How to Cope With a Chronically Ill Spouse – The Caring Generation®
The Caring Generation® – Episode 82 April 21, 2021. On this caregiver program, expert Pamela D Wilson shares tips for how to cope with a chronically ill spouse, manage chronic illness, and openly discuss caregiver concerns. Guest Elisabet Eriksson, a registered nurse, and researcher currently coordinating with the University of Gavle and Uppsala University in Sweden shares research about the relationships of spouses and partners managing chronic illness.
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How to Cope With a Chronically Ill Spouse
0:00:04.0 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is that it doesn’t have to be that way. The Caring Generation, with host Pamela D. Wilson, is here to focus on the conversation of caring. You’re not alone. In fact, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.
0:00:37:36 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, elder care consultant, and guardian of The Caring Generation. The Caring Generation focuses on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, and everything in between. It’s no surprise that needing care or becoming a caregiver changes everything. The Caring Generation is here to guide you along the journey to let you know that you’re not alone.
0:1:05:72 Pamela D Wilson: You’re in exactly the right place to share stories, learn tips and resources to help you and your loved ones plan for what’s ahead. Invite your loved ones, family, and friends to listen to the show each week. This week we are talking about aspects of how to cope with a chronically ill spouse. This is a far-reaching subject. Caring for a sick spouse includes the idea of accepting the diagnosis, grieving parts of life affected by the diagnosis, feeling lonely or isolated, learning how to manage and talk about the diagnosis.
01:48:62 Pamela D Wilson: And supporting the sick to take responsibility for managing the illness—without the healthy spouse feeling like he or she has to be the fixer. Talking about how to pay for care when needed, and making sure that the healthy spouse takes care of him or herself. Joining us to share research about spousal caregiving relationships and managing chronic disease is Elisabet Eriksson who has worked as a registered nurse for 10 years with a focus on cardiology in Sweden and Norway.
02:26:05 Pamela D Wilson: She holds a Ph.D. in International Health from Uppsala University and has a senior lecturer position at the University of Gävle. Her research concerns the work environment and the well-being of immigrant health professionals and the life situations of close relatives in the area of long-term illness that we will be talking about on this program. At present, Elisabet is involved in a joint research project between the University of Gävle and Uppsala University studying communication among the elderly person, their relatives, and staff in nursing homes during the Covid-19 pandemic.
03:09:02 Pamela D Wilson: Before we begin talking about spousal caregiving, I want to take a step back and talk about adult children caring for aging parents and how to translate this experience and knowledge forward to caring for a sick spouse or ourselves as an aging adult.
03:27:99 Pamela D Wilson: The experience and knowledge gained from caring for aging parents—if the caregiver is still young and years away from retirement age—might be forgotten after a parent or both parents pass away. The caregiver goes on with his or her life not relating the idea of caring for an aging parent to caring for a spouse or eventually needing care as an older adult. This lack of transfer of learning happens because the caregiver returns to activities that were put on hold while caring for an aging parent.
04:05:63 Pamela D Wilson: Things like marriage, raising children, going to school, focusing on work and career. And then, one day something happens. The caregiver, a partner, or a spouse are diagnosed with a chronic disease. At the time of the diagnosis, the health concern may seem insignificant. The primary care physician prescribes a medication to put a band-aid on the condition like high blood pressure, diabetes, depression, or COPD. The chronic disease discussion ends when the patient fails or doesn’t know the importance of asking questions. The right questions like can the condition get better? Will the condition get worse? What does this—high blood pressure, diabetes—look like in 5 or 10 years?
05:05:09 Pamela D Wilson: Does this condition cause other conditions? Research confirms that primary care physicians do not have enough time to educate patients about the effects of chronic disease and preventative measures that could potentially save a life. Most patients see primary care physicians, not for routine care but as the result of illness or a time-sensitive problem leaving no time to talk about prevention or discussions about chronic disease management.
05:41:74 Pamela D Wilson: Life goes on. The health of the patient worsens. Other chronic diseases are diagnosed and caring for a chronically ill spouse becomes a full-time responsibility. The importance of learning the significance of chronic diseases and how to manage the effects can have a positive impact on your life if you are proactive to learn about the health diagnosis, medications prescribed, and what can be done to stop the disease from advancing.
06:16:56 Pamela D Wilson: Ask your doctor for recommendations and act on the recommendations. Whether the suggestion is to lose weight, eat less salt, improve your diet, exercise. Whatever it is—strongly consider making lifestyle and habit changes when you are young to minimize the amount and type of care that you may need when you are older. I know, some of you are thinking—it’s is not going to happen to me. I’ll think about it tomorrow.
06:49:90 Pamela D Wilson: It’s not possible to turn the clock back on health conditions. They get worse if we ignore them. Here’s proof by way of a statistic from the US Department of Health and Human Services. Seventy percent of people who live beyond the age of 65—that’s young—will eventually need some type of long-term care services. Within this group, 48% will receive some type of paid support, like being in a nursing or home health care before they die. Healthcare expenses eat up large chunks of retirement income and savings.
07:28:90 Pamela D Wilson: Here is another complicating factor in taking preventative health seriously. If your parents didn’t model caregiving behavior for you for their parents before they died – meaning before your grandparents died or no one in your family is suffering or sick, or you have no other experience with the effects of chronic disease you are less likely to take anything that I’m saying seriously. No one can convince anyone else to take action. You’ll hear this and put the information away on a shelf until something happens. I am a firm believer in health prevention.
08:08:76 Pamela D Wilson: I watched my mother suffer for years from heart disease, cancer, and other conditions before she died. Her brother and sister died of a stroke and a heart attack. I decided early in my early twenties when I was watching this that I was not going to live my life being sick and die young if there was anything that I could do about it. Because of my profession, I’ve also managed the health condition of clients for more than 20 years. I know what can happen and through the education and elder care consulting that I offer, I can help you prevent or manage your caregiving situation and the associated health concerns.
08:53:28 Pamela D Wilson: Let’s begin with how to cope with a chronically ill spouse. We just discussed earlier, the diagnosis of chronic disease and the possibility that taking action can help prevent conditions from getting worse. If you are beyond that point of an early diagnosis, and the health of a sick spouse is affecting your day-to-day lives, the next step is to grieve the changes in your life and talk about plans to adapt to the change. If your husband or wife’s health condition is significant, more time may need to be committed to attending medical care appointments or treatments.
09:33:65 Pamela D Wilson: You may be spending more money on health-related expenses. Dealing with a chronically ill spouse may be consuming hours of each day if you are providing hands-on care, calling insurance companies, attending medical appointments, managing medications, and so on. You may be trading time for tasks by sacrificing your time by giving up social activities, spending less time with friends, and not paying attention to your health.
10:06:86 Pamela D Wilson: It’s easy to see how life quickly becomes out of balance or topsy turvy when pressing priorities like how to cope with a chronically ill spouse consumes your time and your mind. For this reason, talking with your spouse about all of possible issues that may arise is important to having a supportive relationship that goes both ways. The healthy spouse being sensitive to the needs of the chronically ill spouse and the sick spouse realizing that the caregiver needs time for him or herself. Where to begin with how to cope with a chronically ill spouse?
10:48:58 Pamela D Wilson: First learn about the disease. Ask the difficult questions and make a short- and long-term plan. If you don’t know what questions to ask or the bigger picture of what you should be considering, make an appointment with an elder care consultant like myself who can guide you. Depending on the health diagnosis there may be local organizations like the American Heart Association, Arthritis, Cancer, Alzheimer’s, Multiple Sclerosis, and others who have specific disease information and education programs to offer.
11:25:95 Pamela D Wilson: It’s important not to make the sick spouse feel like a problem, or like an imposition but to talk about the situation as a team effort about how each spouse can contribute. Being a caregiver and a care receiver is stressful for both individuals. If you are wondering how to cope with dealing for a chronically ill spouse and are interested in talking with me about your current situation or planning for the future, visit my website www.PamelaDWilson.com, click on the how I help button, then Family Caregiver Support, then Elder Care Consultant. We’re off to a break. Stay with me I’ll be right back.
12:34:45 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation program for caregivers and adults. Whether you are twenty or 100 years old, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. Visit my website PamelaDWilson.com to check out my caregiver library, videos, all of the podcasts and transcripts from this show, online eldercare courses, my book The Caregiving Trap, and how I support caregivers, groups, and corporations.
0:13:06:52 Pamela D Wilson: We’re back to talk about how to cope with a chronically ill spouse. In the first part of this show, we were talking about being diagnosed with a chronic disease and the opportunity to take preventative actions. We talked about how the day to day caring for a chronically ill spouse can be time-consuming. The importance of looking at spousal caregiving as a team effort with as equal participation as possible to reduce possible feelings of guilt or being a burden.
0:13:37:67 Pamela D Wilson: Let’s talk about more about challenges related to how to cope with a chronically ill spouse. In talking with spousal caregivers, many tell me that there can be a level of frustration wanting to make a care situation better. This frustration stems from a husband or wife who doesn’t seem to care or have an interest in changing habits or taking actions that might improve the situation. How to cope with a chronically ill spouse can be learning how to manage frustration about a husband or wife not being proactive about health issues.
0:14:17:03 Pamela D Wilson: An example would be a person who is diabetic eating foods that result in blood sugar highs and lows, not drinking enough water or exercising, and feeling exhausted and unwell all the time. For an insightful discussion about patient education and diabetes, listen to The Caring Generation Podcast Why Is Patient Education & Engagement So Important? In addition to talking about why taking an interest and learning about health issues are important there’s also an interview with Dr. Mayer Davidson, an endocrinologist, on that podcast sharing information about diabetes.
0:14:55:20 Pamela D Wilson: On the other hand, a spouse who may appear not to care or who is engaging in habits that are contradictory to a diagnosis may be depressed, stressed, or afraid. Not assuming that we, in any position, know why a spouse—or anybody else for that matter—is doing what they’re doing is important. Avoiding assumptions goes back to having trusting, honest, and supportive conversations without worrying that anyone is going to get angry or leave the relationship. Begin by looking at the situation from an opposite perspective.
0:15:35:60 Pamela D Wilson: Ask your spouse, “what’s behind the decision to not follow through with the doctor’s recommendations?” You might find out that a chronically ill spouse is stressed out or mentally distracted. Maybe counseling sessions can help. You can also ask “what are the potential costs to our relationship, our daily life, our finances if we don’t follow through with medical or other recommendations?”
0:16:20:78 Pamela D Wilson: Trade-offs exist in all areas of life. Ask: What is each person willing to commit to do? Then agree and create defined next steps. Say “ideally this is what we want to do, how do we turn this into a plan we can both live with?” For example, being supportive without taking responsibility or doing too much for a spouse who can still do things for him or herself can feel like a balancing act, but it is possible.
0:16:37:0027 Pamela D Wilson: All caregivers can become too helpful and then feel like they’re doing everything and that the care receiver expects to be waited upon. How to cope with a chronically ill spouse means not taking on tasks that you don’t have to do — too early in the care situation. Resentment can enter into spousal relationships when how to care for a chronically ill spouse feels one-sided. Medical care and attending appointments can be an important part of being married to a sick spouse.
0:17:08:28 Pamela D Wilson: For spousal caregivers, learning to become an advocate, to ask questions, and discuss the consequences of a health diagnosis can be essential to knowing and creating a plan for how to cope with a chronically ill spouse. Let’s talk more about the effects of how to care for chronically ill spouses. Chronic illnesses can have significant effects on continuing to work, having the energy to do tasks around the house, and socializing with friends.
0:17:39:99 Pamela D Wilson: When a chronically ill spouse feels tired all of the time, the healthy spouse can feel isolated and lonely. Many spouses do. Spouse caregivers may feel that they’ve lost their partner or playmate. Shifts in marital relationships happen between healthy and sick spouses. For the healthy spouse, self-care is extremely important. Assessing caregiver stress to acknowledge the importance of carrying on with social outings and seeing friends is part of ensuring caregiver well-being.
0:18:13:28 Pamela D Wilson: If social interactions were mainly couple interactions, the healthy spouse may have to make more of an effort to schedule husband to husband or wife to wife outings if attending outings by yourself is uncomfortable. Maintaining social connections is so important to well-being. This brings up the subject of how to cope with a chronically ill spouse who cannot be left alone. In all relationships, there is a benefit to seeing friends and people outside of a caregiving relationship.
0:18:48:23 Pamela D Wilson: Hiring a caregiver to stay with a chronically ill spouse while the healthy caregiver goes out to take a break offers dual benefits. The sick spouse can spend time with a caregiver in social activities in the home. The caregiver can also help with household tasks to give the healthy spouse a break. And the caring spouse can take needed time away without worrying that something is going to happen to the sick spouse while he or she is out of the house.
0:19:19:85 Pamela D Wilson: When I managed my in-home care agency, my caregivers provided respite breaks for many spousal caregivers just visiting one or two times a week so that the healthy spouse could grocery shop, run errands, see friends, and socialize. In the big picture, 4, 8, or 12 hours in a single week for a break isn’t much when you consider an entire 7-day week to be 168 hours. Twelve hours is about 7% of an entire week’s time. How to cope with a chronically ill spouse may involve nighttime care, meaning that the caregiver does not always get a full night’s rest.
0:19:59:14 Pamela D Wilson: These small periods of time off for the caregiver is needed to avoid the spousal caregiver from breaking down physically or mentally. In some situations, there are no children or any back-up care for the sick spouse if something happens to the healthy spouse caregiver. How to cope with a chronically ill spouse can also be affected by age gaps. In some marriages, age gaps of 10 or more years exist.
0:20:28:72 Pamela D Wilson: This difference in age may not seem significant when young if both individuals are healthy. However, when a spouse needs care, the age and health difference can place a significant stress on the relationship and throw a wrench in how a couple thought they might live in retirement. How do couples manage when a chronically ill spouse ends work and the healthy spouse continues to work to financially support the family and maintain health insurance? When this happens couples may be financially stretched to pay for medical care, household bills. and continue to raise children.
0:21:09:46 Pamela D Wilson: If a spouse becomes ill at a young age that throws in a lot of additional complications. In those situations, investigate Medicaid benefits and SSI, which is supplemental security income related to being unable to work because of health conditions. That might be an option. Supplemental security income is often confused with social security retirement income. They are two separate programs. How to cope with a chronically ill spouse can mean that the spouse who is unable to work takes on more of the household responsibilities if possible so that the working spouse can continue to work.
0:21:47:72 Pamela D Wilson: In these situations, there may be a little bit of a role reversal for household management tasks. Being able to talk about lost income, paying the bills, and if possible, setting aside money to care for the healthy spouse is also a conversation to have. Talking about money can be difficult when the added expenses for how to cope with a chronically ill spouse consume a large part of the household budget. From a financial perspective worries may exist by the healthy spouse that all of the savings of a couple will be spent on the care of the sick spouse.
0:22:26:01 Pamela D Wilson: In situations of a late-life or a second marriage differences in age and the separate savings or income of each person before the marriage can add complications when one person’s money might be needed to care for the other. I have talked with many caregiving spouses who were remarried and then within a year, a spouse was diagnosed with Alzheimer’s or another very serious health condition. Some of these marriages survived, others ended. The healthy spouse didn’t sign up to be married for a year and be a caregiver for the rest of their lives. Some spouses in committed situations might consider a Medicaid divorce to preserve money and assets for the healthy spouse.
0:23:13:64 Pamela D Wilson: A Medicaid divorce is intended to protect the assets of the healthy spouse often called the community spouse in Medicaid terms. This is not a decision to be taken lightly and there are many considerations including look-back periods and you want to talk to an attorney about this. An attorney specializing in Medicaid planning. Money can be a taboo subject but the reality is that being in poor health is expensive and it can drain bank accounts resulting in ongoing financial worry and stress for married couples.
0:23:47:60 Pamela D Wilson: How to cope with a chronically ill spouse with complex health conditions like Alzheimer’s or dementia, a degenerative disease or health concerns resulting from an unexpected accident can add other considerations especially if these conditions are diagnosed in middle-age or younger. For example, there may be a situation of a young family with children. A husband or wife is involved in a car accident or diagnosed with a degenerative disease like Lou Gehrig’s disease.
0:24:18:76 Pamela D Wilson: The healthy spouse must continue to work to financially support the family. There is no option in this situation to give up a job to become a 24/7 caregiver. The family doesn’t have savings or the financial resources to pay for care at home even with options through the Medicaid program the care provided may not be enough for home care. The family discusses how to cope with a chronically ill spouse and arrives at the decision of placing a husband or wife—mom or dad—in nursing care with Medicaid as the payor source.
0:24:55:91 Pamela D Wilson: These decisions, these situations can be emotionally complex and can be unexpected when we’re young. If possible, having conversations about unusual situations when couples are healthy might remove guilt from decision-making if a life-changing diagnosis or a tragic accident happens. This concept takes us back to the idea of managing the health of a spouse and interacting with medical providers.
0:25:26:62 Pamela D Wilson: Across the board, physicians who have personal experience as caregivers are more compassionate with all caregiving situations and more patient with caregivers and care receivers. The healthcare system is rushed. There is rarely enough time for medical appointments when more than one subject has to be discussed. This time shortage as we discussed earlier makes discussions about managing chronic disease and talking about prevention at a medical appointment near impossible if you want to accomplish a lot of things.
0:25:59:43 Pamela D Wilson: To get the best care for a chronically ill spouse the healthy spouse may have to devote a lot of time to working with the healthcare system—coordinating care between a primary care physician and specialists, scheduling multiple appointments, managing medications, working with health insurance companies. Advocating and coordinating care for a chronically ill spouse can become a full-time job in itself.
0:26:24:64 Pamela D Wilson: Those of you who do this know this. I’m talking to the choir. On this subject, coming up next, an interview with Elisabet Eriksson who has worked as a registered nurse in the area of cardiology for 10 years in Sweden and Norway. She holds a Ph.D. in International Health from Uppsala University and has a senior lecturer position at the University of Gävle. She joins us to share research about the experiences of spousal relationships when one spouse has a chronic disease.
0:26:55:22 Pamela D Wilson: At present, she’s is involved in a joint research project studying communication among the elderly, their relatives, and staff in nursing homes during the Covid pandemic. Join me every Wednesday for The Caring Generation where we can tackle practical, important, uncomfortable, and sometimes intimidating discussions about aging, caregiving and talk about everything in between. The show is not limited by time zone or location—caregivers worldwide listen. Stay with me; I’ll be right back.
0:27:52:78 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, and elder care consultant on The Caring Generation. If you are looking for hope, help, or support for an aging or caregiving challenge, I can help. Visit my website PamelaDWilson.com, click on the How I Help tab, next the drop-down for Family Caregiving Support, and next the tab for Elder Care Consultant. You can meet with me where you can learn more about how I support family caregiving situations.
0:28:17:62 Pamela D Wilson: Share and visit my website PamelaDWilson.com with others you know. One in four people are caregivers looking for hope, help, and support and they don’t know where to turn or who to trust. You’re about to meet Elisabet Eriksson with Uppsala University and Galve
0:28:24:00 Pamela D. Wilson: Elisabet thank you so much for joining me today.
0:28:36:51 Elisabet Eriksson: Thank you. Thanks for having me.
0:28:40:01 Pamela D. Wilson: I found you through your research study and your study emphasized living with a spouse with a chronic illness and it mentioned several areas of concern. Please share those challenges related to a change in social life.
0:28:53:25 Elisabet Eriksson: Well yes, there are many challenges for partners. The partners in our studies said that it was the health of the spouse that determined a lot of their social life. Some partners were so tired that they did not have the energy to socialize with others. Some even thought they were not invited to friends in the same way as they were before because of their spouse’s illness. So I think these situations create feelings of isolation and loneliness for partners.
0:29:31:63 Pamela D Wilson: Many spousal caregivers, even in my groups, find themselves having to take over things that they didn’t do before. So life management, home care responsibilities, can you talk about this and then the idea of positive reappraisal.
0:29:47:81 Elisabet Eriksson: Yes, it’s true. Partners of spouses with chronic illnesses take over many everyday activities when their spouses’ ability to do these tasks declines. For example, driving, go shopping, cleaning, paying bills and for some partners, it can be a positive challenge to learn something new. For example, like cooking can be fun to learn. But it can also be demanding to have to take over practical work if you don’t want to and you don’t know how to do that. Another challenge that many partners experience is to balance between helping the spouse and letting the spouse do the things that he or she can still do.
0:30:34:99 Elisabet Eriksson: And it was important for partners in our study that the spouse should be as independent for as long time as possible. So their reappraisal is I think that being able to manage the home and to continue to live together as a couple is perceived as meaningful for the partners. And they maintain a sense of purpose in their daily activities and to maintain control. So the ability of a partner to cope also offers the hope, the hope to continue managing daily life as long as possible. So just to live as normal as possible has a value in itself.
0:31:20:58 Pamela D Wilson Caregivers because of all of these responsibilities they have so much to do and they feel pressed for time. How does that affect the ability of the caregivers to actually care for themselves?
0:31:33:14 Elisabet Eriksson: Well, I think caregivers experience a lot of stress and have limited time for themselves. Unfortunately, I think that many caregivers feel torn between their own needs and the needs of a spouse. Meaning that for some caregivers feel that they have to choose between their own needs and health and the spouses’ needs so they have limited time for their own basic needs and leisure activities whichever these are. Like taking walks, playing golf, go to the gym, go shopping, go swimming, meeting with friends or whatever. And if you take the health, like exercise and not being able to exercise will of course, influence the health of a partner as well. So even though partners have limited time for themselves, it is very important that they get some time to do just what they want to do.
0:32:36:90 Pamela D Wilson: Was there anything in the study about—I would call it discomfort of a spouse, say the healthy spouse—talking to the spouse who needs care about the fact they do need time alone and they do need a little bit of rest. Or do spouses just guilty that they don’t feel—they would feel bad bringing that up to a husband or wife. Was there any discussion about that?
0:33:00:09 Elisabet Eriksson: Yes there were and I don’t think they felt so bad about it. I think it was kind of obvious that they tried to go out. They tried to find some interest that they could continue to do. Perhaps one friend that they could call or so. And to bring it up—make it easier for the couple, I think that they respect each other’s time and if you have a good relationship, I think that works out. But then of course there were some partners that had had like, there was very limited time to do this.
0:33:47:43 Pamela D Wilson: What did the study show about caregivers who also had a chronic illness, and they’re trying to care for a spouse who also has a chronic illness?
0:33:57:21 Elisabet Eriksson: Yes, I think these partners who are sick themselves need much more attention. In our study, some partners could feel neglected. Even forgotten by others. Both from the healthcare system and from friends meaning that their needs and the health of a spouse received the lowest attention in talks with others. And here, I think the healthcare providers—doctors, nurses, physical therapists, other professionals—have to give the partner’s life situations some more thought so their needs are being met as well. They have to ask them how they are doing or how they are coping if they come together to a checkup at the clinic for example.
0:34:45:00 So in these situations where the caregivers feel neglected by the healthcare system and their friends. Can the caregivers do anything about that? What can be done?
0:34:54:49 Elisabet Eriksson: Yes, they had expectations to receive support from the healthcare system but the partners were not satisfied with the information of the care provided from both the hospital staff, the primary care professionals. So the partners lacked acknowledgment for the caregiving role by professional care workers—and they do an enormous job. And sometimes they just want someone to say that. Like “great work you’re doing.” So the health professionals need to acknowledge the partners much more I think and they also need to inform them about the available supports that do exist.
0:35:40:65 Elisabet Eriksson And that themselves and the spouse can receive from the healthcare system. And there is support groups for partners. For example, for those with Parkinson’s Disease and other diseases. And these support groups can be very appreciative. For example, partners can get time for themselves to go shopping. They can leave the spouse there for a while. And we do have self-help groups and patients’ associations where people can share their experiences. Give advice, support each other. And these groups, I think, could be much more use than they are being used today.
0:36:25:92 Pamela D Wilson: For those groups, let’s say I’m an introvert and I don’t like to talk to people. Or I’m afraid of sharing my feelings. Is there an easy way for a partner like that to feel a little more comfortable to get into a group? Do any of these groups have a leader or something that kind of helps people feel more comfortable about joining?
0:36:46:52 Elisabet Eriksson: Well I think there is a step to join as you say. You need to take some kind of first step to join and then perhaps you may feel more at ease to talk when you see and meet other people in your own situation. And I think here it’s the importance of the healthcare system that they could perhaps push partners a little bit more about joining one of these groups so at least inform them that these groups are available. But then again, the healthcare workers, they need to acknowledge the situation of the partner.
0:37:38:28 Pamela D Wilson: For friends, let’s say that I’m one of these spouses and my friends have kind of just dropped off the face of the earth (chuckle) and they’re not inviting me anymore. Is there something that I as a spouse could say to these friends in a nice way so that I would be invited more or to kind of keep those relationships going like they were before I became this spousal caregiver?
0:38:02:35 Elisabet Eriksson: Well I guess there are, but in our study, I don’t think there were that many who had good examples of that. They may more felt neglected and were I think a bit afraid to tell their friends about how they felt. And that’s very sad, of course.
0:38:23:47 Pamela D Wilson: Well it is and I can share in my caregiving groups, a lot of caregivers feel judged. So friends who may not be a caregiver—if the caregiver says, “I’m exhausted” they may not even be empathetic so maybe that’s the challenge that we’re seeing here. Can you talk about how the quality of a marriage—either a marriage that is really close and really loving or isn’t so good—can affect this spousal caregiving relationship.
0:38:49:49 Elisabet Eriksson: Yes, we saw in our study that those having a good relationship, they continued to care for a spouse and felt good about it. So being in a long-term relationship was described as a resource and motivated the partners to continue to care for their spouse. And other researchers have seen similar things. And those in a close relationship seem to find it natural to care for a spouse and they are motivated by the love and affection for a spouse. And those in perhaps not so close, marriages they may also find it natural to care for their spouse. But they may be motivated more by notions of feeling it’s a duty or an obligation to do it more than the natural love and care.
0:39:53:54 Pamela D Wilson: And one more question for you, did any of these spouses—whether it was a close relationship or not—were they open to the idea of having a caregiver come, as you mentioned, for respite so that they could get a break or was that something they tended not to do because they felt that, you know, they had to be that caregiver?
0:40:19:99 Pamela D Wilson: Elisabet Eriksson: Well, I did think that they tried to see that they needed a break and they knew that they needed these breaks. But they just found it difficult to take them. To take that responsibility for themselves in a way.
0:40:32:26 Pamela D Wilson: Elisabet – I thank you so much for your time and all of the research and the work that you do for—it’s so needed for all of these spousal caregivers.
0:40:39:91 Pamela D Wilson: Elisabet Eriksson: Thank you. Thank you for having me.
0:40:43:10 Pamela D Wilson: It’s time for a break. Up next putting the finishing touches on how to deal with a chronically ill spouse. Check out all of The Caring Generation podcasts and the show transcripts on my website at PamelaDWilson.com and all of your favorite podcast apps: Apple, Google, Spreaker, Podcast Addict, Pandora, Amazon Music, Stitcher, Spotify, I Heart Radio, Podchaser, Jio Saavn, Vurbl, and more.
0:41:11:78 Pamela D Wilson: Add the podcast app for the Caring Generation show on the cellphone of elderly parents, in-laws, family members, and friends. Helpful information about caregiving and aging is on my website and in my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, available on my website at PamelaDWilson.com. I’m Pamela D Wilson on The Caring Generation Stay with me. I’ll be right back.
0:42:02:61 Pamela D Wilson: This is Pamela D Wilson. You’re with me on The Caring Generation. If you in a caregiving situation where you are not sure what to do and you want to plan for care needs for aging parents, a spouse, or yourself and avoid unexpected ups and downs—help is on my website in my online articles, online caregiver courses, podcasts, videos, elder care and aging consultations, and the support that I offer to groups and corporations interested in supporting caregiving conversations.
0:42:32:18 Pamela D Wilson: Let’s continue our conversation about how to cope with a chronically ill spouse from the perspective of support for the chronically ill spouse. In addition to the disease-specific groups that I mentioned earlier as a source of education and possible support groups, encouraging a spouse to remain as active as possible can pose benefits to physical and mental health.
0:42:57:08 Pamela D Wilson: While a chronically ill spouse may be viewed as the “stay-at-home spouse” there can be many benefits from this situation that you might not think about. A chronically ill spouse may be a support for children before and after school and with school activities. Having a chronic illness that prevents an individual from working or that affects health does not mean that a chronically ill spouse stops living. How to cope with a chronically ill spouse may mean that this spouse agrees to learn new things.
0:43:28:95 Pamela D Wilson: In our conversation with Elisabet Eriksson a chronically ill spouse may accept the responsibility of meal preparation and learn how to cook in return for the healthy spouse taking over financial management responsibilities and working. Retired couples managing through chronic illness can find many ways to adjust to changes in day-to-day tasks.
0:43:49:86 Pamela D Wilson: When couples are retired or married and one spouse works, if adult children are available and willing, a son or daughter may serve as another source of support for the healthy spouse. While parents still able to take care of each other may not want to burden adult children by asking for help, a son or a daughter who can commit a few hours a week to help with routine tasks can be a Godsend. Sons may be able to help with home-maintenance-type projects that a husband was previously able to do.
0:44:22:63 Pamela D Wilson: A daughter may serve as a social companion for a mother by way of a lunch date or as a driver for shopping and errands. Visits by grandchildren might be an enjoyable distraction for the chronically ill spouse. When a chronically ill spouse becomes homebound, visits by family can be uplifting. Even video calls can be uplifting. As we discussed earlier using a paid caregiver can also serve as a social companion and a support really for both spouses.
0:44:51:14 Pamela D Wilson: Loneliness and social isolation are factors of increased aging. How to cope with a chronically ill spouse has an associated time commitment. This means that more spouses spend more time together and less time with others. Research confirms that friendships and participating in social and community activities is beneficial for health and well-being.
0:45:14:91 Pamela D Wilson: How can couples whose life revolves around managing health reach out or reach inward to find ways to stay socially connected and have meaning in life? Many caregivers say that one day is just like the next, and the next and the next. Some feel that they don’t have anything to look forward to and might even feel resentful when you hear about the adventures of friends and couples who are not involved in care situations and all of the life adventures they’re experiencing.
0:39:30:00 Pamela D Wilson: If we are the caregiver or the care receiver who was previously active, social, and always on the go the shift to being a caregiver or needing care can feel like a night and day difference. Married couples can mourn the loss of vacations, or spending weekends together at the home of friends, and a long list of other enjoyable activities that might no longer be possible together as a couple. How can we adjust to major life changes while managing the emotional distress that we might be feeling?
0:46:24:97 Pamela D Wilson: Major life changes may feel threatening because our life as we knew it may no longer exist. Being a caregiver and needing care can involve multiple stressors like changes at work, more time devoted to health activities and routines, and less time for the things that we love. Spouses in these situations can feel forgotten by friends who are out there still enjoying their active lives.
0:46:51:86 Pamela D Wilson: Let’s be honest, losing touch with good friends because the things we previously had in common have changed can be very disappointing and sad. I am a proponent of positive thinking. In what ways can we look at the isolation and loneliness of how to cope with a chronically ill spouse or our own health issues in a positive manner? The reality is: life has changed. The healthy spouse may still be able to go out and be social but it’s not quite the same without the other spouse.
0:47:27:47 Pamela D Wilson: The chronically ill spouse may be homebound but still as mentally engaged as always. Why not? What can we do to support meaning and purpose in both spouses lives? Participating in activities we find enjoyable and being with people we like are two positives. How do we do this when – worst-case scenario all of our friends have disappeared, we don’t have any children and we are bored all of the time?
0:47:56:36 Pamela D Wilson: And honestly, feeling a little hopeless. Maybe we’re not interested in doing anything. From a health perspective, we look at the possibility of depression and if that is affecting how we feel coping with a chronically ill spouse. We can find ways, counseling, or medication to manage the depression. Next, action is a way to move forward. We take action and we do a joint activity. As a couple write down your interests. What do you like to do? Is it things like listen to music, garden, do crafts, watch sports?
0:48:33:75 Pamela D Wilson: And then write down things that you are naturally good at. These might be things that you did in your career when you were working. For example, if one of you was an accountant or a CPA you are probably good at math, accounting, and financial matters. Maybe one of you has really good computer, administrative or organizational skills. Maybe you were a school teacher or a salesperson with the gift of gab—you can talk to anybody. How can you build upon things that you are interested in or things that you’re good at doing to benefit yourselves and others?
0:49:09:03 Pamela D Wilson: When we experience a significant life change, there is an opportunity to help ourselves by becoming externally focused on a project or a person to allow our internal selves and the grief that we’re feeling to reconcile. And it’s a way to feel good about something that we’re doing. During my life, I have volunteered to work individually and in groups, I’ve served on boards of non-profit organizations.
00:49:38:42 Pamela D Wilson: Many of you may have a similar experience. I can’t speak for you, but these experiences changed my life. They allowed me to meet new people I would have never met. I was able to connect socially, and I felt good that I was doing something that was good for other people You might be thinking, I’m a caregiver for a sick spouse—Pamela I don’t need more things to do. Or my husband is homebound, what can he possibly do or what can my wife possibly do?
0:50:08:11 Pamela D Wilson: Those are two great observations and questions. The answer is, you can get as creative as you want to be in solving feelings of loss, isolation, depression, and loneliness that many caring families and spousal relationships experience. Or you can choose to stay in the negative and be depressed. It’s a choice. Why not bring a little light into your life? If you love music what about learning how to play a musical instrument? Find a used guitar or a piano or whatever instrument it is and learn how to play.
0:40:48:00 Pamela D Wilson: If you were a CPA or an accountant and you still enjoy working with numbers and math – what about approaching a local grade school and offer to tutor children who are struggling with math or accounting or reading or some other subject that you’re good at? If your chronically ill husband or wife is a conversationalist—chatty, likes to talk— what about finding an organization that is looking for friendly visitors for people by telephone or by video calls?
0:51:21:33 Pamela D Wilson: Here’s a novel one. What about getting to know your neighbors and doing or sharing? Let me add some context to this though– I am assuming that you live in a safe neighborhood or an apartment or a complex where getting to know your neighbors would be a positive thing, rather than a safety risk or something seen as an imposition or inappropriate. An example of this might be starting a book club, or playing cards with some of your neighbors, or a walking group, or any type of group activity that allows socialization without leaving the neighborhood. Something that really doesn’t have a cost to it.
0:51:59:87 Pamela D Wilson: Maybe a monthly rotating pot luck dinner or an outdoor barbecue. Sometimes the problem in these situations, when we’re feeling a little down, is that we think that there is only one way to do something because this is how we “do that thing.” How many of us have heard, “well we don’t do that here,” or “we don’t do it that way, or been there done that, I don’t think this is going to work.” These are all sayings by naysayers who are focusing on the negatives and not looking at the possibilities.
0:52:33:30 Pamela D Wilson: We choose how we think every day. There are good people everywhere who are looking for friends and would love to get to know you. Sometimes they’re right next door or across the street or down the hall and we haven’t made the effort to connect. It’s true, some of these people may not have the time to make new friends or have an interest in making friends or group activities. That’s OK. For all of those people who are not interested, I guarantee you, there are others who will say yes.
0:53:08:41 Pamela D Wilson: And on the topic of yes. If somebody invites you to do something—rather than immediately saying no, I can’t. How about saying yes? How to cope with a chronically ill spouse or being that chronically ill spouse involves so many aspects plus focusing on the good in your relationship, adapting to change, taking responsibility for daily and ongoing tasks, and seeking personal fulfillment through activities that you do together, separately, and through social relationships.
0:45:30:00 Pamela D Wilson: Thank you for joining me on this week’s episode of The Caring Generation. Invite your family and friends to listen each week. I am Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again next week. God bless you all. Sleep well tonight. Have a fabulous day tomorrow and a great week until we are here together again.
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