“The term dignity of risk originally came from the disability community. They also came up with the phrase ‘nothing about us without us.’ It’s really about inclusivity. And having more of what we call an asset-based approach to care. There was often a very patronizing view of seniors.” said Jody Gastfriend, Author, Senior Care Expert & Consultant.
We spin ourselves into knots caring for our kids until they’re more independent. Then our parents often become less so. And we start this delicate dance, to try and assess their health, as they age. ‘Do you remember saying that Mom? What are all of these medications for?’ Because there’s no normal when it comes to aging, we don’t know where to step in.
And even if the long-term care process wasn’t complicated, expensive, and emotional, most of us would still dread it. Because it’s terrifying to see our parents need more support. But what if there’s a better way? One that frees you up, reduces the stress and improves your relationship? Jody suggests we look for help. And start with our parents. “Look at what their strengths and capabilities are as opposed to their deficits. When we think about it that way, it does shift things.”
How to Partner with your Parents
Jody explained, “We want to be thought of as a community of people with strengths, assets and needs just like anybody else. So, approach people who are aging with ‘what do you want?’ as opposed to, ‘you need to do this.’ And there are frameworks now to help make these choices . So, we don’t need to jump to institutional care.” She explained that the four M’s begin with aligning on what matters most to the person receiving the care. “And then it goes into identifying mentation (mental health) medication and mobility needs. Which are the pillars for how someone can function in a certain setting or not.” Beautiful!
Okay, What if Your Parents Don’t Want Your Help?
Jody explained, “One of the biggest challenges for caregivers is helping a parent who is not receptive to your help. And then people often reach an impasse, which creates enormous stress! Because I have literally talked hundreds of people through this. And they feel like, ‘if Mom or Dad is not doing this, then they’re going to fall or something bad is going to happen and I’m going to be responsible. So, I have to get them to say yes, otherwise they’re in danger.’ And the parent is like, ‘hey I’ve been making my own decisions for 89 years. I don’t need my kid at age 55 to think he knows better than me.’” It also strains the relationship.
She added, “So, if caregivers can balance that need, for both self-determination and autonomy, on their loved one’s side. And safety, to a point which is reasonable, then they can align on boundaries about what they can or can’t do.” In My Parent’s Keeper, she explains this part of her journey in depth, while caring for her father with dementia. She said, “If they can’t be in charge, you may need to become legally in charge. But in most situations, they can collaborate, coach and support. So, you are not the enforcer in many cases, you are the supporter.“
Value Their Dignity Not Only Their Safety
“The senior care communities used to market mostly to the adult children, and it was fear based. Seniors would go on these tours, and they would have this great engagement with the adult child. And then the seniors would say, ‘I don’t think so.’ So, there’s been a paradigm shift. And many of them are now marketing directly to seniors. And it’s not fear based. Its wellness based, community based and it’s about engagement,” Jody said. Amen.
She added, “And that is much more appealing to people as they age. Who wants to just go sit in a place that you’re safe all day? That sounds like fun, right? No one wants that.” Jody shared that her perspective on this has changed, now that her kids are adults. “Don’t talk about people as they age, as these frail, limited, declining entities that need to be protected. And it’s not that we don’t need protection and safety but speak to my spirit.” How can you think about what’s desirable and viable for your parents?
Assess the Needs And Available Resources
Jody explained “A lot of it depends on what is practical, as well as what the person wants. If someone needs 24/7 care that’s expensive. Can you afford it? Are there programs that can help? Sometimes people are eligible for programs, like Medicaid and Medicare that might fund that so, they don’t have to be cared for in an institution.”
Jody emphasizes that we review all of the factors. And consider seeking outside expertise, “What are their care needs? What family members are around, available and can help support that decision? Is the home where that person lives safe? And if not, what are the modifications needed? There’s a checklist of things you can go through.”
And Explore Community-Based Solutions
Jody explained, “When I ran a geriatric planning department, Medicaid would pay for nursing homes but not home care. So, there was an institutional bias against aging in the community. And now there’s a recognition that people should be able to be cared for, if possible, in the community or setting of their choice.” Many families scrambled to find new elder care alternatives during Covid’s peak. When once trusted institutions, like hospitals and nursing facilities, were at greater risk for outbreaks. Jody explained that ideally, as adult children, we are not making all of the decisions.
Consider Enlisting Experts
She explained, “There are nationwide resources through the area agencies on aging, the AAA’s that provide free assistance, consultation and guidance. If you’re caring for someone with dementia, the Alzheimer’s Association has a hotline with free information. Caregiving Action Network also has free care information. And then there are care managers, through the aging life care association. They’re not free but they’re usually worth their weight in gold. They work directly with seniors, form a relationship with them and become the eyes, ears and put resources in place. And they can work with adult children as well around how to approach a caregiving challenge.” Jody admits the interconnected systems, like healthcare and insurance, are cumbersome to navigate. She added, “So, if you know where to go, it’s helpful.”
And Ask Your Employer About Supports
Jody explained, “There are resources out there. And one of the challenges is that if you Google this stuff, you’re going to end up on a lot of websites that are trying to sell you something. So, it’s worth getting the information from credible and objective sources of support.”
She said, “If you are a working caregiver, many companies are waking up to the reality that they need to put supports in place. And sometimes there are consultations and other resources available that the employers provide.” We worked together in the care industry before. And many larger Employers now offer access to or subsidize senior care planning. And legal support for long term planning. In addition to the flexible and dependent care spending accounts to offset costs.
Embrace the Journey (With Less Guilt)
Jody shared that guilt is the constant companion for caregivers. She said, “You know from being a working Mom, we always feel like not we’re doing our jobs within all of these concentric circles. It would have been helpful for me, when I was going through it for someone to acknowledge, that you’re going to feel guilt. And it’s okay to feel that way. And you should talk about it. Because if someone says, ‘don’t feel guilty’ then you’re going to feel guilty about feeling guilty.” So true! She smiled and said, “Acknowledge that guilt has a seat at the table. But it doesn’t have the loudest voice. There are other voices.”
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Many thanks to the talented Jody Gastfriend!
About Jody Gastfriend :
As a licensed clinical social worker with over 30 years of experience in senior care, Jody knows the challenges of family caregivers, having helped manage the care of her own father with dementia for more than a decade.
Jody has held a wide range of leadership positions including Director of Social Service in a community hospital, Chief Operating Officer of a home care agency, and consultant to health care organizations, educational institutions and employers. A featured senior care expert for NBC News, Fox News, AARPand The Wall St Journal, Jody has been a contributor to The Huffington Post’s Huff/Post50 section and is an expert opinion writer for Forbes.com. In addition, Jody has published numerous articles about caregiving and aging in outlets such as Oprah.com, Salon.com, Next Avenue and the Harvard Business Review.
Jody’s book, “My Parent’s Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving,”published by Yale University Press, is an essential guide to caring for aging and ailing family members.Tags: caring for aging parents, elder care, family caregivers, long term care planning, managing stress as a family caregiver, senior care, working family caregivers