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Supporting Adult Day Clients and Caregivers

It is not an easy thing to walk alongside and provide care for a beloved spouse or loved one as he or she suffers the effects of Alzheimer’s disease. As we all know, Alzheimer’s disease is a thief – it steals not only memories, but also a person’s sense of identity and purpose as he or she loses the ability to do the things that have long been part of daily life.

Bob Gates lived this journey first-hand after his wife of more than 60 years, Audrey, was diagnosed with Alzheimer’s disease in July 2011.

Bob and Audrey met in 1st Grade and had their first date at the young age of 16. After graduating from high school, the couple married in 1954 and built a life together as best friends and partners. Bob’s career with Bell of PA and Bell Atlantic, which we now know as Verizon, spanned more than 40 years and took the couple to Sunbury, Pottsville, and Altoona before they settled permanently in the Harrisburg area. Audrey was a full-time mother and homemaker, raising their three children and actively helping with grandchildren as well. The couple’s favorite hobby was traveling. They traveled to many different places on the east coast, but returned time and again to Myrtle Beach, SC where they camped right on the water. An outdoorsy family, the Gates enjoyed camping, fishing, hunting, and time spent together around the campfire. The close-knit family also practiced a strong faith, which led them to serve their church and the community out of love for the Lord.

It is no surprise then, that after receiving Audrey’s Alzheimer’s diagnosis, Bob and family banded together to care for Audrey at home for as long as possible. As Audrey’s needs increased and became overwhelming, Bob found respite and support through the Adult Day program on the campus of Messiah Village where Audrey became a client in January 2017. Bob’s objectives in enrolling Audrey in Adult Day were to provide her with increased socialization, keep her physically active and stimulated, and slow the progression of her mental decline. Additionally, Bob knew that enrolling Audrey in Adult Day would allow him to recharge and renew himself as her primary caregiver and give him time to downsize their home and prepare for the next stage of life – the couple’s move to their apartment in Village Square.

“Adult Day is a godsend,” Bob says. “The team members are the most compassionate, caring, professional people I have ever seen. They are genuine – it is not an act. It takes a special kind of person to do what they do, and they are just that…special.”

The Gates moved into Village Square in November 2017, and Bob continued to take Audrey to Adult Day every day until February 2018, when Audrey was discharged from Adult Day and welcomed to the Manchester neighborhood. Now, Bob visits Audrey daily, often utilizing Kibler Bridge, which connects Village Square to Village Center. In the Manchester neighborhood, Audrey continues to receive top-notch care, and Bob is grateful for the ways that team members show love and compassion to Audrey each day.

Despite the challenges and – yes, the sadness – of Bob and Audrey’s journey, Bob is grateful. “We are highly blessed,” he says. “I have met so many people at Messiah Village that I treasure, and I am blessed to be in a beautiful community surrounded by friendly, helpful, compassionate, Christ-like people.”

Written by: Rachel Pease, Director of Development at Messiah Lifeways
Originally published in “Spolight” A Newsletter for Donors and Volunteers, September 2018

 

Caregiver Absenteeism: a Growing Economic Burden

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

– Former First Lady, Rosalynn Carter

The Family Caregiver Alliance® defines a caregiver as, “an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks.” We can also define most caregivers as loving, caring heroes, who give of themselves unconditionally while in many instances sacrificing their own health and wellbeing, relationships and even employment.

According to research from the National Alliance for Caregiving and AARP, in 2015 there were roughly 34.2 million unpaid caregivers in the U.S. providing care particularly for someone over the age of 50. And the average age of a caregiver across the board was 49.2, which falls firmly in the primetime of a career and raising teens or even grandkids. Statistics also show them spending on average 24.4 hours a week providing care for a loved one. This research also indicated that 70% of working caregivers suffer work-related difficulties due to their dual roles. For instance, 61% of caregivers experience at least one change in their employment due to caregiving such as cutting back work hours, taking a leave of absence, receiving a warning about performance/attendance, among others. Furthermore, 49% arrive to their place of work late/leave early/take time off, 15% take a leave of absence, 14% reduce their hours/take a demotion, 7% receive a warning about performance/attendance, 5% turn down a promotion, 4% choose early retirement, 3% lose job benefits, and 6% give up working entirely.¹

Add all these stats and scenarios together, and you have a recipe for a residual burden on caregivers resulting in burnout, depression, poor health and a compromised commitment to their employers. This translates into poor work performance, loss of productivity, plus increases in absenteeism, health care subsidies, paid time-off, sick leave, and FMLA claims. Bottom line – caregiver absenteeism costs the U.S. economy an estimated $25.2 billion in lost productivity. ²

Employers must adapt

This problem will continue to trend upward, especially as the number of baby boomers surges and eventually grow older, frailer and more dependent. Employers will need to be more sensitive and proactive on this issue. Family Caregiver Alliance (FCA) offers employers a number of suggestions for removing barriers to equal employment such as adopting caregiver-friendly work policies and workplace flexibility, along with providing eldercare support, resources, and referral services to caregiver employees.³ [click here for the full list from FCA]. As Rosalyn Carter summarized, the potential for caregiving can affect us all, so the likelihood of being a caregiver and an employee simultaneously is a strong possibility. Are you prepared as an employer?

Messiah Lifeways Coaching encourages these ideals from FCA to employers, especially in the area of education and support. Messiah Lifeways Coaching will be offering its annual workshop entitled “Caregiver Solutions” on September 26, 2018. This workshop is designed for those seeking options, resources, and support as caregivers, especially for those who may be struggling to balance caring for a loved one and their own busy lives. The workshop is also open for professional development and education and to employers looking to gain a better perspective on the issue. Topics include: assessing and avoiding caregiver burnout, care options, costs, and making a plan. If you or a staff member would like to attend, please call 717.591.7225 or register online at www.MessiahLifeways.org/Events.

¹National Alliance for Caregiving and AARP (2015) Caregiving in the U.S.
²Gallup-Healthways. (2011). Gallup-Healthways Well-Being Survey: Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity. Based on the average number of work days missed per working caregiver, assuming $200 in lost productivity per day.
³Williams, J. C., Devaux, R., Petrac, P., & Feinberg, L. (2012). Protecting Family Caregivers from Employment Discrimination

Caregiving and Curbing Sibling Discord

Serving as a caregiver for an ailing parent or parents can be extremely challenging. It can be physically, mentally and emotionally draining. One of the first suggestions or ideal situations as a caregiver is to share the responsibility. Naturally much of this starts with the adult children, especially if both parents need assistance, or the spouse has their own health issues to deal with or has passed away.

As a parent’s health begins to fail, you’d hope all the kids would rally around mom or dad and work in harmony to reciprocate the care in this common reversal of caregiving roles. But not all that surprising, family dynamics, disagreement, and old wounds can make this process very complicated and typically results in one of the kids becoming the primary caregiver. This can create resentment and even more conflict between family members as the burden grows.

Caregiving Equity

Innocently enough, some siblings cannot offer as much help simply due to geography or their own family dynamics. If mom lives down the street from you, but lives 300 miles from your brother, let’s face it – there’s going to be some caregiving inequity. Work schedules, retirement, personal health issues, and dependent children can also create disparity among sibling caregivers. Although, there are solutions to alleviate some of these issues which you will see below.

Less excusable is the exaggeration of some of the above obstacles or the occasionally uttered excuse of, “well dad liked you best, so he’d rather you take care of him” or “I’ll do my part,” then they disappear or gradually minimize their efforts.

Lastly, are the inexcusable reasons for not partaking in the caregiving effort, such as simply turning a blind eye or a purposeful absence due to a held over grudge or poor relationship with siblings or that parent. But some old wounds can run very deep, and estrangement is sometimes irreversible.

Putting Differences Aside and Gaining Perspective

Whatever the reason the family dysfunction exists, I think most can and must get beyond these obstacles. Open communication and planning are essential. Full disclosure: my older brother and I are not very close. We communicate very infrequently. But there have been some recent instances where we needed to talk for the sake and well-being of our parents. If we could do this, most people can. The point where your parent is in need is not the time for conflict or jockeying of control. If things escalate, here are some suggestions to share the load.

• Call a family meeting – Include everyone to discuss the situation to work toward a common goal, especially for out-of-town siblings. Help them understand the need for care and intervention, as they may not be able to detect nor accept reality from so far away.

• Draft a care plan – The plan should be a well-balanced with well-defined roles. Divide up tasks by family member. For instance, if one sibling works in health care, they could take on all of the medical appointments. Or the person with good business sense might handle legal issues and/or financial issues. Furthermore, much of this can be done from afar and is a great tactic to keep siblings, who live far away, doing their fair share. They can also pay for services like home care or housekeeping services to help out. They could also host or come stay with mom every few months to take over and give others a break. Lastly, have everyone sign the plan to maintain accountability and keep everyone on task. That plan could also include placement options for further on down the line when living at home is no longer safe or feasible.

• Utilize technology and outside resources – Fall-detection and home-monitoring and video systems can create and maintain a safer home environment to make caregiving more efficient and less time consuming. Also hired services, like non-medical home care, respite care, and adult day programs can help alleviate the burden of care between family members.

 • Listen to each other and stay flexible – Maintain lines of communication. Appreciate everyone’s perspective along with their position and capacity of being a caregiver, and remember circumstances may change and alter the division of labor. And once again, don’t expect total equality. It’s very rare that caregiving roles can be divided equally.

“Try to separate your parent’s needs from your own—and yesterday’s battles from today’s decisions” – Family Caregiver Alliance

 • Lastly, remember why you’re doing it – Caregiving can be frustrating and contentious at times, especially if you feel that some else is not doing their part. But ultimately, you must work together to take care of the person or persons that took care of you for all those years.

For more help, call 717.591.7225 or email Coach@MessiahLifeways.org or check out the following resources:

“What to Do about Mama?” by Barbara Matthews & Barbara Trainin Blank, published by Sunbury Press

“The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer ’s Disease, Related Dementia and Memory Loss” by Nancy Mace M.A and Peter Rabins, M.D. M.P.H. published by The Johns Hopkins University Press.

Or visit the Family Caregiver Alliance at www.caregiver.org


This article first appeared in the August 2017 edition of Blue Mountain Living Magazine.

 

Everyone is a Potential Caregiver

A Caregiver Goes Above and Beyond

 

“An effort made for the happiness of others lifts us above ourselves.”

Lydia M. Child


As a caregiver working with older adults, often one may find that they spend a lot of time reminiscing with the person whom they are caring for. Their memories may take them to positive places emotionally, and sometimes they may provoke sadness or regret. Both the reminiscing and mixed emotions are an important part of this stage of life.

Recently, Sharon Harris, a Messiah Lifeways At Home caregiver, was working with a client who shared something from her past that was still troubling her. Sharon went above and beyond in her service to this client to address this concern, and the following letter was received from a family member in response to Sharon’s generosity and compassion.

“I would like to take this opportunity to commend Sharon Harris, a Messiah Lifeways employee, for going above and beyond in her care and concern for my mother. Sharon has worked for Mom in the role of caretaker and also housekeeper for several months. During this time, she has been attentive to Mom’s needs, both physical and emotional.

One incident in particular reflects the caring exhibited by Sharon. In conversation, my mother apparently shared with Sharon the fact that my brother had died in 1988. His death was a delayed consequence of his service in Vietnam in 1967-68. My mother was not in possession of any records related to his service or his medals, a fact which saddened her. Sharon must have relayed this information to someone at the Navy Base because less than a week later, Mom received a letter and a commendation thanking Mom for the services of her son. The letter was on behalf of a grateful nation for the sacrifice made by my brother and his family.

These documents were undoubtedly sent to make a mother feel better about the death of a son almost thirty years ago. Only a caring and supportive caregiver would hear and understand the meaningfulness of this recognition. Sharon Harris has made it possible for my mother to hold in her hand a testimony to the sacrifice made by my brother. I want to thank her for that.”

Like Sharon, so many caregivers go above and beyond the call of duty, and we hear those stories from those we serve who are so touched by the fact that you have gone the extra mile. We know that you are not in this line of work because it is easy or glamorous, but because you truly care for other people. Thank you so much for ALL you do!

Christina J. Weber, MSW, LSW
Director of Home Care Services

”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 coach@messiahlifeways.org.