Challenges & Resources for Caregivers | Online Support Group

Caregiver helping patient with medicine

Caring for a loved one with cancer presents challenges. The experience can test your faith and character, and it can reveal the light and dark parts in all of us.

At the same time, it can feel like an honor to care for the ones we love in their time of need. Caregivers often cherish the tender moments spent with their loved one amid the stress and challenges.

It’s tempting to want to do all caregiving duties alone. But it just isn’t ideal or healthy for only one person could do all the housework, meal planning, financial management and full-time caregiving.

Sometimes caregivers encounter hurdles that get in the way of getting the support they need. These hurdles may be personal, such as overcoming guilt, or external, such as coping with financial challenges.

With encouragement, caregivers can overcome these hurdles to get the support they and their loved one need to live well throughout the cancer experience.

Maintaining Control: “I want to do it all.”

Cancer brings up lots of unknowns and things we can’t control. For example, people can’t change the fact their loved one was exposed to asbestos, nor can they control how quickly mesothelioma progresses.

In an attempt to feel some degree of effect in their lives, caregivers may cope by focusing on things they can control. Caregivers can fear losing control of their homes or relationships and may try to take on as much as possible to feel in control of more aspects of life.

However, this coping method can lead to burnout. Avoiding burnout helps caregivers show up as their best selves for their loved one. Allowing outside help with housework, running errands and meal planning offers caregivers stress relief and extra time for themselves.

Receiving Help: “I don’t want to burden others.”

Accepting help from others isn’t easy for everyone. Some people enjoy a strong sense of independence and often cringe at the idea of others helping with their responsibilities.

For some, there’s a stigma of weakness associated with receiving help. They believe accepting help from others means they aren’t strong enough to handle life or may possess weak character.

Overcoming personal beliefs like these takes grit and determination. In reality, people become better caregivers when they receive a lot of support from family, friends and the community. It takes courage to ask for help, but the reward is decreased stress and improved quality of life.

Guilt: “I should be able to do it all.”

Lots of caregivers worry that taking a break will compromise their loved one’s health.

Putting your loved one’s care in the hands of another can bring up a lot of guilt. Many caregivers worry about the quality of the care their love one will receive and often imagine the worst will happen.

This kind of worry is normal and is called catastrophizing. When we catastrophize, we look to the future and think of all the things that could go wrong, and we construct a reality around those thoughts and truly begin to believe the worst will happen.

But there are steps to take that will help prevent your worries from manifesting, such as taking time to find a health care professional you trust and training them on the way you like things done.

Financial Challenges: “I can’t afford it.”

Affording quality health care services that give caregivers a break is a challenge for many families. The cost of cancer care is expensive, and the bills can add up quick.

Treatments like chemotherapy can cost thousands of dollars and follow-up appointments get even more costly when imaging scans are necessary. Affording professional caregiving services on top of regular cancer care isn’t easy.

Thankfully, forms of financial assistance are available to people with cancer, such as travel grants, Social Security Disability, Medicare and Medicaid. Many states cover the cost of respite care, which allows caregivers a break by placing the patient in a qualified facility that meets their health care needs.

Mesothelioma patients may also apply for financial compensation through asbestos trust funds or file a lawsuit against the manufacturer of the asbestos product that caused their cancer. Applying for various types of financial assistance can help families afford health care services like at-home care, which gives caregivers a break to relax and take care of themselves.

Some people enjoy frugality and are reluctant to spend money on caregiver services, even when they know they’d benefit. Overcoming that frugal tendency could offer immense stress relief for caregivers.

Questions and Answers from the October 2015 Online Support Group

Patients and caregivers asked a number of questions during the recent online support group. Here we include answers to some of them.

Q: Is severe fatigue normal after radiation therapy?

A: Yes, it is normal to experience various degrees of fatigue ranging from mild to severe following radiation therapy (RT). Fatigue may sneak up on patients as they progress through their RT treatment plan. They may feel tired at first and wind up feeling extremely fatigued by the end of treatment.

Fatigue isn’t just feeling tired or drowsy, it can also make people feel weak and as if they have no energy. Patients may want to sleep more often than normal and may want to rest all day. Keep in mind that fatigue can linger for months after radiation therapy is completed.

Tips to manage cancer-related fatigue were shared in the May 2015 online support group.

  1. Abrahms, S. (2012, November). Managing caregiver emotions. Retrieved from http://www.aarp.org/home-family/caregiving/info-11-2012/managing-caregiver-emotions.html
  2. Grohol, JM. (2313, January 30). What is catastrophizing? Retrieved from http://psychcentral.com/lib/what-is-catastrophizing/
  3. Cancer Research UK. (2014, May 2). Radiotherapy tiredness. Retrieved from http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/radiotherapy/side-effects/general/radiotherapy-tiredness

Joining the team in February 2008 as a writer and editor, Michelle Whitmer has translated medical jargon into patient-friendly information at Asbestos.com for more than eight years. Michelle is a registered yoga teacher, a member of the Academy of Integrative Health & Medicine, and was quoted by The New York Times on the risks of asbestos exposure. If you have a story idea for Michelle, please email her at michelle@asbestos.com.

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