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Putting a Parent Into a Nursing Home – The Caring Generation®
From:
Pamela D. Wilson - Caregiver Subject Matter Expert Pamela D. Wilson - Caregiver Subject Matter Expert
For Immediate Release:
Dateline: Denver, CO
Wednesday, May 12, 2021

 

The Caring Generation® – Episode 85 May 12, 2021. On this caregiving program, expert Pamela D Wilson offers insights into decision-making about Putting Parents into a Nursing Home. Guest, Dr. Marissa Holst from the University of Minnesota Morris discusses how Culture Affects Adult Child-Parent Relationships and Caregiving Responsibilities.

To listen to the caregiving podcast, click on the round yellow play button below. To download the show so that you can listen anywhere and share it with family, friends, and groups, click on the button (the fourth black button from the left) below that looks like a down arrow. Click the heart to go to Pamela’s Spreaker podcast page to like and follow the show. You can also add the podcast app to your cellphone on Apple, Google, and other favorite podcast sites.

Putting a Parent into a Nursing Home

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.

0:00:37:62 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, elder care 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.

0:1:06:41 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 family, and friends to listen to the show each week. This week we are talking about the emotional decision of putting a parent into a nursing home. We will discuss why adult children or spouses place a loved one in a nursing home, ways to begin talking about the possibility long before the need arises, and what happens if a parent needs nursing home care but refuses to leave the home.

01:47:75 Pamela D Wilson:  Our guest for this program is Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris. Her research and teaching focus on family relationships, well-being, and relationships between parents and adult children. We will talk about how cultural differences affect caregiving and family relationships. This discussion may help us gain insights into why some families struggle more with the idea of putting a parent into a nursing home.

02:22:54 Pamela D Wilson: Nursing homes, because of the pandemic, have received more attention. Elderly living in nursing homes—also called long-term care facilities, or SNFs with the acronym of the letters SNF—have more significant needs due to physical disabilities and health issues. For example, many elderly experience mobility difficulties and may have trouble walking on their own. Others need daily support with bathing, dressing, and getting out of bed.

03:02:15 Pamela D Wilson: Many have multiple health conditions that benefit from having access to medical care from a nurse or a doctor. For some, a diagnosis of Alzheimer’s or dementia may mean that they are a wander risk, and in this case, a gated wing in a nursing home may be necessary so that they don’t wander outside and become injured. Today, a complicating factor for families is the concern about COVID and placing a loved one into a nursing home.

03:35:08 Pamela D Wilson: The first cases of COVID in the Unites States were a man in his 30’s who traveled to Wuhan China and returned to the state of Washington. Then residents of nursing homes in Kirkland, Washington. Here is a statistic you might find interesting. It’s from research from the Department of Health and Human Services Office of Behavioral Health, Disability and Aging Policy and the Office of the Assistant Secretary for Planning and Evaluation. I know—that’s a mouthful.

04:09:44 Pamela D Wilson: I will put a link to this article in the show transcript so that you can read the entire Issue Brief. This brief confirms that between February 28 and September 24, 2020, an estimated 80,193 people in long-term care facilities—meaning nursing homes—had died in 2020 due to COVID. this accounted for at least 41% of all United States deaths. The total number of deaths in the United States for this time period was about 195,600.

04:49:19 Pamela D Wilson: I don’t know about you, but these are not the statistics reported when I listen to the news. I believe that most people would be shocked to learn that the percentage of deaths by older people living in nursing homes and persons with dementia in this time period in 2020 represents 41% of all deaths due to COVID in the United States. Honestly, that’s almost half. Let me provide some more factual information. Of all the COVID deaths, 53,490 of the persons who died were diagnosed with dementia.

05:29:78 Pamela D Wilson: This data is from persons in the study eligible for Medicare living in nursing homes and out in the community.  Among the 14 chronic diseases examined, the highest diagnosis and death rates were among people with dementia. Even more interesting, the death rate was similar between persons with dementia living at home in the community at 31.4% and those living in nursing homes at 32.5%.

06:03:01 Pamela D Wilson: The common factor relating to COVID deaths is primarily dementia regardless of whether a person lives in a nursing home or at home in the community. Then living in a nursing home and then living in the community and being diagnosed with chronic health conditions. I am sharing this information because I want to point out that people in and out of nursing homes have similar death rates when diagnosed with dementia. What might this tell us? Might it validate that persons diagnosed with dementia are more highly susceptible to COVID regardless of where they live because of the state of their health?

06:44:85  Pamela D Wilson: If you are a caregiver worried about putting a parent into a nursing home who has a diagnosis of dementia – keeping your parent with dementia at home unless you are taking extreme social distancing and cleaning precautions—may have the same consequence you are trying to avoid by not putting a parent into a nursing home. That consequence is is death. More full disclosure about this report.

07:15:43 Pamela D Wilson: The Medicare beneficiaries in the study diagnosed with dementia were more likely to be female, Black or Hispanic, and have chronic multiple conditions. Visit the website page for this podcast to access the Issue Brief and make your own conclusions about what you’re hearing in the news about COVID infections, causes of death, and the pros and cons of the decision to be vaccinated if you are a caregiver for an aging parent with health conditions or dementia.

07:47:71 Pamela D Wilson: Let’s return to the discussion about making decisions about putting a parent into a nursing home. Research confirms that about half of nursing home residents are diagnosed with dementia. Understanding this may help you also realize that caring for a parent or a spouse with dementia who has multiple chronic health conditions, who has difficulty walking, getting out of bed, difficulty eating and swallowing, or who sleeps all day and might be subject to bedsores may need more care than one single caregiver can provide.

08:26:11 Pamela D Wilson: If you are in this situation and conversations about the potential of putting a parent into a nursing home were never discussed. Start the discussion now. Regardless of whether a parent or spouse has dementia or not, care needs can become too much. It’s okay to acknowledge that you can’t do everything and need help from your family or may have to make the difficult decision about putting a parent into a nursing home.

08:56:93 Pamela D Wilson: More than likely, you’ve already asked your family for help, and they didn’t step up. Let them know that you can’t be the caregiver anymore and are making plans for putting mom or dad into a nursing home. If you are the caregiving spouse, have the same conversation with your children. Now is the time for others to step up and personally or financially help if they disagree with the decision that you and your parent are making about a nursing home.

08:28:35 Pamela D Wilson: Let’s talk a little more about how we get to the point of putting a parent into a nursing home. Caregivers become exhausted for many reasons that we will talk about in the next segment of the program. There are also aspects of caring for a parent or a spouse that take more and more time as an illness progresses. When caregivers become emotionally and physically exhausted, the risk of making a mistake in dispensing medications or forgetting to do something important for the care of a parent or a spouse increases.

10:06:77 Pamela D Wilson: A caregiver who keeps going and going without realizing the toll that caregiving is taking poses a risk to an aging parent or a spouse. When you are feeling drained, fried, worn out, beat down, wiped out—are you at your best?  I know caregivers who tell me that all they want to do is sleep. Sleep deprivation has a severe effect on the brain. A lack of sleep affects every system of the body, including the immune system. Consistent sleep strengthens the immune system.

10:48:42 Pamela D Wilson: The risk of infection is more significant in people who sleep less than six or seven hours per night. As a caregiver, how much are you sleeping? Sleep also helps with brain function, learning, and memory. If your immune system is running low, you might catch frequent colds or recover from an illness only to be sick again in a short period of time. Caregiver exhaustion is a component of being a caregiver that is not taken as seriously as it should be.

11:21:46 Pamela D Wilson: Research confirms that caregivers become more ill than the persons for whom they care. The immune systems of caregivers become weak. If you want to learn more about caregiver stress and the immune system, listen to The Caring Generation Podcast interview with Dr. Christopher Fagundes from Rice University on the podcast called Elder Care Workplace Solutions.  I will put a link in the show transcript to that podcast.

11:49:15 Pamela D Wilson: Join me every Wednesday for a new episode of The Caring Generation. The show is not limited by time zone or location—caregivers worldwide listen. Install the podcast app on Apple, Google, Spreaker on your cellphone, and add it to the cellphone of grandma, grandpa, mom, dad, brothers, sisters, friends, and colleagues. Please encourage them to listen to the show each week to learn more about health, aging, and caregiving. We’re off to a break This is Pamela D Wilson on The Caring Generation. Stay with me; I’ll be right back.

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12:54:21 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. If your caregiving situation feels out of control and you don’t know how to talk to an aging parent or spouse, let me do the talking for you. Add The Caring Generation podcast app to the cellphone of an aging parent or a spouse. More information about the show and all of the podcast apps where you can find the program is on my website at www.PamelaDWilson.com.

13:19:05 Pamela D Wilson:  We’re back to talk about putting a parent into a nursing home and the many reasons why this level of care may be more practical than keeping your aging parent at home. If you don’t have family support or paid caregiver support let’s talk about practicalities for a moment. In the first segment, we talked about nursing homes and how dementia and chronic illness contribute to COVID deaths both in the nursing home and in the community.

0:13:51:16 Pamela D Wilson: We talked about caregiver exhaustion and how a weak immune system makes caregivers more susceptible to illness including COVID. As a caregiver, have you considered how your health—even a slight cold—that your parent might catch could be the end of mom or dad’s life? Or how a family member or friend who visits your parent’s home and is asymptomatic to COVID might affect a caregiving situation where you and your aging parent both have a low immune function?

0:14:26:61 Pamela D Wilson: Young, healthy people survive COVID. Elderly with dementia or several chronic illnesses may not. Let’s talk about putting a parent into a nursing home because of caregiver injury. If you have a parent who has difficulty walking or who cannot walk or transfer by him or herself and is wheelchair-bound, this is a risk for your parent and you. The simple act of helping a parent into a shower even if there is a shower chair can result in a life-threatening accident like a hip fracture.

0:15:04:06 Pamela D Wilson: The parent begins to lose balance, and the caregiver tries to stop a parent from falling. The caregiver goes down along with mom or dad. Another situation might be the caregiver attempting to lift a parent from the bed into a wheelchair and experiencing a back injury. When safety issues exist in the home, one solution may be hiring an in-home caregiver to assist. But know that an in-home caregiver cannot along lift dead weight due to injury and safety concerns.

0:15:37:51 Pamela D Wilson: However, if a parent has poor balance and can assist with standing and pivoting you and the00 caregiver may be able to help your parent with balance issues to avoid a fall. The best solution for physical issues is and has always been exercise. If you notice your parent starting to become physically weak today—don’t wait. Do something. Make a doctor appointment to inquire about strengthening exercises and then do the exercises with your parent.

0:16:09:96 Pamela D Wilson: Have an in-home caregiver exercise with your parent and take your parent for walks. If the goal is staying home instead of putting a parent into a nursing home, many things can be done.  But—all of these things take time and attention to detail. If you want to keep an aging parent at home and are interested in what it really takes to avoid putting a parent into a nursing home, visit my website pameladwilson.com.

0:16:38:46 Pamela D Wilson: Click on the How I Help tab, next the dropdown for Family Caregiver Support, and then Support Caring for Elderly Parents Online Couse. In this online course, I take caregivers and aging adults through the systems and processes that I used when I managed the care of my clients. Many of whom were in a situation where they could not have stayed home without 24-hour care seven days a week.

0:17:05:94 Pamela D Wilson: If your parents want to stay at home and they or your family can afford to hire a caregiver to supplement family caregiver time, this represents a bridge that can delay putting a parent into a nursing home. In all caregiving situations, and the earlier, the better, I recommend having conversations about what happens when mom or dad need more care, and the family can’t provide all of the care?

0:17:34:50 Pamela D Wilson: This is a reasonable and practical conversation to have with people living longer and those in poor health being more likely to outlive their money. If you are a caregiver and you haven’t had this discussion, there’s no time like the present. When you bring up the subject, be careful NOT to make promises you can’t keep about not putting a parent into a nursing home.

0:18:02:14 Pamela D Wilson: The nursing homes that your parent may remember may be very different from the nursing homes of today. Before you have this conversation, I recommend contacting a couple of nursing homes and making an appointment to take a tour. It’s best to have some experience of what a nursing home looks like before you talk to your parent. See a room, visit the dining room, talk to the residents.

0:18:26:80 Pamela D Wilson: This way, when your parent says, “you have no idea what a nursing home is like,” you can say, “yes I do. I visited a couple of nursing homes before bringing up this topic with you.” When you visit, ask for the nursing home brochure so that you can look at the daily rates and prepare to be shocked. On average, the room rate for a nursing home in the United States, which differs by the state, is between $175 and up to $400 or $500 per day.

0:19:02:66 Pamela D Wilson: Translate this daily cost into a monthly cost and you are looking at $5,000 to $15,000 a month with the median around $10,000. Unless parents purchased a long-term care insurance policy that covers nursing home care, most older adults can’t afford this type of monthly payment. And if they can afford it, not for very long. When we look at cost, caregiver exhaustion and burnout, and the idea of putting a parent into a nursing home, we arrive at the big G for guilt.

0:19:41:98 Pamela D Wilson: The caregiver is feeling worn out may not be doing a good job of taking care of a parent due to burnout and health issues. Now there is a financial hurdle that has to be met to give the caregiver relief and to make sure mom or dad receive care. In many cases, this combination is enough to put a caregiver on edge because applying and having a parent accepted into a state Medicaid program can be complicated and take a lot of time.

0:20:14:42 Pamela D Wilson: Months in some cases. Putting a parent into a nursing home has many factors that families don’t plan for and don’t expect. Many nursing homes have waitlists for Medicaid beds. These concerns are why talking about money and creating a care plan for an aging parent, or a spouse are critical components of avoiding unexpected and shocking surprises about caring for parents and putting a parent into a nursing home.

0:20:47:66 Pamela D Wilson: If you’d like help with care planning for an elderly parent or have questions about making plans and the steps necessary for putting a parent into a nursing home, I can help. I offer one-to-one elder care consultations by telephone or virtual appointment. Information is on my website pameladwilson.com. Click on how I help, then family caregiver support, then elder care consultation where you can send me a message to request a call.

0:21:15:07 Pamela D Wilson: During the twenty years that I managed the care for clients and was a court-appointed guardian and power of attorney, I had to decide to put my clients in nursing homes when their care needs exceeded what could be provided in the home or an assisted living or memory care community. Putting a parent into a nursing home is not an easy decision.

0:21:41:59 Pamela D Wilson: It was never a decision that I took lightly for my clients. However, it is possible to learn how to make sure an elderly parent gets the best care possible. Help on nursing homes and many other caregiving topics are on my website in my caregiving library and my online elder care courses Stay at Home and How to Get Guardianship of a Parent. My YouTube channel features hundreds of videos about caregiving topics. You can also follow me on social media.

0:22:12:76 Pamela D Wilson: On Facebook, I’m @pameladwilsoncaregivingexpert, on Twitter @caregivingspeak, Instagram @wilsonpamelad, and Linked In @pameladwilsoncaregiverexpert. Up next, an interview with Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris. We will talk about how cultural differences in families affect caregiving relationships and the decisions a family might make about putting a parent into a nursing home. I’m Pamela D Wilson, caregiving expert, caregiving speaker, and elder care consultant with you on The Caring Generation. Stay with me. I”ll be right back.

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0:23:19:46 Pamela D Wilson:  This is Pamela D Wilson on The Caring Generation program for caregivers and adults. Whether you are twenty or 100 years old, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. Visit my website PamelaDWilson.

We are back to talk about caregiving and family relationships that can be affected by family background and culture. You’re about to meet Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris. Dr. Holst thank you so much for joining me today.

0:23:55:43 Dr. Marissa Holst: Thank you for having me.

0:23:00:00 Pamela D Wilson: So, I want to talk about your work and wondering if you can share the contrast between Western and Eastern cultures and how this affects relationships.

0:24:12:00 Dr. Marissa Holst: Yes, sure. So culture is one factor that can have a huge impact on how people think and behave. Individualistic cultures are those that stress the needs of the individual over the needs of the group as a whole. In this type of culture, people are seen as independent and autonomous. Social preferences tend to be dictated by the attitudes and preferences of individuals.

0:24:00:00 Dr. Marissa Holst: So with that in mind, cultures in North America, Western Europe tend to be more individualistic. Collectivistic cultures, on the other hand, tend to express the importance of the group and social cooperation. When people in collectivistic cultures face hardship or difficulties, they tend to be more likely to turn to family and community for support. Collectivistic cultures can traditionally be found in places like Africa, Asia, South America.

0:24:30:00 Dr. Marissa Holst: When I talk about culture with my students I often draw from Bronfenbrenner’s Ecological System Series which I promise sounds more complicated than it is. The theory just basically states that to understand someone’s behavior, their development, you name it, we must consider the complex system of relationships affected by multiple levels of the surrounding environment. From the immediate setting of family and work to more broader things like cultural values, laws, customs, you name it. So with that in mind, culture is just one piece of a very large complicated puzzle that is the human experience.

0:25:46:85 Pamela D Wilson:  And here in the United States, I’ve been reading a lot about this, in prior years, immigrants to the United States were mainly from Europe. Research is saying that by 2030, immigration from Latin America, Asia, and Africa is going to be more prominent. So how might that idea of acculturation increase family differences, family conflicts specifically about caregiving responsibilities?

0:26:15:54 Dr. Marissa Holst: Oh, this is such an important question. So short answer, I guess. Yes, cultural narratives can definitely increase interfamilial conflicts. But we also have to zoom back a little bit. So taking care of aging family members is one of the most stressful experiences that we can engage in as humans. This can be seen in simple conversations with people who are caregiving, but also within the literature.  The CDC has reported that caregivers experience super high levels of depression, anxiety, higher use of psychoactive medications, and an increased risk of early death all leads to the stress of the experience.  So when you layer the stress of caregiving on top of probable financial hardships, on top of generational differences due to both age and culture, we can see a lot of room for conflicts to flourish.

0:27:04:85 Pamela D Wilson: I have groups where I talk to caregivers from all over the world and they share a lot of their experiences. And some of them don’t realize, it may be a caregiver from India today commenting or someone from Africa. How can caregivers in groups be more culturally sensitive to the fact that someone else may have a totally different perspective about caregiving?

0:27:30:13 Dr. Marissa Holst: I think this question is so important. I’m really passionate about this one. So, for practitioners and professional caregivers there are several researchers working on stuff related to building multi-cultural competencies. That’s the language you tend to see in the literature surrounding this question. So this includes Karen Friedrichs Goldstein out of the University Washington Seattle, I believe, and Charlene Webikamigad (now Carson) out of the School of Rural Health in Northern Ontario  School of Medicine. So for practitioners, I always say it’s really great to pull from work related to therapies and counseling for insight about how to be more multiculturally competent.

0:28:10:25 Dr. Marissa Holst:  But I think what you are kind of asking about is kind of how we as family caregivers, as people, as human beings, can be better t engaging with our families and how we can respond more effectively especially in times of conflict potentially surrounding differences in culture. And that’s not an easy question to answer. As anyone with a family can likely attest, I personally think that it requires a great deal of dedication to personal worth and the development of active listening skills.

0:28:43:97 Marissa Holst: I would also argue a certain level of openness and vulnerability are required. So what aging people are going through is hugely transformative and sometimes that can be stressful. I think we can all attest how scary change can feel and so often to negate conflict, to understand conflict, to resolve conflict, the best thing to do is just to sit back and listen. I’m a huge fan of Dr. Brene Brown’s work and think a great deal of it can be utilized in family caregiving situations even though that’s not necessarily what she designed it for.  She often states that we have to be just as passionate about listening as we are about wanting to be heard. And I think this particular bit of advice carries over into many difficult conversations caregiving included. I think there’s a lot to be said about knowing yourself, knowing your limits, and having heard a basic understanding of where your boundaries are when there is—differences or conflicts with regards to anything let alone cultural differences.

0:28:30:00 Pamela D Wilson: Well and I think the point that you bring up about boundaries is important because so many caregivers feel like they have to do everything and they can never say no and so that I think adds to all the stress that you’re talking about.

0:29:00:00 Dr. Marissa Holst: 100%

0: 29:04:00 Pamela D Wilson: And so overall, how do relationships change between adult children and their parents. When their parents first raised them and now it’s kind of the opposite where the parents need more help. How does that—what does that change look like?

0:30:14:23 Dr. Marissa Holst: They can change a lot actually. A really good friend of mine often says that family caregiving is reactive and not proactive. Meaning that you don’t know what you’ll need until you’re right in the middle of it. Even if you are a family with a plan, so to speak, people and situations change. They vary. So with that in mind, change can and often does cause conflict. Keep in mind this isn’t the case for all families. Some families actually build closer relationships through caregiving activities.

0:30:59:97 Dr. Marissa Holst: However what we know is that these are likely families that had strong communication skills, high levels of closeness, low levels of conflict, prior to the need for care arising. Families that were maybe highly conflictual and less close early on likely will experience more negativity when caregiving is added into the equation. So simply, if your family, your relationship with your parents was close and connected when you were children. It likely will remain that way as you get older and as your parents get older.

0:31:33:83 Dr. Marissa Holst: If your family struggled with communication and closeness when you were children. It will likely continue to do so. Now I’m not saying this is the end all be all. If a family is dedicated to fixing and changing things there can be ways around some of these bumps, you know bumps in the road, right? But that’s generally what we tend to see and it’s in the literature.

0:31:58:28 Pamela D Wilson: Well and I think you make a good point, just because we may not get along with our parents when we’re young if we want to work at it—and our parent also needs to want to work at it, we can change that when we’re older.

0:32:11:62 Dr. Marissa Holst: Yes, dedication to that sort of change mindset is really important if you do want to see the change from all parts.

0:32:13:56 Pamela D Wilson: I have a lot of brothers and sisters in my groups and they look at their parents differently and I can understand that because parents have different relationships with children. But one sibling usually takes on all the work and it’s their belief that other siblings refuse or don’t want to help. In many cases this is the reality but how? Let’s say there’s six kids in a family. How can they all have such different views of responsibilities to parents and relationships and all of that?

0:32:52:75 Dr. Marissa Holst: I guess my immediate response to that is how many hours do you have? [chuckle] This is a huge question. Short answer. So many things, right? It kinds of pulls it back to that model I answered in the first question the Bronfenbrenner’s model, right? Individual personalities are different. Temperaments add into this equation. The individual parent-child relationships or how that parent treated their individual children. The relationship of the parents. Are they married, not married? Was their marriage happy? Was it conflictual? Did it end in divorce? The financials of that family, right?

0:33:28:43 Dr. Marissa Holst: Were they more affluent? Were they low income? What was sort of the breakdown of who was working and who wasn’t? Was there resentment about that? The individual impact of trauma and experience for those children. Everybody experiences different things in life. Right? And so that impacts the lens through which we behave. Right? The way in which we see and have a relationship with siblings. I know that myself and my sister are very different people and that does impact the way that we engage with our parents as well.

0:34:04:43 Dr. Marissa Holst: So there’s so many reasons, that siblings see care differently. And that’s impacted but culture as well. Certain cultures, specifically Latinx cultures have very gendered approaches to care and what that looks like in a family home as well. So short answer, I guess I would say so many, many things.

0:34:27:05 Pamela D Wilson: Well, and let’s talk more about that culture. So when we began we were talking about individualist cultures versus collectivism and I think more of what we’re seeing as the cultures coming into the United States are more of the collective cultures. So how might this change just really the face of caregiving, and caring for parents, and keeping parents at home versus putting them in care communities. What do you think is going to happen in the next five, ten, years if you had a crystal ball?

0: 34:54:64 Dr. Marissa Holst: All right. So what we know is that individuals from collectivistic backgrounds are more likely to reside in multigenerational homes. Meaning that more than one generation resides in the home at one time.  But with that, these families seem more likely to keep aging family members in their homes. But culture is not the only reason for that. Things like systemic racism and economic disparity also influence that decision as well.

0:35:23:28 Dr. Marissa Holst: So in the past, these families couldn’t afford to put their family members in long-term care which was—had been more of the U.S. trend at that point. Today communities of color are making more money and do have more opportunities. Despite those leaps, I do want to point out that disparity and racism are very much alive and well and continue to severely affect these communities.

0:35:46:31 Dr. Marissa Holst: There are more opportunities and jobs in other places making it so families do a lot more, moving around in pursuit of those opportunities. In some cases, in some ways forcing them to embrace more individualist ideas despite coming from collectivistic backgrounds. With that, we are seeing more BIPOC or black indigenous people of color ending up in long-term care situations. Which comes with its own challenges for these communities.

0:36:13:25 Dr. Marissa Holst: Costs, safety, all of those things. So however this care trend—I want to point out that the care trends in general in this country are flipping back to more home and palliative care methods. So, in summary, our world has never seen so many older adults living at one time. It’s truly unprecedented. Our system just really needs to change on a large scale to meet the needs of our entire aging population.

0:36:40:37 Pamela D Wilson: Dr. Holst, I thank you so much for joining me and I thank you for all the work you do and for your interest in this topic it’s so appreciated.

0:36:46:56 Dr. Marissa Holst: Thank you so much for having me, Pamela.

0:32:19:18  Pamela D Wilson: We are off to a break. This is Pamela D. Wilson, caregiving expert, speaker, and elder care consultant on The Caring Generation. If you are looking for hope, help, or support for an aging or caregiving challenges, I can help. Visit my website PamelaDWilson.com and take my caregiver survey or contact me to schedule a one-to-one elder care consultation. Stay with me. I” ll be right back.

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0:37:40:63 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, and elder care consultant on The Caring Generation. If you are an aging adult or a caregiver not sure what to do or how to plan for care, my website PamelaDWilson.com offers resources for caregivers. Check out my caregiving library, my Caring for Aging Parents blog, listen to all of The Caring Generation podcasts, read the show transcripts, watch videos, and check out my online elder care courses. There’s something for everyone at PamelaDWilson.com

0:38:15:51 Pamela D Wilson: Let’s return to our conversation about putting a parent into a nursing home. Before the discussion with Dr. Marissa Holst, we talked about exhausted caregivers and the added complexity of the cost of nursing home care. If there is a concern that parents will outlive their financial resources, talking about and planning for Medicaid is essential. Not waiting until the last minute is critical.

0:38:43:55 Pamela D Wilson: As we talked, submitting and receiving approval for state Medicaid can take months. Then you have the added complication of finding the right nursing home and placing a parent on a waitlist that can be months or, in some cases, longer. All the while, the caregiver keeps going day to day to make sure a parent receives care. Let’s talk about aspects of being a caregiver that tips the scale for an adult child or a spouse considering putting a parent into a nursing home.

0:39:19:28 Pamela D Wilson: Let’s begin with dementia since, as we discussed, about half of the elderly living in nursing homes have a diagnosis of dementia. As care needs progress for an aging parent or a spouse with dementia, physical and emotional care needs can increase. On the physical side, safety can be an issue if the caregiver is providing hands-on care or physically having to lift or assist a parent with walking or any movement.

0:39:50:39 Pamela D Wilson: In these situations, both the parent, spouse, and caregiver can become seriously injured. On the topic of safety for a person with dementia, concern exists about wandering out of the home and becoming lost or coming to harm. Not all persons diagnosed with memory loss wander. Let’s talk about other concerns about parents who are unable to care for themselves and who may need a nursing home level of care.

0:40:22:71 Pamela D Wilson: Are you an adult child who is providing all of the care for your parent? If you did not provide the amount and type of care that you are providing, would your parents be able to remain living in their home safely? Caregivers contact me to share their frustrations about parents who need nursing home care but who refuse to move to a nursing home. This concern by parents is understandable. They want to stay in their home as long as possible.

0:40:56:07 Pamela D Wilson: However what part is a caregiver who is helping too much playing in this decision by parents not to face responsibility or make decisions about their care? Is the care that you as a caregiver are providing—that by the way is making you feel exhausted, negatively affecting your health, your career, your family, and social relationships—is that allowing your parents to stay home instead of moving to a nursing home? If you took back your life—like many of you tell me that you want to do—what would happen?

0:41:37:54 Pamela D Wilson: Would your parent then be faced with making a decision about how to remain in the home day to day by paying for outside services or moving to a nursing home? I understand the idea of taking back your life is scary because you’re afraid of the effect on the life of your parent. This is the question that few caregivers think about when first taking responsibility for the care of a parent.

0:42:05:64 Pamela D Wilson: Did you ever ask yourself, am I taking away the opportunity for my parents to learn from this experience by helping them become aware of the aspects of planning and paying for care? Do caregivers shelter aging parents from the realities of life when care is needed by taking on all of these burdens and never speaking up about the stress or negative effects on the life of the caregiver? These are big questions to consider.

0:342:40:96 Pamela D Wilson: On the other hand, you may have a parent with dementia or Alzheimer’s who is still living independently at home but alone. In this case, it is your responsibility to ensure that your parent is safe from wandering and other potential issues. In addition to wandering being a reason for putting a parent into a nursing home, there are other safety issues for concern. Forgetting to turn off a faucet and the house flooding, forgetting to turn off the stove, an oven, a toaster, and a house fire starting.

0:43:19:98 Pamela D Wilson: Or a parent who frequently grilled outdoors, and turning on the grill may result in an explosion or serious burns. Other examples. Falling down the steps. Getting locked out of the house. There are many things that can happen when memory is faulty. Even when memory is not faulty, issues can occur. I know a man who did not have memory loss but who was older. He lived alone and had caregivers who visited in the morning and evening for breakfast and dinner and medication reminding.

0:43:55:84 Pamela D Wilson: One day he decided to take a hot bath and poured the water so hot into the tub that it scalded his body. He was unable to get out of the bathtub. The caregiver found him. When he was taken to the hospital, he had burns over 90% of his body, and he died.  An inability of a parent to care for him or herself are significant concerns. If a parent is mentally capable, mom or dad have the right to make what you might see as bad decisions.

0:44:30:32 Pamela D Wilson: The question is—are you helping them to make these decisions by helping too much? Are you noticing safety risks and saying nothing? Let’s take this topic a little further and discuss hands-on care provided by caregivers when a parent is incontinent. Reminders and hands-on care might include reminders to use the toilet and changing of incontinence brief like Depends.  Some parents or a spouse may experience urinary retention and may have a catheter.

0:45:05:71 Pamela D Wilson:  Care around the topic of incontinence is critical due to the possibility of urinary tract infections and the associated mental confusion that occurs in addition to skin wounds. Urinary tract infections also result in falls. Cleaning and washing—it’s important to avoid infections and the possibility of an open skin wound that can quickly turn serious and deadly. In addition to daytime care, time in bed can result in wet sheeting and the bed having to be changed several times a day or during the night.

0:45:46:54 Pamela D Wilson: The caregiver can feel like he or she is constantly doing laundry. Padding may need to be placed throughout the house on chairs and the couch to avoid soiled furniture. Additionally, some parents may resist going to use the bathroom or having soiled clothing changed. The ongoing work related to incontinence care is another reason for putting a parent into a nursing home. Care refusals can be another reason.

0:46:19:71 Pamela D Wilson: Let’s say that you have an elderly parent who refuses to bathe, change clothing when there is an incontinence episode, refuses to take medications, or refuses participate in any type of care that is necessary for their safety and welfare. You do your best to encourage a parent or a spouse to cooperate, and you become physically injured because your parent did not want to cooperate. Your parent or spouse hit you, bit you, scratched you, pulled your hair, or may have even pushed you to the ground.

0:47:01:92 Pamela D Wilson: These behaviors are common. The behaviors of dementia can be unexpected, intimidating, and very threatening, and harmful to caregivers Dementia behaviors are another reason for putting a parent into a nursing home. When the health of a parent who has multiple chronic diseases cannot be managed well at home, and the parent experiences frequent hospitalizations, putting a parent into a nursing home may be the best solution

0:47:36:17 Pamela D Wilson: Imagine a caregiver providing incontinence care around the clock, dealing with a parent who refuses care, trying to get a parent to take medications, or accept an insulin injection, or even eat. How many of you caregivers experience this on a day-to-day basis? I know many caregivers who do. These feelings of trying to care for a parent who seems not to want care can be exasperating. Add to this a parent or a spouse who is verbally abusive or physically abusive and you have a caregiving situation that is like a ticking bomb. The parent refuses care. The caregiver may appear to be neglectful or forgets to give a medication that results in a hospital stay.

0:48:30:17 Pamela D Wilson: The hospital staff is suspicious. They contact the police because they fear that the caregiver is abusing the parent. All the while, the caregiver was trying to do her or his best but didn’t know how to resolve the situation. Now, the caregiver is suspected of elder abuse, and the police and county social services become involved. Families come to me in these situations with anger that the county becomes involved. The county is involved because the family appears to be incapable or unwilling to manage the care situation.

0:49:11:61 Pamela D Wilson: If you’re in this type of situation, I can help you learn how to take control of the situation and work with adult protective services so that you can keep your parent at home or can make a different decision. It is up to you. Very important—long before you get to this stage, make a plan to care for a parent or a spouse, including talking about putting a parent into a nursing home when the appropriate care cannot be provided, or when the caregiver is exhausted.

0:49:46:43 Pamela D Wilson: If you are feeling trapped caring for an elderly parent or spouse, not sure what to do or how to plan to for care needs or your situation is simply going off track, out of control, contact me. Help is on my website in my online articles, online caregiver courses, videos, and elder care consultations. If you are a caregiver and caregiving responsibilities are affecting your ability to work, share my website PamelaDWilson.com with your human resources manager or the decision-maker in your company and ask for caregiver support programs. I’d be happy to talk with them.  Stay with me. This is Pamela D Wilson on The Caring Generation, I’ll be right back.

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0:51:01:74 Pamela D Wilson: I’m Pamela D Wilson, caregiving expert, caregiving speaker, and elder care consultant on The Caring Generation, focusing on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, and everything in between. Please invite your family and friends to join us every Wednesday. It’s easy to install the app on the cellphone of a parent, brother, sister, or friend and invite them to listen. You can find the show on Apple, Google, I Heart Radio, JioSaavn, Spreaker, Amazon Music, Pandora, Podchaser, Stitcher, Spotify, and Vurbl.

0:51:38:74 Pamela D Wilson: Let’s wrap up our conversation about putting a parent into a nursing home by talking about two more thoughts that may help you realize that this may be the best decision for everyone. The first is to acknowledge all that you have done to help your parent or a spouse remain independent and at home. Becoming a caregiver is often an unexpected role.

0:52:05:81 Pamela D Wilson: There’s no training unless you join a caregiver support group, take an online course, or pursue education on your own. Without your help, your loved one would have been living in a nursing home or another type of care home years before now. You did and you are doing a good job. No one can take that from you. Be proud of your efforts and know that caregiving isn’t over after putting a parent into a nursing home.

0:52:36:44 Pamela D Wilson: To make sure your parent receives good care you will still be involved. Last but not least, realize that you did not cause the illness or the declines that your parents are experiencing. Nor can you heal your parent or convince your parent to do things that they don’t want to do. You can’t convince your parent to do things that might help maintain or improve their health issues. We all have a choice and free will to do what we want or what we think is best. Here is the one thing you can do.

0:53:13:95 Pamela D Wilson: Start taking better care of yourself today.  No matter your health situation, you have an opportunity to learn and take action to avoid being in a similar health position as your aging parent or a spouse. Look back on all that you have learned from this caregiving experience and apply it to yourself, your health, your life. Apply the learning to your relationships with your children, your brothers, and sisters.

0:44:30:00 Pamela D Wilson: The behaviors and health habits that you can model for your children can help if and when the time comes that you need care. You can also talk today to make the plan that we talked to have with your elderly parents. You can be aware of what can happen if you wait too long to talk about nursing home or community care. Have those conversations today for yourself. With your children. Realize what happens if you don’t talk about money to pay for care or don’t talk about the possibility of Medicaid planning. Use the experiences that you gained to make caregiving easier for the next generation. For your children. For your grandchildren.

0:54:39:65 Pamela D Wilson: Pamela D Wilson: I thank you so much for joining me on this episode of The Caring Generation – the only program of its kind connecting caregivers and aging adults worldwide to talk about caregiving, health, and everything in between. I am Pamela D. Wilson, caregiving expert, advocate, and speaker. Thank you all for being caregivers and aging adults interested in a better life about caregiving and health. I look forward to being with you again soon. God bless you all. Sleep well tonight. Get in that seven to eight hours of sleep that you need. Have a fabulous day tomorrow and a great week until we are here together again.

0:55:20:76 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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©2021 Pamela D. Wilson All Rights Reserved

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.

Check Out Podcast Replays of The Caring Generation® Radio Program for Caregivers and Aging Adults HERE

Pamela D. Wilson, MS, BS/BA, CG, CSA is an international caregiving expert, advocate, and speaker. More than 20 years of experience as a direct service provider in the roles of a court-appointed guardian, power of attorney, and care manager led to programs supporting family caregivers and aging adults who want to be proactive about health, well-being, and caregiving. Wilson provides online and on-site education and caregiver support for caregivers, consumer groups, and corporations worldwide. She may be reached at +1 303-810-1816 or through her website.

 

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