Advice from a spouse caregiver (eight items)

I read this advice today on a Yahoo!Group from a caregiver whose husband has passed away. You might find some value here.

Here are some things that helped us:

1. [My husband] wanted to know what was happening, so he uses his computer to research the disease in the early stages. I was able to help him with good resources. I’m both a nurse and a librarian, so this was easy for me. You might want to seek out the assistance of a reference librarian if this would be helpful for you. … We even enclosed [some print information about the diagnosis] with our Christmas newsletter shortly after [my husband’s] diagnosis. Learn enough to get a sense of what to expect, but don’t obsess. No two cases are exactly alike.

2. I wish I had set aside more time, especially early on when [my husband was] still was able to get out and about, to make plenty of memories to hold onto after he was gone. But I’m eternally grateful for those we did make time for. Even after he was home bound, we did some fun things together and with our adult sons. It was good for them to have those good memories, too.

3. Make a detailed list of things other people could help you with. You may not need or get them all, but make the list anyway. When friends ask what they can do, you’ll not be able to think of anything otherwise. With the list, you can choose something that person is especially suited to do and ask for that. When you’re feeling in over your head, use the list to seek out help as well. Do not hesitate to ask! You have people in your life who love you and/or Ted and want to help, whether you realize it or not – neighbors, church or other organization members, coworkers and/or former coworkers, community volunteers, family members. Don’t hide your needs and you’ll be surprised how much help is there you didn’t even know about.

4. Consider bringing hospice in sooner rather than later, especially if they offer palliative care in your area. They aren’t just for people who are actively dying! Mike started getting hospice services when he was still going to work every day, and was with them for nearly two years. They were immensely helpful with equipment, supplies, respite, ideas for workarounds, volunteer companionship and project assistance, finding facility care when the time came, nursing care and communication with [my husband’s] primary care doctor and neurologist, emotional and spiritual support, you name it.

5. Get the equipment you need when you need it, but don’t get ahead of yourself and spend a lot of money on expensive equipment you may only need for a short while. Hospice can *really* help with this. For the big ticket items, think about how you’ll be able to use them after [your husband] is gone. (I know. It’s hard to think about his being gone at this point. And you shouldn’t dwell on it. But do be practical.) we bought a recliner/lift chair that [my husband] basically lived in for more than 1 1/2 years. Almost two years after he left me, I’m still using it daily. We also bought a recumbent exercise bike so [my husband] could continue exercising after he could no longer ride his regular bicycle. …

6. If you haven’t done so already, get a durable power of attorney for yourself and set yourself up as the designated payer for social security. [My husband] was nervous about doing this, but he knew it was necessary. I kept him in the loop and got his agreement with every decision, and that let him know he could trust me to make the same decisions he would. His cognition was slow but lucid until the end, thankfully. Some people have to make those decisions without input from the person they are making them for. We waited almost too long to set the social security thing up because we didn’t realize they didn’t recognize a POA. Once [my husband] could no longer sign his name or speak clearly on the phone, both were essential and I was glad we had the foresight to put them into place before we got that far.

7. Know that when you are stressed, it may be hard to figure out what to do first even with simple things like getting up in the morning. I made myself index cards for the bathroom and kitchen with step by step instructions for morning and evening routines (4 cards). Then I put them back to back in two snack size ziplock bags to waterproof them. When I was so overwhelmed I was paralyzed just trying to figure out whether to brush my teeth or take a shower first, all I had to do was follow the list. I still use the bathroom list sometimes.

8. Keep a variety of grab and go meals on hand for when cooking or even planning is just too hard. If you have a good size freezer, use it liberally. Same goes for you slow cooker. When you do cook, make big batches and freeze single-serve microwaveable portions. If anyone offers to bring you a meal, let them!


2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.


Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:


Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.


This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

“Hands-on Caregiving” – notes from two lectures

Hope everyone is enjoying warm holidays with family and friends.

In November 2017, the National Caregiving Conference was held in Chicago. Many of the sessions were webcast. Brain Support Network volunteer Denise Dagan listened to many of the sessions, including a session titled “hands-on caregiving.”

There were two speakers – Penny Patnaude, who calls herself a “caregiver strategist,” and pastor Bruce Hanson, former caregiver to his wife with diabetes.

The first part of Penny’s talk is aimed at those dealing with behavioral issues in the context of dementia. But the second part of her talk is about general caregiving.

I liked Penny’s suggestions on creating a support network for the caregiver. About friends, family, fellow church members, club members, and neighborhood children, ask yourself: “Who loves reading, playing cards, watching TV, going to museums, puzzles, music, knitting, painting, etc?” Can two people (different days/times) come over 2 hours each week to spend time with your loved one while you get some respite?

Penny introduced the topic of a “caregiver contract.” This is a formal agreement among family members to compensate a family member for providing care. You can read more about this type of contract here:

Denise’s notes about the two lectures are below.


Notes by Denise Dagan, Brain Support Network Volunteer

Hands-on Caregiving with Pastor Bruce Hanson and Penny Patnaude
2017 National Caregiving Conference
November 10, 2017

Penny Patnaude – Caregiver Strategist, LLC

Behavioral Difficulties:
– Wandering can be caused by a feeling of loss, make sure your loved ones receive plenty of exercise, limit caffeine, tea, soda and excessive napping.
– Ask physician for a sedative
– Activities throughout the day
– Paint walls and doors in same color makes finding the exit difficult
– Add pleasant circumstances into the environment (music, pet, fun)

Sundowning Syndrome:
– Use bright lighting in the late afternoon and evenings
– Avoid napping, keep consistent schedules
– Ask doctor for medication (you may have to try several & may not work at all)
– Meet them where they are, don’t argue or discount their hallucination/delusion. Use therapeutic fibbing, which is altering the truth to minimize agitation. Tell them whatever it takes to calm them.
– Distract them
– Add pleasant circumstances
– Avoid agitating topics

Eating Challenges:
– Bite size portions (cut before you serve)
– Finger food
– Ensure, carnation drinks, protein shakes
– Smoothies with pulverized veg & fruits
– Hydrate often
– Large grip utensils & dinner wear (suction cups on the bottom of bowls & plates)
– Ice cream, sweets, soft items easily digestible (non diabetics)
– Salty foods (non high blood pressure)

– Older generation didn’t bathe often when they were young.
– Make the room, clothes & water warm
– Prepare ahead of taking them into the bathroom (clean towels)
– Pleasant aroma
– Talk soothingly
– Use a sitting stool with a slide seat (soap it so they slide into tub easily)
– Let them keep their undergarments on.

– Remove spoiled food
– Remove throw rugs
– Remote cords and cables to prevent tripping
– Keep pathways clear
– Get rid of clutter
– Install gas shut offs
– Use ID tools. Project Lifesavers (GPS). Sheriff’s Dept. may be able to help with this.

Negative feelings (in the caregiver):
– Overwhelmed
– Anger
– Agony
– Stress

Support Tribe:
– Identify skills of loved ones, friends, members of church, clubs and kids.
– Ask yourself, “Who loves reading, playing cards, watching TV, go to museums, puzzles, music, knitting, painting, etc.” Then, enlist those people to do those things with your care recipient.
– Ask for 2 hrs/week from at least 2 people to give yourself some respite.

Caregiver Contract Guide:
– Include the names of all people involved
– What services will be provided by each person
– When will services take place
– What are the service fees
– How often will the charges occur

Caregiver Contract Benefits:
– Can be used to spend down care receiver’s money so they qualify for medicaid.
– Provide financial relief to the caregiver
– Keeps everyone responsible.

To learn more about Caregiver Contracts:

Pastor Bruce Hanson Former caregiver of his wife who has passed away. She was an insulin dependent diabetic when they married. He’s a technical guy so he took care of her diabetes equipment. Over time her diabetes and overall health worsened dramatically. He promised never to put her in a nursing home. He turned their house into a hospital with lifts and other equipment.

Learn what your insurance company will and won’t cover and be prepared to fight to get what they should be covering.

Learn about Medicare and Medicaid. They won’t tell you what they will cover unless you know to ask for it and how.

Learn where to find equipment. This is even more difficult when you live in a rural area, like they did.

Which ambulance service can you use? Which hospital is that insurance company going to take you to? Once you are at one hospital it is nearly impossible to move to another one.

Need some way to keep careful track of all the different doctors, medications, medical history, pharmaceutical history, etc.

Keep together all the information you will need for emergency room visits, and keep it available to travel with the care recipient.

Personally, he stayed out of her personal/private care, but left that to a female caregiver. He helped with lifting and managing her overall care.

Learn how to do all in-home care necessary to prevent having to transfer her to medical facilities whenever possible because of their rural location.

The goal is to provide care in the home so the person needing care is as comfortable as possible. Be persistent and resourceful. Get involved with your state/federal legislative policy. Don’t be faint of heart. Don’t leave a hospitalized care recipient alone at any time. Be their advocate.

“If you can’t get in the front door, try the side door, the back door, the garage door, and if you can’t get into any of them, make a door.”

Sometimes, you make mistakes. You’re only human. The flip side is, if you aren’t there doing everything for them, who would be?

Not a Jolly Holiday? Use this Guide to Find Gratitude

This is a thoughtful article from Family Caregiver Alliance about caregivers not feeling jolly during the winter holidays and some steps they might take to find gratitude.

Here’s a short excerpt: “But no well is bottomless and no caregiver can give in a limitless manner. One can’t always be kind, on-alert, supportive, compassionate, protective, and more, without doing harm to you. In this season of giving, acknowledgment of the giving that goes on all year long can get overlooked.”

The article suggests an easy exercise you can do to focus your actions. This might be a good exercise to do with your family member with a neurological diagnosis, if he/she can participate. It’s best to read the details of the exercise below. It relates to:

* determining which people to connect with
* embracing the season’s activities
* cultivating a sense of goodwill towards yourself and others
* asking yourself “what is doable and what reflects wishful thinking?”

And here are some examples of actions to take this season:

* give the gift of listening
* communicate gently but honestly
* revisit expectations
* cultivate gratitude in your life


Not a Jolly Holiday? Use this Guide to Find Gratitude in the Season
Submitted on Fri, 2015-12-11
Family Caregiver Alliance

Navigating through a jolly holiday season and wishing for a wonderful new year when caring for someone with a chronic, debilitating health condition might have you thinking, “This is no holiday!” But we keep hearing that expressing thanks can lead to a healthier, happier, and less-stressed life. Noted expert Robert Emmons defines gratitude in part as, “… an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.”

Family caregivers are often portrayed as the epitome of goodness, and rightly so. Time and again spouses, adult children, other relatives, and friends who care for loved ones with Alzheimer’s, stroke, PTSD, TBI, and other health conditions, dig deep to put the needs of another before their own needs. They move personal life priorities to the back burner— work, family, travel, their own health — to ensure the safety and well-being of another person.

But no well is bottomless and no caregiver can give in a limitless manner. One can’t always be kind, on-alert, supportive, compassionate, protective, and more, without doing harm to you. In this season of giving, acknowledgment of the giving that goes on all year long can get overlooked.

As a caregiver, there are ways to cultivate a greater sense of satisfaction coupled with a culture of gratitude for the holidays, both for the person receiving care and for you.

To get a start, try these steps to help focus your actions:

Connect with people.

Holiday time is both about spending time with people we truly enjoy, but also with those to whom we feel obligated. Here’s a very specific exercise to help identify who receives your precious time during this season. Write down the names of family and friends with whom you’re likely to spend significant time this holiday season. Put a (*) by the names with whom you have a relatively simple, uncomplicated, mutually beneficial relationship. Mark an (x) by those people who make you feel uncomfortable (tense, inferior, frustrated, guilty, etc.). Ideally, would you like to spend (1) more, (2) less, or (3) about the same amount of time with each person on your list? Put a 1, 2 or 3 after each name.

Embrace the season’s activities.

We often enter into the holidays wanting to be inclusive and accommodating. Every year family and friends gather to share meals and exchange gifts. Why should this year be any different? Write down all of the activities you look forward to or anticipate doing as part of the holidays. Here are a few to help you get started: Buy gifts, decorate, make travel plans, plan and shop for holiday meals, cook, bake, clean, host guests, host grandchildren, volunteer for charitable causes, participate in spiritual or religious activities, participate in special family traditions (travel to a family gathering out-of-state, make tamales, sing at the local VA nursing home), and more. The list may sound both endless and compelling. Now revisit your list. Put a (*) by the activities that make you smile and feel content. Mark an (x) by the activities that you do not have time to fully enjoy, or that seem to have lost their meaning or become a burden for you, the person you care for, or your family.

Cultivate a sense of goodwill towards yourself and others.

At this time of year there is more pressure to appear happy and joyful. Feeling and expressing your true feelings, especially if these truths appear negative to others, can be discouraged and seen, at the least, as not acting in the spirit of the season. Here are some of the feelings that family caregivers have expressed to us, as well as some from those on the care receiving end of the relationship. See if any of these fit for you: ambivalence, anxiety, anger, boredom, embarrassment, exhaustion, frustration, forgotten, happiness, hopeful, grateful, grief, guilt, impatience, irritability, jealousy, loving, loneliness, loss, peaceful, resentment, sadness, satisfaction, scared, thankful, tired, worried, zapped, and zestful. List any other feeling you know to be true for you. Now put a (1) by the feelings that get in the way or disrupt your life, a (2) by the feelings that just are there but don’t really get in the way, and a (3) by the feelings that you want to cultivate to feel more often.

What is doable and what reflects wishful thinking?

To complete this exercise, draw a line down the middle of a piece of paper. On the left side of the page note your 1s from the first exercise, now write down the (*)s from the second exercise, and add the 3s from the third exercise. List the remaining items on the right side of the page. When you have finished scan your lists. What steps can you take to include more of the people, activities, and feelings from the left side of the page into this holiday season or the near future? What items reflect wishful thinking but more realistically represent something to hope for some time in the future?

Here are few examples of actions to take this season:

Give the gift of listening.

Putting everything else aside to focus your full attention on a loved one. Just be present, listening to them tell you a story or share their thoughts; ask questions about the origin of family stories and rituals, share a chuckle over past adventures.

Communicate gently but honestly.

Tell the person you care for or the person who cares for you, sensitively but honestly, what you need and how you would like to meet that need. It’s better than speaking angrily or resentfully with the person you care for. Sometimes you might just need some time away from the care situation. Try these suggestions for communication with someone living with brain impairment.

Revisit expectations.

If you are caring for a family member living with moderate to severe PTSD or Alzheimer’s disease, making heroic efforts to include your relative in a holiday gatherings can be tense and exhausting. Sometimes it can work wonderfully when family members and friends pitch in so that you can take a break to enjoy yourself. But, too often caregiving tasks and anxiety about actions by the person can drain any enjoyment from your time at the event. Encourage family and friends to spend time with your family member with dementia by visiting the person where they live, rather than at loud, busy family gatherings. A smaller gathering in more familiar surroundings gives visitors and hosts a much greater chance for meaningful time together. Here are more tips for navigating dementia care during the holidays.

Cultivate gratitude in your life.

What would it feel like to focus more of your thoughts on what is good in life? If you have time, consider keeping a gratitude journal, writing down a few items each day. Reading just a few sentences from your journal before you go to bed and when you wake up can help you to focus on the good in your life. As a way to communicate within the family, some people create a “gratitude bowl” where everyone in the household jots down things they are grateful for on a slip of paper and places them in the container. Read a few of the slips out loud each day when you’re together at meal time or post a gratitude note on the refrigerator.

Navigating the holidays on top of all of the other daily activities of life for those living with chronic illness can be fraught with frustration and a sense of disappointment. Giving thought to what is truly important for you and your family, while taking steps to communicate your interests to others can open up opportunities for you to have a less stressful and more satisfying season.

Five technologies for caregivers, including a lock, GPS tracking, and medication dispenser

Five technologies are described in this blog post from today’s “The Caregiver Space” ( See:

The technologies include:

* product called Smart Lock

* Kenguru Car for those in wheelchairs who want to be able to drive

* medication dispenser (specifically one called Hero)

* GPS tracking

* alert device

It might be the early morning hour but I didn’t think the Kenguru Car description was very good.  In any case, it’s probably not applicable to many situations for those in our group.


Healthy aging talk by Stanford geriatrician (lots about sleep and over-medication)

Despite the fact that this email is about a talk given at a caregiver conference, there is nothing caregiver-specific about this email.

The Avenidas Senior Center Caregiver Conference was in late October 2017. Brain Support Network volunteer Denise Dagan attended the conference and shared notes from several of the talks a few weeks ago. One highlight was the talk by Stanford geriatrician Mehrdad Ayati, MD. The title of his talk was “Caregiving for Your Immune System.” Denise says “Dr. Ayati included some exceptionally useful information everyone should know about sleep.”

Denise’s notes are copied below.



Notes by Denise Dagan, Brain Support Network Volunteer

Speaker: Mehrdad Ayati, MD, geriatrician, Stanford University
Topic: Caregiving for Your Immune System
Avenidas Senior Center Caregiver Conference
October 21, 2017

Longevity doesn’t ensure a good quality of life.

Healthy aging doesn’t mean more pills, more doctors, more tests, and more supplements.

In studies of long-lived populations, the most important factors contributing to longevity was:

– Environment (safety and security, including socioeconomic status)
– Nutrition (influenced by finances, education)
– Lifestyle (very social societies with tight family and friendship bonds tend to live longer)
– Luck
– Disuse (lack of exercise and mobility)
– Genetics (only 25% influential on longevity)
– Disease (vaccinations, exposure to air/water/food/insect born illness)

The biggest thing doctors can do to help someone age well is to get them to modify their lifestyle. Doing that involves the same advice given to all caregivers:

– Exercise
– Have good nutrition
– Stimulate your brain (learn something new every day and be social)
– Stay up to date with your own health maintenance
– Get good sleep

Physical evidence of aging at the cellular level is the length of our telomeres (the tips of our chromosomes). Telomeres shorten with each cell division. If/when telomeres become too short the cell dies.

A 2013 study looked at study participant’s genes at the beginning and end of a 3-month period of improved diet, exercise and socializing. They found an increase of telomere length in that short a period, which correlates to healthier aging and overall lower cancer risk.

Sleep is a huge factor in maintaining our health and wellness. Adults should get 6-8 hours of sleep. Normal sleep goes through four stages in 90-110 minute cycles. Sleeping pills interfere with these cycles. Restorative sleep is in stage 3, just before the REM stage (Rapid Eye Movement, which is when we dream). There is actually 20% more brain activity during REM sleep than when we are awake.

There are two proteins that influence our sleep:

Adenosine – a product of muscle use, it builds up throughout the day and as it increases in quantity you become sleepy. This is why doctors recommend exercise to improve sleep. Note: Caffeine blocks adenosine receptors in the brain, preventing adenosine’s access to the brain while caffeine is present. That is why caffeine keeps you awake.
Melatonin – part of our circadian rhythm (day/night awake/sleep cycle). It builds up as a result of sunlight exposure through the eye. That exposure can be restricted by cataracts, retinopathy, stroke, Alzheimer’s, and more, resulting in sleep disruption. Wearing sunglasses in the late afternoon also restricts sunlight exposure at a critical time of day and can disrupt sleep.

Sunlight exposure and exercise can reduce agitation and help sleep for those with dementia.

Sleep is a restorative, regenerative time. During sleep the glymphatic system clears byproducts from the brain, including adenosine. If you don’t sleep well, you wake sleepy because adenosine is still present in the brain.

During sleep the brain migrates short term memories from the hippocampus to long term memory. This process doesn’t happen when sleeping pills disrupt your sleep cycles.

Dr. Ayati shared a circadian rhythm and sleep cycle chart with us showing when melatonin begins to affect our sleep, the fluctuation of blood pressure and heart rate throughout the day and night, etc. Click on this link to see the chart:

In people from middle age to the elderly it is normal to wake early and sleep early.

Teens typically have about a 2 hour delay from adults, so they sleep later and wake later. Early morning sunlight exposure may offset that delay and bring their sleep/wake times earlier. About 10% of teens have sleep disorders later in life.

The invention of the lightbulb allowed people to stay awake past darkness, when it is normal for us to be sleeping. More recent technologies (screens) further influences our sleep/wake times leading to increased rates of diabetes and obesity. We don’t get enough sleep because we use technology after dark, and we eat late, after our circadian rhythm has reduced our digestive activity for the night.

Over-medication is also a huge problem, especially due to medication interactions. Doctors tend to prescribe according to protocol, sometimes without thinking, “Does it make sense to prescribe a preventative medication to an elderly patient?” Statins, for one, don’t make any sense to start in someone who’s already 80 or 90 years old.

The effect of medications on the elderly is largely unknown because the elderly usually don’t participate in drug trials. When a new medication is released to the market doctors don’t even have anecdotal evidence (yet) of how well it will work for an elderly person or if it will interact badly with other medications.

Drug Cascade Syndrome – One example:
A patient complains about not sleeping well. His doctor prescribes a sleeping pill. The sleeping pill causes lack of energy and motivation. The doctor prescribes an antidepressant. The antidepressant causes weight gain. The doctor prescribes a statin and blood pressure medication.
If the doctor had taken the time to investigate more and implore the patient to change his lifestyle, the patient wouldn’t now have metabolic syndrome.

Maintaining good mental health and cognition goes a long way toward healthy aging, also. Dr. Ayati recommends learning or doing something challenging to our brains. We didn’t used to think that the brain could develop new pathways. In fact, now we understand that we only lose neurons faster as we age because older people have less activity, more anxiety, more depression, and less learning than young people who are in school, launching careers, rearing children, and more physically active.

In fact, one study found that taxi drivers in London have the largest hippocampus (short term memory center) in the brain. They have to adjust their routes depending on construction, traffic, passenger demands, etc., whereas bus drivers who follow a route set at the beginning of every day, did not have large hippocampus.

So, get out there! Move as much as you can (without hurting yourself) and learn something, volunteer, be sociable, and age healthfully.

“The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies”

This is a good article from Kaiser Health News ( about anticipatory grief:

Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

Suggestions for coping including:  acknowledge your feelings, talk opening, communicate sensitively, lean in, and seek support.


Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

For years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.

Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.

This pileup of complex emotions is known as “anticipatory loss.” “The deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn’t built into the health care system,” said Dr. John Rolland, professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Families, Illness and Disability: An Integrative Treatment Model.”

Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:

Acknowledge Your Feelings

 Grief starts the moment someone with a serious illness receives the diagnosis,” said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn’t stop there. Each time a capacity is lost — for instance, an older adult’s ability to negotiate stairs, to drive or to manage household finances — sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to “normalize them, because people don’t understand that everyone goes through this.”

Talk Openly

When families avoid talking about an aging parent’s frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.

“My view is, you’re better off trying to get through whatever you’re facing together,” Rolland said.

When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they’d like to discuss but don’t. “Usually, there’s about a 75 percent overlap, and it’s a tremendous relief to most people to find out they don’t have to keep things locked up inside,” he said.

“People who are facing serious illness think about what might lie ahead all the time,” Rolland said. “For a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn’t helpful.”

Communicate Sensitively

Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.

“People with these conditions aren’t the same as they were before, but it would be heartbreaking for them to know that you didn’t see them as the same person,” she said. “So, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.”

 In her practice, Marks asks “people to share what each person is going through and not worry about protecting each other from what they’re feeling,” she explained. “Because protecting each other leads to feeling more alone and magnifies the feelings of loss.”

For a caregiver of someone with dementia, that might mean saying,“Sometimes you might see a look crossing my face and think that I’m disappointed. It’s not that I’m upset with you. It’s that I’m sad that there are things that happened in our past that we don’t remember together.”

For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who’s disabled.

Lean In

How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who’s frail or ill, and the nature of that person’s condition.

“Sadness can make you cherish a person even more and appreciate small moments of connection,” said Barry Jacobs, a Pennsylvania psychologist and co-author of “AARP Meditations for Caregivers.”

Some people, however, can’t tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.

If possible, lean in rather than letting yourself become distant. “Cherish the time that you have together,” Jacobs said. “Rather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.” In the end, connection eases the pain of grief, and you’ll be glad you had this time with the person.

Seek Support

“Don’t confront grief alone or in isolation,” said Alan Wolfelt, founder and director of the Center for Loss & Life Transition in Fort Collins, Colo. “Have people around you who are supportive and who will be present for you” — family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.

Ultimately, this journey will help shape how you ultimately experience a loved one’s death.

Wolfelt describes mourning his mother twice. “The day she was diagnosed with Alzheimer’s and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.”

But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family’s decision not to pursue further treatment. “It was OK that she died because she was ready — she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation.

Questions to ask a potential agency caregiver

The Parkinson Foundation ( has a useful worksheet on questions to ask an agency caregiver during the hiring process.  Though the worksheet is published by the Parkinson Foundation, there is nothing Parkinson’s-specific about the worksheet or questions.

As the worksheet says:

Hiring someone to take care of your loved one is a decision that must be made with careful consideration. There are many questions you can ask to make sure the agency can meet your needs, as well as questions to make sure the agency and its employees are competent and have the proper training,
licensing and insurance.

Here’s a link to the worksheet:



Negative Results with TPI 287 in CBS and PSP

A local support group member whose loved one was involved in this TPI 287 trial at UCSF contacted me a couple of weeks ago to say that she had learned that the trial was not successful.  I haven’t been able to find any independently-written article [see updated below!] on the study results (and, of course, shows nothing) but there is this pharmaceutical company press release.

The TPI 287 study was discussed by Adam Boxer, MD, UCSF at our recent PSP/CBD conference.  This was a phase 1 study, which has a safety focus.  Researchers are also trying to learn something about efficacy during these studies but that’s not the main point.  In the study, 14 patients with PSP and 30 patients with CBS were included.  32 received the drug and 12 received the placebo.

This seems to be the crux of the problem — “Interestingly, patients treated with TPI 287 performed worse on the [Clinical Dementia Rating] assessment vs. placebo after 12 weeks.”

Update:  A member of our email list forwarded me that independent write-up I was looking for on TPI 287; it’s on Alzforum. Just as the group member said, the trial had negative results. In addition to the worsening in the dementia rating scale (mentioned earlier today), there was also a worsening of falls in CBD and PSP patients. The study was also conducted of the same compound, TPI 287, in Alzheimer’s Disease. The experimental drug was not safe in AD patients at high doses. An excerpt from the Alzforum summary is below.

Excerpt from
At Least We Know These Don’t Work: Negative Trials at CTAD
15 Dec 2017

Adam Boxer, University of California, San Francisco, presented his center’s Phase 1 trial of TP1 287. Also known as abeotaxane, this small-molecule taxol derivative stabilizes microtubules. TPI 287 accumulates in the brain, and has been tested primarily to treat central nervous system tumors. Its application to tauopathies grew out of work showing beneficial effects of the microtubule stabilizer epothilone D in tau transgenic mice (Zhang et al., 2012). Testing of epothilone D in AD patients started in 2012 but was discontinued for lack of efficacy.

Boxer’s group examined the safety and tolerability of TP1 287 in 44 people with the primary four-repeat tauopathies cortical basal degeneration (CBD) or progressive supranuclear palsy (PSP), and in 33 people with AD. Participants received abeotaxane by intravenous infusion once every three weeks for nine weeks, with an option for open-label extension up to three months.

In recruiting for the CBD cohort, Boxer screened with amyloid PET to exclude people with AD and to limit the treatment group to people with pure tau pathology. Of 55 diagnosed with CBD, Boxer excluded seven based on positive amyloid scans. He also used CSF biomarkers to confirm diagnoses: AD patients had lower Aβ42 and higher total tau and phospho-tau levels than CBD/PSP group members, who showed elevations in neurofilament and a higher neurofilament light (NfL)/phospho-tau ratio than the AD group.

Participants received tailored doses of 2, 6.3, or 20 mg/meter2 TPI 287, or placebo.

AD patients tolerated the treatment poorly. Boxer told the CTAD audience that he had to stop the high-dose arm because two participants suffered anaphylactoid hypersensitivity reactions, most likely to the diluent for the active compound. In all, seven people in the AD group discontinued treatment. Curiously, the CBD/PSP group tolerated the drug well, even at the highest dose. They suffered no hypersensitivity reactions, and most participants stuck with the trial even through the open-label extension. However, in CBD and PSP patients, the drug caused more falls, a serious concern.

On the exploratory cognitive endpoints, the researchers saw a hint of stabilization of MMSE scores in the AD group, but no change in the ADAS-Cog, and the CBD/PSP cohort had a dose-related worsening on the Clinical Dementia Rating-Sum of Boxes at three months.

Boxer has no future plans for the drug, except to complete the analyses of pharmacokinetics and MRIs. He told Alzforum that investigators learned a lot from the trial. “It shows the importance of testing potential treatments in different tauopathies,” he said. “Animal models don’t tell the whole story, and we have to look at different conditions in humans,” he said.


Important Research – First Genome-Wide Association Study in DLB

This is a good summary from Alzforum about research published last Friday out of two of the world’s largest brain banks — the University College London and the Mayo Clinic Jacksonville.  Researchers genotyped 1743 patients — 1324 of those patients had autopsy-confirmed dementia with Lewy bodies.  They were looking for genome-wide associations in dementia with Lewy bodies (DLB).  Basically, they were trying to answer the question — how much of DLB can be explained by genetics?

This breakthrough research was made possible through brain donation.  Our nonprofit, Brain Support Network, has helped over 450 families with brain donation.  All of those families we’ve helped where the diagnosis was confirmed DLB were involved in this important research!  Please let us know if this is interest to your family and we can help make advance arrangements.

“The researchers calculated that, overall, genetic variants account for about 36 percent of the risk for DLB in this sample. This is roughly the same as for PD, but much less than that for late-onset AD.”  Previously-known associations were confirmed — APOE, SNCA (synuclein), and GBA.  “The APOE locus emerged as the most strongly associated with DLB, with the SNCA gene for α-synuclein next. Interestingly, though, the particular SNCA SNPs were different from the ones associated with PD.”  A new loci was discovered — CNTN1.

The study was funded by two UK organizations — Alzheimer’s Society and Lewy Body Society.

Here’s a link to the Alzforum summary:

First Genome-Wide Association Study of Dementia with Lewy Bodies
15 Dec 2017

And MedicalXpress had a good summary of the research as well.  Here’s a link to that as well:

Dementia with Lewy bodies: Unique genetic profile identified
December 15, 2017