How To Be The Best Caregiver For Your Parent With Dementia
Are you struggling to balance your life while caring for a parent with dementia?
Caring for a loved one with dementia is challenging, especially for adult children. Today’s episode explores the unique challenges faced by adult child caregivers and offers insights and tips to navigate this journey effectively.
The Statistics Speak
Did you know that 60% of family caregivers are adult children of someone with dementia? Most of these caregivers are between 45 and 64 years old, and 75% are women.
Balancing work and caregiving is common, with many caregivers working over 30 hours a week.
Additionally, 70% face significant out-of-pocket costs, and about half report high stress or health issues due to caregiving.
Unique Challenges
Role Reversal:
One of the hardest parts of caregiving is the role reversal. Helping a parent with personal tasks can feel uncomfortable and emotionally taxing. This reversal changes the dynamic and can be challenging to navigate.
Sibling Dynamics:
Managing relationships with siblings can add another layer of complexity. Often, not all siblings contribute equally to caregiving, leading to frustration and resentment.
Balancing Responsibilities:
Adult children caregivers often juggle multiple roles—work, parenting, running a household, and caregiving. This balancing act can be overwhelming.
Planning for 24-Hour Care:
It’s crucial to plan for the future, as dementia often progresses to a point where 24-hour care is necessary. Having a plan in place can reduce stress and ensure that your loved one receives the care they need.
Managing Your Well-Being
Set Healthy Boundaries:
Establishing boundaries is essential to avoid burnout. It’s okay to say no when needed and to delegate tasks to others.
Schedule Rest:
Regular breaks are vital. Schedule time for rest and relaxation to recharge. This will help you remain effective in your caregiving role.
Prioritize and Delegate:
Not everything needs to be done by you. Prioritize tasks and delegate when possible. This will help you manage your responsibilities better.
Seek Support:
Emotional support is crucial. Whether through counseling, support groups, or dementia coaching, having someone to talk to can make a significant difference.
Planning Ahead
Think about what you want your life to look like after your caregiving journey. Planning ahead can help you navigate the challenges of caregiving more effectively.
Consider your options for 24-hour care and what your line in the sand is—what you can and cannot handle.
Conclusion
Being an adult child caregiver for a parent with dementia comes with unique challenges. By setting boundaries, prioritizing self-care, seeking support, and planning ahead, you can navigate this journey more effectively.
Remember, you are not alone.
Reach out for support, and take care of yourself as you care for your loved one.
Read More:
Talking About Caregiver Burnout With Michelle Gordon
Check the other podcast: https://dignicarebydesign.com/category/podcast/
Email me: lizette@dignicarebydesign.com
Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/
Listen to the Podcast
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Caregiving Statistics and Challenges
[0:01] One of the scariest statistics that I have ever heard related to adult children caregivers of people living with dementia, and probably scary because it is me, is that 75% of adult children caregivers or women, more than 60% are still working 30 plus hours a week. 30 plus hours a week.
[0:38] Today’s episode, we look at how you can be the best caregiver of someone living with dementia As an adult child, and I invite you, if you have not yet joined me for my monthly meetup, it’s called Ask the Dementia Coach, where once a month you can hop onto a Zoom room with me and we can answer your specific questions in a quiet, intimate Zoom room. And you can get some specific individualized support. If you’re interested in joining this month’s monthly meetup, which is July the 25th at 6 p.m., the link is in the show notes for you to go ahead and apply for this next monthly meetup.
Introduction to Christian Dementia Caregiving
[1:43] Hey Christian caregiver, welcome to Christian Dementia Caregiving. It is the podcast where I teach Bible-believing Christians where to find help as well as hope for their caregiving journey so you can make memories as well as glorify God despite a dementia journey. We know dementia isn’t always easy, but it actually can be very simple. And today we are going to continue with our second of a three-part series related to caregivers, the three different types of caregivers. And to recap from last week or last episode on Monday, I just wanted to remind you that there are.
[2:33] Three different types of caregivers. And when I used to work in the healthcare field, I believed that a caregiver was a caregiver was a caregiver, that there really wasn’t any difference in how we are a caregiver when we are a caregiver. Like if you were a son helping a mom, it didn’t make any difference as opposed to a spouse helping another spouse. And maybe that was my own ignorance. Maybe I had my head so far up my anatomy that I couldn’t necessarily recognize that each one of these people have their own unique challenges and their own unique.
[3:16] Problems that they were dealing with because I was coming at it from a healthcare perspective. I guarantee you, healthcare providers do not pay attention to the caregiver. You are, as a healthcare provider, there for the patient, and your job is to treat the patient. The job is not to take care of the caregiver. And that is one of the reasons when I started to become a family caregiver that I felt the need to start this podcast, to start working with family caregivers in a different way because I became a family caregiver and I saw how hard it was and how the healthcare system really exacerbates that problem and makes it harder. But anyway, that was a little side note. But what I really want you to remember, if you didn’t listen to Monday’s episode, go back and listen to it, specifically if you’re a spouse, because Monday was about spouses.
[4:21] Today is about adult children. And Friday will be about a category of caregivers that we never hear about, the young adult caregiver. But each type of these caregivers have different needs and different challenges. And so that’s what we’re unpacking. Spouses are pretty easy. Adult children, I mean, spouses are pretty easy in the sense of it’s a category, you’re a spouse. Even though I know that there are subcategories of divorced spouses who are still helping their spouse and some things like that. But what I mean about adult children is in adult children, there are two types of spouses. Caregivers in the adult-child caregiving category. There are adult caregivers who are not married, who are caring for spouses, whether they be divorced or widowed or never married, and they don’t have children. So they have a little more leeway to be able to help take care of a parent. The second type of adult-child caregiver is the adult-child caregiver who is the sandwich. which. They’re between their parents and they’re between their own children and grandchildren.
[5:37] Then in the young adult category, we have parents of a child who has, say, dementia, or siblings who are helping siblings and they may not have dementia, or grandchildren of somebody that needs care, likely with dementia. And each one of them have a different set of problems. And then as As an introduction, we looked at specifically the Fifth Commandment, which talks about honoring your father and your mother. And then we looked at the Westminster Shorter Catechism, which says what is required of us in the Fifth Commandment, and that is preserving the honor and performing the duties belonging Belonging to everyone in their several places and relations is superiors, inferiors, or equals. And this is where the rubber meets the road for you as a caregiver when you are in one of these different categories because it changes your several places, relations, whether you’re.
[6:48] A parent of someone, whether you’re an equal like a spouse, or whether you’re an inferior like you are taking care of your own parent. But you’ve got to remember, it also is, this is subservient to your new station or relation, which means if you are an adult woman who has left and has cleaved with your husband, your primary relationship is with your husband and not your parents anymore. So I do want to highlight that as we start off today’s conversation.
[7:25] So what we’re going to do is we’re going to do it in the same format that we did the previous episode, and next episode will be the same. And what we’re going to look at is to start with some statistics, some statistics to to understand the role of an adult child caregiver. A big, fancy word to just say your parent has dementia, right? But adult child caregiver is the fancy term, so we’ll stick with that just for clarity. Did you guys know 60% of family caregivers are actually the adult children of somebody living with dementia? And all of these statistics, let me be very clear, All of these statistics are specific to dementia caregiving. I go research that for us. And then most adult child caregivers are between the ages of 45 and 64 years old. And about 75% are women.
[8:25] And they’re typically the daughters or daughters-in-law. Which adds a whole nother level of complexity. 60% of adult child caregivers are still employed full-time or part-time. And if they are, they’re working 30 plus hours a week. About 70% report significant out-of-pocket costs related to their caregiving tasks. So they’re supplementing their parents’ income or expenses.
[9:00] About half of them, 50% of them, report high stress or physical health issues themselves related to caregiving. And many rely on their siblings, but only 40% of them are doing it alone, even though they have siblings. Siblings so almost half of caregivers adult children caregivers who have siblings feel like their siblings are not helpful in their caregiving journey and I will just give a shout out to my sister my sister is awesome she supports me 100% of the way even though I’m the primary caregiver I’m not the full-time caregiver but I’m the primary caregiver of our parents but she just has been wonderful and extremely supportive. So thank you, my sister. Her name is Carla, so shout out to Carla. So some unique challenges that adult children as caregivers face is you have to start with your own relationship in your own role. So I’ll use my children as an example. My husband and I have two children.
[10:12] We’ve left and cleaved with one another, so we have our own household. My husband and I are very full aware that my dad is an atheist. And we have recognized and know now that despite everything we want to do to help, we will not be able to live in the same.
[10:30] House as one another, which means if they require 24-hour supervision, which if they live long enough, they will, we have to be able to do it in a different way. And so we have to be thinking about that and planning for that in the future. Adult child caregivers, another unique challenge that we have is we’re balancing multiple responsibilities. Work. Maybe our own children are still at home. Maybe we’re running businesses. Maybe we’re active in church. Maybe we are a wife and we have a primary responsibility to our spouse. We’re juggling all these different roles and responsibilities and you have to factor that in.
[11:13] Another unique challenge of an adult child caregiver is all of a sudden you now have a role reversal. You might all of a sudden now be required to do tasks with your parent that you’ve never needed to do before, like help them take a shower, like help them in the restroom. So there is a role reversal. Now you have to parent the parent, and that changes the dynamic. that changes your role, and it can be extremely hard for an adult child. There’s something we never talk about all that much, but the difference between a daughter helping her father or a son helping his mother, those can be unique challenges that each caregiver has to face. Another big, big, big problem or challenge or opportunity to improve is siblings, sibling dynamics.
[12:10] It is vastly interesting to me to see how frequently siblings are not on the same page. They grew up in the same household, but they have different relationship with their parents. They have different experiences themselves as parents, as siblings, and the drama that it can sometimes cause related to siblings not being on the same page. And there there’s a lot of truth to the fact that some siblings just don’t see the problem and as hard as this is for people to hear your siblings can choose not to be a caregiver caregiving is a choice and you might have chosen to be the caregiver and your sibling might have chosen not to be the caregiver and that is their right you may disagree with them but it is absolutely their right to choose based off of their own lives to not be the primary caregiver. So a lot of sibling dynamics play here and then a lot of changes in communication and emotional strain for an adult child caregiver and then perhaps anticipating the loss of your parent because you can see the actual…
[13:32] Changes that they are experiencing. So the third aspect of an adult child caregiver is yet again managing the emotional and physical well-being. And so sometimes you have to put up healthy boundaries.
[13:52] This is a hard thing. If you have chosen as the adult child to be the primary family caregiver, because either the other siblings haven’t stepped up or whatever the situation might be, you might have to put up healthy boundaries. I met with a couple earlier this week related to a husband and a wife who are anticipating needing to move his mother in with them. And his mom and his wife haven’t always had a stellar relationship. And so we talked about that. We talked about the fact that his primary relationship is with his wife and that if we needed to, if he needed to, there might need to be healthy boundaries in place. Another way of managing emotional and physical well-being is learning to prioritize and delegate things. Not everything needs to be done by you. Maybe you do it better than everybody else. It’s irrelevant. If you’re burnt out, you can’t help.
Unique Challenges of Adult Children Caregivers
[14:59] So you need to delegate and you need to prioritize. I’ll use another client. He’s actually a young adult client, but we were talking about the fact that he’s willing to go and mow his grandmother’s lawn, but that’s a task that can be hired out. Or is it better served for him serving his grandmother in a different capacity? So delegating.
[15:25] Then you have to calendarize as well as schedule rest in order to manage your physical and emotional well-being, not hell-being, well-being, to schedule your rest. You have to take rest. Now, and we’ll talk about this in the last point, but there are two primary ways an adult child is a caregiver. They’re the actual physical primary caregiver living with the person 24 hours a day, or they are the director of care. They’re helping with intermittent care. They are directing the care, but they’re not there 24 hours a day. And so both of those look a little bit different. And you do have to schedule.
[16:13] I’ll use myself as an example. My husband and I are currently only intermittent caregivers. We go once a week, we go intermittently in between, we do medication, we go pick up meds, we take to doctor’s appointments, we go socialize, we visit, we do those kinds of things. Four to six hours a week on caregiving, but it’s a burden. And so we actually went away for four days. And the four days we went away, I never thought about my parents, terrible to say, I didn’t. I didn’t think about them. I didn’t worry about them. I knew I have an electronic caregiver in the house. They could get help if they needed. I was only two hours away. But unplugging and scheduling that rest and relaxation was vital to me. We need to be able to learn how to say no more often. No to the siblings.
[17:08] No to the parent, maybe. You have to be able to actually say no. And we can talk about that a little bit more. And then you need to be able to find emotional support or coaching for yourself. If you truly are.
[17:29] Emotionally so wrapped up in everything going on that you’re no good to anyone, then you may need counseling, biblical counseling, and not dementia coaching. But if you are fairly doing okay, then dementia coaching is something that can be extremely, extremely valuable for you because it’s somebody who could provide you external support, guidance, mentorship, solutions to your specific problems. And you can find dementia coaching if you’re interested. I do one-on-one coaching with people, or I do group coaching with adult family caregivers, adult children of people living with dementia.
[18:14] So that’s certainly a specific solution. The people in the group coaching are all the way from care directors to 24-hour caregivers to distance caregivers. It’s a combination of people who are in the group coaching. So that is a specific solution to a specific problem that you might have. You can also find free support groups. Support groups are not all created equal. I’ve said this before. I’ll say it again. Again, if you do join a support group, you have to remember that the support group facilitator has perhaps limited exposure, maybe more than you do, to dementia and dementia caregiving depending on their own experiences and how many people they’ve had in support groups. But a support group is certainly an option. And there are some free Facebook support groups. You have to be very careful about which ones you join. Some of them are verbal vomit. Others are really good. I do have a free Facebook group if you’re interested in joining. It’s the same name as the podcast. It’s Christian Dementia Caregiving. So please join.
[19:28] Those are a few free resources available to you just from listening to this podcast. So you have to maintain your emotional, but as well as your physical well-being and health.
Join the Monthly Meetup for Support
[19:45] Do you feel alone and isolated and need a little bit more help and support in this journey? Journey, sign up for our next Ask the Dementor monthly meetup, where we will come together. Less than 10 people are allowed to sign up at a time, so we can have fellowship where we can answer questions, where you can get some Christian guidance and just an awareness that you are not alone on this journey. I really want you to be able to connect with me. I want to be able to answer your specific questions. So if you’re struggling, if you’re tired, if you’re overwhelmed, if you’re stressed, if you just need a little bit of help, sign up for the next Ask the Dementor monthly meetup. The link is in the show notes below.
Essential Health Tips for Caregivers
[20:49] And then you have to do these four things, diet, exercise, sleep, and stress. Those four things are vital to your health as a caregiver. You have to have a healthy diet. That may mean changing your habits. Changing your habits is not easy, but you can do them. You have to exercise yourself. You have to exercise your physical body and you have to exercise your brain. you have to make sure that you sleep and you have to manage your stress. So if you are struggling and you’re feeling stressed, I invite you to go take my free quiz by messaging me only the word quiz on either Instagram or on Facebook Messenger. Just message the word quiz. It’ll send the link. It’s an automation. It’ll send the link directly into your direct messages. And then you can just go there and fill out the quiz and see where you are related to your emotional health as a family caregiver, as an adult child family caregiver.
Managing the Caregiver’s Journey
[21:58] So that’s a free give to you to be able to help you with your stress levels. And then the last one in this particular episode is managing the caregiver’s journey.
[22:11] Proverbs 16 verse 9 says, the mind of man plans his way, but the Lord directs his steps. And we do have to plan ahead. And we do have to plan ahead in our particular station and place as the adult child, like we talked about earlier in the episode. And remember, Remember, I said that there are two types of adult children. There are the adult child who is not living with the person. They’re either a distant caregiver, so living an hour away. I live 15 minutes away.
[22:51] I’m not living with my parents, or they’re the care director. The care director would be an adult child of somebody who is living in a facility somewhere. They’re in an independent living facility. There are other people around, a memory care, an assisted living, or even a nursing home. So you could be that adult child caregiver is a care director of your parent. And then the second type of adult child caregiver is the one who has the person living with them 24 hours a day. They’re the one physically providing the 24-hour care. Or they are the 24-hour caregiver, like in my husband and my situation, if we moved my parents into the duplex, We could be the 24-hour caregiver using some strategies, but not be living directly in the same house. So there are some ways to do that. I’m very creative. And so as you as the adult child are managing your caregiving journey, you also need to answer the following questions for yourself.
[24:06] What do you want to look like after your caregiving journey? Journey. I’m 54 years old. If my mom who is 76 lives another 10 years, I’ll be 64. Lord willing, I will have grandchildren. I want to be able to get down on the floor and play with my grandchildren. I don’t want to have lost my own health and my own relationships with my children or my grandchildren or my husband because of my caregiving journey. So I know what I want my life to look like after caregiving. Do you? Because you have to ask yourself that. Then you also have to ask yourself if you are six months or a year after your dementia caregiving journey, and you look back on your journey, what was the best outcome? What are you going to regret more? What is the the thing that will totally undo you if you’re not able to do that?
[25:10] Is it your relationship with your spouse? Was it your relationship with your parent? Was it a promise that you felt like you were required to keep them at home? What is your, not mine, your best outcome of your caregiving journey when you’re done with it. And then how, we have to say this early and often, how do you plan for 24-hour care? Because if you have somebody you love living with dementia, you have to plan for 24-hour care. And if you have somebody you love living with dementia, you know that at some point or another, they are going to require 24-hour care if they live long enough. And what is that going to look like? What are your options? You have to plan ahead. And then you also have to ask yourself, what is your line in the sand? I love my dad. I don’t have to like him, but I do love him. And my line in the sand is I cannot live with him because of how he speaks to me and because of how he speaks to me, how I respond in a very sinful way.
[26:21] And I have recognized, my husband has recognized, my children have recognized that we cannot live with my father. None of us can live with my father. So if my father requires at some point, if he lives long enough, 24 hour care, I do have a plan. I have planned for this because I recognize that I know what I want to look like when I’m done with this journey. I recognize that I want my husband and my relationship to be intact. And I recognize that if he lives long enough with cognitive loss, he will require 24 hour care. And so I have planned ahead for this. So I know what my line in the sand is. Do you know what your line in the sand is? If you don’t know what your line in the sand is and you need help, one of the things that I do is I work with the adult children to plan this out because each plan is unique and different and we can work.
[27:28] Work through all of the different options, and we can come up with a plan so that you have a way of navigating this journey with less upheaval. So if you’re interested in that, just reach out. You can message me on Facebook. You can schedule a call off of the website, thinkdifferentdementia.com. I’d love to serve you. And at the very least, hop on a call and let’s have a conversation, and let me point you in the right direction. And as normal, we’re just going to do a quick recap.
[28:03] We talked about the statistics specific to an adult child caregiver. We looked at the unique challenges of the adult child caregiver. We talked about how to manage your physical and your spiritual and your emotional well-being as an adult caregiver. We talk about the spiritual a lot in most of my other episodes, so we really are not looking at that today. And then lastly, how to manage your caregiving journey and how to plan ahead and what that looks like. I know how valuable this episode was. It was jam-packed with a lot of information. If you need to listen to it again, if you need to hop on a call, I’m happy to help you. Let me know what it is that you need. I want to serve you, dear Christian caregiver, and know something. I pray for you every single day. I pray for the family caregivers of people living with dementia, and I pray that the Lord will bless you and keep you. And I look forward to serving you in our next episode, which we’ll be talking about young young adult caregivers, which is a whole separate category of caregivers.
