The other day I was talking with Mark, a brain tumor survivor and former archaeologist. Once a world traveler and recognized expert in his field, he now lives with debilitating seizures, and with anxiety-producing word-finding difficulties. He told me, with a sigh, that his doctor said he should feel grateful to be alive. His wife of 15 years joined our conversation. She was grateful to have her husband by her side, but she was also anxious to leave for a three-day holiday trip — a fun getaway with her sister, and a much needed break from caregiving. We were at a local residential respite center (a service not available in all states but fortunately a quality program available in this town), where her husband’s medication, personal care and safety would be taken care of in her absence. Mark eventually shared with me that his holiday gift to his wife was to agree to the respite center stay. A gift of gratitude for the love and care she provides him.
Navigating through a jolly holiday season and wishes for a wonderful new year when living with a chronic, debilitating health condition or caring for someone might have you thinking, “this is no holiday!” But researchers are documenting how expressing thanks can lead to a healthier, happier and less-stressed life. Noted expert Robert Emmons defines gratitude in part as, “… an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.”
Family caregivers are often portrayed as the epitome of goodness, and rightly so. Time and again spouses, adult children, other relatives and friends who care for loved ones with Alzheimer’s, stroke, cancer and other health conditions, dig deep to put the needs of another before their own needs. They move personal life priorities to the back burner — work, family, travel, their own health — to ensure the safety and well-being of another person. But no well is bottomless and no caregiver can give in a limitless manner, always being kind, helpful, supportive, compassionate, honest and more, without doing harm to themselves. In this season of giving, acknowledgement of the giving that goes on all year long can get overlooked.
As a caregiver, there are ways to cultivate a greater sense of satisfaction coupled with a culture of gratitude this holiday season, both for the person receiving care and for yourself. To get a start, try these exercises to help focus your actions:
Connect with people: Holiday time is both about spending time with people we truly enjoy, but also with those to whom we feel obligated. Here’s a very specific exercise to help identify who receives your precious time during this season. Write down the names of family and friends with whom you’re likely to spend significant time this holiday season. Put a (*) by the names with whom you have a relatively simple, uncomplicated, mutually beneficial relationship. Mark an (x) by those people who make you feel uncomfortable (tense, inferior, frustrated, guilty, etc.). Ideally, would you like to spend (1) more, (2) less, or (3) about the same amount of time with each person on your list? Put a 1, 2 or 3 after each name.
Embrace the season’s activities: We often enter into the holidays wanting to be inclusive and accommodating. Every year family and friends gather to share meals and exchange gifts. Why should this year be any different? Write down all of the activities you look forward to or anticipate doing as part of the holidays. Here are a few to help you get started: Buy gifts, decorate, make travel plans, plan and shop for holiday meals, cook, bake, clean, host guests, host grandchildren, volunteer for charitable causes, participate in spiritual or religious activities, participate in special family traditions (gather at the family cabin, make tamales, sing at the local nursing home) and more. The list may sound both endless and compelling. Now revisit your list. Put a (*) by the activities that make you smile and feel content. Mark an (x) by the activities that you do not have time to fully enjoy, or that seem to have lost their meaning or become a burden for you, the person you care for or your extended family.
Cultivate a sense of goodwill towards yourself and others: At this time of year there is more pressure to appear happy and joyful. Feeling and expressing your true feelings, especially if these truths appear negative to others, can be discouraged and seen, at the least, as not acting in the spirit of the season. Here are some of the feelings that family caregivers have expressed to us, as well as some from those on the care receiving end of the relationship. See if any of these fit for you: Ambivalence, anxiety, anger, boredom, disgust, embarrassment, exhaustion, frustration, happy, grateful, grief, guilt, impatience, irritability, jealousy, loving, lack of appreciation, loneliness, loss, an opportunity to give back, peaceful, resentment, sadness, satisfaction, scared, thankful, tired, worried, hopeful. List any other feeling you know to be true for you. Now put a (1) by the feelings that get in the way or disrupt your life, a (2) by the feelings that just are there but don’t really get in the way, and a (3) by the feelings that you want to cultivate to feel more often.
What is doable and what reflects wishful thinking? To complete this exercise, draw a line down the middle of a piece of paper. On the left side of the page note your 1’s from the first exercise, now write down the (*)’s from the second exercise, and add the 3’s from the third exercise. List the remaining items on the right side of the page. When you have finished scan your lists. What steps can you take to include more of the people, activities and feelings from the left side of the page into this holiday season or the near future? What items reflect wishful thinking but more realistically represent something to hope for some time in the future?
Here are few examples of actions to take this season:
The gift of listening: Putting everything else aside to focus your full attention on a loved one. Listen to them tell you about their life; ask questions about the origin of family stories and rituals, share a chuckle over past adventures.
Communicate gently but honestly: Tell the person you care for or the person who cares for you, sensitively but honestly, what you need and how you would like to meet that need. It’s better than speaking angrily or resentfully when the other person doesn’t know why. Sometimes you might just need some time away from the care situation. Try these suggestions for communication with someone living with brain impairment.
Revisit expectations: If you are caring for a family member living with moderate to severe dementia or Alzheimer’s disease, making heroic efforts to include your relative in a holiday gatherings can be tense and exhausting. Sometimes it can work wonderfully when family members and friends pitch in so that you can take a break to enjoy yourself. But, too often caregiving tasks and anxiety about actions by the person with dementia can drain any enjoyment from your time at the event. Encourage family and friends to spend time with your family member with dementia by visiting the person where they live, rather than at loud, busy family gatherings. A smaller gathering in more familiar surroundings gives visitors and hosts a much greater chance for meaningful time together. Here are more tips for navigating dementia care during the holidays.
Cultivate gratitude in your life: What would it feel like to focus more of your thoughts on what is good in life? If you have time, consider keeping a gratitude journal, writing down a few items each day. You’ll find a link to more about this project in the resource guide below. Reading just a few sentences from your journal before you go to bed and when you wake up can help you to focus on the good in your life. As a way to communicate within the family, some people create a “gratitude bowl” where everyone in the household jots down things they are grateful for on a slip of paper and places them in the container. Read a few of the slips out loud each day when you’re together at meal time or post a note on the refrigerator.
Navigating the holidays on top of all of the other daily activities of life for those living with chronic illness can be fraught with frustration and a sense of disappointment. Giving thought to what is truly important for you and your family, while taking steps to communicate your interests to others can open up opportunities for you to have a less stressful and more satisfying season.
We wish you Happy Holidays!
Information and resources:
Family Caregiver Alliance (FCA) offers an extensive online library of free education materials for caregivers. The publications, webinars, and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease specific organizations and more.
Helpful FCA Publications
- Taking Care of Yourself: Self-Care for Family Caregivers
- Ten Real-Life Strategies for Dementia Caregiving
- Navigating Travel with a Loved One Who Has Alzheimer’s Disease
- The Greater Good: The Science of a Meaningful Life
Leah Eskenazi, MSW, is Director of Operations at Family Caregiver Alliance.