From Alzheimer’s Caregiver to Advocate: Jennifer Fink’s Hard-Won Lessons | EP038

Hello everyone. It's a pleasure to be here with you today, and I'm so excited to welcome Jennifer Fink, who is a caregiver for Alzheimer's, or has been a caregiver for Alzheimer's, and she has a wonderful website, which we are going to talk about a little bit later in the show. But I'd like to say good morning to you, Jennifer,

hello. Thanks for having me My pleasure.

And if there's any particular way you'd like to introduce yourself before we get started, and anything you'd like our audience to know,

well, you can call me Jen. That's always easier. I was the caregiver, the person responsible for my mom in the last three years of her life, but she had Alzheimer's for a very long time. When you look backwards, it's easy to go, oh yeah, that was probably the beginnings, which went back from or mid 1996 and she died at the beginning of the pandemic in 2020 so that's a long time,

a very long time, and I'm so glad you started there, because I think that's one of the key issues that comes up right away for people who are caring for someone with Alzheimer's, what is going on here? And by that, I mean there are so many terms to process, because it isn't automatically Alzheimer's if someone can't remember something, and very often it takes a while to diagnose because there isn't an easy way to do that. So could, could you start by helping us to understand some terms, for example, cognitive impairment. What's that?

That's just basically, there's you can have mild cognitive impairment. I actually have a past guest and a kind of an internet friend, for lack of a better term, we've we're friends, but we've never met in person, even though she's at the other end of the state for with from me, her husband has mild cognitive impairment, which obviously impairs your thinking and memory skills. He is one of the luckier ones, a third of people with MCI may actually get better. So it's probably caused from a drug or another illness or something going on that they can fix. A third of people with MCI just kind of stay where they're at. You know, they're they're impaired, but they don't need, like the 24/7 care that somebody in advanced Alzheimer's needs, and the other unfortunate third can move into Alzheimer's disease. So he's had it for quite a while, and has is basically pretty stable. So we're rooting for him to stay in that 30% that's that doesn't progress. A lot of people don't understand that there's actually a difference between the term dementia and Alzheimer's. Alzheimer's is actually a disease that causes dementia. Dementia is more like a symptom, and it's pretty broad in terms of memory issues, cognitive issues, Alzheimer's disease usually starts with memory issues, but it progresses into, you know, the not being able to feed yourself, do the necessary activities to maintain daily living. We'll we'll keep it there, because we don't want to get too gruesome on the daily activities spectrum, there's a lot of diseases that cause dementia. My maternal grandmother had vascular dementia, which was in her most people get vascular dementia from a stroke. She actually had a brain aneurysm that leaked for three months before the doctors finally understood that a woman who had never had headaches. Who'd had a headache for three months nonstop probably had something else going on, so that wasn't good. And my maternal great grandmother had dementia, but I don't know what flavor, as I like to put it, because she died before I was born. Let's see. There's frontal temporal dementia, which can present with personality changes that one can actually be pretty nasty because your loved one turns into a different person. And it's not generally a nicer person. It's like all their filters and their social graces, not only do they go away, it just seems like they've been blown up and they just they let their feelings rip, which extremely difficult on caregivers. There's Lewy body, which I don't know a lot about. It's pretty, pretty rare in the dementia disease realm, Alzheimer's is the leading cause of dementia. It is the number five cause of death nationwide. Here in California, we like to do things a little bit bigger and better. It is number two. It beats out breast and prostate cancer combined. And I think we like battle it out with heart disease. I don't, I don't know,

yeah, often they do go hand in hand. Excuse me. Thanks for. Are going over that array. It's really difficult, I think, sometimes, for people to understand that this might be a progression or it might stop somewhere, and it's a good thing to be aware of. But unfortunately, doctors don't have any kind of petri dish or stick test that can say, Okay, now it's this, and I remember going through that when I was caring for a loved one. Can't call it yet, no, I'm not sure. A lot of those kinds of answers are very frustrating to a caregiver, because you don't know how much you're going to have to plan for or intervene. But it is, it is a very big job if it, if it goes all the way to Alzheimer's, because your loved one, if they live long enough, and I know your mom, you said, lived quite a long time with it, will require all sorts of personal care, as you mentioned, for for activities of daily life. Now, one of the things I discovered in my journey as a caregiver was that not every specialist or professional is best equipped to diagnose this condition or any of these. So one thing I'm wondering is, Could an MRI help someone

to make that I think it's a PET scan that they use for diagnosis. There's a PET scan and a spinal tap or a lumbar puncture. There is a blood test out there. It has not been widely adopted yet. I am not sure why. It's something the Alzheimer's Association, which I joke that I'm a professional volunteer for, is has pushed it is something a general physician could use. You know, it's best if you are starting to think, gosh, you know, man, I'm having a lot of, as I referred to my mom's Daffy moments. I'm starting to get concerned about my cognitive health, and then get, you know, you might be screened before you have any symptoms, which can be good, because there are lifestyle choices we can and should always be doing, especially for people like me who are at a higher risk because of the family history. My dad's side of the family has diabetes, which is also a risk for Alzheimer's. So I gotta watch all the things. There is debate on whether or not screening for a disease you may or may not have as good, you know, obviously, if you get screened and they're like, Yeah, you got markers for Alzheimer's, you know, understandably, some of us might spiral into a depression and not do the things we need to do, and that's obviously bad. And there's always the, you know, the problem of false positives, false negatives. So I don't know, I don't know. I don't know how I feel about that one, knowing that there are things we can and should do to prevent a lot of chronic illnesses, dementia causing diseases, cancers, heart disease, all the ugly things to me, that's what I do every day. I actually have an almost 11 year old golden retriever. I focus on her mental health as well her cognitive just because it's part of my it's part of my everyday nature at this point. So I'm sure you can guess, maybe you've hurt red, but I get all kinds of push notifications about, you know, what neurologists wouldn't eat, or what, you know, it's like, all these crazy push notifications for articles. But the lifestyle choices are pretty simple. Gotta eat right? Plant based is better. Limit your red meat, your saturated fats. You know, all the things we love to hear exercise. You gotta get your heart going. Weight training, especially for menopausal women, is really important. It helps you maintain your balance, so you don't fall and break a bone, that that's what took out. My mom, she fell and broke her leg, and two and a half weeks later, was gone. You know, it's we hear about that a lot. It's not uncommon. So obviously, as we age, we want to make sure we keep our balance. We you know, especially as women, want to keep our bones strong, which obviously helps with the balance. We want to regulate our stress, you know, we want to keep social. We want to keep learning new things, and we want to make sure that we get good quality sleep. You know, all the simple things,

all the usual good things that we all should be doing anyway, exactly. My doctor likes to put it to me when I when I'm worried about something. You know, there's a concern. I've been hearing a lot lately, and I did experience some of this when I was a caregiver. People are saying to me, my loved one's doctor is brushing me off, maybe even laughing at my concerns. What can I say to be taken seriously? Do you have any advice in the communications dimension for caregivers, how to talk to those professionals that you are now the intermediary for

what do you that is? That is a big challenge. Let me ask you a quick, quick couple of questions. Was, was your loved one presenting fairly normal in. They were at the doctor's office.

There were times yes, then there were times no. So it was an intermittent thing,

yeah, okay, and was the doctor older? Yes, okay, I've have, I have past guests on my podcast that were to our doctors, one that is a GP, and let's see, does palliative care, hospice care, and teaches at med school and wrote a book, I don't know where he finds the time, and the other one was a geriatrician, so person that takes care of us older folks. And they were very forthright when I asked the question, how much dementia training do doctors get? And the answer was basically a big fat zero. So if you are unfortunate enough to have a doctor who sometimes older, doctors kind of brush off concerns, because there is a natural slowing of our brains as we age. You know, if we have memory loss that's affecting daily living, that's a concern. If you forgot why you walked into the kitchen or got up from the couch and went into the other room, and you get in the other room, you're like, What the hell did I come in here for? That's probably because you're not paying attention. So if you've got a loved one that is doing these things, or we have to keep in mind that, unfortunately, the way our healthcare system works, doctors only get about five minutes, and if we need 10, we throw off their whole daily schedule. So what I recommend people do is keep a daily journal of things that your loved ones doing. Time, dates, not Well, yeah, dates, times, you know what they're doing. It's not unusual for somebody to get really confused and agitated in the afternoons. They're generally more tired. They've had a lot of stimulation, or maybe they haven't had enough. You know, keeping a journal notebook, whatever will help you kind of pinpoint times and, you know, triggers that might be activating like, their less desirable behavior, and if they've got like, if you can record video like, for us, old school people, videotape whatever you call it on your phone, Record them, maybe how they're walking, maybe a conversation, air quotes on conversation, anything that you could present to the doctor at the appointment, or preferably send it to them before. I don't know if you can send them videos, but you could send them a message that says, you know, here's why I'm concerned about their cognitive you know, well being, because here's some dates and times, and here's the things they did and stuff they can see a list, and maybe some, you know, like a video of you having a difficult conversation because they're not able to follow along. That gives them a lot more things to look at for a diagnosis, and a lot makes it a lot less easy to dismiss. Trying to make sure my grammar is correct,

you're doing fine. The I think that that's a great idea to submit some video evidence if you have it, or at least a list of particular behaviors. But I have heard, in some some unusual circumstances, doctors literally laughing off the concern and laughing when, when people brought it up. So this really worries me. And then I know in one case, I did have an issue where my carry was clinging to the professional they had because they were kind of poo pooing the possibility of of Alzheimer's or dementia or anything at that point, and they didn't want to switch caregivers. And I felt my being disrespected wasn't a good sign for the future of how this relationship was going to work out in in any of its various linkages. So if your if your loved one wouldn't agree to change doctors, because you really you can't make that happen at a certain point, or at least in the beginning of the onset, for example, of these conditions, because your loved one still has rights to choose their own practitioners. And that makes sense to me in an intellectual way. But then there are times when you have someone who's just really not helping you. What can you do about that?

Well, I would basically, very politely and very strenuously demand a second opinion. I mean, if they're laughing at you, my first instinct is to, like, leave the loved one with them and they can deal with but obviously that would probably not be a wise choice. That would be my temptation, but I would definitely say I don't feel like you're taking my concerns seriously, so I would like a second opinion, and then I would not let up on that. I think that's about the only question. Course of action you have, but this is a good reason to make sure that you have power of attorney for their finances and their health care, because at some point you're going to have to make decisions. And if that hasn't been given to you, you know, I never had an issue with it. I did have POA from my mom for health care, and nobody ever questioned it. They weren't always helpful, but they didn't ever give me trouble over being in charge and but there's a lot of people I've talked to who have taken their spouse to the doctor for a regular checkup or whatever, and understandably, they like to separate spouses so that they can screen for potential physical abuse or even mental abuse. And if the spouse is in there answering questions for the other one and is like hovering, and you know that can be seen as as like, controlling or abusive behavior, when all you're trying to do is make sure the doctors got the right information. So, you know, depending on the doctor's experiences, maybe they've dealt with people who have more, you know, abuse in their background and less cognitive problems, and that's where their brain goes. Because, you know, naturally, that's, you know, pretty typical. We make decisions and and think things through based on our own experiences. So yeah, definitely get power of attorney and get a second opinion, because they should not be laughing at you, right?

And, you know, unfortunately there, because people can showcase, as he said, You look like the person who's making things up, not, not the patient. So, so that can be very awkward, and I guess trying to stay rational yourself, if someone is laughing at you, it's not always an easy thing to say, but, but the more you can hold on to your feelings or your responses there, I think you're in you're in better shape. And I guess at a certain point, if your loved one won't agree to a treatment or or a decision that that needs to be made, you have only so much control. And I think caregivers often feel just so frustrated by that kind of a moment when all the best things that you're trying to do are not going to work because your patient, your carry won't go along with it. So getting over to the caregiver side of things, the strategies that we could give people, because that's one place we need to cope, but we also 24/7 need to be thinking about ourselves a little bit more. And I was, I was listening to, I think it was your April 15 episode, and you had a great discussion about self care, and I love the idea that you are enough. That was such a wonderful concept, because that's the thing we're likely to forget or not feel on certain days when things are not going our way, or when we're exhausted. So sometimes the people around us don't really even realize that we're working. Some people think, well, it's an act of love, so it's not work. And yet, I wonder what your top strategies are for work life balance when you're caring for a loved one with Alzheimer's. What kinds of things do you recommend, or did you do?

Well, the first thing that I did my when my dad was on hospice, his best friend made an offhand comment about my mom coming to live with me, and I thought nobody's ever had that conversation with me. That is not going to work. My mom and I wouldn't have been good housemates had she not had Alzheimer's. Alzheimer's just ramped up all the all of the challenges we would have had. You know, we were too similar and too different, and I don't know my experiences as two adult women living together is not always great. I had to make the difficult decision to move my mom to memory care because that was what was best for the entire family, my household, my mom, my sister's family, and just everybody in general. So you have to not get so wrapped up in doing everything for them, they're not going to get better, which is tragic, but it's, you know, they're not going to get well, you could be 100% perfect caregiver. I know caregivers that have done just, you know, the most phenomenal job kind of make me feel a little shamed that it's like, well, I maybe I should have done more, and their loved ones are still here. And sometimes I think, is that really the best or, you know, obviously everybody's situation is different, so I'm not judging their situation, but you have to take everybody into consideration. And the one thing that we seem to forget is that when we don't take care of ourself, we're putting our. Loved one at risk, because what happens if something happens to you? This is especially true for spouses that are caring for their spouse that has Alzheimer's or some other form of dementia, because they aren't going to get better, it's just going to continue to progress and get worse. If you're not taking care of yourself, you're not taking time out, you're not bringing in help, which I have strategy for that. You know, you're at risk of becoming hospitalized, and then what the heck are you doing with your loved one? Do you have a backup plan for that? Most people don't. We didn't. We didn't ever talk about what would happen if my dad died first and he had had a kidney transplant, no nine so, you know, it was like, This is why I preach have these conversations. Talk about, you know, where, where you how you want to live the last quarter of your life, last 1015, 20 years of your life. You know, most people are just Well, I want to live in my home. Great. Is it aging in place? Ready? Probably not. Can we make it safe to age in place? Well, maybe what happens if we can't and the stairs become a problem? Can we renovate the home to to do that? Have these conversations if you need care, how do you want that care to be presented to you? When you have these conversations early, it takes away a lot of the guilt making, you know, like my mom, the day before we moved her to memory care, was leaning on the kitchen counter looking out the window to the backyard, and there was a lot of maintenance that needed to be done on the house. So that was the excuse we were using to move her. And she goes, Well, you're not selling my house. I'm like, Oh no, no, no, we're not. We're not selling your house, which was true. And in a brief moment of clarity, she whipped around, looked at me, you know that mom look. She goes, You're not renting it out either. And I thought, oh my god, yes, we are, because you can't live by yourself. And 24/7 caregivers, which we had while my dad was on hospice, was extremely expensive, and my mom was 20 miles away from my house, further from my sister. I was just like, it was awful. She did actually end up with friends and memory care. It was the best decision, but it was very difficult. So we have to keep in mind that there's not just one person that needs care. You don't want to be in a position where you end up needing care while you're trying to take care of somebody else. So you need to, I'm going to, I'll throw out how I how I tell caregivers how they should go about getting help in home care is very difficult to find with huge shortage of that. It's also very expensive this week. So this is the first week of may actually have an episode on an innovative approach to in home care. It is a company called care Yaya, so it's y a, y a, they use like med school college students going into the medical or related professions, and they get them, you know, you know, they're younger, they're prior, they're enthusiastic, they're cheaper. It's, it's a win, win for everybody, because we're also sort of training the new generation of medical providers that this is what aging with some form of dementia looks like, so first check into them, because that's awesome. When you know there's something going on with your loved one, or you are just 100% convinced, despite the doctor laughing at you, that still irritates me to hear that. Make a list of all of the tasks you need to do today. What's on your you know? What? What do you need to do? You know, gotta have meals. Probably need to back him up after the gold retriever if you're in my house, and then do that every day for a week. So now, you know, this is the stuff that's got, like, this is a must do responsibilities. Tack on anything that's a monthly regular, you know, hair appointment, nail appointments, doctor's appointments, and then tack on the random stuff, because hopefully we don't have doctor's appointments every month. And then make a second list of everybody. You know, they do not have to be family and they do not have to be local, and this is the key to this whole project. Next to the person's name, write down what you think they'd be best at. What task would Jen be the best to do like, please do not call me and say, Could you like, you know, call the insurance companies and blah, blah, blah. I'm like, No, I don't want to do that. I hate that. I hate that. It stresses me out so bad I hate to hold me like, No, I don't want to do Oh, but you need somebody come walk your dog, you you know your loved one. Most people with some form of dementia love sweets. I love to bake. But there's only one of me in my household that likes to eat sweets, and I certainly don't need a week of baked goods every week to eat myself. So I would love to bring you some cookies that I can. Uh, save a few for me and bring some to you. Sit with your loved one. I can drive them places. Please don't ask me to call insurance company or the banks or any of those bureaucracies. I just I can't cope with that, and the key to that is so now, when I come say, oh my gosh, I'm so sorry to hear about your mom. Is there anything I can do to help you are not going to respond with, well, thanks, yeah, yeah, we got it. It's okay. Which it's not, it's not going to be okay. You can be like, ah, Jen, you know, what would be really great. Could you, like, bring some baked goods a couple times a month and maybe sit with mom, you know, while I run to the bank or grocery store or whatever. Five other 1000 things we always seem to need to do, and you're not overburdening me. You're not asking me to do something that I'm not comfortable with. And it's easy. It's easy to say yes to things you already kind of want to do. And you know, you extrapolate that across your entire list, and the next thing you know, you've got a lot of help that is probably free, you know, you might have to do a little reciprocal stuff here and there, but that's, that's life, and that's how our society should work. Yeah, I love

I think that that that's a great point, because going back to my earlier point about it really is work, and we should look at it that way. You would match the job to the person if you were running an organization, and we should not look at it any differently from that. So I'm glad that you raised that. I did want it to go back to something you said earlier about what happens if you can't be a caregiver anymore, and point out that the three leading causes of death among elder caregivers, particularly who are at a 70% greater risk of dying before their spouse are heart disease, diabetes and hypertension, and having acquired a couple of those myself in the process of caregiving, I will tell you that this is not where you want to be in your 70s. You don't want to be coping with these things. So if you can get that help and request it and make that your priority, even more so than doing the other things, I think that's important. I was a caregiver during COVID, and I have to tell you, when you said nail appointment, I was thinking to myself, I couldn't even think of a nail appointment, and yeah, I let all those things go because that, first of all, there weren't stores open to go to, and second, I don't know when I would have spared the time. So that was a lot of lessons that that I had to learn there too. So we're coming pretty close to the end of our interview today, and I want to say what a pleasure it has been, and also to recommend your podcast to people. And so if you would like to now explain to us where we can find you. I know there's a website involved, so if you let us know what your links, a couple of your links are, I am sure listeners would want to follow up with you.

Well, I'm on LinkedIn under my name Jennifer Fink. The my instagram handle is Alzheimer's podcast. I probably should change that, because that's really kind of a pain in the rump to spell. I get the predictive text it automatically fills. I don't know what that says about what I'm working on. My website is fading memories, podcast.com, I went to get the fading memories Url domain, and I looked at the price, and I went, I must be hungry. Let me go have some lunch. And I came back from lunch. I'm like, I am not spending $36,000 for that. So, yes, that's why it's horrifically long. And then obviously, the show is called fading memories. We have episodes every single Tuesday, and I have done that for seven years. I'm I should be a lot more tired, but I also do a lot of, like I said earlier, I'm a professional volunteer with the Alzheimer's Association. One of the things that I do, I do facilitate a support group. My support group is amazing. They don't need me, but they think they do, but they really are so supportive of each other. And I also do a lot of community education. So if somebody's got a question they want to reach out, my support group is virtual, so you can, you know, join. I've got people, some people that pop in when they can, that are across the country, but I have people from every end of California, so that's kind of nice. And like I said, they're just fantastic group. And you can just, you can find me at all those places.

Those are great links. Jen and I want to express my personal thanks to you for giving so much back. A lot of people go down this road and say, I don't want to hear about this again, and certainly that's understandable, but you, Jen, have put your life in. Two for seven years, have put your life into making this information accessible so that other caregivers aren't going to make, I won't say the mistakes, but make the decisions that aren't going to be as helpful to them. So I appreciate you, and I'm so glad that you were here today. Thanks again for being my guest. Thank you. Bye.