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Dementia Caregiving Needs To Be Done, Not Perfect

Are you struggling for perfection in dementia caregiving?

Have you ever felt the pressure to provide perfect care for your loved one with dementia? You're not alone.

Today’s episode tackles a common myth: caregiving doesn't have to be perfect; it just needs to be done. Let's explore why embracing imperfection can actually benefit both you and your loved one.

The Myth of Perfection

No one is perfect. The idea that caregiving must be flawless sets unrealistic expectations. Remember, even minor mistakes won’t diminish the quality of care you provide.

Embrace the fact that your best effort is good enough. Focus on what truly matters: your loved one’s well-being.

Unrealistic Expectations Lead to Burnout

Expecting others to care exactly as you do is a recipe for frustration. Each person has a unique approach to caregiving. Your way isn't the only way. A helpful tip? Let go of perfection.

Allow family members or paid caregivers to assist, even if they don’t do things exactly like you. This flexibility reduces your stress and prevents burnout.

The Necessity of Respite Care

Taking breaks is not a luxury; it's a necessity. Respite care is essential for maintaining your health and providing quality care.

Consider this: 30% of spousal caregivers may pass away before the person they care for due to stress. Schedule regular breaks to recharge. This not only helps you but also enhances the care you provide.

Trusting Others

Trust is crucial in caregiving. You know your loved one best, but others can help too. Trust that family members or paid caregivers can provide good care.

Building this trust involves clear communication and understanding that different doesn't mean wrong. Document routines and preferences to ensure continuity of care.

Practical Tips for Caregiving

Set Realistic Expectations: 

Accept that not everything will be perfect. Focus on meeting basic needs and maintaining a good quality of life.

Pray for Wisdom: 

Identify what can be let go. Not everything is equally important. Simplify tasks when possible.

Prepare for Respite: 

Teach others how to care for your loved one. Use videos or detailed instructions to make transitions smoother.

Schedule Breaks: 

Plan regular times to rest. This prevents crises and ensures you remain healthy and capable.

Final Thoughts

Caregiving for a loved one with dementia is challenging yet rewarding. By embracing imperfection, setting realistic expectations, incorporating respite care, and trusting others, you create a sustainable caregiving environment.

Remember, caregiving doesn't need to be perfect—it just needs to be done with love.

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

a close-up of a person's fist bump 142. Dementia Caregiving Needs To Be Done, Not Perfect

Myth-Busting Caregiving Needs

[0:02] Some of my most favorite episodes to do of this podcast is what I call my myth-busting episodes. Today is a myth-busting episode, and the myth we are going to bust is that caregiving needs to be perfect. Well, I am going to bust that myth by reframing it for you and saying caregiving, specifically dementia caregiving, needs to be done sometimes, but not necessarily perfectly done. So listen to today's episode 142 to hear why caregiving needs to be done and not perfect.

Importance of Hope and Peace

[0:56] Well, welcome back Christian caregiver. Welcome to the podcast where I teach Bible believing Christians that we can have hope and peace during dementia caregiving.

[1:11] Dementia care isn't always easy, but it actually is quite simple.

Insights from Support Group Meeting

[1:17] We are going to have a very special episode today. I had a unique opportunity to present at an Alzheimer's Association's support group meeting earlier this week. And something came very obvious to me as I was talking to the family caregivers of somebody living with dementia, and I wanted to talk about it with you guys today. I want to do a myth-busting episode where we're going to talk about dementia caregiving needs to be done, but it does not need to be perfect. Now, what on earth do I mean by that? Well, let me paint the picture to you related to how I came upon this topic today. We were at a support group meeting on Tuesday night, and there were multiple family members of somebody living with dementia. This particular support group is very unique because the person living with dementia comes to the support group, and And during the time that the family is being supported or educated, the person living with dementia.

[2:39] Has an opportunity to socialize as well. It is a very, very robust and good support group here locally. But the picture I want you to have is an older gentleman with his daughter and his granddaughter at this support group. With his wife being not with him right at that moment. And the topic of conversation that we had during this support group meeting was related to dementia caregiver stress. Now, if you haven't listened to episode 139 of this podcast, I want you to go back and listen to that because we We actually unpack the entire presentation that I did on Tuesday night for these caregivers related to the different buckets of stress that a family caregiver actually can experience. So we were talking about the caregiver stress assessment.

[3:44] And another place that you can go if you are interested in seeing what your own caregiver stress levels are is my website at slash quiz, where you will actually get the ability to do the quiz yourself or the assessment yourself to see where your caregiver stress is currently being precipitated from, what your biggest stressors are, because not all caregiver stress is created equally. But in any case, so this gentleman is sitting there and he is expressing to me that he has a lot of reluctance to take some respite care because nobody can take care of his wife who has Alzheimer's as well as he can. His daughter is sitting next to him, shaking her head the whole entire time, as well as his granddaughter. And you can see that he has as a supportive structure and family around him. He is not willing to let them help him because it's not done the way he would do it.

[4:55] So the topic today is dementia caregiving needs to be done. It doesn't always need to be perfect. So let us talk about what we're going to look at it under, let's see,

Understanding Perfection in Caregiving

[5:10] four different headings today. We're going to look at four different points. The first one is what is perfection or understanding what it means to be perfect. Now, I hate to break it to any of you guys if you think that you're perfect because none of us are perfect. And there is only one perfect person ever in the world. And that was Jesus Christ, right?

[5:40] He was sinless. He was perfect. And God is perfect. God is perfect in holiness. He is perfect in justice. He is perfect in truth. And none of us are perfect in holiness, justice, or truth. Romans 3 verse 23 speaks about all have sinned and fall short of the glory of God, which mean all of us. Every single person is not perfect. After the fall of Adam, none of us have been perfect anymore, and we fall short of the glory of God. So there is a significant unrealistic expectation for us as people to expect that our caregiving is going to be perfect, that we are are going to be perfect caregivers, or that the way we do caregiving is perfect, and the way anybody else does caregiving is wrong. And so the first thing I want us to understand is that perfection is God. We are not perfect, nor are we ever going to be perfect, and caregiving is never going to be perfect.

[7:04] Now, yes, there are right and wrong ways of doing things. I understand there are better ways of doing things. I understand that there are. But what I wanted this gentleman to understand from our conversation is that he needed to be able to take a break. His perfection related to how his wife is being cared for or underscored or did not allow him to actually take rest breaks, that he was actually doing both her and him a disservice. A large part of our conversation during the support group meeting on Tuesday actually had to do with how frequently, and it's most specifically, the spousal caregivers of somebody living with dementia, but there is about a 30% chance that a person's spousal partner of a person living with dementia will actually pass away before the person that they're caring for because of their stress levels. So that is a lot of people, right? That's a third of family caregivers.

[8:18] This actually occurs too. And I want us to understand that we have to manage and mitigate a caregiver's stress in order to help relieve some of that risk or alleviate some of that risk. So understand that God is perfect and we are not, and no caregiver is going to be perfect, including us. The second point I wanted to bring out today related to this specific situation, that our own unrealistic expectations of caregiving.

Unrealistic Expectations in Caregiving

[8:58] Set us up for failure. Now, what do you mean by that, Lizette? Well, what I mean by that is it is unrealistic for you as a caregiver to expect anybody else to do things the way you do them. You do things in a specific way because that specific way works for you. That doesn't necessarily mean that that specific way works for the other person. And we'll talk about that point here in a minute.

[9:33] But every person is different. Every person, the way we do things are different. Every person's relationship that we have with the person with dementia is different. And all of those things, all of those factors play into it. And I'll use this as an example. I'm left-handed and I will never forget one year I was at my mom and dad's house and I was wanting to help my dad clean up the kitchen after a meal. And I went to the kitchen and I put the dishes in the dishwasher the way I would put the dishes in the dishwasher because it's a dishwasher. There are multiple ways to load a dishwasher and I was so frustrated with my father after I had loaded the dishwasher. He literally went and unloaded the dishwasher and reloaded the dishwasher because it wasn't the way he wanted it to be done.

[10:36] The dishes would have gotten clean with the way that I had loaded the dishwasher. Now, would it been, was it the way he loaded the dishwasher? No, but there are multiple different ways of loading a dishwasher. It doesn't have to be done the same way. So for example, as a child, if we are teaching our children to help us and assist us in doing chores, and we constantly, And hopefully most of you guys as parents would have figured this out. But if we constantly make them do it the way that we do it, and it's not done to the way that we want it done, and we undo what they've done, what do we create in them? We create.

[11:22] Forced helplessness, that child is not going to want to help you load the dishwasher, will they? For example, with me, now I go to my mom and dad's house, my dad needs help in the kitchen, I won't go help him because the way I did it was not good enough. So he has really taught me enforced helplessness related to going and helping him with the dishwasher. Now the same thing can happen to us when we are helping, when we are the primary caregiver that is helping somebody living with dementia, when we have an unrealistic expectation of other people to do it exactly the same way that we're doing it.

[12:07] If you do that to the people who are willing to help you, you teach them over time not to offer to help you. Because why would I help you if everything I do to help you help the person living with dementia is not good enough. I'm not going to help you after a while. I've learned very quickly this forced helplessness because it appears that you're not grateful to the assistance that I am able and willing to give you. But that doesn't mean that we as the primary caregiver cannot learn ourselves to change our expectations and.

[12:53] And make it more realistic. It just means that we have to out loud say to ourself, my sister isn't going to do it the same way that I would normally do it, but the activity or the task is going to get done, and I don't have to do it. Therefore, done is better than perfect.

[13:17] We do not need to have everything be the way we want it to be in caregiving. The Bible also talks about the fact that we are mandated as Christians to help

Teaching Trust in Family Caregivers

[13:32] carry one another's burdens, because if we do not do that, it will lead to burnout and stress. So back to the caregiver I was talking about earlier on in the podcast at the Alzheimer's Association support group, he is in essence teaching his children and his extended network not to help him because whenever they do help him, it is not good enough. And so therefore, they are going to stop asking him if they can help. His expectation of being in a very particular way has actually set him up for failure, which is setting him up for increased stress, risk for burnout, and possibly being one of that 30% of spousal caregivers who pass away before the person that they are taking care of. One of the points we made during the support group meeting was that right now he is the primary caregiver. His wife lives with him. His daughter has her own daughter and I assume her own family.

[14:45] What that looks like, I'm not quite sure because it didn't come up in the conversation.

Importance of Building Respite Care

[14:49] But she is willing to help her dad, but she is still working. She has a kid, upper-level teenager. And so she's busy. She's the daughter of a mother with dementia, and she's willing to help. If her father passes away because of stress, because he does not want people to help him, then all of a sudden her life radically changes overnight because she will likely become the primary caregiver of that person because her father passed away because of stress. So we do need to consider this as we are working towards coming up with solutions to help decrease a caregiver's burden and stress, that we as the primary caregiver, if you are the 24-hour primary caregiver, need to realize that our own unrealistic expectations of what care looks like or the correct care looks like is setting us up for failure.

Vitality of Respite Care

[15:53] The next point that we are going to talk about which came out extensively in this support group meeting on Tuesday night is it is vital, important to build in respite care. Vital. It is not even a suggestion.

[16:15] Or a recommendation, it is a requirement. What is a recommendation? A recommendation means this is the better way to do it, but we recognize that there are other ways to do it. So therefore, we are recommending that you do something in a certain way. A requirement is something that has to be done that way. It is a rule. Think about it like the Ten Commandments, right? We are required to follow to the best of our ability the Ten Commandments. It is not a recommendation. It is not a suggestion. It is a requirement. It is just the same way related to dementia and dementia caregiving.

[17:03] Respite is a requirement. It is not a recommendation. The Bible encourages us to rest. Even Jesus in the Bible isolated himself and taught his disciples to rest. In Mark 6 verse 31, he says, come away by yourselves to a secluded place and rest. So there is a fabric in creation through God's work of creation. There is a pattern of rest that is included in the fabric of our lives. God created the world in six days, and then he rested.

[17:58] Every week, we are required, if you are a Christian, to keep the Sabbath day holy and have a Sabbath day rest. There are multiple places in the Bible which talk about sabbaticals, which talk about jubilee, which talk about the year of jubilee, those kinds of patterns of enforced rest. Respite is enforced rest. What are some of the benefits of respite? Respite will allow you as the primary caregiver, and typically what I mean by respite, I'm talking about somebody who is a 24-hour caregiver, somebody who is the primary person who is providing the day-to-day supervision and or physical assistance to somebody living with dementia.

[19:04] Some of the benefits are by taking rest breaks, you will actually increase the care that you provide, the quality of care that you provide. A lot of the research, and I do a lot of research related to dementia and dementia caregiving. I don't always bring out the numbers, but I do stay on top of what the research is and does. I teach a lot related to dementia for physical therapists, occupational therapists, and speech therapists. And so I develop a lot of courses related to dementia. And one of the things that I find really interesting actually supports the medical research. The higher the caregiver's stress levels, the more burnt out the caregiver is, the worse the quality of care that the person with dementia actually is experiencing and being provided, right? So respite, one of the benefits of respite is that it actually improves the quality of care that you as the caregiver are giving to the person that you are helping. A second benefit of respite is that it massively increases your bandwidth as a caregiver to deal with the daily challenges.

[20:31] When we are stressed, when we are overwhelmed, when we are frustrated.

[20:37] When we are not sleeping well, when we cannot take care of our own health and our own well-being, if we as the caregiver don't go exercise.

[20:49] If we as caregiver aren't eating well, if we do all of these, if we are not taking all of these things into account, we do not actually have the bandwidth to deal with the challenges. What does that then actually in reality look like? It looks like we are inadvertently, not inadvertently, what it results in is we are causing a lot of the things that we see, the challenges, because we're not able to control ourselves. Because we're not able to control our emotions. We're not able to control our own stress levels. We're not able to control our own responses to the person, which means that we have limited bandwidth and therefore we end up in stress.

[21:44] Deep, deep yogurt. When my children were little, we homeschooled them and there was a program and I forgot the name of it, but it taught them to write. It was a writing program. And the gentleman who presented it always said deep, deep yogurt. So it ends us, if we don't have the bandwidth to deal with the challenges, we as the caregiver end up in deep, deep yogurt. And another benefit of respite care is it will, if you structure it correctly, it will decrease your risk as a caregiver to actually burn out. It will decrease your stress levels as a caregiver, and it can possibly decrease your risk for being one of the 30% of family caregivers

Importance of Trusting Other Caregivers

[22:41] who die before the person that they are taking care of. The fourth point that we're going to look at today is that in order for you to have dementia caregiving that gets done, even if it's not perfectly done, is you have to trust other people.

[23:03] And I know when you are a 24-hour caregiver that is a spouse who has been living with this person for 54 years, 55 years, 40 years, 25 years, however long it is, I know that you know that person better than anybody else. But you have to trust that your family also knows and loves and wants to take care of your loved one, your spouse, that they want to take care of them to the best of their abilities too. But you have to be able to learn to trust other people, especially the family caregivers. We're going to talk about family caregivers, and we're going to talk about paid caregivers.

[24:04] There's definitely a difference. But if you are a spouse of somebody living with dementia, and you have children, adult children that are willing to come in and help, or a grandchild that is willing to come in and help. You have to trust that they too love the person that you love in a different way than you do, for sure. But that you have to trust that they have their best interests at heart and that they will take care of them to the best of their ability and that they will do everything they can to protect them from harm, because they love and care for that person.

[24:48] May look different to the way that you do it. But yet again, the topic of today's podcast is done, not perfect. Now let's talk about paid caregivers. I totally understand having a paid caregiver, whether it's a respite caregiver or a paid caregiver that comes in or a volunteer, hear somebody who is not a family member, that that does come with additional challenges or that comes with additional opportunities. One of the opportunities is that you can train them in the best way that you know works for you with that person that you're taking care of. Understanding that that method or that relationship that you have with that person is obviously not the same relationship that the paid caregiver has with your person. And so they may not get the same result. And so they might have to do things differently because their relationship with the person is different. I'll use one of my current clients as an example here. His wife is on hospice now, and he has a daughter-in-law who his wife implicitly trusts who can help her take a shower.

[26:17] The hospice aides are coming in, and they are attempting to help her take a shower, but she resists, and she's reluctant. They do not have a relationship. They do not have the same relationship with her and she doesn't trust them yet. So for weeks now, it's probably been about six weeks, he has been very slowly and incrementally building, having them build this relationship with paid hospice caregivers so that they can eventually get to the point where they can help her with a shower. She is clean. Her daughter-in-law helps her take a shower once a week and he hits the high spots and the low spots in between, she is well taken care of. And so we want to remember when we are a primary family caregiver that.

[27:10] The relationship that we have with that person is vital to how they interact with us. But that also spills over onto paid caregivers then. So if the person with dementia doesn't have that same relationship with the paid caregiver, you may not get the same result, which means that the paid caregiver might have to do things differently. And it might need to be done, but not perfectly done, and that that is okay. So a practical tip specifically here to help paid caregivers or other caregivers with your person is to actually write down their story, their preferences, their way of doing things, especially if you're going away overnight. night. The closer, the more detailed you can give the person about the respite worker, the paid caregiver, related to how things are being done, it can help to build that trust and that relationship for the person that you are helping with dementia, as well as the paid caregiver. So document your story. Document that person that you're helping, their story. Document the routine. Document what works, but also recognize and understand it might not always work in every situation.

[28:38] And that is okay. So here are four practical tips. That was a bonus tip, the one on documenting everything.

Practical Tips for Dementia Caregiving

[28:47] Here is a practical tip for you. Some practical tips related to dementia caregiving needing to be done, but not necessarily perfectly done. Number one is you. This episode is more for the primary caregiver who is the 24-hour caregiver. You need to set realistic expectations of what caregiving is. Caregiving is taking care of a person, making sure that their needs are met, that they are clean, that they are taken care of, that they have food in their stomach, that they don't fall on the ground, that they have as good a...

[29:37] A quality of life as you can. But if you're the primary caregiver and you're ensuring that that is done for the person that you love, because they're not able to do that for themselves anymore, but you're only going away for two or three days, it's okay if things are not perfect for two or three days, because you do need that rest. You need to get entirely away. You need to get away for several days sometimes in order to truly recharge and get a break. But managing your expectations, setting realistic expectations sets you up for success. The second tip is pray for wisdom to truly know what to let go of. Not everything is as important as everything else.

[30:29] We never ever and this may be a shock to some people to hear but we never actually have to take a shower or a bath to get clean many people for thousands of years only took sponge baths or you know it's got a couple of other names than a sponge bath but you can get clean by washing up at a sink or washing up with a with a basin of water you do not need to take a shower right so So we don't, if we are going away, if we need to take some respite, we don't necessarily have to require it for the person taking care of them to give them a shower. We just need to make sure that they are clean, right? So pray for wisdom related to what you can let go of so that you can actually build in respite. You need to, the third point is prepare for respite by teaching other people how to take care of that person who you are typically helping. And there are lots of different ways that you can do it.

[31:36] You can videotape yourself with the person as you're interacting so that the people who are helping can kind of know how you're interacting. Before you go away, you could take a couple of videos, have a grandchild come with a phone and take a video of you doing things with the person and you can give those, you can send those videos to the people who are the caregivers so they can see exactly what it is that you're doing. And then fourthly, the most important thing relating to this is you have to take rest breaks. And in taking those rest breaks, you have to schedule them. You have to pre-schedule them.

[32:23] You cannot just wait until you burn out because what then likely will happen

Embracing Rest and Recovery

[32:27] is you'll end up in the hospital and then everybody around you is in a crisis situation. So put it on the calendar, talk to the kids, talk to the grandkids, and build in these periods of time of respite because dementia caregiving absolutely needs to be done. I understand that. But it does not need to be perfectly done 100% of the time. Now, I know that today's episode was extremely valuable for you today because it is so easy for us to believe that we are the only ones that can do things the way they need to be done. And that is not true, dear family caregiver. I pray today that this episode has blessed you and given you a different way of thinking about respite and how caregiving needs to be done so that you can see that even if you're reluctant to leave the person alone because you are likely their best caregiver and you're likely lead their best advocate.

[33:48] You cannot do this 24 hours a day, seven days a week, 365 days a year. You cannot. Nobody can. So to recap today's episode, we talked about what it means to be perfect. We cannot be a perfect caregiver. We talked about unrealistic expectations of caregiving being perfect, setting us up for failure.

[34:18] We talked about how vital it is for us to actually have respite care. And we talked about what we need to do to cultivate a sense of trust in other people to provide the best care they know how. And we've talked about some practical tips and strategies for you to be able to do that. If you have not yet attended my free monthly workshop, I'm getting ready to change the topic of the workshop, but this month we are doing the last of the free workshops, live workshops on how to manage challenging dementia behaviors.

[34:59] So if you haven't attended that yet, please sign up. The link is in the show notes below. It is this coming Saturday, July the 13th at 10 a.m. Eastern Time. And if you sign up for the workshop, you will get the replay if you cannot make it. So go ahead and sign up for the workshop today. And remember, dear Christian caregiver, you cannot do everything perfectly. And it is okay for things sometimes just to get done. That is okay. My prayer for you today is that you truly take this episode to heart and not just head but to heart and understand that we need to build in times of rest and recovery for ourselves when we are a physical 24-hour-a-day family caregiver. And as a caregiver who is not yet a 24-hour caregiver, you also need to totally unplug and get away. My husband and I did it first weekend in July.

[36:16] I ensured my parents had what they needed. And then we went away for four days. And it was glorious. And it was wonderful. And I came back with a lot more energy, a lot more willingness, a lot less annoyance, all of the things that I know all of us struggle with as family caregivers. And thank you for listening to today's podcast. And as I try to remember to end all of my podcasts with, may the Lord bless you and keep you. And please come back, like and share these episodes with your Christian caregiver families and let me know what you like and what you don't like. I'm here to serve and I will see you in the next episode.

Lizette as a family caregiver

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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