Ambushed by Eldercare? You’re Not Alone
7 strategies to help you cope
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Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.
More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.
“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,” says Barbara Trainin Blank, author, with Barbara Matthews, of What to Do about Mama? A Guide to Caring for Aging Family Members (2013, p. 43).
Blank, a professional writer accustomed to multiple deadlines, admits that, “Taking care of my mother may have been one of the most difficult things I’ve ever had to do in my life” (2013, p. 34). Her mother lived 180 miles away, her brother lived much closer, but in many families the weight of caregiving often falls upon one person.
Cascading stress, sleeplessness, grief, guilt, family conflicts, anger, resentment, exhaustion, and burnout—caregiving takes its toll. Psychologist Dale Larson calls this falling into “the helper’s pit” (1993, p. 38). How to stay out of the pit? Larson says to stop blaming yourself if you feel overwhelmed by caregiving and ask instead, “What can I do about this situation?” (1993, p. 55). Drawing insights from their own experience and a wide range of caregivers, Matthews and Blank offer seven powerful strategies:
- Start Planning. If you have older family members, begin asking about their values and wishes for the years ahead. Do they need to scale down, move into a more accessible home, closer to family members, or into a continuing care community? Determine what needs to be done and the support caregivers will need to handle these challenges. If your relative is intent on staying at home, who will pay the bills? Take this person to the doctor? Assist with meals and the activities of daily living?
- Get Community Support. Find out about support services in your relative’s community, such as the local Agency on Aging. Check out senior services and information online such as ElderCarelink (link is external)or SeniorsList (link is external).
- Reach Out. Network with other family members and your loved one’s neighbors and friends. Check out possible support from your relative’s church or synagogue. And consider joining a caregivers’ support group to share information and personal support.
- Take Care of Yourself. Too many caregivers wear themselves out, getting sick themselves. Watch for signs of stress and burnout. Are you:
- Feeling run down and exhausted?
- Having trouble sleeping?
- Easily annoyed?
- Getting sick more often?
- Having trouble concentrating or remembering things?
- Becoming socially isolated?
- Feeling helpless, depressed, or overwhelmed?
Caregiving is a serious responsibility, but don’t become so engulfed in it that you stop being yourself.
- Make time for a regular stress management practice. Barbara Trainin Blank says she dealt with the challenge of caregiving by walking in the mornings with a friend. Regular exercise is good for both body and mind, relieving stress, activating our immune systems, and helping dispel depression (Rethorst & Trivedi, 2013).
- Take regular breaks. Matthews and Blank emphasize the need for regular “respite care,” especially if you are caring for your loved one’s daily needs. If possible, recruit other family members. Check out senior day services and respite referrals at the local senior center.
- Keep up with your own interests. Blank stayed in touch with friends and participated in community groups—relieved to spend time with people who were not dealing with the chronic stress of caregiving. She continued to do some of the things she loves: creative writing projects, watching old movies, and donating to causes she believes in.
As Matthews and Blank (2013) found in their surveys of more than 30 caregivers, the key is to balance your own needs with compassionate care and realistic problem solving. How you handle the challenge of caregiving will make a major difference in many lives, including your own.
Matthews, B. G., & Blank, B. T. (2013). What to do about Mama? A guide to caring for aging family members. Mechanicsburg, PA: Sunbury Press. http://www.amazon.com/What-Do-about-Mama-Members/dp/1620063158/ref=sr_1_1?s=books&ie=UTF8&qid=1427846005&sr=1-1&keywords=what+to+do+about+mama (link
Larson, D. G. (1993). The helper’s journey: Working with people facing grief, loss, and life-threatening illness. Champaign, IL: Research Press.http://www.amazon.com/Helpers-Journey-Working-Life-Threatening-Illness/dp/0878223444/ref=sr_1_1?s=books&ie=UTF8&qid=1428530954&sr=1-1&keywords=The+Helper%27s+Journey
Rethorst, C. D., & Trivedi, M. H. (2013). Evidence-based recommendations for the prescription of exercise for major depressive disorder. Journal of Psychiatric Practice, 19, 204-212.
Diane Dreher is a best-selling author, personal coach, and professor at Santa Clara University. Her latest book is Your Personal Renaissance: 12 Steps to Finding Your Life’s True Calling.
An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”Posted: May 30, 2014
On page 31 of “What to Do about Mama?” I state:
“Many of the decisions we made and the priorities we established about caregiving were based on the observations I had made as an assessor at the Area Agency on Aging. Families experienced a lot of stress in their caregiving roles and dealt with their challenges in different ways. Some of my impressions were:
- Long-distance caregiving is very difficult. Families worry about their loved one’s safety and how he or she is living. Caregivers expend a lot of time, and probably money, on trying to maintain a good quality of living. Long-distance caregiving makes you feel as if you have no control.
- Providing support for loved ones who live “closer” is also challenging. Caregivers try to balance their jobs and other responsibilities, such as parenting, with meeting the needs of their senior family member. They often maintain two homes, both inside and out, as well as doing other tasks, such as laundry and shopping. Caregivers might have to take time off work to provide transportation and go to medical appointments. The list is endless.
- Families that had attached in-law quarters—close but separate—appeared to me to fare better.”
During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent-living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation.
It was the last bulleted point above that impacted our decision to extend to my mother-in-law the offer to move into our home. When she accepted our offer, my husband and I gave her our first-floor master bedroom suite—bedroom, bathroom, and sitting room—and filled the rooms with her furniture and doll collection.
Another caregiver featured in “What to Do about Mama?” also opened up her home to her mother-in-law. As “Katie” reported on page 172:
“My mother-in-law was living in a 55+ high-rise apartment with no assistance. She was legally blind. She began to have frequent falls and would call the fire department to be lifted. My husband was making frequent visits to her apartment, a one-and-a-half-hour’s drive away. The apartment management stated she was no longer eligible to live within their guidelines because she was unsafe and needed a higher level of assistance. My husband and mother-in-law discussed the options. She had the choice to move to assisted living, or to utilize her finances to add a handicapped-accessible living area onto our home, which was what she opted to do. We built a large living area with a handicapped bathroom that extended off of our existing family room so we could provide the assistance she needed.”
It’s important for seniors to have their own space, and separate quarters are preferable, when possible. The article below discusses “aging in place” and ways to make it possible.
Note: Ironically, Katie is now in a nursing facility due to a traumatic brain injury suffered during surgery. She requires 24/7 care. Her family is exploring ways to bring her home so that she can live in the addition previously built for her mother-in-law.
Making homes senior friendly growing trend as parents move in with kids or “age in place” by Carolyn Kimmel | Special to PennLive The Patriot-News, May 25, 2014
Kate Adams is a trained professional chef, but these days she’s busy cooking at home – for her husband and kids and for her mother, who is living with the family on a semi-permanent basis.
“I’m the typical sandwich generation,” said the 47-year-old Shiremanstown resident. “We’re still trying to figure out how things are going to go and what will be the next step.”
Adams’ parents have a house in Seattle, but after her dad died last fall, her mother spent the winter with her in Shiremanstown. She was due to go back home next month, but she suffered a small stroke several weeks ago that left her with general weakness and some facial paralysis.
“We’re thinking very seriously about the way to make the relationship we have sustainable for as long as possible,” said Adams, who has turned a front room of her house into a bedroom for her 84-year-old mother.
Aging in place, the term that refers to seniors staying in their homes rather than moving to a nursing home, is growing in popularity.
“Statistics show only 5 to 10 percent of seniors end up moving into a facility,” said Matthew Gallardo, director of community engagement and coaching at Messiah Lifeways in Mechanicsburg.
“It’s very difficult to bring somebody into your home to live, but it’s a wonderful option if you can do it,” said Wendy David, executive vice president of the Home Builders Association of Metropolitan Harrisburg.
“Many parents are happy to invest the money into their adult children’s homes instead of into a nursing home,” said builder Jim Mirando
Several options for “Aging in place”
Knowing that her current arrangement isn’t ideal, Adams and her husband are looking into the possibility of adding a modular addition to their home through the services of CareSpace, a Mechanicsburg- based company dedicated to helping people age at home.
“Sharing our lives but having our own dwelling makes a lot of sense to me,” Adams said.
CareSpace owners Brad Hakes, Michael Weaver and Don Steele know firsthand the challenge that Adams faces; they have all been in the caregiver position for aging parents.
“Many people can’t afford to go to a long-term facility so their children – people in the sandwich generation – are left trying to raise their own family and care for their parents in their home too,” Weaver said. “It’s a feel-good thing for both cared-for person and the caregiver to let them stay at home.”
The two-year-old company offers remodeling expertise and something new for this area – the option of adding a modular unit onto a home that can be removed once it is no longer needed.
“The advantage of a modular addition is that it can be added on quicker with less mess and fewer inspections and it can be removed later when it’s no longer needed,” Hakes said.
Some municipalities have zoning ordinances that may require a variance or special permission before the homeowner can proceed, however. CareSpace may eventually offer free removal of the modular units and then revamp them and offer them at reduced cost or no cost to others who need them temporarily, Hakes said.
“If someone has moved a parent into their home and the person passes away in the guest bedroom, there is always that memory of that room being where mom or dad was and that can bother people,” Gallardo said. “A modular unit has the advantage that it can be removed and so that room isn’t there to walk past all the time.”
There are pockets of the country where modular additions are commonplace, Gallardo said.
David said she doesn’t know of any other companies in the midstate that offer modular units. Some of the association’s members, however, have become certified Aging-in-Place Specialists through the National Association of Home Builders. The program focuses on technical, business management and customer service skills to serve the aging-in-place customer.
Jim Mirando, president of Excel Interior Concepts & Construction in Lemoyne, took the certification because he has always been interested in the aging-in-place segment and he sees it growing as baby boomers age.
Remodeling now for later
“Some people want to make modifications so mom and dad can come live with them,” Mirando said. “But some younger people are realizing that, if they like where they live, it makes sense to make the doorways wider, eliminate the barriers and put in some attractive grab bars in the shower now for their own use later.”
Other common adjustments include adding a full bathroom on a first floor, putting in ramps and stair lifts, changing doorknobs to levers and including a shower with a seat, he said.
CareSpace offers appliances with safety and accessible features such as induction coil stoves and roll under kitchen sink and work space as well as monitoring systems to manage medical status, medication taking and communication in the home. The company will also help facilitate a client’s move, including property appraisal, enhancing curbside appeal of a property and physical help with the move.
Whether adding a modular unit or making additions, the price tag can run upwards of $50,000, but, as David said, that’s still cheaper than nursing home care. According to the AARP, the average annual cost for nursing home care is more than $50,000.
“Many parents are happy to invest the money into their adult children’s homes instead of into a nursing home so that they can live comfortably and close to family and then that space can be repurposed down the road,” Mirando said.
Resources growing for an aging population
The need for information and resources related to aging in place is expected to increase. With about 10,000 people turning 65 everyday, 45 percent of homeowners will be age 55 or older by 2020, according to the National Aging in Place Council.
“A lot of people look at the older stage in life as a time of sadness and loss, but we’re trying to change the conversation. Yes, there are those who have health issues or other issues that make this a challenging time, but there are many other people who savor the idea of growing older because they have escaped the rat race and can focus on acquiring a new hobby or passion,” Gallardo said.
When Messiah Village changed its name to Messiah Lifeways and broadened its mission two years ago, the community engagement and coaching program was born for this group for people, Gallardo said.
“It’s combining social work, counseling and being an advocate for people who don’t know where to start. People who are facing issues of aging – either themselves or a loved one – don’t know the issues, the resources and services because they’ve never needed to know before,” he said. “We want to help people look at aging as a positive thing where they can still have a purpose and a positive attitude about what’s next in their life.”
Messiah Lifeways provides non-medical homecare to help people stay in their homes and offers adult care programs and a respite program that allows caregivers to leave a loved one for five to 30 days while on vacation or just in need of a break.
“To help people stay in their homes may seem counter-intuitive to what we are, but we just want to help people be where they want to be,” Gallardo said. “For more and more people, that’s at home as long as possible.”