Amy-Pelegrin-ASB-8-What challenges do mesothelioma patients and caregivers face when dealing with their diagnosis
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Exclusive Content | Amy Pelegrin: What challenges do mesothelioma patients and caregivers face?
Amy-Pelegrin-ASB-8-What challenges do mesothelioma patients and caregivers face when dealing with their diagnosis

Exclusive Content

Amy Pelegrin: What challenges do mesothelioma patients and caregivers face?

Written by Michelle Whitmer | Edited By Walter Pacheco | Last Update: March 1, 2024

The struggles facing mesothelioma caregivers typically involve disputes among family members, stress around providing care and coping with difficult emotions such as guilt and resentment.

Mesothelioma caregiver conflicts usually involve family members with differing opinions about the best way to care for a loved one. These conflicts are a significant source of stress. Most people struggle to resolve these conflicts because they are so emotionally charged.

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The overall strain of caring for someone with mesothelioma can lead to feelings of anger and resentment. Some caregivers feel guilty for experiencing these feelings and wonder if it makes them a bad caregiver. It doesn’t. Every caregiver copes with deep feelings of anger and resentment.

Understanding how common it is for families to experience conflicts, and how normal it is to feel difficult feelings about caregiving, helps caregivers accept and process what they are going through.

With the right guidance, help and support, mesothelioma caregivers can get through this difficult time.

What Should I Do When My Loved One Refuses Care?

Resistance to change is a normal and common response following a mesothelioma diagnosis. Consider the following approaches when your loved one refuses or resists care:

  • Introduce Changes Slowly: As the cancer progresses, your loved one will need more care. Introduce these changes slowly. It takes time to adapt to change, especially change that may feel scary or disempowering.
  • Remain Patient: Try to remain patient if your loved one initially resists care. When they refuse your help, wait out their frustration and try again. This could mean waiting for only 30 minutes until you offer care again, or it may mean waiting a day until you try again.
  • Understand the Purpose of Denial: Many mesothelioma patients experience varying degrees of denial to protect themselves from recognizing that they need help. Part of this denial is refusing to believe that mesothelioma will shorten their life. Be respectful of the psychological benefits of denial for the patient and reach out to a mental health professional for guidance.
  • Help Them Feel Empowered: Letting your loved one do as much as they can on their own can be empowering. Consider asking them to handle some things around the house that won’t cause stress or affect their health.
  • Address Their Concerns: Listening to your loved one’s concerns may help you understand why they are refusing care. Once you understand their reasons for resisting care you can address them in constructive ways.
  • Bring in a Trusted Ally: Sometimes caregivers need to bring in a trusted friend, family member, doctor or spiritual advisor to counsel a loved one about accepting care. If this approach doesn’t work, consider hiring a care manager to receive professional guidance.

Admitting that you need help involves recognizing that you are losing your abilities. If your loved one feels like they’re becoming helpless they may resist care to gain a sense of independence. Finding ways to integrate help and support over time and helping them feel empowered as much as possible can make adjusting to life after a mesothelioma diagnosis a little easier.

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Dealing with Resentment and Anger

Caregivers cope with feelings of resentment and anger. Consider the following tips for managing these feelings:

  • It is important to recognize these feelings as a normal response to a difficult situation.
  • Take it easy on yourself when you experience difficult feelings.
  • Allow yourself to feel how you feel and try to find healthy ways to express your emotions and stress release.
  • Talk to a social worker or mental health professional if you need help processing your feelings in constructive ways.
  • Take regular breaks from caregiving.

It’s important to take time to be kind to yourself as a caregiver. A 2021 research study suggested that psychological distress experienced by caregivers of malignant mesothelioma patients was related to the traumatic experience they endure while providing care for the disease.

Amy-Pelegrin-ASB-5-How do you help caregivers of mesothelioma patients
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Siblings

It is common for siblings to experience conflicts about providing care to their parent with mesothelioma. These conflicts typically involve:

  • Disputes over how to properly care for a parent
  • Uneven distribution of caregiving responsibilities
  • Lack of effort or commitment
  • Unfair control over the situation
  • Who will be given durable power of attorney for health care

Solutions for these conflicts involve a lot of communication, openness and patience.

Siblings who struggle to find solutions that feel fair should reach out to a mediator, care manager, social worker or mental health therapist. Working with one of these professionals can help siblings reach agreements that feel fair and appropriate for the problems at hand.

Spouse

Spouses caring for their partner with mesothelioma may experience intermittent or lasting resentment and anger.

These feelings may arise from different caregiver struggles or interpersonal conflicts with your loved one:

  • Anger at the Disease: It is common for spousal caregivers to feel angry about their loved one’s diagnosis and resent the way it changes their spouse and their relationship. These difficult feelings reflect the deep love and compassion spouses have for each other. No one wants to see their partner suffer and many people don’t know how to handle it.
  • Resenting Response to Care: Spousal caregivers may also develop anger or resentment towards the way their loved one responds to care. It is normal to develop these feelings if their partner resists care, criticizes the way care is given or has a bitter attitude about needing care. Dealing with these struggles can contribute to stress and caregiver burnout.
  • Lack of Sex Drive: Another struggle for spouses is lack of sex drive following a mesothelioma diagnosis. Treatment side effects and cancer symptoms can lead to reduced sex drive and may inhibit sexual ability.

Solutions involve rebalancing the relationship as much as possible.

Spousal caregivers should consider hiring a caregiver to help with the most difficult tasks. This step may foster more quality time spent together and help the couple reconnect with how their relationship used to feel. Doing things together to promote intimacy helps couples coping with lack of sex drive.

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Establishing Clear Roles

Families that come together to care for a loved one with mesothelioma may experience conflicts as they establish the caregiving roles everyone will play.

Maintaining clear communication regarding everyone’s concerns and needs helps families establish clear roles. Staying flexible and open to change fosters a dynamic that helps caregivers respond well if established roles shift.

Consider creating a care plan that outlines the caregiving needs of the mesothelioma patient. Primary and secondary caregivers can then agree upon who will take responsibility for the different roles.

Mediation

Mediators are trained and licensed professionals who help disputing parties reach a resolution. Certain mediators are specially trained to help resolve family conflicts over caring for an elderly or sick parent.

You may consider hiring a mediator when family members cannot reach an agreement about caring for a loved one with mesothelioma.

Consider Hiring a Care Manager

Care managers are health care professionals who advise families on how to offer the best care to a loved one. They are particularly helpful to families that don’t have prior caregiving experience and don’t know where to begin.

Care managers also help resolve complex behavioral problems such as when a loved one refuses care. They can also help families sort out caregiving conflicts.

Managing Guilt

Caregivers experience feelings of guilt when they believe they aren’t offering the best care to their loved one. All too often, caregivers feel guilty for experiencing resentment or anger about their caregiving role.

This kind of guilt is difficult to shake because you’re judging yourself over unavoidable, imagined or simply natural and human faults.

Managing caregiver guilt involves giving yourself a lot of slack. Be gentle and easy on yourself. Try to become comfortable with the gap between your idealized vision and the reality of caregiving.

Understanding Grief

Many mesothelioma caregivers feel anticipatory grief.

While grief is typically considered a feeling that people experience after the death of a loved one, anticipatory grief is a kind of grief felt before a loved one passes.

Coping with anticipatory grief is challenging for people in a caregiving role. Sometimes feelings of grief arise suddenly and without warning, jarring caregivers into a difficult emotional state.

Reach out to a trusted friend for support and make alone time for yourself to do activities you enjoy. Take deep breaths when feelings of grief come up and do something comforting, such as brewing your favorite cup of tea or taking a relaxing bath.

Emotional Stress

Processing emotional stress requires time and paying attention to feelings. Caregivers are often strapped for time and usually find themselves focused on the feelings of their loved one rather than their own feelings.

It’s important for caregivers to carve out time for themselves. Time spent away from caregiving allows caregivers to decompress and process how they feel.

Consider the following tips for processing emotions:

  • Try to accept your emotions. It helps to understand that your emotions aren’t right or wrong, but rather provide information about your goals and needs.
  • Recognize your emotions, try to identify them and stay with feelings until they fade.
  • It’s OK if you find yourself resisting emotions. Be gentle and easy on yourself.
  • Do something comforting after you experience a difficult emotion. Take a bath, go for a walk, make a cup of tea or watch your favorite TV show.
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Financial Strain

Caregivers often report financial strain as a source of conflict and stress. Handling mounting medical bills and the cost of medical supplies and medication can be overwhelming.

Consider the following tips to cope with financial strain:

  • Talk to a social worker about local, state and national resources to save money on medical costs.
  • Hire a financial advisor to see where you can save money and better balance your finances.
  • Research financial aid available to people diagnosed with mesothelioma.

Spousal caregivers who are new to handling financial matters may lack confidence in their ability to take control of finances. An adult child in a caregiving role may struggle to take over their parent’s finances, or they may find themselves financially supporting their parent. But working with experts can help alleviate some of the anxiety around managing finances.

Finding Support

Many forms of support are available to caregivers. Consider the following tips to find support:

  • Caregiver support groups are available online and in person. Inquire at your loved one’s cancer center about local support groups and go online to research online support groups.
  • Hospice care offers several forms of support to caregivers including counseling and help at home.
  • Many cancer centers staff social workers and mental health therapists to support the families of their patients. Ask a staff member about available resources.
  • Reach out to local churches to inquire about services and resources for caregivers and the elderly.

Even though you may worry that asking for help will make you a burden, ask anyway. Most people want to help; they just need to know what kind of help you need. With the right support, mesothelioma caregivers can overcome struggles and resolve family conflicts.

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