“A Presentation on Grief” – CaregiverTeleconnection Notes

What about when you are a caregiver of someone with dementia, and they are no longer the person they were?

In this situation you are grieving the loss of the person that they were. Bill considers it somewhere in between anticipatory grief and grieving a real loss. The person that they once were is now gone, they are now a new person, and that changes the way you relate and communicate with them. The basics still apply – finding someone to talk to, trying to come to terms with the new reality. It is complicated. While you are grieving the loss of the person, they are still there with you, in a different way.

An audio recording can be accessed on SoundCloud:


Adrian Quintero, with Stanford Parkinson’s Community Outreach, listened to the audio conference and shared his notes.  See below.

CaregiverTeleconnection is a series of audio conferences offered by the WellMed Charitable Foundation.  You can find information about this service on their website — www.wellmedcharitablefoundation.org/caregiver-support/caregiver-teleconnection/



A presentation on grief
March 26, 2020
Audio conference by CaregiverTeleconnection (Wellmed Charitable Foundation)
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach

Cynthia Hazel helps people with personal development, such as reducing stress, loving themselves more, and gaining skills to help round out their personalities.

Bill Moyer has a long background in grief recovery. He used to work in nursing and medical management and now is a certified hypnotherapist. He was his wife’s primary caregiver for the two years she was battling breast cancer. In 2014, he became a certified Grief Recovery Specialist with the Grief Recovery Institute.  Currently he works as a hypnotherapist, a Grief Recovery Specialist and life coach. He also volunteers with veterans with PTSD and chronic pain. He wishes to dispel some of the misconceptions surrounding coping with grief.

What is grief?

Grieving is how we deal with loss. In this webinar, the loss will focus primarily on decline in health or eventual death of loved one. There are many other types of losses we experience in life.

If your loved one is diagnosed with a degenerative condition, they will be experiencing their own feelings of loss. This might be a loss of independence, freedom, identity, financial security, among others. They may also have feelings of helplessness, anger, fear, or resentment. Your loved one may not be able to drive, or perform ADLs (activities of daily living) without assistance, or fearful of losing their own home. They might be aware of and concerned about the burden they are placing on loved ones. Likely there is awareness of their own vulnerability, including loss of physical or mental function. They could be showing signs of depression or anxiety. Your loved one could lash out, and unfortunately the easiest target is the caregiver.

The caregiver is also grieving. This may include loss of time, independence, earning potential, or relationship changes in the family.

Cynthia shares her own experience:  She is oldest of three children. Her brother was a lifelong smoker since his teenage years. He stopped in his sixties, but had chronic health issues as a result of smoking. He was working as a truck driver and was in a trucking accident while away on the road. He was in an induced coma when she and the family arrived to see him. Cynthia wanted to be able to do something, but she couldn’t and felt helpless. When he came out of the coma the family helped him move to be closer to family. For two or three months everything in her life was slowed down while she helped with his care. Unfortunately, he ended up passing away.  Cynthia took on the process of trying to settle her brother’s estate. Her feelings were “all over the place.” Sometimes these feelings were set aside to try to take care of all the estate work. She was left with a lot of grieving. She felt flat and numb a lot of the time. It took her several years to work it out. Cynthia’s mother has some short-term memory issues. It was hard because her mom didn’t always remember that the brother had passed away.  Cynthia accepted where she was, what she was going through, didn’t push herself to try to make herself recover on any specific timetable.

Misconceptions about grief

Bill says there are misconceptions surrounding grief, and people may offer unhelpful advice. People may offer such things as:

  • “I know how you feel.”  This is both not productive and not true.  Each relationship is unique.  Even if you’ve experienced something similar, it’s not the same.
  • “Oh he’s in a better place,” or “at least she isn’t suffering.” These may be true statements, but it doesn’t address the feelings in the moment, and the immediacy of the loss.
  • Provide advice about staying busy.  It’s simply a distraction, it doesn’t address the grief.
  • Time limits on grieving.  Also not helpful.  As time passes, it doesn’t necessarily mean the grieving passes. The only caveat is, regardless of how long the grieving is going on, if at any time the process causes you to be less able to go through normal routines of taking care of yourself. If these become interrupted, seek out professional help.
  • Advice about replacing the loss – “at least you have family/friends, etc.”  This ignores that you are coping with immediate loss, and that life has been upended.
  • Any other advice on how you should or shouldn’t feel, or should or shouldn’t act.  Those are completely unhelpful, and out of place.

What is helpful to say to someone who is grieving?

Dealing with grief takes action.  It’s a process.  It involves facing the loss, and coming to terms with the current reality.  You are now facing a new reality from here forward.  There is no correct or incorrect way to grieve.  You are going to feel what you feel.  The only caveat is if you’re contemplating harming yourself or others, in which case professional help should be sought.

If you want to help someone who is grieving, simply be there. Listen to what the griever has to say. Be a “heart with ears.” As you’re listening, there’s no evaluation, judgment, criticizing or advising.

Offer to help, but only if you are sincere with your offer.

Help where you can (watching kids, pet care, transportation, cooking, be there with going through estate or dealing with a funeral home, etc.)  Griever may be reluctant to ask for help, or may not be aware of what need help they need.

Things to remember when dealing with grief

  • This is a highly emotional time. It’s good to avoid making any major decisions, especially financial or legal decisions one may regret later.
  • Deal with the emotions. There is no wrong way to grieve (as long as no contemplation of harm to self or others)
  • Get help, seek out someone you can trust and talk to.
  • Allow yourself time- whatever time it takes. Grieve in the way you need to grieve.
  • Try to understand most folks around intend to be of help but don’t know how to, as they don’t know what you are going through.
  • Work towards coming to terms with your new reality.

It’s extremely rare that relationships are all good or all bad. There are usually ups and downs. It’s important to take a close look at the relationship. Remember the good times and take stock of times that were more difficult. The process includes making apologies when appropriate, offering forgiveness. (for anything perceived to contribute to the difficulties). Come to terms with any other difficult emotional components (maybe the person had a difficult childhood, etc.) This helps to release some of the inner emotions, including maybe some of the wishes of things we wish we hadn’t said or done.

Where Bill works, they don’t use the word “closure” with their grieving clients. Losses are life-changing events, and for that there is no closure. They prefer the term “completion.” Complete the relationship as it was, and come to terms with the new reality. The physical relationship has reached its completion, but the emotional and spiritual relationship continues on.

Writing a letter

The Grief Recovery Institute developed the Grief Recovery process. This includes expressing forgiveness, apologies, emotional understanding, and saying goodbye. This can be used for any relationship, including a living person not in our lives anymore.

This process is for the griever, not for the person lost. It is for you to come to terms with the change in reality, and to be able to move forward in a new way.

After writing the letter, they suggest finding someone who can listen to you (a “heart with ears”) read the letter out loud. This can help add to the completion concept. Any symbolic measure that helps you feel like you’re letting it go- could be burning the letter, crumpling it up, burying it, etc. Whatever helps you release and be ready to put energies into what’s to come.

Anticipatory grief (or pre-grieving)

Is grieving now over a potential or suspected loss in the future. It may be an ill family member with a terminal illness. It can also be the result of dwelling on an event that is imagined- one that may occur in the distant future, or may never occur at all.

It is experiencing similar feelings as in grieving process; emotions and behaviors as if the event has occurred, such as sadness, anxiety, fear, sleep disruption, changes in appetite, short temper, inability to focus, etc.

Grieving now over what’s not happened yet robs you the opportunity to enjoy the here and now, the current relationship as it is, or to potentially repair a damaged relationship. Anticipatory grief could interfere with being able to provide adequate care to a loved one. Try to find someone to talk to to help with this. Be kind to yourself, and those you care for. Take breaks, get help. Take time to breathe. Life is complicated, beautiful, rewarding and tragic – often all at the same time.

Questions & Answers

What about when you are a caregiver of someone with dementia, and they are no longer the person they were?

In this situation you are grieving the loss of the person that they were. Bill considers it somewhere in between anticipatory grief and grieving a real loss. The person that they once were is now gone, they are now a new person, and that changes the way you relate and communicate with them. The basics still apply – finding someone to talk to, trying to come to terms with the new reality. It is complicated. While you are grieving the loss of the person, they are still there with you, in a different way.

What about anger when dealing with someone with dementia?

Anger is going to come up, both for the person who is experiencing the changes as well as the caregiver. Again, going back to the basics. Do something to deal with the feelings. It’s perfectly normal to have the feelings, not out of the ordinary by any means.

What about coping with loneliness after a loss?

Try to create some semblance of a normal life. There will be good days and bad days. Even years later it is normal to have days of sadness, missing your loved one. It’s important to find activities you can engage in, and people you can relate to. Find ways you can re-insert yourself into what is now normal life.


“Medical Decision Making in the Face of Serious Illness” (and COVID) – Webinar Notes

The Coalition for Compassionate Care in California (CCCC) is hosting a series of webinars on advance care planning. While these webinars are generally for healthcare professionals, lay audiences can still benefit, particularly if you are looking for some ideas on how to raise the topic of advance care planning with a loved one. (The webinars seem to be scheduled for Wednesdays at noon PT. To register, see coalitionccc.org/covid-conversations-education)

The first webinar, on Wednesday, April 8th, was about advance care planning in the time of COVID. It was 70 minutes, including about 15 minutes for questions.

With COVID-19, there is a renewed sense of urgency for us all to start or continue having conversations with our loved ones about our wishes and their wishes. If we have a chronic medical condition or if we are in the vulnerable group, do we want to go to a hospital if that’s needed? Would we want to be placed on a ventilator? For a set period of time (10-14 days, for example)? What if there is a shortage of ventilators, would we forego one for ourselves?

Many of us put off the conversation about advance care planning. But, if we aren’t willing to have this conversation now — during the COVID pandemic — will we ever be able to have it? (I should point out that a single conversation will not suffice. Experts envision continuing conversations as our own medical circumstances change.) During the webinar, the point was made that we have lots of time now to reflect and discuss things with our loved one.

One of the Coalition’s best references for lay people is this conversation guide:


You can also use the webinar as a guide in your conversations. The recording is here: (registration required)


Also, I’ve shared my notes below from the webinar. I’ve tried to add in time-stamps in case you want to forward the recording to something in particular.

Much of the webinar was a review of advance health care directives and the POLST form. Here’s what was new to me:


#1 – Given COVID, our preferences for ventilation and hospitalization should be discussed.

#2 – “What you should know before you need a ventilator”


The author of this New York Times article presents several questions we should ask ourselves including:

* what do I value about my life? (This is the usual question.)

* if I will die if I am not put in a medical coma and placed on a ventilator, do I want that life support?

* if I do choose to be placed on a ventilator, how far do I want to go? Do I want to continue on the machine if my kidneys shut down? Do I want tubes feeding me so I can stay on the ventilator for weeks?

#3 – If you have serious lung, heart, or kidney disease, you should be given an opportunity to complete a POLST at this time, because of COVID.

#4 – You can put COVID-specific instructions in Section B of the POLST. (You can find a POLST at capolst.org)


#5 – We should discuss our values, including what can/can’t be sacrificed or compromised. What is acceptable to us? How do you complete this sentence —

“I’d rather die in comfort than _____”
(example – being unable to recognize my spouse)

#6 – I thought that a POLST should be completed by everyone in a care facility. In fact, CCCC is opposed to this. (You can find a POLST at capolst.org. Talk to your physician about completing it, after having a conversation with your physician.)

A POLST should be completed if the person:
– has a serious illness
– is medically frail
– has a chronic progressive condition
– could be reasonably thought of as being within 1-2 years of death. (This is called the “surprise” question for physicians — would you be surprised if your patient died in the next year or two?)

Read all about advance care planning in the time of COVID below…



Acronyms used:
ACP – advance care planning
POLST – physician orders for life-saving treatment
HCP – healthcare professional
AHCD – advance health care directive
AD – advance directive
HC – healthcare (as in, HC agent)
SNF – skilled nursing facility
EOL – end of life (as in, EOL option act)


Medical Decision Making in the Face of Serious Illness
Webinar by Coalition of Compassionate Care of California
April 8, 2020

Notes by Robin Riddle, Brain Support Network

Karl Steinberg, MD, medical director, Hospice by the Sea
Judy Thomas, JD, CEO, CCCC (Coalition for Compassionate Care in California)

Objectives of the call:
* Explain the importance of conversations in advance care planning and POLST
* Describe purpose and content of an advance health care directive and POLST
* Explain the difference between a POLST form and a health care directive
* Discuss how the COVID-19 crisis is impacting advance care planning and POLST.


Californians can live well in the face of serious illness, including COVID-19

New CCCC campaign: “COVID Conversations”
Importance of having conversations about serious illness (and palliative care)


Advance care planning (ACP) is a series of conversations over time about:
* what is important to the individual (hopes, goals, and concerns about the future)
* the realities facing the individual (diagnoses, abilities, limitations, resources, treatment preferences)

Benefits of ACP from the person’s perspective
* increases likelihood that wishes will be respected at end of life
* achieves a sense of control
* strengthens relationships (between individual, family members, and healthcare providers)
* relieves burdens on loved ones (such as surrogates)
* eases sharing of medical information around confidentiality (HIPAA)
* provides opportunities to address life closure

Benefits of ACP from the healthcare perspective:
* person-centered care
* avoid unwanted or unnecessary care
* improved family and caregiver relations
* helps to reduce moral distress among healthcare providers. (Moral distress can be expressed as PTSD at a societal level.)

Everyone should have a chance to have their:
* wishes explored
* wishes expressed
* wishes honored

Conversations about serious illness should be happening normally — at kitchen table, in religious settings, etc.

Continuum of ACP process over time (which relies on conversations over time):
* at age 18, complete an advance directive;
* update periodically;
* if diagnosed with a serious, chronic, or progressive illness, complete a POLST form.

(12:12, but he starts addressing these topics at 13:08)

How is COVID-19 impacting conversations about ACP and POLST?
* created a sense of urgency
* people are actually talking about serious illness, end-of-life, and their wishes
* we have time to reflect and interact with our families (even over Skype or FaceTime)
* threat of death
* lots of media stories
* not business-as-usual
* can’t have face-to-face conversations

Lots of great resources out there, including CCCC, Conversation Project, Prepare for Your Care, CAPC (Center to Advance Palliative Care), and Five Wishes. These websites are getting lots of traffic. And legacy.com.

So much better to plan ahead. We know things are going to get worse.

Ramped up use of palliative care services.

What HCP (healthcare professionals) need to hear from patients:
* surrogate: who is to speak for the patient if incapacitated
* treatment wishes: given COVID-19, ventilation and hospitalization should be addressed; resuscitation (CPR)
* values, goals, preferences: what makes life worth living; what can/can’t be sacrificed or compromised; what needs to be completed before death; what is acceptable to the patient (“I’d rather die in comfort than _____” – unable to recognize my family, for example); special faith-based or cultural preferences

What patients need to hear from HCP:
* ask what they know and what they want to know
* diagnoses
* threats to wellbeing and function
* natural progression of underlying disease process — including COVID-19, based on their specific health conditions
* treatment options and likely outcomes: benefits; risks and burdens; short and long-term results/expected outcomes; alternative interventions/treatments; course of disease with no aggressive intervention; comfort-focused interventions (medications, palliative sedation)


This is a good opportunity to be having these conversations. (The following information is more of a reminder of best-practices.)

What is an AHCD (advance health care directive)? Tool to make healthcare wishes known when a patient is unable to communicate. Allows a person to do either or both: 1) appoint a surrogate decision-maker (healthcare agent) and/or 2) give instructions for future healthcare decisions (treatment).

If you can only do one thing for yourself, name a surrogate!

Choosing a surrogate: willing and able; available; can make difficult decisions; knows values and preferences; will speak for you despite their interests/beliefs. May or may not be the “closest family member.” Can also name whom you don’t want to speak for you.

Who cannot be a surrogate (unless the person is related to the patient): patient’s supervising healthcare provider; any employee of the institution where the patient receives care; any operator or employee of facility where patient lives.

Verbally appointed surrogate: duration of appointment is for the period of health facility stay or 60 days, which ever is shorter. A verbally appointed surrogate has priority over a healthcare agent named in a document for the specified duration.

ACP documents in CA: (three examples)
* CMA’s “My Health Care Wishes”
* “California Advance Health Care Directive” – very easy-to-understand; from Prepare For Your Care
* something prepared by an attorney (“legalistic-looking”)

For an advance directive to be legal in CA, the document is required to have: individual’s signature; date of execution; witnessed or notarized

* Who cannot be a witness: patient’s HCP or employees of HCP; operator or employee of care facility; the agent named in the advance directive
* ONE of the witnesses cannot be related to patient (by blood, marriage, or adoption) or entitled to a portion of the person’s estate
* If person resides in a SNF (in CA), LTC ombudsman must witness
* Only witnessing a signature (doesn’t need to see the full document)

How can witnessing happen with social distancing?
* CCCC is pushing that a document be honored even if not witnessed. CCCC is working with LTC ombuds.
* Some notaries are setting up remote signature.

POLST (Physician Orders for Life-Sustaining Treatment):
* portable medical order
* provides instructions for specific medical treatment
* legally binding across healthcare sites in CA
* valid only if appropriately signed
* not for everyone. Including not for everyone nursing home or assisted living resident. Designed for those in late-stage illness.

Advance directive vs. POLST
AD: general instructions for future care; needs to be retrieved; many different forms; signed by patient and witnessed (or notary)
POLST: specific orders for current care; stays with patient; single form; signed by patient (or HC agent) and physician


Indications for POLST form: serious illness; medically frail; chronic progressive condition; “surprise” question (would you be surprised if your patient died in the next year or two)

It’s wrong for care facilities to hand out the POLST forms.

If you want current standard of care, which is aggressive care, you don’t need a POLST.

(30:18) Indications for POLST during COVID crisis: Have the conversation! Probably expand the population who could be offered POLST because most people want to know about their prognosis in light of COVID. He doesn’t think we need a COVID-specific form. (Anything COVID-specific can be written in on Section B. Example – Some people may volunteer to forego ventilation if there’s a shortage.) Ventilator issues (10-14 days of ventilation are often needed).

These conversations should be happening for anyone with a serious, chronic condition, even if they aren’t in the last year or two of life.

If you have serious lung, heart, or kidney disease, you should be given an opportunity to complete a POLST at this time, because of COVID.

There has been discussion of blanket orders of “no CPR for all COVID patients.” (He hasn’t heard about this in CA hospitals.)

(34:18) POLST form/Section A on CPR: DNR (or DNAR) doesn’t mean “just let me die”! Section A applies if patient has no pulse and is not breathing — which means that person is dead. (This is stated on form.)

(35:44) POLST form/Section B on interventions: If you have a pulse and are still breathing, Section B is of interest. You can choose full treatment, selective treatment (“no heroics;” most people select this), or comfort-focused treatment (“hospice philosophy”; not so interested in prolonging life but interested in being comfortable).

You can be DNR (Section A) and still get full treatment (including being on a ventilator). Full treatment is everything short of chest compressions and shock. If you check “Give CPR” in section A, you must check “full treatment” in section B.

People should be aware of poor prognostics with COVID-19, ventilators, and chronic illness.

(38:00) Section B – serious questions to ask ourselves if we want to be put on a ventilator during this COVID crisis:
https://nyti.ms/3bS9h6I (Dr. Kathryn Dreger, NYT)
* what do I value about my life? (This is the usual question.)
* if I will die if I am not put in a medical coma and placed on a ventilator, do I want that life support?
* if I do choose to be placed on a ventilator, how far do I want to go? Do I want to continue on the machine if my kidneys shut down? Do I want tubes feeding me so I can stay on the ventilator for weeks?

Section B: Has a “request transfer to hospital – only if comfort needs can’t be met in current location” box. Mainly only applies to nursing homes.

(40:16) Section B: In “Additional Orders,” could say “no ventilator passed 14 days,” “no antibiotics,” “no transfusions.” (This is not always given the weight other things on the POLST are given as these aren’t physician’s orders.) Could write in COVID-specific info here.

(40:50) Section D about advance directives. Patient can orally designate a healthcare surrogate. And “specified orally” can be written on form.

Section C about tube feeding: Has been removed from some POLST forms as it’s not an emergency. But it is important for advance care planning. If you leave anything blank, the default is aggressive care.


POLST Best Practices:
* should be voluntary (Shouldn’t be required for facility placement.)
* not indicated for all patients
* should be re-visited when there is unexpected or significant change of condition
* can be voided by patient at any time
* surrogate decision-makers can void or chance a POLST when circumstances change. (HCP should be involved in discussions.)

POLST is not just a check box form. It memorializes a CONVERSATION!


Pre-hospital DNR form (CMA form) is still recognized. Only relates to CPR. Requires both patient and physician signatures.

Key elements in conversations (from the HCP perspective):
* openness to talk, listen, and trust
* preferences for info and family disclosure
* understanding of their illness
* life goals, including upcoming milestones
* fears and anxieties
* unacceptable states of health, function, or tradeoffs
* not locked in forever to decisions you make today

COVID Conversations that HCP can be having with their patients: (VitalTalk, Ariadne Labs, CAPC, others)
* “Is it OK if we talk about what’s important to you and how the new coronavirus might affect you, so we can be sure we can give you the kind of care you’d want if you got the virus? This conversation can help your family and help us, your healthcare team, if that ever happened. This is a gift to us.”

If OK, then ask:
* “What do you (patient) know about the coronavirus?”
* “What can you tell me about your other medical conditions and how they affect you?”
* “Have you thought about what might happen if you were to get this virus? Do you have any specific fears about it?” (Some people are afraid that there might not be enough ventilators. Some people are afraid that they might be sent to the hospital.)

Then say:
* “It can be difficult to predict what would happen if you got the virus, already being at risk from your [medical conditions]. Many patients get mild cases, and I hope you would be one of them, but I’m worried that you could get very sick quickly, and I think it’s important for us to prepare for that possibility.”

(48:50) Great decisions aids on CCCC website: CPR, artificial hydration, tube feeding, ventilator. Non-value laden. CPR in frail, elder population is not effective but the aid doesn’t say this in that exact language. These aids DO NOT convince people not to have treatment that they are entitled to.

(50:34) Transfer/treatment decisions:
* risks of going to hospital are greater than they usually are because of the virus
* even without COVID, preferable to treat patients in “lowest” safe care location (home, SNF, assisted living)
* issues around access to family visits may influence choices of location to receive care


Managing documents: (photocopies, faxes, and scans are just as valid as original)
* give copy to healthcare agent
* make copies for other loved ones
* discuss with provider/doctor/hospital and place in medical record
* keep a copy
* bring for hospital admission

Person can always revoke directive or appoint a new agent. Best practice is to execute a new document.

If you already have a POLST, review it in light of COVID.

(53:00) Questions and Answers:

Q: How are prescriptions for self-administered medications (with EOL option act) affected?

A by Karl: Probably can’t be used for those with a positive COVID test (since the person won’t likely be alive after 2-week delay). Pharmacies still filling RXs. Doctor visits can be done via telemedicine.

Q: Chances of getting off of vents with COVID?

A by Karl: Probably 30-50% of elders are getting off of vents. Better in the younger population.

Q: If person has a POLST and they are moving to a SNF, is the POLST still good without ombuds signature?

A by Karl: Yes, unless the person wants to change his/her surrogate.

Q: Notary during COVID?

A by Judy: Notaries meeting in parking lots with person in car. Notary has hand-sanitizer and gloves. CCCC is working with state on remote notaries. Docu-sign works for a remote signature. CCCC asking for HCP to honor documents even if not properly witnessed.

A by Karl: Do a video. Not legally-binding but compelling. There are mobile notaries ($40).

(57:27) Q: How can HCP respond to questions about long-term effects of COVID on pulmonary or neurologic systems?

A by Karl: Data being collected now. We know some have chronic disabilities after ARDS (acute respiratory distress syndrome). If elder is already de-conditioned, coming off a vent is very hard and people come off even more de-conditioned.

Q: Can POLST be done via telehealth?

A by Judy: Doctor can sign and note that these are verbal orders that were discussed with patient or surrogate.

A by Karl: “Verbal consent given. Pending signature post-COVID.” Have two people sign as witnesses to MD signature.

Q:  (unknown – question not stated)

A by Judy: CCCC can share probate code for naming a surrogate verbally (if person is going into a care facility).

Q: What determines capacity to make own medical decisions?

A by Karl: If you can understand choices, appreciate differences (and consequences), express your choice, and express your reasoning, then this is what’s required. Ideally, the person says the same thing consistently over time.

Q: What if “do not transfer” box isn’t checked?

A by Karl: If “do not transfer” box is not checked, you go to hospital for any treatment you normally go to the hospital for. If you check box, you want to be treated in place unless your comfort needs can’t be met. Example – person is unconscious with low blood pressure (60/40), this person isn’t sent to hospital as the person is perfectly comfortable.

Q: Always put in coma (sedated) if put on vent?

A by Karl: Normally, yes. Very uncomfortable to be put on a vent. Part of weaning includes lightened sedation.

Q: Do you recommend a pre-hospital DNR?

A by Karl: Use the POLST.

Q: Photographs (on phone) of POLST?

A by Karl: Yes, valid.

Q: Photographs of ACD?

A by Judy: Yes, valid. Copies are valid.

Q: Don’t notaries require a thumbprint?

A by Karl: This is being waived. This is not a legal requirement but a “practice.” Get neighbors to sign in your back yard, if you can’t get a notary.

“Understanding Anticipatory Grief” – Janet Edmunson webinar notes

Recently, Janet Edmunson (janetedmunson.com) hosted a webinar on “Understanding Anticipatory Grief.” Anticipatory grief is the grief we experience before a loved one dies, and is common when dealing with a loved one with a degenerative condition.  This webinar is appropriate for all caregivers.

I’ve known Janet for almost 20 years.  She cared for her husband Charles, diagnosed during life with progressive supranuclear palsy and upon death with corticobasal degeneration.  If you are interested in brain donation for yourself or a loved one — so that you may confirm the diagnosis and enable research — check out our website.

Janet’s webinar can be viewed here:  (registration required)


Adrian Quintero, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared his notes.



“Understanding Anticipatory Grief”
Webinar by Janet Edmunson
March 17, 2020

Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach

Janet Edmunson took care of her husband Charles during the five years he faced a movement disorder with cognitive issues, which was later confirmed to be corticobasal degeneration (CBD), an atypical Parkinsonian disorder.

“No one ever told me that grief felt so like fear.” C. S. Lewis (who lost his wife)

Janet was already experiencing grief, and Charles hadn’t even died. It was a growing fear and sadness of what life without Charles would be like, as well as what he was thinking and feeling throughout  his illness. The last year of his life he couldn’t talk and express any thoughts or fears to her. She encourages people to have these conversations with loved ones if at all possible.

“Grief is the conflicting group of human emotions caused by an end to or change in a familiar pattern of behavior.” A definition of grief from James and Friedman, The Grief Recovery Handbook.

These changes come from the death, but they come long before the death.

The grief we experience before a loved one dies is called anticipatory, or incremental, grief. It is composed of many losses along the way, moving towards the ultimate grief, death.

In addition, there is likely fear, dread, and worry about what the death will be like.

— What will it be like for the loved one during the dying process?

— What will your life be like after the person died?

— Will I be up for the challenge of how life is different?

In the caregiving experience, you may be making meaning, giving the loved one the best life they can have, etc.

Janet had a fear she would “fall apart” after her husband’s death.

What are the losses?

— The loved one may experience loss of abilities, such as reading, writing, walking, and talking

— Loss of quality of life

— Past loss – moments that won’t happen again (such as trips together)

— Present loss – reduced social life, los of shared activities, etc.

— Future loss – events going forward that won’t be able to be shared. (For example, having a partner into one’s old age)

Concurrent stressors can compound anticipatory grief

— All the things that are needed to provide care or coordinate care for loved one

— Working

— Taking care of the house

Anticipatory grief is different from grief after death

Even if you are experiencing anticipatory grief from a loved one having a degenerative disease, doesn’t mean you will have less grief after the loved one dies. The experience can be as difficult as losing someone suddenly. Death is a new dimension of grief.

Positive and negative can sit together

Just because we are feeling negative emotions such as sadness and fear, doesn’t mean we can’t also experience positive emotions, such as:

  • Joy
  • Gratitude
  • Serenity
  • Interest
  • Hope
  • Pride
  • Amusement
  • Awe
  • Love

Positivity puts the breaks on too much negativity. For grieving spouses, they need and want positive and emotions in their lives.

“Experiencing humor, laughter and happiness was strongly associated with favorable bereavement adjustments.”

This also applies to those of us experiencing anticipatory grief. Positivity matters, especially during trying times. It helps us to have resilient outcomes, and recover from grief faster. It’s important not to feel guilty when you find yourself feeling such things as joyful, full of love, or grateful.

There is something called the Twelve Freedoms of Healing in Grief. These are a few of them.

You have the freedom to:

  • Talk about your grief
  • Allow for numbness
  • Experience grief attacks or memory embraces
  • Allow a search for meaning
  • Treasure your memories

Affirmations for Emotions

It’s okay to mourn what might have been.  With a progressive and degenerative illness, Potential or promise for someone’s life may never been realized. (The person may pass in middle of career).

From The Grief Recovery Handbook:  The authors say every relationship has things that are incomplete. It might help to mourn what could have been by asking:

What do you wish was..?

  • Different?
  • Better?
  • More?

The authors continue to say, what we can do is apologize, forgive (ourselves and our loved one), and verbalize. We can do this in a letter that is never sent. Writing it down can be helpful.

For example:

  • Dad, I apologize for…
  • Dad, I forgive you for…
  • Dad, I want you to know…

I’ve already lost him/her.  Maybe the person is no longer able to talk. Perhaps there is a moment where you realize you cannot go to the loved one for the advice you normally would seek from them.

A book that Janet found helpful was Getting To The Other Side Of Grief. It asks probing questions to help understand the feelings of your loss. Questions such as:

  • What do I value most about our relationship?
  • What special memories do I have of my loved one?
  • What will I take with me to cherish?

Defining what you’ve lost can help you to grieve.

I reflect on our love.  Janet has a framed poem he wrote her. She encourages people to pull out old letters or cards, or look at old photos and videos to reflect on when things were good.

I welcome my tears.  You never know when the tears will come. People talk about them coming in waves. There may be a song that comes on that touches you and floods you with feelings. Tears are a way to honor your loved one; they don’t have to be bad. You wouldn’t be crying if you didn’t love the person. If, however, you are crying all the time, Janet encourages you to go to a support group, talk to a clergy member or a counselor.

I let the love flow, even when all else is lost. She encourages reading the book Tuesdays With Morrie, about the relationship between a sociologist and a man with ALS.  Ted Koppel did an interview with Morrie, who was losing his ability to speak, and Morrie’s best friend was losing his ability to hear. Ted asked Morrie, what will it be like to be together, and Morrie replied, “Lots of love will be passing between us.” When all else is lost, find the simple presence together, letting the love flow between you and your loved one. It may be a touch. 

Affirmations for Meaning

I create meaningful traditions.  Maybe you and your loved one can’t go out to a restaurant anymore, but you can have a special meal at home. Perhaps there is a special drive you can take together through nature.

What traditions will you continue?

What traditions will you start?  Date night? Family dinner? Grandkid day? Game day? Daily walk (or wheelchair ride) in the neighborhood?

I find acceptance.  Janet recommends the Serenity Prayer:

God grant me the Serenity
To accept the things I cannot change
Courage to change the things I can
And the wisdom
To know the difference

“The way to accept it is to make meaning out of it” — Peg B, an instructor from a mind/body course for people with medical conditions.

Questions to consider:

— What is this teaching us?

— What is this experience giving us?

— How will it help each of us grow?

I have things to look forward to. This might be a difficult affirmation if you are far along in the journey with your loved one’s disease. You’ve lost so much already, what is there to look forward to? More losses? You don’t have to look too far forward; it can be in just the next two weeks.

Right now with the Covid-19 virus, it can be hard to look too far forward, as we don’t know what is going to happen in the next couple weeks. Some things you may be looking forward to, like a visit from the grandkids, are not going to happen in the next two weeks. We can all look forward to the little things- a loved one’s smile, enjoying dessert together, etc.

Things to remember when it comes to anticipatory grief

  • Accept that it is normal
  • Acknowledge your losses
  • Connect with others (even by phone or Facetime)
  • Reflect on the remaining time
  • Take advantage of your support system (so you have the emotional energy to get through this)
  • Say yes to counseling

Recommended Books

Getting To The Other Side Of Grief by Zonnebelt-Smeenge and De Vries

The Healing Journey Through Grief by Rich

The Grief Recovery Handbook by James and Friedman

Tuesdays with Morrie by Mitch Albom


How do I handle grief if my marriage was not a good marriage? (From a woman who is the caregiver for her husband, but feels he didn’t really love her)

You are not alone, talk to others who are in a similar situation. Reading the Grief Recovery Handbook could be helpful, and asking the questions from before of “what do I wish was different?” etc. Acknowledge the courage and strength you have for caring for him given this situation.

Any advice on hospice?

It’s never too early to ask about hospice. You can go two routes- you can talk to one of your doctors and you can ask for a referral to hospice. The other option is you can also call hospice directly, and they will come in and do an evaluation and decide if it’s time (they decide yes or no). They will tell you all about their rules, each hospice is a little different (all managed by MediCare). When they come in, they take over the care, they are the primary now, they can talk to your doctors. They all usually have social workers, and spiritual counselors as well. They have nurses, aides and volunteers as well. You can interview more than one hospice; or change if one isn’t working. You are in the driver’s seat.

Many hospices have bereavement groups or information, and you don’t have to be on hospice to have access to those.

Janet is partial to bereavement groups that have a start and an end date, rather than ones that are ongoing.

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight” Kahil Gibran



“Crying in Your Car Counts as Self-Care” (NYT article)

One of the caregivers in our local support group shared this recent New York Times article on self-care.  If you can get beyond the title, she thought the article shared some good suggestions.

Those suggestions include:

  • “Finding places where you can have space for yourself to reflect and think and feel.”
  • Meditation.  Even five minutes a day.
  • Toast your confinement with a cocktail/mocktail party.
  • Keeping a gratitude, or “silver lining,” list, which you can either do yourself or as an activity with your family.

The article is here:

Crying in Your Car Counts as Self-Care
Ways to find headroom and even joy right now.
By Jessica Grose
New York Times
April 8, 2020


You might check out the comments section of the article to see additional ideas.









“Having a Back-Up Plan – What if You Get Sick?” – UCSF caregiving webinar notes

In response to the covid-19 outbreak and shelter-in-place orders, the UCSF Memory and Aging Center (MAC) is hosting a weekly caregiving webinar series.  These webinars are focused on providing information and resources to caregivers spending more time at home with their loved one and less caregiving support than usual.

Thanks to Brain Support Network local support group member Helen Medsger for alerting us to this caregiving webinar series.

Webinars are presented every Wednesday from noon to 1pm (CA time).  Check out the schedule (memory.ucsf.edu/covid) of upcoming topics, register for upcoming webinars, and view recorded past webinars in the series.

The first topic presented on April 1st was “Having a Back-Up Plan – What if You Get Sick?”  Two terrific RNs at the MAC were speakers — Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP.

The recording of the April 1st webinar is here:


Reviewing the webinar recording or reading the notes below is a must for all caregivers at this time!  It is always a good idea to have a back-up plan because it is always a possibility that a caregiver may become ill, injured, or otherwise unable to provide care.  The covid-19 pandemic brings some urgency to the issue of creating or reviewing your back-up plan.  The speakers make the point that a back-up plan should include information about end-of-life care preferences.

Thanks to Brain Support Network staff member Denise Dagan for attending the webinar, and sharing her notes.  Denise says:

This webinar walks caregivers through who should be your back-up person (or people) and what information they will need to step into your shoes.  In addition, it provides links to several resources to help caregivers:

  • Identify community caregiver support (volunteers, in-home care services, etc.)
  • Create a personal care plan (printable worksheet)
  • Have a difficult conversation about end-of-life wishes
  • Complete an advance directive
  • Stay socially connected
  • Keep up to date about covid-19

See Denise’s notes below.



Having a Back-Up Plan in Place – What if You Get Sick?
Webinar hosted by UCSF Memory and Aging Center
April 1, 2020
Presenters:  Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP
Notes by Denise Dagan

What is a back-up plan?

A back-up plan:

  • Is a way to be prepared for meeting your loved one’s needs in the event you, the caregiver, gets sick and cannot manage caregiving responsibilities.
  • Ideally, you’ll never need a back-up plan, yet it may offer you peace of mind to know you’ve got one.
  • Major considerations include WHO could care for your loved one and WHAT is needed to ensure a smooth transition in care.

Think about the people/resources you rely on for support.  

* Ideas may include a family member, friend, neighbor, clergy, or a member of your support group whom you’ve grown close to.  These people may be providing emotional connection, advice/problem solving, hands-on care, meals or errands.  Due to covid-19 these support people may not currently be available.  Day programs are closed, you may have asked in-home caregivers to suspend visits

* The Alzheimer’s Association 24/7 Helpline (800-272-3900)

* Your health care provider, a case manager, social worker or nurse

* A counselor or therapist

Make a list of people you can call on if you need assistance:

– This can be family, friends, neighbors, clergy, or members of your support group.  It’s important to ensure that the person or people that are on your back-up list know that you may call upon them to help.  Ensure everyone understands just what type of back-up they may be asked to provide

– Consider what decisions you should make ahead of time:

    • Will help come to you or will you go to them?
    • Consider community resources.  Most are still running during covid-19.
    • Consider hiring an in-home care aid or placing your loved one in a care facility.  Care facilities have new rules during covid-19 both for accepting new residents and permitting visitation.

– Community and Aging Resources:

Keep your health care provider informed:

  • Connect early with your and your loved one’s health care provider.  There may be delays in hearing back so contact them early and often.  They may be able to help you problem solve and/or create a back up plan with you
  • Keep them apprised of your needs and your back-up plan
  • Discuss protocols for covid-19 screening

Things to have on hand that pertain to the person you care for:
(Gather in one visible, accessible place documents and information your back-up person/people will need)

– Health insurance card(s)

– List of current medical conditions, medications, allergies

– Contact information for key people involved in your loved one’s care (health care provider, family members, friends, neighbors)

– Healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)

A care plan:

A care plan allows you to write down important aspects of care.  For example, how the person communicates their needs and express emotions; what a typical day is like (bedtime, preferred activities), and tips for successful care.

You can write a care plan in any way you like, as long as it is organized and easy for your back up person/people to find and read.  A sample worksheet is available at:


Have needed supplies organized and readily available:  Suggestions include —

    • Several days supply of medications (some experts recommend a 90-day supply) for both yourself and your career
    • Change(s) of clothing and toiletries
    • Needed supplies such as incontinence briefs, wipes, hearing aid batteries, denture cleaner and/or adhesive, glasses, etc.
    • Comforting objects, activities, and/or music player with earphones
    • Preferred snacks
    • A note on the outside of the emergency bag to remind you to include a cell phone and charger

Advance directives:

– A way to document end-of-life decisions and your values about your loved one’s care and their values about their own care.  If you have one, find it and renew it.  It’s OK if you can’t sign one or get it witnessed now.  Reading it and discussing it to have a plan in place can still be helpful.

– The Conversation Project (theconversationproject.org).  Facilitates difficult conversations.  Walks you through issues to consider and how to put preferences for end-of-life care in place.

– Share your notes by scanning, faxing, emailing, or sending pictures of the document to the people that you trust and your healthcare provider.

– Resources to help you prepare an advance directive (updated for covid-19):

If you get sick:

If your symptoms are mild and you can stay home:

  • Alter your expectations fro your loved one’s care.  If they stay in their PJs all day, don’t get bathed daily or watch more TV than typical, that’s okay>
  • Most important thing is to ensure safety in your home.  If the person you care for is at risk for wandering, keep doors bolted.  Keep a current photo of them.  Consider enrolling them in the Safe Return program through the Alzheimer’s Association.  If your loved one is unsafe in the kitchen, disable the appliances.
  • Put activities into place that require the least amount of effort by you.  Have activities set up where your loved one usually sits.  Remote control devices for television and music

If your symptoms are more severe and you need care:

  • Ask your back-up person to assume care of your loved one
  • Notify your healthcare provider and your loved one’s healthcare provider
  • Call 911 or go to your emergency room for emergencies
  • If you need to go to the hospital or emergency room and there is no one to care for your loved one, bring them with you.  Explain that you are their caregiver.

Resources for staying connected:

  • Alzheimer’s Association 24/7 Helpline – 800-272-3900)
  • California resources:
    • Covia: online and phone support and activities:  covia.org/services/well-connected/ or 877-797-7299
    • Institute on Aging 24-hour Friendship Line:  Serves Bay Area counties 800-971-0016 or 415-750-4111

Resources for staying informed about covid-19:

  • Centers for Disease Control: https://www.cdd.gov
  • U.S. Department of Health and Human Services: https://www.hhs.gov
  • This webinar will be posted on the UCSF Memory and Aging website and we will include copies of the documents discussed today.

Subsequent webinars in this series will go into more detail about obtaining supplies, protect your health as a caregiver, etc.


Question & Answer

Q. For those with family members who don’t live nearby, what if remote back up plan people cannot mobilize to help?
A. Think more broadly about people in the area who wouldn’t have to travel and who could be part of a second tier back up plan.  Perhaps you can investigate a local in-home care agency you can employ?

Q. Can Adult Protective Services be a resource?
A. Anecdotally, caregivers who have reached out to county CPS out of concern that they would not be able to provide adequate care for their loved one.  In more normal times, CPS has been helpful in directing families toward community resources to make individual care situations safer.  If you feel there is nobody to help you and you need to be hospitalized, CPS may be the only resource who can effectively step in to monitor the situation and put care in place for your loved one’s safety.  Obviously, it is not ideal, or should it be your first step, but it is a resource.  You can even reach out to local law enforcement if your situation is entirely unsafe.

Q. Husband has Alzheimer’s and caregiver has asthma.  In-home care are washing hands, disinfecting, etc.  What else can they do to protect their health?
A. You should still continue to have in-home care.  You are doing just the right things.  Gloves, masks, gowns too, if they are available. Be sure to tell caregivers not to come if they are feeling at all unwell.  Ensure you have enough medications in stock.  This wife should also connect with her healthcare team to develop a plan for her care and prevention of her becoming ill.  She should talk with them about what her care plan is and what she should do if she does become ill.  This can take longer than it did before the covid-19 outbreak so call soon.  You may be directed to a tele-health appointment or just a phone call for these non-urgent matters.

Q. How can caregivers address mood symptoms, mental health suffering, anger, aggression, etc. especially during shelter in place?
A. Everyone feels more anxiety, worry, anger, frustration because our routines have shifted.  Disruption of routing is especially hard on people with dementia.  We are all trying to stay informed, but the news provokes anxiety so consider turning off the news.  Put on music or positive message TV and movies.  If the caregiver’s emotions are running high, those are cues that provoke higher level of emotions in care recipients.  Consider calming yourself to calm your entire household.

Next week this webinar series will present suggestions for keeping active, distracted, etc.  Can you identify a pattern to the mood changes.  Is there a triggering event, like the news or end of the day (sundowning).  Change what you can to prevent those mood changes from happening.

Q. Caregiver not able to take Mom out to enjoy sunshine.  How to minimize risk and still get out.
A. Exercise is still an essential activity so it is permitted.  The restriction is to stay six feet from others.  This can be difficult to abide by with someone who has memory loss.  Perhaps hold hands and distract them from moving too close to others.  Consider wearing a mask if you must pass other more closely.  Consider going for a car ride, just to get out. Perhaps take a picnic to share in the safety of your car.  There are live broadcasted and online archived exercise classes, like yoga, tai chi, chair aerobics, etc.

Q. Husband doesn’t remember to social distance if we go out for a walk.  Driving gets us out, but doesn’t get him exercise.
A. Consider going out when there are not many others out?  Early morning walk or take a less frequented route? If you and your care recipient wear a mask and others around them are, it can be a reminder about social distancing.

Q. Grocery stores social distancing doesn’t work for those with dementia who don’t remember to social distance.
A. You don’t have to shop just during the early morning senior shopping hours.  Shop late in the day or consider having your groceries delivered.  It may be good for you to get out and shop, so ask a friend or relative to keep an eye on the person you care for.

Q. At what point do you recommend calling for help if the person you are caring for is becoming aggressive.
A. Can you identify and modify triggers of aggression?  Stay in touch with your medical team so they are aware of the situation.  They may be able to help problem solve the situation.  Ask how you might manage this behavior.  Consider medications.  Give the medical team feedback as to how their recommendations are working.  The Alzheimer’s Association Helpline may be able to help de-escalate the situation.

Q. Spouse recently unable to walk unaided so need in-home care.  How safe is it to have in-home caregivers coming in?
A. Hire from an agency which employs those certified in safe care practices.  Always ask the healthcare providers directly to NOT come to work if they feel at all well (cough, exposed to someone who’s ill, traveled to exposed area, fever).  If this person’s care needs have recently changed dramatically, there is some care education that can be useful to this caregiver with respect to learning how to look after someone who is now bed bound. There are many online videos so the caregiver can learn about safe positioning during eating, in-bed bathing, repositioning in bed, toileting, transfers, etc. so the caregiver doesn’t hurt themselves doing these tasks.  A referral to home care may be appropriate, too.  That would bring a nurse and other resources to the home to teach the family caregiver these tasks and what equipment will be helpful to have in the home henceforth.

Q. What information is helpful to share with people who need specific information to provide the best care possible?
A. A personal healthcare plan is a roadmap to provide the best care possible for someone. It is especially useful in a transition of care from the primary caregiver to in-home care or a residential care facility.  This would be the best thing to have in place at this time – just in case the primary caregiver becomes ill, so your back up plan person/people can step in seamlessly.

Q. For those who have not completed an advance directive and the person with dementia can no longer make decisions, what to do now?
A. Don’t panic if you don’t have an advance directive.  It is still important to write down what you know about the wishes of the person you care.  There are templates and forms you can use, as mentioned in this talk, but it can just be handwritten and doesn’t need to be signed and witnessed.  These documents are guidelines so care of an individual align as closely as possible to the person’s wishes.  Most healthcare services are willing to take your notes into account.

If you have an advance directive, now is a good time to update it.  These documents can always be updated as new information is learned so write down what you know now and share it with other family members and medical team.  Many times people don’t remember if they have ever made an advance directive.  Contact your clinic to see if one is on file. If not, look around the house, safety deposit boxes, etc.  If you don’t find one, jot down what you know and share it with the medical team.

Q. What about a personal healthcare plan for caregivers?  Are there any recommendations that should be included to reduce risk of contracting covid, other than social distancing, hand washing, etc.
A. There is a lot of research into treatments and creating a vaccine for covid, but there are no known supplements, medications to prevent or treat this disease.  That is why we are relying on the public healthcare measures.  If you have a chronic condition, like diabetes or high blood pressure, etc. the best plan is managing those conditions as well as possible for your best health in the short and long term.

Q. How do you find a professional to step in to care for your loved one?
A. Start with in-home care agencies in your area.  The caregivers will be screened and well trained. A case manager or social worker can help you assess your needs and put you in touch with an in-home care agency.

Q. Advice for a wandering person who will remove a medic-alert bracelet?
A. Sometimes, you can secure those bracelets in a way that is hard to remove.  If caregivers also wear a medic-alert bracelet, you can gain cooperation in keeping it on.  There are electronic devices you can employ.  The Alzheimer’s Helpline has many suggestions for keeping ID on your loved one.  Let your local police department know about your loved one and provide them with a good photo.  Be sure they have a wallet or purse with ID or keep a note with their ID in their shoe or a pocket each morning.  You can regularly dress them in colorful clothing, take a photo of them each day to show what they are wearing for those who may be looking for them later in the day if they should wander off.

Brief summary of recommendations – essentially, who might help you and what will they need to step into your shoes.

  • Identify your back up person/or people.
  • Ensure those people know you may call upon them.
  • Ensure those people know what they may be asked to do.
  • Think about who can be your second tier back up people – extended family member, neighbor, etc.
  • Gather information your back up person/people will need for your care receiver’s best care.
  • Make sure your back up person/people know where to find this information:
    • Personal care plan.
    • Insurance cards
    • Advance directive
    • List of current medications, dosages and times
    • Contacts involved with the person’s care (doctors, pharmacy, family, neighbors, clergy)

For upcoming and recorded webinars in this series:  memory.UCSF.edu/covid