Helping the Helpers

TIPS FOR CAREGIVERS:

The burden of having as well as caring for someone with a terminal illness is a lonely, long, monotonous path of psychological and often physical suffering that can be exhausting, seemingly endless and very isolating.  It can also be a very meaningful time.  Both the patient and the caregiver will benefit from encouragement, hope and a sense of being connected with others.  

Get support. This cannot be overemphasized.  Recently a caregiver of a advanced cancer patient told me that he is now  "living with the unimaginable." Research tells us that a person's ability to handle tragic circumstances is directly affected by the amount of support that they have.   

 

Ask for help.  Tell people specifically what they can do to help because often they want to help but don’t know how. Identify 2 or 3 individuals that you can touch base with on a regular basis.  

 

Ask about palliative care. Palliative care is not hospice care.  Palliative care is intended to alleviate suffering when death is inevitable based on a person's medical condition, but death is not necessarily imminent. It does not mean that any medications or treatment to provide a possible cure will be stopped.  It can be provided by one or more members of a multidisciplinary team.  The focus of palliative care is to provide additional support to your loved one and family on an as-needed basis, helping the family make important decisions and improving your loved one's comfort, sense of control and overall quality of life.  

Find humor and laugh as much as possible.  Robert Frost once said, "If we couldn't laugh we would all go insane."  Laughter is truly medicine.  Keep your heart open to the lighter side of things - seek out the goodness in life and in other people.  Watch movies that make you laugh.  Learn and repeat dumb Dad jokes.  Connect with your inner child by watching how children do it - relearn how to experience joy in the moment. 

HOW FAMILY AND FRIENDS CAN HELP:

Conversation:

  • Listen, ask questions, be fully present.   If the patient is fortunate, they have the gift of time for meaningful reflection about their life and relationships.  Don't be afraid to talk about the reality of death if they are talking about it. 

  • Avoid offering suggestions, or remedies or possible cures.   They may realize that you are only trying to help, but in truth you are giving them an additional burden.  If you insist on being the exception to this rule and sharing with them some wonderful insight, recognize that you are really taking care of yourself (your desire to "fix") above taking care of them (their need for unconditional support and encouragement).  They are likely overwhelmed by the circumstances of their health and diagnosis and offering them suggestions about treatments or diets is just not helpful.   It is very likely that they are getting "helpful suggestions" from multiple sources and it can be exhausting, not to mention inadvertently suggesting possible cause which adds to their feelings of guilt (i.e.,"Do I have cancer because of my diet? I am not taking the right supplements? Too many supplements? Should I be utilizing an alternative therapy?" and so on).  Respect the patient's right to do this their way and recognize their ability to do their own research and utilize the internet or consult with specialists if they are so inclined. 

  • Avoid coming across as emotionally needy.  While empathy is helpful and appreciated, be aware of how this situation might be triggering complicated feelings in yourself about other past situations or losses unrelated to the patient.  Your loved one may feel extra burdened to put their own feelings aside and take care of your feelings.  They have limited energy and this will not be helpful to them.  

Actions:

  • Don’t wait for them to ask you to do something.  Similarly, don't ask them to call you if they need anything because they seldom will.  Look for things that they need and just DO them.  Ideas include:

    • a ​card of encouragement

    • an invite over for a cup of coffee

    • a meal, or gift card to a restaurant that delivers in their area

    • gift card for groceries

    • a get-well card with a personal note inside

    • show up and clean the bathrooms, or vacuum their house.  A text is nice but painless.  Taking time to stop by, run an errand for them, invite them over, or even writing a note and mailing are meaningful gifts because of their greater sacrifice of time and commitment.

  • Check on them often.  They may be feeling isolated and alone and may not have the energy to reach out to others.  Phone calls are always encouraging.  There may be needs that you will identify, including specific prayer needs.  It might be helpful to set up a reminder on your phone to give them a call or text on a regular basis.