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Living With Mesothelioma
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Caregiver Assistance

Caring for a family member or friend with cancer is a tough job. For those helping mesothelioma victims, the task may seem even more difficult.

Because mesothelioma is such a rare disease -- only 2,000 to 3,000 patients a year are diagnosed with it – that is makes finding the right doctor, getting treatment and seeking the best legal and financial help all the more difficult. That means a caregiver’s job is markedly more challenging. While the patient handle the physical and emotional challenges of treatment, caregivers are tasked with dealing with everything else, from household responsibilities to scheduling appointments.

Giving Comfort When You’re Hurting

In most cases, caregivers are family members. They take over the daily tasks that the mesothelioma patients can’t handle, including helping with dressing, bathing and moving, handling the bills, and communicating with the medical team about new and emerging medical problems. All of this alone is stressful, but when you consider the emotional toll, the stress can be crushing. For this reason, it’s important to seek out your own comfort system:

  • Know your limits – By setting clear limits about what you can and cannot do, the patient and the medical team can build a support team around you as well.
  • Encourage independence – Being a caregiver does not mean that you do everything. It’s ok to encourage your patient to be independent and do independent tasks.
  • Learn – Research as much as you can about mesothelioma. The Mesothelioma Support Network offers free informational packets that are full of helpful resources.
  • Accept your feelings – Just because you are a caregiver, doesn’t mean you have to turn off your emotion. Feeling anxious, angry, guilty or grief-ridden are common feelings.

Finding Your Support

Your loved one has you to count on, but who do you have? More than anyone, caregivers must have a strong and loving support system to lean on. Online support groups are great for caregivers who have limited resources and few opportunities to leave the house. At the same time, outside groups -- whether they’re through the local hospital, church or mesothelioma support organizations – allow caregivers to gather with like-minded people in a judgment-free setting.

An important aspect to your personal support system is having the chance to take an emotional break. Whether it’s for 20-minutes or the whole day, caregivers need to immerse themselves in things other than caregiving for periods of time:

  • Don’t forget your friends – Take some time with your friends and do things unrelated to caregiving.
  • Take daily time to relax – Whether that means yoga or reading, take some time everyday to de-stress.
  • Maintain balance – It’s easy to become entrenched in caregiving and give up your own existence. Remember what makes you special.
  • Keep up with your own health – You won’t do anyone any good if you ignore your health symptoms. Remember to visit the doctor and keep on top of your medical conditions.

Finding Services

Caregiver stress and burnout are very real problems that can make assisting a mesothelioma patient challenging. There are some recognizable signs of caregiver burnout that should not be ignored:

  • Having less energy and feeling constantly tired.
  • Withdrawal from normal social activities.
  • Feeling irritable, depressed and hopeless
  • Getting sick more often.
  • Increased impatience with the person you’re caring for.

Being a caregiver does not mean you have to sacrifice every aspect of your life. If you don’t take care of yourself, you can’t take care of your loved one.

In addition to helping patients, the patient advocates at the Mesothelioma Support Network can help caregivers find the support and services they need. Our patient advocates encourage caregivers to get some care themselves through a variety of means:

  • Divvy up the responsibilities – You don’t have to shoulder this burden alone. Call on family members or friends to help with tasks. Equally, our patient advocates can help find support and medical resources in your area.
  • Let go – It’s easy to lose focus during this time and micromanage every aspect of your loved one’s care and treatment. You can’t control everything.
  • Seek professional help – If you are feeling overwhelmed, it’s OK to visit a licensed mental health counselor or your doctor for some assistance. This doesn’t mean you are a bad caregiver or you don’t care.
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