Scary Truth About Guardianship – The Caring Generation®
The Caring Generation® – Episode 73 February 17, 2020. On this caregiving podcast, Pamela D Wilson caregiving expert shares the scary truth about guardianship and the duties of a guardian for the elderly diagnosed with dementia or a mental health disorder. While adult children may be interested in being a legal guardian for the elderly, many lack an understanding of what it really takes to be a guardian for a parent. Wilson shares an interview with Dr. Randy Frost about hoarding. Is hoarding a learned habit or does it relate to something else?
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Scary Truth About Guardianship: The Duties of a Guardian for the Elderly
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.
0:00:38:00 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 seems that when the time comes when we need care, or we become a caregiver, our world is turned upside down – there is little dignity, little clarity, and certainly no stability.
0:01:08:07 Pamela D Wilson: Let’s be honest, most of us prefer life without change. 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. 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. We’re here to create The Caring Generation. Please invite your loved ones, family, and friends to listen to the show each week.
0:01:42:73 Pamela D Wilson: On this show, we’re talking about the duties of a guardian for the elderly. Situations that family guardians find themselves in that reveal the scary truth about guardianship. Guardianship is a legal process through the court system—that gives a family member or a professional the legal responsibility of care for an adult. Most of the time all goes well. However, there are times when the duties of a guardian for the elderly become all-consuming or emotionally exhausting because of outside circumstances or situations.
0:02:25:85 Pamela D Wilson: Adult children ask me if becoming a guardian for a parent is a good thing to do. If you love your parent, the duties of a guardian for the elderly can be a wonderful experience though not without complications. During this program, I’ll share the scary truth about guardianship so that if you are considering becoming a guardian, you are aware of some of the most unusual and the most common situations that happen so that you can avoid surprises.
0:02:59:69 Pamela D Wilson: These situations also apply to all caregiving situations to some degree. Even if guardianship is not a topic within your family, you can gain insight from this discussion of challenging situations. On the topic of challenging situations. How many of you are familiar with hoarding? Later in the program, I’ll share a conversation with Dr. Randy Frost, a hoarding expert. Why do some people become more attached to things than others?
0:03:31:56 Pamela D Wilson: Let’s start with the duties of a guardian for the elderly and the scary truth about guardianship. The act of moving an elderly parent to a care community can result in a lot of guilt for the caregiver guardian even when a move may be necessary. There comes a point when an elderly parent diagnosed with dementia eventually needs more hands-on care than a guardian or family members can provide. Supervision may be needed 24 hours a day. A need for full-time care can be complicated to manage for adult children who work part or full time or who are responsible for managing a household and children.
0:04:16:95 Pamela D Wilson: For those of you caring for a loved one with memory loss, you know that daytime and nighttime can become reversed. Your parent is awake all night when it’s sleepy time, and sleeping all day when most people are awake. Caregivers of persons with dementia become experts in sleep deprivation. This scary truth about guardianship—about having to decide to move a parent to a care community when the parent wants to stay home– can be guilt and anxiety-filled.
0:04:53:52 Pamela D Wilson: How do you make this move when a parent can’t mentally understand the reason for the move? As a guardian, you make the decision, and you make it happen. As a guardian, I decided and moved many of my clients from their homes to a care community when the time came. If you care for an elderly parent with dementia, you know that any change in routine or location can turn the world of your parent upside down.
0:05:21:61 Pamela D Wilson: Increased anxiety, worry, pacing, repetitive behavior, crying, fear, and a host of other negative reactions make you feel horrible for deciding to move a parent which is part of the responsibilities and duties of a guardian for the elderly. I know—my saying this may not help you feel better. Making difficult decisions can be part of the duties of a guardian for the elderly. The best-case scenario is to focus on making the best of the situation. In a community move scenario, let’s talk about things that go wrong that you never expected.
0:06:02:20 Pamela D Wilson: Your parent, who was active and interested has become withdrawn—is not initiating any activity without significant help or reminders from care staff. I am very familiar with this scenario. The scary truth about guardianship is that you have to decide IF this is part of the progression of dementia. If this behavior is normal for a parent, or if there is something out of the ordinary contributing to this change.
0:06:36:47 Pamela D Wilson: You may hear things from the care staff in a community, like “oh, these things happen—your mom or dad is arriving at a new stage and may never be the same, ” or all old people get depressed. Most elderly who live here are depressed.” Can you believe care staff would say that and not think how their actions might contribute to the depression of residents? Part of the duties of a guardian for the elderly is to know your parent better than anyone else.
0:07:05:31 Pamela D Wilson: Depending on what you know about your parent—their past behaviors, life-patterns, and wishes for care, can guide your actions. As yourself, what are the options? Look at the facts. Before the move, your parent was doing everything for him or herself – dressing, eating, walking, participating in activities. Swoosh—a move happened—resulting in a total behavior change. Options: consider an evaluation for depression and treatment.
0:07:36:48 Pamela D Wilson: My opinion. There are too many depressed older adults in care communities because the staff has become apathetic, believing that this is the way older people behave. Staff mistakenly believe that nothing can be done. Not always true. I had clients who were active and became apathetic. They refused to get out of bed, to get dressed, they lost interest in eating. Because I knew the clients, I advocated for treating the depression.
0:08:06:00 Pamela D Wilson: The light switch that turned off and resulted in apathy— within a few weeks of medication treatment lit back up. My clients returned to performing everyday activities. Responding to these concerns is time-sensitive. If a sudden change in behaviors happens, the duties of a guardian for the elderly is to take action and to advocate. The scary truth about guardianship is that if you don’t act—your non-action could result in a steeper and unnecessary health decline or a quicker path to death.
0:08:44:18 Pamela D Wilson: The even scarier truth about guardianship—emotionally exhausted and angry family guardians who place parents in a care community and rarely show up. More on the duties of a guardian for the elderly and the scary truth about guardianship after this break, I’m Pamela D Wilson on the Caring Generation. Stay with me. I’ll be right back.
0:09:40:002 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. If you’re seeking support to avoid unexpected caregiving issues, 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. More help for caregivers is also in my book, The Caregiving Trap: Solutions for Life’s Unexpected Changes. Information about online courses for elderly care and my caregiver book are on my website PamelaDWilson.com.
0:10:11:89 Pamela D Wilson: Let’s continue our conversation about duties of a guardian for the elderly and the scary truth about guardianship relative to moving an elderly parent to a care community. When a total change in ability or behavior occurs, consider the possibility of an unidentified medical issue. The go-to issue for individuals with dementia is a urinary tract infection, which can cause serious issues like mental confusion, falls, and sepsis a severe infection.
0:10:46:89 Pamela D Wilson: Have your parent checked out by a doctor. Next on the list after eliminating depression and a medical concern —if possible—hire a caregiver. The staff working in memory care units or care communities are not time budgeted to devote more than a couple of hours a day to the care of your parent. Let’s be honest a total change in a living situation may have your elderly parent with memory loss trying to make sense of this new and unfamiliar world. Imagine having amnesia.
0:11:22:47 Pamela D Wilson: Every day you wake up and start all over again. Think of the movie Groundhog Day with Bill Murray, except you don’t realize you are starting over again every day in the same place. Or watch the movie or the movie 50 First Dates with Adam Sandler. If you’re looking for a little humor or distraction, both of these movies will put a smile on your face. Hiring a caregiver experienced in Alzheimer’s care can help your parent who may need a little hands-on, one-to-one care to return to a more normal routine. Direct the caregiver to encourage your parent to perform activities instead of doing activities for your parent.
0:12:08:09 Pamela D Wilson: For example, rather than dressing your parent—encouraging your parent to dress him or herself. Rather than reading to your parent, encouraging your parent to read to the caregiver. Dementia and Alzheimer’s are brain diseases. If your parent stops performing activities, they become lost skills forever. The only exception to this—music memory. Singing remains after many other skills and abilities fade.
0:12:45:97 Pamela D Wilson: Research confirms that singing and listening to music remains a pleasant activity for a parent with memory loss if mom or dad enjoyed music. The next scary truth about guardianship—is the potential for neglect. Neglect can be difficult to identify if you don’t visit your parent frequently. How to watch for signs that a parent may be neglected by care staff? If you have a caregiver visiting, ask the caregiver to serve as an additional set of eyes and ears. Is your parent dressed in clean clothes—including dry Depends?
0:13:29:82 Pamela D Wilson: Are there any bruises or skin tears, or skin wounds from being left sitting too long? Is your parent’s weight stable or is mom or dad losing weight? Are there frequent urinary tract infections? If yes, this can indicate poor hygiene by the care staff or a parent sitting in soiled Depends for hours. Is there any change in the activity level of your parent? I once arrived to find one of my clients sitting in the community dining room alone with a full plate of food sitting in front of her.
0:14:20:46 Pamela D Wilson: My client would eat her entire meal if someone sat with her and talked and prompted her to eat. She would not eat if she were left alone. After discovering this scary truth about guardianship concern, I investigated other potential areas of neglect. The community was understaffed. Staff did not have the time to give to residents who needed more hands-on attention and time. As the guardian, I exercised the duties of a guardian for the elderly.
0:14:44:79 Pamela D Wilson: I moved my client to a different community where she did very well. Staff in care communities—who are trained can make a positive difference in a parent’s life with memory loss. The next scary truth about guardianship. Untrained care staff can be your worst nightmare. Staff who are untrained can create an unpleasant environment that can push your elderly parent to exhibit behaviors. What happens next?
0:15:16:17 Pamela D Wilson: The care community asks you to do something about your parent’s behaviors, or inform you that your parent will have to move to another care community. A change in behaviors can occur without staff involvement. The duties of a guardian for the elderly include monitoring minor behaviors that can quickly become increasingly serious—and doing something about the behaviors.
0:15:43:81 Pamela D Wilson: The scary truth about guardianship is that finding a psychiatrist or a geriatric psychiatrist or a geriatrician skilled, willing, and available to examine and treat your parent by prescribing medications can be like finding a needle in a haystack. Some doctors will scare you by talking about “black box warnings” and side effects. Yes, these exist. However, a good geriatric psychiatrist or a geriatric pharmacist can discuss the risks and benefits with you. The duties of a guardian for the elderly includes becoming knowledgeable about medications that can treat behaviors so that your parent is calm and comfortable.
0:16:30:87 Pamela D Wilson: If you have witnessed the behaviors of an agitated, frightened, or paranoid parent—you know that feeling this way can’t feel good. Your duties as a guardian for the elderly include making sure your parent is not experiencing physical pain or emotional difficulties to the extent that you can by working with medical professionals. Let’s look at a worst-case scenario for the duties of a guardian for the elderly and the scary truth about guardianship.
0:17:03:72 Pamela D Wilson: I hope that none of you ever have to experience this. But if you do, I want you to be aware of what happens. It’s 2 a.m. You receive a call from the care community that your parent tried to escape or is exhibiting agitated behaviors at such a level that staff is concerned they might be harmed or that your mom or dad may do something to harm him or herself. The community manager called 911 staff, who arrived and put your parent on a 72-hour mental health hold.
0:17:42:25 Pamela D Wilson: Fortunately, there is a wing or a geriatric psychiatric unit at one of the local hospitals that accepted your parent for in-patient treatment. While this hospitalization may seem like a worst-case scenario in the scheme of the duties of a guardian for the elderly, it could be the best situation for your parent if behaviors have been ongoing and the current doctor was unable to prescribe the right combination of medications to level out the behaviors of your parent.
0:18:12:71 Pamela D Wilson: That is the positive. The next scary truth about guardianship is that the community where your parent lived won’t allow your mom or dad to return because of the prior behaviors. They are telling you that they can’t provide the level of care your mom or dad needs. If you weren’t stressed before, your stress level is now off the charts. You have no idea where to look for a community for your parent to live. You certainly can’t take mom or dad home with you. Know that the geropsychiatric unit may try to push you to take mom or dad home – do not.
0:18:51:16 Pamela D Wilson: The duties of a guardian for the elderly include finding the next place for a parent to live. Know that the case managers at most geriatric psychiatric units can be a significant help to identify locations. It’s up to you to visit the communities recommended to discuss suitability and a long term fit with the community manager. Also in the list of duties of a guardian for the elderly is that once your parent is on a combination of behavioral medications that work—do whatever it takes not to let anyone change those medications. Unless you have the change evaluated by a geriatric psychiatrist and give your approval.
0:19:37:75 Pamela D Wilson: Medication changes are the next scary truth about guardianship. Communities—especially skilled nursing, have internal procedures that require the reduction of medications—including behavioral medications. Nursing homes will fight you tooth and nail over medications called antipsychotics. Fight back for the good of your parent.
0:20:01:25 If you are an adult child or another family member considering guardianship of a parent or want help knowing how to manage care and work with the healthcare community, I have two online courses: How to Get Guardianship of a Parent and Taking Care of Elderly Parents available through my website PamelaDWilson.com. We’re off to a break. I’m Pamela D Wilson on The Caring Generation. Stay with me; I’ll be right back.
0:21:00:64 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert your host on The Caring Generation program for caregivers, and aging adults. If you’re looking for help having caregiving conversations in your family, download the Caring Generation show to the cellphone of a parent, sibling, or other family members. The Caring Generation podcast is on all your favorite podcast apps: Apple, Google, Pandora, IHeart Radio, Spotify, Spreaker, Stitcher, Amazon Music, Podchaser, Jio Saavn, Vurbl, and others. Let me help start caregiving conversations for you.
0:21:39:80 Pamela D Wilson: Let’s change the subject and talk about becoming attached to things. Are your parents’ houses filled with stuff that they want don’t to clear out or donate? How many of you have homes filled with stuff? Closets stuffed to the brim, basements, and spare bedrooms that you never visit because they’re so full of stuff that you can barely make a path to walk through. Why do we have such an attachment to our things?
0:22:03:53 Pamela D Wilson: What about people who carry this to an extreme? Is hoarding just a bad habit, or is it something else? Is hoarding related to mental or physical health? Listen to Dr. Randy Frost, professor of psychology at Smith College, an internationally recognized expert on obsessive-compulsive disorder and compulsive hoarding.
0:22:29:05 Pamela D Wilson: For somebody who is unfamiliar with hoarding, can you describe the appearance of a typical room in the home of a hoarder?
0:20:00:00 Dr. Randy Frost: Well, the first thing you would notice in the room of a house with someone with a hoarding problem is rooms filled with clutter. Clutter that covers every surface top so that the surfaces can’t be used for their intended purposes. That would be the most apparent thing that you would see. If you take a look closer, what you would see is an apparent disorganization with all of those things as well. It’s not like everything is well organized in covering all of the spaces, but there is a significant amount of disarray in the clutter.
0:23:08:26 Pamela D Wilson: And in your experience is hoarding – is it that somebody just picks it up, they’ve been that way all of their lives, or is it an illness?
0:23:15:83 Dr. Randy Frost: Well, it clearly is an illness. We see people with this problem beginning, oh typically between the ages of 10 and 15 years old. Now it’s not very severe at that point. It doesn’t get to be a problem until a couple of decades later, and we see a lot of pretty severe hoarding by the time people reach the fifth generation or fifth decade in life.
0:23:39:30 Pamela D Wilson: Around fifty, okay. What’s behind the inability to clean it up and throw stuff away?
0:23:45:03 Dr. Randy Frost: Well, there are a number of things behind it, and this is what makes it such a difficult disorder to treat. There are information processing deficits that these folks have. Deficits in attention. There are a lot of attention-deficit problems. Problems with categorization. Most of us live our lives categorically. That is, we organize our possessions by category. But people who tend to organize their possessions visually and spatially—so that when they get an electricity bill, they put it on the pile, and then they have to remember where it is. So, it’s like they have a three-dimensional map of this room. And so, to the rest of us, it would look like a completely disorganized mess. But to them, they have this three-dimensional map in their head. So they have a sense of where everything is. And that’s just one component of the problem.
0:24:31:33 Pamela D Wilson: I was reading some information on the website, and I read that hoarding is affected by executive function or lack of disorganization, some lack of attention, and poor decision making. We work a lot with people with dementia – are those also issues that people with dementia experience, or does one come before the next?
0:24:51:12 Dr. Randy Frost: Well, what we see in dementia is we do see some accumulation in clutter with dementia. But it’s different than the hoarding disorder or the hoarding problem. Because in hoarding, in addition to these executive function problems, we see an attachment to possessions that we don’t usually see in dementia. Now sometimes, in dementia, people are kind of attached to the way things are because they like the sameness. But with hoarding, there is an intention to use or to somehow need each of the objects people own. In dementia, typically, that’s not the case.
0:25:24:32 Pamela D Wilson: I had a client who was a hoarder, and the first time I went to her house, I was amazed. I walked in—and the whole living room—I mean, we’re talking floor to ceiling stacked with stuff. How can somebody be attached to that much stuff?
0:25:38:46 Dr. Randy Frost: Well, it’s interesting. The attachment seems to form whenever an individual possession is within their sight, and once it’s no longer in their sight, they sort of forget about it. So in part, it’s an immediacy effect that we see. So when someone is considering throwing something away, it’s always something that is in their immediate visual field. Or whenever they think about something they have, they have this feeling of need for it. But many of these items never get used. In fact, we have lots of cases where people buy things and never open them. Never ppen the package or take the tags off the clothing.
0:26:15:69 Pamela D Wilson: And why is that? They just need it?
0:26:18:84 Dr. Randy Frost: Well, in their mind, as they acquire these things. There’s this intense sense in which they need this item—and they want this item. And they feel like they can’t live without it.
0:26:29:76 Pamela D Wilson: Can you talk about the adverse effects of hoarding?
0:26:33:70 Dr. Randy Frost: Well, there are many. The first and most apparent is the inability to use the home in the way it was intended. So you can’t sit on your couch, you can’t walk through your living room. You can’t sleep on your bed. You can’t cook in your kitchen. All these things are impairments in people’s lives. But sometimes, this hoarding can get so severe that it endangers the health and safety of the individual living there as well as people living nearby. When the clutter gets so high, it might collapse on top of you or, if it were to prevent your ability to get out of the house quickly if there was a fire.
0:27:08:57 Pamela D Wilson: Is there any connection between people who have lived during the depression when items were scarce to people now who hoard that you know of.
0:27:17:46 Dr. Randy Frost: Well, that was our first hypothesis when we started doing this work a number of years ago, and so we asked questions about people’s experience with material deprivation or therein, and we found no solid evidence that that is an underlying problem. Certainly, a lot of people describe their attachment to something and needing them or somehow making up for being without. But for the most part, it doesn’t explain very many cases of hoarding.
0:27:43:57 Pamela D Wilson: And is it possible for hoarders to really understand what they’re doing and to try to change those behaviors?
0:27:50:23 Dr. Randy Frost: Well yes. There are a number of people who hoard who recognize it as a real problem. And we’ve developed a treatment program for hoarding. Acognitive-behavioral program that seems to work reasonably well in treating people with hoarding problems. So it is possible for people to get control of this. Now we can’t talk about a cure for this because we still don’t know for sure what causes it. But we can talk about a program that allows people to gain control over their home and maintain it in a way that it’s livable.
0:28:21:03 Pamela D Wilson: And talk about that treatment, what is it, and how does it work?
0:28:24:32 Dr. Randy Frost: Well, it’s a fairly comprehensive treatment. It focuses on the three main features of hoarding. The compulsive acquisition, the difficulty discarding, and the disorganization and the clutter that we see in the home. And each of those components is treated a little bit differently. Just as an example of what we do when we treat acquisition. Is we do a couple of very simple things. The first one is to get people while they’re in our office to generate a list of questions that they think they should ask themselves before they purchase something.
0:28:58:13 Dr. Randy Frost: Typically these are the things all of us do. Do I have money for it? Do I have room for it? Do I already have some of these? Then we have them put those on a piece of paper and carry them with them wherever they go, and if they want to buy something, as long as they pull out these questions and answer them, then it’s okay to buy it. And what this does is it brings the context of their life back into the decision.
0:29:20:28 Dr. Randy Frost: What we see in hoarding when people are out in an acquiring episode is that when they’re looking at something they want, they forget about the fact that they don’t have money for it, they don’t have room for it. They already have a number of these. All that information is not accessible to them in part, because of this attentional problem they’ve got.
0:29:38:20 Pamela D Wilson: If somebody comes into a program like this, is it 2 months, 6 months, a year before they see results or changes, or is it longer than that?
0:29:46:87 Dr. Randy Frost: Well, we’ve been experimenting with different kinds of ways of delivering this treatment. Our first study delivered it in 26 individual sessions over the course of about a year. Six months to a year, something like that. But since then, we’ve been working on developing self-help programs or support groups, facilitated support group programs that follow the same kind of therapeutic regimen in about half that time. So somewhere in the neighborhood of three to six months we can see a significant improvement in people’s homes
0:30:21:54 Pamela D Wilson: If you are looking for a resource for hoarding information, you can visit the International Obsessive Compulsive Disorder website at hoarding.iocdf.org. I will post a link to one of their hoarding brochures in this show transcript. The site also features a training site for professionals. Dr. Randy Frost is on the faculty.
0:30:46:41 I’m Pamela D Wilson on The Caring Generation. Visit my website PamelaDWilson.com for caregiver support in my caregiving library, online caregiver support group, book, videos, and online courses for elderly care. Stay with me; we’ll be right back.
0:31:28:54 This is Pamela D Wilson. You’re with me on The Caring Generation, giving us permission to talk about aging, the challenges of caregiving, and everything in between. Including uncomfortable topics that we would sometimes like to avoid. Listen and share all of the podcasts from The Caring Generation on your favorite apps or on my website PamelaDWilson.com. Go to the Media Tab and scroll down to The Caring Generation.
0:31:56:47 Pamela D Wilson: Let’s return to more of the scary truth about guardianship and the duties of a guardian for the elderly. How many of you are a court-appointed guardian and your family hates you because you make necessary but difficult decisions for a parent? In some situations, your parent may hate you because mom or dad is unable to understand why you do the things you do. This dislike may be complicated by your brother or sisters who were not happy that you were appointed the guardian for your parent.
0:32:31:44 Pamela D Wilson: Take this a step further. Your siblings may talk negatively about you to your parent who is unable to mentally distinguish between reality and what your brothers and sisters tell your parent. This undue influence may be emotionally distressing for your parent. In other situations, prior to the guardianship there may have been other situations of financial or emotional abuse by non-family members.
0:33:03:02 Pamela D Wilson: In my experience, these outside influencers included people from church groups who were interested in gaining access to my client’s money. In some cases, these church-going people encouraged my clients to write weekly checks to the church for large amounts. A live-in caregiver wrote herself into the will of a client and onto property like a house and a car. The duties of a guardian for the elderly include having to interact with these individuals, including difficult family members, in a positive manner.
0:33:40:61 Pamela D Wilson: The scary truth about guardianship is that being a guardian can test all of the skills you have available to you and more. You may find yourself in a court hearing, learning how to file a restraining order, or even supervising family visits or hiring someone to do this for you. While not all guardianships are complicated and challenging, some can be when relationship issues exist between adult children or a parent lived alone with no children nearby and outsiders became influential and gained access to money or isolated an older adult.
0:34:24:50 Pamela D Wilson: The scary truth about guardianship for family members is that it’s difficult to know what to expect. Caregivers face similar unexpected events. Honestly how many of us ever thought we would be a caregiver for a parent devoting the time, attention, contributing money, thinking about stalling career progress, or giving up a job to care for a parent? And then what do caregivers do?
0:34:53:42 Pamela D Wilson: Great feelings of responsibility and duty for the care of a parent—including agreeing to become a guardian happen—and you find yourself doing things that your non-caregiving self would question. The duties of a guardian for the elderly include acting in the best interest of a parent. But does this mean NOT acting in the best interest of the caregiver? As a caregiver do you continually put your needs below the needs of your elderly parents and family members?
0:35:27:19 Pamela D Wilson: What is it about caregiving that some caregivers feel that they need to sacrifice everything? Many caregivers equate the responsibility of caring for elderly parents with guilt. The scary truth about guardianship and being a caregiver is that the stress can be almost unbearable and yet family members or people who are not caregivers don’t understand the gravity of the situation. The duties of a guardian for the elderly can be compared to a full-time caregiver.
0:36:00:41 Pamela D Wilson: Caregivers feel that they can’t be away or inaccessible to the needs of a parent or someone else who needs care. If something goes wrong the caregiver is usually blamed. Many caregivers are working full time. Trying to care for their families—giving up enjoyable activities and feel that life as they know it is over. Fighting for alone time in addition to trying to keep up a positive mental attitude can feel like a daily battle.
0:36:34:58 Pamela D Wilson: Who is more important, the parent needing care or the caregiver? Or is this a question we are afraid to ask and answer. The scary truth about guardianship and caregiving is that both can go on for years, BUT caregivers, if they choose can create an exit plan. This begins with initiating caregiving discussions, setting boundaries, and time limits—which some caregivers may resist. Jumping into caregiving without a plan can result in being on an up and down rollercoaster with no end.
0:37:14:11 Pamela D Wilson: While many caregivers feel that they owe care to elderly parents for raising them—and this is a valid point. Children as they age become more independent and need less time, even though they need emotional support and guidance. Raising a child has an expectation of an end-date whether that end date is 18 or older. There is an expectation of eventual independence.
0:37:42:27 Pamela D Wilson: Accepting the responsibility of being a guardian or a caregiver moves in the opposite direction. While the goal is to support independence, independence wanes and becomes dependence, and progresses to a need for more and more assistance especially in situations of Alzheimer’s or dementia. Why does fear exist among caregivers to focus on their needs over the needs of a parent, spouse or another person?
0:38:13:19 Pamela D Wilson: Is the fear of judgment about choosing ourself as the caregiver over a parent or spouse so great that we are willing to allow our lives to be destroyed—another question that may seem extreme—unless you are in the position as a caregiver where you have given up everything and done everything for years. Let me share a story of a woman who cared for her husband for years to the detriment of her own health and her career.
0:38:44:82 Pamela D Wilson: She was the financial support for her family. Her husband had Alzheimer’s disease and was needing more hands-on care which meant that if she wanted to continue to care for him, she would have to quit her job. She was 60 he was 70. In this situation what would you do? Would you give up your job to spend all of the family’s assets on your husband’s care knowing that there may be nothing left for you?
0:39:13:96 Pamela D Wilson: Knowing that there may not be enough money to pay the monthly bills. In this situation, the woman with the support of her children chose to put her husband in a community so that she could continue to work and regain control over her life. While some may see this as stubborn, the scary truth about guardianship and the duties of a guardian for the elderly is to look at best interest.
0:39:40:77 Pamela D Wilson: What if her continued desire to be a caregiver for her husband resulted in illness or death for her? Who then would care for her husband? In other similar situations knowing that a husband or wife would not want to live “this way”—meaning needing a lot of care and being a burden to a spouse. If a guardian chooses to discontinue medications to speed along end of life is this something that you as caregiver would understand or judge as being wrong or immoral? In caregiving situations occur that we never imagine.
0:40:22:99 Pamela D Wilson: The scary truth about guardianship and the duties of a guardian for the elderly is that the decisions you make can be complicated. Not white or black—not clear cut. My best advice whether you are a guardian or a caregiver is to get help long before you find yourself in a situation of burnout where the decisions you make are based on exhaustion and not clear thinking about the best interest of the care of a parent, spouse or loved one.
:40:56:93 Pamela D Wilson: Thank you for joining me to talk about caregiving, health, and everything in between. Share The Caring Generation and my website pameladwilson.com with your family and workplace so that we can make caregiving something we talk about. The podcasts of all the shows are on your favorite podcast apps and on my website at PamelaDWilson.com. Invite your family and friends to listen each week.
0:41:22:134 Pamela D Wilson: 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 together again.
0:41:37:59 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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Show ends at 41:58:23