“Feel Empowered while Caregiving” Webinar on Tuesday, Sep 19 2017

Feel Empowered while Caregiving by Janet Edmunson, M.Ed.

This announcement is from Janet Edmunson:

Join us for a FREE Webinar on Tuesday September 19, 2017: 4:00 PM – 5:00 PM PDT

For family and professional caregiver.

Webinar will be approximately 30 minutes in length.

Register online today by clicking the link below.


Webinar Description: Most of us feel powerless and seem to be just surviving our caregiving experience. But no matter what our situation is, we can still find more happiness and strength. In this webinar, we’ll explore how to actually feel empowered, instead of deflated. We’ll look at the choices and control we still have. We’ll explore how to get the appreciation we need as well as how to boost our own spirits. Join us to receive the infusion of energy you deserve for this caregiver journey.

About Janet: Janet has over 30 years’ experience in the health promotion field. She retired in May 2007 as Director of the Prevention & Wellness for a staff of 20 at Blue Cross Blue Shield of Massachusetts. Since retirement, as President of JME Insights, she is a motivational speaker, consultant and trainer, having spoken to hundreds of groups across the U.S. While working full-time, Janet took care of her husband, Charles, during the five years he fought a movement disorder with dementia. Janet wrote about her experience in her book, Finding Meaning with Charles. Janet has a Master’s degree from Georgia State University. For more information about Janet, see her website at www.AffirmYourself.com.

“Managing Advanced Parkinson’s” – Professional Caregiver Training Notes

There was a training program called TULIPS, designed for professional caregivers (such as nurses in nursing homes) who have clients with Parkinson’s Disease. The program is being revised and is no longer available. But we located an old copy.

Brain Support Network volunteer Denise Dagan recently looked over the TULIPS training for “Managing Advanced Parkinson’s Disease” as the diseases in our community are more similar to advanced PD than early or middle-stage PD.

Here are Denise’s notes from the training. Interspersed in brackets are a few comments from Denise, whose father had Lewy Body Dementia.


Denise’s Notes from

Managing Advanced Parkinson’s Disease
TULIPS: training for better Parkinson’s care
Struthers Parkinson’s Center, Minneapolis, MN


Section 1 – Planning Ahead

Create back up plans for what to do:
– if you have an urgent errand
– if you need home maintenance or repair
– if you become ill
– if your loved one becomes ill
– if you both become ill.

[This is the question we posed to my Mom, “What if you wake up with the flu and can’t help Dad with anything, even for just one day?” She didn’t have an answer and that allowed us to move forward with hiring in-home care.]


Section 2 – Acknowledging Changing Roles and Relationships

– Maintain intimacy through touch, conversation, shared times and humor.
– When communicating becomes difficult for both speaker and listener, set up hand signals or other gestures to reply to yes/no questions.
– A speech-language pathologist may provide additional suggestions to enhance communication.


Section 3 – Deciding Where to Live

Remaining in Your Own Home:
– Will a ramp be needed for outside access?
– Do floor surfaces easily accommodate wheelchair transport?
– Are the bedroom and bathroom accessible?
[Have an occupational therapist perform a home assessment and make suggestions about accessibility and safety.]
– Attractive bins or baskets will disguise needed equipment while maintaining appealing surroundings.

Moving to a New Home:
– Consider both present and potential needs, including help with meal preparation, medication set-up, personal care and/or complex medical management. Find out how much these services cost [either in-home or if you are researching a facility].
– Investigate facilities, comparing services and prices, available staffing assistance and experience with caring for those with Parkinson’s disease.

Creating Comfortable Surroundings:
Wherever you live your surroundings should be comfortable, functional, and relaxing. Nobody wants to spend time in an institution
– Consider a pleasing fragrance.
– Include meaningful objects, mementos, achievements, photographs or family, friends, vacations, pets, etc.
– Bring nature indoors for those who cannot go outdoors frequently. Plant a garden or hang a bird feeder where they are easily viewed.
– Play favorite music to set a mood and facilitate conversation.
– Use soft fabrics and blankets to appeal to the touch.
– Connect through a warm soak, followed by a hand and/or foot massage.


Section 4 – Caregiver Self Care

– Learn proper techniques to prevent injury during caregiving responsibilities. [Especially to protect your back.]
– Write dates you need respite support on a calendar and ask those who offer help to “sign up” for one or more of these dates.
– Learn about respite care options through family, friends, neighbors, friends, faith communities or other community services. Investigate adult day programs, respite volunteer programs, or facilities that offer short-term stays in the event of caregiver vacation, illness, or need for time away. Network with other caregivers or visit with a local social worker or senior services agency to identify available options.
– Avoid negative people and unrealistic expectations.


Section 5 – Assisting Movement

Someone with Parkinson’s disease may require assistance at one time of day, while being independent another time. Offer assistance as needed. Consider making an appointment with a physical or occupational therapist who can offer proper training for caregivers, suggest appropriate aids and instructions for use, and make referrals to additional community resources.

– Before starting to move, a gentle rocking or rolling motion will help stiff muscles to relax. Avoid quick, pulling, or jerking movements.
– Offer hand-over-hand assistance as needed.
– A transfer belt around the waist provides the caregiver with a firm grasp and added stability when assisting with walking or transfers.
– Coordinate efforts by arranging a signal (i.e. “1-2-3 stand”) when working together. Count slowly and give adequate time to respond.
– Transfer “pivot discs” may be appropriate for those who have difficulty turning feet when moving from chair to bed or toilet. Visit a therapist for instruction on proper use.
– Mechanical lifts may be used for those unable to bear their own weight during transfers.
– Limit conversations when moving to allow greater focus on walking or transfers.
– Use color contrast when choosing equipment (i.e. install a white grab bar on a dark colored wall) for potential vision changes.


Section 6 – Providing Mealtime Assistance

– Avoid tough, dry, or crumbly textures.
– Small, more frequent meals may be better for those with low blood pressure, fatigue, or who note feeling full quickly.
– Alternate between liquids and solids at mealtime.
– Allow adequate time for chewing and swallowing.
– Offer ice chips or lemon ice to aid swallowing.
– Give medications in applesauce to make swallowing pills easier.
– Do not feed, offer fluids or give medications when someone is lying down.
– Raise height of tray or plate to make eating easier, especially for those with neck immobility or vision changes.
– Consult a speech-language pathologist if coughing, choking, or recurrent lung infections occur.
– Feeding tubes may be considered for those with severe problems, but should be carefully considered with the individual, family and the health care team.


Section 7 – Dental Care

– Use an antiseptic mouthwash twice daily to decrease plaque and kill bacteria.
– Use an electric toothbrush and toothpaste.
– Dairy products and sugary foods may increase drooling.


Section 8 – Toileting

Bladder Changes:
– Stay well hydrated.
– Allow plenty of time to use the toilet.
– Work with a physical or occupational therapist to learn ways to help the person with Parkinson’s transfer to the toilet and avoid injury.
– A pad placed inside an incontinence brief adds extra absorbency.
– Use disposable or washable pads on the bed to protect the mattress and reduce laundry.
– Use a urinal (available for both men and women) bedpan, or bedside commode to reduce bathroom trips at night.
– Condom catheters are a user-friendly solution for urgency, frequency, and incontinence.
– Indwelling catheters may be placed in those with more significant bladder problems. Ask your doctor.

Managing Constipation:
Try these steps and contact your nurse or doctor if bowel movements do not occur at least every 3 days.
– Increase fiber and fluids.
– Try more regular activity (position changes and/or exercise).
– Use over-the-counter stool softeners, as needed.


Section 9 – Skin Care

As persons with Parkinson’s disease age, their skin may become fragile and prone to break down. Suggestions to help prevent pressure sores and infection include:
– Change position every two hours.
– Massage lotion into the skin to prevent dryness and improve circulation.
– Be observant for redness, blisters, or open sores. Report skin changes promptly to prevent a more serious problem.
– Plastic coating and tapes from incontinence products can cause irritation. Avoid contact with the skin.
– Use heel/elbow protectors for added skin protection.
– If in a wheelchair, obtain a cushion to lessen the risk of getting a pressure sore.

When bathing:
– Make sure skin folds are thoroughly washed and dried.
– Consider a sponge bath for those with limited mobility or unsafe transfers to the tub or shower.
– A home health aide can offer bathing assistance if this task becomes too difficult or time consuming for a family caregiver.

When in bed:
– Change clothing or bed linens more frequently if increased sweating is a problem
– Use an “egg crate” or alternating pressure mattress to help prevent skin pressure when in bed.


Section 10 – If Someone Falls

– Work with a physical therapist to learn safe and proper techniques to help someone get up from a fall.
– Do not hurry to get up. First, check for injuries. Some people need to rest before attempting to rise.
– If the person who fell is unable to get up, make him/her as comfortable as possible until help arrives.
– If able, scoot to a heavy piece of stable furniture, then move onto hands and knees before attempting to get up.
– Consider using knee or elbow [or head?] protectors for those having frequent falls.
– Consider special clothing with added cushion over hip joints.
– Create a “back up” plan for assistance with rising. Do you have a cell phone, medical alert system, family member or neighbor?


Section 11 – Thinking changes

Not all people with Parkinson’s disease develop severe thinking changes, which can include increased forgetfulness, confusion, compulsive behaviors, paranoia, anxiety, or personality changes. Promptly report any new or sudden changes in thinking or behavior to your health care team. Medications may need adjusting or medications may be prescribed for depression, declining memory, or hallucinations. Seek counseling, if needed.

Thinking changes can worsen when someone is ill, hospitalized, or in an unfamiliar environment.

Provide adequate time to allow response to questions or comments to maintain dignity and self-esteem.

What to Say:
– Provide simple 1-step instructions. Too many words can be overwhelming.
– Repeat instructions for those with memory problems.
– Avoid confrontation. Telling someone who is confused or having hallucinations that they are wrong usually makes them more upset.
– Speak in reassuring tones and try to divert their attention from the situation.
– Avoid using negative humor or sarcastic remarks which may be misinterpreted.

Things to Do:
– Set up clothing or toiletries in order of use.
– Establish a daily routine and stick to is as much as possible. Use a calendar or white board to provide reminders.
– Avoid multiple conversations or activities at the same time. This may add to confusion and anxiety.
– Speak face-to-face.
– Be tolerant of remarks or actions that may be uncharacteristic of previous personality of temperament.
– Reduce unrealistic expectations.
– Register for the “Safe Return” program sponsored by the Alzheimer’s Association (alz.org), which identifies those who become lost or separated from their caregivers.


Section 12 – Ideas and Suggestions for Activities

– Game shows, sharing a crossword puzzle, watching a nature or history program on TV.
– Provide videos or books on art, travel, architecture, or animals. For those with vision changes, try books on tape or CD.
– Find ways in which a person can participate in familiar activities. (i.e. give a hobby fisherman a tackle box to organize – remove the hooks, or have a home maker fold laundry or wipe counters)
– Petting, grooming, or playing with pets provides companionship, regular touch, physical and mental stimulation.
– Invite visits from relatives, friends, and neighbors.
– Attend an adult day program.
– Maintain connections with your faith community, read daily devotions or other meaningful passages, and speak with clergy.
– Set up a “relaxation station” with headphones to play nature sounds or soft music to decrease restlessness or anxiety.
– Schedule rest periods throughout the day, but avoid excessive daytime sleeping.
– Exercise! If following instructions is not possible, throw a ball or play balloon volleyball.
– Assist with a few extra arm & leg motions while dressing, bathing or other cares for more exercise.


Section 13 – Choosing a Wheelchair

Schedule an appointment with an occupational or physical therapist to find out which chair is best for individual needs. Visit a medical supply store prior to purchase. Check with your insurance to find out what type of chair is covered.

– A lightweight chair is easier to lift in/out of a car.
– A reclining chair back is helpful for those with posture changes or low blood pressure, or who needs to rest during the day.
– Footrests are important, especially when a caregiver is pushing the chair.
– Elevating leg rests may be more comfortable.
– Desk-style arms may allow easier positioning at a table for eating and other activities.
– Bolsters may improve sitting posture in the chair.
– Obtain a cushion that offers a firm sitting base and skin protection.
– ALWAYS lock wheelchair brakes prior to transfers. Clearly mark brake levers with colored tape for easier use.


Section 14 – Pain Control

– Report pain promptly to the health care team. Medication adjustment may help reduce excessive stiffness and/or muscle cramping.
– Typically, over-the-counter pain relievers can be safely used with Parkinson medications. Confirm with your physician.
– Warm packs may aid in pain control. Avoid electric heating pads, which may burn. Microwaveable or air-activated heat wraps are safer.
– Pain from falls or other accidents may be better controlled with ice packs to reduce swelling.
– Massage can aid circulation and decrease soreness.
– Use cushions as needed for comfort and support. Avoid using too many pillows, which contribute to a flexed posture.
– Increased wandering, agitation, or unexplained crying in those with dementia can be a sign of pain.
– Visit a physical therapist for specific pain evaluation and additional recommendations.


Section 15 – Approaching End of Life

Do Not Resuscitate (DNR):
There should be a frank and honest discussion about what should be done in the event of a life-threatening emergency. A DNR order means that no lifesaving techniques will occur in the event of the loss of heartbeat and/or breathing. These wishes must be declared to a physician and signed documentation must be completed. A copy must be shown to emergency personnel. A “living will” alone is often not enough to ensure these wishes are carried out.

Choosing Hospice Care:
Hospice is available to anyone with limited life expectancy and emphasizes comfort care rather than aggressive treatment. Quality, rather than quantity, of life is stressed for both care receiver and care giver. Emotional, spiritual, and practical support is provided based on individual needs. Professional medical care continues throughout.

– A physician referral is required.
– Check to see if hospice is covered by your insurance. [Hospice is covered by Medicare.]
– There are many hospice services in urban areas to choose from.

[Prior to hospice care, ask your doctor about palliative care. Palliative care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Medicare Part B may cover some palliative care treatments and medications, including doctors visits, nurse practitioners, and social workers.]

Caregiving tricks (The Caregiver Space)

Today’s Caregiver Space had a blog post containing various tricks from its caregiver community.  These two were new to me:

“OK Google.” Turning on this little charmer on your Android cellphone is a great time saver. “OK Google…. Create a new appointment with Dr. Doe for February 23, 2018, at 9am.” “OK Google…remind me to stop at CVS.” “OK Google…remind me to call the bank tomorrow afternoon.” “OK Google…remind me in 45 minutes to remove the casserole from the oven.” – Joseph A

Use a pool noodle just under the fitted sheet and on top of mattress. Keeps one from rolling out of bed! – Susan W

Here’s a link to the full post:


What’s your best caregiving trick?
by Michelle Daly
The Caregiver Space
Aug 27, 2017


“Hard-Won Advice in Books on Aging and Elder Care” (NYT)

This recent article in The New York Times is an overview of four books on aging and elder care:

* “Being Mortal,” by Atul Gawande
* “The 36-Hour Day,” by Nancy L. Mace and Peter V. Rabins
* “A Bittersweet Season,” by Jane Gross
* “Being My Mom’s Mom,” by Loretta Anne Woodward Veney

If you are interested in reading some excerpts from Atul Gawande’s book, see our blog post by longtime group member Helen Medsger, who offered some excerpts in January 2016.

And we have highlights of “The 36-Hour Day” posted to our blog post from 2012. Parts of the book are applicable to all caregivers, not just dementia caregivers.

I had never heard of the fourth book; it sounds well worth reading! Maybe we can get one of our faithful Brain Support Network volunteers to read it and offer us some advice from it.

Here’s a link to the full article:


Your Money
Hard-Won Advice in Books on Aging and Elder Care
By Ron Lieber
The New York Times
Aug. 18, 2017


Benefits of palliative care, and list of palliative care programs in Northern California

Recently I came across a research article on the emerging role of palliative care in multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The article makes the point that palliative care emphasizes “quality of life in progressive disorders” and is beneficial for all neurodegenerative disorders.

If you’d like to read the full article, check out this link:


Palliative Care and its Emerging Role in Multiple System Atrophy and Progressive Supranuclear Palsy
Parkinsonism & Related Disorders
January 2017, volume 34, pages 714

I had a feeling that if I shared this link, many of you would ask “where can I find a palliative care program?” Brain Support Network volunteer Denise Dagan created a list of as many palliative care programs as she could find on the Peninsula and in the South Bay. Since many of these medical clinics exist throughout Northern California — Sutter Health, Kaiser, PAMF, etc — this list should be useful to most of you on this list.



By Denise Dagan (Brain Support Network volunteer)
August 2017

California Pacific Medical Center (CPMC), in San Francisco, is part of Sutter Health. Information about their program can be found here: http://www.cpmc.org/services/palliative.html, or for more information contact Linda Blum, RN, NP, at 415-600-4576.

The Chinese Hospital, San Francisco Call 415-677-2349 for information.

Community Hospital of the Monterey Peninsula Ask your doctor for more information.

El Camino Hospital, Mountain View Call 650-988-7624 for information or visit https://www.elcaminohospital.org/services/palliative-care

Hospice By the Bay offers palliative care in collaboration with these hospitals:
Marin General, Sonoma Valley, Sonoma Acres and Broadway Villa Sonoma. Call 415-927-2273 for information.

Jewish Family and Children’s Services of San Francisco, the Peninsula, Marin and Sonoma Counties offers palliative care through Seniors At Home. Call 844-222-3212 or visit the JFCS’ Seniors At Home website.

Kaiser Permanente offers palliative care at several locations around the bay:
Oakland – Inpatient 510-801-7246, Outpatient 510-752-1834
Richmond – Outpatient 510-752-1834
San Francisco – Outpatient 415-833-0204
San Jose – Inpatient 408-972-6888, Outpatient 408-972-7311

Palliative Care

Santa Clara – Inpatient 408-851-7578, Outpatient 408-851-0537,

Palliative Care

Laguna Honda Hospital, San Francisco Call 415-682-1230 for information or to arrange a tour.

Mission Hospice & Home Care, San Mateo, offers in-home palliative care. Call the Clinical Outreach Team 650-554-1000 for information or visit https://www.missionhospice.org/services/transitions/.

Palo Alto Medical Foundation (PAMF) offers palliative care in several locations:
Dublin, Fremont, Mountain View, Palo Alto, Santa Cruz, and Sunnyvale


Pathways offers palliative care for any individual or private physician referral on the peninsula, south and east bay areas. Call 844-755-7855 for information.

Regional Medical Center, San Jose Call 877-868-4827 for information

St. Francis Memorial Hospital, San Francisco Call 415-353-6856 or 415-353-6180 for information.

St. Mary’s Medical Center, San Francisco Call 415-750-5907 for information.

San Francisco General Hospital offers inpatient palliative care in Comfort Care Suites. Ask your doctor for more information or visit http://hospital-zsfg.medicine.ucsf.edu/services/palliative.html.

San Mateo Medical Center, San Mateo County Health System Call 650-573-2381 for Information.

Santa Clara Valley Medical Center, San Jose Call 408-793-5974 for information.

Season’s Hospice and Palliative Care offers palliative care in both San Mateo and Santa Clara Counties. Call 855-812-1136 or email [email protected] for information.

Sequoia Hospital, in Redwood City, offers palliative care through Pathways. Sequoia Hospital is a co-owner of Pathways. Call 888-755-7855 for information.

Stanford offers palliative care in these locations:
Palo Alto – Lucile Packard Children’s Hospital. Call 650-497-8963 for information.
Palo Alto – Palliative Care at Stanford Hospital. Call 650-724-0385 for information.
San Jose – Cancer Center South Bay. Call 408-426-4900 for information.

Sutter Health This page has a list of 33 palliative care doctors affiliated with Sutter Health (including, CPMC, Mills-Peninsula Medical Center, PAMF and Sutter Pacific Medical Foundation) in several locations:
Alameda, Auburn, Berkeley, Burlingame, Castro Valley, Fremont, Hayward, Modesto, Oakland, Palo Alto, Roseville, Sacramento, San Francisco, San Jose, San Mateo, Santa Cruz, Santa Rosa, Sunnyvale, and Yuba City

UCSF Medical Center offers inpatient and outpatient palliative care at both Parnassus and Mission Bay, and inpatient palliative care at SF General Hospital. Call 415-502-6861 for more information.

Veterans Affairs (VA) offers palliative care at several locations:
Palo Alto VA Health Care System – contact them through [email protected]
San Francisco VA Medical Center offers hospice and palliative care through Geriatric Services. Call 415-221-4810, ext. 2-3224 for information.

Visiting Angels offers palliative care in several locations:
Burlingame – Call 650-344-2178 for information.
Fremont – Call 510-284-0000 for information.
San Jose – Call 408-241-5100 for information.
Sunnyvale – Call 408-735-0977 for information.

Vitas Healthcare offers palliative care in several locations:
Milpitas – Call 408-964-6800 for information.
San Francisco – Call 415-874-4400 for information.
San Mateo – Call 650-350-1835 for information.

With Grace Hospice and Palliative Care, San Jose Call 408-444-5500 for information.


“You’re Sorry for Someone’s Loss. But How Do You Say It?” (NYT)

This recent New York Times article contains some do’s and don’ts about expressing sorrow for someone’s loss.  The experts review these topics:

* digital condolences (social media and email)
* getting started (don’t procrastinate)
* draw on your memories (“share a memory of the person who died with the bereaved”)
* offer concrete ways to help
* what not to say (don’t refer to your own experiences with death)
* the importance of reaching out

The article mentions this webpage of sample condolence messages:


Here’s a link to the full article:


Smarter Living
You’re Sorry for Someone’s Loss. But How Do You Say It?
By Christopher Mele
The New York Times
Aug. 24, 2017



“Caregivers and Grief and Loss” Webinar, Aug 29

Caregiver Teleconnection is hosting another telephone conference call for family caregivers. Details are:

Caregivers and Grief and Loss
Tele-Learning Session
Tuesday, August 29, 9AM – 10AM PT
Cost: No Charge

Speaker: Evalyn Greb, LCSW, social worker

This session will help participants understand that grieving is a process that may start at the diagnosis of a degenerative condition, that loss and grief are universal human conditions that cannot be avoided but must be endured, and that caregivers may grieve over long periods of time. Evalyn will discuss the techniques and resources that are available for help.


Registration required at least 24 hours in advance.

“Mourning the Imagined” – anticipatory grief (Caregiver Space)

This recent post from “The Caregiver Space” is about anticipatory grief. Here’s the key excerpt:

“When you love someone, you have dreams for them even though you don’t realize it. And when a caregiving journey begins, particularly for someone with a long term or incurable illness, those dreams die. And you can experience a very real sense of grief and mourning, even though the person is still alive. You mourn the imagined life, the one in which things take a “natural” course and allow you to plan our your life. You mourn the loss of that person’s contributions to the family, whether it be a special recipe, or wise counsel, or them simply being the backbone of the family unit. You’re forced to let go of how things are supposed to be, and live for the moment.”

Here’s a link to the full blog post:


Mourning the Imagined
by D. Southern

The Caregiver Space
July 24, 2017


Brain Support Network Photo/Video/Recording Release

Brain Support Network
Photo/Video/Recording Release

For good and valuable consideration, the receipt and sufficiency of which is hereby acknowledged, I hereby irrevocably and perpetually grant to Brain Support Network and its respective agents, employees, representatives, successors, and assigns, and anyone authorized by them (collectively, “BSN”), the right and permission to use, reproduce, display, publish, broadcast, alter, and modify my photograph, likeness, statements, and image in video footage and recordings (collectively, “my image”) in association with materials created by Brain Support Network or used in BSN programs for any purpose, including but not limited to incorporating my image into educational, advertising, promotional and/or publicity materials, books, pamphlets or other materials (the “Materials”), in any and all media now existing or hereafter created, without territorial, time, use or any other limitations.  I acknowledge that BSN shall own all rights, title and interest in any Materials, and I waive any right I may have to inspect or approve of the Materials.

I further acknowledge such Materials could be used, reproduced, displayed, published, broadcast, or altered by BSN, but that BSN is not obligated to use my image.  I understand that I will not be paid any royalty or other compensation, and I give up any right I may have to payment if my image is used.

I hereby release, discharge, and agree to hold harmless Brain Support Network from any and all past, present, and future rights, claims, demands, damages, and actions which I, my beneficiaries, administrators and/or executors or assigns have or may have in connection with the use of my image in any and all media, including but limited to any actions for blurring, distortion, alteration, optical illusion or use in composition form.

I understand and agree that: (1) this release shall be binding upon and inure to the benefit of the parties and our respective successors, licensees, heirs, executors, and assigns (as applicable), except that my obligations may not be delegated or assigned; and (2) this release constitutes the entire agreement between the parties regarding my image and no waiver, modification or addition to this release shall be valid unless in writing and signed by the parties.

I state further that I have read or have had read to me this release prior to its execution, and that I am fully familiar with the contents hereof. The attendee agrees to permit Brain Support Network, and its assigns (including but not limited to sponsors, promoters/ organizers of an Event), free of any charges, duties or fees, to use, license, reproduce, have reproduced, show, have shown, without limitation in space or time, all soundtracks, photographs, drawings, trademarks, film/video images concerning Participant in the Event on any medium whatsoever that is sourced by or under the authority of Brain Support Network (excepting medium submitted by a Attendee as part of the Event) for any documents, reports, coverages, broadcast, program, publication, software, etc., whether past, present or future.   The Attendee further acknowledges and agrees that Brain Support Network may freely assign or license its rights to a third party.


“Role Reversal: Taking Care of Older Loved Ones” – Webinar Notes

Earlier this week, Fidelity hosted a webinar on the role reversal adult children caregivers experience in caring for their parents. Though focused on adult children caregivers, I think the webinar has lots of useful content for all of us.

A Fidelity estate planning specialist and a psychiatrist addressed these five topics:

– Having a series of conversations to identify the needs and desires of elder(s) in order to create a plan (or roadmap) toward achieving those goals.

– Consulting a legal advisor to learn what documents should be in place to ensure those desires are met.

– Consulting a financial advisor so you can plan in advance for where the elder(s) can afford to live.

– Anticipating the elder’s needs and making modifications to the current situation or moving the elder to someplace affordable, appropriate to his/her needs, and hopefully someplace he/she approves.

– Take care of yourself. Consider the personal and financial impact if you choose to do hands-on care.

Brain Support Network volunteer Denise Dagan attended the webinar and shares her notes (below). Fortunately it wasn’t a sales pitch for Fidelity.



Notes by Denise

Role Reversal: Taking Care of Older Loved Ones
August 16, 2017
Webinar Hosted by Fidelity

Role Reversal = They were there for you and now you need to be there for them.

The impact on caregivers is stress that impacts health, happiness and their financial situation.


Preparing for Care

You can’t gauge how long someone will live based on their parents’ longevity.

Best to have a conversation early about their finances, how they would like to be cared for, and to put all the necessary documents in place with instructions for family to follow when a parent dies.

Trying to have those conversations in the midst of a crisis just makes it more difficult.

Don’t think getting the necessary information and documents in place is a ‘one-and-done’ thing.

Start talking about it during natural gatherings, like holidays. Keep having those conversations until you have everything in place you will need.

Fidelity’s Aging Well Guide – More detailed information than this 1-hour webinar.

Fidelity’s Health Event Checklist – Pretty cool because you can download it and fill it in on your computer to document which documents you have completed and their location, and a summary of your care plan.

Fidelity’s Making Conversations Easier Booklet helps break down the overwhelming nature of the tasks.

1. Getting Grounded – What do you want to get out of the initial conversation? Where are you going with these conversations? Even people who do social work or are lawyers feel overwhelmed.

2. Get set – Specific conversations, even involving grandchildren, because it is a teachable moment. Approach these conversations as a family or team effort. Don’t give up if there is disagreement. Divide the tasks or research and come back together with new information to see if everyone can agree or compromise.

3. Get started – Pick a natural place to have a conversation that has no distractions, especially if you can find neutral territory. Involve distant participants through Skype or Google Hangouts. Verbalize your hope to put any family divides behind you by coming together to help a needy family member as a team.

Four Steps to Prepare:
1- Identify signals – unpaid bills, messy household, etc. are red flags they need help.
2- Push for autopilot – auto bill pay, etc.
3- Include both parents
4- Be part of meetings – meet their financial advisor, lawyer, but also neighbors and friends.

Key Documents:
* Power of Attorney – designates someone to be your health care proxy and/or legal proxy.
* Health Care Proxy – who has authority to make health care decisions for you if you are unable.
* Living Will – instructions for the health care proxy
* Will or Revocable Living Trust – an elder law attorney will help you know which is best for you.
* Documents you sign in the hospital only apply to that procedure and do not follow you forward, even at the same hospital.

Do all of these in advance. During a crisis is too late!


Managing & Paying

As soon as you finish one stack of paperwork, there’s another added to the pile.

Someone is ready for discharge from the hospital, but the family is unprepared to handle their care.

Do you have enough money to pay for care?

Where should an aging person live? Most people want to stay in their own home.

What would family have to sacrifice or give up in order to enable someone to remain in their own home?

You can put in your living will where you prefer to live.

Home Features for Added Safety:
– No-step entry
– Single Floor living
– Extra-wide doorways and halls
– Accessible electrical outlets

Build the cost or retrofitting a house for seniors or disability into a long-term budget.

Recognize that if you want to leave a financial legacy, you may be unable to do so.

Long-term care insurance considerations:
– Who are you buying the policy for? Consider the health spouse.
– Where are they likely to get care? Where do they want to live? Who’s going to provide that care?
– How will you fund long-term care insurance premiums as well as living expenses of the preferred location?

Continuing Care Communities combine standard living units with assisted living, memory units, and/or skilled nursing on one campus. It is ideal for spouses with very different care needs. Have a lawyer and financial advisor go over the cost/benefit of one of these places.

What about having elders move in with you?
– Maintaining privacy, grab bars, help with activities of daily living, etc.
– Many family members take this on themselves to the detriment of their own health and financial situation.
– You may be eligible for tax breaks if they qualify as a dependent.
– Flexible spending account may work for you. Talk with a financial advisor. It is not the same as a Health Savings Account.
– Does the care recipient qualify for veterans benefits?

Be aware of the stress you are taking on when you take in a loved one, especially if you are doing hands-on care, yourself. If you feel the stress talk to the care recipient, your doctor, your family, your religious leader. Brainstorm ways to relieve the stress for both caregiver and care recipient.

If you see the signs that your aging loved one need assistance, like unpaid bills, messy homes, body odor, etc. AND you don’t already have a plan in place, it is time to begin addressing the most urgent need first. Carve out some time to talk about those priorities and how they would like to handle it. It might be a private or a family meeting. This is the time you need to have (or get) your documents in place, before their ability to participate slips even further.

Know what documents your family member has already done. Where are those documents, who helped prepare them? Go meet the people who have helped put those documents together. It would be best to create a letter of instruction and suggestions for your inheritors to know where everything is and what to do in what order after you die. Hand it to your inheritors to be opened after you die.

Build the plan proactively. Done in an emergency they are not well thought out and are usually more expensive.

Understand Medicare doesn’t pay for long-term care, and never pays for lodging except in skilled nursing. Often, this leaves the well spouse bankrupt because they did not financially plan in advance and understand what their expenses will be in their elder and unwell years.


Taking Care of Yourself

Having others you can rely on, talk to, help make decisions with are really helpful.

Find some time for yourself every day to feed your own needs (nutrition, exercise, sleep, relaxation).

If your own health declines, you cannot be available to care for someone else.

More and more millennials are taking care of elders which often means leaving full time work, passing up promotions, depleting 401K contributions.

Caregiver burnout is a real thing that damages your health, when demands overwhelm your resources with respect to your energy and time. Who is the likely person to take over for you, but sometimes they live far away. They can still help financially, or by taking the time to find you local resources. Be sure to include some reserves in your financial plan for someone to step in if/when the primary caregiver becomes unavailable.

Be sure to have your elder sign a HIPAA form so you can have access to their medical information when they become unable to explain their medical circumstances, personally.

Getting all these things in place are also teachable moments for the youngest generation in your family.

Use these conversations as a way to connect with your elder, share family stories, what they want their legacy to be, etc. It can really bring families together when they take this good side with all the hassle and frustration of arranging documents and putting a plan in place.


Wrapping Up

– Take time to listen
– Ask, don’t assume
– Lean into your own well being
– Know your resources

Think broadly about getting documents together, not just about the unwell person but their well dependents.

Build a roadmap to ensure there’s a plan in place. No plan is perfect, but it guides you when things come up.

Have the conversation to tell people what you’ve done and where to find things

Take stock of who’s “family”? Who might come to depend on you and who do you depend on?

Identify documents and gaps
Put a team together to fill those gaps
Put the emergency plan in place.

Fidelity has documents and resources they recommend to address both financial and long-term care plans.