Click above to listen to Episode 30 of the Caregivers Corner: What to do About Mama?” Expectations & Realities of Caregiving. I really enjoyed the opportunity to talk with Matt Gallardo, Senior Director of Community Engagement at Messiah Lifeways.
(Formerly knows as The Coach’s Corner)
Matt Gallardo: “In Episode 30 we talk about the book “What to do About Mama?” Expectations & Realities of Caregiving with co-author Barb Matthews. She along with Barbara Trainin Blank open their hearts and bear their souls to share their challenging, heart wrenching, and insightful journeys as caregivers. Their personal stories, along with a host of other caregiving contributors, give detailed perspective on this physical, mental, and emotional roller coaster that caregiving entails.” To purchase a copy:
- Sunbury Press (publisher): www.sunburypressstore.com/What-to-Do-A…ategoryId=-1
- Amazon: www.amazon.com/dp/1620061988/
Thanks Matt! I enjoyed our conversation and hope your listener’s will too.
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.”
Thanks to Matt Gallardo from Messiah Lifeways for his book review. http://www.messiahlifeways.org/blog/
“What to Do about Mama”- Book Review
Everyone is a potential caregiver – BGM & BTB
We have not done a book review in quite a while on the blog page. However, What to Do about Mama is categorically worth the read. It should not only capture the attention of previous and current caregivers, but it can also provide a potential glimpse into the future for nearly all of us. As the book states, “everyone is a potential caregiver” either for an aging parent, spouse, sibling as well as a disabled child, client, friend, or neighbor. The role of caregiver could be as short as a few weeks or for others it could last decades. Nonetheless, very few of us will ever be devoid of this altruistic and challenging role.
Co-authors Barbara G. Matthews and Barbara Trainin Blank open their hearts and bear their souls to share their challenging, heart wrenching, and insightful journeys as caregivers. Their personal stories, along with a host of other caregiving contributors, give detailed perspective on this physical, mental, and emotional roller coaster that it entails. Readers should heed the warning of how expectations, sharing responsibility, and the relationship between other family members can really deteriorate and/or shift. Furthermore, it highlights many of the unexpected realities of caregiving such as dealing with financial, legal, and medical issues of the care recipient.
Affirmation is also a big part of this book, particularly for those who served as a caregiver in the past. The relatable experiences can provide some absolution from the feelings of guilt, resentment, or remorse while “in the trenches.” If someone felt inadequate or felt guilty, What to Do about Mama shows that they are human and they should be proud of the job they did. For some of the contributors, I think the book was also a way to get those negative feelings off their chest without feeling judged. It helped them move beyond those difficult memories and to remember more of the joyful ones spent with their loved one.
For current caregivers, this is must read. As the authors express, this is not a caregiving textbook, and it is not written by “caregiving experts” but rather a guide featuring a collection of experiences and insights for caregivers by caregivers. It provides real world scenarios, anecdotes, and support to those in the position of caregiver. It tells the tale of what to do, what not to do, what did or didn’t work for them or what could work for you. They also reference funding sources as well as other resources to help your loved one age in place.
Lastly, the book also goes beyond caregiving in the here and now. It examines the residual effects of caregiving even after the loved one has passed, including the emotional aspect, relationships between survivors, and some of the legal and financial issues that can linger.
I recommend What to Do about Mama for anyone faced with the sometimes rewarding and sometimes unenviable task of caregiving for which most of us will encounter at some point in our lives. If you would like to learn more about this book as well as other resources to help caregivers manage and embrace the role along with avoiding caregiver burnout, please call the Messiah Lifeways Coaching office at 717.591.7225 or email firstname.lastname@example.org.