How to Help Your Parents Cope with Aging

March 28, 2008

Anti-Aging Psychologist, Dr. Michael BrickeyJacqueline Marcell

  

  

  

  

  

  

  

  

Host: Anti-Aging Psychologist Dr. Michael Brickey

Expert Guest: Jacqueline Marcell

Broadcast: 3-25-08 on webtalkradio.net where the latest shows are broadcast and posted as podcasts

Jacqueline Marcell has learned a lot about caring for parents. She has a fascinating story with lots of lessons and tips. Her marvelous book, Elder Rage reads like Stuart Smalley on steroids. It explains how just when her life was falling apart, her parents’ problems exploded. Elder Rag–with its drama, wit, and humor is a great read. What especially interests me, however, is that in between the compelling stories, she shows how to solve a lot of problems. What’s more, the experience led her to become a passionate advocate for eldercare services, and reform of the often dysfunctional systems that are supposed to help our parents. In the first part of the show we’ll learn about Jacqueline’s experiences with the system and how her sheer determination got her through it. In the second part of the show we’ll focus on practical advice and how to get the best services. Her website is www.ElderRage.com

TRANSCRIPT ©Michael Brickey–excerpts permitted with attribution

MB: This is Dr. Michael Brickey with Ageless Lifestyles Radio, cutting-edge thinking for being youthful at every age. On each show I interview experts on what it takes to live longer, healthier, and happier. Our program takes a holistic approach in addressing anti-aging psychology, medicine, alternative medicine, fitness, nutrition, and wellness. Our emphasis is on innovative thinking and practices that have solid data and results. Life keeps asking us to learn new skills. We graduate from school and we learn to need resume-hunting and job hunting skills. Many of us become parents and learn everything from Lamaze to diapering to dealing with tantrums. Currently my wife and I are still trying to learn how to tell our seven-year-old identical twins apart and learning how to help our teenagers figure out which college to attend. Then comes the time to deal with aging parents’ problems. I experienced my share in the last several years with my father needing hospice services and my mother losing her short-term memory and eventually getting into a good assisted living facility. You hear about the sandwich generation. I guess, with caregiving for three generations, I’m a double-decker sandwich.After we get through these life lessons, we often say, “Boy, I wish I knew then what I know now.” The trick is learning from other people’s experiences early in the process. Joining me on this show is Jacqueline Marcell, who has learned a lot about caring for parents. She has a fascinating story with lots of lessons and tips. Her marvelous book, Elder Rage, reads like Stuart Smalley on steroids. It explains how, just when her life was falling apart, her parents’ problems exploded. Elder Rage, with its drama, wit, humor is a great read. What especially interests me, however, is that in between the compelling stories, she shows how to solve a lot of problems. What’s more, the experience led her to become a passionate advocate for eldercare services and help reform the often dysfunctional systems that are supposed to help our parents.

In the first part of the show, we’ll learn about Jacqueline’s experiences with the system and how her sheer determination got her through the challenges. In the second part of the show, we’ll focus on practical advice on how to get the best services. Jacqueline, could you paint a picture for us of what was happening in your life before your parents raged?

JM: I was a television executive and I’d had a whole string of bad things go wrong – personally, professionally, and then Mom needed care. She’d had a heart attack 11 years before and Dad had done a great job taking care of her, but he couldn’t do it any more and he wouldn’t give up. So I went to San Francisco to try to help the situation. I had been up there many times, of course, in the 11 years, trying to get him to accept help. I got up there, thought I would maybe be there for a month or so, and I was there for almost a year without a day off, getting him to accept help and getting my parents properly cared for and diagnosed and treated and just everything – the whole eldercare system was just not helping me appropriately. So like you say, if I only knew then what I know now, it wouldn’t have taken me all that time. I would know exactly what to do.

MB: So what was the first thing that didn’t go right?

JM: Well, I didn’t understand that my father – you know, he’d always had a bad temper; this was nothing new to me. It had never been at me before. So growing up, you know, he was 90% great, but boy, was that temper a doozy. And now it was at me, and screaming, yelling, throwing me out the house, calling me nasty names. And I’d cry, and you know, I just couldn’t believe he could possibly be so horrible. I didn’t understand that he was addicted and trapped in his own bad behaviors of a lifetime. But now they were getting distorted. He’d get upset over things that were – you know, just seemed illogical or irrational, at times, and then the next day he’d be normal. So I didn’t understand what dementia was. I didn’t understand it’s intermittent; it comes and goes in the beginning. I didn’t know how to get him to the right doctors who could uncover it early enough. And all that cost me a tremendous amount of time, energy, money, and heartache.

MB: What was your experience with doctors?

JM: Horrible! You know, I’m thinking, well, I have no medical background. You know, I’m relying on the doctors that have taken care of my parents for 20 years. And you know, I would describe all these horrific things that my father had done, and they’d look at me like, you know, “Well, we’ve never seen him be mean. We’ve never seen him rage. We’ve known him 20 years.” He was socially adjusted his whole life. My godfather read my book and he said, “You know, in 57 years, I never once saw this in your father.” And I have a cousin, a distant cousin who said, oh, I just made it all up, never seen my father like that. So my brother said, “Well, have them call me.” Because my brother was the one who got the brunt of it. It was the dirty little family secret, you know, that we didn’t share with anybody. My best friends, growing up, I didn’t share. You know, this was very hidden by the four of us in the family. And what a shame, because had we been growing up in this time right now, we would’ve known how to find help, how to get him in anger management, how to get him medicated properly, how to react to him instead of endorsing and ingraining that behavior, and walking on eggshells, hoping not to upset him. So when you do that, you know, your whole life, you’ve created your own monster in a way, and then you add a dash of dementia on top of it, the chances of you being able to turn that around when somebody’s in their 80s are pretty slim, but I did. And that’s when I finally was so infuriated about what I hadn’t known and what I hadn’t been told by these doctors and healthcare professionals that I was coming in contact with, was when I said, “Okay, I’m chucking my career, my whole 20-year career as a television executive. I’m going to go into eldercare because they need me.”

MB: You describe him as kind of an Archie Bunker and your mother as kind of an Edith Bunker. And he knew how to put on a good show when he went to the doctors’ offices or when he was in front of professionals. Is that common?

JM: I didn’t know how common it was until my book. Elder Rage has been out there now long enough and I get emails every single day – several – that will say, “Oh, my gosh! I thought I was the only person with a father like yours,” or “My mother – you know, we must be related, my mother is just like your father,” or “My husband is just like…” or whatever, and describing that how amazingly sharp they can be when they go to the doctor. Well, if you’re going to a doctor that doesn’t understand how to get to the very early signs of this – I mean, anybody can diagnose it in stage two when a person is wandering or starting to – has a car accident or leaves the stove on and almost burns the house down, or has such drastic behaviors that you get it. You know that it’s what we used to call untreatable senility. Or you know, you know, “Dad, I just told you that four times in the last ten minutes,” and you’re starting to think, “Okay, maybe he’s got some type of dementia.” Alzheimer’s is just one type of dementia – I didn’t even know that, and most people don’t until they get into it. But the mission that I’m on is to get people to understand it earlier, way before that happens, because you don’t go from normal to not knowing that you’ve asked the same question four times in ten minutes, that you’ve got a short-term memory problem like that or that you don’t remember where you live, after 37 years of living on that street. That’s way far into the disease. So we need to catch it very early. And unless you get to professionals who are trained in uncovering that – and it’s more than “What day is it? What time is it? Who’s the governor?” and the mini mental state exam. It’s a complex diagnosis and a complex evaluation. And those professionals are few and far between. So that was my mistake – relying on professionals that didn’t have any training in that. And then I didn’t find out until much later that Dad had told all the professionals he came in contact with, whenever I wasn’t there, not to listen to anything I said because all I wanted was his money – like, I wish he had some! So it just was unbelievable. I just could not believe. And I’m not shy. I have taught at the college level. I’m a pretty educated person. I’m in a major metropolitan area, San Francisco Bay area, and I am begging, screaming, you know, looking, searching for answers, and was not directed properly for a whole year. So that’s when I realized, if that happened to me, this has got to be happening on such a scale around this country with people that may not be as aggressive, may just be taking whatever the doctors say, may not have the education to try to figure things out. And it was tough, tough for me! And maybe in locations that have even fewer and farther between resources to turn to. That’s when I said, “Okay, this needs my help.”

MB: Knowing what you know now, how does a lay person find whether a doctor is knowledgeable, and how do you find the good doctors?

JM: That is really a key factor, isn’t it? And that’s why everything I do, I spread the ten early warning signs of Alzheimer’s disease. They’re in my book. They’re on my website at ElderRage.com. I want these on billboards, I want them on sides of buses, I want them on public service announcements, so that the general public and healthcare professionals are so aware of these warning signs and that it’s common knowledge of what they are, that when the daughter takes the mother to the doctor and says, “I have kept a little diary here of all the ten warning signs that I’ve been noticing my mother doing, and I have specific examples of this one, and then it was a month later she did this, and a month later that. And so, Dr. Smith, I’m really going to need a referral to the best neurologist in the county or that we can find, that you know of, that is a specialist in dementia.” So that – you know, that’s a very specialized thing. So isn’t it interesting now, I – with no degree in medicine except my DLE, my doctor of life experience – I’m educating doctors all over the country for their CMEs, for their Continuing Medical units.

MB: Wonderful.

JM: And I’ve educated – I can’t even tell you how many doctors I’ve educated. But oh, hundreds and hundreds of nurses, social workers, case managers, for their CEUs. But when I can get a doctor educated for a CME, I am thrilled because then I know – I’m teaching them in a very kind way that they just don’t know enough, and getting them the resources of how to help that family take notes, keep track of the warning signs, and then not just say, “Well, honey, your Mom’s getting old.” You know, that’s what people tell me all the time; that’s what they hear from many of these doctors.

MB: So it’s a two-pronged approach that you’re both educating the professionals but you’re also getting the lay people to really know what to ask for, what to look for, and taking the data into the doctor.

JM: Exactly. They have to. Otherwise, you know, most people put – you know, the doctor should know! You know, what the doctor says. But if you’re attuned enough to say, “Hmm, this is a GP. May not have been trained in dementia.” But I know these warning signs and I’m seeing them in my mother. And she’s still independent – she can still drive and she can still be at home and take care of herself. But gosh, yesterday she couldn’t find her keys – which we all have that happen – but all the sudden I open the freezer and there’s her keys there in the freezer. And I said, “Mom, why did you put your keys in here?” “Well, I didn’t put them there.” “Well, there’s been nobody here but us. We drove here together in your car. You can’t find your keys. I just found them here.” “Well, I didn’t put them there.” So you know, if you know that that was a warning sign, putting things in odd places, you’d have a light bulb go off in your head, instead of just thinking, “Oh boy, did I put these in here?” You’d start to think, “Well, gee, okay, this could be the beginning of some type of dementia, possibly Alzheimer’s, and I need to make a note of this, write it down, and see what else I notice.” Maybe this was fluke. You know, maybe she was putting something else in there. She had the keys in her hand and she was putting the groceries away and they just happened to fall, and she wasn’t specifically doing that. So you have to keep track of these for awhile. It’s that short-term memory, when they ask you the same question in a short period of time, or tell you a story and then ten minutes later start telling you the same story. It’s not when they tell you something one day and then three days later they tell you again, and you’re going, “Mom, you told me that!” and it was three days ago. Well, we tell people this, we tell people that – “Did I tell you this already?” We all do that; that’s normal aging. But it’s more like if you just told me that. That’s the short-term memory isn’t working right. So that’s a key one to watch for. Some of the other ones are the personality gets shifted a bit, you know, where just all the sudden there can be – they just burst into tears over something. Or like Dad – he’d just fly into a rage. Now, he always flew into a rage, but now it was over because he didn’t have strawberry jam instead of his raspberry jam, you know what I mean? I mean, weird things where you’d go, “Jiminys, all right.” And if you chalk it up to old age, you chalk it up to stress – you know, he’d been taking care of Mom for such a long time, couldn’t do it anymore. She almost died from his inability to care for her. And that’s why I had to persevere. This wasn’t something I wanted to do. It was a necessity, because I couldn’t leave Mom alone with him. There was no way. She would’ve died from his inability to care for her any longer. I mean, when I got there she was – oh, it makes me just shudder right now. She was in the hospital, was there for three months from him not taking her to the hospital. She was 82 pounds when I got there from a urinary tract infection, and he didn’t think maybe that was important enough to take her to the hospital. So I couldn’t leave her. I was in this Catch-22. I call it the Caregiver Catch-22. I was trapped there. Couldn’t leave her alone with him. Couldn’t get the doctors to believe me because it was so intermittent, it was so coming and going. It was the very beginning of it. He was darling when he needed to be. I was not taking him to the right doctors who could uncover it early enough. I couldn’t get a caregiver to stay because he’d throw them out of the house within a day or two or call them nasty names. I couldn’t put them in a nursing home – she required full nursing care, he didn’t. He would just take her out. I couldn’t put him in a home; he didn’t qualify yet. I couldn’t – I was like just completely trapped. And that’s when I said, “Okay, well, I’m not my father’s daughter for nothing. You think he’s stubborn. Okay, I am going to figure this out, come hell or high water.” And I persevered until I did. And once I did, that’s when my whole life took a left turn and I made the decision to do something important.

MB: So we have short-term memory. We have behavior changes. We have just not taking care of things. What are some of the other signs?

JM: Oh, let’s see. Disorientation to time and place – you know, like one day driving with Mom and Dad and we’re at the main drag where they lived for decades and I’m in the left turn lane to go see Aunt Dora. And all the sudden he’s screaming at me to turn right. And I’m like, “Dad, what are you talking about. You know she lives over here.” And he goes, “She lives over here! She lives over here!” And I’m thinking, “What? What is wrong with him?” And then all the sudden he just looks blank. And he goes, “Honey, nothing looks familiar.” And I’m like, “That is so weird!” You know, and I cried, and I’d think, “Oh, he’s getting older now.” If I knew that that was a warning sign, we would’ve gone down to Aunt Dora’s and I would’ve made a phone call to the Alzheimer’s Association. I would’ve known to call the area agency on aging or I would’ve known to call the Alzheimer’s Foundation. I would’ve known where to find the resources and I would’ve known how to locate a neurologist specialized in dementia, to get him in there and evaluated early. People say, “Well why do you want to know? Who wants to know if you’ve got Alzheimer’s?” Well, you do. Because if you do, medical science in the last 15 years – we’re blessed to have four band-aids, I call them. You know, they’re medications. They’re band-aids; they’re not a cure, they’re not going to stop the disease, but in most people they can slow down the progression of the disease. Now that’s huge! You get the diagnosis early and you can slow the progression of the disease down, and then you can make sure that your loved one is being treated with an antidepressant, because most people with any type of dementia are greatly helped with that. And the of course, holistically – eating right and exercising and putting all the effort into getting the person to be as healthy as possible in every way, shape, and form that they can be; and socially – getting them involved in senior centers and adult day centers so that they’re active and busy and so they’re not just spending their days in bed or in front of the TV because they get so depressed. But managing it – the depression is one of the warning signs of dementia, so is it depression alone or dementia or a combination? So you’ve got to get the right doctors, so you’ve got to be attuned to this. Then, okay, let’s say you can delay it for a year from progressing to the point where they need 24/7 care – they’re still independent, they’re still able to do a lot of stuff – that’s huge, huge! Because medical science is working so feverishly trying to come up with a cure or trying to come up with a medication that will stop it in its tracks, or maybe even delay it for two or three or five years. Most people don’t. Most people chalk all these symptoms up to old age – “Well, you know, she’s always had a bad memory,” “Oh, she’s always been difficult,” “Oh, she’s always gotten lost” – whatever. It’s the more-so theory of aging – whatever you were as a young person, you get more so that way as you get older. But now these symptoms start to distort that intermittently, where the – it’s so subtle in the beginning that the family doesn’t catch it. So it progresses. Now it progresses to a crisis, and if you haven’t reached out when it was early, now you’re in the crisis where you’ve got to have 24/7 care. You cannot leave them alone, period.

MB: Big-time safety issues, yeah.

JM: Now, even if you get the diagnosis, even if you get the medication, even if you’re doing everything holistically possible health-wise, you can’t go backwards. You can’t go back to the relative independence that you had in the early stage. And see, the early beginnings of this can last – there’s a stage called MCI, mild cognitive impairment, and that can last five or ten years. So it’s really subtle when this thing starts. It takes a long time to get going. Okay, so you’re in MCI for five to ten years. Well, a large percentage of those people will go to Stage 1. Not everybody – they’re still doing tests to see how many people – but nobody goes to the doctor for MCI. You know, it’s like – uh, you know. But they think it’s between 70 and 90% right now, is what the statistics are showing. So a large percentage of those people are going to go to Stage 1. Stage 1 can last two to four years. Everybody ignores that, too, because, well, they’re not that bad. But then you got to that point where there’s been a car accident or they’ve wandered downtown and ended up in the next county over, completely lost – whatever’s happened. Now the family’s screaming for help and they’re saying, “I can’t take it anymore.” You know, it’s been building, building, building, building, and now we’re at the point where, okay, now we’ve got to do something about Dad. Well, now it’s too late. Now you’ve got to take time off work. Now you’ve got to try to find or hire caregivers. Now you’re doing everything you can to elder-proof the house and keep them safe at home and try to get people to care for them 24/7. And this is why Alzheimer’s Disease is costing this country $61 billion dollars a year. 79% of that is the lost productivity from the absenteeism of adult children and spouses having to take time off work to care for their loved ones, because they didn’t wake up in MCI or Stage 1 and do anything about it. So if we could all wake up, if I can get everybody to wake up early, think what we can save families in terms of heartache, but think what we can save our society in terms of all these elders that are progressing into the Stage 2 where they need full-time care sooner than they should have if they’d gotten evaluated earlier. Now let me tell you, Stage 2 lasts two to ten years. Some people move through very quick, other people – ten years of that. Then they go to Stage 3, which is the end, and that is nursing home time. And that’s one to three years of pure hell. I’m trying to just wipe Stage 3 and most of Stage 2 off the map, so if we can catch it early enough, then we delay, we delay, we delay, they die from something else, because one out of eight persons by the age of 65 will get this – one out of eight by 65, and one out of two by 85. So that’s why it’s so imperative for this early, early understanding of this.

MB: What have you learned about how to coordinate the efforts with your siblings?

JM: Well, you know, like I told you, my Dad was really awful to my brother growing up. My brother was eight, nine years older, and I didn’t get that upbringing. You know, my Dad was orphaned when he was ten. He had a fourth-grade education. He lost his mother, his father, his siblings all got battered around, he’s in an orphanage. So there was a lot of rage in that little boy that wasn’t dealt with. Now he marries my mother and boom, there’s a baby right away. So he had tremendous jealousy. He wasn’t evolved enough himself as a man – he was still a little boy and my mother was his anchor. And I think there was just a lot of jealousy of that child. And my brother got the brunt of it, unfortunately. And then eight, nine years later I come along, and I’m a girl – for some reason I don’t get that. I don’t get that same jealousy thing. But I saw my brother deal with it, and it ruined his life, actually. So when my mother had that heart attack – they had an on and off relationship their whole lives. You know, we’re well into adulthood and middle age now and it’s still on, off, on, off. And they never, ever did get along. Well, they had a blowout, Mom had the heart attack, and they never spoke again for eleven years. And I kept trying to get them back together – wouldn’t work. So my brother wiped his hands of all of us, including me. So when I got up there to have to try to solve this and I’m there for a year, there was no help coming from my brother. And it was really hard. You know, this was his mother also. I was sitting in the hospital for three months, feeding her every bite of those meals and, you know, being there until midnight – I’d send Dad home before it got dark – you know, thinking, “Well, he could be here feeding his mother. This is his mother, too.” But I had to walk a mile in his moccasins, you know. I had to realize what my father had put him through and that he did not get the love that I had gotten growing up, and I had to let it go. And so I made amends with him and as soon as my mother was out of the hospital, I got my mother to see her only son. She hadn’t been able to see him – my father wouldn’t allow it – for eleven years. And I mended that fence without any expectations of help from him whatsoever. If I were to do it again, what I would do – and what I tell families, if you’ve got a sibling that doesn’t want to help with the caregiving or they’ve had a much different experience than you had growing up, like I did, you know, people would say to me, “Honey, so sorry about what you’re going through with your Mom and Dad. Is there anything I can do?” And I’d be like – I didn’t know what to say, you know. What I tell people now is make a list of all the things that you need to do, as a caregiver and otherwise, because some people will be happy to come in and sit with you Mom while you go to the market or you do this or that. Other people don’t want to do that part of it. Some people will be happy to bake some cookies for the freezer, though – something that they could do to help. So make a list of all those things. “Gee, you know, my watch needs a battery. I haven’t had a chance to get a battery for my watch. Could you do that for me?” “Sure, I could do that for you.” Now, if I’d asked my brother, “Gee, the car – I haven’t had a chance to get it serviced. It’s way overdue. The tires need rotating.” You know, something where he didn’t have to be involved with Mom and Dad while they were at adult daycare all day and he didn’t have to see them and he didn’t have to be involved in it – I could’ve made a list of things that he might’ve been able to help me with and just said, you know, “Here’s a list of things. If you feel like it, pick one. You know, if you don’t, it’s okay, too. I’m just making up this list and giving it to anybody.” And you know, I’d have at the bottom of the list, “Take me to lunch.”

MB: I love it. It’s such a simple solution, but most people wouldn’t think of it.

JM: Yeah. You know, “That lamp that Dad threw at the caregiver last week is broke. Can you get that fixed?” You know, “He pulled on the curtain rod and that’s all bent and broke.” When you’re a caregiver – you don’t have time for all those things that consume our lives anyway – and then you add caregiving on top of it. Everything else goes by the wayside – until you get your loved on into adult daycare, which I cannot say enough about. I’m a huge advocate for that. And I was a year into it, you know, because I’d have people say, “Well, why don’t you get your parents into that?” I was like, “What is that? A nursing home? I can’t get my father in the shower. How do you recommend I get him to go THERE?” And so, you know, he was a sundowner. He was up all night, she was up all day, meaning I was up the whole time. I couldn’t turn him around. I mean, I am slamming doors, I’m vacuuming next to him – he is out like a light during the day. It’s called sundowning. It’s very common with elderly people, particularly those with dementia. The only way that I was able to finally turn that around was when I got the right doctors, we got the medication to slow down the progression of the disease, we got the antidepressants in both, I was able to optimize nutrition and fluid intake – and then get them into adult daycare all day so that they were busy. You know, they had their crafts and their cooking class and their movies and their field trips and singing. They had all kinds of activities all day – and nutrition and physical exercise. And it was perfect for them and it gave me a little break. And then they’d come home from that and they’d be exhausted and they’d sleep through the night. So it was perfect! And you know, if I’d only known to do that sooner, that it would’ve turned around the sundowning. And I’m for seven-day-a-week daycare because, boy, he’d hit that bed on Friday afternoon after daycare and I could not get him up. Friday night, Saturday, Saturday night, Sunday, Sunday night – Monday morning, he did not want to get out of that bed because he’s been into everything the entire weekend, getting up and just eating. That’s all I could get him to do. So I’m for seven-day-a-week daycare. I’m really an advocate. I’m such an advocate for NADSA, which the National Adult Day Services Association, NADSA.org. They gave me their media award because everything I do I mention the value of adult daycare because nobody knows about it. And you know, it’s not a money-making venture. I mean, you know, for $50, to have your loved one go – I mean, how do they make money at that rate. We’ll go into that, and they have hearts of gold, that do that work.

MB: What have you learned about how to recruit and manage caregivers?

JM: Well, I tried everything. I did everything wrong. Everything I did wrong – you can read the things I did wrong, and then how to do it right is in my book, in Elder Rage. But you know, I didn’t know how to hire caregivers. I was calling agencies, you know, and they – “Oh, we’ve dealt with very difficult elders. We know how to manage them.” And, well, good caregivers are in such demand that if you’ve got a very difficult elder like Dad who would call them nasty names and scream and yell if they didn’t do something just perfectly right, and throw things at them – you do not need to be abused, there’s too many other jobs where people would love to have you come and take care of them. So I couldn’t get a professional caregiver. Plus, it was like 20 bucks an hour.

MB: Wow.

JM: You know, it was very expensive. And how am I going to do that? So I started to try to hire – the good thing about going through an agency, though, is that they do – if you check this – background checks. And you’ve got to make sure, okay – “Oh, yes, we did background checks.” “Oh, how far back did you check?” Do they check one year back, three years, ten years, lifetime? Do they check the county, the state, nationally? Criminal – you know, felonies as well as misdemeanors? What do they check? So don’t just be fooled by “Oh, we do background checks.” You want to know what background checks they do. But that’s the good thing about hiring an agency is that they’ll usually do that for you. Plus, the other good thing is, if your caregiver has a problem with their family or their loved one or their car breaks down or whatever, you can call and they’ll have a person there who can fill in and they’re supervised, you know, and they’re bonded – most places will be bonded. Well, all that costs money. That’s why you pay quite a bit of money for that. Well, I had two people needing 24/7 care and the cost was just prohibitive. So I tried to hire caregivers, you know, putting ads in the paper or calling other people, saying, “Do you know anybody?” “Oh, we had one for my Uncle Joe and he’s passed now and she’s great,” and then trying to find her in between, and then of course, trying to find one that lives close enough to where you’re loved one lives. And then I was fingerprinting my own caregivers and taking their picture and being my own little FBI agent. And then, you know, you’ve got to lock up all the valuables. I don’t care how reliable people are, just don’t put temptation in anybody’s path. And even with all of that, I had people steal from us, people on drugs. I had everything go wrong that could go wrong. Until I finally met this gal who came to the interview – the amazing Arianna – and I was at the end of my rope. And you’ll have to read about this gal, with no experience and one year of high school, this gal was the angel I had asked for. And she, with my help, was able to help me turn Mom and Dad’s lives around and get everything accomplished. She and her Mom stayed, taking care of Mom and Dad. I was just so lucky to find her.

MB: If you had to find an Arianna now, how would you go about looking?

JM: Well, I’d know the questions to ask. I’d know to call all the references. And I’d know to go to their home unexpected-

MB: Oh, I like that.

JM: Because that’s the level of neatness and cleanliness I would expect to find in my parents’ home. You know, there’s certain questions you can ask and certain questions you can’t ask, I guess, when you’re hiring people. But you can, you know, kind of go through those. You can get a legal form kind of thing. But I think experience – and I just happened to luck out – she had no experience, but I was just at the end of my rope after about a year of this and I was just, “Fine, whatever, come on in.” But now, I – what a risk I took, you know? But it took me a long time to get her trained. It’s the references. It’s really talking to people – they know this person, they’ve worked – and get five or ten. I mean, really get a lot of references before you allow somebody to be in your home. And realize, you know, these people are not college-educated people, by and large. They’re oftentimes people from other countries, oftentimes people with very limited education, and you care asking them to do a tremendous number of things. You’re asking them to feed, to cook, to prepare – you know, I had them administering pills, because if you have a professional, they’re going to come in and preload a Mediset with a nurse, you know. So here I’m trying to teach her how to do everything – she was like an extension of me, of everything that I was trying to – and I’m, you know, a highly educated person and it was hard for me to do. You’ve got to allow for a learning curve for your caregiver and give them ten attagirls or attaboys for every mistake that they make and try to guide them and teach them how. And reward them – you know, every time – it finally started to hit. First money I got, boy, was big bonuses for amazing Arianna and her Mom. I gave them everything. These people deserve everything.

MB: And I love your idea of going unexpectedly to their home. You just learn so much just by seeing what it’s like.

JM: By observing, yeah. “Oh, I was in the neighborhood and I wanted to stop and give you this.” And you’re going to get an eyeful. You know, you might think twice if you’re a person that likes things neat and organized or clean or – because that’s the level you’re going to expect in the home they’re going to be coming and caring for.

MB: And you could even do that with the pretext, “I have another form I needed you to fill out” or something like that.

JM: Yes.

MB: You’re listening to Ageless Lifestyles Radio on http://www.Webtalkradio.net.  We’re talking with eldercare advocate and reformer, Jacqueline Marcell. She is the author of Elder Rage, which has been endorsed by an awesome who’s who list of celebrities and healthcare experts and political leaders. Her website is http://www.elderrage.com/. There’s information about her books, her seminars, her blog, and lots of practical advice and resources for helping elders. Anything you want to add to that, Jacqueline?

JM: Oh, I just want to add, take care of you. If you’re a caregiver, make sure you put you first, because, you know, I didn’t. I was so trapped and I got breast cancer. And who do you think called me more than anyone? My brother. So don’t alienate that sibling that’s not able or willing to help with your parents. That’s your family. And you never know. You may need that relationship later. My brother and I have a wonderful relationship now.

MB: Do you think possibly the stress of all the family issues and the job changes and everything contributed to getting breast cancer?

JM: Yes. I think that we are hit with carcinogens all the time, in our air, in our water, in our food. And then you either have an immune system that fights it off or you don’t. And I was under the most incredible stress of my life. And you know, I’ve run some companies so I’ve been under some stress, but this was a stress that was like no other – I cried every day for a year. It was so intense that I was catching every cold, every – you know, I was just – my immune system just went. And that’s when, I believe, the cancer was able to start.

MB: And you’re in full remission and doing well?

JM: I’m in remission, yes. I get tested every three months and so far so good, knock on wood. But what I learned the hard way in both cases is the importance of putting ourselves first. People think it’s selfish or egotistical. But you know, you’re all you have. You know, this is – what you have is you. And in order to be effective and loving partner or for any of your friends or family, you want to put yourself first, because it’s too much for them to – having to try to take care of you also. Everybody’s got their own things, so if we all took better care of ourselves. You also use, you know, the positive imagery – I teach affirmations, I teach gratitude at my seminars, I teach the power of positive thinking and just humor, the power of humor. Boy, the first thing I did when I got diagnosed with breast cancer was I got Netflix and I rented every comedy that I had never seen or the ones that I wanted to see again, because I didn’t want horror movies or anything that would – you know, I wanted to flood my system with endorphins. I wanted to flood it with laughter. And I’ll tell you, they made no money on me – I watched three movies a day, sent them back, got three more. I had a lot of complications. I’ve had six surgeries, six months of chemo, six months of radiation, had a lot of complications – blood transfusion, the whole bit. And I’ll tell you. Positive thinking and keeping going – I didn’t miss one speaking engagement. It wasn’t heroic; it gave me a reason to get out of bed, and gave me something to look forward to, to go do, because I’m so passionate about my work. I couldn’t even imagine if I didn’t have my work to do while I’m going through all of that. But I incorporated a lot of humor into my life wherever I could. And then I made myself little flash cards, my gratitude list that I read over every day – I still read over every day – and just focusing my mind on anything positive and all the positives in my life. Because, you know, when you first start to make that list, you can’t think of one darned thing. And then you put down, “Okay, I’m still breathing. All right, let’s see, what else?” And then, you know, you start to think of more and more and more things, and then if you focus your mind on those, you can’t have a positive and a negative thought at the same time, so who doesn’t want to just have the positive? So I made some flash cards. I put little signs all over the place. I practiced my Stuart Smalley in the mirror – “You’re a wonderful person.” I wake up every morning and kiss my arm [kissing sounds] – “You’re still here, you’re fabulous.” And you know, it helps. It really helps.

MB: One of the things that I really admired in the book was the way that, when things went wrong, you really went in very assertively and got people to make them right. For example, the toilet story in the nursing home.

JM: Oh my gosh, yes. Well, you know, as we know, I take after my father. I told amazing Arianna, “When I get to that age, if I’m like my father, please throw my book at me!” Because, see, by then, we’ll know. We’ll have this wired, so I’m not worried. But the good news is I’m very strong. And when I see an injustice, I’m going to make it right. You know, Mom was in a room when she came out of the hospital – this was my first – you know, after the three months of nursing her back to health and she gets transferred across the street to the sub-acute unit of a nursing home. You know, and every day – Dad’s there during the day, I come late afternoon, I’m there until late at night. And we’re both feeding her every bite. And there’s this lady in the room – they put a lady in the same room with her, you know, with the curtain and the whole thing, and she had this terrible skin condition – I mean, just terrible, all over her body, and she was a very large woman. And nobody ever came to visit her. My Dad said nobody was there all day, and then nobody would be there all night. So I felt bad for her so I was always trying to help her. And you know, I had got a TV for Mom’s room so I made sure that this lady could see it too and every, and I was trying to chat with her a little bit. And then I noticed a little tiny sign outside of our room that said, “Contagious.”

MB: Uh-oh.

JM: And I said, “What!?” And so I pressed the night nurse, when I was there, and I said, “What are – Mom’s not contagious. This person is contagious?” “Yes, she is.” I said, “Well, what the __ is she doing next to my mother? And I have been helping her and nobody told me she was contagious.” So I raised holy heck, as you can imagine. I got in there the next morning. I said, “You’d better tell they’d better have a – I’ll be here the first thing in the morning to meet with the administrators.” And oh, my gosh! You know, “Well, you know.” And I said, “Wait a minute. She’s using the same toilet that my mother’s using. I don’t see it scoured with Clorox every time.” “Well, well, you know, her skin disease is just on her back.” I said, “My mother sits there and leans back all the time with her gown open. What are you telling me?” “Oh, blah-blah-blah.” By the time I got back, the lady had been moved to a private room. We kept a private room. A sign was outside ours that said “Private.” You know, I was like, well, what happens to people that don’t have an assertive daughter like me? What would’ve happened to Mom? Dad couldn’t read that sign with his eyes – he wouldn’t have seen that, he wouldn’t have known what to do. So just think of the horrors that must happen where I raised holy heck about it. What you do in that case is you call the area agency on aging and you talk to the ombudsman. And that’s the person who’s your advocate as a family to tell you what’s going on with nursing homes – how many liens, how complaints, have they had any lawsuits, have they had anybody die suspiciously, what’s the statistics about that place that your loved one’s been put in? You know, she was just transferred there across the street. I had no say of where she was going. It was, “Well, she’s going across the street.” I’m like, you know, I didn’t even know I had an opinion on these things. But now, I’d make sure that that place was fined and cited and everything else. What you don’t know can cost you a lot.

MB: The moral is that even when you have professionals taking care of a parent, you still have to inspect what they’re doing and there often are problems, and when there are-

JM: Yeah, and we only hear about the bad nursing homes. You know, there’s a lot of – God bless anybody that does that work. You know, it has got to be very, very difficult to work in a nursing home. I give – anybody that does, my hat is off to them. And we have so few people going into nursing. We have such a shortage of nurses, you know, all the way around, let alone nurses that want to work in that environment. So, you know, you’ve got to be proactive. And you know, I dropped in at 3:00 in the morning one night. I just had a – I don’t know, I didn’t feel right, and I just got up and got dressed and drove there at 3:00 in the morning. And you know, the guy sitting there was asleep and the buzzers were going off and people were calling for help, and there’s nothing worse than hearing elderly people calling for help and nobody going. Oh! It just makes me cry right now thinking about it. And nobody going to see if they’re okay. And I raised you know what. I got in there, and thank goodness my asleep because if she had been awake and begging for help or had fallen or something, I can’t even imagine what I would’ve done. So – oh, you got me choked up here! They’re overworked, they don’t have enough workers, there’s too many patients. You see, my whole bottom line point of what I said earlier, if everybody knew those ten warning signs, if they woke up early, if the professionals were attuned and the families questioned it, they got the right diagnosis early enough, we delay the disease, people wouldn’t be having to go into nursing homes as much, and a lot of these horrors would be eliminated. I was just shocked a couple of years ago, AARP had an article out about nursing homes – they said that 90% are understaffed. Well, that’s heartbreaking. So you’ve got to be an advocate for your loved one if they’re in a nursing home – or anywhere, you know. Adult daycare – you have to be following up on what’s happening there. If they’re in assisted living, making sure that the activities that you were sold on that were going to be done are happening. You know, what are the meals like? You’ve got to make sure you have a meal yourself at these places. And try a place out first. You know, put your loved one there for rested, you know, instead of signing that they’re going to live there.

MB: Oh, that’s a good strategy.

JM: You know, find out a place that – “We’d just like to try it for the weekend while my husband and I go out of town. We’d just like to have Mom be taken care of for the weekend.” And see how it goes before you commit. That’s a very good thing to always do.

MB: And if something goes wrong, then you said the ombudsman, of course the administrator, and the state licensing agency.

JM: Yeah.

MB: And there’s always wonderful data at Medicare.gov.

JM: Yes.

MB: You can go right in and specify a mile radius around where you want, and incredible detail about the nursing homes in the area.

JM: Yes! You know, I have all these links on my website at ElderRage.com. Just scroll down on the left side at the bottom; it’ll say “Eldercare links.” And I have gathered every valuable link that I can find. And you’re just going to find tons and tons of how to find nursing home reports, how to evaluate, how to find – just everything related to eldercare I’ve put on my website. And it’s all free. Just trying to spread good information to people.

MB: Well, I want to be sure to get one more tip from you. How did you handle taking away the driving license?

JM: Oh, my gosh! You got about an hour? Dad was horrible. We couldn’t find the car keys and he had taped them to his leg.

MB: Oh, my goodness.

JM: You know, we’re patting him down, we can’t find the car keys. He had taped them to…! I’m here to tell you, dementia doesn’t mean stupid. Oh! Now, see, with the knowledge I have now, what I would do if I knew that he should not be driving – I mean, Dad, you know, he couldn’t see the big E, number one. His sense of direction, his reflexes were bad, his hearing was bad, he couldn’t wear his – he wouldn’t wear his hearing aid. Just, you know, and the beginning of the dementia had started, which I did not – but he just should not – I knew somebody was going to die if I didn’t take the car away. So he hated me, just hated me – horrible! Well, now, see, what I would do is I would call the Department of Motor Vehicles and I’d ask for the supervisor, I’d make friends with that person, and I’d say, “Somebody’s going to die unless you help me. So what I need you to do is be the bad guy so I don’t have to take the brunt of it. I can just be the good daughter.” And then I would tell Dad, “Oh, the Department of Motor Vehicles called today while you were at daycare or while you were in the shower or wherever, and I’ve got to take you down there tomorrow or this afternoon or whatever,” and he would scream and – I can just hear the swear words, like a sailor, it would be like a blue streak, but it would be at them, not at me. And then I’d have the appointment all set up, I’d take him down there, and they’d do the eye test and they’d do – you know, if he somehow passed that, then they’d give him the written exam, and somehow passed that and cleared the parking lot for a driving test – it wouldn’t even take more than the big E that he couldn’t see – but you know, then THEY would take the license away, and then I could be the devoted daughter that says, “Oh, shoot, I’m so sorry this has happened. You know I don’t want you to feel trapped at home. I want to sign you up for…” – in most areas they have transportation for seniors, you know, shuttles that’ll take people for a very – free if you’re a certain age or a very nominal fee. And I would get one of those big button phones, you know, and I would preprogram it so – maybe even a picture phone, so it would have a picture of a taxi or a picture of the shuttle or the neighbor, a picture of the neighbor, and I’d have it one-touch dialing so that he could always reach somebody if he needed to go somewhere. Now this was of course before we got into where he needed 24/7 care. This was early on when I was there. That’s what I would do now. And get the club and put it on the steering wheel, because I don’t care how many times you tell somebody that they shouldn’t drive. He would agree – the doctors would tell him, and he’d say, “Okay, I won’t drive.” And then he’d forget and he’d think he was just fine, and then he’d go out there and start the car, and boy! So at least get the club on the steering wheel or, you know, I don’t know, you’ve got a kill switch in a locked glove compartment. And “I don’t know. The car won’t start. I guess we’ll have to have it towed.” So you might have it towed somewhere, out of site, out of mind. And, “Oh, they just can’t find that part from Japan.” Do whatever. Put a notch in their keys so the keys don’t work. If you’ve got an older car with a distribution cap, take the distribution cap – you know, there’s a million things you can do. But just make sure they do not drive. And most people don’t, because they don’t want to be the chauffeur, they don’t want to be trapped having to go get every little thing that the person needs. But I can’t tell you the lawsuits that people get themselves into when they don’t take those car keys away soon enough. They wait until there’s a crisis, and the crisis is often somebody getting killed.

MB: Jacqueline, thank you so much for sharing. I simply love your book.

JM: Thank you.

MB: Your website, ElderRage.com, has just fabulous information on it. And I’m so happy that you’re doing the advocacy and the reform work that you’re doing. It’s a real blessing for all of us.

JM: I’m doing my darnedest. And I’m still so passionate about it! You know, I said, isn’t it funny how sometimes when life takes you to your knees, it may be the same experiences that take you to your highest purpose, your highest passion, and your highest work.

MB: Well said.

MB: Each show I like to share a baby step to help people live longer, healthier, and happier. When my son was about ten years old, he became very ill. He became so weak he could barely talk, he could barely stand up, and we took him to Children’s Hospital. They poked and probed for about an hour and a half and shrugged their shoulders and say, “We don’t know what’s wrong,” and sent him home. My wife called her mother, who had been an art history major, and described the problem, and she said, “You know, David visited me in Philadelphia about a month ago, and there’s a lot of Lyme Disease in our area. Sounds a lot like Lyme Disease.” So we got on the internet, checked the symptoms – they matched very well. Took him back to Children’s Hospital. We told the doctors, “David has Lyme Disease. Please start the treatment right away.” They did and it cleared up within about 24 hours. Without that persistence, without getting the information, David would probably have very serious disabilities today and for the rest of his life. The baby step is that the information for just about anything that we need or the answer for about anything that we need is out there, if we keep looking, if we’re persistent, if we’re determined to find it. And this fits very well with what Jacqueline described, of how, when things don’t make sense in taking care of parents or any area of life, we need to keep asking, to keep probing, to keep being persistent until we get the information we need, the answers we need.

This is Dr. Michael Brickey with Ageless Lifestyles Radio on http://www.webtalkradio.net/.  I’d love to get your feedback and comments. Just sent them to radio@drbrickey.com. Information on anti-aging psychology and the Defy Aging Newsletter, which is free, is at DrBrickey.com. Thank you for listening on our quest to live longer, healthier, happier lives.

 

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One Response to “How to Help Your Parents Cope with Aging”

  1. […] drbrickey released a breaking post on How to Help Your Parents Cope with Aging. See below for a quick excerpt: […]

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