Wishing a Sick Parent Would Die – The Caring Generation®
The Caring Generation® – Episode 103 September 15, 2021. On this caregiving program, expert Pamela D Wilson offers insights into feelings experienced by caregivers that they hesitate to share including wishing a sick parent would die Guest Dr. Mellissa Withers Associate Professor at the Keck School Medicine shares research about EOAD – early-onset Alzheimer’s disease.
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Caregiver Confessions: Wishing a Sick Parent Would Die and Other Guilty Thoughts
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.
Confessions From Caregivers: How Caregivers Feel
Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel
0:00:36:64 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, 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.
0:01:04:70 Pamela D Wilson: You’re in exactly the right place to share stories, learn about caregiving programs and resources to help you and your loved ones plan for what’s ahead. Invite your aging parents, spouses, family, and friends to listen to the show. If you have a question or an idea for a future show, share your idea with me by responding to my social media posts on Facebook, Instagram, Twitter, or Linked In.
0:01:33:14 Pamela D Wilson: Today, we’re talking about caregiver confessions. Things that caregivers feel comfortable sharing with me and each other in online caregiver support groups or courses but not comfortable sharing with others. The things you’re about to hear may shock you if you’re not a caregiver. Statements like, “I wish a sick parent would die.” Hearing this, you might become judgmental or wonder how someone could possibly feel or think this way.
0:02:04:89 Pamela D Wilson: It can be challenging to be empathetic when you don’t fully understand the daily life of caregivers. So before you judge, spend 24 to 48 hours in the life of a caregiver you know. Offer to live with your elderly parents for a weekend or take your mom or dad for a few days to your house. Only then will you truly know why a brother, sister, mom, or dad is exhausted or burned out and wishing a sick parent or a spouse would die.
0:02:43:03 Pamela D Wilson: By sharing caregiver confessions, my goal is to share both sides of the story that are not always easy to see when you’re standing on one side or the other. If you’re a burned-out caregiver, stay tuned. I’ll share tips for what I call having a bigger perspective by being a bigger person, which you already are—whether you know it or not—because you accepted the role and responsibility of being a caregiver.
0:03:11:72 Pamela D Wilson: Throughout this program, I’ll also reference other Caring Generation episodes that go more into depth about burned-out caregivers’ experiences. The guest for this program is Dr. Mellissa Withers, an Associate Professor at the Keck School of Medicine in the Department of Population and Public Health Sciences, who joins us to talk about a rare form of early-onset Alzheimer’s disease among the Latino population.
0:03:44:76 Pamela D Wilson: So uncommonly identified, I couldn’t find any information about this type of early-onset Alzheimer’s disease on the Alzheimer’s Association website. Dr. Withers is Director of the Global Health Program of the Association of Pacific Rim Universities, a non-profit network of 60 universities in the Asia-Pacific. She received a Ph.D. from the UCLA Fielding School of Public Health with a minor in cultural anthropology.
0:04:13:93 Pamela D Wilson: She also earned a Master’s in International Health from the Johns Hopkins Bloomberg School of Public Health and a BA in international development from UC Berkeley. Dr. Withers is the editor of two books, has published more than 50 scientific articles, and serves on the editorial boards of six international global health journals. She has been working on Alzheimer’s-related research among Latinos for eight years.
0:04:44:52 Pamela D Wilson: Let’s start with why many caregivers feel unheard and unappreciated. Caregivers tell me they become frustrated when family or friends ask how they are, and the caregiver responds honestly. What happens next? People offer caregivers suggestions that may not be practical, or they praise the caregiver for being a strong person. A brother or sister may say that mom or dad seems to be doing great based on a 15-minute phone conversation or a video call.
0:05:18:31 Pamela D Wilson: The gap is that family members don’t have personal insight about the events and interactions that occur the other 23 hours and 45 minutes of every day with mom or dad or a spouse. This is an experience gap. We all have them depending on the particular context of a situation. A lack of experience or not having a full understanding of a situation, including context, offers the opportunity to be compassionate, gain empathy, and a broader understanding of a situation.
0:05:52:63 Pamela D Wilson: The challenge is that we’re all so busy. Most of the time, emotions get in the way—frustration, venting, becoming defensive, verbally attacking others, shutting down emotionally, or acting out of character. We’ve all felt or acted this way at one time or another. The opportunity is to realize when emotions go sideways and then to stop, pause and wait until the logical part of the brain catches up
0:06:22:08 Pamela D Wilson: Caregiver confession number one for I wish a sick parent would die is my loved one or family has no clue what I sacrifice to be a caregiver. True statement. Unless a family member takes over the responsibility of the primary caregiver, it’s not possible to understand the day-to-day tasks and work. Nor can one person place themselves in the mind or body of another person to experience their thoughts, mental stresses, anxieties, or health.
0:06:53:90 Pamela D Wilson: Let’s define sacrifices as trade-offs to make this easier to understand. Caregivers who give up other parts of their life, time with friends, careers, going to school, possibly delay marriages, or having children trade this time or the life events to act in the role of a caregiver. Looking at life from the inside out, caregivers watch everyone else go on with their lives that appear to be carefree.
0:07:23:26 Pamela D Wilson: Social media is one place where this happens. Posts about vacations, weekend events, and other things that the caregiver has given up can make caregivers feel even more lonely, alone, and isolated when they’re home, changing Depends and cleaning toilets. Let’s look at both sides. In some families, a son or daughter may feel culturally obligated to care for an aging parent while siblings go on with their lives.
0:07:54:03 Pamela D Wilson: Other siblings may not feel culturally obligated. In other families, the relationships between parents and children play a major role in the child who becomes the caregiver. Sometimes the primary caregiver fills that role because of proximity. Being the last child to live in the same city as the parent.
0:08:16:70 Pamela D Wilson: Whatever the culture, background, or family relationship, that caregiver is committed to being the caregiver. Making sacrifices or trade-offs is a choice. I hear many caregivers saying, “no, no, no, Pamela, not a choice. I didn’t have a choice.” Looking at this from the other side – we make choices every day even if the choices we make are difficult, not to our liking, or are things we’d rather not do.
0:08:51:37 Pamela D Wilson: Every action is a choice. Along with the choice comes taking responsibility or owning up to choosing with all the outcomes or consequences. Making and living with choices is part of growing up or adulting. The parent or spouse you take care of today made choices about their life, career, health, relationships, and they are living the consequences of these choices today, which may mean that they need you or someone to be a caregiver.
0:09:25:65 Pamela D Wilson: Wishing a sick parent would die is a common feeling for caregivers who feel stuck because of giving up parts of life to devote to the care of a parent. Being a caregiver is an individual decision. Just as caregivers don’t want to be judged for saying they wish mom or dad would die, caregivers can remove themselves from the emotional trap of feeling that they must be recognized or appreciated by family or an elderly parent.
0:09:56:93 Pamela D Wilson: Own your decisions, own your choices. If you feel that you are making sacrifices, feel unappreciated, or are not receiving any help, ask yourself what you want. Here’s an example. A caregiver said—my aunt should call and ask if I need help to care for my mom. This is another example of an experience gap. How does the aunt know that the caregiver needs help if the caregiver doesn’t ask for help.
0:10:28:71 Pamela D Wilson: How close is the relationship between the caregiver and her aunt? Has there been regular communication about health issues? Some caregivers feel like busy family members should know that they need help and offer help. The reality is that everyone is so busy with their lives that unless there is regular close contact that indicates a problem exists, it’s unlikely someone you haven’t talked to in weeks, months, or years will call out of the blue and offer help.
0:11:05:41 Pamela D Wilson: More on caregiver confessions, and I wish a sick parent would die after this break. If you are looking for help with decision-making about care for elderly parents or making a care plan for yourself, I can help. Visit my website PamelaDWilson.com and schedule an eldercare consultation. Click on How I Help, next Family Caregivers, and next Eldercare Consultation. This is Pamela Wilson, caregiving expert, author, and speaker on The Caring Generation. Stay with me; I’ll be right back.
0:12:06:95 Pamela D Wilson: This is Pamela Wilson on The Caring Generation. Help others who may be dealing with health, aging, or caregiving issues by sharing information about this show. The Caring Generation is available worldwide on your favorite podcast and music apps, including Apple, Google, I Heart Radio, JioSaavn, Spreaker, Amazon Music, Breaker, Deezer, Listen Notes, Pandora, Player FM, Pocket Casts, Podcast Addict, Podchaser, Stitcher, Spotify, Tune In, and Vurbl.
0:12:40:74 Pamela D Wilson: Before the break, we were discussing wishing a sick parent would die in the context of my loved ones or family members having no idea of what I sacrifice as a caregiver. Let’s relate this to the expectations that caregivers might have of other people. In this sequence, the question is, what does the caregiver want or expect a family member to do? Most caregivers want help, but they don’t know specifically what type of help they want.
0:13:17:12 Pamela D Wilson: Uncertainty about desired help results in a spiral of emotion and frustration. Caregivers are not good at asking for help or being specific with instructions about how others can help. Part of this hesitation or ambiguity results from caregivers not having experience managing other people at work or working together on a team. If you don’t have this experience, it’s difficult to give directions to others about how they can help you.
0:13:51:93 Pamela D Wilson: For more on this, The Caring Generation podcast (Episode 57) called Giving Up Your Life to Care for Elderly Parents features an interview with Dr. Vanessa Bohns about asking for help without feeling guilty. For caregivers, steps to take—when wishing an elderly parent would die or feeling that no one understands the sacrifices—are to stop making sacrifices and own your life choices.
0:14:21:89 Pamela D Wilson: Your elderly parents made choices. You made choices. What different choices is it time to make so that you feel better about yourself and your life? You say you didn’t choose to become a caregiver but you’re the one doing all of the work. Actions equal choice. You accepted the responsibilities. What difficult choices do you have to make to stop being a full-time caregiver who continues to sacrifice different parts of your life?
0:14:56:40 Pamela D Wilson: Choices include educating yourself about all of the care options that exist and having an adult discussion with mom or dad about making a plan. Caregiver confession #2 I wish a sick parent would die – mom, dad, or a spouse is never happy with what I do. I can’t make anyone happy. Caregiving is hard work, especially if this is your first, second, or third go-round. Most caregivers learn by trial and error.
0:15:29:71 Pamela D Wilson: You do your best to keep your life going while trading 20, 30, 40, or more hours a week to care for a loved one. If you are not yet at this time commitment, you may be in the future. Or you might be an unexpected caregiver whose parent had a fall or a heart attack last week. All of a sudden, you’re swept into taking care of your mom or dad. All this is new to you, and you have no idea what you should be doing or how to plan.
0:16:00:89 Pamela D Wilson: Responding to crises happens in many families when parents don’t initiate conversations about care needed when older. To respond to thoughts of I wish a sick parent would die because mom or dad is never happy with what I do, here are a few questions. Has your parent always been dissatisfied, unhappy, negative, or angry? If so, their behaviors are not likely to change now.
0:16:31:44 Pamela D Wilson: If a parent has dementia, you have to give up all expectations about how you think mom or dad should act. Having a brain injury means that the mom or dad you remember who had logical conversations, ran a household, had a career, or juggled family life no longer exists. You or someone else will have to make decisions and take total care of your mom or dad. If not today, then at some point in the near future.
0:17:07:51 Pamela D Wilson: If you are a person with memory loss listening, don’t wait to make a plan for your care. If not dementia is your parent depressed or have a mental health condition that results in comments or behaviors that make you feel like you’re not doing a good job. With all of the tasks that caregivers juggle, it’s easy to feel that you can’t keep up. Dissatisfaction on the part of a parent is the perfect conversation opener to confirming that you can’t do it all and that help is needed.
0:17:43:47 Pamela D Wilson: The support might be hiring an in-home caregiver. It could be considering having mom or dad go to a day center or move to an assisted living community or a nursing home. Instead of feeling that you’re never good enough—which can also relate to early life parent-child relationships that have never been resolved—you can create alternative discussions by talking about the idea of outside help and support.
0:18:15:51 Pamela D Wilson: Changing the way that caregivers think about having to do everything and being the only person that can provide care is part of adapting to change and relinquishing control. You don’t have to do it all unless you want to. You and your parents have choices. The time, effort, money, and sacrifices of caring for elderly parents eventually become impractical for many caregivers.
0:18:43:78 Pamela D Wilson: There also may be times when you feel that elderly parents aren’t doing enough to help themselves. More on this is in The Caring Generation Podcast (Episode 92) What to Do When Your Elderly Parent Gives Up. The other expansive bigger person’s idea is to be happy with yourself and recognize all you do for a parent or a spouse. Caregivers lose their sense of self-worth or self-esteem when another person constantly criticizes, belittles, complains, or tells you that you’re not good enough or not doing enough.
0:19:21:66 Pamela D Wilson: It’s okay to be kind and stand up for yourself. Ask mom or dad open-ended questions about how they would change the situation and how they would like to plan to make this happen. If this is a new situation, it may be something simple like allowing mom or dad to fold their laundry instead of criticizing you for sloppy folding. If the complaints have been going on for some time and you’ve tried everything, then it may be time to look for other solutions.
0:19:54:45 Pamela D Wilson: For example, try this conversation. Mom or dad, I understand you’re not happy with the way I help you or the current situation. Neither am I. I’m doing the best I can and I rarely meet your expectations. Here are a few options: offer in-home caregivers, day care, assisted living, or a nursing home. Ask – which options parents want to investigate? While you’re working your way through, mom or dad is never happy make yourself happy.
0:20:29:93 Pamela D Wilson: People who are happy with themselves and their lives are generally more optimistic in all areas of life. Issues caring for aging parents affect employees in the workplace because of mental distractions and worries, interruptions—phone calls from parents or phone calls to doctors. Coming in late, leaving early to take parents to appointments, or running to your parent’s home to deal with emergencies. Then there is lost income and considerations of quitting a job to be a full-time caregiver.
0:21:07:63 Pamela D Wilson: Caregiving responsibilities affect time with friends and family. Caregivers delay attending school, getting married, having children. It’s no surprise that burned-out caregivers spend time wishing a sick parent would die so they can have their life back. Many parts of life can be negatively affected by devoting 20 or more hours a week to the care of sick elderly parents.
0:21:36:92 Pamela D Wilson: Caregivers, begin today doing more things for you by finding support options for the care of a parent. Part of being happy in life is being happy with ourselves. Caregivers who have low-self esteem, low energy and feel that they’re not making anyone happy fall into patterns of ignoring their needs. Taking care of yourself is an idea of self-care and wellness.
0:22:05:95 Pamela D Wilson: The Caring Generation Episode 43, called Self-Care for Caregivers, has tips for caregivers about making you a priority. The interview on this program is with Dr. Christopher Crnich, who shares research about infectious diseases among the elderly. Number three for wishing a sick parent would die is caregiver resentment and depression about caregiving and having to make decisions that a parent isn’t going to like.
0:22:36:57 Pamela D Wilson: Some caregivers consider suicide or wish that they wouldn’t wake up the next morning when caregiving responsibilities become overwhelming. Caregivers I speak with find me – my website pameladwilson.com, this show, my videos, or articles through late-night Internet searches when they can’t sleep. Trading time to be a caregiver can result in feeling depressed, lonely, and isolated.
0:23:05:92 Pamela D Wilson: Elderly parents who need care feel the same way. This is why considering outside care and having other people involved in a care situation is beneficial for the caregiver and the care receiver. More about caregiver and care receiver relationships after this break. Thanks to all of the caregivers and aging adults who follow and communicate with me on social media to ask questions and provide questions and topics for this podcast, videos, and articles on my website.
0:23:39:90 Pamela D Wilson: Complete the caregiver survey on my website to offer thoughts, suggestions, and information. Follow me on Facebook, join my Facebook online caregiver support group, The Caregiving Trap, named after my book of the same name. Follow me on Instagram, Twitter, and Linked In. I’m Pamela D Wilson on The Caring Generation, Stay with me I’ll be right back.
0:24:32:36 Pamela D Wilson: This is Pamela D Wilson on the Caring Generation. Tips, articles, videos, this podcast, my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, online courses about becoming a guardian, and actions to help yourself or an aging parent live independently at home are all on my website at pameladwilson.com. Please share this show and information with others you know who are seeking, hope help, and support.
0:25:01:42 Pamela D Wilson: Many people helping or caring for elderly parents don’t know who to trust for accurate information about caregiving, aging, family relationships, and everything in between. Relationships that are tied to being or having contact only with one person are not healthy. I talk more about this In The Caring Generation Episode 93, When You Can No Longer Care for an Elderly Parent.
0:25:30:96 Pamela D Wilson: This episode features an interview with Dr. Ingrid Bacon about unhealthy caregiver–care receiver relationships. How can you tell if your caregiving relationship is unbalanced and what to do about it? When care situations need to change, the caregiver initiates the change more often instead of an elderly parent or spouse initiating the change. Change happens when caregivers become burned out and wish a sick parent would die.
0:26:06:13 Pamela D Wilson: Caregivers go on and on week after week, month after month, year after year until they come to a breaking point. How many of you are here at this point or know that it’s approaching. Instead of waiting, take action today, investigate options and make a plan. Let’s talk about a plan to move a parent out of their home, out of your home, or you maybe moving out of their home and moving them into a care community.
0:26:40:17 Pamela D Wilson: If this is the situation, you probably feel guilty. That’s perfectly normal. Your parents may be angry or worried about the decision. No doubt it’s a difficult decision. But it’s the right decision if your parent needs more care than you can provide, if the cost of in-home caregivers becomes too much, or if there is no money to pay for care and you are applying for Medicaid, Medi-cal or whatever that public benefits are called in your state.
0:27:12:40 Pamela D Wilson: It’s the right decision if you’re burned out. If you have looked at care communities, you know the space available is small. Many times it’s a studio-sized apartment or a shared nursing home room. Your parent may have lived in a big house or is in a 1500 square foot apartment. There’s a lot of stuff to get rid of to make this move happen. With a plan, you can make it happen.
0:27:41:34 Pamela D Wilson: Let’s continue the conversation about making decisions a sick parent won’t like. When care situations go on year after year, desiring freedom and having more control over life is the dream of many caregivers. By the time you’re burned out, and wishing a sick parent would die, it’s time to make different choices if you want to preserve your emotional and physical health and your life.
0:28:07:81 Pamela D Wilson: This doesn’t mean that the life of a parent, spouse, or another family member is less important than yours. Feeling burned out confirms that there is an imbalance. Maybe multiple imbalances in the life of a caregiver. Anger and resentment arise from feeling out of control. Figuring out how to let go of the anger requires changing thoughts, daily activities, and coming up with a plan that helps burned-out caregivers feel more in control.
0:28:41:56 Pamela D Wilson: Forgiveness plays a big part in moving away from anger and resentment toward happiness. Many aspects of caring for aging parents are uncontrollable, especially when caregivers interact with different people: family members, doctors, nurses, insurance companies. Add to these frustrations constraints or limits. Mom or dad have limits on what they can do for themselves.
0:29:09:78 Pamela D Wilson: Money to pay the bills or to pay for care may be limited. Health insurance plans may have limits. Flip thinking about limits to thinking about what you have to work with. For example, mom or dad can still do this. Which means as a caregiver, I want to focus on keeping mom or dad doing this at this activity level. How do I do this instead of continually doing more and more which makes me feel frustrated that I don’t have a life which then leads to wishing a sick parent would die?
0:29:49:40 Pamela D Wilson: Keeping a parent at home, supporting physical independence and health takes a lot of work, and understanding how one thing relates to the next. There are obvious things like physical activity, nutrition, managing medications, and preventative care that everybody talks about. Based on a parent’s age, mental and physical ability, and health conditions, the actions to support or maintain health are very different.
0:30:20:11 Pamela D Wilson: If you’re a busy caregiver, admit it. It’s difficult to find the time to research information, to join a caregiver support group or take an online course. This is where the choice of conversation re-enters into how burned-out caregivers feel when wishing a sick parent would die. If you’re at this point, you’re at the end of your rope.
0:30:43:19 Pamela D Wilson: You may have allowed too many choices to go by the wayside, which means there are fewer options and choices available today. Let me share a couple of examples so that this makes more sense. Before a parent falls or breaks a hip, there are more options to participate in activities that can prevent a fall. There are many signs that a parent is a fall risk. But if you don’t know the warning signs that might be happening every day, you miss them.
0:31:15:66 Pamela D Wilson: Mom or dad gets sick and ends up in the emergency room. They’ve had a fall or they’ve lost twenty pounds. You didn’t notice. Maybe because they always wear loose clothing or you didn’t see them walk around their house. They may appear well when they’re with you but this time is limited. The doctor at the hospital diagnoses mom or dad with cancer, dementia, stomach issues, or another serious medical condition for which balance or weight loss or physical weakness could have been a warning sign.
0:31:47:98 Pamela D Wilson: Many older adults are malnutritioned. It can take months to reverse this condition if even possible. Taking medications, not taking medications, and understanding the side effects are all very important for the elderly. There is a lot to pay attention to. It can be challenging to know what’s important or what’s not important for your parent.
0:32:11:44 Pamela D Wilson: Imagine this—spending 40 hours when you first become a caregiver to avoid all of the common mistakes that happen when being a caregiver. All the things that lead to increasing health issues with aging parents, becoming a burned-out caregiver, or wishing a sick parent would die can be avoided by a little education. It’s like taking a parenting class when you have a baby except that this is the reverse, learning how to care for elderly parents who, depending on their condition, can at some point need the care provided for a baby.
0:32:52:80 Pamela D Wilson: The more you can learn about caring for a parent and the choices that have to be made as parents age and move through different levels of care, the more choices about care you have. The less you learn, the more struggles you may experience, along with having to make gut-wrenching decisions that you’d rather not make. We’ll talk more talk about making difficult caregiving decisions in the second half of this program.
0:33:23:43 Pamela D Wilson: Up next, an interview with Dr. Mellissa Withers, an Associate Professor at the Keck School of Medicine in the Department of Population and Public Health Sciences, talking about early-onset Alzheimer’s disease. What adult children should know about recognizing memory loss in young or middle-aged parents. I’m Pamela D Wilson on The Caring Generation. Stay with me; I’ll be right back.
0:34:14:53 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. The only program of its kind offering proven, reliable tips, information, and research for caregivers and aging adults worldwide. If you are looking for help with decision-making about care for elderly parents or making a care plan for yourself, I can help. Visit my website PamelaDWilson.com to schedule an eldercare consultation. Click at the top on How I Help, then Family Caregivers, and then Eldercare Consultation.
0:34:47:18 Pamela D Wilson: On the subject of research about early-onset Alzheimer’s disease, I’d like you to meet Dr. Mellissa Withers.
0:34:55:83 Pamela D Wilson: Dr. Withers thank you so much for joining me.
0:34:58:36 Dr. Mellissa Withers: Thanks for the invitation.
0:35:00:70 Pamela D Wilson: You do a lot of research and your research identified a distinctive type of early-onset Alzheimer’s disease that happens in the last twenties, and the early, you know through the late forties in the Latino population. Would you share the genetic background and the statistics you have about the number of persons with this diagnosis?
0:35:20:25 Dr. Mellissa Withers: So we’re still finding out more and more about this. But at least 186 different mutations in 3 different genes have so far been identified to cause a particularly rare form of early-onset Alzheimer’s autosomal dominantly inherited. So that means that in the families with this mutation the children and the siblings of people with this rare form of early-onset Alzheimer’s disease have a 50% chance of inheriting the mutation.
0:33:00:00 Dr. Mellissa Withers: And if they do inherit it, then they are pretty much 100% likely to get the disease. So large numbers of families with this form of, with these mutations have been found already in Columbia, and Puerto Rico, and now in the United States. In Mexico, more than 85 families so far have been identified and it appears to be a founders effect and the mutation is apparently coming from a state in Mexico called Jalisco.
0:35:38:97 Pamela D Wilson: What are the challenges for Hispanic family members to realize that this exists and then to obtain a diagnosis from primary care physicians or other healthcare professionals who may not even realize that this exists?
0:36:56:28 Dr. Mellissa Withers: Well early-onset dementia, in general, is more difficult to recognize and to get diagnosed. It generally takes substantially longer than late Alzheimers—late-onset Alzheimer’s or dementia to get a diagnosis. Which can delay appropriate care. It can delay access to services and resources for patients but also for their families. And in our studies, most everyone has reported negative experiences with primary healthcare providers who generally are just uninformed about early-onset Alzheimer’s disease or un—kind of insensitive or unsympathetic.
0:37:38:85 Dr. Mellissa Withers: A number of our participants said you know, she went to the doctor to explain that there was this form of Alzheimer’s that ran in her family and that she was worried about developing it and wanted testing and the doctor was like, “oh, you’re too young to worry about this. And she was like, “no this happens in your forties,” and he asked her, “well how often do you actually worry about this. And she said, “every day, every minute, of every hour of every day. Like, I need testing.” And it really took her to educate the primary care doctor before she was referred on.
0:38:21:61 Pamela D Wilson: Well, and it has to be significant for these children, like the woman that you talked about if their parent has this disease they’re scared to death they’re going to get it. What type of testing confirms that someone has this rare type?
0:38:34:63 Dr. Mellissa Withers: Yes, there are now tests that can test for these mutations (read the article by Dr. John Ringman) so the testing is available but a lot of people don’t know that it’s available. Or lack counseling, genetic counseling and so they’re not really sure what the ramifications are and they’re scared to get tested.
0:38:59:09 Pamela D Wilson: And so let’s say, I was the daughter of a parent who had this, and I went to my primary care doctor who knew nothing about this. What would I ask for?
0:39:07:74 Dr. Mellissa Withers: You would probably need to ask for a referral to a neurologist or an Alzheimer’s specialist at that point who may know more about it. And of course, we here at USC have specialists who have actually found these families from Mexico in the United States. But unfortunately, it took many of them years and years to be able to find someone who knew what was going on in their family.
0:39:38:67 Pamela D Wilson: And to that point, in your research, how did family members of persons with this early-onset Alzheimer’s realize that something was wrong with their parent and that they needed to go see a doctor?
0:39:51:57 Dr. Mellisssa Withers: Yes, so it varies a bit, but the vast majority of the participants in our study were aware of some kind of family history but they definitely lacked accurate information about what that actually meant. Some of them had spouses that developed early-onset Alzheimer’s disease and they had actually been told years before that there was a disease in their spouses’ families but, again they really weren’t clear about their actual risk of developing it and certainly not that—there’s really nothing that could be done to prevent or cure it.
0:40:36:69 Dr. Mellisssa Withers: So those with family members, that they had personally witnessed getting sick obviously knew the red flags and knew the signs and symptoms. And many of the patients could actually name several family members from previous generations that had it. Like grandparents and uncles but often they were in denial. I mean, they themselves said they were just in denial and they thought it wasn’t going to happen to them.
0:41:09:17 Dr. Mellisssa Withers: And I remember one of our participants said you know, she grew up seeing this in her family, time and time again. She said, half her family got it and the other half were caregivers. But a really common theme in my research is they—family members often ignored the symptoms or made excuses. Oh, it’s stress. It’s a lack of sleep. And often it took crises or some dangerous event for them to get care. Either like getting fired from a job that the family member had for years, or even wandering off and getting lost. Which obviously is problematic.
0:41:51:12 Pamela D Wilson: Talk about the impact of this on families and the challenges faced by caregivers, so maybe a twenty-year-old child who has a parent who is 35 or 40 and they have this disease. How does this affect these families?
0:42:08:015 Dr. Mellisssa Withers: Yes, it’s absolutely tragic and I actually have embarrassed myself a bit by crying while giving these talks because its just—it impacts their entire families and I’ve talked to women, for example, who just had their husband’s die of this and now they’re seeing the symptoms in their children and they’re having to go through another generation of taking care of their family members. And it’s just heartbreaking.
0:42:41:20 Dr. Mellisssa Withers: And because this is distinct from the more common late-onset forms of Alzheimer’s the people that, when they get sick they’re often actively working. They often have young children. You know they’re very young. They have spouses who are employed who all of a sudden they’re having this increasing dependence on either their spouses or their children and it can often create a greater burden for these caregivers because of the younger ages of the affected family members and also because the caregivers are younger and may be less likely to be prepared for this experience, for this role.
0:42:28:53 Dr. Mellisssa Withers: They may have less understanding or certainly less acceptance of the disease and of course, you mentioned, they’re often worried if they’re at risk. They’re worried themselves of getting it. And so our results show that they definitely have distinct needs and it has to do with the early onset nature. It has to do with the inherited nature. Certainly, the Latino community has certain other needs that relate to like dual language resources.
0:44:04:49 Dr. Mellisssa Withers: It’s really, really heartbreaking and we’re definitely not doing a good enough job of meeting their needs. They have the financial impact. They often don’t have —they’re too young to quality for government assistance, or pensions. So they don’t have a lot of safety nets and also the loss of your partner so young. You’re not prepared to lose your partner in your forties to such a devastating process.
0:44:36:63 Pamela D Wilson: Well, and I have worked in this industry for over twenty years and I was surprised to find your research article. You know, there’s little or no awareness about this. What is being done, what are you doing? What can other people do to offer education to healthcare providers and to support these families and caregivers that this is something that happens and it’s okay to talk about it and you should go get help.
0:45:03:29 Dr. Mellisssa Withers: Well we definitely need more awareness and I’m so glad that you’re featuring this topic. Because we need more awareness for patients and families but also for healthcare providers and even for the general public. So in our research, overwhelmingly, our research participants said that they need more information. They talked about it after the initial diagnosis. They said well, “okay you’re ignorant. So you say oh Alzheimer’s, sure, they lose their memory.
0:45:38:65 Dr. Mellisssa Withers: But you have really no idea of what the process is going to be. How to care for your loved one. Basic skills of caring for someone who has early-onset Alzheimer’s disease. As well as their own self-care, stress management, coping strategies. These definitely can better equip caregivers to cope with the demands of caregiving as well as make sure their own health doesn’t deteriorate. Which we find in many many studies.
0:46:12:61 Dr. Mellisssa Withers: And then our participants also talked about the need for better education for the public. Because we need more empathy. And they talked about not wanting to leave their house with their loved ones because people didn’t understand that someone so young could have Alzheimer’s and so they thought were either alcoholics or they were crazy or they were just aggressive. They really just didn’t understand this irregular behavior and they, it became really uncomfortable for the family members to interact with the public.
0:46:52:35 Dr. Mellisssa Withers: And they even talked about, well if I take my husband out in public and what if we need to go to a public restroom? People aren’t going to understand that someone who is 45 years old needs help. And so we definitely need more education and awareness and then they need more support and resources. And as I mentioned, it needs to be dual language. It needs to be culturally appropriate and definitely tailored toward early-onset inherited forms of Alzheimer’s disease.
0:47:31:38 Pamela D Wilson: So let’s say I’m hearing this and I’m Latino and some of my family is from Jalisco and this is happening, can people call USC, can they get ahold of you. How do they, what would they first do if they hear this and they’re thinking oh my gosh I may be in this group. Who can I call to get some real help?
0:47:49:74 Dr. Mellissa Withers: My colleague that is the expert in this, kind of the world expert is Dr. John Ringman at USC. He’s a clinician and he’s a neurologist and he would know about testing resources and how to find out if you have this particular form or to be able to refer you to appropriate services and care.
0:48:21:51 Pamela D Wilson: And so I can get a link that I can put in the transcript that if people are interested they can click on that and find out more information?
Contact the USC Department of Neurology, Dr. Ringman, and his team in the Clinical Research Department at 323-442-2357. Make sure you mention hearing about early-onset Alzheimer’s research from an interview with Dr. Mellissa Withers on The Caring Generation.
0:48:27:34 Dr. Mellissa Withers: Sure
0:48:28:59 Pamela D Wilson: Perfect. Anything else you’d like to share on this subject?
0:48:31:41 Dr. Mellissa Withers: I guess the last thing I’d like to say which is related to what we were just talking about is we need more genetic counselors. We need more access to genetic counseling and testing so that as awareness builds and people are interested in finding out their options for testing and what that exactly means that we have someone who can help educate them and walk them through this process.
0:49:00:79 Pamela D Wilson: Dr. Withers I thank you so much for your time and really for the research that you do this is so important.
0:49:06:41 Dr. Mellisssa Withers: Thank you. Thank you so much for the invitation to speak about it to you.
0:49:11:39 Pamela D Wilson: My pleasure. Listeners, check out the show transcription my website pameladwilson.com for the link to contact USC for testing resources and other information for this form of early-onset Alzheimer’s Disease. The Caring Generation is not limited by time zone or location—caregivers worldwide can listen any time of day. The show and the transcript that you can read to find links to research and caregiver support tips mentioned during the program are on my website at pameladwilson.com.
0:45:00:00 Pamela D Wilson: Click on the Media Tab and then The Caring Generation to find the show transcript. If you are looking for articles and education about caregiving and aging topics, visit the Caring for Aging Parents Blog and my caregiving library on my website. We’re off to a break. This is Pamela D Wilson on The Caring Generation, stay with me I’ll be right back.
0:50:33:64 Pamela D Wilson: This is Pamela D Wilson, caregiving speaker, expert, and advocate on The Caring Generation program for caregivers and aging adults. Whether you are twenty or 100 years old, you’re in exactly the right place to learn about caregiver support programs to help you and your loved ones plan for what’s ahead. If you’re not sure how to talk to your children about caregiving issues or if you’ve tried to talk to your aging parents. Let me start the conversation for you. Share this podcast
0:51:01:31 Pamela D Wilson: Earlier in the program, we were talking about helping aging parents through the different levels of care needed, along with the choices and decisions that have to be made. For example, wishing a sick parent would die can result from frustration about safety concerns or parents not following a doctor’s recommendations to use a walker or to do balance exercises.
0:51:25:84 Pamela D Wilson: Let’s talk about another example. Mom has fallen multiple times. One more fall, it could be another fracture. It means mom will have no choice but to reside in a nursing home permanently. Or today, she could move out of her home to assisted living where there is support from staff with physical activities, meals, medications and exercise. Mom might be able to avoid having a fall, or if she does fall, she may not become as injured as she would if she didn’t have all of this support and she was living independently alone at home
0:52:10:96 Pamela D Wilson: What do you do? Do you make no decision and hope for the best or move mom today to increase the likelihood of preventing a serious injury? These are the difficult decisions and choices faced by caregivers and their loved ones. Older adults and their caregivers can deny the severity of a situation and the potential consequences. The longer you wait to make changes or discuss choices the more difficult situations will become and the fewer choices you will have.
0:52:50:42 Pamela D Wilson: Being practical and realistic usually results in more choices, better choices than being led by emotions or fears of upsetting a parent or making mom or dad mad. Avoid getting to the point where you are wishing a sick parent would die by learning as much as possible about caring for aging parents as early as possible. Visit my website PamelaDWilson.com and consider taking my online courses for caregivers.
0:53:21:08 Pamela D Wilson: How to Help Elderly Parents, and if a parent has dementia and you’re looking at legal considerations How to Get Guardianship of an Elderly Parent. Both caregiver courses can shortcut your learning by offering practical and proven processes that I used when caring for clients for more than twenty years. Let’s talk for a few minutes about having a bigger perspective and being the bigger person when you are the primary caregiver.
0:53:49:03 Pamela D Wilson: Let’s be honest if you are the caregiver; you have superhuman abilities, dedication, and endurance to do everything you’re doing even though you may feel burned out or wishing that a sick parent would die. This isn’t to say that your health and wellbeing are not suffering – it’s likely they are. Which is why it’s important to consider making changes. The more that we as caregivers can remain open-minded, unbiased, and not judge situations or people, the greater our ability remains to be kind, positive, balanced, and happy.
0:54:33:31 Pamela D Wilson: How do you know if you have these qualities or the abilities to take these actions? I’ll share a few questions that you can ask yourselves. First, do you listen to others without interrupting and really listen. Do you hear what a person is saying, do you look at their expressions and body language, and hear the little things that lead you to ask another question.
0:54:59:59 Pamela D Wilson: Asking follow-up questions to confirm that you understand a meaning, comment, or explanation lets others know you care and are interested. Asking questions also helps you avoid misunderstandings, be thorough if you are trying to explain or educate someone, and make sure that you are on the same page.
0:55:22:79 Pamela D Wilson: Communication is the area in all of our lives that it’s easy for misunderstandings to occur and where expectations might be implied but not confirmed. Let’s return to the idea of asking for help. You say to your sister, can you help me out and she says yes. Well what does that mean? Does your sister have a different idea of helping out than you do? When will she help? What will she do?
0:55:47:64 Pamela D Wilson: The more open-ended you leave a help request without being specific, the more likely you are to be disappointed or have a different expectation of the result. Then we have conversations where it’s better to be kind than to be right. Here’s an example. Let’s say your brother says something that you disagree with, like mom’s dementia isn’t that bad. You can ask him about his definition of bad and why he thinks mom is okay and listen.
0:56:19:81 Pamela D Wilson: Rather than argue with him you could say something like; I can see how you think mom’s dementia isn’t that bad when you spend 30 minutes with her every week. One way for you to understand why I’m more concerned might be to spend the day with her. Is this something you can do in the next week? Part of being the primary caregiver with the bigger perspective is the responsibility to educate family members and help others to understand through experience.
0:56:52:43 Pamela D Wilson: Why tell them if they can learn on their own? Experience is the best teacher. This type of interaction supports feeling judged by others for wishing a sick parent would die. Loved ones have no clue what you sacrifice. Parents, siblings, or others may never be happy with what you do. You want to run away, you’re considering suicide or you’re not sure how much longer you can do this. The best way to help others understand if at all possible, is to take time away from caregiving and let others step in.
0:57:31:85 Pamela D Wilson: It’s to begin doing less for elderly parents so that they have more to do, which can be helpful if a choice has to be made that gives you more of your life back with a parent hiring in home caregivers or moving into a care community.
0:57:51:78 Pamela D Wilson: Don’t wait until you’re at the end of your rope or so burned out that you wish a sick parent would die. Find help and support today. There’s something for everyone at PamelaDWilson.com. This is Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Love to everyone. Sleep well tonight. Have a fabulous day tomorrow and pleasant journeys until we are here together again.
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