More than 15 million people serve as unpaid and untrained caregivers for older adults. A study found that this “invisible” workforce spends almost 30 hours a week providing care for their family members and it adds up to an estimated $400 billion worth of annual unpaid time. That’s a lot of time and money.
It’s a problem in our country. The problem is not so much that adult children don’t want to care for their parents, they do. It’s just that caring for your parents can equate to a second full-time job, and it often leaves these adults at an increased risk of developing depression, and having greater physical and financial difficulties, much of which has to do with a loss of job productivity when so much time is spent caregiving.
Most people do expect to have to act as a family caregiver for their parents at some point in their lives, but today the primary caregiver is getting younger. This is called an “off-time event,” when something that would be considered a normal experience occurs at an abnormal time. Nearly 15% of people providing care for family members are between the ages of 20 and 44. Generation home care is a challenge at any age, but it might be even more difficult and disruptive at a younger age. In the younger age group, becoming a caregiver has a negative impact on the pursuit of education. In the older half of the age group, caregiving impacts work life. People often have to reduce time at work, forgo promotions, and maybe even resign, due to the pressures they face when caring for their parents.
Generation Homecare: A Sandwich Generation
There is also the ‘Sandwich Generation.’ The Sandwich Generation consists of people who are caring for children at home as well as their parents, their children and parents are dependent at the same time.
Rising to the Challenge
Younger caregivers in particular often find themselves isolated and have difficulty connecting with their peers. While most of their peers are driving children to school and soccer practice, caregivers are managing doctor’s appointments and visits to the hospital. A packed schedule makes finding time to socialize difficult and less of a priority. Though a younger caregiver may find support in other caregivers, it is likely that these caregivers are older and at a different stage in their life, making it difficult to connect and find a shared grievance.
Gina Rinehart had to give up her job at age 46 to become a caregiver for her father with lung cancer. While she had trouble connecting with the older caregivers, she was able to find support via social media. She found a weekly Twitter chat (#LCSM) to be a great place to connect with people going through a similar struggle.
It’s important to find people to confide in. Knowing that other people share your struggle but also your passion for caring for your parents. People who are not in similar situations might not understand why you would uproot your life to take care of someone, but in support groups people like Ms. Rinehart found a safe space to release anger and release stress. Finding a place to feel supported is an important way to manage your own mental health as a caregiver.
Where is the Support? Resolutions to the Challenge
When it comes to caregiving, one of the biggest questions is how will we manage financially? Because caregiving can lead to less hours at work, loss of opportunity for promotions, or even eventually resignation in order to become a full-time caregiver, families often struggle with managing finances.
As people are living longer and often prefer to remain in their homes, communities, or close to family, the need for caregivers is greatly rising. And people want the care at home, not in a nursing home or assisted living facility. A few states across the country are beginning to recognize this struggle and are implementing programs that will allow people to remain at home for as long as possible, with their children acting as caregivers.
In Hawaii, there is the Kupuna Caregivers Act, which provides some relief for caregivers by paying them stipends of up to $70 per day. The program has some restrictions, it is limited to those who work at least 30 hours per week. The intended use of the money is for caregiving supplies, as a supplement for lost wages or to hire outside help.
Outside of Hawaii, the issue becomes more complicated. Previously relied on private long-term care insurance is a declining industry and is very expensive and medicare offers a few options for low-income families. Otherwise, thus far Maine and Washington have stepped up to create similar programs to Hawaii. In Washington, the Long-Term Care Trust Act was enacted to provide universal long-term care across the state. The program would provide $100 a day to support caregivers. Maine is working on a ballot legislation for universal home care which would make home caregiving available for people over 65 or those with disabilities.
The programs are intended to provide financial relief for families who want to be able to provide for their parents but must also consider the financial repercussions. The programs can also serve as models for other states that will (hopefully) implement similar programs in the future.
Mental relief is also an important issue when it comes to caregiving. Caregivers, like Ms. Rinehart who we wrote about above, often face social isolation, especially those who are caregivers to someone with Atlzheimers or other forms of dementia. Going out in public with dementia can be frightening to others, and a challenge to the caregiver. So by choice or out of necessity, they become socially isolated as they often choose to stay at home instead, or as friends and family members distance themselves. But isolation and loneliness can be detrimental to one’s mental and physical health. Programs like the Alzheimer’s Disease and Related Dementias Family Support Program have been adopted across the country to combat the isolation and loneliness that comes with caregiving. The programs involve counseling sessions, support groups, and phone access to counselors as needed. Having the support of counselors and knowing that people out there understand what you are going through and that it’s okay to need help leads to less stress and depression, better health for the caregiver and the cared for, and delayed nursing-home admissions. Programs like these have been implemented under different names across the country and Area Agencies on Aging can help caregivers find free local programs. Programs like these differ from finding support online. Online groups are helpful for airing grievances and speaking with people who are struggling in similar ways, but these programs can be more beneficial when searching for medical advice as well as support.
For the Caregiver and Caretaker
Many caregivers do truly love and want to be there for their parents, extending the same care they received years ago. Perhaps live in home care comes at a less than ideal time, but nothing in life can truly be planned for. Caregivers are often satisfied with their ability to reciprocate the care and sacrifice their parents made for them as children, and they feel pride when they do a good job. Caring for a loved one should not be a source of stress and depression, but rather a natural stage of life. To combat the negativity that comes with being a caregiver, particularly at a young age, there should be more sources of support for the caregiver, and states are beginning to step in and provide programs that offer support. If you have a friend who acts as a caregiver, don’t forget about them. The importance of continued friendship and the ability to socialize outside of the world of medications and hospitals is vital to the mental health of your friends.