Unpaid caregiving is a critical issue affecting families across the United States, particularly those caring for loved ones with dementia.
Currently, approximately one in ten Americans is living with dementia, and experts predict that by 2050, this number will increase to one in five.
The emotional and financial burden on caregivers can be immense, as many of them provide care without compensation.
Diane Chew, a caregiver from Pennsylvania, exemplifies the challenges faced by many in this situation.
Her husband, Ben, a musician diagnosed with dementia, requires constant care, turning caregiving into a full-time job for her without any income.
With the costs associated with caregiving skyrocketing, Chew is facing ongoing financial challenges, paying upwards of $15,000 each month for her husband’s care.
“I honestly thought I was bleeding money,” Chew remarked, highlighting the emotional and financial strain of the situation.
The expenses include essential items like disposable briefs, which Chew says they go through at an alarming rate.
In order to make ends meet, Chew has had to sell Ben’s recording studio equipment and beloved guitar collection, with the possibility of having to sell their home looming over her.
Despite having some retirement savings, Chew finds herself in a difficult position where her resources are too substantial for government assistance but insufficient to cover the high costs of caregiving.
A recent study conducted by Otsuka Pharmaceuticals shows that caregiving stresses American families greatly, revealing that caregivers in Pennsylvania provide $32.5 billion worth of care annually, with 40% of this care dedicated to individuals living with dementia.
When questioned about her financial future, Chew honestly expressed, “Maybe another year, quite honestly,” regarding how long she can sustain her current situation.
While some caregivers in Pennsylvania can receive payments to care for family members, the beneficiaries must qualify for Medicaid, which many working families may not have access to.
”I highly urge caregivers to explore early and often what’s possible for them,” Chew suggested, emphasizing the importance of reaching out to local Departments of Aging and support groups for assistance.
She also encourages connecting with an elder care attorney who can help with future planning.
Moreover, Chew stresses the necessity of building a support team before the need arises.
As families navigate the emotional complexities of caregiving, talking with loved ones about plans as soon as signs of dementia appear is critical.
Chew believes it’s essential to embrace love over fear in the caregiving journey.
“Do not let fear take them down, because it can threaten to do that every day,” she advised, underscoring that caregivers can choose between fear or love.
From her perspective, Ben’s love inspires her to choose positivity, even amid adversity.
For caregivers looking for legal guidance, resources can be found through the National Academy of Elder Law Attorneys website.
In addition to individual support, legislative efforts in Pennsylvania aim to alleviate some of the pressures on caregivers.
One pending bill looks to expand Medicaid coverage to include assisted living and memory care facilities, while two others seek to enhance the long-term care workforce in the state.
Residents of Philadelphia can also seek help from the city’s Corporation for Aging, which offers resources to support both caregivers and care recipients.
The journey of caregiving is not only an emotional one but a significant financial undertaking for many families, highlighting the urgent need for systemic solutions and community support.
image source from：6abc
