In Palo Alto, we have a perfect storm on the horizon as the population ages and the cost of living continues to increase.
Palo Alto has one of the most rapidly aging populations in Santa Clara County. There are more adults turning 65 years old and living way past 85 than ever before. The Public Policy Institute of California has predicted that our state's elders will grow by 4 million by 2030. Thus, more of us will need care and more of us will become family caregivers.
In Palo Alto, many older adults can't — or will not be able to — afford the high cost of private home care, assisted living and health insurance co-pays for emergency room stays, ambulance transports, dental work, prescriptions ... The list goes on. And those who are house rich but cash poor will not be able afford to live or die in the place they have called home for more than 40 years.
I recently consulted with a staff member at a local suicide hot line who has worked the evening shift for more than 10 years. He confirms that he is receiving calls now from older adults who have suicidal thoughts due to the rising costs of rentals, the lack of affordable senior housing and difficulties accessing health care.
Family caregivers also face critical financial, emotional and physical health risks.
The Centers for Disease Control designates older family caregivers as an at-risk subgroup. They are at risk for social isolation, stroke, heart disease, autoimmune disorders, chronic pain and crippling anxiety.
My Palo Alto caregiver group members recently took a stress survey. Several members within our groups stated that they feel cut off from friends, fatigued, do not sleep well, have not had respite in months and feel scared about their financial futures.
One family caregiver, an adult daughter in her 60s, described her life as a "living hell." She is driving daily between two different households to assist frail, elderly relatives. One relative has had a series of strokes and is incontinent, and the other relative has diabetes and memory loss. She is on a medication regimen that includes 20 pills.
While there are some local efforts taking place to address the growing needs of our rapidly expanding aging population and their stressed family caregivers, there is no coordinated federal, state, county and city "master plan."
The city of Palo Alto, Avenidas and the Alzheimer's Association have partnered to create an Age Friendly and Dementia a Friendly City Initiative. Last March, 150 Palo Alto residents met with a panel of elder care providers to learn about dementia signs and symptoms and strategies for coping with challenging behaviors.
At Stanford University Hospital, medical professionals recently attended a seminar over a period of many months to bring hospital administrative staff in dialogue with quality-assurance staff and health providers to examine the gaps in care for frail elders.
For things to improve for family caregivers, we need a coordinated system and "road map" linking the entire region's elder care community and medical care networks.
I am suggesting that we conduct a new survey and or census on the issues that impact older family caregivers who reside in Palo Alto and Santa Clara County.
We need to know how many of you now 65-plus are care giving for a frail older loved one, a disabled adult child, grandchildren or perhaps some combined version in your household. How much of your budget is going toward the care of a loved one? Where do you obtain your health care? Are your urgent care needs met? What type of services do you need? Is there a delay for health care services? Were you instructed of your Medicare patient rights?
I am told by my caregiver group members that there are significant delays for scheduling a comprehensive cognitive status exam with a neurologist and for a first-home visit with a palliative care team. Most of my clients have had difficult experiences with a rushed discharge from a skilled facility or have not received Medicare policies forms required during the hospital admissions process and prior to discharge.
Until we have a master plan, learn to take control of what you can, when you can. Voice your concerns.
And finally, know your patient's rights:
— Become familiar with the Social Security and Medicare website Medicare.gov. If you are the legal decision maker for an incapacitated loved one, you have the right to file a Medicare appeal and or grievance concerning payment costs, prescription changes, discharge plans from a hospital, nursing home or home health service.
— Contact Medicare with any questions at 800-633-4227, or call 800-434-0222 to discuss your concerns with staff at the California Health Insurance Counseling Advocacy Program.
— Purchase a caregiver ID tag which states, "I am a caregiver. If I am found down, please call this number."
— Have a team meeting with relatives, neighbors and friends: Delegate tasks; try to arrange for time-off coverage; and in case of an emergency, back-up support.
— Join a caregiver support group.
— If you are having thoughts of suicide, go to your local emergency room or call the suicide hotline at 800-273-8255.
Paula Wolfson, LCSW, manager of Avenidas Care Partners, provides elder care consultations, counseling, crisis intervention, and emotional support to older adults and their significant others. She can be reached at firstname.lastname@example.org.