Tears well up into Bill Pelter’s eyes talking about his parents and how much he worried about them: “You can have a sense of it from the outside, but until it is your family, you really don’t how it feels.  It cuts you to the bone. You can’t shake it from your mind, wondering if today the day that they will fall or have an accident.”

Bill’s aging mother was caring for his aging father as his health declined and his body got frailer, needing more and more help with activities of daily living such as bathing, dressing and getting in and out of bed.  Bill worried about his parents because his father was nearly twice the size of his petite mother. Her strength and balance was not up to the task of providing her husband with all of the support he needed … yet she was unwilling to accept her children’s offers to help and hire professional homecare providers.

“Knowing as much as I do about our frayed system for Long-term Supports and Services (which includes Long-term Care or homecare), meant that I couldn’t help but be worried about them and what would happen if either of them got hurt,” says Bill.  

And sure enough, his worries came true when one day, while walking together, they both lost their balance and fell.  The fall fractured Bill’s mom’s wrist, and she could no longer support her husband. His father was admitted into a veterans long term care facility and spent the last six months of his life there. Bill’s mother relocated closer to his sister and lives in a senior apartment complex.  

Just a year after moving, Bill’s mother began needing assistance with her ADLs. Even though Bill’s father was veteran of WWII and Korea, it took his mother four years and the help of an advocate to win approval for the spousal benefits to which she’s entitled. The VA now covers her in-home care costs. Today she in 94 and living a happily in her own apartment, near her daughter and grandchildren. Without in-home assistance, she would be in a nursing home.

In many ways Bill’s parents were fortunate: they had savings and three children who could contribute from their incomes to piece together their father’s homecare.

Homecare for one individual, paying out of pocket, can cost $20-30/hour for a personal care attendant. Someone paying $22/hour would spend $32,000 for four hours of assistance seven days per week. Most individuals and families aren’t so lucky. The vast majority of senior or disabled Californians who need some kind of assistance with daily activities don’t qualify for Medi-Cal covered homecare, and Long-term Care Insurance is prohibitively expensive for most of us.  

Individuals and families, more and more, are spending down their savings and selling off assets until they have little enough money left that they qualify for Medi-Cal, or are making difficult choices between food, medication, and paying for homecare just so they can stay in their homes. Many people assume that Medicare will cover homecare and find out too late to adequately save for Long-term Supports and Services related costs.

Bill’s family isn’t unusual in that his parents relied on one another for support for as long as they could before employing someone to help them.  There are an estimated 38.9 million unpaid family caregivers in the U.S., and of those, 85% are family members—spouses, siblings, parents—and 7% are over the age of 75, themselves nearing the age of needing support in the home.*

The statistics are alarming and can be overwhelming … the high and rising cost of homecare, the growing population of seniors and people with disabilities that need or will need some kind of supports with activities of daily living to live with independence in their home, and the relative shortage of available homecare attendants to meet the need.

The good news is that there is a powerful and growing effort underway to address this need! Together, we can turn this “crisis” into an opportunity to transform the system of LTSS/LTC so that all Californians get the support they need to live and age with dignity (and to ensure that the jobs for homecare workers are good jobs with benefits).

The California Aging and Disability Alliance (CADA) – representing organizations of seniors, people with disabilities and homecare workers – has come together around a vision of a world where everyone can live and age with dignity.  We are working together to create a road map to fund an LTSS program that would help Californians who do not currently qualify for Medi-Cal services afford the homecare they need to live with dignity. Our vision would include infusing more funds into the LTSS system, which we believe will result in hundreds if not thousands more fair paying homecare jobs.  

This year, in 2019, we are gathering the data and doing the research needed to plan out such a program.

One of the most important steps in this process is educating ourselves and our policy makers about the issue and how it impacts people like Bill, his parents and his siblings.  The best way to do this is through storytelling.  

What is your story?  And would you be willing to share it with us and with policymakers so that we can learn from it?

  • Are you a senior or person with a disability that needs support at home but doesn’t qualify for IHSS (Medi-Cal) and struggles to afford it?  
  • Are you an unpaid family caregiver that is putting in countless hours without breaks or supports for your own health?  

If so, please reach out!  Fill out this form or email lindsay@domesticemployers.org. If you are excited about our vision for a world where everyone can live and age with dignity, with the supports to live in our homes and communities, and where all workers are treated fairly, join us in our efforts to educate and inform decision-makers in Sacramento.  Let us know you want to join this campaign for dignified homecare.

 

We extend our appreciation to Bill for sharing his story, and to his parents and to all of the millions of people who everyday work to support themselves or support another person.

 

* Caregiving in the U.S. Executive Summary, June 2015 Research Report by the American Association of Retired Americans.

One thought on “Family caregiving at home is great, until it isn’t

  1. I am 60 years old and my husband just left me. I don’t have children and am living alone.

    I will be needing the support when the time comes. I have taken cares of my in-laws when they were alive and before they went to an assisted living facility. I am now taking care is my mom who is 96.

    I hope I don’t have to live long so I won’t need to be cared for but it’s not up to me to predict that.

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