In 2011, Bonnie and Todd Kassel learned their 12-year-old daughter Taylor was diagnosed with lupus nephritis. Their angst transformed into lupus awareness, advocacy and action. Read more.
Q&A with Sharon Mack - Understanding & Managing the Stress of Caregiving
"Ask the Experts" is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus.
Lupus is an unpredictable disease that greatly impacts not only the person diagnosed with the disease, but those who provide care. Relationships and roles can be challenged when a loved one is diagnosed with lupus. This month, Sharon Mack, Health Educator for the Lupus Foundation of America, provides helpful tips and advice about caring for a loved one with lupus while caring for yourself.
1. My partner was diagnosed with lupus a few years ago and we both struggle with the disease. I am too afraid to tell her that I am struggling for fear that this will cause her more stress. How do I manage? New Orleans, LA
Acknowledging that you are struggling and reaching out is the first step in trying to cope more effectively with all the difficulties that lupus can cause. It can be helpful to define your struggle, for example, what in particular is the most problematic and the “biggest energy drain” for you and your partner. Clarification of your struggle can help determine reasonable goals and priorities to “normalize” living with lupus as much as possible. To improve a situation, it helps to recognize the “cause and effect” of your struggle so you can make the best choices to change the situation.
Wanting to protect your partner from more stress is understandable. However, good communication between the caregiver and the person who has lupus is very important. Lack of communication can easily interfere with an individual’s ability to be an effective caregiver. The person with lupus and the caregiver will have their own thoughts, feelings, and concerns about living with lupus and they both need to be heard. Open and honest communication can lessen fears, lead to more meaningful interactions and better support for each other (a better understanding of each other’s struggle), and finding solutions that will benefit both the caregiver and the person with lupus. It can be helpful to evaluate, every now and then, where you and your partner are with this illness and whether or not your methods of coping are making things better, or if you need to make some changes.
2. I am so tired and can’t care for my loved one alone anymore. I don’t know where to turn. What are my options? Cedar Rapids, IA
Caregiver fatigue is common, both physically and emotionally. Having a support system is critical because if caregivers don’t take care of themselves, they may be the ones who need a caregiver. If you can’t care for your loved one alone anymore, then it is time to ask for help. Caregivers should not feel reluctant to reach out. Respite care (temporary help to assume caregiving duties) can allow caregivers the time to take care of themselves and re-energize.
Making a list of the things that you and your loved one need help with can be helpful in determining what type of respite care would be most accommodating. Family and friends can lend a helping hand and provide temporary relief. There are home health care agencies that provide a range of services, from personal care providers to more skilled health care providers. Church ministries and other community organizations may be able to provide support as well. Social services may be able to provide guidance and direction to respite care. Talking to other caregivers or contacting professional caregiving organizations can also provide helpful insights to getting temporary relief. Caregivers should keep in mind that it is important to communicate with their loved one’s doctor if they think that their loved one needs skilled nursing care outside of the home.
3. I am 28 years old and I am struggling badly to take care of myself. I feel all alone and have tried to find support groups but none are near and it's hard for me to get much done with the lack of energy and constant fatigue. I have lost my job and feel helpless. I am trying my best to do it all, but I am so weak and fatigued. What support options are available? Grayson, GA
First, it may be helpful to make a list of what you can do for yourself and what you need help with. This will help you determine what type of help would be most beneficial to you. For example, do you need help with meals and housekeeping, or transportation to doctor’s appointments? Do you need help every day or just certain days? If you are not able to reach out to family and friends for help, then you can contact a local home health care agency for information about personal assistance and/or more skilled care. Local church ministries and other community organizations (such as meals on wheels) may be helpful.
It is not easy to adjust to losing a job. If you wish, you can reach out to a vocational rehabilitation counselor. Based on your skills and any limitations because of lupus, a counselor might be able to suggest some productive projects that can be done at home (now or when you feel better), but still put you in touch with other people, which can decrease a sense of isolation. Also, I encourage you to check out the resources listed at the end of these 15 questions. One last thought, it is a good idea to thoroughly discuss with your doctor your ongoing and constant fatigue, along with any other symptoms (physical and emotional).
4. I have lupus, but I think my children are greatly impacted by it. They are all teenagers now, but I worry about them. How can I get them the support they need? Knoxville, TN
When a parent has lupus it is understandable that children may be quite sensitive to the situation. Chronic illness, such as lupus, affects the family in many different ways and there will inevitably be difficulties and unspoken concerns. First, I think it is important to understand how your illness has affected your teenage children. For example, one of the biggest fears that children may have is fear of the unknown. What will happen to my parent who has lupus? The best way to know what kind of support your children need is to ask them. Encourage healthy communication with your children about how lupus is affecting you and that you are concerned about how your illness is affecting them. If it is obvious that any of your children are struggling with the impact of lupus, it can be helpful to ask what is the most worrisome. Teens can also talk to a school counselor or friends about their feelings and concerns. Most of the time, talking can provide a sense of relief for everyone. You can guide them to reliable information about lupus including understanding lupus, symptoms, and living well with lupus. Also, I think that how a parent learns to live with lupus can have a great deal of influence on how the illness directly affects a child. Open and honest communication can help to make sure that family life is as normal as possible, which can counter fear and concerns.
5. Are there caregiver support groups? And how do I find them? Charlotte, NC
I see that you are located in North Carolina where one of our chapters is located. You may want to contact your local North Carolina chapter to see if they currently sponsor support groups for caregivers. Another resource is Today’s CAREGIVER at 800-829-2734 (or Caregiver.com).
6. One of the biggest stresses for me as a caregiver is the indifference to and misunderstanding of, what life with lupus is really like for my daughter-the daily challenges, the pain, the limitation, the exhausting appointment schedule. Along with lupus, we live with RA, Raynaud’s, Addison’s, hypertension, severe cerebral vasculitis, migraine and anemia. How many times have we answered the questions, are you exercising? Are you in school? What do you do? And heard you don't look sick...or my (fill in the blank) has lupus…they're fine...or my (fill in the blank) had lupus...they're gone. How do I help others understand what a life with lupus is like? Camarillo, CA
Once caregivers identify a specific stressor (such as indifference and misunderstanding) then they can respond in the best way possible to keep stress from taking a toll on them. Now and then, we may have to accept that not everyone can understand (or is willing to understand) lupus and the impact of lupus. If a person doesn’t understand what the disease is all about, and has never cared for someone with lupus, they have no frame of reference for understanding what you and your daughter are going through.
The best approach is usually to respond simply and to the point, making it clear what lupus is, and is not, and that it can range from mild to life-threatening. For example, if someone says that a person with lupus doesn’t look sick, a simple response might be that lupus patients have good days and bad days. Friends may not see a lupus patient when they are having a flare, but only when they are in remission and symptoms have improved. It is generally not necessary to share all of the details about the disease. Caregivers can also refer people to the LFA website or give them a brochure about lupus and how it can affect the body. If it feels right, caregivers can ask friends to lend a helping hand with caregiver responsibilities, which provides the opportunity to see first-hand how the disease can affect an individual. Caregivers, who do not find the support they need from their circle of friends, should consider finding other forms of support.
7. I have a chronic disease and I care for a loved one with lupus. I am finding it hard to manage the care for both of us. Is there a place that can provide support for us when we are unable to do our day-to-day tasks? Oklahoma City, OK
Caregivers should always be aware of their limits and know when to reach out for help. To determine the best source of help, it is important to make a list of the things that you and your loved one need the most. Be specific, such as meal preparation or shopping, personal care, skilled care, or transportation to doctor visits, etc. This will help you determine what resources are most needed.
Oftentimes, family and friends are able to lend a helping hand and provide temporary relief. If not, caregivers may need to find respite care (temporary help to assume caregiving duties) through a local home health care agency. Most can provide services ranging from personal care (bathing, dressing, or preparing meals) to more skilled care. Local church ministries and other community organizations (such as meals on wheels) can also be helpful. In Oklahoma, people can contact the Oklahoma Department of Human Services for information (405-521-3646), or the Lifespan Respite Grant Voucher Program (405-521-4358), if hiring a care provider presents a financial strain. Talking to other caregivers or contacting professional caregiving organizations can also provide helpful information. Keep in mind that it is important to communicate with one’s doctor when skilled nursing care is necessary.
8. My mother has had lupus since I was born and now I am having trouble dealing with it. When I have to keep on repeating it over and over again to friends and family and it gets very frustrating. How can I deal with this without venting to my mom? I feel like I am stressing her out even more, considering all that she has been through? Chicago, IL
It can be stressful when you, or your mother, have to explain lupus over and over again to maintain friendships and family relationships. As I said earlier (response to question # 6), the best approach is usually to respond simply and to the point, making it clear what lupus is, and is not. For example, people who don’t understand lupus generally have a difficult time understanding that one day a lupus patient can feel good, and the next day develop a flare. The ups and downs of lupus can take a toll. It may be helpful to compare the joint pain, muscle weakness, and fatigue to having the flu, only it lasts longer. Some people will make an effort to understand, others may never understand.
You can initiate a healthy conversation with your mother. Talking is a healthy way to deal with stress and together you can determine the best way to talk about lupus with others. Sometimes a simple, “thank you for asking, but you may want to visit the LFA website for a deeper understanding of the disease” may be a less stressful approach. Let them know that lupus can range from mild to life-threatening and that it is certainly unpredictable; offer a brochure about understanding lupus or coping with lupus. On the other hand, it may be emotionally beneficial for your mother to talk to a close friend about her lupus. Caregivers cannot be all things at all times to their loved one. It is healthy, and oftentimes necessary, for people with lupus and caregivers to find a balance between their needs and relationships with close friends and family members. The key is to know your limits. You and your mother can talk about the best way to manage your energy to take care of yourselves.
9. My step-daughter has recently been through a series of tests. We do not have an official diagnosis. She really hasn’t taken care of herself or allowed herself to recuperate other than missing school, but still making a point to participate in extracurricular activities. Now she is so far behind in school, which is putting more stress on. In her mind she is already preparing for her condition and we are trying to help her focus on getting well, cutting out all the extras and just making it through school and remaining positive until we cross that bridge. Please advise us on anything that you think might be helpful. Philadelphia, PA
You can help your step-daughter have a clearer understanding about what lupus is and is not, and the importance of following the doctor’s instructions and staying as healthy as possible. Adjusting to a diagnosis of chronic illness takes time, and if lupus is confirmed, help and resources are available to help ease the difficulties and discomforts of lupus. Keeping your step-daughter’s health care team informed about how she is coping with her health issues is important to ensure the best approach to meeting her needs. Emotional support is important and maintaining a sense of normalcy with close friends and peers can go a long way (such as providing the opportunity to talk to friends and studying together, things that do not put your step-daughter’s health at further risk). If you haven’t already done so, you can talk to the school nurse and teachers to map out a plan to keep up with school work. You can find extended information on the Lupus Foundation of America website about teens with lupus, which may also be helpful, click here.
10. I am familiar with lupus symptoms and seem to see many of them in my wife. She doesn't want to hear me talk lupus. She has had checkups and they have not diagnosed anything. My question is: what can I do to help her if in fact she has lupus and is not seeking any help? Indiana
There are many challenges to reaching a lupus diagnosis. Lupus is known as "the great imitator" because its symptoms mimic those of many other illnesses. Symptoms can be unclear, can come and go, and change. In some cases, it can take a long time for the physician to confirm a diagnosis of lupus, or rule it out. It is best to thoroughly discuss with the doctor what your wife can do to manage her current symptoms and ask about the next steps in her health care to determine what may be causing her health issues. The doctor also needs to know when there is a change or worsening of symptoms. For a better understanding about lupus and living well with lupus you can go to the Lupus Foundation of America website, click here.
11. My daughter has had lupus since she was 12 and she is now 18. She was recently accepted to college, which we are thrilled about. I want to give her independence in the management of her medical care, but I am having difficulty “letting go.” How can I stop worrying and trust that she can manage her health on her own? Carlsbad, CA
It is natural for a parent to worry and not want to let go when their teen goes off to college, but especially when their teen has a chronic illness, such as lupus. Keep the lines of communication open. Healthy communication with your teen about concerns and feelings, yours and hers, may lessen your worries. Staying involved in her life can help you become aware of any serious health issues and it provides the opportunity to reach out and offer support. It can also help you understand how she is adjusting to college life. If your daughter has done well with managing her lupus since her diagnosis, chances are she will continue to do so. The fact that you want your daughter to independently manage living with her disease is a very important step in the process of letting go. Also, it may be helpful to talk to other parents who are going through the “process of letting go”. You can learn more about how other young adults with lupus are learning to manage lupus ontheir own.
12. I am a full-time employed single parent caring for a young child with lupus. I have no medical training and I am utterly lost in how to manage this disease. We see several specialists, but I feel unqualified to make the decisions that they are asking me to make in terms of my child’s care. Is there a service that provides help to single parents on making healthcare decisions? Harleysville, PA
You are not alone and if you need help making decisions about managing your child’s health care, then it is best to thoroughly discuss them with your child’s health care team. Let the team know specifically what you are uncomfortable with and what further information you need to help you make an informed decision. This type of interaction can also help build a better relationship with your child’s health care team and make things easier in the future. For example, if you need to make a decision about treatment options, ask about the risks and benefits of each option and know when to contact the doctor for side effects or a change in symptoms.
If you think it would be helpful to talk with a nurse practitioner, or even a social worker or a counselor (who is familiar with chronic illness) about managing your child’s lupus, don’t hesitate to ask the doctor for a referral. It is important to speak up about things that you don’t understand or that don’t make sense to you. The LFA website offers a lot of information about lupus in children and information about caring for a child with lupus. There is also information about communicating with the doctor. You can also call the LFA, Information Request Line to speak to a health educator.
13. My girlfriend/fiancée has lupus and I want to be there for her, but she keeps shutting me out. How do I let her know that I am here to help? Corsicana, TX
Lupus can take a toll on even the healthiest relationships and there is not always an easy solution to living with a chronic illness, either for the person with lupus or the caregiver. Open and honest communication is usually the best approach to problem solving. It can help decrease feelings of distance in a relationship and increase understanding about how lupus is affecting a loved one (physically and emotionally.) It provides the opportunity for caregivers to learn more about why the person with lupus may be withdrawing from family and friends.
Caregivers may have to ask their loved ones to be clear about what kind of support they need and when they need it. There may be times when the only thing caregivers can do is to let their loved ones know that they are there for them to help make life remain as normal as possible. Also, if a caregiver is feeling “shut out” it can be helpful to tap into available resources, such as a trusted friend, because caregivers also need emotional support. If a relationship is in serious trouble because of the difficulties of living with a chronic illness, persons should not hesitate to consider counseling with a professional who is familiar with issues surrounding chronic illnesses, such as lupus.
14. My partner has lupus, but is afraid to share her diagnosis of lupus with our friends and family. I know they would be more than willing to help us out. How do I get her to be willing to reach out to them when we need their support? Sudbury, MA
It is not unusual to be uncomfortable about sharing a diagnosis of lupus. Some people with a diagnosis of chronic illness might not want to make their illness a matter of general knowledge among friends. There are pros and cons when it comes to revealing a diagnosis of lupus. For example, someone who is newly diagnosed may need time to adjust to a life changed by chronic illness before sharing information. A person with lupus may be afraid of what friends and family members might think or how they may react, especially if there are misconceptions about lupus.
On the other hand, not sharing a diagnosis of lupus may put some distance between friends and family and the person who has lupus. Close friends and family members may sense that something is wrong anyway, depending on how lupus is affecting a loved one. Sharing may help unload the emotional burden and it may also help integrate lupus into the person’s life. Revealing a diagnosis of lupus can open the door to understanding and support and, in some cases, strengthen friendships.
Whatever the case may be, the person with lupus has the right to privacy and to decide who to tell and when, and how to reveal the diagnosis with friends and family. However, caregivers also need support and talking about how caregiving is affecting them is often necessary to calm the emotional reactions that come with caregiving. Healthy communication between you and your partner is important. You might want to discuss why your partner is afraid to share her diagnosis with friends and family and why being able to ask for help is important to you. As necessary, you and your partner can consider getting help through a local home health care agency if your partner prefers not to use friends or family members.
15. My wife has had lupus for about 10 years and it is a struggle to stay well during the cold months. I feel like I am always getting sick. How do I protect my spouse and myself? Kenosha, WI
Good question. By protecting yourself you may also be protecting your spouse because people with lupus are at increased risk for all kinds of infections. The way lupus affects the immune system can sometimes limit the body’s ability to fight off foreign invaders, such as bacteria and viruses. Also, people with lupus often take immunosuppressive medicines and these drugs limit the ability of the body’s immune system to respond and can leave a person more open to infectious agents. People with lupus should do their best to avoid anyone who has a cold or other contagious illness.
Preventive measures are the best way to stay healthy during the cold and flu season. It is important for you and your wife to talk to your doctors about getting the flu vaccine. Avoid touching your mouth and eyes and wash hands often to cut down transmission of infectious germs. Avoid sharing objects, like drinking cups. Eat right and get enough rest. Manage stress and avoid people who are sick.
For more information:
A bird’s eye view of lupus research from the Lupus Foundation of America’s Education and Research Department