“Each generation supposes that the world was simpler for the one before it.” Eleanor Roosevelt
What Mrs. Roosevelt says is true, but life has unquestionably become more complicated for one age group today. People between the ages of forty-five and seventy are often referred to as the “sandwich” generation because of their dual roles as helpers to their own children and grandchildren, and also as caregivers for their aging parents who are living longer. Baby boomers have become, by necessity, important health care decision makers on both ends of the spectrum, from child care to elder care. Sometimes even more responsibility can arrive in the blink of an eye: What do you do if there is a sudden change in your parent’s health status? One minute they seem to be holding their own and the next minute – disaster.
My friend Marilyn knew that something had changed dramatically with her mother when she arrived one morning to find mom sitting on the floor in the kitchen. Until that moment, her mother had seemed increasingly frail, but still independent. At age 86 she still ironed her pillowcases and prepared her own meals in the house she had lived in for forty years. That morning life seemed different and scary for both of them.
“What happened,” asked Marilyn as she tried to check for broken bones.
“I don’t know. Do you know where we are?” Her mother gazed up from the floor with a faraway look.
A trip to the emergency room revealed nothing unusual according to lab tests, but Marilyn realized that her mother’s ability to live on her own had changed.
This sudden event marked their entry into the tricky passage towards total dependence in which her mother would need a different setting more appropriate for her diminishing cognitive and physical status. Marilyn became abruptly in charge and she didn’t have a game plan. For most people it’s a bit like learning that buried treasure must be found, but the map is missing and the terrain is challenging.
Here are some clues and pointers that have helped others to find their way in this difficult territory:
- Start with a complete medical evaluation including both medical and cognitive status. Local visiting nurse associations can often refer you to a qualified gerontologist. The goal of such an evaluation is to assess present needs and abilities regarding safety and self-care, and potential future needs. Fragile aging people continue to decline. They don’t “get better” unless they have something treatable like a urinary tract infection or a fracture.
- Determine the signs that rule out living alone. There are options available for assistance if your loved one can stay in their own home, such as home health aides or others who can provide homemaking services. The key is whether or not your parent can be left alone for any part of the day or night. If they are weak or have lost balance, they may not be safe to try to reach the bathroom by themselves, especially at night.
- Assess your other responsibilities and time demands carefully. Don’t convince yourself that you can “go it alone” and care for your parent along with meeting other demands such as work or childcare for your grandchildren. You will have plenty to do with the overall surveillance of the care even if it is provided in the home by helpers.
- Consider the next level of care that might be soon approaching, especially if your parent has the financial resources to allow purchasing or renting an apartment where services are provided. Independent Living (a townhouse or apartment in a complex with other residents over age 55) requires the ability to do all activities of daily living without assistance: washing, dressing, getting to the dining room for meals, taking medication. Residents usually have facilities for preparing some or all of their meals. The main benefit of Independent Living complexes are planned social activities and transportation for shopping and/or church, They may also be connected to an assisted living facility and a dementia unit, enabling the resident to remain under the same “roof” (as long as they are able to continue to pay with their own funds) to the end of life.
- Anticipate both increased care needs and decreased financial resources. Is it possible that your loved one might outlive their savings and also need long-term care? Skilled nursing homes are paid by three sources, depending on the situation: private funds, Medicare and Medicaid (welfare). Medicare is limited to sixty days of care after an approved hospital stay of at least “three midnights” as long as the resident continues to make progress and improve. Medicaid (welfare/public assistance) coverage begins when a resident has depleted their own personal funds and after they have been approved by application to the state in which they reside. There is no difference in the care received after the transition from private to public funds in a skilled nursing facility. The nursing staff does not know which patients are paying privately and which are on state assistance. The most common misconception about nursing home expenses is that the children of the resident must continue to pay privately after their parent runs out of money. This is never the case (although the state will examine financial records very carefully looking at bank accounts and all transfers of funds in the most recent five years). A skilled nursing facility may be the best option if dementia is worsening and assistance is needed with eating, drinking, toileting, bathing and/or walking.
- Investigate all possibilities. Speak to friends and coworkers about their experience. Choose the best situation with your loved one (if they are able to participate in the choice).
- Start with the “sniff test” if you are visiting potential facilities and residencies. Yes. Smell counts. What is your reaction to the odor of the place? If you have any concerns about the source of the aroma, go somewhere else. Ask questions about security including the number of staff available at all times of the day and night, and access from and to the outside. Skilled nursing facilities (commonly called “nursing homes”) are the only places that are required by law to have a certain ratio of staff to residents. Facilities that do not participate in state or federal funding have no set requirement for staffing, meal service or medical care.
- Observe who the other residents are and how they are dressed. What kinds of things are they doing in common areas? Are they reading, writing or having conversations? Will your parent feel at home with these people? If it is an assisted living facility, find out how much care and supervision is included in the basic monthly fee and if additional care needs are provided at an extra cost. Some places charge extra for administering medication and helping a resident to the bathroom. Skilled Nursing
Homes provide all services within the daily charge and are subject to state and federal regulations. You can look up the rating status and most recent inspection of any licensed facility on www.medicare.gov.
Understanding the specific needs of your loved one in the present and anticipating changes in the future will help you make informed, compassionate choices – with and for them. This will hopefully allow you to breathe easier as a caregiver and feel less “sandwiched-in.”