The Balancing Act of Caregiving
Updated: Sep 10
The life of my good friend Larry took a turn when his younger brother, Paul, fractured his spine in an auto accident. Paul suffered facial lacerations, broken bones, and a mild spinal cord injury.
His recovery was slow.
His additional symptoms of physically acting out his dreams by yelling and flailing, plus occasional episodes of visual hallucinations, led his medical team to diagnose Paul with Lewy body dementia.
At age 58 this was a devastating diagnosis.
Larry and Paul had gone through tough times before. In their early 20’s they turned their lives around by joining Alcoholics Anonymous (AA). To reinforce their 12-step program they practiced karate, eventually earning brown belts.
Now they had a new challenge in front of them.
How could Larry support Paul, without diminishing his own retirement savings or risking his management job?
Larry called on friends to donate time and materials to help make Paul’s small home accessible with ramps, grab bars and a roll-in shower. Larry’s wife, Maggie, pulled together a team of women who shopped, cooked, and did light housework for Paul.
Fortunately, the hospital team referred Paul to PACE (Program of All-inclusive Care for the Elderly) a program that helps people remain in their homes and receive the care and services they need, rather than going into a nursing home or other care facility. Services include primary medical care, nursing, physical therapy, daycare, health-related transportation and social services.
Through PACE, Larry, Maggie, and Paul discovered a wide range of local resources. This allowed Larry to keep his job and provided help with the financial strain.
These days, on Sunday evenings Paul and Larry visit while sipping tea, a practice cultivated many years before.
They talk openly of their struggles.
Larry shares his frustrations at work and his goal of working five years longer before retirement. Paul shares his stories of his physical challenges and life at the PACE daycare center.
They both talk honestly about finances.
They never forget to share their delights and gratitude for the gifts in their lives. Paul now offers a short meditation class at the center for other dementia patients. Larry appreciates his job that allows him flexible time to be a caregiver for Paul.
They end each evening together reminding each other, “What did Mr. Miyagi say”?
“Go and find your balance.”
(In case you're either too young or too old to remember, Mr. Miyagi is an iconic character from the classic 1980's film, The Karate Kid.)
A tea ceremony is a very simple ritual that brings you into the present moment.
Tips for Keeping Finances in Check
One of the many benefits to caregiving is being able to provide personal care and attention so your loved one's quality of life is the best it can be. A common drawback is the financial strain it can cause due to care expenses, the inability to work or unexpected spending from your loved one.
Practical ways to help minimize financial burdens:
• Create a budget and have your own long-term financial plan.
• Check eligibility for public benefits such as Medicaid and the Home- and Community-based Services (HCBS). Apply for VA benefits if applicable
• Get financial documents in place including any insurance policies, pension records, and savings. Include an inventory of your loved one’s assets and debts.
• Check for a long-term insurance care plan and coverage for caregiving or in-home services expenses.
• Check if your workplace offers flexible or reduced hours so you can keep your job. Ask about paid leave for caregivers. (It’s a thing now.)
• Obtain your loved one’s passwords connected to online accounts so you can monitor purchases to avoid overspending and scam artists.
• If your loved one or other family members have financial stability, consider asking them to help with expenses or even pay you for your services.
• Look for tax incentives with the IRS for a list of eligible deductions.
• Check for free and discounted local senior resources.
So, make yourself a cup of tea and allow yourself the space and time to do some research. You might be amazed at how much financial support is at your fingertips.