Caregivers often underestimate the time and resources needed in becoming caregivers to elderly parents and grandparents.
When Janet first became a caregiver, her parents lived independently. Janet ran errands and took her mother shopping. Both of them enjoyed the outings, and it did not feel like a burden to Janet.
Over time, Janet’s responsibilities increased as her parents became more frail. Her caregiving responsibilities began to affect her work, her family and even her health. She cut back hours and travel for work so she could care for her parents. The stress of being the primary caregiver led to Janet developing health issues.
Why do so many caregivers underestimate the time commitment to caregiving?
Because caregiving can be a stealth activity. It often starts out slowly, as in Janet’s case with running errands or helping with physical chores. And with time it can lead to more responsibility and obligations… which to some caregivers can seem never-ending.
Caregivers also often underestimate the length of time they will need to be caregivers.
When an illness strikes an elderly parent or grandparent, recovery may be slower than expected or it can lead to other problems. Or other problems just seem to follow. One study showed that caregivers initially often underestimate the length of caregiving time by at least half. A caregiver expecting to give care for one or two years may often spent four years or more giving care.
And the estimated time per week also was often underestimated. This can vary from week to week, and often increases with time. So a caregiver spending two hours a week may end up spending much more time.
The impact caregiving has on work and income is also often underestimated. Caregiving responsibilities can mean cutting back work hours or missing important training and travel for work. This can lead to a loss of income both in the short term and long term.
In 1999, one study showed the average loss of lifetime wealth for caregiver including income, pension and social security benefits was $659,000. In 2013 dollars this is $890,000 – 1,060,000!
Caregiving can also lead to a loss in opportunities. If a caregiver decides to leave the workplace even for a short time, she may find it difficult to resume her career. She may find her savings and retirement including Social Security benefits also are affected.
Where can you get help balancing the costs and responsibilities of becoming caregivers to elderly parents?
- Get as much information as you can about your parents’ health and the likely progression of their diseases. Ask specific questions about how much time you will need to spend in giving care. And make decisions with help from your medical, financial and legal experts. They can also help you find additional sources of help.
Online sources may also be of help. AARP has a wealth of information in their Caregiver Resource Center. And specific sites such as Alzheimer’s Association often have a special section for caregiver tips and information specific to their disease. You may also find help at government agencies like your local Office of Aging.
- Get help for your family and support system. Ask for help and get it before you become frustrated or ill. You may be able to get help with small things like errands or chores or bigger things like sharing caregiving responsibilities. Everyone needs breaks from caregiving. Both daily breaks and longer vacations or respites.
And whenever possible, include them in the decision-making process.
- Talk to your supervisor. If you’re in school, talk to your advisor or TA. Let them know about your caregiving responsibilities and see what options are available to you. Telecommuting for example may be an option, as are flexible hours or job-sharing.
- Consider community programs. Adult day care, respite care and caregiver support groups in your community or online can be of service.
- Keep alert to changing needs – yours, your family’s and your parents or grandparents. With time, the caregiving needs and responsibilities often change. Usually they increase with time, although sometimes the caregiving is temporary. Decisions made a year ago may need revision.
Balancing the responsibilities and costs of becoming caregivers to elderly parents starts with recognizing the problem, including awareness of the future possibilities.
So what’s the first step in caregiving?
Being a caregiver to elderly parents is different than being a daughter or a son. The first step is stepping into the role of caregiver.
When Janet recognized she was no longer “just” a daughter, she became an effective caregiver.
And she’s right.
A is for accepting and acknowledging you are a caregiver. And this “A” is the first one in “A HEART PLAN” because it IS so important to effective caregiving. “A HEART PLAN” gives you a road map for going from barely surviving to thriving in caregiving.
To your thriving in caregiving,
Ina Gilmore, M.D. (Retired)
“The Knitting Dr.”
Founder, www.CaregivingWithPurpose.com and www.TheKnittingYarn.com
Ambassador of Elder Care at www.HowToLiveOnPurpose.com