People today between the ages of 50 and 70 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 parents who are living longer. Baby boomers have become, by necessity, important health care decision makers, and sometimes an added responsibility might arrive in the blink of an eye.
For example, Marilyn knew that something had changed dramatically with her mother when she arrived one morning to find her sitting on the floor in the kitchen. Until that moment, her mom had seemed increasingly frail, but still independent. At age 86, she still ironed her pillowcases and prepared meals for herself in the house she had lived in for 40 years. That morning, things seemed different and scary for both of them.
“What happened?” asked Marilyn, as she tried to check her mother’s arms and legs for broken bones.
“I don’t know. Do you know where we are?” her mother replied as she gazed up at Marilyn 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.
A sudden event like this and the experiences that follow may mark the tricky passage in which a parent will need a different setting which is safer and more appropriate for diminishing cognitive and physical status. Marilyn is now in charge and may not have a game plan. For most people, it’s a bit like being told that there is buried treasure that must be found, but the map is missing.
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.
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 people 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 experiencing vertigo, it may not be safe for them to try to reach the bathroom by themselves.
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 like work or childcare. You will have plenty to do with the overall surveillance of 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. 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, allowing the resident to remain under the same “roof” (as long as they are able to continue to pay privately) until the end of life.
Anticipate both increased care needs and decreased financial resources. Is it possible that your loved one might outlive her savings and need long-term care? Skilled nursing homes are covered by private funds, Medicare and/or Medicaid (welfare). Medicare is limited to 60 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 and 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 all transfers of funds in the most recent five years). Skilled nursing facilities may be the best option if dementia is worsening and assistance is needed with eating, drinking, toileting, bathing and walking.
Investigate all possibilities. Speak to friends and coworkers about their experience. Choose the best option with your loved one (if they are able to participate in the choice).
Start with the “sniff test” if you are visiting potential health care facilities. Yes, smell counts. What is your reaction to the odor of the place? If you have any questions 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 access from and to the outside. Skilled nursing facilities are the only places that are required by law to have a certain ratio of staff to residents. Private facilities which do not participate in state or federal funding have no set requirement for staffing.
Observe who the other residents are and how they are dressed. Will your parent feel at home with these people? If it is an assisted living facility, find out how much care and supervision is provided 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 status and evaluation 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, and hopefully allow you to breathe easier and feel less “sandwiched-in.”
Ruth W. Crocker, Ph.D is an author, writing consultant and expert on recovery from trauma and personal tragedy. She is Writer-In-Residence at Riverlight Wellness Center in Stonington, Conn., where she teaches the art of writing memoir and personal stories.