How To Be The Best Caregiver For Your Spouse With Dementia
Did you know that 30% of spousal caregivers for people with dementia pass away before their loved ones?
This startling statistic highlights the immense challenges faced by spouses caring for partners with dementia. Let’s explore the unique aspects of spousal caregiving and strategies to navigate this journey successfully.
Understanding Spousal Caregivers
Spousal caregivers make up 30% of all dementia caregivers. They’re typically 60 years or older, with most between 70-80 years old. 60% are wives. Most still live with their partners at home.
Unique Challenges
1. Identity Shift:
Transitioning from an equal partner to a caregiver can be jarring. This shift impacts the relationship dynamics significantly.
2. Intimacy and Companionship:
Changes in physical and emotional intimacy can lead to feelings of loneliness and grief.
3. Role Reversal:
Taking on unfamiliar tasks previously handled by the partner can be overwhelming.
4. Communication Hurdles:
Adapting communication styles to accommodate cognitive changes is crucial but challenging.
Managing Well-being
Self-care is paramount for spousal caregivers. Here are some essential steps:
1) Schedule respite care
2) Prioritize exercise
3) Attend your own medical appointments
4) Pursue hobbies and leisure activities
5) Join supportive communities like our Facebook group:
Planning for the Future
Consider these critical aspects:
1) Envision your life post-caregiving
2) Define your best outcome for this journey
3) Prepare for potential 24-hour care needs
4) Identify your “line in the sand” for seeking additional help
Types of Spousal Caregivers
Hands-on caregivers: Provide daily physical care
Care directors: Manage care but don’t provide hands-on assistance
Key Takeaways
Spousal caregiving in dementia presents unique emotional and practical challenges. By focusing on self-care, planning ahead, and seeking support, spouses can navigate this journey more effectively.
Remember, it’s okay to ask for help. Your well-being is crucial not only for yourself but also for providing the best care to your loved one. Stay connected with supportive communities and don’t hesitate to reach out when you need assistance.
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
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.
[0:02] Have you heard the scary statistic of how many spousal caregivers of somebody living with dementia actually die before the person that they’re taking care of? If you are at least a little bit curious about what that statistic is, I invite you to listen to today’s episode where we’re going to talk about how to be the best caregiver of somebody with dementia as a spouse. This starts a mini series of the three different types of caregivers that we have and dementia caregivers. There are actually three categories and each episode is is going to unpack one of these. This episode today is related to spouses. If you are a spouse, since we’re talking about spouses today, I’m going to invite spouses of people living with dementia who are struggling to please consider joining my next Ask the Dementia Coach segment. It is a part of the podcast. We don’t have to put your name in. We don’t have to put identifying factors in, but you do need to agree to come onto the podcast and then you can ask me questions.
[1:23] The next Ask the Dementia Coach is on the 25th of July at 6 p.m. Eastern time, and then it will be aired on this podcast, but you are welcome to sign up. The link to register for the Ask the Dementia Coach monthly meetup is in the show notes. So I do want to serve you. I invite you to sign up for the Ask the Dementia Coach opportunity or monthly meetup using the link in the show notes. And now, with no further waiting or ado, here is the next episode.
Mini-Series on Caregiving Types
[2:09] Hey, Christian caregiver, welcome to today’s episode of the podcast, Christian Dementia Caregiving, where we teach Bible-believing Christians that they can still have hope as well as where to find help despite a dementia caregiving journey, because even though dementia caregiving isn’t always easy, it is actually quite simple. We have a special episode series. I’m doing a mini-series this week on how to be the best caregiver of somebody with dementia, and the three different types of caregivers are going to result in the mini-series. So the first type of caregiver is a spouse.
[2:58] Then it is going to be an adult child of somebody living with dementia. And then lastly, a category that we don’t think about often, which is called young adult caregivers. So I am very excited about this mini-series. It kind of came about because I am preparing to do a professional presentation in August in Florida, where one of the topics is about caregivers and the three different types of caregivers. So I put together this mini-series specifically for you related to that. And then as I’ve continued to work more individually with people and not in a healthcare provider capacity, but as a dementia coach, I’m recognizing that these three types of caregivers actually have vastly differing needs. And so today we are going to unpack how to be the best dementia caregiver if you are a spouse.
Recognizing Differing Caregiver Needs
[4:05] So I always thought being a caregiver was just that, being a caregiver. When you work in healthcare and you go in and it’s a spouse or a daughter or a sibling or whatever family relationship or paid caregiver you have with that caregiver, You’re always coming at it from the perspective of the paid professional caregiver, and your job is to just educate that particular family related to your particular therapy, modality, exercises, whatever it is. But the reality is that now that I’ve stepped away from that, I truly have recognized that each one of these caregiving people, whether it be a spouse, an adult child, a young adult caregiver.
[5:02] Each of them have vastly differing challenges. Each of them have vastly differing needs, and each of them have vastly differing solutions in order for them to become an effective caregiver. And so there are really three primary types of caregivers, spouses, adult children who are just caring for parents. For example, they may not have a spouse or they may be a married couple who don’t have children of their own. So they are caring for their parents, but they are the adult children of somebody living with dementia. The other secondary category of adult children living with dementia are the ones who are the adult child and they are married and they may still have children in the house or they may have their own children are grown and flown and they are adults and they want to be a part of their lives. That adult child might be divorced, but they still have multiple different challenges just for being the adult child. The third category is a young adult caregiver. And these are typically maybe siblings. They could be parents. They could be the grandchildren.
[6:30] I have a grandchild in one of my programs who is helping his grandmother and he is an awesome, awesome person. And so each one of these caregivers have their own unique set of problems, and each one of them has their own unique station.
[6:49] The Westminster Shorter Catechism in question and answer 64 speaks about, this is where it talks about the fifth commandment. And if you guys can actually hear this on the recording, I’m going to mention it. We have a sick rooster. And so I have a rooster in my kitchen that keeps crowing and gets me all flustered because I’m like, oh, is the sound picking up the rooster?
[7:16] So if it does, you understand why I have a rooster crowing in the backyard, or actually in my kitchen. So what is the fifth commandment? The fifth commandment is, honor thy father
The Fifth Commandment and Caregiving Roles
[7:27] and thy mother, that thy days may be long upon the land in which the Lord God gives you. And then what is required? And this is what we are going to talk about today. What is required in the fifth commandment? The fifth commandment preserves the honor and performing the duties belonging to everyone in their several places, relations, as superiors, inferiors, or equals. So depending on your relationship, whether it be a spouse, you are equals. If you are a parent, you are superior, not in value, but in station. If you are a grandchild, you are inferior because you’re likely not the one making the decisions. And we’re not talking about value, we’re talking about stations.
[8:27] We’re talking about what it means to be in different relationships. And for example, in government, right, the president has a higher authority over us mere mortals, and so we have a different station. We’re equally created the same in the image of God, but related to our differing places and stations, it changes how we are a caregiver. So this is just as an introduction to today’s episode and to the series. So in the mini series, we’re going to look at each one of these differently. We’re going to look at how we preserve honor and how we perform the duties in these different stations.
Statistics and Challenges for Spousal Caregivers
[9:20] So today’s episode has to do with spouses. I thought it would be fitting for us to talk about, firstly, some statistics to actually understand the role. Did you guys know that 30% of caregivers are actually spouses?
[9:40] And if they are a spouse, they are typically 60 years and older, with most of the spousal caregivers being between 70 to 80 years old. And that 60% of those spouses are typically wives. Wives carry the brunt, or females. Females carry the brunt in actually all three categories, but we’ll talk about that later. And of those spousal caregivers, another statistic is that most of them still actually live together. What does that tell me? That tells me that most people living with dementia are not actually in an institution. Most people living with dementia or living at home. It is very much a misunderstanding or a myth that if you have dementia, you will be placed in a facility because for the most part, the spouses are still living together.
[10:42] About 50% of those spouses have a high depression or anxiety and or feel super, super overwhelmed. And that bears with what I see when I’m working with family caregivers. They are overwhelmed. About 40% have physical impact of caregiving on their own chronic health conditions that actually get exacerbated because they are not going to the doctor or because of their stress. And oftentimes, these spousal caregivers are experiencing or feeling financial strain. And most of the time, most of them report feeling isolated due to limited support. So those are some scary statistics, specifically if you’re a spousal caregiver, right? And so if you are a spousal caregiver, I hear you. I know you are are there, and we need to do better to help support you, specifically in the churches.
[11:54] So what are, the second point today is, what are the unique challenges specific to spousal caregivers? Not all caregivers, but the unique challenges for a spousal caregiver. There is a a massive shift in identity from spouse or partner.
[12:18] Equal in the relationship to caregiver. That is one of the biggest challenges that I see my spousal caregivers experience is that change in identity going from spouse to caregiver, because it changes dynamics in the role of the relationship. Another unique challenge of a spousal caregiver is there is a change in intimacy and companionship. And we don’t talk about that a lot, you know, because, ooh, talking about sex is not sexy when you’re thinking about somebody being in their 70s or 80s. Well, it still happens. And we have to recognize that these couples who might have been together 40, 50, 60 years are losing their intimacy, even if it’s just closeness intimacy or companionship. And this can precipitate significant feelings of loneliness and grief starting before the grief process. We all grieve when somebody we love dies, but it is a different type of grief when somebody we love dies suddenly and unexpectedly.
[13:45] There’s different challenges that we have when that occurs than watching somebody slowly change over time and anticipating that loss for an extended period of time as you’re going through this caregiving journey. And another unique challenge for spouses is that there are significant changes in the physical realm. I’m not talking about what we look like, even though, you know, as we get older, we don’t look the same. Things aren’t exactly where they used to be when you’re 21. one.
[14:20] But I’m talking about physical demands related to roles. I’ll use my husband and I as an example. I’ve always been the one that pays the bills, not because he’s not capable, but because I pay the bills. I don’t know. It just happened that way. I am not gifted and wired in fixing things. I joke all the time that my children are going to have to come help me because I break things if I try to fix them. And I’m not really good with putting things together. My kids can put things together. They know how to, their dad taught them well. My husband earlier today is fixing, we live in a duplex that we own. Our neighbors are out of town. He’s fixing the toilet. And I look at it and I’m like, I would have had to pay for somebody to come do that. So there are changes in roles. There are changes in tasks.
[15:16] And so the types of tasks that we might have needed to do. So maybe all of a sudden, if something happens to me, my husband’s got to pay the bills. And that’s a change in his task and in his role that he’s never needed to do before. And sometimes, you know, that can create senses of frustration, maybe a feeling of abandonment because you’ve always been able to do that. All sorts of different dynamics in a spousal relationship. Then there’s a significant change in how we communicate with our partners. When you are married, you get into a habit pattern of communicating in a specific way.
[16:01] I’ll never forget my sister recently. Well, it’s probably been a couple of years now, but my sister mentioned to me that once after coming to visit my mom and dad, who have a very, very bad dynamic in communicating with one another, always have. I joke, they bicker. They bicker all the time. They don’t talk to one another. They bicker. It drives me nuts because my husband and I are not like that. Well, my sister came and visited and recognized that her and her relationship with her husband was headed down the same way of communicating with one another. And they decided to stop. They decided they did not want to live like that. And they have totally changed how they communicate and their relationship with one another has significantly improved because of a decision to change. But we all have a habit pattern of communicating in a specific way.
[16:59] So if you are now trying to communicate with somebody who has, number one, lost the ability to communicate the way they always did. Number two is not remembering things. Number three is maybe perhaps way more emotionally in tune to what you’re saying than they used to be. And number four, you can’t reason with. All of a sudden, it massively, significantly changes how people communicate with one another as a spouse. So that can be a unique challenge if if you are a spouse as a caregiver. Did you know that caring for a person with dementia doesn’t have to be this hard? If you are struggling and you would like to join our next free workshop.
[17:52] The topic of the workshop is three tips how to avoid challenging dementia behaviors, without stress, anxiety, or burnout. I invite you to walk away with science-backed dementia caregiving skills that many professionals don’t even know after attending this free workshop on Saturday. If you’d like to register, message me the word workshop on Instagram or check out the link in the show notes below.
Managing Emotional and Physical Well-being
[18:40] The third point we’re going to look at today is how to manage emotional and physical well-being. And I know I harp on this all the time, but it is vastly important because about 30%, it’s really hard to get the numbers. I’ve seen between 18, 41, 63% of caregivers who are typically spouses of somebody living with dementia who actually pass away before the person that they’re taking care of. So I just use the number 30% because it kind of is a little bit more understandable to me than the 63%, even though I have seen that I couldn’t find it again. But about 30% of spouses, somebody living with dementia, has a specifically high risk for death before the person that they’re taking care of. So what I want to invite you today, if you are a spousal caregiver of somebody living with dementia, and even if you’re not, if you’re anybody listening to this and you’re concerned about your stress levels as a dementia caregiver, I invite you to message me on Instagram or on Facebook in the messages, direct message me the word quiz.
[20:02] Just the word quiz. is. And it is an automation. It will send you a link directly to your app, your phone, that you can just go to.
[20:16] Take a quiz to actually see what your caregiver stress levels are. It is vital, vital for you to take care of your stress levels. I cannot emphasize that enough. So go ahead. It’s free. It’s quick. It’s down and dirty, but it is evidence-based. So I invite you to message me only the word quiz, nothing else, just the word quiz. You need to also schedule and actually do do the following tasks. You have to schedule respite. That means put it on your calendar and then you have to go. You have to schedule exercising.
[21:01] You need to put it on your calendar or a part of your daily routine and actually do. You need to actually schedule and then go to your own doctor’s appointments so that you can maintain your own health and physical well-being through this process. And this is vitally important.
[21:25] The research actually shows one of the biggest things that caregivers struggle with is the feeling that they do not have the time to actually do something that they want to do. Not tasks that they have to do, but activities that they want to do. So you need to schedule and attend or do your own hobbies, your own leisure activities. It is vital for your emotional as well as physical well-being. One of my clients, he rides a bike, and now he is scheduling more frequent rides on his bike for his physical and his emotional well-being. And then another great tip for under emotional and physical well-being is really to join a community, right? And not just any community, but to join a community that is edifying, that is positive.
[22:40] Not toxic positivity, not just saying, oh, everything is okay, because we do recognize dementia caregiving can be hard. It can be easier and it can be simple, but you got to know what to But if you join a community, there are free Facebook communities. Be very discerning, dear friend, to use Facebook.
[23:02] Choose the right Facebook group. I do have a Facebook group. The link is in the show notes. It’s called Christian Dementia Caregiving, kind of made simple, related to the name of the podcast is the name of my Facebook group. But I work very hard on trying to keep it edifying. But there you can find support of other people going through this journey together with you. It needs to be be a positive community.
[23:28] Be very careful of Facebook groups where everybody just goes in and does the verbal vomit. Those are not edifying. Those are not helpful. Those are not healthy. And then make sure that whatever community you join is actually supportive and educational. Now, I do have a paid group coaching program specifically that is positive, supportive, and educational. If you are interested in finding out more about the group coaching, because in that we do actual face-to-face group coaching, I invite you to schedule a call and we can work through whether you’re appropriate. Because I don’t just let anybody join. Because what happened when I just let anybody join was the wrong people would join with the wrong attitude and would poison the well. And so now I actually screen people before they can join the community. It is an investment. It is something that you need to invest in yourself. But we curate the content. We work very hard on keeping it positive and work on the actual skills that you as a spouse need.
[24:53] To have in order to be an effective caregiver.
Tips for Managing the Caregiving Journey
[24:57] So if you’re interested, hop on a call with me and we can talk about what that looks like. And then the last thing that we’re going to look at today is how to manage a caregiving journey. And specifically, if you are a spouse, there are two different types of spousal caregivers. And I’m just going to explain them in this specific way. One is the actual physical hands-on caregiver, the care provider. So this is somebody, husband and wife are living together. The spouse is the actual person providing the daily care, the transfers, the bathing, the feeding, all of the activities that need to come about in a dementia caregiving journey. But they are different. These two spousal caregivers are different.
[25:54] The other spousal caregiver is somebody I call a care director. And they are a person who, who, for whatever reason, either financial, they can afford to pay for caregivers, and they are just directing the care. They’re not actually providing the day-to-day physical caregiving.
[26:18] They are directing the entire journey. Or they could be a spousal caregiver of somebody who is in a facility and as such are not the day-to-day actual physical caregiver, but they’re still directing their spouse’s care. I think of a person I’ve met online for years and years and years. Her husband is in a skilled nursing facility and she is his care director, his care manager for lack of a better term. She actually makes sure that he is taken care of. She’s his advocate. But care director is a different spousal role than an actual hands-on caregiver. As we’re managing a dementia caregiving journey, specifically as a spouse, we need to look at the following four things. You need to look and consider as a spouse, what do you want your life to look like after dementia caregiving. I always say, begin with the end in mind.
[27:25] So if you are 60 years old and you’re in this journey for five years, when you’re 65, what do you want to look like? What do you want your relationships to look like? What do you want your own health to look like? What do you want your own emotional health to look like? All of these things you need to know and understand, dear Christian caregiver, that there is a a life after caregiving. It is not just a life of caregiving, but there is a life after caregiving. At some point or another, all of us know those things. When we get married, we know, unless we both pass away at the same time in a car accident or something like that, we come into this relationship understanding that likely one of us is going to outlive the other. So we know that one of us is going to be a widow or a widower. We know that if you are spouses. So you have to know what you want your life to look like after a dementia caregiving journey.
[28:35] Then I also want you to ask this question. What is your best outcome of your journey? So now you’re standing six months after the person who you have lived with for 40 years, 50 years, 60 years. You’re on the other side or a year out after this journey and you’re looking back on your dementia caregiving journey, what was the best outcome for you and for the person that you were caring for? Was that you maintained your health for yourself, that you maintained your relationships, that you were always able to keep the person that you love at home? What does that look like? Like, what is that best outcome? The third thing I want everybody to hear, and hear me well and hear me clearly, is.
[29:29] Because we do not say this early enough, nor do we say it often enough. But if you are somebody who has been diagnosed with dementia and you live long enough, you will need 24-hour care. That’s just the reality. So we have to start to say that earlier and we have to start to plan for that earlier. So if you are a spouse who has just found out your spouse has dementia, you need to start to think about if they live long enough, they are going to require 24-hour care and one person cannot do it alone. You cannot. Nobody can do 24-hour care alone. It’s not possible.
[30:16] And those are the spouses that die. So I beg you to start to plan ahead for what your 24-hour journey, 24-hour care is going to look like if or when you get there. And then you also, the fourth thing related to planning ahead that I want you to think about and consider is the following, that there is a line in the sand. And what is your line in the sand? For some people, it is a spouse that becomes physically aggressive or abusive or a spouse who physically cannot transfer a husband who’s six foot four and 300 pounds because she’s 90 pounds and five foot three. So we have to know what that line in the sand is and then go back to thinking about the best outcome, what you want your life to look like, and how do you plan ahead head for that should that occur.
[31:19] So today’s episode was very different. I’m trying a couple of new things. I’m trying to stand. I’m not quite sure what I think about that, but I really just wanted to bring this mini series to you right now about how to be the best caregiver of somebody living with dementia. And we’re going to do it in a three-part series. Wednesday, when the next Next episode comes out, will be the adult child, and then Friday will be the young adult caregiver, because all of them are a little bit different. But to recap, we talked about some statistics, and the scariest statistic is 30%.
[32:00] Of spousal caregivers die before the person they’re caring for. We looked at the unique challenges which are different for each of these caregivers. We looked at the unique challenges that a spousal caregiver has. Then we looked at how to maintain your own emotional and physical and then never to be forgotten your spiritual well-being in this journey. I didn’t focus on the spiritual component of it today because I do that a lot of the other episodes. I really wanted to do a down and dirty episode related to the different type of caregivers. And then lastly, we looked at how to manage the entire caregiving journey. So I hope, and actually, I don’t hope, I actually know that these episodes are extremely valuable. And I know that you walk away from this with functional, practical strategies that you can use in your caregiving journey.
[33:04] And I know that I pray for you every day and that I want you to let me know how I can serve you better because I really am here to serve you, my dear Christian caregiver. So if you feel inclined, please go to Apple Podcasts and leave me a review on Apple Podcasts. that really does mean a lot to me. I do read them. I love communicating with people. So that’s a very quick and easy way for you to let me know that you like what I’m doing and let me know what you would like to hear more of. I do want to serve you as Christian family caregivers of people living with dementia. And as I end all, or try to end, if I remember all of the programs, may the Lord bless you and keep you, and I will see you back here in the next episode on Wednesday.
