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Are adult diapers covered? Depends…pun intended. If it’s assisted living—no. If it’s a skilled nursing facility (nursing home/SNF)—yes. That’s just one example of a surprise that you discover when you become a caregiver. Mary Abbey was surprised on a regular basis after she became a caregiver for her parents. She was determined to help others avoid similar experiences.
Unexpected Caregiver
Her first shock was becoming a “sudden-onset” caregiver. If your parent/spouse/other loved one has a stroke or accident, you often become a caregiver unexpectedly. If they have a long-term progressive illness, caregiving may build over time, and sometimes people are not surprised to be in the caregiving role. Even if one is not surprised to be a caregiver and even feels prepared, they may be surprised by the amount of time it takes just for logistics. Abbey was a long-distance caregiver. She had management skills, knew her parents had long-term care insurance, and, therefore, felt confident entering this new phase with her parents. However, she was surprised by the amount of time it took to arrange services long-distance. She wishes she’d had a headset for her phone so she could have taken notes during conversations and worked on her computer while on hold. The amount of time she spent on hold was a big surprise! If she could leave a message, there was more time spent waiting for a return call. Once services were started, her ability to follow up on how things were working out was limited by the long-distance role.
Unexpected Costs of Caregiving
When it became clear that her mother would require 24-hour unskilled care, Abbey was glad to discover that an assisted living facility would be less expensive than a nursing home. Assuming everything would be provided in an assisted living situation, she was quickly surprised to find out that the base price quoted for assisted living was just the rent for the room, meals and some assistance with activities of daily living (dressing, toileting, supervision for safety, etc.). All other services were added on top of that—help with medication, laundry, elective housekeeping services, more than 2 baths or showers a week. In addition, personal care items, like those adult continence supplies, are the responsibility of family members. Often those services and items are included at a nursing home. At either location you would still need to pay for personal items like haircuts, favorite foods, bird feeders, etc.
Unexpected Housing Costs of Caregiving
Changing living situation may be a temporary decision at first. As Abbey found out, when the decision becomes permanent, the costs do not automatically settle down. If a house must be sold, the mortgage, utility and yard maintenance payments continue until the house is actually sold. If the caregiver is in another state, like Abbey was, there are continued travel costs while preparing the home for sale, etc. This is when caregivers often move their loved ones closer to themselves to ease the burden of visits and monitoring care. Moving—another expense.
Indirect Costs of Caregiving
Abbey emphasizes the cost of time, energy and knowledge. Often a caregiver’s ability to work full-time may suffer. There is just not enough time to work and coordinate or provide care. With this stress, comes the strain on the caregiver’s energy—for work, caregiving and self-care. Then there is the piece of re-inventing the wheel. Often caregivers do not know where to turn or do not have money or time to investigate the help available. Care managers can be invaluable in helping caregivers figure out what services are needed and then knowing the pool of the best providers for those services in your specific situation and geographic area. Wise use of care managers’ time and services can be cost-effective, but often it is difficult to even know how to begin the process to find a qualified care manager.
Overwhelmed just by thinking about this? Don’t be. Contact Mary Abbey before you discover other caregiving surprises. She can be reached at mmabbey@aol.com.
If you have other little known caregiving tips to share, please use the comment section!
