Resources for families and caregivers of mesothelioma patients.
Being the caregiver to a terminally ill family member or friend is a difficult job and one most of us hope we’ll never have to do. When you’re involved in caring for a person with malignant mesothelioma, the tasks you face will probably seem daunting and sometimes impossible. You will be relied upon for all sorts of responsibilities, from everyday tasks like cooking, cleaning, and shopping, to bathing and feeding your loved one, to managing their finances. It can seem like more than one person can handle.
Maintaining your own mental and physical health is very important while caring for someone with mesothelioma. If you’re sick or burned out, you can’t care for the patient properly. It’s okay to ask for help or to take some time off when needed, even if it’s just a few hours spent with a few friends or by yourself, doing the things you enjoy doing. When you’re feeling poorly, the quality of care you can provide will diminish as well, so it’s best to take time to refresh when necessary.
You may need to look outside your circle of family or friends for support. You can probably find a support group for caregivers of cancer patients at a hospital or other medical facility near you. If there isn’t a group in your area, there are many online support groups run by people who know the ins and outs of dealing with cancer patients.
Whether in person or online, support groups can offer:
- A forum where you can vent your frustration, anger, or other emotions. Others in the group who have been in the same position can help you work through these difficult feelings.
- A source of information sharing on mesothelioma, including current advances in mesothelioma treatment and other helpful information that may help you or your loved one.
- A place where you can enjoy social interaction with others. Many caregivers tend to be house-bound, so the opportunity to get out and be with others who have like concerns can be a relief and a welcome respite from your burdens. (If you’re using an online group, try to use a computer that’s not in the patient’s home, so you can “get away” for a while.)
- Reassurance that others are facing the same challenges as you. Support groups let you spend time with people who understand what you’re dealing with, especially when friends and family members just don’t seem to get it.
To locate a mesothelioma support group near you or an online support organization, check out:
- American Cancer Society
- Cancer Support Community (formed through a merger of The Wellness Community and Gilda’s Club Worldwide)
Counseling Services for Family Members
Feelings of denial, guilt, blame, depression, anxiety, and anger are common among family members of terminally ill patients. You may feel like you can’t do enough to help your dying loved one or feel guilty about things that happened between you in the past. You may also be reluctant to speak to your dying loved one out of fear of saying the wrong thing. An experienced counselor can discuss these feelings and alleviate some of those overwhelming emotional burdens while helping you better communicate with your loved one about their illness.
Through counseling, you and your loved one can learn how to speak honestly to each other without fear of offending or upsetting. Most counselors note that this is the ideal situation in the end and one that provides the most peaceful transition to death for both the terminally-ill patient and those he loves.
Many hospitals have psychologists or other medical professionals on staff with experience working with the families of terminally ill patients. Hospice-based counselors also offer one-on-one or group sessions for the patient’s family.
When an older person dies or is dying, they are leaving behind a spouse with whom they have shared most of their life. Experienced grief counselors – both medical doctors and spiritual leaders – can specifically address the needs of the elderly family member who is grieving, especially the spouse of the terminal patient, who must suddenly face the reality of life without this treasured partner. Issues like loneliness, depression, or assimilating back into the society without their spouse may need to be discussed.
Young children of terminally ill patients also need specialized counseling and many hospitals and hospice programs provide this as well, addressing issues like the loss of security, facing changes in the future, and dealing with the finality of death – an issue that is often confusing for a child. Clergy members can also help with this, if so desired.