Getting The Last Chapter Right

4/5/25 

An All Day Forum

“Let’s leave a legacy instead of a mess”

These were the notes taken down during the forum. Click here to watch the video.

A collection of wisdom and opinions by the panelists in the afternoon session, responding to questions from the audience. 

HOUSING:

The waiting list for senior or subsidized housing is up to eight years. In addition, there has been in increase in the Mendocino County Planning and Building Department red-tag program. People who have lived in their dwellings for decades are being “red tagged” if neighbors or others report they are not “up to code.” The Grassroots Institute has a housing committee looking into the unfair practices that are forcing vulnerable seniors from stable housing for minor infractions. There have been attempts to discuss “Co-Housing” which is an international movement for those who have extra space in their homes, on their property, and would like to have others living with them or nearby. 

FOOD SCARCITY:

The current threats and actual cuts to programs for the Food Bank and the Senior Center are catastrophic. $250K is the food budget for the senior center. They are trying to keep the truly needy provided, but they need volunteers to serve at lunch and to deliver Meals On Wheels. With tariffs and other costs added to food, people will go hungry or be forced to eat unhealthfully. These are all issues to be discussed at community-level: food co-ops, gardens? 

IN HOME SUPPORT SERVICES (IHSS) is a county funded program, eligibility is for those who qualify for MediCAL. This is more available standard than we often believe, so it’s worth finding out if you qualify. Your home, vehicle and investments are (currently) not considered, just your income. There is now the threat for not-legal providers of IHSS to be deported, or afraid to apply. This is a major loss, and the threat is real. There is already a shortage of caregivers, and people in outlying areas often cannot find someone who will come long distances. 

The RIGHT TO A DIGNIFIED DEATH:

The qualifications are similar to hospice, less than six months to live, but the focus is more on quality of life and level suffering. It’s important to keep up with medical needs, and to visit your providers regularly to avoid decline and seek early intervention to avoid suffering. Mark Apfel, MD at Anderson Valley makes it a mission to be present at the death of those he prescribes the medication, even travels to Fort Bragg or wherever. Dr. Zoe Berna is also a prescribing physician, and have good education about choices, timing, no pressure. 

HOSPICE:

The program is limited to about 12 patients at a time, due to lack of nursing. They have funds, but desperately need one more nurse for the coast. There currently 10 home health patients on the HOSPICE waiting list. There are NO volunteers (no reason given), nor is PT or Occupational Therapy included. A social worker, chaplain and hospice medical director are offered with Hospice Medicare Benefit (you do not need to be on Medicare to qualify).

FUNERAL INFO:

Seth Ferguson at Chapel By the Sea is open to having any discussion about these issues. He explained that the Mendocino Coast allows burial at sea, “The greenest form of dealing with our remains,” because 7 miles out the shelf drops to 1600 feet (c.  $7,000). He can also drive remains to WA state, where there is composting, but it’s not great for the environment to drive that far. In 2027 there will be composting in California, but there is nobody providing it yet. Other choices have to do with no chemicals, wicker baskets and cremation in appropriate cardboard boxes (Maggie Watson knows about these; they are not currently available at Chapel by the Sea or Eversole in Ukiah, but is legal if found). Pre-paying for funeral expenses (buying the insurance for this) locks in the price. It also is transferrable nationally but NOT internationally (transporting is possible, expensive). There is a payment plan possibility. If you cannot afford funeral expenses, the county has to take the responsibility. BUT, the family cannot receive the ashes, and takes over 30 days to activate, which is very uncomfortable for the family. We on the coast can only offer skin grafting for “donor” due to the length of time it takes for transportation of vital organs. 

IMPORTANT PAPERS:

NOK-BOX (Next of Kin filing box) is a product that is available on line and helps to organize all the papers needed in case of death in one place. Even when we “Get it Right” the location of funeral insurance, life insurance, passwords, trusts/wills, DNR, POLST can be scattered about the house. Pulling it together in one location, and then telling trusted people where you have it is a “do it once and done” project that will have your family grateful to you.

COMMUNITY MODEL:

Dr. Apfel said that Anderson Valley has embraced “The Village” as a model, a form of “mutual aid” where people are able to reach out for both offer the basic services required to live at home (paid and volunteer) or request needs (transportation, yardwork, safety rails). People can share grocery shopping lists, transport to medical appointments, discussion of personal problems and seeking advice or support. 

COMMUNITY CENTERS:

Some communities have better emergency preparedness, and “phone trees” where they each other for whatever reason to spread the word, be it a party or a disaster. Comptche, Elk are trying to stress that need. Anderson Valley is working with a “village” concept. We have lost some of the connections even in our tiny population centers (Albion, Westport, Cleone, Comptche, Elk) where we all knew each other, could find each other. In Mendo and Fort Bragg, populations change more invisibly. Now we do not often know our neighbors, what their phone numbers are in case of emergency, or for them to know we wish to know if they are at risk, or have needs. We have had granges and volunteer fire departments over the years, where people gathered for events, fund raising, training. But we’ve lost the “centers” to gather in many of our communities.   

MANY WAYS TO GET INVOLVED, MAKE A DIFFERENCE:

Maggie and Debra both stressed that leaving some portion of your inheritance to non-profits or other beneficial services, faith-based, or individual grants will make a bigger impact than we can imagine on those in need. Getting more involved on boards and committees, picking a topic that is meaningful and put time and resources to support it will make you feel more involved, purposeful. 

TECHNOLOGY/SCAMS:

From health care to financial information, the level of complexity required has become nearly impossible for those without full bandwidth, computer, texting, cell phones. Trying to reach a bank or doctor’s office is almost impossible merely by landline. Susan Quinn has helped many to navigate this, “Come into my office in Gualala and I’ll help you!” Who else can do this? Senior Center? It’s a real question… people are paying off scammers out of fear of losing social security, utilities, etc. It’s almost impossible to correct a mistake with IRS, etc. 

MEDICAL INSURANCE:

Another area of confusion and complexity. Who can help people find out of they have the right (and ability) to appeal a denial? Getting help from a clinic or doctor’s office isn’t easy. And if someone ends up at the ER, and is NOT SAFE to return to home? This has to be insisted that it is an UNSAFE DISCHARGE. Then the hospital has to keep the person until issue is resolved or a bed in a rehab can be found. It’s expensive for the hospitals who cannot recoup the funds. It is not due to lack of compassion or concern by the medical community, but the insurance companies need to be held accountable. Another area of protest that is begging for a outcry. 

HOLISTIC HEALTH:

There are so many ways to become healthy, maintain well-being: chiropractor, bodywork, acupuncture, music, nutrition. But they are seldom covered by insurance and end up costing the taxpayers in unnecessary ER visits or serious outcomes due to lack of prevention. 

BOOKS:

There were dozens of books on various tables in the break out room. But one that was highlighted at the end of the day was ELDERHOOD by Louise Aronson, a UCSF professor on aging (Pulitzer finalist). It argues that the end of life has become “medicalized” and needs to be reframed as one of wisdom and service, not just about dying more every day.