As a caregiver you already have so much to deal with providing care to the person who is ill. Other family members may also be struggling to deal with the situation and you might become frustrated that you need to deal with this too. You need strategies for helping solve the situation! What you need to know is that everyone reacts to a family health crisis differently. Some people suddenly become frightened and confused and may even distance themselves from the situation. Other people may become angry and frustrated and lash out at others looking for someone to blame. Others may move into “fix-it” mode.

All these reactions are examples of “displacement” or a defence system that inhibits what the person is really feeling. This built-in defence system takes over to “displace” the potentially threatening ideas, feelings, memories, wishes or fears. The problem with displacing feelings is that they negatively affect the person’s ability to relate to others.

If you feel stressed dealing with the family member who is “displacing” their true thoughts and feelings, then imagine how that person is feeling? Their anxiety and stress is taking an enormous amount of energy. The best strategy for you as the caregiver is to acknowledge the truth and their fear and sadness. Put names to these things. Then ask them to roll up their sleeves and help! As the caregiver, you could say, “I know you are frightened and sad. I am too. But, we all need to help. This is how you can help: Don’t avoid what is making you uncomfortable, run toward it. Run toward (the person who is ill) and tell them you love them. Then let’s talk about how you can help.”

Circle of Care

Besides family members, the circle of care may include: Physicians, Care Coordinators, Pain and Symptom Management Consultants, Palliative Nurses, Personal Support Workers, Chaplains, Family, Friends and Volunteers. In all likelihood you will never have as much of these people’s time as you would like. Therefore, communicating clearly with others on the team, and being clear about what they are doing can help to alleviate stress and confusion. See Topic #11

Understanding the Health Care Team

1. Write down the names of all the different healthcare professionals involved in the care.
2. Now write down their role in the care.
3. Be sure to keep track of who these people are. There may be several of them.
4. The person that you are caring for may need to be reminded too of who these health care professionals are and why they are involved.

Part of building a strong team at home is identifying:

• What needs to be done?
• Who is available to help?
• What role fits each team member best?

Listed below are some items that might need to get done. You can edit this list to fit your situation. Record each item, then mark whether you are able to do the item or if you think that you might need help.

Things I need

Self-Care

• Time for me to rest, take a break, have a shower, get some fresh air or exercise
• A chance to let off some steam

Home

• Home maintenance (e.g., painting, light repairs)
• Laundry (e.g., washing, ironing, shopping for supplies)
• Groceries and meal planning
• House Cleaning
• Grass cutting, snow removal, and/or gardening
• Safety checks (e.g., daily confirmation that the person is safe)

Daily Living Needs

• Transportation to and from appointments
• Bathing and showering
• Meal preparation
• Home safety adaptations (e.g., remove fall hazards, add bathroom rails, etc.)

Health Care

• Arranging doctor/care provider appointments or determining if the doctor can make house visits as the person declines
• Communicating with health care providers and explaining to the care recipient (ask questions, take notes, etc.)
• Medication (e.g., placing orders, picking up, monitoring use)
• Exercise

Financial

• Paying bills
• Accessing benefits
• Banking (know bank location, credit cards, lines of credit)
• Financial Planning (managing investments)
• Paying taxes
• Sale of assets (home, vehicle)
• Assisting with paying for medical equipment or services

Legal

• Organizing important documents
• Power of Attorney (up to date and securely stored)

Who is available to help?

For those tasks that you need help with, identify some people or organizations that might be willing or able to help. Next to their names, list some things they might be good at, or what they might enjoy helping with. For example, a Visiting Hospice Volunteer might be able to help with very specific tasks.

Name:

How They Can Help:

Read this scenario.

Jim has diabetes and suffers from a number of serious side effects as a result. Jim used to be the life of the party. If a good time was going on, you knew Jim would be at the centre of it. Barb used to be the quieter one in the couple, but now, given Jim’s health challenges, she has taken on greater responsibilities for family finances, arranging family get-togethers, as well as managing the household. She often feels stressed by the load that she carries. Jim has four brothers who are also married. For many years, Jim and Barb’s best friends have also been his brothers and their partners. The families all live within 45 minutes of one another. Jim still enjoys going to the local Royal Canadian Legion, where he and his brothers have been members for decades. With Jim’s changed health status one of the brothers and his partner have become increasingly distant, rarely calling or visiting anymore. Barb knows that Jim’s feelings are hurt by this behavior but he doesn’t want her “to make a fuss”.

2. What advice would you give Barb on what she could do to help resolve why Jim’s brother and his wife are acting this way? Think about your advice before checking the suggested response below.

Suggested response:

As the caregiver, say, “I know you are frightened and sad. I am too. But, we all need to help. This is how you can help. Don’t avoid what is making you uncomfortable, run toward it. Run toward Jim and tell him that you love him. Then let’s talk about how you can help.”

3. How could a community hospice volunteer help?

Suggested response:

Call your community hospice and ask!

Use these additional resources to learn more about the topic of handling family members’ difficult reactions.

Centre for Addiction and Mental Health
Trauma is a natural emotional reaction to terrible experiences that involve actual or threatened serious harm to oneself or others. However, for some people, the thoughts or memories of these events seriously affect their lives long after any real danger has passed. This is posttraumatic stress disorder (PTSD).
http://www.camh.ca/en/hospital/health_information/a_z_mental_health_and_addiction_information/Post-traumatic/Pages/pstd.aspx

Canadian Virtual Hospice “When to Tell the Children: Preparing Children for the Death of Someone Close to Them”
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx