Life is full of joy and woe
and when this we rightly know
Safely through the world we’ll go
(from William Blake)
Every Wednesday for 6 weeks a small group of strangers unburdened their hearts and shared their personal lives on Zoom bound by a common experience. They were all caring for an elderly or disabled family member or friend, and they were all seeking help on how to do it the very best they could.
Some were spouses of elderly people at the early stages of dementia, where the ordinary absentmindedness of old age was increasingly morphing into a forgetfulness that found them wandering outside, lost, not knowing how to get home. Another suffered from a neurodegenerative disease that rendered him mute and unable to care for his most intimate needs. One had been struck with early onset Alzheimer’s while still relatively young in her 50’s, upending dreams of future travels and retirement. Other loved ones were housebound, needing someone to visit, to bring some food and sit and talk a while.
All were confronting the cognitive and physical decline of a partner, friend or parent, watching the person they loved fade away, leaving them increasingly alone with a gaping hole in their hearts, uncertain of the contours the near term would take before the inevitable end. Besides the grief and emotional stress, some also were having to juggle how to keep a job while taking care of their loved one, or how to take care of an aging parent and children in their home at the same time.
Feeling overwhelmed by everyday tasks, the stress of having to make critical healthcare decisions, the increased financial burdens of out-of-pocket costs, dealing with guilt, lack of sleep, navigating the family conflicts that arise between siblings when an elderly parent needs help, and trying to balance multiple responsibilities are common problems family caregivers face.
Two experienced and compassionate professional caregivers from the Thurston-Lewis-Mason Area Agency on Aging (TMLAAA) led the sessions for the Powerful Tools for Caregivers class, providing a space for the participants to find solutions to practical problems and give voice to the emotional roller coaster family caregivers ride.
The TMLAAA came into being soon after President Lyndon Johnson signed the Older Americans Act (OAA) into law in 1965. It is funded by the State through a partnership with Washington’s Department of Social and Health Services (DSHS) and the Aging and Long Term Support Administration (ALTSA). It receives funding from the OAA through Medicaid and Medicare and the Administration for Community Living. One county commissioner from each of the 3 counties makes up its policy board.
TMLAAA works with community organizations and governmental agencies to offer a large variety of services that support individuals, families and caregivers. These include Medicaid case management, nutrition programs, support groups, education, long term care advocacy, transportation help, and referrals for home care providers and long term care facilities. It also provides an extensive directory of community resources .
Lessons from Powerful Tools for Caregivers
Lesson #1 – We don’t control what life dishes out to us.
A devastating diagnosis, no matter what someone’s age, always comes as a shock. Suddenly, the control you thought you had over your life is gone. But we can choose to react with acceptance, deal with difficult emotions, and set realistic expectations and goals.
Lesson #2 – You have to take care of yourself to be able to take care of someone else.
A major focus of the course was learning how to recognize and manage the stress that comes from being a caregiver. Instead of self-criticism, choosing to perceive and respond positively and making a plan to include time for pleasurable activities helps reduce stress.
Lesson #3 – It matters how you say something.
How do you talk to a spouse who doesn’t even remember who you are, or a disabled mother who’s upset that you’re treating her like a child?
By aligning yourself to really feel the person’s emotional state and needs and then finding areas of agreement, you can redirect and resolve difficult emotional situations with compassion, not confrontation and control.
How do you talk to a sibling who is not helping in caregiving duties for an aging parent or an aging parent making impossible demands ? In these cases, it’s best to be direct and speak calmly- to describe the problem, how it makes you feel, what you think needs to be done and what will happen as a consequence.
These ways of communicating with respect and concern for the other would be welcome in all areas of life.
Lesson #4 – “Bad” emotions can be powerful teachers.
After nights of little sleep and unending caregiving tasks, it’s no surprise you may sometimes react with anger followed by guilt and/or depression. The flip side is that once out in the open, you can examine these emotions more deeply, finding the human frailties we all share and resolve to do better.
Lesson #5 – There’s a process for making difficult decisions.
Difficult decisions are inevitable when dealing with serious illness and end of life issues. Having a process that identifies the problem, gathers information that generates options to create a plan that you can then implement and evaluate lends clarity and direction when dealing with serious emotionally charged critical issues.
At the end of the 6 week class, it was agreed that the greatest help came from listening to each other’s stories and offering suggestions and support.
The State of Caregiving in Washington and the United States
In 2023, the American Association of Retired Persons (AARP) report, Valuing the Invaluable, estimated there were 820,000 family caregivers in Washington State providing 770 million hours of unpaid family care valued at $16.8 billion. Out-of-pocket caregiving costs average 44% of the annual income of these caregivers.
By 2034, it estimates that adults aged 65 and older will outnumber children under the age of 18 for the first time, creating an even larger need for caregivers. It is expected that between 2022 and 2032, 8.9 million direct care jobs will need to be filled, though only 860,000 jobs are projected to be added. Now in Washington alone, more than 11,000 people are waiting for Medicaid Home&Community Services, often for 3 years. That figure climbs to 710,739 nationwide. In fact, care jobs are expected to be one of the fastest growing jobs in the next decade. It’s not the kind of job that can be done robotically or online.
Care work is essential work, because it makes all other work possible.
But it is completely undervalued in our society. 37% of home care workers live in or near poverty, earning an average hourly wage of $16.72. Of course, in Washington wages are higher, around $25 an hour, but so are costs, and caseworkers struggle to make ends meet.
This physically and emotionally demanding work often comes with heavy workloads, limited training and career advancement prospects, and scheduling challenges. Similarly, childcare workers earn a mean hourly wage of $13.42 and rank amongst the 5 lowest paying jobs in the country.
The National Domestic Workers Alliance is a social movement organization working to win respect, recognition and labor rights and protections for nearly 2.5 million nannies, housecleaners and homecare workers. It advocates for increased investment in Home and Community-Based Services and childcare programs and for improved working conditions and economic security for domestic workers. It is affiliated with labor groups, many of them immigrant communities, and works to connect and organize workers to change policy.
So what does it say about our society when those who care for our most precious and most vulnerable are short changed and have to fight just to make a decent living? Can we imagine a society where caregiving and caregivers, both paid and unpaid, are respected and supported so families can focus on their loved one without the anxiety of material lack?
Lessons from Caregivers
Good caregivers share similar qualities. They are patient, empathetic, and kind.
They annul their own desires to care for someone else. They listen and speak with compassion. And though the work is demanding, there is a great benefit in it. Through acts of caring, we can go beyond our own desires to include those of another, expanding our emotional life and appreciation of life’s blessings.
In this world based on “every man for himself,” caring for another human being allows us to experience a different reality where we exist for each other. And that is perhaps the greatest lesson.
Esther Kronenberg is a family caregiver and frequent contributor to WIP
Caregiving Resources
Alzheimer’s and Dementia
https://www.alz.org/help-support/caregiving/stages-behaviors
https://teepasnow.com – offers great advice on how to interact with people with dementia
Thurston County Medical Equipment Bank:
2704 Pacific Ave SE, Olympia, WA 98501 (this is the new address)
360-456-8810
https://medicalequipmentbank.org/
Finding an Adult Family Home:
Adult Family Home Locator: https://fortress.wa.gov/dshs/adsaapps/lookup/AFHPubLookup.aspx
Adult Family Home Council: https://adultfamilyhomecouncil.org/home-finder
Brighter Days Adult Day Program: https://www.southsoundseniors.org/supportive-services/brighter-days-program
Provides activities for people with demential in a social setting while offering caregivers respite time
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