Moving Home to Care For Sick Parent – The Caring Generation®
The Caring Generation® – Episode 80 April 7, 2021. On this program, Moving Home to Care for Sick Parent, caregiving expert Pamela D Wilson offers insights for adult children considering moving back home to care for elderly parents from another state, city, or foreign country. Guest Dr. Catherine Riffin from Weill Cornell Medicine discusses research about caregiver interactions with primary care medical practices and the role of caring for a sick parent with chronic disease.
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Moving Home to Care for Sick Parents
0:00:04.0 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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0:00:37:36 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, eldercare consultant, and guardian of The Caring Generation. The Caring Generation focuses on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, and everything in between. It’s no surprise that needing care or becoming a caregiver changes everything. The Caring Generation is here to guide you along the journey to let you know that you’re not alone.
0:1:04:96 Pamela D Wilson: You’re in exactly the right place to share stories, learn tips and resources to help you and your loved ones plan for what’s ahead. Invite your loved ones, family, and friends to listen to the show each week. This week, we’re looking at the pros and cons of moving home to care for sick parent, a grandparent, or someone else you care about. Our guest, Dr. Catherine Riffin, discusses her research about interactions between caregivers, aging parents, and primary care physicians.
01:39:92 Pamela D Wilson: If you are moving home to care for sick parent, it’s highly likely you will be involved in medical care for a parent. Dr. Riffin is an Assistant Professor of Psychology in Medicine in the Division of Geriatrics and Palliative Medicine at Weill Cornell Medicine. If you are thinking about moving back home, one of the first questions you want to ask yourself is, why did you initially leave home? Was it to go to college?
02:08:69 Pamela D Wilson: To live on your own, or to get married. Or were there other issues like wanting to get away from controlling parents or brothers and sisters that you didn’t get along with? When we leave home, and we’ve been away for years, it can be easy to forget about why we left in the first place. When considering moving home to care for sick parent start with insights about why you left and write them down.
02:34:95 Pamela D Wilson: If there were no significant concerns except wanting to be on your own and you have a good relationship with your parents. Then moving back home from a relationship perspective may not be an issue. If you left to get away from your parents or siblings, what has changed since you left? Did you repair those relationships, or do the underlying issues remain?
02:59:76 Pamela D Wilson: Moving home to care for sick parent may bring the conflict you left back into your daily life. From a practical standpoint, what is your plan to resolve the conflict? Is it possible to discuss or mend these relationships before moving back home to care for sick parent? Sometimes a little distance can be positive in resolving old wounds. Depending on the scale or significance of the issues, what about a visit home before committing to moving home to care for sick parent.
03:33:86 Pamela D Wilson: Especially if you are the only one in the family considering this life-changing decision. If this is the case, why aren’t your other brothers and sisters stepping in to help? Or are they helping but not choosing to uproot their lives? Are your siblings aware that you are thinking about moving back home to care for sick parent? What are their thoughts? Are there concerns not being discussed here that can result in more conflict?
04:05:07 Pamela D Wilson: Have you debated moving home to care for sick parent as a family—meaning discussing with your parents, brothers, sisters, and their families? Are there any family rivalries? Childhood favoritism or competition that might enter into the picture? Moving home to care for sick parent involves not only you and possibly your spouse and children but also how other family members might feel about the situation.
04:36:49 Pamela D Wilson: What expectations do you have? Is your plan to work, to live on your own, and care for your parents, or give up your job and live with your parents? If you have a spouse or partner, will you stay home to care for your parents, and will your spouse work? If you have children, how will they integrate living with your parents? What financial discussions have you had with your parents and within your family? You might think that moving home to care for sick parent is a decision between you and your parents. It is—but it’s not.
05:16:49 Pamela D Wilson: To be fully transparent and honest to avoid family conflicts with brothers and sisters, know that this decision extends beyond you and your parents. Especially if you become partially financially dependent on them even if the financial dependence is only for “room and board.” Let’s think back to childhood when you were financially dependent on your parents. As you moved toward adulthood, how did that feel?
05:52:29 Pamela D Wilson: Were you itching to get a job and move out? If so, what makes you think that moving into their home to care for them 24/7 might be a positive environment—physically and emotionally—for you? I know. These are tough questions, but someone has to do the asking because most adult children don’t think of the long- and short-term consequences and effects of moving home to care for sick parent.
06:23:83 Pamela D Wilson: If you are married with a family, what steps will you take to make sure your family remains a priority while caring for sick parents? Are you up to being a caregiver? Do you know the tasks and work that caregivers do? Are you ready to change a parent’s diapers, attend medical appointments, and complete a long list of other time and emotionally-draining tasks?
06:52:45 Pamela D Wilson: My grandma said that getting old wasn’t good. Being a caregiver may not be suitable for you if you’re not mentally prepared for the game. Later in the program, we will talk about how to gain mental strength or mental toughness, which is beneficial for anyone who agrees to be a family caregiver. To gather more information and insights about the tasks and work that caregivers do, what do you know about the care needs of your parents today and how these might change in the future?
07:28:09 Pamela D Wilson: How much time have you spent with them on the phone or in person over the last six months or a year? Are you aware of their medical conditions? What medications do they take? How many times they see the doctor, and for what reasons? If you have not had consistent or ongoing contact, you might be surprised by how much help elderly parents need.
07:57:49 Pamela D Wilson: Caregivers often underestimate the amount of time that caring for sick parents can consume on a daily, monthly, or yearly basis. As you gather information about your parents’ needs, it is vital to have open discussions about expectations. What will your parents expect of you, and what do you expect in return from your parents? These expectations could be time commitments, financial support, participation level, and effort invested in care activities.
08:35:72 Pamela D Wilson: Responsibilities for paying household bills, grocery shopping, meals, and so on. No detail is too small if the goal is to have this situation work out positively for everyone involved. Few families go into great detail when considering all aspects of moving home to care for sick parent. Those who do are often more successful and pleased with the arrangement.
09:04:83 Pamela D Wilson: Families who do not thoroughly investigate the pros and cons, discuss expectations, time frames, and so on most often find themselves in situations of regret where an initially compatible situation turns out to be beneficial for the parents but negative for the son or daughter and his or her family. For this reason, creating an exit plan when considering moving home to care for sick parent is imperative.
09:39:76 Pamela D Wilson: Thinking clearly about a situation is easier before becoming emotionally involved and invested in day-to-day care activities for aging parents. When you think about a formal agreement or time commitment, think about this from the standpoint of an employee or an independent contractor. You agree to a caregiving project. Define the scope of the project. What you are willing to do, what your parents will do.
10:10:95 Pamela D Wilson: Look at the time frames and discuss financial and other implications. The fewer surprises that arise, the better. Add to these discussions what your parents want for care if or when their health gets worse. Is moving to a care community an option, or do they want to remain at home? If staying at home is the goal, what might that look like in terms of time and effort from you or budgeting to pay for paid caregivers?
10:44:25 Pamela D Wilson: Looking at the pros and cons of moving home to care for sick parent can be an exercise in planning for the needs of parents. As a single or married adult child, you also want to predict how this lifestyle change will affect you personally, your family if they are involved, your income, career progress, and retirement savings. While many adult children believe they have a duty to care for aging parents, moving home to care for sick parent goes well above and beyond simply being a caregiver.
11:22:63 Pamela Wilson: Moving home to care for sick parents is not a decision to be taken lightly but with great consideration for the short- and long-term implications. Next, we will talk about tips for gaining mental strength useful in caregiving and many life situations. Helpful articles, tips, my Caring for Aging Parents Blog, videos, and online elder care courses are on my website at PamelaDWilson.com, the place to help you and your family start thinking, talking, and planning for health, aging, caregiving, and everything in between. I’m Pamela D Wilson on the Caring Generation. Stay with me; I’ll be right back.
12:35:95 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation, the only program of its kind caring to make your life easier by tackling uncomfortable and intimidating discussions about aging, caregiving, and everything in between. If you want to avoid unintended consequences and unexpected caregiving issues—if you’re not sure what to do—maybe things aren’t working out as you expected— my online caregiver education courses offer solutions for caring for aging parents.
0:13:05:89 Pamela D Wilson The A to Z of caregiving is in my online caregiver course called Stay at Home: Taking Care of Elderly Parents at Home and Beyond and managing daily care and the legal aspects of decision making for parents with cognitive issues like Alzheimer’s or dementia in my course called How to Get Guardianship of a Parent on my website at PamelaDWilson.com.
0:13:30:89 Pamela D Wilson: Let’s continue our conversation about moving home to care for sick parent and the idea of mental strengthening so that your caregiving activities and relationships can be more successful. Caregivers tell me that they are so busy caring for aging parents, working, taking care of their families, going to school, and participating in other activities that they barely have time to sleep, participate in self-care, or think. When we consider moving home to care for sick parent thinking about this one is an important activity we can engage in because of the short- and long-term consequences.
0:14:19:38 Pamela D Wilson: Yet if we’re honest, many of us go through the daily or weekly routine of life and don’t think about where or how we spend our time. We just do whatever comes next. For some, you may have a job that involves planning, budgeting, production, sales, accounting, or marketing. If so you likely spend time planning and thinking because you may have an outcome or a goal—a process or what you do to get there, and then systems that you use.
0:14:53:93 Pamela D Wilson: We can look at moving home to care for a sick parent as a work project. Because as caregivers who know—who have been caring for sick parents for some time—caregiving is work, and sometimes a lot of work. Highly involved caregivers contribute upwards of twenty-one or more hours each week to the care of aging parents. Many of these caregivers hold down full-time or part-time jobs in addition to caring for parents.
0:15:23:80 Pamela D Wilson: So it’s easy to see why caregivers are in go mode versus thinking mode most of the time and why adult children or spousal caregivers suffer emotional and mental burnout. In situations of moving home to care for sick parent, you may have so many things to keep track of that your brain becomes full, and you can’t think. Exhausted caregivers suffer mental fatigue.
0:15:52:39 Pamela D Wilson: Physical and mental fatigue is why the idea of seeking helpful caregiving information, joining an online or in-person caregiver support group, or taking an online elderly care course seems like “too much.” All of these are reasons to develop mental strength or mental toughness. What is mental strength? It is the ability to be self-aware to think, feel, and act. Part of this involves considering the problems you might encounter and then visualizing or thinking about how you will respond positively.
0:16:34:68 Pamela D Wilson: Sounds great, right? A challenge in moving home to care for sick parent is that you probably have no idea of the problems you might encounter. Why is that? Well – it’s because you’ve never done this before. So how do we manage through moving home to care for sick parent and managing unexpected problems? One answer is to be an information seeker and ask questions. Rather than taking everything—information, events, feelings at face value, become an observer and an investigator.
0:17:15:31 Pamela D Wilson: Being an observer is a habit we can all learn that involves paying attention to situations and how we and others like aging parents react. Then, for ourselves, asking the question—why did I react that way? This moves us to the thinking part of moving home to care for sick parent. Mom or dad yelled at me for something I said or did. I felt angry. What’s that about? Feeling angry about moving home to care for sick parent could have reminded us of being yelled at as a child when we were living with our parents. Or —yelling may not be something we have in our lives.
0:17:58:18 Pamela D Wilson: Instead of yelling in our families and with our friends, we may have discussions or conversations. One step further. Being yelled at for something I did or didn’t do makes me, as the caregiver—who gave up my life moving home to care for sick parent—feel unappreciated. Gaining insight into our feelings is a big part of gaining mental strength to understand and act on our feelings, responses, and behaviors to situations.
0:18:31:08 Pamela D Wilson: The idea of think, feel, and act can also help us avoid those foot in the mouth situations where we do or say something reactively and cause problems we don’t need. When I trained my care managers, one of the most important aspects of communication that I emphasized was to reflect before reacting. Which, as we know, can be difficult in a heated situation except when we have gained the mental toughness to train ourselves to know why we are reacting the way we do and what actions, words, or behaviors from another person—our parents, a spouse—trigger these behaviors.
0:19:20:73 Pamela D Wilson: Instead of losing control in a heated situation related to moving home to care for a sick parent, we can watch the situation happen like an observer. Watch having our emotions triggered, stop, think and say to ourselves, “Oh no, not this time. Say to ourselves—I recognize what you’re doing. I control my emotions and my responses—NOT you. I refuse to fall into that trap again. I refuse to play along. You’re on your own on this one.”
0:19:58:81 Pamela D Wilson: That is a powerful observation, and the thinking part feels amazing when you can learn this aspect of mental toughness. Another aspect of mental toughness is having consistent behaviors. Consistency in our actions relates to how we respond to anyone involved in moving home to care for sick parent. This includes mom or dad, our husband or wife, children, brothers, and sisters. In how many life situations or relationships do you know someone who flies off the handle with impatience or anger?
0:20:38:02 Pamela D Wilson: This may be you. This is emotionally upsetting, right. This behavior may hit one of your triggers where you want to react—but now you don’t. The behaviors of inconsistent people are often up and down. This is true for family members or friends who have mental health concerns. You might see this person, and you are never sure what to expect. Who do we have today? The nice calm mother or mom who is ranting and raving, accusing you of things you did not do, or telling you that you are a horrible, worthless person.
0:21:19:49 Pamela D Wilson: All of those are “ouches” to caregiver self-esteem. When we look at this from an opposite perspective of consistent behavior that can be positive, how does that make us feel? If you have a relationship with your spouse or a parent or a friend and no matter what happens, bad or good, the response you receive is always loving, considerate, or reassuring. This builds trust. You feel comfortable telling this person the good and the bad that happens. Because you know you can talk about whatever arises.
0:21:56:56 Pamela D Wilson: As a caregiver, this aspect of mental strength – consistent behavior can also be important when combined with think – feel – act, and planning for how to react to unexpected situations. You may be the son or daughter moving home to care for sick parent who remains calm in stressful situations like a trip to the emergency room or a fall. Problem-solving and looking several steps ahead is a component of mental toughness, especially if you play scenarios in your mind.
0:22:34:80 Pamela D Wilson: Mom or dad had a fall. You check for broken bones, call 911 if necessary. While 911 is on the way, you may be packing a bag to take to the hospital emergency room. You might want to ensure you have care information with you like your parent’s medical diagnoses, medications, and other information that the hospital staff may want. You drive separately rather than riding with the ambulance so you have a way to get back home. You call your husband or wife to let them know about the issue and so on.
0:23:09:42 Pamela D Wilson: Mental toughness that is beneficial in caregiving situations can be gained in workplace situations and through other experiences. It can also be learned on its own through daily practice and reinforcing habits of think – feel – act, having consistent behaviors, and thinking ahead. We’ll talk more about this in the second half of the program. Next, Dr. Catherine Riffin shares her research about the experiences of caregivers who take aging parents to primary care medical appointments.
0:23:44:42 Pamela D Wilson: Visit my website, PamelaDWilson.com, where you will find information about keynotes, webinars, online courses about elderly care, and all of The Caring Generation podcast episodes. Stay with me; I’ll be right back.
0:24:26:74 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, and elder care consultant on The Caring Generation. The only program of its kind caring to make your life easier by tackling uncomfortable and intimidating discussions about aging, caregiving, and everything in between. Join me every Wednesday for The Caring Generation. The show is not limited by time zone or location—caregivers worldwide listen.
0:24:50:70 Pamela D Wilson: Share and visit my website PamelaDWilson.com with others you know. One in 4 people are caregivers looking for hope, help, and support and don’t know where to turn or who to trust. You’re about to meet Dr. Catherine Riffin she is an Assistant Professor of Psychology in Medicine in the Division of Geriatrics and Palliative Medicine at Weill Cornell Medicine. Her research examines how older adults and their family caregivers manage chronic illness, with a specific focus on caregivers’ interactions with the health care system. Through her research, she seeks to give caregivers a voice and links to resources and support.
0:25:32:49 Pamela D. Wilson: Dr. Riffin, thank you so much for joining me today.
0:25:35:19 Dr. Catherine Riffin: It’s an absolute pleasure to be here with you, Pamela. Thank you for inviting me.
0:25:40:51 Pamela D Wilson: It’s my pleasure. So I found you through research, and I want to ask you some questions. Caregiving is a family issue. A lot of adult children caregivers may feel ignored by the doctors when they take their parents to medical appointments. What was identified in your research about these caregiving issues and the ability to complete patient care at primary care medical appointments?
0:26:04:97 Dr. Catherine Riffin: First of all, this is a really excellent question, and it’s so true for adult-child caregivers as well as spouses. I think it’s particularly poignant when you’re caring for a parent. So a major issue that was identified by our research was time. This was raised in our interview studies (Caregiver Needs Assessment) with primary care physicians as well as patients and family caregivers, both adult children and spouses. And it was also the most commonly endorsed challenge in our nationwide survey of primary care clinicians, where the vast majority, about 80% of respondents, said that time was the biggest barrier.
0:26:51:22 Dr. Catherine Riffin: And in addition sort of through interviews with primary care physicians. General practitioners or internists said so we only have 15 minutes for each of these patients, so speaking with adult children at length isn’t really feasible in that context. So, in addition to the issue of time, they also talked a lot about inadequate reimbursement, which can be a real challenge in the healthcare setting. As well as their inability to have private discussions with the caregiver. So as of now, there are limited payment structures to reimbursement. For having separate discussions with family members. Although there are new dementia care planning codes as well as advanced care planning codes that hopefully will help us to do better.
0:27:49:76 Pamela D Wilson: Your research study talked about a caregiver assessment, and I know this from my caregiving groups. Caregivers can be very sensitive about being told that they need help or be judged about their actions. What they’re doing, what they’re not doing. Were there any concerns mentioned by these caregivers about taking an assessment?
0:28:07:83 Dr. Catherine Riffin: Absolutely. Absolutely. Many caregivers with whom we spoke and as you mentioned in your own groups. They’re really adamant that any type of assessment, whether it’s formal or informal, or questions really need to be free from judgment about the caregiver’s or the family member’s “performance” or abilities in any capacity and really limit assumptions that all caregivers need or want help.
0:28:42:12 Dr. Catherine Riffin: There is such wide heterogeneity in the caregiver experience that medical professionals—or really anyone for that matter—it’s crucial not to judge the caregiver. Caregivers are hard enough on themselves. The goal of the assessment really needs to be explicitly stated and that it’s really just there to support and provide information if and when the caregiver is ready and feels that they need support.
0:29:14:91 Pamela D Wilson: Let’s talk about how the doctors felt about this. How did they feel about their responsibility once they received these assessments to respond to those concerns?
0:29:24:28 Dr. Catherine Riffin: This is a really interesting question, and in fact, virtually all of the doctors that we’ve surveyed and talked with them that they feel responsible to discuss or to assess the caregiver’s concerns. And in fact, I’m actually working with a student right now who is looking at the factors that are associated with physician’s perceived responsibilities to assess and respond to caregiver’s concerns, and although she’s only begun to look at the data, so we need to be careful about drawing conclusions at this stage. But, it looks like physicians who are caregivers themselves—or who have a personal experience with caregiving are more likely to feel responsible for responding to the caregiver’s concerns.
0:30:14:91 Pamela D Wilson. You know, I think that’s true. A lot of caregivers in my group will say, “well, it takes a caregiver to understand what another caregiver goes through.” So that totally makes sense. Some states have mandatory —well, actually all states do—have mandatory reporting laws. Were there any concerns that came up in this study about maybe reporting caregivers for abuse or even patients for not taking care of themselves?
0:30:38:94 Dr. Catherine Riffin: Yes. You know, some of our research does show that providers are concerned about that personal liability and, more specifically towards the caregiver, their inability to act on those concerns. Particularly in the context of these mandatory reporting rules. When the caregiver is not their patient, they feel like they’re in a bind about what to do. So, for example, one physician said that if a caregiver says, “I’m depressed to the point of having suicidal thoughts.” The provider feels like they’re liable and obviously needs to report but then unable to treat them or to provide a referral because they’re not the treating physician.
0:31:28:45 Dr. Catherine Riffin: So that was a real challenge for physicians. Abuse is another very important issue, and I work with a number of folks who focus on elder abuse, and it’s one of the many reasons that doctors ask the caregivers to sit in the waiting room rather than to attend the visit. They’d rather not have the personal liability for the mandatory reporting. Often, doctors will want to have alone time with the patient, too, on the other hand, so that they can learn whether there are issues of abuse and neglect. So there are many, many facets to that one very important question.
0:32:11:92 Pamela D Wilson: And what actions were identified for follow-up as a result of the surveys and your research?
0:32:18:49 Dr. Catherine Riffin: So, a few concrete actions included, beyond doing just one assessment or the screening of the caregiver, they advocated for having discussions with the caregiver. So that the caregiver isn’t just filling out another form about his or her concerns but really having a meaningful discussion about what they need to better support themselves or better support their patients. Many of our participants and who we talked with thought the discussions should involve separate consultations, as I alluded to before, for the caregiver so that they can voice their own opinions and concerns.
0:33:09:22 Dr. Catherine Riffin: They also, in terms of follow-up to an assessment, thought that these things should really involve an interdisciplinary team beyond the physician. For example, if the practice had a social worker or a nurse who the caregiver could speak with or discuss potential options for support. Like where to get services of home health care, home-delivered meals—those types of things. So there were a number of things, a number of items that were identified as being important for follow-up.
0:33:48:70 Pamela D Wilson: You know we talked about the mandatory reporting laws, and you mentioned the physicians, in some cases, preferred the caregivers not to be in the room so that they could have findings. But then the findings talk about the benefit of having discussions with the caregivers. Is there any discussion—I know you did these surveys—that the doctors could read the surveys before the caregivers would show up. Or maybe the caregivers could fill out a form when they got there to say, “these are my issues.” Was there any talk about how to move that forward?
0:34:21:25 Dr. Catherine Riffin: Yes. So there was talk about how the practice social worker—if there was a social worker—could really be quite a valuable resource in that context. They felt that this was a trained professional who could identify issues related to abuse. Who is qualified to address any emotional concerns such as depression, anxiety, the abuse that I just mentioned, interpersonal issues.
0:34:53:18 Dr. Catherine Riffin: So that was sort of one way that they thought would be a good idea to kind of link both behavioral medicine as well as clinical or physical medicine looking at both aspects. In addition, they also thought that there would be a good, certainly a place for better referral options and better referral mechanisms to community-based services who could potentially provide a good way to help the caregiver in the community. So by linking the medical services with the community would seem to be a potentially powerful option for the future.
0:35:44:13 Pamela D Wilson. And do you know, we talked about reimbursement and time being an issue at the beginning of our conversation, if an office has one of these social workers is that—do they just give that time away or is that something that, really, they can be reimbursed for doing. Do you know?
0:35:58:25 Dr. Catherine Riffin: That’s a really good question. There are now new billing codes in the context of dementia where the provider, whether it’s a social worker or the physician, can be reimbursed, as well as in the context of advanced care planning. Meeting with the caregiver and the patient. Sometimes billing codes, the issue for physicians—is that sometimes the issue of billing codes is that there’s no physical exam for the patient.
0:36:34:65 Dr. Catherine Riffin: So when they’re having phone calls with caregivers, they have a hard time being able to bill. Now, this can also be addressed through extending the visit time or increasing the level of the visit. Which basically just means that they’re providing more encompassing chronic care to both the patient and the caregiver. So there are a number of options that I think maybe not all physicians are aware of at this point. But there’s certainly movement ahead.
0:37:10:08 Pamela D Wilson: You mentioned the advanced care planning aspect. Is that a one-time event, or can that be a multiple-time appointment?
0:37:18:35 Dr. Catherine Riffin Yes, this is an excellent question. It can certainly be ongoing, so it just doesn’t need to be a one-time point. It can be longitudinal and completed at various times.
0:37:32:28 Pamela W Wilson: And so in your opinion, based on everything that you know about this, what are the benefits that caregivers can receive from having better connections, better communications with these primary care offices? How can that benefit the caregiver and then maybe their parents?
0:378:46:64 Dr. Catherine Riffin: Yes. There are so many excellent benefits that have actually started to emerge from the research by other investigators. We know that supporting caregivers is largely associated with better outcomes for both the patient and the caregiver. So having a patient who—for the patient, having a caregiver who is plugged in is associated with a number of different outcomes, including better physical and mental health as well as delayed nursing home placements and hospital admissions. All in all, when the caregiver is healthy, happy, and productive—so is the patient.
0:38:32:41 Dr. Catherine Riffin: But there are also tremendous benefits on the caregiver side. Engaging caregivers in healthcare delivery can be really empowering. And patients often desire, in terms of both advanced care planning and decision making in other context. Really desire family involvement, so supporting this partnership is crucial. Finally, I just want to note that caregiver’s health and well-being is so often overlooked. So really involving them early and often in the care delivery process can help to ensure that they’re feeling their best and able to care for both themselves and the patient.
0:39:14:42 Pamela D. Wilson: Dr. Riffin, I thank you so much for your time and for all the research and the work that you do.
0:39:19:33 Dr. Catherine Riffin: Thank you so much, Pamela. It’s a pleasure to be with you.
0:39:14:42 Pamela D. Wilson: It’s time for a break. Up next, continuing our conversation about moving home to care for sick parents. Check out all of The Caring Generation podcasts and the show transcripts on my website PamelaDWilson.com and all of your favorite podcast apps: Apple, Google, Spreaker, Podcast Addict, Pandora, Amazon Music, Stitcher, Spotify, I Heart Radio, Podchaser, Jio Saavn, Vurbl, and More. Add the podcast app for the Caring Generation show on the cellphone of elderly parents, in-laws, family members, and friends.
0:40:01:34 Pamela D Wilson: Helpful information about caregiving and aging is on my website and in my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, available on my website at PamelaDWilson.com. I’m Pamela D Wilson on The Caring Generation. Stay with me. I’ll be right back.
0:40:47:37 Pamela D Wilson: This is Pamela D Wilson. You’re with me on The Caring Generation, the only program of its kind bringing caregivers and aging adults worldwide to talk about aging, caregiving, and everything in between. More information and support for caregivers, corporations, and groups is on my website at PamelaDWilson.com. There you’ll find information about keynote events, webinars, online courses, and more. Let me know how I can help you, your group, or your organization by visiting the Contact Me page on my website, where you can send me an email.
0:41:22:46 Pamela D Wilson Let’s return to talking about moving home to care for sick parents and the mental strength or mental toughness idea of saying no. Because moving home to care for sick parents is a significant life change for everyone involved, the ability to say no to establish relationship boundaries is highly beneficial. Saying no is difficult for many people, not only caregivers. Not saying no is what places many caregivers in situations where they feel overwhelmed, burned out, and mentally exhausted.
0:42:00:86 Pamela D Wilson: When moving home to care for sick parent, permitting yourself to say no can help maintain balance in the relationship so that the caregiver does only what a parent is unable to do. This supports independence instead of dependence on the caregiver, which should be the goal of caregiving relationships. Saying no can also ensure that the caregiver can maintain, establish, and schedule time for self-care and socialization.
0:42:35:20 Pamela D Wilson: Let’s look at other aspects of moving home to care for sick parent. If you are caring for a sick parent, it is likely that there may be one or more health diagnoses. Likely that your parent has physical difficulties or challenges that require assistance with tasks around the home and possibly personal care tasks like bathing or dressing. Be careful not to take on too much—too soon. The more you help with, the less your parent will continue to be able to do for him or herself.
0:43:14:42 Pamela D Wilson: As you become more involved in aspects of healthcare, there is much to be learned about the aspects of watching for signs that a parent’s health is worsening. Aspects like a fever or high or low blood pressure, or any type of change in condition that might indicate infection or sickness. These are aspects of moving home to care for sick parent that are not intuition-based and that caregivers can’t be expected to know without some training or information gathering.
0:43:49:59 Pamela D Wilson: These are the aspects of moving home to care for sick parent that are included in my online caregiver course Stay at Home: Taking Care of Elderly Parents and Beyond. In this online course, family caregivers learn to identify the signs that a parent may need more care and what to do before this decline becomes permanent. The goal of the course is to identify concerns early before they become significant and to develop processes to monitor the health of parents.
0:44:21:77 Pamela D Wilson: The course also takes caregivers through aspects of a health diagnosis that can become more significant if proactive measures are not taken. How to manage medications, important considerations for attending doctor appointments, and much more information that can support good care of aging parents is included in the course. As the primary caregiver moving home to care for sick parent, you intentionally or unintentionally become the center of attention for communication to brothers and sisters about your aging parents.
0:44:57:91 Pamela D Wilson: As we discussed early in the program, being transparent with mom or dad’s permission will reduce potential suspicions from siblings that information may be withheld. Ongoing communications and interactions are also important. The idea of hosting a Sunday dinner once a month or inviting brothers or sisters to spend time with mom or dad on the weekend can allow you to take time off. Moving home to care for sick parent offers opportunities to increase contact with the family by coordinating and extending invitations to family and friends.
0:45:35:57 Pamela D Wilson: While moving home to care for sick parent may have you feeling like the social committee organizer, socialization with family and friends is supportive. It’s good health and the cognitive activity for aging parents. If friends or family are physically or socially active, ask if they will take parents for walks or to exercise, or to attend outside events. Football games, sports activite4is for the children. Just going to a park to watch a baseball game. Activity has positive benefits and is a way for parents to be engaged in outer-directed activities instead of sitting at home in a lounge chair in front of the television.
0:46:26:25 Pamela D Wilson: Another component of moving home to care for sick parents and building mental strength is the ability to adapt to change positively. These changes, over time, will likely be health declines or parents needing more care. These can be problematic situations where the caregiver and other family members worry about what might happen next, thinking that it will be bad.
0:46:50:48 Pamela D Wilson: Attending doctor appointments and working with medical providers is a responsibility of moving home to care for sick parent. While you want to remain positive and optimistic, asking the hard questions that your parents may not think of or want to ask offers an opportunity to minimize unexpected situations by knowing what is likely to happen next. When the health of elderly parents advances and palliative or hospice care for end-of-life issues is engaged, families are more aware of how much time a parent might have left.
0:47:28:95 Pamela D Wilson: If there were family disagreements, this is an opportune time to resolve hurt feelings and come to closure so that when a parent passes, there are few if any regrets or thoughts of “we should have done this.” I should have done that. Discussing what to expect with doctors can offer adult children, moving home to care for sick parents, advance notice of getting their life back. If one spouse is healthy, discussing end-of-life care issues for the sick spouse also allows planning for the support of the spouse who continues to live.
0:48:05:57 Pamela D Wilson: Moving home to care for a sick parent may become less of an issue after the sick parent passes away. While the surviving mom or dad may need help, the assistance needed may not be to the degree of a full-time 24/7 caregiver. This is an opportunity for the child moving home to care for a sick parent to re-establish an independent life by obtaining a job and moving out of a parent’s home.
0:48:33:93 Pamela D Wilson: Depending on the length of time the caregiver was out of work, this may not be as easy as expected. Caregivers in this situation may find themselves with outdated work skills or in situations where potential employers applaud the caregiver for taking time off work to care for aging parents but has no interest in hiring the individual.
0:48:56:82 Pamela D Wilson: This takes us full circle to why moving home to care for sick parent is a substantial life-changing decision. While many caregivers in this situation agree they would not have acted differently, many suffer long-term personal and financial setbacks. They may place themselves in a position of relying on their children for care and eventually passing caregiving responsibilities down to the next generation of their children. It’s time for a break. Caregivers and aging parents have more in common than they think.
0:49:34:02 Pamela D Wilson: Neither wants to accept help or look like they need help because of a desire to appear in control of life situations. The reality is that accepting help can reduce caregiver struggles and make life less worrisome for elderly parents who want to remain independent. Taking steps to learn the important aspects of caring for aging parents can make caregiving relationships easier on everyone involved.
0:50:01:30 Pamela D Wilson: Take a step forward to avoid unexpected situations and prevent future care issues for aging parents. Check out my online caregiver course: Stay at Home: Taking Care of Elderly Parents and Beyond. This course and more helpful information for caregivers and aging adults is on my website at PamelaDWilson.com. I’m Pamela D Wilson, caregiving expert, advocate, and speaker on The Caring Generation. Stay with me; I’ll be right back.
0:51:00:33 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. What examples did your parents set for you about caring for aging family members? What examples are you setting for your children? Caregiving is a generational issue—be proactive by talking about caregiving, aging, and the long-term effects of health concerns in your families, workplaces, and communities. Share the Caring Generation podcasts with everyone you know.
0:51:26:64 Pamela D Wilson: We’re back for a few final thoughts on moving home to care for sick parent. Parents who live into their 80’s and 90’s are more likely to need some type of care due to chronic illnesses, disabilities, and memory loss. While we often don’t talk about aging or caregiving in families, becoming a caregiver can become an unexpected late-life surprise. Children twenty or thirty years younger, in their 50’s or 60’s may have their own health concerns.
0:51:59:04 Pamela D Wilson: The physical demands of moving to care for a sick parent may involve activities that result in strain on the body. Like helping elderly parents get in and out of bed. Waking up at night to assist them in going to the bathroom and other physically demanding tasks. For these caregivers, giving up a job and associated health insurance can be problematic for ensuring that the caregiver continues to care for him or herself.
0:52:29:01 Pamela D Wilson: Moving home to care for sick parent can be even more challenging if there is no other family to offer support. Caregivers often don’t understand what they’re getting into when moving home to care for a sick parent. Rather than finalizing retirement plans, the retirement years of adult children can be dedicated to the care of aging parents. Many retirees imagined travel, spending time with grandchildren, or becoming involved in volunteer work.
0:53:00:64 Pamela D Wilson: These dreams are delayed or totally sidetracked by care responsibilities that last for years. Sometimes much longer than expected. And then what? Just as elderly parents pass away and caregivers imagine a normal life, a spouse becomes ill, and the caregiving journey with all of its responsibilities happens again. Caregivers don’t imagine caring for a mother or father and then becoming a caregiver for a husband or a wife with dementia or other health issues.
0:53:36:95 Pamela D Wilson: Despite all of these challenges, a great learning opportunity exists for adult children who become family caregivers. Many caregivers experience a personal transformation as the result of caregiving. Adult children talk about improved relationships with elderly parents and siblings, although some experiences are not as positive. Adult children with their own children have the opportunity to model caregiving behaviors for their children that perhaps their aging parents did not model for them.
0:54:11:21 Pamela D Wilson: These early life experiences for all children form long-lasting memories and beliefs about caring for family members and how family members should be remembered after death. Empathy and compassion can also be gained for those who are suffering. Add to all of this for moving home to care for a sick parent, the learning, knowledge, and opportunity to change the future health of the caregiver. Watching elderly parents suffer from preventable health conditions or falls due to poor physical strength and inactivity can be shocking but also telling about what can be done to prevent these conditions and health accidents for ourselves as caregivers.
0:54:56:48 Pamela D Wilson: The best outcomes for moving home to care for sick parents are the discussions and visits that can occur in advance of deciding to move back home. Going in with eyes wide open, understanding the care needs of aging parents, recognizing the family support that exists from siblings if they are available, learning about health diagnosis, and having a plan for what can and might happen results in the fewest surprises. Creating an exit plan and looking at this move as an assignment can help caregivers know the length of time that they will be involved and allow for a re-entry plan back into the workforce and living independently again.
0:55:42:08 Pamela D Wilson: If you in a caregiving situation where you are not sure what to do, and you want to plan for care needs for aging parents, a spouse, or yourself and avoid unexpected ups and downs—help is on my website in my online articles, online caregiver courses, videos, this podcast and the support that I offer to groups and corporations interested in supporting caregiving conversations. Many caregivers worry about talking to employers about caregiving responsibilities.
0:56:13:03 Pamela D Wilson: In addition to this show that can help you talk to elderly parents and family members and if you’re the aging parent, your caregivers—I’ll be happy to speak with leaders in your organizations and groups. Share my website PamelaDWilson.com with your human resources manager or the decision-maker in your company or group.
0:56:33:43 Pamela D Wilson: Thank you for joining me on The Caring Generation – the only program of its kind connecting caregivers and aging adults worldwide to talk about caregiving, health, challenging subjects, and everything in between. Invite your family and friends to listen each week. I am Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Sleep well tonight. Have a fabulous day tomorrow and a great week until we are here together again.
0:57:06:21 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.
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