Spousal Caregivers and Caregiver Resentment – The Caring Generation®
The Caring Generation® – Episode 34 April 15, 2020 On this caregiver radio program Pamela D. Wilson, caregiving expert talks about Spousal Caregivers and How Caregiver Resentment Can Enter Into Relationships Between Husbands and Wives. Guest Dr. Yuting Song from the Faculty of Nursing University of Alberta Canada answers the question How Can We Improve Care for Nursing Home Residents?
To listen to the show, click on the round yellow play button below. To download the show so that you can listen anywhere and share it with family, friends, and groups, click on the button (fourth black button from the left) below that looks like a down arrow. Click the heart to go to Pamela’s Spreaker podcast page and receive updates each time a new podcast is posted.
Spousal Caregivers and Caregiver Resentment Radio Show Transcript
00:04 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 are 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.
00:46 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves and loved ones, all tied together with humor and laughter that are essential to being a caregiver. Our topic for this radio show is being a spousal caregiver. Being a husband caregiver for a wife and vice versa, a wife caregiver for a husband. Many people assume that spouse caregivers have help if they have adult children. Adult children help as caregivers in only about 60% of spousal caregiver situations. In the other 40%, caregivers may be hired, and in a large percent, the spousal caregiver is considered a solo caregiver.
01:42 Pamela D. Wilson: A solo caregiver means that no family is helping, and no caregivers are hired or paid to help. Research confirms that wives are less likely to involve adult children and are less likely to hire any type of help. The majority of caregivers are women, 60% to 40% men. Female caregivers suffer greater emotional stress and become sicker than the husband for whom they care, versus the opposite, husbands who care for wives. Which translates to the statistics confirming that more women at the end of life live in nursing homes. Other statistics confirm that solo spouse caregivers cite being unprepared for the role of caregiver and having a lack of knowledge about all the daily tasks to be completed as being very stressful. Knowing this, it seems as though women spousal caregivers sometimes place themselves at a disadvantage because they refuse to seek help. Listeners, what do you think? Is this true?
How Does Caregiving Stress Affect The Brain and Making Good Decisions?
02:47 Pamela D. Wilson: On the subject of women in nursing homes, our guest for this program is Dr. Yuting Song, a postdoctoral fellow at the Translating Research in Elder Care Program, in the Faculty of Nursing at Alberta, Canada. She holds a PhD in Nursing from Duke University and a Bachelor’s Degree in Nursing from Shandong University in China. The focus of her research is improving the quality of care and life for residents in nursing homes and the quality of work-life for nursing home care staff. Dr. Song joins us in the second part of this program. Back to the subject of spousal caregivers and caregiver resentment that can creep into marital relationships. There are four areas that spousal caregivers have identified to be of concern. These include providing direct care. This means hands-on care with activities of daily living like bathing, dressing, eating, toileting, transferring, and mobility. The second area of concern for spousal caregivers is the change in the marital relationship.
03:55 Pamela D. Wilson: Spouse caregivers tell me that they no longer feel like a husband or a wife. Husband caregivers for wives and the opposite, wives who care for husbands say that they feel like a maid or a cook or a care worker constantly doing nothing but tasks all day. The third area of stress for spouse caregivers is the idea of feeling restricted. That the caregiver’s life has been tossed upside down, feeling that nothing is or ever will be the same. The fourth area is a deep sense of loss, described as feeling depressed, isolated, and lonely. You will hear me repeat and repeat that it is very difficult to understand the experience of another caregiver until we have a similar experience. Spousal caregivers tell me that they feel isolated and unable to talk to anyone about their feelings, including their adult children who they feel won’t understand. A concern exists by mom or dad about saying anything about the spouse who needs care for fear of being perceived as negative, disrespectful, or being a complainer.
05:06 Pamela D. Wilson: This leaves mom or dad in a terrible place, having no one to talk to in the family. Add to that factor, women spousal caregivers who don’t seek help or participate in any type of caregiving support program. Caregiving can feel impossible. This theme, not seeking caregiver support, not wanting help from adult children, not wanting to hire help, and feeling totally unprepared for being a caregiver is—it results in that feeling of overwhelm for spouse caregivers. When we look back at spouse caregivers in their 60s, 70s, and 80s, what do you think that these people have in common? The commonality is experiencing a change in health for themselves, the caregiver, but a greater change in care for that spouse who needs care. A diagnosis of chronic disease that results in daily challenges and more bad days than good days is. It’s a life-changing experience. Hands-on care for spouse caregivers results from physical injuries or disability and the diagnosis of one or more chronic diseases.
06:16 Pamela D. Wilson: When a husband or a wife can no longer complete simple daily activities because they don’t feel well or they feel physically unable to perform the task, that spousal caregiver has no choice but to step in and take over. Within the area of providing direct care or disagreements between husband and his wife about health concerns—one spouse may worry and want to take every step—every measure possible to make things better. The sick spouse may be apathetic and lack any interest or desire to help out. This difference in a desire to participate creates caregiver resentment by the spouse caregiver who wants life to return to the prior relationship state where both spouses were healthy, and caregiving wasn’t even a consideration. Hands-on care also involves nursing-type tasks, like taking blood pressure, blood sugar, helping manage insulin, making special diets, managing incontinence care, using transfer lifts, and for some, responding to unexpected behaviors of spouses who have cognitive diseases like Alzheimer’s disease, dementia, Parkinson’s, brain injuries, and other neurological disorders. Some of these are honestly the most complicated care situations.
07:38 Pamela D. Wilson: Then we have chronic disease. The more complicated that managing chronic disease becomes, the more difficult it is to be a spousal caregiver trying to manage it all. The hands-on stage of care is when caregiver resentment begins and increases. Caregivers who are unaware of the four stages of caregiving find it more difficult to adjust as care needs continue to grow and grow and grow. More information about the Four Stages of Caregiving is featured in an article in my caregiving blog. Visit my website www.PamelaDWilson.com and click on the tab in the top bar that reads Caring For Aging Parents Blog. Up next, Dr. Yuting Song joins us to answer the question, “How can we improve care for nursing home residents?” Podcast replays of The Caring Generation radio show are available on my website. Go to www.PamelaDWilson.com, click on the Media tab, scroll down about four, and you will see The Caring Generation radio shows. They’re also available on your favorite podcast sites, Apple podcasts, and Google podcasts. This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation coming to you live from the BBM Global Network channel 100 and TuneIn radio. Stay with me. We’ll be right back after this break.
11:20 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host, you’re listening to The Caring Generation coming to live from the BBM Global Network Channel 100 and TuneIn Radio. With us is Dr. Yuting Song, a Postdoctoral Fellow at the translating research and eldercare program in the Faculty of Nursing at Alberta, Canada. Dr. Song, thank you for joining us.
11:43 Dr. Yuting Song: Yes, sure. Hi, Pamela. I’m glad to be here.
11:47 Pamela D. Wilson: Your research indicates a very strong interest in the idea of improving care in nursing homes. What led you to this interest in nursing homes?
11:57 Dr. Yuting Song: You know, Pamela, it really dates back to my volunteer experience in Mainland, China, when I was an undergrad student. That was my first exposure to nursing homes. After that, I visited a nursing home in Hong Kong as an exchange student. The visible contrast of the two nursing homes inspired me to understand why there was the difference and what impact it has on quality of care, quality of life. The two nursing homes at that time was different in terms of the physical environment, residents’ physical functions, and whether or not—to what extent from staff were available. And now, in reflection, they differed in several aspects. Such as a mission criteria—a difference in Mainland, China—I have seen nursing homes that were reluctant to admit people with cognitive impairment, because they don’t have enough staff or they don’t have staff who know how to provide adequate care for this population. So, that’s why you can see residents with relatively high independence levels in Chinese nursing homes.
13:22 Dr. Yuting Song: The second difference is that there’s lack of professional staff. Because as you can imagine, well, it’s kind of similar in North America, but to a larger degree in Mainland China. The work conditions are less favorable in long-term care compared to acute care. And then the regulation for nursing homes are quite—at least at that time were quite sketchy in Mainland China.
13:53 Pamela D. Wilson: And that was really how I found out about you. I found an article where you were in China doing this study, and it seems like now you’re in Canada. So do you see differences between China and Canada? Because here in the United States, we have a lot of the issues that you mentioned with the lack of training and difficulty knowing how to work with people with memory loss.
14:16 Dr. Yuting Song: Yes, yes. As I said, there are a lot of—quite a lot of similarities between the two contexts. For example, the care aides in both contexts, they provide the majority of direct care. So they are in very important positions to affect quality of care or quality of life. And also, they generally have very heavy workload. They are not well paid. They do not usually, do not receive lots of training. But in both contexts, they are highly motivated and feel their work is meaningful. And this is my research area—and missed care, rushed care is common in both of the contexts. And also, care aides are also at the bottom of the hierarchy. Although they have first-hand knowledge of residents, their voices are usually not heard. And I also noticed some differences such as resident characteristics, as I just said, and regulations are different too.
15:26 Pamela D. Wilson: Well, and talk about social relations and help, because you talked about the way that personal relationships affect help. Can you share a little bit about that?
15:36 Dr. Yuting Song: You said personal relations?
15:38 Pamela D. Wilson: Personal relationships, so either the relationship between the caregiver and the person they’re taking care of, or family relationships in these aspects?
15:47 Dr. Yuting Song: Right, sure, yes, that’s a very good question. So now, if you think about that—care aides—their role is in nursing homes, so they provide up to 90% of direct care. At least, that’s in the Canadian long-term care homes, that’s the case. So they spend most of the time with residents, and they are a very important part of resident’s social networks in nursing homes. But what I see in my research is that they also don’t have the time to talk with residents, or yes, they only have limited time to talk with residents. So, as you can imagine, that will affect resident’s quality of life and might contribute to their loneliness. As you know, loneliness is a very widespread issue in nursing homes. And now, family members can—they can play an important role. This is the network beyond the nursing home setting. So it’s very important for the residents. But we also know that some family members never show up, and some residents, they do not have any family members or they do not have friends. This population is rarely studied, and we don’t even know how many of them are out there—those without family members or without friends or family members never show up. And we have started to study this population. And yes, we often see these are the most vulnerable among the most vulnerable.
17:28 Pamela D. Wilson: We have the same issues here in nursing homes where some people just don’t have anybody, and it is up to the care staff to make those relationships. So, in Canada, do the nursing homes allow extra time for the care staff to talk to patients, or there just isn’t enough time?
17:45 Dr. Yuting Song: Oh, yes. I think it’s always encouraged. We know it’s important, but it’s certainly not the care aide’s fault, right? They have so many tasks to finish. And it’s not also not the fault of long-term care homes. Like we have seen increasingly complex care needs from the residents, but the funding level has been constant and not increased as much. So, there’s a lack of time, certainly, for the staff. And when they have to prioritize what they can do—if you think about it—they need to choose from bathing, or help residents to eat, or go to a toilet. Between that and talking with residents, talking is usually sacrificed.
18:42 Pamela D. Wilson: Yes, we see the exact same thing here. We will continue our conversation with Dr. Yuting Song coming up after this break. Helpful information for caregivers and aging adults is in my caregiver blog and my caregiving library on my website at www.PamelaDWilson.com. This is Pamela D. Wilson, your host for The Caring Generation live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
21:27 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. You’re listening to The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM global network channel 100 and TuneIn Radio. Let’s continue our conversation with Dr. Yuting Song. So, Dr. Song, here in the United States, we have a lot of caregivers whose second language or their primary language is not English, and so their English is kind of a second language to them. Do you have the same in Canada? And how does that affect the relationship between the caregivers and the people living in the nursing homes?
22:03 Dr. Yuting Song: So that’s similar in Canada in most of the regions we have seen. At least in our data, it shows that over 60% of care aides, they speak English as second language, and we see their outcomes or quality of work-life sometimes differ from the others. And we are trying to understand why. But just one example, if you don’t speak English as a first language, but the residents might not share the first language with you—not share the same first language with you— and you might have communication barriers with each other. And remember, most of the residents have cognitive impairment. That might trigger some responsive behaviors from the resident’s side, and we know that the resident’s responsive behaviors can in turn, can come back, can affect missed care or rushed care. Because staff might want to well, rush through the task because, well, the resident has a behavior, so it’s affecting each other, and definitely an important factor.
23:28 Pamela D. Wilson: Talk about how the work environment for the care staff affects care.
23:34 Dr. Yuting Song: So yes, that’s an important question. There are many matters of working environment actually, and the matter is slightly different aspects of working environment to track. We use a tool called the Alberta Context Tool that show matters can affect with work environment such as culture, social capital, formal and informal interactions, amount of staff, so we ask the care aids to rate their own perceptions of work environment. And then what the scores we get, reflects how care aides feel about their work environment. We looked at how missed or rushed care differ by their work environment and it turns out that that care aides in more favorable work environment reported less missing or rushed care tasks. So, I want to emphasize that these other essential care activities that we ask such as helping people to eat, to dress, to bath, mouth care, walk, talking— we just talk about that. So as you can see, these tasks are really essential for the quality of life for these residents.
24:57 Pamela D. Wilson: And we were similar in the idea of missed care and rushed care. I would have caregivers who would go in and say, “Oh Miss Smith are you hungry?” and Miss Smith would say “no”, and so they would go off and leave her. So if you can develop a training program for a nursing home care staff, what would you focus on?
25:13 Dr. Yuting Song: At TREC or translating research in elder care. In this research program, we actually have an ongoing intervention with nursing home care staff. So what we do is we teach the care aides how to kind of carry out quality improvement, small projects. Because we believe they’re in critical roles in resident care, and they believe they can make a change in resident’s quality of life. What we did is we have the care aides from different sides come together to what we call learning congresses. They encourage them to kind of step out of their traditional rules, which are usually task-oriented, and we teach them some knowledge and tools to lead change or quality improvement. Because they’re coming together, so they also learn from each other and share their experiences and after that—they go back to their side and do the projects—try them out and usually focus on critical aspects of resident care such as pain, responsive behaviors, improving their mobility, and we also recognize formal leadership and family members is important to be onboard. Because if we only encourage the care aides, but formal leadership is not supportive, that would not work in the long run. So in this way we are trying to kind of encourage or engage the care aides in more activities, so they can make better use of their first-hand knowledge.
27:04 Pamela D. Wilson: And you mentioned the family members, what, do you have suggestions for family members who visit their loved ones at nursing homes?
27:13 Dr. Yuting Song: Yes, the first thing I would definitely ask is, please be understandable and empathetic to our front-line staff. Most of the time, it’s not their fault—even if you saw missed or rushed care. And as I said, it’s probably not, usually not the front of long-term care homes. And family members feedback really make a difference. Also, if family members can make use of opportunities to advocate for better resident care, that would be wonderful. Like they can join advocacy groups. They can speak out. They can volunteer if they can. They can even talk to politicians at different levels. We attract, we also have a voices group. These are the people who have dementia or family members who have nursing home residents, or who have dementia. So these are the different opportunities for family members who’ve got involved in resident care.
28:24 Pamela D. Wilson: Dr. Song, thank you so much for the insight and the information. I do agree that family members working with care staff—who are so overworked and unappreciated— make situations so much better. Listeners, helpful information for caregivers is on my website at www.PamelaDWilson.com. After this, we will continue our conversation about spousal caregivers, you’re listening to The Caring Generation live on the BBM global network channel 100 and tune in radio. Stay with me. We’ll be right back.
31:08 Pamela D. Wilson: This is Pamela D Wilson caregiving expert, I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults, coming to you live from the BBM global network channel 100 and TuneIn radio. The Caring Generation is the place for tips about health, well-being, and caregiving podcasts of this, and all of the past programs are on my website, at www.PamelaDWilson.com. Let’s return to our conversation about the challenges of being a spousal caregiver when caregiver resentment begins to overshadow love and care for a husband or a wife. We’ll continue to talk about situations so that as a spouse, you know you are not alone in your feelings. Then to balance concerns, I’ll offer some suggestions and solutions for managing caregiver resentment.
31:57 Pamela D. Wilson: As we talked about in the first segment when hands-on care becomes a daily routine, and a spouse has one or more chronic diseases that take up more time, it can be challenging to maintain a positive outlook. Just like Dr. Song and I talked about—care staff in communities being rushed and missing care—this can help between spouses. One wife told me that she started crying in the middle of making her husband breakfast. Because her sick spouse, her husband said, “What are you crying for? I’m the one that’s sick.” At that moment, any empathy that the wife had for her husband disappeared. She told me she exploded, she said, “I’m crying because I’m sick and tired of caring for you. You don’t appreciate anything. You’re no longer the man I married. I don’t even know what I’m doing here anymore. There are days when I want to walk out the door and never come back.” She said she put his breakfast on a plate and left to take a walk. When she returned, her husband didn’t say a word. She told me that she tries not to talk to her husband about how difficult it is to care for him, or that his behavior toward her is really upsetting. Instead, more than not, she takes a walk, and suffers in silence. Caring for a difficult sick husband or wife can push even the most mild-mannered spousal caregiver over the edge. When caregivers express their opinions honestly to a sick spouse, some of them feel guilty about what they said and the fact that they feel caregiver resentment.
33:19 Pamela D. Wilson: The area of relationship changes is one of the most difficult because the healthy spouse bears all of the responsibility of caring for the sick spouse. In the prior relationship, they may have had balance. They were independent. Now, one person is the caregiver. One person is dependent. Husband’s caring for wives express the same level of caregiver resentment. Men will say, “I have a woman at home, but I don’t know where my wife went.” Men, though, are more willing to hire paid caregiving assistance to care for a wife. Men also, though, have difficulty feeling comfortable in attending male caregiving support programs.
33:55 Pamela D. Wilson: Caregiver resentment is common in spousal caregiving situations. Spouse caregivers can feel trapped in a marriage, with these 24/7 responsibilities to care for a sick spouse. Disappointment and sadness exist in losing a relationship with a spouse who can’t care for him or herself. That sick spouse becomes totally dependent on the healthy spouse for everything. The third area that continues to build on the idea of caregiver resentment is the idea of more restrictions. If you’re a spouse caregiver, you probably know what I mean. Women spousal caregivers are more likely than male spouse caregivers to give up parts of their life.
34:33 Pamela D. Wilson: I worked with a married couple, the husband was the caregiver. His wife had Alzheimer’s disease, and she resisted the idea of having caregivers in the home, although this help was very much needed. The husband caregiver enjoyed going to church on Sundays, and he even considered not going to church because he was worried about not being able to take his wife with him. Although because of Alzheimer’s, she had a lot of behaviors. On the other hand, wife spouse caregivers readily give up outings with friends, going to the gym, their jobs, and other things without thinking of the long-term consequences. More concerns about these restrictions for spousal caregivers include having to be always available, never being able to leave the home, which falls in line with the mention of giving up activities and outings.
35:23 Pamela D. Wilson: Add to this, caregivers who don’t feel capable or trained to care for a sick spouse. Then we have losing that sense of identity and a prior lifestyle. A lot of spousal caregivers say that life has changed almost overnight. Life’s never going to be the same. A significant amount of caregiver resentment happens when the difference between that prior life and a current life looks like night and day.
35:48 Pamela D. Wilson: Let’s look at a couple who is very social. They enjoyed going out several times a week with friends. They had friends over to the house for dinner on the weekends. Today, the outings with friends and inviting friends to the house are over. The husband had a stroke, he’s wheelchair bound, he can’t walk, and his speech and memory are impaired. So he can’t even carry on conversations that make sense anymore. So very sad for the wife, but friends have stopped visiting the home because they don’t know what to do. And the wife spouse caregiver doesn’t go out because she would feel guilty if she left her husband behind and went out with the friends. In these situations where caregivers are tied to the house, many spouse caregivers tell me that their home does become like a prison.
36:37 Pamela D. Wilson: The fourth part of the challenges of being a spousal caregiver is the idea of feeling depressed, isolated, and lonely. When social outings are no more, and friends rarely call, what is there but being with a spouse 24/7, who may not even be able to hold a conversation. If you imagine this day in and day out, that type of situation takes a toll. Even caregivers who are loving and committed can feel caregiver resentment. Some caregivers actually tell me that they would rather die, but they are concerned about leaving behind a sick spouse who needs care. Who will care for the husband or wife? And in some terrible situation, some spousal caregivers do commit suicide because they lose all hope. There are caregiving support programs out there. Caregivers want to seek these out so that they avoid feeling so lost. And speaking about hope after this break, I will share practical tips for spousal caregivers to reduce caregiver resentment and to take more control over your daily life, so that you can find that old self. I can’t promise that making these changes will be easy. You’ll have to have an open mind and be willing to try if you want your spousal caregiving situations to approve, but know that anything is possible.
37:56 Pamela D. Wilson: Here’s one suggestion, you can follow me on social media. On Facebook, I do a video almost every day for caregivers. My page is pameladwilson.page. You can also join Facebook caregiver support group. It’s called “The Caregiving Trap.” This is Pamela D. Wilson, caregiving expert. You’re listening to The Caring Generation, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. Check out my website, www.PamelaDWilson.com, for a lot of helpful information. Stay with me; we’ll be right back after this break.
40:47 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, this is The Caring Generation coming to you live from the BBM Global Network Channel 100 and TuneIn Radio. Share The Caring Generation, one in four people you know, are caregivers looking for hope, help and support that is here on The Caring Generation every Wednesday and in the caregiving podcasts and transcripts on my website at www.PamelaDWilson.com. Let’s talk about solutions for the challenges of being a spousal caregiver and experiencing caregiver resentment. Which is normal when all of these health situations and you’re in the role of being a caregiver for a husband and a wife. The first idea related to clearing out resentment in a spousal caregiver relationship is the idea of empathy. Caregiving is a role where unless one has been a caregiver rather than hearing empathy, you’re likely to be judged by others.
41:37 Pamela D. Wilson: You hear things like, “Caring for your husband or wife, that’s what you got married for. It can’t be that bad.” Then you begin to resent friends or family members who don’t understand your daily life. Your children may want to tell you what to do or how to do it. That lack of empathy does not feel good, and you shut the door. You shut out adult children and others who could potentially be helpful if you could only figure out how to get them to understand. Here’s a question to ask, what are the expectations that you have of others? Do you want them to be empathetic? Do you want them to help? What expectations do you have for your sick husband or wife? What feelings or needs in this situation are not being met that is resulting in caregiver resentment? Sometimes, we really have to think about this to arrive at a true picture of why we are upset. Other times we know exactly why. Whatever the reason or reasons, write them down. You now have a list of expectations that have built up feelings of caregiver resentment.
42:38 Pamela D. Wilson: The second idea is learning to communicate how you feel about this list, and knowing that it’s okay to communicate frustrations related to being a spousal caregiver. Do you remember the story of the woman who was making breakfast and left to take that walk, because her husband snapped at her? She responded, left, and then never came back to that conversation. Learning to communicate by sharing thoughts about being a spousal caregiver in a non-judgmental, non-blaming way can help get rid of caregiver resentment. For example, your adult children have offered to help, but they may not have approached the situation in a way that met your expectations. So how do you back up and start that conversation over? I suggest inviting your children over for dinner and be specific about starting over in a conversation about being a caregiver. Since you’re learning a new skill, I would make a list that you can use so that you remain focused and non-judgmental, and non-blaming.
43:40 Pamela D. Wilson: The goal is to help your adult children gain an understanding of the care situation and find a middle ground for ways that they can help you. The best way to help them understand is to ask for time off every week for yourself. It doesn’t matter if it’s a couple of hours in the evening or on the weekend. During this time, though, you must leave the house and do something for yourself. I know you’re now thinking, you have no idea what you would do. I’ll get to that in a minute. By asking your children and allowing them to help, they will learn what it’s like to be you, to be that spousal caregiver. They’ll have the opportunity to spend time with their mom or dad. You will get out of the house, even if it’s only to go for a walk, go see a movie, to the library, have lunch with a friend. Taking all of these steps will reduce feelings of caregiver resentment. When you can look past a situation that was imperfect—like relationships with your children or your friends—you give up the control that that situation has had over your life. You give up anger towards your sick husband or wife by making time for yourself.
44:49 Pamela D. Wilson: It’s almost like imagine this, giving yourself a gift. Let’s say that you don’t have children or anyone who can help, is there money? Are there funds to pay for a hired caregiver? You’re probably thinking, “No.” But think of this, aren’t you personally worth the cost of a caregiver to give yourself a break-even for an hour or two a week? This goes back to the faulty idea that caregivers, especially women, have to do everything themselves. That it’s not okay for you to ask help. It is okay. There’s also a belief that paying for help is not okay. Yes, it is. If it preserves your mental health and your physical well-being. To get out of that caregiver resentment rut, you must begin to think differently. Let’s take this one step further. You don’t have children, and there’s no money to hire a paid caregiver, what do you do? Find a volunteer. I know, you’re thinking, “Oh, that can’t be done either.”
45:53 Pamela D. Wilson: Caregivers in a spousal caregiving situation tell me all the time that they cannot find volunteers. I know that it can be done. Because I’ve done it. All it takes to find a volunteer to care for a sick husband or wife for a few hours a week is a willing attitude and an open mind, and a sense of investigation. Ask yourself, what is greater, your desire to hold on to those feelings of caregiver resentment, or your desire to get back that small piece of your life? Here are steps to finding a volunteer. If you belong or attend church, meet with the pastor. Let him know about your situation. Ask if he knows of anyone you might approach that might be available for a couple of hours a week. Find one or two people, three or four. Contact senior volunteer organizations. There’s a national organization called RSVP, Retired Senior Volunteers. It’s one of the largest volunteer networks in the country. If you don’t know what to do with your time off, start volunteering. [chuckle]
46:56 Pamela D. Wilson: These are all ways to get your life back. So, find a way to get help consistently, week in and week out, so that you can make time for yourself. If you’re having great difficulty with the idea of what you might do, you can also find a counselor you can talk to about the situation, who can help you move forward. For spousal caregivers who have been stuck in caregiver resentment for some time, it may take weekly counseling sessions to help you forgive yourself, your children, your husband, your wife, the situation, and take back part of your life. Another option is to find a caregiver support group in person or online. I have a Facebook caregiver support group. It’s called The Caregiving Trap. The caregivers in this group are supportive. They are amazing, and they will give you suggestions based on their own experience. After this break, we’ll talk about more solutions for spousal caregivers who are stuck in feelings of caregiver resentment.
47:50 Pamela D. Wilson: I’m Pamela D. Wilson, your host, this is The Caring Generation radio show, coming to you live from the BBM Global Network Channel 100, and TuneIn Radio. Helpful information for caregivers and aging adults is on my website at www.PamelaDWilson.com. Stay with me. We’ll be right back after this break.
51:27 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert. I’m your host. This is The Caring Generation radio program for caregivers and aging adults live on the BBM Global Network Channel 100 and TuneIn Radio. We’re back talking about spousal caregivers who want to move past feelings of caregiver resentment and feeling emotionally drained. Feelings of caregiver resentment kill you, not your sick spouse. One of the main reasons that spouse caregivers feel resentment, as we talked, is the idea of being unprepared for caregiving responsibilities like, hands-on care, medical care tasks, difficulties with family relationships, not knowing how to respond to a husband or a wife with dementia, and not knowing how to manage chronic disease that seems to keep getting worse.
52:15 Pamela D. Wilson: The solution here is easy. It’s the idea of caregiving education. Feelings of being an unexpected spouse caregiver and the related frustrations are perfectly normal. The healthcare system does not educate patients and caregivers. The healthcare system treats health problems. It’s up to you to become an educated spousal caregiver for your husband or wife. Here’s how. If you don’t have any recent copies of visit reports from the doctor for a sick husband or wife, ask for copies of the reports. Warning, this does assume that you are the medical power of attorney. If you are not the medical power of attorney for a sick husband or wife, take a step backward and get those legal documents finished. If you don’t know what a power of attorney is, or why you would want one, I’ll include a link in the radio show for my power of attorney page. You can read more information there. If you are the power of attorney, make sure the doctor’s office has copies of that paperwork, so that they can release medical information to you. You want to ask for a list of diagnosis and a list of medications if you don’t already have or know this information.
53:23 Pamela D. Wilson: Then start your education. Call disease-specific organizations, or complete online research for information about things like high blood pressure, Alzheimer’s disease or dementia, COPD, arthritis, kidney disease, and other health conditions your sick spouse may have. As a spouse caregiver, the more you know about medical conditions, the less you will feel unprepared to deal with care situations. You can listen to these Caring Generation podcasts, these apply to everybody. How to Manage Medications for Elderly Parents. How to Talk to Parents and Spouses with Dementia. Why is Patient Education and Engagement So Important? Why Families Don’t Get Along, and the Ultimate Caregiver Survival Skills that we all need. After you listen to these—listen to the rest of the series. You’ll be able to glean helpful tips from each of these caregiving podcasts.
54:19 Pamela D. Wilson: If you are a reader, the show transcripts are on my website. Go to www.PamelaDWilson.com. Click on the media tab and scroll down to The Caring Generation radio show. You can tell your adult children who are helping you, or your family members about the show so that they can also learn to be more empathetic about the situation, and maybe even offer to help you out. As a spousal caregiver, the only way to reduce and eliminate caregiver resentment is to become proactive. Teach your family and your friends how to be more empathetic of your situation. Ask for help. Find help through counseling sessions and in-person or online support groups. Take some caregiving courses. Hire a caregiver to come into the home. After everything you’ve done and sacrificed, spend a little time and money taking care of yourself and relieving spousal caregiver frustration. I know you can do this.
55:12 Pamela D. Wilson: I thank you all for being proactive and interested in caregiving, aging health, and well-being. Share The Caring Generation with your family, friends, social groups, and workplaces, so that we can make caregiving something we talk about. Tips about caregiving health and well-being are on my website, at www.PamelaDWilson.com, where you can find my caregiving library, my blog, and all of the past Caring Generation radio shows. Thank you for joining me on The Caring Generation. I’m Pamela D. Wilson, caregiving expert, advocate, and speaker. Join me on The Caregiving Generation next Wednesday evening. Invite your family and your friends to join us. God bless you. Everybody sleep well tonight, have a fabulous day tomorrow, and a great week until we are together again.
55:56 Announcer: Tune in each week for The Caring Generation with host Pamela D. Wilson. Come join the conversation and see how Pamela can provide solutions and peace of mind for everyone. Here on Pamela D. Wilson’s The Caring Generation.