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Caregiver Stress

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Updated January 30, 2012

When you are caring for someone who is going through the challenges of a leukemia or lymphoma diagnosis, you may feel like you always need to “be strong” for them and you may wonder why you are so stressed out. After all, you aren’t the one with the cancer! But caregivers have a different and unique group of physical and emotional stressors that may not be easily identified.

Here are some frequently asked questions about stress in caregivers.

Since I started being the main caregiver for my sister who has leukemia, I feel like I am totally overwhelmed and constantly under stress. She never asks a lot of me, and I feel guilty because she has cancer and I don’t. It makes my worries seems so unimportant. What do I have to be stressed about?

Caregivers have many stressors and worry that can lead to feeling overwhelmed. Some examples of things that often worry caregivers are:

  • Understanding a new diagnosis and all the medical terminology, information, medications and technical details that go along with it
  • Worries that you could do more or that you aren’t able to do enough
  • Trying to do everything by yourself
  • Wondering about whether your loved one is going to live or what the outcome of their therapy will be
  • Adjusting to a new role, if you have never had the responsibility of being a caregiver before
  • Financial worries and burdens
  • Knowing how to talk with your loved one
  • Lack of support
  • Fear about death, both of their loved one and their own
  • The realization that cancer can happen to anyone, including yourself

I guess I don’t really feel like I am stressed out, but I don’t feel like myself either since I started caring for Sandra after her diagnosis. How would I know if I was truly under stress?

Stress can have a number of different (and seemingly strange!) effects on both your physical body as well your emotions. Some common signs of caregiver stress include:

  • Difficulty sleeping
  • Fatigue
  • Fear
  • Sadness
  • Overwhelmed
  • Feeling distant or detached
  • Anger
  • Guilt
  • Muscle aches and pains, especially in the back, neck and shoulders
  • Anxiety

I feel like I don’t know what to say to my husband anymore. He always used to be the one looking after me, but now things have changed and I am always taking care of him.

A cancer diagnosis can have a “push-pull” effect on close relationships. In some cases, the illness and the intimacy of caring for someone can bring you closer together. However, the stress of the situation and the changes of your role in that person’s life can also cause anger and resentment- for both parties.

The fact that you are having to do more for your husband than you used to may be making him feel bad and stressed out too. There is no way of knowing unless you talk about it! Maybe you can work out a plan to help even out the workload and make both of your lives easier.

For example, your husband may not be able to run around and do errands or groceries, but he might be able to help out by reading the kids their bedtime story or folding laundry. These kinds of compromises can be beneficial to both of you -- he is still able to feel like he is contributing to the household and you get a spare pair of hands helpjng out.

When good communication doesn’t happen in these situations, invariably problems arise. The caregiver ends up feeling more resentful, and the person with the illness feels angry or depressed because they are being “babied.”

I feel like I am all alone. I feel so stressed and overwhelmed, but I don’t have anyone I can talk to. Certainly I can’t talk to my mom. I don’t want her to know how much her myeloma is affecting me, she should just focus on getting better. What can I do?

The most important thing that you can do to manage your stress is to talk about it! Even if you feel like there is nobody you can lean on and nobody who will understand what you are going through, you might be surprised! Here are some ideas:

  • Ask your cancer center or local chapter of the Leukemia and Lymphoma Society about support groups for caregivers in your area
  • Talk to your loved one’s health care team, in particular the mental health and social work care providers
  • Bring up the topic with other relatives or people that are close to the person with cancer. They may be experiencing some of the emotions that you are, or be able to relate to them at least
  • Members of a church group or clergy
  • Your own doctor or healthcare provider

Many people try to avoid burdening the person with cancer with their feelings or concerns. For the most part, this just leads to further stress in both parties. While it’s true that you probably want to keep in mind that they are working through issues themselves, it’s OK to let them know that you are having a hard time with their cancer too.

Sometimes I get so overwhelmed by caring for everybody that it feels like I could crack up. Is this normal?

While it is normal to feel overwhelmed by the responsibilities of being a caregiver, it is important that you keep an eye on how much stress you are carrying around with you. Studies have shown that it is just as common for caregivers to become depressed as it is for cancer patients.

It is necessary while you are taking in the responsibilities of caring for your loved one that you are also paying attention to the responsibility of caring for yourself.

Make sure you take the time to do a periodic check up with yourself, being mindful of the signs and symptoms of depression as well as the signs of caregiver burnout. If you feel like you might have moved from simply being sad to a full blown depression, you will need to recruit help from somebody who specializes in mental health care for further support and investigation.

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