273: Practical Advice for Adult Children of Aging Parents with Linda Fodrini-Johnson
Today, I’m talking to Linda Fodrini-Johnson. Linda has been a Geriatric Care Manager and Aging Life Care Expert for nearly 40 years. As a licensed marriage and family therapist and certified care manager, Linda works to help families avoid potholes and misinformation and find peace in the course of family caregiving.
In her book, The Empowered Caregiver, she provides adult children of aging parents with ideas, lists, scripts for touchy conversations, critical questions for doctors and lawyers, and other resources collected over the course of her career.
In our conversation, Linda and I discuss how her own struggles with aging parents and caregiving transformed her life and career, how to destress your life as your parents get older, and her valuable insights on how to deal with a parent that is suffering from Alzheimer’s or dementia.
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In this podcast interview, you’ll learn:
- Why almost everyone needs further education when it comes to aging.
- How caregiving will continue to evolve into the future, why we will need more care, and why we all need social lives to age healthily.
- Why there’s no one-size-fits-all solution for eldercare.
- What it means to be an empowered caregiver.
- How to recognize cognitive impairment, how to talk about it with a loved one, and how to get help when you need it.
- "Healthy aging is what we all need." - Linda Fodrini-Johnson
- "I don’t want it to be my decision. If I have to make a decision for you, it’s your values and your goals of what you want." - Linda Fodrini-Johnson
DisclosureOffer valid in the 50 United States and the District of Columbia, to first-time requestors. During the offer period, receive one (1) in-stock book per request. Limit (1) book per week per household. Limit three (3) books total each calendar year, between January 1 and December 31. Offer valid while supplies last. Howard Bailey Financial, Inc. reserves the right to cancel, terminate or modify this offer at any time. Void where restricted or otherwise prohibited.
Casey Weade: Linda, welcome to the podcast.
Linda Fodrini-Johnson: Thank you. Thank you for having me.
Casey Weade: Well, Linda, I’m excited to have you here, and to be completely honest, I don’t know that I was initially and I say that because I said, “I don’t know what kind of questions I would ask somebody like this.” We haven’t had someone specifically discussing these topics with our audience on the podcast, but I know it’s an important issue and I’ve had it on my docket for some time. And the reason that you’re actually in front of me today is one of my assistants, so one of our team members here brought you to me and said, “We need to interview Linda. We need to interview Linda.” She has some issues in her own family that she’s dealing with, that you help people with each and every day, and she really pushed me to have this conversation.
And after we had a little pre-interview, and I dug into your book and everything that you have out there, all the information that you have, I was excited to have the conversation and also presented you to a friend of mine that is in this industry, the field of caregiving. And he was really impressed not only by your bio, but he was familiar with you as well, and he’s excited to listen in to this conversation and share it with all of his followers. So, hey, with that, I just wanted to set the stage so that you know I am excited now. I am excited to have this conversation, and we have a lot to cover today. But before we get into that, this has been a passion of yours since the early 80s, you’ve been in caregiving and aging. Why and how did aging and caregiving become such a passion of yours?
Linda Fodrini-Johnson: Good question. I saw my parents struggling with both of their parents, my dad’s mom and dad and my mother’s mother at the same time as having– I’m the oldest, I have three younger brothers. They were teenagers, and my parents were going absolutely crazy, trying to find resources, trying to take care of themselves, their kids, my dad’s employment. My mother was a stay-at-home mom. Thank God, there are not many of those around nowadays, but she could try to manage the four of us, and the eldercare responsibilities. There were no resources. There just weren’t any resources.
So, I got married early, I had some children of my own. And then I went back to college to find a career that would address this issue, thought it would be social work, ended up getting a degree in psychology, and get licensed as a family therapist because there wasn’t really a geriatric care management degree. So, I have an undergraduate degree in social work. And then I discovered there was such a profession just beginning. So, I am kind of a pioneer in that, and I have been since that education, helping older adults and mostly working with adult children of older adults. But as I get older, I find more people, my peers calling me about taking care of their spouses, or how do my children know what to do about me? So, it’s gone the full spectrum. So, great question.
Casey Weade: Well, I did not realize there is this whole industry of individuals out there like yourself that are doing family counseling and therapy around aging and elderly care. So, it’s a beautiful thing that you’re providing, and more people need to know that it’s available before we get in to specifically, say, care and caregiving, dementia, Alzheimer’s, family therapy, etc. I wanted to ask about aging specifically. Why do we need to be educated in your opinion on aging? This seems like something that we all know we do. We know aging is. Why do we need further education around it?
Linda Fodrini-Johnson: Well, I guess there’s been so much research on healthy aging and healthy brain. I mean, all of us don’t want to go down the Alzheimer/dementia slide, right? So, what can we do now at age 40 or 50 to prevent that slide? In fact, my 18-year-old granddaughter going off to college in London said, “Grandma, you are so healthy and so engaged. Can I see your health coach?” She wanted to have her genetic/genome done, so she doesn’t go down a path she doesn’t want to. Well, at age 18, she started to think about healthy aging.
So, I think healthy aging is what we all need, and I’ll get into that and I’m sure you’ll ask me or somebody will ask me that question. So, there are things we can do so we don’t go down the same path our parents are going down now or went down. We can take a hold of that. We want to live life until we end. Like Being Mortal, Dr. Gawande’s book, we just want to live life healthy and wisely, so. And then what I have to offer you all is definitely education as one of the things I have a lot of passion about and I’ve been doing my whole career is educating older adults, I should say adult children on how to be a good son or daughter, and I don’t mean good in the perfect, I mean wise, maybe a wise son or daughter.
So, when your parent starts down a path, you know where to direct them and how to find resources. And a lot of these classes have to do with communication. It’s all about how you talk to your older parent to get them to do the planning. We talk about planning. That’s important. We talk about the end of life, something none of us really want to talk about, especially if we have a real loving relationship with a parent, we don’t want to lose them. But if you have these conversations early, then you can live life and you’re not under a little bit of stress. If the conversation hasn’t happened yet, Casey, there’s always an element of stress on the unasked questions that you don’t know where your parents’ finances are or how much they get per month.
Are they getting the entitlements they’re entitled to if there are entitlements that your parents might be entitled to? A lot of people don’t know that. And what will you do if your parent has a fall or a crisis or hospitalization and you need to take over those responsibilities, like paying bills or bringing in care? How do you find care? What is good care? What’s the checklist on asking good questions? Since the pandemic, I’ve added questions to my checklist and I now want people to ask questions about what would you do if there was another pandemic before you put your parent into assisted living or skill? I totally disagree with how they– imprisoned, I want to use that really firm term imprisoned older adults in their apartments during the early part of that pandemic. It really was detrimental to the mental health of many, especially those with dementia or early dementia. They need that social stimulation, that’s why they chose it or their adult children chose it for them. So, it was really damaging to many, many people.
So, there’s another question to ask about. God helps us that we get out of this completely, but it’s something to think about. So, things change, research changes, new medications come on the market. Some are good, some have side effects that aren’t really talked about. And so, I can help guide people on asking the right questions of their physicians as well.
Casey Weade: We did receive a question on that from Jenny, but before we get to COVID and some of the things that she actually experienced during that period of time, you talked about this being a relatively new field, and 30, 40 years ago, we didn’t even talk about long-term care, what’s long-term care? It wasn’t something that was generally known by individuals of what that is or how we plan for it. And now, there is this field that you’re in that continues to expand. How do you see as demographics continue to evolve? We continue to see extensions in our longevity due to medical advancements and just knowledge around how to better take care of ourselves. How do you see the concept of caregiving continue to evolve into the future?
Linda Fodrini-Johnson: Well, there’s a shortage of caregivers, so we were going to have to be creative. And we’re going to have to be creative as a society and then creative as communities and creative as families, so that’s got to go in three ways. And sometimes, it starts with just a family, and then it’s a community. And I’ve been involved a little bit on the government scene but not as much as community and with individual families. But my association has tried to be an advocate with our congresspeople about this issue.
So, we are going to need more care, and technology is going to step in and have to play a piece of that, kind of the monitoring type of technology of monitoring somebody we know they got up and they went to the refrigerator, we know they went out the front door, and they were gone for 30 minutes. And so, there is technology to help keep people independent, but I think we need to think about the concept of codependence, all of us. We are codependent, whether we think we’re not. We are, we’re codependent on people to grow our food, physicians to take care of us. Our garbage should be collected and picked up, and we are codependent. We are codependent, and I think that’s a good thing. We need socialization, too. We aren’t, even if we’re individuals and we like to be alone in our own space, we’re still codependent and we need to be connected.
So, I think that we’re going to see more creative ideas on co-housing and that co-housing creative ideas kind of fall into your population of 55 to 65-year-olds. People are getting together with their friends and saying, let’s build something. Let’s build like three units that are connected with a social hall in the middle. And if we have to hire a caregiver, we have a caregiver apartment that could take care of all six of us. So, you see what I’m saying about creativity? I think we need to think creatively because there is a shortage in caregiving. There is also quality of life issues that’s most important to me when I’m working with a new individual. Whether it’s a care management family or counseling, what’s most important to you? What gives your life pleasure and joy?
And we want to keep that in your life to the very end, no matter what your abilities are, something of that that gives you pleasure can still be in your life and might have to be adopted if you’ve lost some sensory, vision or hearing or touch or mobility. But it can be in your life, and we want to keep joy in life. So, this long-term care right now, we think of it as assisted living and continuing care retirement complexes that have all three levels of care, we think about home care, we think about hospice care, we think about nursing care. But remember, there is creative care, and that creative care comes from you, the individuals putting it together for yourselves.
Casey Weade: You just talked about so many different types of care. You talked about independence. We talk about quality of life, we talk about housing, we talk about LTC and joy, and there’s so much that goes into this. You’re a certified geriatric care manager, and maybe we need to take a step back for a second, just define what is geriatric care. How do you define geriatric care? Is it really that broad? Is it easier for us to define than it seems?
Linda Fodrini-Johnson: Well, my association changed the name since I was the president of it, called the National Association of Geriatric Care Managers to the Aging Life Care Association. So, that’s where you would go to find somebody around the country. So, maybe aging life care is a better term. Geriatric care management really encompasses a lot of disciplines, number one, understanding and aging, but is understanding the illnesses of aging, the medications, the social implications, the legal, that’s really important. The legal concepts and legal tools that the adult children need, but the parents really need to have life their way. As I was talking about earlier, we want to have life our way to the very end, and somebody hopefully will ask me about the legal tools now to have that done and how to construct it. I call it the roadmap.
So, I think a geriatric care manager is either like the hub of the wheel or the travel agent for this journey we call aging and alerts the individual to all the elements that they might not have thought about when they originally met with experts such as myself. And I like to meet with them before they go to their financial planner and before they go to their elder law attorney, so I could talk about the costs of some of these long-term care options and maybe spark that creativity in a couple or an individual as well.
Casey Weade: How do you handle that? And specifically, when it comes to housing, we have CCRCs, we have assisted living, we have home health care, we have nursing home care. Is there a way that you can help us simplify all the options or give us a framework or a process that can simplify this decision-making process to figure out what are all our options, which one’s the best one for us, and not just be overwhelmed, which often happens in our industry? People are overwhelmed while I have ETFs, have stocks, have bonds, have annuities, have life insurance, and there are 20 different kinds of each. And then there are thousands of stocks I could own. It just becomes very overwhelming. Do you have a process to help simplify, specifically the housing situation?
Linda Fodrini-Johnson: Because of what I do is so individualized, Casey, I think it depends on each individual. I want to know what their medical diagnoses are, are any of them reversible because I’m definitely into good health? What can I do there? CCRC, continuing care retirement community, for all of you listeners out there, is usually a situation where you buy into, very good for those without families and solo agers or sometimes called the elder orphans, but many of them won’t take you if you have a progressive illness. If you have MS or Parkinson’s or have already been diagnosed with MCI, which is mild cognitive impairment, they won’t take you. Some will. They’ve changed a little bit over the course of my career. But again, that’s a good option.
But do you have $300,000 to a million dollars to put into one? You have to buy in, you buy into that. And is that a good option for you? Does it match your lifestyle? Are you going to like to be in a highrise? Are you going to give up that two-acre lot that you have and your chickens and your goats and your dogs and your cats? Are you going to be okay with that? Is that the life you see? Or do you see yourself doing something else? Again, it’s going to depend on that individual. So, we have the CCRCs, we have retirement communities, again, across the country. We have one in California called Rossmoor where people buy there, they call them manors and they’re all different styles, but there’s no care provided there. It’s just a retirement community, very active, the social engagement is high, golfing, swimming, clubs, movies, trips. I mean, it’s concerts, it’s great. And those are throughout the country as well. That’s independent living that’s not much different than your own home, and you bring in care when you need it or you move to assisted living or CCRC.
And an assisted living has often more than one level of care, and it can get more expensive as your needs grow. So, they have a menu of services. You move in at $6,000 a month, and within a year, you’re at 10 because you needed more help than you thought, or the marketer didn’t tell you you’re going to need, but I will tell you, you’re going to need, anyway. And then there are even small residential care homes, and in the assisted living industry, there are many, many different options. And I kind of like all of them, but there are certain ones that are better for certain individuals. Some have swimming pools. Some are into social engagement. Others don’t have a lot going on. They’re kind of more like a warehouse. I don’t have too many of those in my community.
So, you have to shop and know somebody that knows them. It’s not unbiased, actually. It’s about your choice. And then we have small residential care homes throughout the country that are licensed for sometimes six people, small homes, and everybody’s community. And for very frail elders, that’s sometimes the best choice. Somebody, this 90 with mobility and hear/vision loss, that might be the best choice for them. So, it’s all about who you are and what you value.
Casey Weade: And it sounds like you’ve validated my position. There isn’t an easy button. There isn’t just an assessment that we can take to say, “Oh, that’s the one that’s right for you,” which I can make it parallel with our industry. If you’re looking at just simply starting to invest, you can go through a basic assessment, use an online robo-advisor and start investing. If you get to retirement, now, you have to make it personal. It’s a personal financial plan or a personal care plan in this respect. We need to take a look at all the aspects of not just your financial life, but as you stated, also your personal values. Your book is titled The Empowered Caregiver: Practical Advice and Emotional Support for Adult Children of Aging Parents. And I wanted to ask, I want to say one is a caregiver but more specifically, what is an empowered caregiver?
Linda Fodrini-Johnson: One that has the knowledge they need for the journey ahead. And I wrote that book so you could read it on the airplane when you’re going to see your mom or dad. I wanted to have a snippet of an issue, some strategies, and an affirmation. So, these are really short chapters, sometimes have a checklist, like you asked me for, but not quite the one that’s going to tell you exactly what kind of housing your parent needs or that you or your spouse want to be looking for or your partner that you’re going to have to do with a little one on one, like your financial planner who helps you choose which way to go. One of my friends calls me a sherpa and uses a sherpa to get on the right road for you, yeah.
Casey Weade: Sure. Well, I want to dive into specifically a couple of elements that came up and nearly every question received, and that was dementia and Alzheimer’s. First, before we even dive into dementia and Alzheimer’s and what to look for, how to prevent it, resources, etc., can we first define and just kind of compare and contrast what is dementia? What is Alzheimer’s? What’s the difference?
Linda Fodrini-Johnson: That’s a one-hour Zoom class that I teach.
Casey Weade: Well, I guess from my own personal experience with my grandmother, I walk in, and she’s just asking the same questions over and over again, I walk out in the hall. I said that she had Alzheimer’s. They said, no, she has dementia. And what’s the difference? It’s kind of the precursor to Alzheimer’s, but they didn’t really offer me much more than that, and I’m not even sure that was the correct answer.
Linda Fodrini-Johnson: It’s not.
Casey Weade: So, what is the difference between dementia and Alzheimer’s?
Linda Fodrini-Johnson: The term fruit includes apples and oranges and pears, right? Dementia includes Alzheimer’s, vascular dementia, Lewy body dementia, and frontotemporal dementia. All of those are different dementias. Alzheimer’s is the most prevalent of the dementias, right? And dementia is a cognitive impairment that affects usually and it starts differently in all these different dementias, all of the brain, it impairs all of your abilities. And when it starts to impair the activities of daily living, that’s when you need to step in and come in with a plan to keep somebody safe because their judgment is impaired, and that makes them very unsafe, and definitely, in the financial world, a target to stamps if somebody’s judgment’s impaired.
Casey Weade: So, let me interrupt if I may. So, all Alzheimer’s is dementia, but not all dementia is Alzheimer’s.
Linda Fodrini-Johnson: Terrific.
Casey Weade: Please continue.
Linda Fodrini-Johnson: And again, a woman called me about her own memory loss, and I said, I really need you to go to the University of California’s Alzheimer’s Diagnostic Center and tell me what kind of dementia you need, so I can help her choose the right housing, or I can get her to a health coach that maybe could help her change her lifestyle to improve her memory somewhat. You’re not going to be able to stop Alzheimer’s disease if it’s Alzheimer’s disease, but is it something that’s reversible? Does she have diabetes that’s not under control? Does she have an infection in her body that causes more confusion and disorientation? What’s going on with this lady so I can help her with her roadmap? I need to know that. It’s very important to me. And for families as well, I think you need to know there’s something, Casey’s grandma might have had something we call MCI, which is mild cognitive impairment.
And mild cognitive impairment, that early stage usually only affects short-term memory, not long-term memory, not her ability to take care of her finances, small finances, not a financial planner, pay her groceries and/or utilities and stuff like that and take care of her personal being, her personal care, and her home. And again, that gets challenging. If you have mobility issues or visual issues, you might not see that you have a stain on your clothing, and it’s not because you’re ignoring that you don’t see it. So, there’s a lot we need to think about, but mild cognitive impairment, MCI, if somebody has been diagnosed with that, about 50% of those people will convert to Alzheimer’s, and the other 50% just stay where they’re at, just a little bit of short-term memory loss, and they don’t go down that slippery slide. So, that’s the shortest lecture I’ve ever done on dementia and Alzheimer’s.
Casey Weade: I have more clarity than I’ve ever had before, though, so I appreciate it. But now comes next is how do we recognize it? How do we recognize those precursors to say, hey, you need to go get an exam or you need to go do some type of diagnostic? And I take it, it’s not when my wife says I told you that already, it’s probably a little bit more than that.
Linda Fodrini-Johnson: It is a lot more than that. So, the red flag is definitely short-term memory, but in some of those other dementias that I talked about, like frontotemporal dementia, which is the executive functioning of our brain, our memory is intact, but we are really off base with the questions we ask and our behaviors. I remember a client I took out to lunch once, and she definitely had some frontotemporal dementia and she said to the waitress, who was a very large lady, “Why are you so fat?” And she said it very loudly. Well, that’s not very kind and that’s not very nice. And those are the kinds of things that there is no censor, but the memory was there.
So, again, that’s why it’s important for me to know as the detective with a family and you as adult children to know that, okay, mom’s memory is good, but her behavior was pretty off, and it’s never been that way. Something’s changed, something’s not– some of it, well, we’re all unique and have unique personalities, but something that’s new and you’re seeing it more frequently that mom isn’t clean, the house isn’t clean. Mom’s calling you about the same question four times a day, or within 10 minutes, you get phone calls. I have one son in one of my support groups that his mother called him 30 times a day about her check statement, her checking account statement. And I finally had him solve that problem with redirect the bank to send all of those to you and not to mom. So, that was an easy fix. But Mom found another reason to call him 30 times a day. She was anxious. Being alone was not good for her.
So, again, and also, are your parents getting notices that they’re going to turn off the utilities? Are they paying their bills on time? Just odd things. I remember my mother, my mother had vascular dementia caused by strokes, and she was socially pretty appropriate, but still having some judgment issues and she got scammed twice, not big, but she did, and before she had another stroke and had to move to assisted living. So, there were enough red flags that everybody in the family was concerned about mom leaving the keys in the garage. She lived in San Francisco. That’s not the place where you want to leave your house keys in the garage when you go off for the day. So, this unusual behavior that you haven’t seen in your parent, the memory loss, maybe also medications that a doctor prescribes, but mom or dad never takes. You see the date on the bottle.
Casey Weade: It seems that it’s easier for the family to recognize these red flags. Can we recognize these things in ourselves as well? Is that possible?
Linda Fodrini-Johnson: It is possible. And I’m glad you asked that, Casey, because I want to talk about healthy brain. But I think I have more people calling me now, like the woman that called me and I told her I wanted her to get a diagnosis before I can help her design her roadmap and send her to the right financial planner and the right elder law attorney, their attorneys that specialize in elder law as well. And I just need that help, but if she doesn’t call me back, it could be her memory. And I just have space with that lady yesterday, actually. She called me originally in October. And now, she’s giving me other excuses.
And she has no adult children. She’s one of those solo seniors with a husband who’s 10 years older than her. She’s 80, her husband is 90, and no children. So, I’m a little bit more proactive with this lady who’s been referred to me by a friend of hers. So, I’m not going to leave her out there because she might never act on what I asked her to do. She might need somebody to help her a little bit more proactively. She might not have that ability. The ability to sequence is also impaired with dementia. So, it’s a sequence. It sounds simple. You make a phone call to the clinic, you make an appointment, and you go to that appointment, right? It seems so simple to us, but that’s very overwhelming to somebody with a dementia. And her overwhelmedness with me, while she had to have a new roof put on and she didn’t know how long or what that would take and she was all confused about that, I said I’d call her back in January, but I’m going to probably have to make an appointment and go see her and get a relationship started.
Casey Weade: Now, how do you initiate that conversation with a loved one when you see some of these red flags?
Linda Fodrini-Johnson: Great question. Don’t use the word should, I’m starting with the don’ts first, right? You should mom, you should dad, you need to. If you go there, you’re going to get either resistance, or I don’t have a problem. You’re going to get one of those things. Very rarely do I have the older adults say, oh, I’m so glad you asked me about that. I wanted to go to an elder law attorney and renew or update my legal documents that haven’t been updated for 25 years since your dad died. So, that’s not going to happen very often.
So, you’re going to have to approach. It is, I am, use it, we call it the “I” messages in psychology. I’m concerned about you, mom. You’re not going out as much. You look like you’ve lost some weight. Can I go with you to your next doctor’s appointment? It would be helpful to me just in case you have a crisis, a health crisis that I’ll know your doctor. So, you could start really easy there. You could also start with stories like, you know, I was talking to a friend of mine, and they just went to an attorney. And you know, there’s some new laws, new changes, tax laws that you and dad might want to look at in your financial planning and in your legal planning. Would you like me to go with you? Or do you want to set up an appointment and ask about those things?
And then if you really think there’s some dementia going on, again, that financial planner, you know that, or that attorney can’t talk to you, but you’ve given them some red flags of this is what’s going on with my mom and dad. They’ve made an appointment to see you. I just want you to know that they’re both losing weight, they’re missing doctor appointments, their house is in disarray, they fired their landscaper, the garden is a mess. So, you can give some heads-up, but they’re not going to be allowed to talk to you because they are under confidentiality rules, HIPAA rules, not allowed to, and in the financial world, you have your own criteria and ethics of who you can and cannot talk to. But you can alert them, and then they can take their own professional manner and approach those issues.
Some doctors, I will warn you, will say, your daughter sent me an email or your son sent me an email. So, you can ask for confidentiality in that and just ask them to ask these questions or send your parent for a further workup on what you’re saying, like to a neurologist or to a clinic. The Medicare annual evaluation that Medicare pays for is supposed to have a memory screen. I find that a lot of these docs don’t do it. I don’t know why. I think they don’t want to see something because somebody is socially appropriate, but they need to do this memory evaluation. And you just might want to send the doctor a reminder that you know that the Medicare annual evaluation includes that, you want to make sure they use it this year with your mother because you’ve seen some changes. So, a little bit of helpful hints.
Casey Weade: Yeah, well, that was all very tactful. Don’t come in the door and say, mom, you have dementia, you should go to the doctor, that seems like the wrong way to handle it. So, you get with some other ways to handle that, that might be much better. And this is perfectly in line with one of our fan questions. If you have questions you’d like to submit to our guests, there are two ways that you can do that. One, you can sign up for a Weekend Reading for retirees, the email that hits you every single Friday, sign up at RetirewithPurpose.com. All of our subscribers have the opportunity a week prior to the interview to submit their questions or just follow us on Facebook.com, of course, at Howard Bailey Financial.
Our question that we’re going to be addressing today here with Linda is from Ashley, and Ashley says I’m an only child with older parents, and my mother has mild dementia. I’m single, and all of our extended family lives far away. If the time comes when my mother needs more care than my father can provide, what are some resources you would recommend?
Linda Fodrini-Johnson: Well, you can try to find an aging life care expert to help you in that community and to know what the best resources are because that’s really important. And then you might want to start with hiring a caregiver, and I’m saying hiring a caregiver, but to avoid resistance, I want you to name that caregiver something your mother would enjoy, a personal assistant, a cook...
Casey Weade: Pool boy.
Linda Fodrini-Johnson: Pool boy, great. You know what really works well with men? Trainer. I have used that so many times, and the trainer just happens to be a great cook.
Casey Weade: That’s great.
Linda Fodrini-Johnson: And he likes to be a neatnik, too, so he picks up things. So, you’re going to start with calling that person something else. And the most important thing in that relationship to make it successful is to start slow, two hours. That’s it. Maybe two hours once a week, two hours first with you, you being there, then the caregiver comes the next time with you. You go on an errand so that caregiver is with your mom for one hour while you’re sitting at Starbucks, having your latte, and you come back and say you got the stamps at the post office or whatever. I call those therapeutic tablets. That’s another story, but therapeutic phablet that you used to get a relationship started.
And then you might have to pay that caregiver for four hours, just do it, but don’t overwhelm your parent with this stranger in their house if you developed a relationship. And then the third time that caregiver shows up because she was in the neighborhood and she’s got some fresh blueberries or pumpkin pie, whatever it is that she has, and she just chats with your mom. And then next week, she comes back on her own and said, I saw that you need some gardening out there, just start with something that’s not so personal, even though she needs a bath and she needs her haircut. And then you just let it develop a relationship. If a relationship develops, that caregiving assignment will be successful.
Casey Weade: We have a follow-up question from our Facebook audience, and it’s from Emily. Emily says, how early in life can the signs of dementia actually show up?
Linda Fodrini-Johnson: Hi, Emily. There is a scary trend of more and more people being diagnosed in their late 40s and 50s, and I’ve had clients with toddlers that have started down this path. So, you want to learn about healthy brain aging. If it’s in your family, especially, you could do some genetic stuff as well, testing, to see if it is something that you can change your lifestyle and hopefully prevent. But definitely, in the 40s and 50s, we’ve seen more of that frontotemporal dementia with the strange behavior. It looks more like a mental health issue because memory is still intact in the early stages and those four people run around looking for answers before they finally get a diagnosis. It’s a challenging diagnosis, so is Lewy body, it’s kind of like Parkinson’s. But anyway, I won’t get into that, but it can be seen early, Emily. So, don’t think because you forgot something at the grocery store, or as Casey said, his wife tells him, my husband does the same thing. You told me that before, and they keep repeating it because they didn’t act on it, but like, okay, you’re going to do, the recycling needs to go out.
Casey Weade: And don’t jump to conclusions. But that’s really scary that it could show up as early as your late 40s. I am not too far off, so that’s really concerning. And now, I want to ask, how do I prevent this? How do I reduce the risk? You touched on it, just kind of dropped brain remodeling in there a couple of times. What is brain remodeling? How do we leverage this to prevent or reduce this risk?
Linda Fodrini-Johnson: Yeah, neuroplasticity. That’s our brains can regenerate. When I was in college, I remember saying that you damage a brain cell, that’s it. Now, we know about it can regenerate. Can’t really cure Alzheimer’s yet, but we think some lifestyle changes can prevent it or stave it off. So, suppose you were going to get it at age 66, and now, because of your lifestyle, it’s not till 76 that you’re going to show some signs. And remember, Alzheimer’s is a 20-year course from diagnosis to the end of life.
Casey Weade: Can you say that again?
Linda Fodrini-Johnson: Alzheimer’s?
Casey Weade: What’s that mean, exactly? It’s a 20-year course?
Linda Fodrini-Johnson: From diagnosis to death, 20 years.
Casey Weade: So, that’s life expectancy?
Linda Fodrini-Johnson: No, that’s being confused and needing care.
Casey Weade: On average, it lasts 20 years?
Linda Fodrini-Johnson: On average, it lasts 20 years if somebody is relatively healthy. That’s a great question, Casey, because what happens when you have dementia is you don’t have any– what do I say? Worries about the future because you can’t plan the future, right? And you have no guilt about the past. So, you’re only in the present. So you’re in a stress-free zone. And when you’re stress-free, you’re less likely to die of cardiac issues or cancer. So, these people with this memory problem have eliminated some stressors because their mind can’t function well. They live longer, they live an average of 20 years from diagnosis.
Casey Weade: So, dementia or Alzheimer’s more specifically, actually, extend your life?
Linda Fodrini-Johnson: I’ve never heard somebody reframe that that way, but yes, it does. I’m going to go to healthy brain next, but all of us should be going to those places, whether we’re using meditation or yoga or whatever mindfulness activity because mindfulness is one of the four concepts of healthy brain that all of us are so busy planning, doing, being that we’re not actually in the being place and just kind of taking that deep breath and letting go and finding some activity every single day of mindfulness. I do a walk every day and see my scenery behind me, and that actually is renewing. So, you want to physically exercise at least 30 minutes every day, if you can. And I know people are busy, but we need to factor this healthy brain into our lives and eat a healthy diet. And there’s the MIND diet, the Mediterranean diet, those are the two diets you want to look up.
Casey Weade: I’ve been brushing my teeth with my left hand a lot lately.
Linda Fodrini-Johnson: That’s really good, too. It’s even better as you get older to do something you’ve not done before, and that really is a good case. It’s not just a little funny thing. It’s a good thing to do and stand on one foot, balance. Part of your exercise routine should include some balance exercises because falls can change the trajectory of your entire life at any age, especially as you get older. So, you work on balance and exercise, you’ve got the MIND diet, and you have the mindfulness concept in your life daily.
And another little trick of mindfulness is gratefulness, and I have a simple exercise of every morning, think about what you’re grateful for in your life, one or two things. I had great parents, whatever it is, I had a fun childhood, I grew up in San Francisco. So, at the end of every day, think about what you’re grateful for that day. So, it’s just kind of helping you get connected to positivity. What you’re grateful for will help you with that.
Casey Weade: It’s amazing that some of these little practices would actually prevent dementia or Alzheimer’s, just gratitude or mindfulness, meditation, brushing with your left hand, it’s just a combination of so many different elements.
Linda Fodrini-Johnson: And then your podcast is Retirement with Purpose. Have purpose in your life, always have purpose. Socialization is extremely important, and that’s why so many people, seniors failed during the pandemic, especially those in the early stages of dementia really went down quickly with that lack of socialization. And purpose, especially you guys out there, so many men, when they retire, they don’t know what to do with themselves. Women seem to be more connected to outside activities, but a lot of men have been so focused, and I think we’re going to see this with women that have been in a career all their lives. They didn’t have home time, even I had some down home time with my children when they were young. I didn’t work until the youngest was in kindergarten.
But nevertheless, I did work. And my mother never worked. My mother worked for me when I had a big agency as a personal assistant, but she never worked in her life. So, purpose is really important, and then that social engagement. Get involved in the Rotary Club or the Lions Club or a religious institution or fighting for the environment or anything that gives you passion, be engaged in that, be engaged in purpose in your life. It will be a better world too of we all volunteered. I used to say 10% of your time, you volunteer, and 10% of your finances, you give away someplace and you’ll be successful, but I don’t know what that has to do with Alzheimer’s prevention.
And again, Casey was saying that all of these things will prevent it. It’s no guarantee they will prevent it. If you’ve got a genetic predisposition that they haven’t found a way to change that gene yet but just wait. I’m hopeful of research and science. It just pushes it off. You’re going to be healthier in other ways, too. You’re going to have a healthier heart. You’re going to be mentally healthy, your mental health. You’re going to just see life more positively, and that affects your total health.
Casey Weade: Well, that’s all great stuff, and we do a great job taking care of ourselves. But sooner or later, someone may need to step in and take care of us, whether that’s dementia or Alzheimer’s or something else completely different for that matter. And that’s where a lot of the questions that we had come in were around family conflict. And so, I pulled out one of those questions that I wanted to kind of transition into here. And it came from Carol. Carol asks, “How do you handle conflicting opinions or options between children of a parent with dementia?”
Linda Fodrini-Johnson: Well, I would have a family meeting with a geriatric care manager or aging life care expert that has a mental health background when there’s a lot of conflicts. I have a little acronym called FIRR, F-I-R-R, and the first F starts with facts. So, hey, Carol, so maybe the fact is, your mom needs somebody– I’m going to take my mom. Alright. I’m going to take an example of my family. My mother needed to take a daily blood thinner. This is really important to preventing those strokes that she was having. I work full time. I had a business called Eldercare with 200 employees. I just sold that business. So, I’m just doing what I love to do now.
So, you say to one of your siblings that mom needs to take this medication every night, and she’s not remembering it. And the impact on me, the impact on my life, I’m really tired. I’ve got this business to run. I’ve got a husband. I’ve got a home to run. I just can’t do it. I can’t call her every night. It’s so much for me. And then, the first R is respect. You have to say to my brother, Gary, who lived close to my mom, “Hey, Gary, I know you take pain medication and you really can’t drive mom anyplace and you can’t really go over and help her much because of your back problems, but could you call her three nights a week?” And that’s I should say, that’s the last one. Then what are the last ones, the R? It is the results that I want.
So, the result that I want is for Gary to call Mom three nights a week so I could call her the other four nights a week, or Carol, one of my brother’s other brothers that lived quite a few hundred miles away to call her and be no problem for them to call, either, but they were both working full time. My brother was not, he was on disability.
Casey Weade: So, here’s step one, we follow the FIRR, right?
Linda Fodrini-Johnson: Yes, follow the FIRR.
Casey Weade: That’s fact, respect, result, the good step. However, it’s a lot like marriage, right? We go through those first few steps. Let’s say they don’t work, then maybe we need marital counseling. And then the next step in this might be family counseling?
Linda Fodrini-Johnson: Could be. But before you want to engage with a stranger, a lot of people don’t want to bring in a stranger. You can try a family meeting on your own. And my tip on that is you gather everybody, and right now, it’s usually on Zoom, and I’ve done a lot of these on Zoom. But your kids might live a distance from one another as well. So, this is a good thing about the pandemic is Zoom, and I’ll get into that again. So, you gather everybody together, and there are two questions that everybody’s going to ask and answer. The two questions are who are you most concerned about? And I’ll tell you why I ask that, but who are you most concerned about? And the second question is what would you like to see as a result of today’s meeting?
And I start not with the person that called the meeting, that person goes last. So, if you go around the room clockwise, for me, I have that person sitting on my right side and I go around my left like the clock, clockwise and I ask each person that question. And I’ll tell you a story. And I was working with a family that had three teenagers. Dad was in a nursing home. His wife lived not too far away, where she could visit him with a short bus ride, she didn’t drive. The children lived across town, the daughter, with these three teenagers, two were in junior college and one was in high school, lovely family. Daughter was so upset with the nursing home, not giving dad the care. She wanted to bring him to her home, put a hospital bed in the family room, and take care of him herself. She was a teacher. Her husband was a teacher. She figured she could do it with a caregiver and her.
So, I brought them all together, including mom and her brother, and I went around the room and asked everybody that question. And not everybody was concerned with grandpa. Some of those teenagers were concerned about mom burning out and another one of the teenagers was concerned about mom and dad’s marriage. And the mother, the wife of the husband in the nursing home, was concerned she wouldn’t be able to see him every day because she’d be across town, and the daughter wouldn’t be able to leave the dad and come and get her to do that visit. So, by the time I got around to the daughter who was sitting next to me, she was crying. There were other people crying. It is sad. It’s really hard, and there wasn’t so much conflict.
But the daughter didn’t know the other people were worried about different things. And sometimes, the worry or the conflict could be the finances, it could be the mental health, it could be the puppy or the dog or the cat, or it could be something else that somebody is worried about. And you need to get that out before you can get to peace in a family. And then when it got around to that daughter, she turned to me and she said, “Linda, could you make it better for dad in the nursing home?” She realized it wasn’t going to work with dad living, sleeping in the family room of three active young people, a really nice family. And it was good that she invited me in to have the family meeting. But you can do that family meeting, I have told people they could do it themselves, but if there’s a real conflict, if there’s always been conflict, I think you need a mediator, a third party to help you do that. Long answer, Carol.
Casey Weade: Well, this is a whole really helpful information, Linda, and I don’t want it to stop. So, do we have another 10 to 15 minutes?
Linda Fodrini-Johnson: Sure.
Casey Weade: Great. Well, let’s go to that right now. How do we find that person? And how do we present that to a family that may be opposed to therapy? How do we find the right person? You mentioned an aging life care expert or a family therapist. To many, that’s probably going to be a new term. They didn’t even know this person existed. How do we find them? And then how do we present it to the family?
Linda Fodrini-Johnson: Yeah. And again, that person, once you find that person yourself, the aging life care, it’s just AgingLifeCare.org, and you put in your zip code. And you could see what kind of background people have if they have social work or mental health background. You’ll see that if that’s what you really need help with to start with. And so, you find the person, you talk to them and say, does this person– in fact, I don’t get interviewed very much, but the family just interviewed me. And I’m seeing their dad this afternoon for the first time. And dad’s really depressed, and he’s probably getting towards the end of his life and he doesn’t want hospice.
But nevertheless, I am a therapist, and they were looking for a therapist, not specifically a geriatric care manager, but that’s what I bring into my working with the family. And they interviewed me and they interviewed somebody else, and they thought I was the best match for their dad. And that’s fine. I really encourage you to do that because it’s about personality and approach. And they asked me what my approach is and it’s strengths-based, I’m going to look for the strengths of your dad and where I’m going to go with this. He can have joy in his life to his life ends, he doesn’t have to die now. Before he dies, he can have joy, and I’m going to work with him on that. That’s my goal. And that you want to know what the goal is of that person, and it doesn’t match.
And what are they calling me? A counselor. So, each family will call me something different. The one that works the most, Casey, is Linda is somebody that knows all the things that are free for seniors. It’s the money thing often. We are resource magnets, I guess. We love to collect resources, people in my profession. And if we don’t know them, we have a listserv with 2,000 members that we put out there, and like somebody just put it on– my mother won’t wear an emergency response system because they’re ugly. Well, somebody just put on this beautiful piece of jewelry that I would wear, anybody would wear. So, I could find a resource, I guess is what I’m saying, or we that do this can find a resource that you might not know exists.
Again, so a resource person, a person that knows the community is not so frightening, like I’m bringing in a psychotherapist to work on your depression, mom. I don’t have depression. It’s like, yes, you do. You’re not eating. You’re not going out. You’re not doing it. Again, we’re not approaching it that way. This is somebody that knows the resources in the community. And again, somebody might say, “I need a counselor,” then you’re going to call me a counselor or somebody that’s going to help us. What I’ve been doing more lately in my life is roadmaps, help us with a roadmap, make sure we have what we need. I work a lot with spouses, with one spouse slipping down that slippery slope with a dementia or something else progressive, and helping the well spouse stay well and not go down with her partner or his partner. And that’s really important as well.
Casey Weade: Well, it’d be nice if we had a retirement plan before we got to retirement. It’d be nice if we had an eldercare strategy before we actually needed some type of eldercare. But so often, as we have this discussion with families we work with, my dad included, they say. “I’m just going to take a long walk off a short pier.” Or it’s the gun in the drawer next to that, and I get, dad, you’re fine. I can be able to find the gun if it really comes to that, I’m not going to be able to pull the trigger. So, let’s say that we get somebody over this hump, and they go, okay, I should have some type of strategy. How do we better plan ahead? So, maybe we can avoid family counseling, and maybe you can present this from your own experience. How have you planned and communicated with your three children and five grandchildren?
Linda Fodrini-Johnson: I wrote a book, that’s it. And they all have it. Even the granddaughter, who has a dad with a brain tumor, said with tears in her eyes, “Grandma, this is going to help me so much taking care of my own dad.” So, again, to have some tools. But one of the things I want to kind of promote is there’s something called PrepareforYourCare.org. PrepareforYourCare.org is an advanced health care directive that was designed by the Regents of the University of California. And I’ll tell you why I like it. I like it as a talking template, you can use it and you can print it up. I think they have a version for every state that has the legal language in it that can be your document.
My husband and I filled this out, gave it to our attorney, and he just wove it into the document that he was going to do for us. So, it has my language in it. But what this document does, it really forces you to look at decisions you might have to make, especially spouses. I wrote a newsletter not too long ago about do you really know what your spouse or partner wants if they have a health crisis? An attorney I know in the same community that reads a little newspaper, he said, “Linda, I never had that conversation with my spouse about what she wanted, didn’t want if she got in a health crisis.”
So, this document is in large font, it’s in color, and it has a clipboard in it. Now, how easy can a document be for you to look at or even share with a parent to say, hey, mom or dad, you don’t have to fill out this, but this would be really helpful to me if I knew what your wishes were. I can respect them. So, it’s not me making decisions for you, it’s you. But there’s a question on this thing is today in your current health, think of this, all of you, my main goal is to live as long as possible, no matter what. Think of a continuum, and at the end of that is my main goal is to focus on quality of life and being comfortable, and then in the middle, it’s equally important.
So, right now, because of my age, I would probably say equally important. But if you’re 45, you’re going to say, I want to live as healthy and as long as possible. But think of yourself, this document has both of these questions in it, at the end of life, where do you want to be? I put myself, my main goal is to focus on quality of life and being comfortable if I was really at the end of my life. But I could be, there are four little dots on this continuum on this document, so you might be in a different place. It’s a great discussion document in that way, and there’s a whole lot of questions about end of life, but this isn’t an end-of-life document, it’s about a document that says things that you might be faced with or your spouse or your partner or your parent that they never thought about before. Do you want blood transfusions? Do you want to be put on a ventilator? Do you want to have life support or not? And a lot of people don’t, and they need to talk about these things.
And the other thing is burial. When my mom died, she and I had had a conversation about she wanted to be cremated like her mother was. My father was buried in a traditional burial. And my brothers were shocked that I chose cremation for my mom. My mom really chose that herself, but it was one of those discussions that I didn’t share with my brothers before the end of her life. And I should have. And I think if I had this document then, as a discussion piece, we could have had a better communication. It wasn’t poor, but they were just surprised that that happened and that she didn’t have the same burial as dad. So, I think that this is a great document for you all to use as a resource and a template for discussions. It’s just like, let’s just talk about those things because I don’t want it to be my decision, I want if I have to make a decision for you, it’s your values and your goals of what you want.
Casey Weade: Well, this has been fantastic, Linda, and there’s so much deeper that we could go, but hey, if you would like to go deeper into this element for not just yourself, but more importantly, your loved ones, I think we have a great resource for you today. We partnered up with Linda. Linda, sent us over a box of her book, The Empowered Caregiver: Practical Advice and Emotional Support for Adult Children of Aging Parents. This would be the best starting place, in my opinion, for this conversation within your family. All you have to do to get a free copy of this book is write an honest rating or review for the podcast or write an honest rating and review for the podcast on iTunes and then shoot us an email at [email protected] with your iTunes username, and we will send this book out to you at no cost as long as we have them. So, Linda, thank you so much for joining us. This has been a wonderful conversation. I’m so glad we did it.
Linda Fodrini-Johnson: Thank you. Thank you for having me.