Coping with Caregiving

Take Care of Yourself While Caring for Others
Source: https://newsinhealth.nih.gov/issue/dec2015/Feature1

It can be a labor of love, and sometimes a job of necessity. A total of about 43 million U.S adults provide unpaid care for someone with a serous health condition each year. These These often unsung heroes provide hours of assistance to other. Yet the stress and strain of caregiving can take a toll on their own health. NIH-funded researchers are working to understand the risks these caregivers face. And Scientists are seeking better ways to protect caregivers' health.

Many of us will end up becoming a caregiver at some point in our lives. Chances are we’ll be helping out older family members who can’t fully care for themselves. Such caregiving can include everyday tasks, such as helping with meals, schedules, and bathing and dressing. It can also include managing medicines, doctor visits, health insurance, and money. Caregivers often give emotional support as well.

People who provide unpaid care for an elderly, ill, or disabled family member or friend in the home are called informal caregivers. Most are middle-aged. Roughly two-thirds are women. Nearly half of informal caregivers assist someone who’s age 75 or older. As the elderly population continues to grow nationwide, so will the need for informal caregivers.

Studies have shown that some people can thrive when caring for others. Caregiving may help to strengthen connections to a loved one. Some find joy or fulfillment in looking after others. But for many, the strain of caregiving can become overwhelming. Friends and family often take on the caregiving role without any training. They’re expected to meet many complex demands without much help. Most care-givers hold down a full-time job in addition to the hours of unpaid help they give to someone else.

“With all of its rewards, there is a substantial cost to caregiving—financially, physically, and emotionally,” says Dr. Richard J. Hodes, director of NIH’s National Institute on Aging. “One important insight from our research is that because of the stress and time demands placed on caregivers, they are less likely to find time to address their own health problems.”

Informal caregivers, for example, may be less likely to fill a needed prescription for themselves or get a screening test for breast cancer. “Caregivers also tend to report lower levels of physical activity, poorer nutrition, and poorer sleep or sleep disturbance,” says Dr. Erin Kent, an NIH expert on cancer caregiving.

Studies have linked informal caregiving to a variety of long-term health problems. Caregivers are more likely to have heart disease, cancer, diabetes, arthritis, and excess weight. Caregivers are also at risk for depression or anxiety. And they’re more likely to have problems with memory and paying attention.

“Caregivers may even suffer from physical health problems related to caregiving tasks, such as back or muscle injuries from lifting patients,” Kent adds.

Caregivers may face different challenges and risks depending on the health of the person they’re caring for. Taking care of loved ones with cancer or dementia can be especially demanding. Research suggests that these caregivers bear greater levels of physical and mental burdens than caregivers of the frail elderly or people with diabetes.

“Cancer caregivers often spend more hours per day providing more intensive care over a shorter period of time,” Kent says. “The health of cancer patients can deteriorate quickly, which can cause heightened stress for caregivers. And aggressive cancer treatments can leave patients greatly weakened. They may need extra care, and their medications may need to be monitored more often.”

Cancer survivorship, too, can bring intense levels of uncertainty and anxiety. “A hallmark of cancer is that it may return months or even years later,” Kent says. “Both cancer survivors and their caregivers may struggle to live with ongoing fear and stress of a cancer recurrence.”

Dementia can also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent study found that out-of-pocket spending for families of dementia patients during the last 5 years of life averaged $61,522, which was 81% higher than for older people who died from other causes.

Research has found that caregivers for people with dementia have particularly high levels of potentially harmful stress hormones. Caregivers and care recipients often struggle with the problems related to dementia, such as agitation, aggression, trouble sleeping, wandering, and confusion. These caregivers spend more days sick with an infectious disease, have a weaker immune response to the flu vaccine, and have slower wound healing.

One major successful and expanding effort to help ease caregiver stress is known as REACH (Resources for Enhancing Alzheimer’s Caregiver Health). Nearly a decade ago, NIH-funded researchers showed that a supportive, educational program for dementia caregivers could greatly improve their quality of life and reduce rates of clinical depression. As part of the program, trained staff connected with caregivers over 6 months by making several home visits, telephone calls, and structured telephone support sessions.

“REACH showed that what caregivers need is support. They need to know that there are people out there and resources available to help them,” says Dr. John Haaga, who oversees NIH’s behavioral and social research related to aging.

The REACH program is now being more widely employed. It’s been adapted for use in free community-based programs, such as in local Area Agencies on Aging. It’s also being used by the U.S. Department of Veterans Affairs and by the Indian Health Service, in collaboration with the Administration for Community Living.

“We know how to support families caring for an older adult. But that knowledge is not easily accessible to the families who need it,” says Dr. Laura Gitlin, a coauthor of the REACH study and an expert on caregiving and aging at Johns Hopkins University. “Caregivers need to know it’s not only acceptable, but recommended, that they find time to care for themselves. They should consider joining a caregiver’s support group, taking breaks each day, and keeping up with their own hobbies and interests.”

To learn more about aging-related caregiver resources, contact NIH’s National Institute on Aging at 1-800-222-2225 or niaic@nia.nih.gov. To learn about cancer-related caregiver resources, contact NIH’s National Cancer Institute at 1-800-422-6237. See the Web Links box to find a variety of online caregiving resources.

November is National Caregivers Month

November is National Caregivers Month. Caring for an elderly parent, spouse, grandparent, neighbor, or friend is truly an act of love— whether the elder lives in our home or their own home, in a senior care facility, or even in another city or state. While the levels and kinds of care provided are varied in type and intensity, we understand that caregiving can be very rewarding, and it also can be frustrating at times, or perhaps exhausting. To celebrate the devotion of caregivers, and in an effort to offer support, 6:8/Honoring Our Elders will host a gathering for caregivers on Thursday, November 19 from 6:30 – 8:00 pm, at Leystra’s Restaurant. Drinks will be provided by 6:8. We hope you’ll treat yourself to a well-deserved piece of pie or other dessert! This will hopefully be the first of ongoing monthly gatherings like this, so we plan on this evening to engage in some strategizing around what would be most helpful when bringing caregivers together. Please join us in this conversation, and invite a friend who might also be caring for an elder. For more information, please contact Shirley Kelter, sakelter@mac.com or 608-370-3565.

How are you?

“How am I? Well, I ache all over, I can’t see well enough to read a good book anymore, I’m lonely, I don’t remember whether I just ate breakfast or lunch… What a stupid question!”

The elderly woman who snapped at me— wasn’t the first. I’d been warned before that “How are you?” isn’t really a very helpful or astute line of questioning. Yet, it slips out so easily! It’s meant to be kind of a way to take the temperature of a person’s life, in a moment. We don’t always notice we’ve even asked, it’s so automatic— and less often do we really expect or want to hear an honest answer. OR, do we actually listen to the answer. Right? Because, don’t most people respond, “Fine,” “Okay,” or “Good”—whether they mean it or not? Automatic question, automatic answer. It’s not much more than a half step up from “Hi!” Just a well-intentioned, friendly greeting, and might be a bit of a hollow question.

One gentleman I used to visit actually wrote a poem about how inane the question is! He must have been pretty frustrated when he composed it, because it dripped with caustic humor and commentary. Whenever I’d visit him, I’d have to pause outside his door to think up what I was going to say instead of the automatic, “How are you today?” It was a good exercise! Every once in a while I’d slip up if I was in a rush— and got an earful!

So, here are some ways I entered the room and conversation, after hello: “It’s always good to see you, and I’m looking forward to being with you today.” “What’s been filling your time and your thoughts these days?” “Anything on your mind today?” “What would you like to talk about today?” Nothing too creative, admittedly… but a bit more intentional, and both of us have to think about what we’re going to say and hear. And usually, when I ask a more thoughtful question, I am gifted with thoughtful responses, a more honest telling of life’s ups and downs, and perhaps a good story or two!

Compassion

Community comes in many forms. For those living in assisted living facilities, the people who sit at your table for meals become a small community. Some residences switch people around regularly— so you get to know different people (or, at times, so conflicting personalities can move to less stressful ground!). At other places, you might be seated next to the same people for months or years. 

An elderly person I recently visited shared with me her sadness about one of her table mates, who had just been diagnosed with an advanced cancer, and might die soon. She told me they had been together “a long time,” and that, while their lives had held little in common, they had grown to like and respect each other very much over the years.

This lovely woman had tears in her eyes as she said, “I don’t know what to say to her. So, at the end of each meal, I simply reach my hand over to hers, and hold her hand for a few moments. And she holds mine. I hope she knows how much I care.” 

I am so touched by the simplicity and depth of her compassion, and by the gracious receiving of it by her friend. In times of sorrow, there may be no words to share. In fact, sometimes the words we choose are quite unhelpful (despite our good intentions). What a blessing— to be in the presence of elderly people who understand this, and from a lifetime of experiencing friendship, can teach us about the precious gift of compassion.

I wish God would just take me.

“Sometimes I wish God would just take me.” I can’t tell you how often I hear this in my visits with the elderly, usually in a hushed and confessional tone. Last week a woman I’d just met shared this with me, after tearfully telling me about her estranged daughter, a granddaughter who lives blocks away and never visits, and the necessity of moving out of her home recently, following a serious fall. She now lives in a nursing home, has a roommate, few if any visitors, and she had to whittle down her possessions to fit into half a room. She looked me straight in the eyes and said: “I want to die now.”

What do I say? Sometimes: “Uh-huh (accompanied by a heartfelt nod).” Other times, I’ve asked: “Have you mentioned that to God?” I try to put myself in the person’s shoes, and wonder if I might have that same desire to go home to God after a long life that’s getting increasingly challenging, lonely, and fraught with loss. It’s a comforting idea, I’m sure.

But, God’s ways are a mystery, and who knows why some people live to be 104 and others are with us such a short time? Why is one person clobbered by loss after loss, while another seems to glide through old age effortlessly? I can see why some older people have had enough! Who knows why any of us are still here? We shake our heads together in wonder.

I could grope around for a good response to their wish for life to be over. Sometimes I’ve quoted Psalm 139, how “darkness is not dark to God.” But, really, it’s not my job to smooth over a person’s pain. I’m there to sit with them in their pain.

And, to remind each and every elder I visit that he or she is deeply loved by God, tenderly held, and cherished. Whether life be easy or tough, this much is true. Always.

Introducing Honoring Our Elders

Honoring Our Elders

Chaplain and Program Director — Shirley Kelter

YES! This was the thoughtful and heartfelt response from John and Sarah to another call they heard from God and our community. 6:8’s newest venture is Honoring Our Elders - a spiritual support and companioning ministry to elderly members of the Sauk Prairie
 community. I am so pleased to work with 6:8 in this way. With the support of the Sauk Prairie community, we will celebrate the wisdom, service, and stories of elders; and provide support to those who might be lonely, dealing with any variety of loss, coming to the end of their life’s journey, struggling with life’s challenges and questions, or simply would benefit from a dose of spirit-lifting!

Recently, I heard a great description of a “chaplain:” story-catcher. It really rings true! In every visit with elders, I am privileged to hear inspiring, fascinating, funny, and sometimes pain-filled stories. My heart is touched over and over. Many of our elderly I visit live in the nursing home or assisted living residences of Maplewood or Pines, others in their own homes. Some are very lonely, having only periodic brief conversations with caregivers or occasional contacts with family. The opportunity to tell their story, share their worries, reflect on their losses, tap into their courage, and voice their hopes - unhurried - is a need and gift for them (as well, for those with lots of family support and activity). Often I will pray with an elder I visit, if they wish, but sometimes they are simply content to talk. Or cry. Or laugh!

As I entered one woman’s assisted living apartment at Christmastime, I was startled by a bird happily

chirping - right by my ear! I looked around for a birdcage, and the resident clapped her hands and laughed, saying, “I love when that happens!” She showed me the little cardinal ornament by her door that senses motion and starts chirping whenever someone walks in or out of her door. She told me it’s her favorite Christmas decoration, and it led to a discussion about her interest in birds and nature, about her children who fill the bird feeders outside her windows and the joy that brings her - and one story led to the next. Almost an hour passed in a blink! When I stood to leave, her eyes were sparkling and her smile told me she was waiting for the little “watch bird” to start chirping again when I left.

Another woman I found resting in her bed on Christmas Eve. This woman, I knew, struggles with speech, due to a stroke, and suffers from some dementia. I sat by her bed, held her hand, and softly sang Christmas carols to her. She seemed to enjoy listening to the familiar songs, and soon began singing with me - as best she could - a beautiful smile lighting up her face. I have often found music to be a powerful ministry tool - reaching places in the heart and memory that talking alone might miss. Making a connection like this is such a sacred gift - truly I felt a sense of being on “holy ground.”

These are only two of many, many stories I could share with you! I hope you’ll consider being part of Honoring Our Elders, helping me grow this important ministry. In the near future we will begin developing a network of volunteers, Friends of Elders - individuals, families, youth - who will share in the joy of story-catching! Stay tuned for more details.

2015! A new year of possibilities - for 6:8, our Sauk Prairie Community, and especially its elderly population. Help us honor and celebrate the gifts they are to us!