Mir Monthly Information Resource
Helpful tips for family caregivers

Coping with new situations

If you are caring for a relative with serious health problems, you are probably in unfamiliar territory. For most of us, the shaky feelings of uncertainty are very unpleasant. We feel vulnerable outside our comfort zone. We worry we will do something wrong.

According to noted researcher Dr. Brené Brown, to protect ourselves we often turn to three strategies:

• Perfectionism. Believing that if we work hard enough, we can get it right.
• Future casting. Thinking about all the possibilities and things that could go wrong.
• Numbing. Pushing our feelings down and aside.

Although these strategies might help short circuit the discomfort of vulnerability, Dr. Brown warns that they also rob our lives of meaning. When we are vulnerable, we are emotionally exposed. This type of openness is frequently the springboard to life’s most meaningful moments: Changing careers, falling in love. In the context of family caregiving, it might be starting a difficult family conversation or caring for a relative in their last few weeks of life.

It is when we take risks and navigate terrain outside our comfort zone that we experience courage, growth, creativity, joy, and self-esteem.

Here are tips for embracing vulnerability as a family caregiver and getting to the other side:

• When you feel shaky inside, pause, take a breath. Consciously remind yourself that none of us is perfect. You are not alone. We are all worthy. All you can realistically ask of yourself is to show up and do your best.
• Consider feelings of uncertainty as an opportunity rather than a threat. Think of one step you can take. Something that feels a bit risky but not overwhelming. Maybe ask a question or ask for help. Or allow something to be done “well enough” rather than strive for perfection.
• Give yourself mental accolades when you have faced your fear. Many caregivers, in hindsight, take pride in the ways they had to grow to meet the challenges of caregiving. It takes courage to be open to change. Let it sink in that you have this capacity. And then take your next risk!

How cancer affects relationships

Cancer’s impact taxes families in extraordinary ways. There is no right or wrong way to respond to cancer. It’s more a matter of finding a balance between the coping style of your relative and the style of those around him or her. How a family has addressed difficulties in the past is a good indicator of what may occur now.

To weather the journey, keep the following in mind:

Emotions tend to run high. Cancer lends an air of peril to life. As a result, you and all your family members may react strongly, becoming extra irritable or sensitive, even to little things. If you are the target of the patient’s outburst, it’s most likely because you are the safest person. It may be small comfort, but know that the anger is at the cancer, not at you.

Sibling rivalries often reemerge. With increased contact, it’s not uncommon for childhood tensions to resurface. If you cannot find ways to set them aside, consider engaging a therapist to help you resolve old wounds. A social worker or care manager can facilitate a family meeting.

Roles change. As adults, much of our self-worth is about what we accomplish. Your loved one may find it difficult to adjust to new limitations. Similarly, you may not be accustomed to being in the lead. Other family members may also balk at the shift from expected roles. Give yourselves some leeway to learn as you go.

“Normal” is a blessing. There’s a natural tendency to treat an ill person as fragile. Encourage your relative to do as much as he or she can independently. Strive to maintain a whole-person perspective. Talk about topics he or she has enjoyed in the past and promote staying engaged with friends, hobbies and “non-cancer” activities.

You're far away, and she's failing

It’s the phone call everyone dreads: “Mom’s not going to beat this one. It’s incurable.” Strong emotions surge for any adult child. But the situation is made all the more difficult when you live far away.

Establish a relationship with the doctor.

• Ask for an honest sense of timing. Are we talking months? Weeks? Days?
• What will the final stage look like for your loved one? Will there come a time when he or she will be bedbound? Will need to be fed? Will be in pain? Will spend most of the time sleeping?

If you can make only one visit before he or she dies, when would your loved one and/or the local caregiver prefer that to occur? Being there at the exact moment of passing is difficult to pinpoint. Your loved one may spend several days or weeks in and out of consciousness.

Increase your boots-on-the-ground resources. Find out about skilled service providers to help as your loved one needs more intense or intimate care.

• A care manager can coordinate needed services and give you regular reports. As a rule, Medicare does not reimburse for care management, although a long-term care insurance policy may pay for this service.
• Hospice can provide valuable support for those with a life expectancy of six months or less. Hospice is a Medicare-reimbursed service that offers periodic visits from a nurse, a bathing aide, and a volunteer. The hospice social worker can be a valuable resource to help you find what you need.

Make connections meaningful. When you do talk, whether in person or on the phone, reflect on your good times together. Speak from the heart as much as you can about how much your loved one has meant to you. (Now is NOT the time to rehash old hurts.) For both your sakes, focus on the positive in the time remaining.