Depression, For the Caregiver, Living with Lupus, Main Blog, Stress, Where to Find Help

Caring for the Caregiver: What you need to know

Caring for the Caregiver

A new story about Dick and Jane.

shadow-couple-400-bwDick 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. Jane got sick. Dick and Jane found out that her illness has no cure. Dick and Jane went out less and less. Dick and Jane had very little fun in their lives anymore. 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. Dick and Jane have a brand new reality and vision for the future.  Dick and Jane both need support, what should they do now?  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 hopefully we can 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 difficult emotions

Caring for CaregiverBecoming 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:

And are at higher risk for the following serious issues:

What can you do as a caregiver to find balance?

Coping With LupusAs 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, care-giving 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:

Caring for a Caregiver

couple-in-grass-400Maybe 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.  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.

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 Molly’s Fund Fighting Lupus is that through this blog, you were provided enough tools and information that you can help the caregiver in your life.

If you found this blog helpful, please share it on your social media sites by clicking the icons below. We also welcome your comments!

 You have just read Caring for the Caregiver, you may also be interested in the following topics as well:

Lupus/Chronic Illness: The Mind/Body Connection

10 tips for Parents Living with a Chronic Illness

Invisible Illness

The Gratitude Attitude: Inspirational Quotes


Hey, like this post? Why not share it with a buddy?

Article by : Karrie Sundbom

Karrie is the Digital Marketing Manager at Molly's Fund and responsible for innovating content for all of Molly's Funds online communications, creating memes and graphics, writing the MFFL Newsletter and main lupus blogs, as well as developing and managing the content for all of our social media platforms. Connect with Karrie on LinkedIn and Google+ .
comments powered by Disqus