Caring for the Caregiver: What You Need to Know

Dick met Jane. They got married. Dick and Jane were happy and healthy.  Dick and Jane took care of each other. Dick and Jane went out often together and had fun. Dick and Jane planned a wonderful and bright future together.  Then … Jane got sick.  Dick and Jane found out that her illness has no cure.  Now, Dick and Jane have a brand new reality and vision for their future.  Whether you are like Dick and Jane, or perhaps Janet and Jane, or maybe you and a parent …  lupus impacts the lives and possibly the health of more than just the person with the lupus diagnosis.  Caregivers also need support!


A New Story About Dick and Jane

Dick and Jane had very little fun in their lives anymore. They went out less and less. Jane was tired. Jane hurt. Dick watched his partner suffering. Dick now was the caregiver of Jane.  Dick tried to be understanding and supportive and helped her in every way he could. Dick was happy to be helpful to Jane, but he also got tired and frustrated.  Jane felt guilty and sad. Read the following blog and then see if you can help Dick and Jane. While care-giving can be rewarding and fulfilling, it can also be very challenging both physically and emotionally, such as in Dick and Jane’s story.  This blog will provide some tips on how a caregiver, such as Dick, can continue to be healthy and supportive while still having both the ability and desire to continue to care for Jane with her chronic condition.

Care-Giving Can Trigger a Whole Host of Emotions

Becoming a caregiver can bring up several uncomfortable, and even unfamiliar, emotions. It is important to acknowledge that these are normal feelings and to learn to accept all of those feelings, whether good or bad. (If you are a caregiver, don’t judge yourself harshly for your negative thoughts. You are only human, and even the most resilient person would most likely struggle with the same emotions.) In order to learn some tools for caring for a caregiver, it is essential to first understand and acknowledge the emotional challenges that caregivers face. After a diagnosis of lupus or any chronic and incurable illness, it is very common to go through five stages of grieving. Understanding this, and allowing yourself and your loved one to go through each phase can be very helpful as you navigate this new normal.

Some of the challenging feelings commonly experienced by caregivers are:

Anxiety and Worry – As a caregiver, you may be concerned for your family’s financial well-being. You may worry over what will happen to your loved one(s) if something happens to you- who would care for your family? You may have anxiety about the progression of the illness or condition and what the future holds.

Grief – A caregiver may grieve over the life that they had envisioned with or for the partner, child, loved one. If the illness that the caregiver is dealing with is terminal, there will be grief associated with that reality and future loss as well.

Anger and/or Resentment – Anger and resentment may arise from feeling that the caregiver’s life has been taken away from them because of the illness that the loved one has been diagnosed with. There may arise resentment towards others who have not been presented with the same weighing responsibilities.  This anger and frustration can irrationally be directed towards the one with the illness or disability.

Guilt – Caregivers may feel inadequate to handle the situation of illness or disability, which can result in feelings of guilt. They may feel guilty for being impatient, judgmental, or not learning to accept the situation or even for feeling anger or resentment. According to the Family Caregiver Alliance, ”…family caregivers of any age are less likely than non-caregivers to practice preventive health-care and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing care-giving responsibilities.”

They report that caregivers also may experience:

  • Sleep deprivation and fatigue.
  • Poor eating habits.
  • Failure to exercise.
  • Failure to stay in bed and take care of themselves when ill.
  • Postponement of or failure to make medical appointments for themselves.

And are at higher risk for the following serious issues:

  • Substance abuse.
  • Depression – Studies show that an estimated 46-59% of caregivers are clinically depressed.
  • Chronic illness.
  • High blood pressure.
  • A tendency to be overweight.

What can you do as a caregiver to find balance?

As a caregiver, it is very easy to feel off balance. Caring for yourself (your mind, body, and spirit), is probably the most important thing you can do to achieve that balance you need, both for you and for your loved one.  If you are not healthy and well taken care of, you will be of no service to those around you.  Like the emergency airplane drills that require you to place the oxygen mask on yourself before turning to help someone else in need, caregiving is no different. This can be a very difficult challenge because of the guilty feelings that you as a caregiver may feel for putting your needs first. The first step in achieving balance is identifying and acknowledging that meeting your own physical and emotion needs is not only a priority, but is your responsibility to those you are caring for and yourself.

There are many things that a caregiver can do to find balance in their life.  Here is a list of suggestions:

  • Understand as much about the condition/disease that the loved one has. Knowledge is power. The more you know, the less anxiety you are likely to feel.
  • Identify warning signs of stress like irritability, sleep problems, and forgetfulness. Make adjustments before you are completely overwhelmed. Seek help of a qualified medical professional if you think you may be depressed. Please read “Dealing with a Lupus Depression. How do you Cope?” for the signs of depression and resources for assistance.
  • Ask for help when you need it.  Who is caring for you? Friends, family, church, support groups are possible options for those that may be available to assist you. Take advantage of the tools that they are able to provide you: comfort, relief, assistance, a place to be heard, etc. Find a local or online support group to share your feelings and talk with others who may being dealing with similar issues.
  • Follow the tried and true three essentials- Eat well. Exercise. Get enough rest. These three important steps will help you stay healthy, balanced, relieve stress, and maintain clarity.
  • Set a daily goal to make time to plan and enjoy activities outside of your care-giving responsibilities. Have coffee with a friend, go for a walk, watch a favorite show, read a great book or magazine, go to the movies or theater, etc. Release the guilt you may feel for doing this and eliminate the self-talk that may make you feel selfish for taking time for you, as this is part of your responsibilities as a caregiver as well.
  • Encourage your loved one’s independence. Create strategies that enable your loved one to be as independent as possible.
  • Communicate effectively and know/set your own limits. Clear, assertive communication with doctors, family members and any other people involved in your loved one’s care, will allow you to set limits, ask for help, information, and support that you may need.

Caring for the Caregiver

Maybe you would tell Dick and Jane that the first step in caring for a caregiver is realizing that it is not selfish, but imperative that Dick manage and care for his own well-being.  You may remind him that by being good to himself first, he will then be more balanced, willing and able to care for Jane.  Also, you might give Dick this top five list of things to remember:

  1. Surround yourself with supportive people. 
  2. Maintain a healthy lifestyle to achieve balance.
  3. Control stress levels. Fear, anger, and worry only cause the stress that needs avoiding.
  4. Make a list of things that make you feel better- use and add to it daily.
  5. Be aware of negative self-talk and replace it with positive self-talk, reminding yourself of the good and help you are accomplishing in your care-giving.

In Conclusion

You may not solve all of Dick and Jane’s obstacles, but you can perhaps give them a better chance of being successful as they create a new definition and vision for their future together. Our hope at Kaleidoscope Fighting Lupus is that through this blog, you were provided enough tools and information that you can help the caregiver in your life.


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Author:  Karrie Sundbom

Updated by Liz Heintz (2019)

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.