself may be xyz but if they’re reality is abc and you join them in that reality you’re not making a fool out of the mets very comforting to them and i think it’s a little easier to maybe if you’re in the reality figure out what their needs are what’s triggering this response or this this behavior. Why are they shouting right now. Because they feel like they’re not being heard like their opinions don’t matter and we’ll need to feel that way. I have a perfect example for being in their reality after my dad passed away and i was visiting mom memory care most of my listeners. Now that i would take her out to the park to watch kids in the pool or the library or wherever the kids congregated us where we went and she was always super concerned that her husband knew where we were going and i knew i guess mom dad knows where we’re going to like roll my eyes. I guess dad knows where we’re going in one day and he was asked me that like five times in her room to the car. Which wasn’t that far by the time we get to the cars. Like dear. god do. I want to do this. And all of a sudden it dawned on me like. I’m not answering her question. I’m saying yeah. Dad knows where we’re at but she think i didn’t realize this part at the time she thought it was her best friend so when she asked my husband know where we’re going and i said dad knows where we’re going didn’t answer the question. It didn’t even make any sense. It was difficult.
01:00:02 – 01:05:04
Because i could never talk to my mom about my dad. And you know it’s that was hard especially not. Shortly after he passed away it was like. Oh this is fun. I don’t have anybody to reminisce about my dad with but once i stopped answering her as the daughter and yes dad knows where we’re at and she’d be like what do you say my husband and like sometimes they’ll be like no is he lost and you know and then she’d say something sarcastic because that’s kind of the relationship they had or she would say asked she was always asking me about him was really. It was a challenge to not feel my my way about dad and just think about him is were husband. My favorite store has taken her to the dentist. And she’s she was just griping and moaning in iraq all the way from the memory care to the dentist appointments about ready to push out the door and she’s like. Why is my husband. Nothing i think he was the biggest. Sob because i was taking her to the dentist and it was difficult because it was like if he wasn’t dead he won’t be taking you to the dentist but i didn’t say that to her is obviously that wouldn’t have benefited the moment and i. I said something. Like while in in my because i was frustrated. I said you know. I’m just trying to help. Both of you is that okay. Well yeah but she’s still griping about him and then she looks at me and she goes well he is paying you right and i said so far have gotten paid my supposed to be getting paid and then she laughed and it was like god looks. We’ve diffused situations and it was funny to me that she thought i get paid. Her friends should get paid for taking parts of the dennis. No it’s it’s one one way to handle it and you really do again for all of the tips and advice that i can offer a again. My favorite thing to tell people is nobody has the same set of fingerprints on this planet. So i’m not going to say that your husband with dementia is the same as her brother or her father with dementia. But that’s interesting because she your mom. What i’m hearing is that in that situation. Your mom was being. She was asserting an opinion. My not doing this. Where the heck is he that you know. My neighbors sister has to take me to some a non relation has to take me to the dentist. she was asserting herself in in that situation rather than just oh i guess you know you’re you’re the one. This is the way it has to be so good for her. One thing that i might have done with that And again twenty twenty. Why isn’t my husband taking me. Well i’m not. I’m not sure. I was just asked to take into the genesis. Where do you do. is he working today. Kinda give her an even if she bills narrative that’s completely false. No he had passed away obviously but even if they build a narrative. That’s not reality plane for today. Go if it will wide. I don’t know why he me. What do you think he can. You should too choice things. Is he working today or maybe did he have some car trouble today. What do you think and let them express themselves with you know to to allow someone just to be who they are and not constantly remind him. No you can’t do that. No you can’t have fresh flowers in your room. Which to me is. I love flowers in milan and and outdoors and to me. That just a no. I would be. I would be the one climbing out the window. They’d be on the phone to my kids saying you. Mother climbed out the window to pick dandelions That there would not fly for me. So you know we’ve taken away so much. I think the least that we as a society need to start doing is giving them bam themselves back the the little point. You mentioned about the braille bumps on the sidewalk eight those things. That’s true that but even on the side of an elevator panel where there’s braille or we have closed captioning for for the hard of hearing if that’s politically correct. I apologize if it tonight hearing impaired we’ve got braille. We’ve got closed captioning. We’ve got wheelchair ramps we’ve got handicap accessible department of motor vehicles. These wonderful wonderful things. I’m not saying we shouldn’t have them but again where the cognitive rams someone who’s dementia is still an appoint where with supervision check ins.
01:05:04 – 01:10:04
They may be still be able to live in their own home in their own neighborhood. Where are the cognitive rams to help them. Walk down to the little data or the grocery store and do their own shopping. Or you know go to a launch an or go to a restaurant and instead of opening a restaurant while you see a words these. What are these letters. I see black things. I don’t see food have you did. And i think it actually wasn’t california was dementia friendly restaurant and on wall they had these sumptuous pictures of their entrees and the ad menu that mimic a picture of what looks appetizing. These are all cognitive. Ramps that i think will you know again would supervision help to restore dignity. Because we’re we’re not so different. We really aren’t. I’ve been the one behind the lady in the grocery store. You know. I probably been the lady in the grocery store coupons from one thousand nine hundred ninety six in. Oh sorry about that you so yeah. We all have those reactions but with dementia. They can’t. it’s not that they can’t control their reaction. They have the tools to do that anymore leaguer given the tools to do that now. Somebody has physical aggression do some time with him as an activity. Make a birdhouse given the hammer. I’m not saying and turnham loosen the community behavior here. Jackal find up to do. He’ll find somebody hit with this find a craft. We’re where you can sit with them and let pounded out. Let them make a birdhouse. Then you hang it. Outside of his window look how productive you were looking at how those lovely birds coming or whatever you know make a wood toy for a a polish shelter drive or something. Lots of things we can do besides just you know. Take bill unfortunately these days. There is a pill for everything and so. That’s that’s my story. And i’m sticking to it jennifer If people wanna know my website is. Www new dawn dementia dot com. I offer the required class for credentialing as a certified dementia practitioner. And god bless you all. I would love to do some personal consultations in in see if we can make your last because sometimes it until it’s over we don’t realize these are last days with the left one so true. Yeah i highly recommend getting some one on one with people has like with my mom. She was pro at being able to push my buttons. Just like she was. When i was a teenager or young adult. When her mind was still fine she had phrases. She is and she did that. Just you know it was just designed the this needle you in Even now it’s irritating thinking about it and really good doing that when her mind was not good in. Uc can’t rationalize with her. You’re trying to rationalize. But i found when you’re an adult child caregiver to hate that phrase. They’re really good at pushing. Your buttons and i think the parent child dynamic makes it even harder to take a step a big step backwards to go. Oh yeah if i respond with. The ad knows where we’re going. She has no clue who i’m talking about is sometimes it’s easier for somebody say will don’t you see they’re doing accents like oh yeah da so one on one is really beneficial just to help you know because we’re so close to the situation you colt to be able to take a big enough step back to think about. What do they need. What’s what are they trying to do. What fulfils them. What can they still do all these questions. You’re just trying to keep them safe and get stuff done. No time for this higher thinking to that too. And i know where i’m probably taken up more more of your airtime here but the really important thing to to that point Is that you know the interesting thing that you said. She knew how to push my buttons. When i was a teenager and she still knew how to push buttons. So really your mom was still your mom. Many reactions and and in a positive sense things that people we can guide people with dementia at many levels of dementia. Get away if you’re working with someone with dementia get away from what we call you know.
01:10:04 – 01:15:01
Rational thought memory. You have something you have reflects memory. You know the old saying it’s like riding a bicycle reflex muscle memory. You also have something called intuitive memory or experiential memory which means that not just your mom but with intuitive experiential memory. It’s it’s what you what you feel inside what you pine of relate to all. I know this pretty blonde lady. And i need to tell her what to do. Because that’s what i’ve always done. That doesn’t take a lot of. It’s it’s a reaction. My kids are all grown adults. As soon as they come into my house to visit me. I start driving them. Crazy them everything. That’s in the refrigerator. Are you hungry eat this. I have this in the pantry. I have that they have told me over and over again. Mom we’re adults. If we’re hungry will eat but my i in instantaneous trigger reaction and i probably if i develop dementia. We’ll probably still do. It is this is how it it’s my trigger. It’s it’s kind of intuitive memory where you’re kind of making any sense but it’s it’s just an it’s always done it action. It’s a reflex reaction so again in a positive sense real quick we can use those reflex. Reactions reflex memories and intuitive memories. You know she was a florist. Just have to make a production out of gopher gopher walkman the wildflowers in bloom and and we don’t even have to say anything that intuitive memory. Those some things are just never gonna change a whether you have dementia or not we as people my fingerprints your fingerprints. They’re not changing. It’s just how people with dementia are living with dementia are able to maybe express their wants their needs their frustration. But you need to like we again. Need to me too. We we do. I’m still learning you know. We need to drill down. And why are they. Why are they behaving this way. In so oakley at that’s helpful and again dignity is so so important if there truly is an activity or something that they’re really not safe doing just figuring out a way of guide them around it in always make it their choice. That went g. Yeah like you say this. This really might be better than presented as the lesser of two evils. Well if what they wanna do is dangerous find something. That’s not so dangerous. That sounds better and then give them their choice. Well okay you know. We could go down to the pond where they captured that alligator yesterday. But don’t know what happened to his baby. We could go swim there. Or you’re down if we go out to the lake let. Let’s leave. That pond extends around this. You know and drive around till you come to something else. Turn it into a positive in. it’s hard to do. God bless ’em read caregiver with your at home caregiver or you work in a care community usually for very low wages. Yeah god bless them for for trying for doing this. What i would like to see. Is you know. Try things for less stress on yourself because it may take a little more time in the beginning but in the end of it all Youth restored their dignity their feeling that they are being heard and that their needs are met needs aren’t met things. Get only phrase comes to mind your restoring their dignity and your sanity. Some interesting movie was on. Pbs elizabeth is missing. Who’ve glenn heard about it so two things with that one. I thought they did an excellent job. Heartrending job of presenting the what the daughter. The caregiver was going through what her life was. An and breaking point as with anything when they portray someone with a dementia or alzheimer’s. I want to see a disclaimer in front before the movie starts saying everybody is different. This is one portrayal so they’re people who watch this movie. Don’t get the impression that everybody with dementia wears.
01:15:01 – 01:17:13
The same clothes goes around digging up other people’s gardens and you know so. Yeah we just need to focus on the individual. Not not what. we think. They should be doing well. This has been fantastic. And i love how you have the lightbulb moment of the pandemic and people’s needs and tying that into needs people that have dementia. Does this been enlightening. I’ve had a good chat today. So if you thank you for having me and for all of you out there when you do feel frustration whether it’s from the pandemic or you know you were on hold with the cable company for forty minutes and got caught off. Whatever your frustration is think to yourself. What would this feel. Like if i did not have the tools to deal with this. How would i feel so now. Great thank you so much. Thank you for having me jennifer. It’s always a pleasure. I hope you found that conversation as enlightening as i did. I am amazed that even though mom has been gone for over a year. I am still learning from my guests. And that gives me the confidence to know that you’re probably learning good things to be sure to check out my blog and her services and if you have any questions or you want to discuss the topic with me feel free to reach out to me via social media or email. I’m always around answer questions. And if i can’t find an answer i will find somebody. Who can you’re going to absolutely love next week show. It’s with an author by the name of alex winn stanley yup another guest from the uk and he wrote a beautiful book for children. My grandmother has dementia. You’re gonna love it. Watch social media for the pictures and as always. I’ll be in your ears again next tuesday.