The Caring Generation® What to Do When Elderly Parents Refuse Help

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The Caring Generation® – Episode 23 January 22, 2020 On this caregiving radio program Pamela D. Wilson, caregiving expert, talks about What to Do When Elderly Parents Refuse Help that results in caregiver role stress and feeling out of control. Special Guest Katherine Hackett from the Cognitive Neuropsychology Lab at Temple University shares research and clinical studies How to Keep Your Mind Sharp at Any Age.

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The Caring Generation® Radio Show Transcript What to Do When Elderly Parents Refuse Help

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00:04 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is that it doesn’t have to be that way. The Caring Generation with host Pamela D. Wilson is here to focus on the conversation of caring. You’re not alone, in fact you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.

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00:47 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host, you’re listening to The Caring Generation radio program coming to you live from the BBM Global Network, Channel 100, and TuneIn radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves, loved ones. Our topic for this evening’s show is Why Elderly Parents Refuse Care and everything in between. We’re going to tie this together with humor and laughter that are essential to being a caregiver. Take The Caring Generation with you wherever you go, on Apple podcasts, Google podcasts, Pandora, IHeart radio, Spotify, Spreaker, Stitcher, Sound Cloud, Castbox and more.

01:33 Pamela D. Wilson: Share the program with your elderly parents and family members. You can download a podcast app to their cell phones and show them how to listen. It’s the perfect way to begin the conversations about caregiving by letting me do the talking for you. This week, we’ll be talking about why elderly parents refuse care. I’ll share suggestions to help you manage through these conversations and interactions. The idea of refusals might be easier to understand if we look at ourselves and answer the questions, why do we dislike the idea of change? Why do we ignore the suggestions of others? Why don’t we take better care of ourselves? What are the things we know we should be doing but we don’t? We all refuse to do things that might be good for us.

02:24 Pamela D. Wilson: Our elderly parents who refuse care, they are no different, especially when their physical or mental abilities change. Talking about mental abilities is another important subject for this evening, how to keep our minds sharp as we age. Special guest Katherine Hackett from the cognitive neuropsychology lab at Temple University, she will share research about staying sharp and also share information about clinical studies. If you live in Philadelphia, Pennsylvania and are interested in participating, Temple University is recruiting for participants.

03:03 Pamela D. Wilson: If you don’t know what a clinical study, or a clinical trial is, it’s a program that allows consumers like you to volunteer, to test treatments or health interventions to prevent, detect, treat or manage a disease, or medical condition. In the case of the clinical studies at the Temple cognitive neuropsychology lab, these studies relate to everyday function, memory loss, traumatic brain injuries, aphasia, heart surgery and more. You can find more information on the Temple website. Go to https://sites.temple.edu/cogneuropsylab/current-projects/, and that is spelled c-o-g-n-e-u-r-o-p-s-y-l-a-b /current-projects. Katherine Hackett from Temple will be sharing more information on this subject, in our second segment.

04:05 Pamela D. Wilson: Let’s talk about six reasons why elderly parents refuse care. The first is apathy. Really just not caring. It’s a lack of interest or emotions and not being motivated to do anything, to take any action. Apathy and a lack of motivation, result from a medical diagnosis, taking certain medications, and life long habits. Apathy can happen to any one of us. Let’s talk about a medical diagnosis as a reason for why elderly parents refuse care. Dementia, Alzheimer’s disease, stroke, Parkinson’s, or Huntington’s disease, or schizophrenia, are health concerns that result in thinking difficulties, apathy and with some diseases difficulty moving around.

04:52 Pamela D. Wilson: Research confirms that apathy is an ignored condition, a study by the University of Exeter, confirmed that 45% of persons diagnosed with dementia, suffer from apathy. Elderly parents when they are diagnosed with any of these diseases they may refuse to participate in activities of daily living. For example, taking medications, eating or bathing. Untreated depression is another cause of apathy. In this situation, it’s extremely important to work with a physician who is willing to work with you, because various types of medications called SSRIs that treat for depression can result in, guess what, apathy.

05:30 Pamela D. Wilson: These are medications like Sertraline known as Zoloft, Escitalopram known as Lexapro, Fluoxetine known as Prozac, Paroxetine known as Paxil, Amitriptyline known as Elavil and others. That was a tongue-twister. The last thing we want as caregivers is to make an already apathetic situation worse. Be aware that medications to treat depression in elderly parents who refuse care, they can result in a worsening situation. You may notice apathetic symptoms like being unable to initiate activity, poor persistence, a lack of interest, and no emotions.

06:00 Pamela D. Wilson: If an elderly parent is taking any of these medications, closely monitor their behavior and mood. If any medication causes a change, report this to the doctor so that another medication can be reviewed and more important about medications is on a past Caring Generation show, it’s called Medication Issues in the Elderly. You can find it on my website. Other reasons for apathy are just life-long habits. If a parent has had a pattern of blaming others for things that go wrong in life, mom or dad may feel helpless or hopeless.

06:38 Pamela D. Wilson: People with those types of habits, they rarely take action to change or improve a situation. Complaining is the activity of choice. Mood disorders like bipolar disorder or anxiety disorders, like PTSD, panic attacks, obsessive compulsive disorders, they can also result in a lack of energy, interest and a list of other concerns, like worry and difficulty concentrating. It’s important to rule out medical causes for apathy and depression, so that we as caregivers, understand that our elderly parent is not being purposefully negative or uncooperative.

07:18 Pamela D. Wilson: If the cause of apathy or depression is a medical diagnosis we can become more educated on how to work with elderly parents in these situations. Doubt and uncertainty are other reasons why elderly parents refuse care. It’s easy to say no when we are unconvinced of why we should do something that others view as positive. The second reason why elderly parents refuse care is a lack of motivation. Symptoms of poor motivation include being tired, exhausted, difficulty concentrating, and a lack of interest in things, people or activities. A lack of motivation is closely tied to being apathetic. Exhausted caregivers can become apathetic.

07:58 Pamela D. Wilson: We’ll talk more about why elderly parents refuse care, in the second half of this show. Up after this break Katherine Hackett is going to join us to share information about keeping our brains sharp, plus all of the clinical studies going on at Temple University in Philadelphia, Pennsylvania, where you can participate if you live locally, you can go on to their website, we’ll share more information about how to get there. Katherine is a Georgetown University graduate with a major in Psychology and a minor in Mathematics. She’s pursuing research in the field of Alzheimer’s disease and neuropsychology. She works at the cognitive neuropsychology lab at Temple University in the Clinical Psychology program where she is completing her PhD that focuses on cognitive aging.

08:46 Pamela D. Wilson: Share The Caring Generation with friends and family members, these and all of the past programs are downloadable as podcasts from my website PamelaDWilson.com. This is Pamela D. Wilson on The Caring Generation, you’re with me live on the BBM Global Network Channel 100, and TuneIn radio. Stay with me, we’ll be right back.

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11:23 Pamela D. Wilson: This is Pamela D. Wilson caregiving expert, I’m your host. You’re listening to The Caring Generation, coming to you live from the BBM Global Network, Channel 100 and TuneIn radio. We’re back with Katherine Hackett from the cognitive neuropsychology lab at Temple University. Katherine, thanks for joining us.

11:40 Katherine Hackett: Thanks so much for having me Pamela.

11:43 Pamela D. Wilson: So a lot of people are concerned about the diagnosis of Alzheimer’s or dementia. Cognitive reserve is a protective measure against decline, what is it and how do we develop cognitive reserve?

11:57 Katherine Hackett: Yes, so cognitive reserve is a way of thinking of the resources that you have to engage in cognitive or brain activities, particularly when you’re facing obstacles. So, if we use the analogy of fuel for an engine with the engine being like our brains, to help the engine perform at it’s best, you can build a gas reserve or add extra fuel which corresponds to strengthening the health of a brain circuit like memory. You can also diversify the fuel sources, to run on solar energy or wind instead. Which is similar to what we do when we recruit a different brain system, like visual imagery to help remember someone’s name.

12:27 Katherine Hackett: So the more cognitive reserve one has the greater ability one has to overcome brain pathology, and this process is thought to occur through greater brain efficiency, greater capacity to perform, and a greater ability to compensate or improvise using additional brain regions.

12:55 Katherine Hackett: And Dr. Yaakov Stern from Columbia University has contributed significantly to the definition and the research of cognitive reserve. And interestingly, the origination of this concept is tied to a study from the 1980s, when researchers described a group of people who at autopsy had brain changes that were consistent with advanced Alzheimer’s disease, but who actually had no apparent symptoms while they were alive. And so this was believed to be due to a large amount of cognitive reserve, which actually helped to offset that damage.

13:27 Katherine Hackett: And so a lot of things are associated with building cognitive reserve. So if we’re thinking about social activities because that’s something that you mentioned might be of interest to your listeners, social activities may help to build cognitive reserve in several ways: Social interactions are complex activities and so, just like exercise, they strengthen your brain circuits and boost brain activity to help the brain maintain its connection. Social activities also build new types of resources like one’s mood. When our mood is positive, we’re clear thinkers and we also experience positive effects on the entire body, such as boosting the immune system. And finally, social activities can help diversify resources through practical support. For instance, our friends can help us do activities and remember things like reminding us not to forget our medication before we eat which can help individuals function independently for longer, which is ultimately key to delaying dementia. So that was a little bit of a mouthful…

14:28 Pamela D. Wilson: That’s okay, that’s okay. It makes sense to me. Obviously, the more we have social activities that support our brain, the more that we can continue to do. Research confirms that there are some lifestyle interventions that can modify risk factors for dementia. What does the research say about that?

14:46 Katherine Hackett: That’s a really great question. And that really touches on a growing field of research, that’s aiming to clarify what factors reduce risk, or delay the onset of dementia by targeting what are called modifiable risk factors, particularly before symptoms of cognitive decline first appear. So the important thing to note is that there’s no silver bullet that can definitively prevent or reverse dementia. At this point many of the completed studies are correlational and not causal, or they look at only one intervention at a time. However, there are studies including the 2015 Finger study which stands for the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability, and this study has compared a combination of lifestyle interventions in at-risk older adults.

15:38 Katherine Hackett: And they compared that group to a controlled group who actually received regular health advice. So this study found that the group who received a combination of nutritional guidance, exercise, cognitive training, social simulation, and management of vascular risk factors saw improvements in overall cognition and specific cognitive domains as compared to that control group. And they saw beneficial effects on those general cognitive functioning and cognitive domains that are highly relevant for completing everyday activities such as executive functioning, and processing speed.

16:15 Katherine Hackett: So it’s important that we continue to rigorously study these modifiable risk factors, to determine what works best for who and spread the word so that more people are informed to act earlier. And the main tenets of this approach are that it’s multi-dimensional, personalized and that we act early.

16:34 Pamela D. Wilson: And I think another modifiable factor is social network support. So talk about that and how that affects risk levels of being diagnosed with dementia or Alzheimer’s.

16:44 Katherine Hackett: That’s right, so we know that strong social networks help reduce risk for dementia. One study published in 2000 by Laura Fratiglioni and colleagues showed that on average, individuals living alone, and those without close social ties had an increased risk for developing dementia. And compared with married people, single people and those living alone had about two times the risk. In general, they found that a poor social network increases risk for dementia by 60%. So what this means is that those people with social risk factors such as those living alone can seek to make up for this by beefing up their social activity in other ways, like more regular contact with friends or signing up for group activities or classes.

17:29 Katherine Hackett: So it’s important to note that these studies are based on group statistics. Which means that the results do not necessarily apply to every individual in the group. There may also be an interaction between personality variables, like introversion and the benefits of social interaction. So taking a precision medicine approach, we might wonder if social interaction is most beneficial to people who are extroverts. Whereas it might be taxing and ultimately resource-depleting in those who are introverts.

17:55 Katherine Hackett: So this goes back to my point about personalization. It’s also important to note that the mechanism for the protective effects of social activity remain largely unknown, and are likely multi-dimensional and dynamic. So we have biological components for boosting the immune system. We’ve got a mood component by reducing depression. A cognitive component through just increased brain stimulation and then those practical components like medication reminders, that I mentioned. And so improvement at each level likely interacts with the other levels.

18:27 Pamela D. Wilson: Perfect, Katherine we are going to head out to a break. We’ll continue our conversation with Katherine Hackett of the cognitive neuropsychology lab at Temple University after this break. I’m Pamela D. Wilson, your host, you’re listening live on the BBM Global Network, Channel 100, and TuneIn radio. This is The Caring Generation. We’ll be right back.

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21:07 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM Global Network Channel 100, and TuneIn radio. Let’s continue our conversation with Katherine Hackett of the cognitive neuropsychology lab at Temple University. Katherine, before the break, we were talking about the importance of social activity and research studies relate activity with a decreased risk of dementia. What types of activities have the greatest effect?

21:40 Katherine Hackett: Yes, so I can talk about one particular study from 2001, by Scarmeas and colleagues from Columbia University in New York, and this study asked whether increased leisure activities are associated with decreased risk of dementia. And this study followed about 1700 individuals for seven years. They measured baseline leisure activities, and they recorded who developed dementia at the end of the study period. They recorded participation in 13 total leisure activities. So some of these included knitting, music, engaging in hobbies, walking for pleasure, or visiting friends, physical conditioning, reading magazines and things like that.

22:22 Katherine Hackett: They found that people with high levels of leisure activity had 38% less risk of developing dementia and this was even after controlling for other factors such as education, occupation, cognition, health limitations, depression and other factors that reduce the risk for dementia. So among these important leisure activities, they found that reading, visiting friends and relatives, going to the movies, or to the restaurant, and walking for pleasure were most strongly associated with reduced risk in this group of people. And importantly they found a cumulative effect. So the more leisure activity someone engaged in, the better off they were. So this tells us that intellectual, physical and social leisure activities were all significant in reducing risk for dementia.

23:14 Katherine Hackett: I do want to stress that this was an observational study. So we can’t make claims about causality. People with better cognition, may just be better able to do these activities in the first place, and this really points to the reason why we need more randomized controlled trials to really test causality.

23:32 Pamela D. Wilson: Well and it also tells us that we should play and have a lot of fun in our lives so that we have a decreased risk of dementia. So let’s talk more about the research. So how can people who have dementia — because there are different levels of what they can do — how can they remain mentally, physically, and socially active?

23:51 Katherine Hackett: Right. So once someone is diagnosed with dementia, we’re no longer talking about dementia prevention or risk reduction in the ways that we’ve discussed thus far. So at that point it really becomes about staying active to improve your quality of life, which is very important and provide opportunities for meaningful interactions. And I think the major takeaway from research studies on multi-modal interventions for risk reduction, and some of these applies to people with dementia, as well. So these major takeaways are firstly do what you can. So do as much as you can. But don’t stress about the activities that are simply not possible for you to engage in.

24:30 Katherine Hackett: The second point is, consult with your primary doctor so that activities or interventions can be tailored to your most pressing health needs. The third is that anyone can involve friends in your plans to exercise, improve your diet, whatever that intervention might be. Involving friends will help you increase socialization which as we discussed has those protective effects, and it may also introduce some social pressure and accountability that can ultimately be motivating. And finally, this goes for everyone, make what you do personal and do what you enjoy. Don’t waste time with cognitive training exercises that you don’t enjoy.

25:08 Katherine Hackett: So for example, if you don’t like Sudoku, don’t do it. Do something that’s challenging. But that you also like doing whether that’s learning a new language, playing music, reading a book, etcetera. And another question we’re studying in our lab is related to the transfer of cognitive training at that prevention stage, at that risk reduction. So can we design activities and interventions that actually transfer from the training settings to real life? This is something that’s very hard to do, but it’s something that we’re working on.

25:40 Pamela D. Wilson: So we’ve got a couple of minutes left. I know that you are recruiting for a clinical study using Smart Prompting, and so talk about that briefly and then talk about how people can contact you to participate in all of these clinical studies?

25:53 Katherine Hackett: Sure, so our lab at Temple is interested in understanding really subtle changes in everyday activities like preparing meals that happen in healthy, older adults, and in others who are experiencing cognitive decline. So we believe that changing patterns in these everyday tasks represent a marker for cognitive decline and may actually be used for earlier detection and more meaningful intervention.

25:53 Katherine Hackett: So one of our studies called the Smart Prompt study is aimed at improving those everyday activities in people with mild dementia, and our main goal is to reduce the burden that their caregivers experience while these caregivers are helping them complete these everyday tasks.

26:34 Katherine Hackett: So the goal is really to free up the caregiver’s time so that they’re able to indulge in more rewarding interactions with that person. So this study involves participants using a smart phone application, that we developed, on their own personal phones, which serves to remind them to complete tasks in the home. And this app was designed specifically to be user-friendly for older adults with cognitive impairment and walks them through a series of instructional steps. And we’ve completed pilot testing for this app in our lab, and it’s shown really promising initial results, and it’s received some great feedback from caregivers. So individuals over 65 who have mild cognitive impairment or mild dementia, who also own a smartphone are eligible to participate in this particular study.

27:21 Pamela D. Wilson: And do they go to your website? Do they call you? What do they do to get to you Katherine?

27:26 Katherine Hackett: Yes, so there’s a range of things that one can do but the easiest thing I would recommend is either following the website link that is linked to your podcast, Pamela, or just typing into Google Temple Cognitive Neuropsychology Lab. Once you get to our website, you can browse through the current projects, most of which are very straightforward. Some are even surveys. You can even do some from home. But again, I’d stress that coming to Temple and participating in a study, in person, is actually a great way to do a lot of those positive interactions and boost that socialization and challenge yourself. So things that we’ve been talking about today.

28:05 Pamela D. Wilson: Great.

28:07 Katherine Hackett: So go on to the website, you can just Google and somebody can reach out to you.

28:10 Pamela D. Wilson: Perfect. Katherine, thank you so much. Listeners, again, I’ll give the website after I come back after this break but it’ll also be in the podcast transcript for the show. So there will be a way for you to get to learn more about these clinical studies and to participate. Coming up after this break I will have more on the subject of why elderly parents refuse help and what you can do about it. Tips and solutions for caregivers and aging adults are on my website, PamelaDWilson.com. Share your technology skill with your family members. Install your favorite podcast app on your parent’s cell phone and show them how to listen. I’m Pamela D. Wilson, your host, you’re listening to The Caring Generation live on the BBM Global Network, Channel 100, and TuneIn radio. Stay with me, we’ll be right back after this break.

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31:11 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults coming to you live from the BBM Global Network, Channel 100, and TuneIn radio. I want to give you the website for Temple University again, it is wwwsites.temple.edu/cogneuropsylab/current-projects. This will be in the transcript for the show in case you missed it or weren’t able to write it down. We’re back to the subject of why elderly parents refuse care, and what to do about it. Earlier, we were talking about a lack of motivation to change or improve a situation. I think many of us can empathize with that, although when we’re the caregiver for an elderly parent, we just want to fix things.

32:00 Pamela D. Wilson: Male care givers especially want to manage situations, and fix problems. The challenge is that with elderly parents who refuse care, fixing a lack of motivation it can be more of a challenge than we ever imagined. As caregivers we like to try logic. Sometimes logic works, sometimes it doesn’t. We all have something that we should do, but why don’t we? It’s because the loss or the consequence has to be greater than our desire to do nothing. For example, if the only thing between an elderly parent staying at home or moving to a care community is the ability to walk and not fall, walking and exercise for balance might seem like a good idea.

32:43 Pamela D. Wilson: Becoming and staying motivated, it can be a tricky thing. How many goals are set to exercise or lose weight? We start and then we give up, because immediate results aren’t happening. This is especially true with elderly parents who refuse care. Because any type of change for them, it is going to take time and happen over time. So how do we motivate them? Part of it depends on understanding the why, meaning, why an elderly parent doesn’t want to take action. Part of it results from fear. Let’s talk about four fears that elderly parents have that contribute to why they refuse care. They include a loss of control, fear of not being seen as able or capable, fear of not having enough money, and fear that their health is going to get worse. Loss of control is a fear met with statements like, “Oh, I don’t need any help,” or “When I need help, I’ll let you know.”

33:37 Pamela D. Wilson: When we and our elderly parents feel that life is out of control, it usually means that we feel that circumstances are just taking over our lives. The way to control is to get clear on what we want and what we don’t want. So let’s look at a conversation with an elderly parent, and how we might start this out. It goes like this: “Mom or Dad, I get it. You’re saying that you don’t want any help. I worry about you. I’m noticing that it’s more difficult for you to take a shower because you’re afraid of falling. I know you want to stay here in the home. A fall could make that impossible.” Then you press the pause button. You mentioned what your elderly parent wants which is to stay at home. You mentioned your concern, and you mentioned what they don’t want which is leaving the home.

34:21 Pamela D. Wilson: So then you go on and you say, “Well what if we work to come up with a few solutions?” The key is that you want to have some solutions in your back pocket when you’re talking to them about this. And in the case of bathroom safety, think about installing grab bars in and near the shower or tub, non-skip-bath mats. Even go to the extent of considering a raised toilet seat. While you’re looking at bathroom safety think of everything that might be of help to your aging parent. Taking steps to avoid that fall it’s very wise.

34:51 Pamela D. Wilson: Know that the conversation the first time may fail, and you may have to bring it up again. Your elderly parent could also be worried about the cost of installing bathroom equipment. Which can be another reason why elderly parents refuse care — money. Talking about costs for safety equipment and care costs in general, helps them become more comfortable talking about money. When an elderly parent refuses care because of money you might hear things like, “I’m not made of money.” Or they may just say, “No,” in response to any suggestion that you make that has a cost. We all know that some things we readily spend money on and other things we resist because we don’t see it as necessary.

35:35 Pamela D. Wilson: The discussion point with elderly parents is really one of value, the idea of what’s it worth to you to stay home. In the case of bathroom safety the question could be, “Is it worth it for you to spend $250 for bathroom safety equipment, so that you can stay home if I help you pay for it?” When you pose the question in a results-oriented manner with the result being something that your parent wants, staying at home, it might be easier to get a yes, instead of a no.

36:09 Pamela D. Wilson: If you also realize that an elderly parent is concerned about having enough money, extending that conversation is a good idea so that you can understand what their financial concerns are and maybe they will actually tell you how much money they have. So it sounds like this, “Mom or dad, you seemed concerned about money. Why don’t we investigate some costs in home care, a care community if that ever becomes a need. I can help with this.” The idea is that they tell you if they can pay for this or not. If they resist, and they may not have enough money saved, or they may be embarrassed about not having saved enough money. Which brings us to our next fear of elderly parents who refuse care, it’s not being seen as capable. In this case, the fear of not having saved enough money to pay for care.

37:00 Pamela D. Wilson: How do we get over this hurdle when elderly parents may be afraid of sharing financial information with us, which is another fear. As adult children, it’s up to us to make our elderly parents feel comfortable talking about money. The conversation goes like this, “Mom or Dad, I get it, talking about money might be uncomfortable. I’d like to make sure that we are aware of care costs and options for the care that you want before something happens. Are you okay if I do some research about costs and then we can talk about what you want so that we don’t have to worry about what if something happens.”

37:35 Pamela D. Wilson: If you notice, all these suggestions with elderly parents aren’t telling them but more about asking permission to help. Examples like, “Are you okay with this? We can talk. I worry about you. I’m noticing this. I’d like to help.” The goal is to ask questions so that elderly parents have an opportunity to respond and to participate. One of the fears about control, is that children we will take over the lives of our elderly parents and they don’t want that. Stay with me. We’re going to continue our conversation after this break. Next week the subjects include women’s health care, how to get the right diagnosis for illnesses that may seem hard to diagnose, and by caregiver request, Caring for My Elderly Mother is Killing Me.

38:21 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. You can find more helpful information on my website, which is PamelaDWilson.com, my caregiving library, helpful videos, my online courses… You are listening to The Caring Generation live from the BBM Global Network, Channel 10O, and TuneIn radio. All of the podcasts are on my website at PamelaDWilson.com. Stay with me. We’ll be right back after this break.

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41:11 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. This is The Caring Generation coming to you live from the BBM Global Network, Channel 100, and TuneIn radio. Tips and information for caregivers and aging adults are on my website, PamelaDWilson.com, along with podcast replays of the Caring Generation shows. We’re back to talk about why elderly parents refuse care. Fear of not being seen as capable and fear of worsening health are two very real concerns. Your elderly parents raised you. It’s difficult today for them to accept that they may need help from you.

41:49 Pamela D. Wilson: And as many of you know, your parents might see you as that 10 or 12-year-old child that they raised. Establishing trust with your elderly parent that you want to help and will be there for them is important. Along these lines, many elderly parents don’t want to be a burden to adult children. When talking about accepting help, you can say things like, “I understand that accepting help may be difficult for you since you were the one that ran the household. We’re all going to need help one day. Tell me what you’re worried about, so that we can work through this together. I worry about you. I want you to have the health that you need whether it’s me or a paid caregiver.”

42:34 Pamela D. Wilson: That conversation introduces the idea of options. Whether it’s me or a paid caregiver. Another concern about elderly parents who refuse help is that adult children caregivers may not be able to be the sole caregiver. Which is why I mentioned paid caregivers. As we talked last week with Rita Choula of AARP, balancing work and caregiving is a challenge for adult children. If you missed that show or any of the past Caring Generation radio shows, they’re on my website, PamelaDWilson.com. Go to the media tab and then scroll down to the Caring Generation radio show. As we talk about how to talk to elderly parents who refuse care, sharing these radio shows and podcasts with them can be very helpful.

43:19 Pamela D. Wilson: Download a podcast app to their cell phone, show them how to listen to the program. Let’s talk about the reality that the health of our elderly parents, for better or worse, is likely to get worse, not better. What does this mean for you as the caregiver, and for your elderly parent? The answer for your elderly parent who experiences further health declines, is that they will need more care and assistance. Whether that is from you, someone else, a paid caregiver, or a care community.

43:52 Pamela D. Wilson: The answer for caregivers is more time pressure and possibly financial support. Last week, we talked that caregivers contribute anywhere from $7,000 to 12,000 a year for elderly parents who need a lot of care. More time is going to be needed from you to assist elderly parents who may initially refuse that help. But what do you do when they flat out refuse to accept help? Because this happens. You as the caregiver, you’ve probably tried everything: You’ve brought up concerns in as many ways as possible. And still they say no.

44:26 Pamela D. Wilson: You’re losing sleep at night. You are worried. What do you do? You can talk to other family members to see if they will try to talk about care and costs with your parents.  Maybe a different person, a different approach is exactly what’s needed. Your elderly parents may be more willing to talk to another family member about their concerns. You may also want to involve a geriatric care manager. What is this? For over 20 years I served as a professional fiduciary and a care manager. Because sometimes it does take somebody from the outside of the family to bring a new perspective to a care situation. While you may have to be the one who pays to involve the care manager, care managers can talk to your parents objectively about costs. Not in a threatening manner, but in a informative manner so that they understand what in-home care costs, what care communities cost.

45:23 Pamela D. Wilson: This can give you peace of mind and can help you sleep at night. If you try that and it still doesn’t work then it may just be time to accept that your elderly parents want to be in control. The reality is that everybody can make choices, even bad choices, and that includes our parents. Accepting the decision of elderly parents to refuse care though it can be emotionally distressing. There’s always this thought in the back of our heads that we might have to step in, when some type of disaster happens. And you’re right to a degree. But before thinking this, let your elderly parent know that you have tried to help. You can say something like, “Just so we know what do you want if X happens, meaning, a disaster. Because it’s clear that you don’t want my help right now.” Your elderly parent may respond with something like, “Oh that’s never going to happen to me. What are you thinking?”

46:18 Pamela D. Wilson: They may be in denial about future events because today, everything is okay. At this point, you may be swearing saying that you will never be like your elderly parent. What steps are you taking today to make sure that your later years in life will be different? Look at your life today. What can you learn from this experience with elderly parents who refuse care? If you’re healthy, do you spend time with healthy friends, engage in physical activity and healthy nutrition? If you smoke, are you considering quitting? If you need a reason why as motivation to quit smoking, check out The Caring Generation podcast called Tired of Being a Caregiver.

47:02 Pamela D. Wilson: On that show there is an informative interview with Dr. Brooks Cash about smoking and digestive problems that might surprise you. How does this conversation make you feel? Open to information or resistant? I ask this because I purposely put you in the place of your elderly parents, when you start asking these types of questions. Placing ourselves in the life situations of our elderly parents  — it can be challenging if we don’t have a lot of empathy or compassion, or a desire to understand their thinking and their perspective. It’s only with empathy, compassion, patience that we can become successful in learning why our elderly parents do refuse care. Not talking about care situations won’t avoid the inevitable for us or our elderly parents.

47:52 Pamela D. Wilson: It’s better to talk about these things before we have problems. Creating solutions with the help of our elderly parents is better, but sometimes not just possible. Next week, we’ll be talking about women’s health care, physician bias, getting the right diagnosis, and Caring for my Elderly Mother is Killing Me. After this break we’ll have some final tips to working with elderly parents who refuse care. Helpful information for caregivers and aging adults is on my website at PamelaDWilson.com, my caregiving library of articles, videos, my blog, online courses, and podcasts from The Caring Generation radio show. I’m Pamela D. Wilson, your host, you’re listening to The Caring Generation live from the BBM Global Network, Channel 100, and TuneIn radio. Stay with me, we’ll be right back after this break.

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51:02 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host, this is The Caring Generation radio program for caregivers and aging adults live on the BBM Global Network, Channel 100, and TuneIn radio. Helpful information is on my website at PamelaDWilson.com. Let’s continue our conversation about why elderly parents refuse help. When they deny care, or refuse help, we want to examine our intentions, and our thoughts, and our motivations. What’s in it for us, the caregiver, if our elderly parents do what we think they should do? Can we remain objective, and look at the facts of the situation, instead of what we think has to happen?

51:47 Pamela D. Wilson: For example, when my dad was living, he wanted to stay in the family home. My sister who was the main caregiver wanted my dad to move to an apartment near her home for the sake of convenience. She had him convinced three or four times, and at the last minute, every time he changed his mind and he refused to move. The idea of what my sister wanted was convenient for her. But it really didn’t consider what my dad wanted. Which was to stay in the family home. As caregivers the idea of convenience for us versus necessity, versus what our parents want is important to think about. When we look at the why of why an elderly parent should do something, do we understand the why for our parent?

52:36 Pamela D. Wilson: Have we asked? Have we become personally judgmental or angry that our elderly parent doesn’t do what we want them to do? Have we taken an all-or-nothing attitude? Arguing with our parents? Telling them that we’re going to walk away? Are we so frustrated with how much time we’re spending? And our elderly parents aren’t doing anything to help us. Paying attention to how we respond to stressful situations as a caregiver tells how compassionate we are, and how empathetic we are. If we take a win-all attitude we might be too emotionally invested in the outcome of what we want our parents to do, and we could be setting up a win-lose situation.

53:23 Pamela D. Wilson: Caregivers who are emotionally invested and too close to situations can lose perspective and become over-controlling. As with our elderly parents who refuse care because they feel life is out of control, we do the same as caregivers. The more life goes off track, the more we want to control the things that we can control. It’s the same for our parents. How can we use our feelings as caregivers to understand the feelings of our elderly parents who are afraid of losing control? Who are afraid of change? Who fear looking incapable and who honestly are worried about running out of money? We have to take a step back from that situation and try to look at it objectively and really decide, “Do we really want to win the battle and have our parents lose?”

54:14 Pamela D. Wilson: Rather than try to fix everything sometimes we just have to work with them and try to get it all worked out. We caregive because we love. Why do elderly parents want to stay at home? Because they love their homes. It’s safe, it’s comforting and everything else outside of that might be a little scary. Today our elderly parents need comfort from us. Next week, we’ll take this conversation further with the idea of Caring for My Elderly Mother is Killing Me. I know that idea may be shocking but many caregivers feel this way. And you told me that that’s what you want to talk about.

54:48 Pamela D. Wilson: Listeners and caregivers, thank you for everything that you do every day, every week, in taking care of yourselves and as caregivers, and helping others. Share The Caring Generation with your family and your workplace, so that we can make caregiving something we talk about. Helpful information for caregivers and aging adult is on my website, PamelaDWilson.com where you can listen to podcasts of this and all of the past Caring Generation radio shows. You can send me show suggestions by clicking on the “contact me” button.

55:23 Pamela D. Wilson: Thanks for joining me on The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM Global Network, Channel 100 and TuneIn radio. I look forward to being with you again next Wednesday evening. Please invite your family, your friends, to join us. You’re listening to The Caring Generation live from the BBM Global Network, Channel 100, and TuneIn radio. God bless you all, sleep well tonight, have a fabulous day tomorrow, and a great week until we are together again.

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55:56 Announcer: Tune in each week for The Caring Generation, with host Pamela D. Wilson. Come join the conversation and see how Pamela, can provide solutions and peace of mind for everyone, here on Pamela D. Wilson’s The Caring Generation.

Looking For More Help Managing Care for Yourself or Elderly Parents? You’ll Find What You Are Looking For in The Caring Generation® Library in the Section Called Denial and Refusal of Care.

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.

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