10 panelists covered the topic of dementia from a professional point of view
Welcome by Cynthia Wall, President of Friends of Health with FOH Board members:
Ann Conner, Bruce Philp, Ellen Campbell, LVN, Emily Inwood, Fiduciary, Gin Kremen, DDS, Mary Flannery-Kraut, RN, and Nancy Gardner-Grmeiner
We welcomed 65 Community & Professionals. 10 Panelists.
“From our very tiny window, Friends of Health has seen the need to bring this topic front and center. It’s more important to provide information to our tiny, rural, spaced-out communities. Our goal today is summed up by “Getting Dementia out of the Shadows.” Our greatest fear is no longer speaking in public, it’s losing our minds, and control of our lives. For partners and family, the fear is doubled. When shame and fear feed denial, it leads to waiting too long. I felt a bit of panic when I realized we had invited TEN people on a panel. But this is the range of expertise that is required in coping with cognitive decline. Many of you are just starting this unwanted terrifying journey. The message today? You do not have to face it alone, there is help to untangle legal, ethical, medical, self-care and financial issues when we can no longer manage to care of ourselves or loved ones alone at home.”
LIST OF PANELISTS and their PREFERRED CONTACT INFORMATION:
Barbara Lindquist, facilitator for the Caregivers Group barbaral@mcn.org
Susan Quinn, LCSW, patient care management 707.888.3969
Teresa Baumeister, APS social worker baumeistert@mendocinocounty.gov 707.962.1102
Jim Jackson, Attorney jackson@mcn.org 707.962.0222
Maggie Watson, Lic. Fiduciary maggie@mendocinofiduciary.com 707.397.1655
Ithaca Moore, LCSW Home health/Hospice social worker mooreif@ah.org 707.459.1818
William Miller, MD, Chief Medical Officer, Adventist Health Mendocino Coast 707.961.4644
Jill Rexrode, Director of Redwood Coast Senior Services. Direct line: 707.961.4317
Monika Rosicka, Redwood Caregiver Services mxr@redwoodcrc.org 707.542.0282 ext. 104
Betty Lacy, MD Keynote Speaker bettylacymd@gmail.com
KEYNOTE HIGHLIGHTS:
Betty Lacy, MD, psychiatrist who is a “brain coach”: “I want to be the first woman in my family in four generations that doesn’t get Alzheimer’s. I believe we can prevent or slow down the onset of many of the dementias by early detection, treatment, and lifestyle changes.” http://www.brainbodyhealth.org
There are new tests for early detection with simple blood tests.
New meds hold some promise
New theories about causes beyond on amyloid plaque, about the cause of Alzheimer’s: Viruses, forever chemicals, plastic, diminished brain stimulation (too much screen time)etc. being explored.
Other ailments, injuries, will produce cognitive decline: diagnosis and treatment early essential
Suggested tests on her website Includes APOE-4 gene www.brainbodyhealth.org
www.empowerdxlab.com is a place you can do it for yourself and take to your MDLook up the term “Diabetes 3” and learn more about prevention and treatment.
S.L.E.D.S. Betty’s acronym for what can help
Sensory (hearing, eyes checked, aided) keeping the bran active with reading, puzzle, study
Lab work: new tests for Alzheimer’s. Cholesterol, female hormones, etc. Monitor for diabetes.
Exercise! Aerobic as well as stretching, movement, dance
Diet: low carb, fewer processed, pre-prepared foods, pro-biotic fermented foods; lots more of the rainbow fruits and veggies, healthy proteins that don’t contribute to cholesterol.
Lots more “S’s”: spirituality/creativity, sex, support from others, socializing…
HIGHLIGHTS OF PANELISTS’ COMMENTS BOTH AM/PM
Barbara Lindquist, facilitator of the Caregivers’ support group
We meet every 2nd and fourth Tuesday from 3:00 to 5:00 in Mendocino, in person. We have 17 on the mailing list and Anyone with a loved one who is experiencing cognitive decline of any kind, at any level is welcome. Sharing stories, laughing and crying, caregivers and resources, shared experiences invaluable commonality of experience, despite the depth or kind of disease process of their loved ones.
Teresa Baumeister, Social worker for Mendo County Adult Protective Services
We have unique problems here on the coast. We cover from North of Westport to Gualala, and there are only two social workers, me and Chela Ruano. We make home visits, assess the situation, and make referral from there. Problems in substandard housing, which were not a problem in youth, are now making it impossible to stay at home: not insulated, on bad roads far from services, not having gone to the doctor in years, poverty came from self-sufficiency, and the denial of how bad the health and safety problems make referrals difficult. Many people came here to escape family, corporate life, and capitalist values. They now have insufficient funds, a lack of family and friends/neighbors are often in the same sinking boat. We need the community to step up and be aware of needs of elderly especially those with dementia. There are not easy solutions: 7 years waiting list for senior housing, waiting list for meals on wheels, even if people qualify for IHSS, getting workers to drive long distances for little money is unlikely. Sad and scary times.
Susan Quinn, MSW, patient care management in Gualala
She is a social worker, and worked in dementia care. She loves going into the homes and doing assessments from the ground up, able to see what they cannot in terms of future needs, referring to Occupational and Physical Therapists, communication with physicians, taking people to specialists and helping to translate the chaos of modern medical separation of specialties. Available for advice and support, to assess if her level of skill is needed. So many forms, so little time: she showed pink copies of the POLST. If someone has been in the hospital, and they are pushing for a discharge when there is no one adequate to care for them at home, claim, honestly, that it is an UNSAFE DISCHARGE. Insist that they will be in danger if released, and longer care at the hospital, or placement elsewhere is required. Remember, 120 days of nursing care (it has to be a medical necessity) is all that Medicare will cover. But it this allows you time to plan for next steps, get more care in the home, or find a placement for the end of life, those 4 months are precious. Susan Quinn said to contact her if you need a “script.” Be ready to advocate for the POLST agreements: ER docs and hospitalists may not read them or be willing to comply without your insistence.
If you are a Veteran, contact your local agency ASAP. They may have support services, payment for disabled veterans’ caregivers, hospital or other resources. Find out what they can do for you NOW.
Compassion and Choices statement of value and requests for those with dementia.
All agreed: You need to have an emergency plan and a “GO KIT” ready for emergencies.
This includes: a list of all medications (it’s a nightmare if you don’t). A fact sheet that includes a photo of the patient, family. Details of their lives, hobbies, family members, where they live, what they did for a living. Amps up empathy for RNs. A copy of ALL the DNR/AID/POLST documents. A favorite lap blanket or a photograph of loved ones for bedside.
Ithaca Moore, LCSW: AH Home Health and Hospice Social worker, volunteer coordinator
We are dedicated to getting a full crew to serve the coast. Down one nurse, and just now hiring extra social workers, this has been an exhausting and rewarding time getting the Hospice Medicare Benefit up and running. “It is a myth that only a doctor can refer when someone is down to 6 months or less of life expectancy. You yourself, or a family or friend, can ask for a nurse assessment, and we’ll start the process to see if you qualify for home health or hospice.” They recognize that it’s been five years since a real hospice program has been operational on the coast, and want to get it done, ethically. “If you know of any nurses who want to work with us, PLEASE direct them to us!” Hospice is back on the coast. Ithaca Moore, LCSW and Dede Tracy, BSW. Haley Shannon, RN is the assessment nurse for Home Health and Hospice. ANYONE who is struggling at any level in caring for someone in the home can call (707)459-1818 and request a nursing visit.
William Miller, MD, Chief Medical Officer, Adventist Health Mendocino Coast Hospital and internal medicine hospitalist.
Started with a study from CalPoly Humboldt: Mendocino County is #1 in older adults who live alone. He described the difficulties facing hospitals and skilled nursing facilities (SNF). Medicare reimbursement does NOT cover nursing homes over long term. And the need for skilled nursing. The inability to perform Activities of Daily Living (bathing, eating, disorientation, judgment of safety) make living at home unsafe, but doesn’t qualify for SNF. Medicare doesn’t cover basic memory units for example. Legislation has hampered both reimbursement rates and medication issues (shared separately) making transferring between acute care hospitals and long term residences more difficult. He explained why SNF’s must have at least 2/3 of their population be rehab or 120 max stays in order to even break even. ERs are the entry point for dementia patients due to injuries, falls, strokes, other events. From there it is a long-term stay in the hospital to stabilize them. Frequently, patients are placed in SNFs in Ukiah or Willits, but can be as far away as Fresno and Bakersfield Unfortunately, this may mean that an elderly spouse may have difficulty visiting them, which makes them resistant to place despite danger for them both. He stated unequivocally, echoed by everyone on the panel, that Medicare Advantage is neither Medicare nor an advantage, but means turning over ones Medicare to a for-profit managed care insurance company that may lead to less services being available, not more.
Jill Rexrode, Director of Redwood Coast Senior Services
Four programs for people who are cognitively in decline or simply aging and needing support due to grief, isolation, and loneliness. All free, but donations appreciated.
The Friendly Visitor Program is designed to make new friends.
Senior Peer Counseling provides in-home counseling for elders age 60+ on the north coast.
Meals on Wheels delivers hot meals 3 days a week; frozen dinners available for other days.
Alzheimer's Day Program The program offers activities to stimulate memory retention and provides fun activities such as art projects, exercise, movies and more! A delicious lunch is provided. Program days and times are Monday through Thursday from 10AM to 2PM.
Maggie Watson, Licensed Fiduciary
A fiduciary acts on your behalf to carry out your wishes listed in your estate plan. A fiduciary can act as a trustee, executor, conservator, agent on a Healthcare power of attorney as well as a financial poser of attorney. We also act as rep payees, and trustees on Special Needs Trusts and do bill pay. Fiduciaries work with doctors, lawyers, real estate agents, financial advisors, CPA, etc. It was suggested to put together an estate plan with an attorney and review it regularly. If a person becomes incapacitated and their power of attorney document requires a letter from a medical provider, here is language for the doctor to use in creating a letter on their stationary for the person who will be authorized to take over: “(Name of person) has been under my care. They are no longer able to manage their financial, personal and health care decisions. Their power of attorney (name of person if there is one) should take over the care of my patient.” Possible immediate measures: Put someone you trust (power of attorney you specified) on your checking account to pay bills and provide for you if you are unable to sign checks. See about getting on MediCal if possible. There is NO asset limit as of January of 2024. It’s worth finding out. She seconded Susan’s suggestions for POLST and Advanced Directives to be reviewed together. If there is a conflict, the doctor will go with the most effort to save you from the “the Big D”… If your doctor argues with you, and refuses to SIGN POLST, find a new doctor to do it. Forms and information re POLST: www.polst.org or https://emsa.ca.gov/wp-content/uploads/sites/71/2017/07/POLSTForm.2017rv2.pdf
Jim Jackson, Attorney
Get your financial affairs in order before you have to. A simple trust isn’t expensive, especially important to start while there is still cognitive awareness of preferences, for financial and medical. You can download documents from the internet to start assembling your Last Will & Testament. A trust is further protection that your wishes will be honored, and you can name your executor. If you do all the preparation and take it to an attorney, it isn’t all that expensive, compared to the nightmare of costs and taxes and lost control. If you do NOT have a trust, and are on Medi-CAL, California law allows them to take assets to reimburse their fund, including your house, if you utilize their services. He suggested that if you haven’t looked at your trust in the last five years, go over it carefully, and post-it note any changes (people die, favorites fade) and then take it to an attorney to be updated legally.
Monika Rosicka, Coord. & Nancy Powers Stone, Ex. Director, of Redwood Caregiver Services
They both stressed how much they wanted our coast community of caregivers to know how much RCS wants to increase services to clients. They serve 7 counties, northwest California. Mendocino is so spread out, and loneliness and isolation are not helpful. Providing respite care and zoom support groups (in Spanish as well as English, Monica and a doctor with RCS are bi-lingual), “Our clients are the caregivers, NOT the patient,” and looking for what their needs are is there focus. They will be offering a 2 Saturday training in September/October to help caregivers identify their needs, and seek resources of all kinds. She is Monica’s supervisor, and encourages us to call her to ask what RCS might be able to do for you before the caregiver is exhausted. Up to 50% of caregivers for long term dementia patients become seriously ill or die before their loved ones.
NOTE RE Medicare/Medi-CAL assessment: After the event, Cynthia did research, and spoke with licensed local insurance broker, Brenda Barrett fortbraggnotary@gmail.com. She is a reliable resource to explore options to getting off Advantage Plans. She does not charge for her services, receives a commission from the insurance company only if someone buys a new policy. There are several entry points/time frames for changing Medicare plans “It’s confusing.” She is willing to talk with you about your situation, to see if you can find a policy that better suits your needs.
This is the note Brenda sent when I asked for permission to give her information out on this list:
Dear Cynthia, You and the panel are right: The Healthcare system is 💔 broken.
There is a definite flaw in the system. There are only 2 types of Medicare Supplement type plans, 1.
Medicare Supplement 2. Medicare Advantage
Medicare Supplement is in addition to Medicare, Picks up where Medicare leaves off. It allows hospital stays up to 365 additional days. Skilled Nursing up to 101 days, patients’ pay after that.
Medicare Advantage takes the place of Medicare. Covers what Medicare benefits plus additional Benefits such as hearing and Vision. The DisAdvantage? The providers are limited here.
Medi-Cal: Some individuals self-insure by building a savings over the years while employed, or rely on MediCal state subsidy because their income has become nonexistent.
At home care would be individual’s expense. Which is extremely expensive to have someone assist even 3 to 4 hours a day. I get a lot of Individuals using (IHSS) In Home Supportive Services but again your income must be at a minimum to qualify. They have to spend down their income by purchasing a Insurance policy such as Medicare Supplement or dental to qualify for IHSS
Skilled Nursing facilities are getting overcrowded and expensive. Possible placement within 100 Miles as listed on the Medicare website.
COMMUNITY BRAINSTORMING IN THE AFTERNOON: These are the requests and suggestions that came up after the 2nd round of the panel. Thank you to the audience for ideas.
1. We need more private care: small population homes, affordable and more non-nursing care.
2. We need an updated list of care homes that are licensed, with access for coast (inland as well?). Jill will make sure a current list is on their website https://www.rcscenter.org
3. Can we repurpose the old hospice volunteer list? Not restricted to just Medicare benefit patients, but what agency can manage this?
4. Noted that Urinary Tract Infections are dangerous, often symptomless. It contributes to confusion even death. Jill recommended D-Mannose as a preventative a pill with cranberry & Dandelion, available at Harvest or on line.
5. Books recommended by panel:
A Better Way to Die
Being Mortal Atul Gwande
When Breath Becomes Air
36 Hour Day: book and workbook for caregivers of dementia
A Graceful Farewell: Putting Your Affairs in Order
The Art of Dying Well & Knocking on Heaven’s Door: the path to a better way of death Katy Butler
6. Having personal care in the home would help: who does it?
Pedicures, which are helpful for reducing fall risk. We need a pedicurist who is experienced with elderly, licensed for in-home care. Ideas???
Hair cuts & Bathing become fights at times: who can do this safely for your loved ones?
MOBILE Health care needed! Here are two, Cynthia called to be sure:
Dental hygienist: Jennifer de’Lavigne RDHAP 707-962-8044 comes to the home
Lab draws: $30 blood draw, taken to the lab: Pam Holmes (707)813-7666 call or text
Medicare supposed start a patient navigator program (soon?). What will this mean?
FINAL PLEA!!! Agencies and neighbors need volunteers:
Senior Center can’t operate without people to support, guide, and provide back up for dementia patients.
Volunteering for Hospice is also on the table. Friends of Health hopes to support getting this aspect by providing the names of previous volunteers who can get refreshed and ready to roll.
The idea of students, both High School and College aged, who could be trained as respite and friendly helpers, maybe get school credits? Who can handle this program? Needs vetting, training, supervision.
If you’d like to know more about helping support and promote Friends of Hospice on the Northern Mendocino Coast contact us www.friendsofhealthmendocino.org