“And how are you (the caregiver) doing?”

A member of the BSN support group directed me to an article in the Los Angeles Times explaining one view of the value of caregiver support groups. The article addresses caregiver stress and topics discussed at support group meetings. The reporter interviews Patti Davis, daughter of Ronald Reagan.  Reagan was diagnosed with Alzheimer’s disease. Though this article focuses on Alzheimer’s caregivers, very little of the information is limited to the Alzheimer’s world.

See www.latimes.com/health/la-he-patti-davis-alzheimers-support-20160416-story.html

You’re taking care of someone with Alzheimer’s, but who is taking care of you?
by Rene Lynch
April 16, 2016
Los Angeles Times

Here’s one short excerpt:  “Caregiver stress is a very real thing. … The caregivers are the ones that worry about the future and worry about the past and worry about the present. They’re constantly worrying about finances, what is going to happen next, it never lets up. But they feel like, ‘I don’t have the disease, I’m not entitled to the attention.’ They start to feel less important, less significant. On an airplane, when they give you the lecture about the oxygen mask, you’re told to put on your own mask first before you help a young child or the elderly or the disabled. And I use that analogy a lot. Caregivers have to take care of themselves first. They are entitled to have their feelings understood and nurtured and discussed.


“A Cautionary Tale of ‘Stem Cell Tourism'”

Here’s a worrisome article from yesterday’s New York Times about the harm one person received from stem cell therapy in Mexico, China, and Argentina as a “treatment” for a stroke.  A neurosurgeon found a “huge mass with someone else’s cells growing aggressively in [the person’s] lower spine.”

Some in our local MSA support group have tried stem cell therapy in China and Germany.  In general, we’ve heard that this therapy was not helpful.  Perhaps their loved ones didn’t live long enough to experience these problems?

Find the full article here:  www.nytimes.com/2016/06/23/health/a-cautionary-tale-of-stem-cell-tourism.html

New York Times
A Cautionary Tale of ‘Stem Cell Tourism’
By Gina Kolata
June 22, 2016


“4 strategies for communicating successfully with an aging parent”

This blog post on Care.com offers four strategies for communicating successfully with an aging parent.




Caregiving Conversations
4 strategies for communicating successfully with an aging parent.
Posted by Jody Gastfriend

Clara always had a contentious relationship with her mother, whom she found controlling and critical. But Clara’s mom, once so strong-willed and stubborn, was becomingly increasingly frail.

Is talking about the needs of our aging parents uncomfortable? You bet it is. Topics such as money, health status, end-of-life care and driving are often emotional land-mines for both parent and child. How do we deal with this distress? Instead of acting like adults, we revert to childish techniques: we walk on eggshells, beat around the bush, or avoid uncomfortable topics altogether. For our parents, these subjects stir up fears of losing autonomy and control. For us, these topics ignite our own sense of vulnerability and sadness.

What’s the result? Many baby boomers, accustomed to their to-do lists and action items, treat the conversation as a fait accompli: “Mom, I’m concerned that you’re not safe at home. So I’ve researched assisted living and I think it’s best for you.” Does this work? Nope. This approach is often met with denial and resistance.

So what did Clara do?

“When I initially broached the subject of my mother needing help at home she scoffed. I was frustrated and told her she was being stubborn, as usual. But after consulting an elder care expert, I approached the subject differently. This time, I was coming from a place of concern and love. This conversation went differently. My mother confided that she was profoundly afraid of becoming dependent on me. She dreaded how that would affect our relationship. So we worked out a plan to hire caregivers to assist my mother at home and for me to come by on weekends to help out.”

Clara realized she had more success approaching her mother in an empathic and sensitive manner rather than starting the conversation with her own worries and fears. In reality, “the conversation” is a series of discussions. It takes time to learn what our parents’ wishes are as they age.

Here are four ways we can communicate better and ensure that our loved ones get the best care possible:

1. Form a Team
If you have siblings, discuss your concerns together before broaching the subject with your parents. Hear each other’s perspectives with an open mind and come up with a plan to hold a family meeting. Agree to communicate as a unified front. Letting conflicts simmer to the surface will only derail your efforts. (Learn how to navigate the 3 senior care issues siblings fight about most.)

2. Research Options Ahead of Time
Pave the road before you begin your journey. Learn about community resources — local area councils on aging, senior centers and home care agencies. Research different types, costs and availability of care — be informed about what choices are most realistic for your parents’ needs. (See what senior care costs in your area.)

3. Seek Professional Expertise
If you fear your mother is showing signs of dementia, ensure that she have a thorough medical evaluation for dementia. If you are unsure of whether your father is eligible for Medicaid, consult with an elder law attorney in the state where your Dad resides. If you need help sorting out the options for care, seek the expertise of a geriatric care manager (typically a social worker or a nurse), who can help guide you and your family through the caregiving process. (Understand the importance of hiring an elder care lawyer.)

4. Learn to Back Off
Might you tend to be too forceful in your approach? Who could blame you for trying…but it would be a shame to let the struggle for control eclipse your well-intended efforts. It may be painful to bear witness to your parents’ bad decisions. But they have the right to make them, unless they are deemed medically incompetent or a danger to others (with, for example, unsafe driving). Resistance is common, and the best way to address it is through understanding, patience, and even humor! (Get tips for talking to your parent about driving.)

As you experience both the challenges and rewards of caregiving, remember that your parents remain your parents. Even as they grow more infirmed and dependent with age, remember their role as your initial caregivers. Ongoing communication — before a crisis ensues — is one of the most important strategies. With these thoughts in mind, it’s easier to respect and honor your parents’ wishes and continue to support them, even as they face the fragility of old age.


“9 Strategies to Help a Parent Who Refuses Care”

This is a terrific article offering nine strategies for helping a parent who refuses care.




9 Strategies to Help a Parent Who Refuses Care
Posted by Elizabeth Pope

What can you do when your mom or dad won’t accept needed assistance?

Your mother resists in-home helpers, insisting you can wait on her. Your frail father won’t stop driving. Your aunt denies the need for a personal care aide, in spite of her unwashed hair and soiled clothes. Your grandmother refuses to move to an assisted living facility “because it’s full of old people.”

Sound familiar? Nothing is harder for a family caregiver than an elder loved one who refuses needed help. “This is one of the most common and difficult caregiving challenges that adult kids face,” says Donna Cohen, Ph.D. a clinical psychologist and author of “The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders.”

Before pushing your mother too hard to accept help, try to understand her fears about aging, says Cohen: “Many older people see themselves as proud survivors. They think ‘I’ve been through good times and bad, so I’ll be fine on my own.’ Plus, they don’t believe their children understand the physical and emotional toll of age-related declines.”

A senior in the early stages of cognitive impairment may be the most difficult to deal with. “Your angry father or agitated mother is aware of this miserable change in their brain they don’t quite understand,” Cohen adds. Calm reassurance will help them cope with a frightening loss of function.

It’s normal for family caregivers to experience rage, helplessness, frustration and guilt while trying to help an intransigent older loved one, says Barbara Kane, co-author of “Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children.” “You may revert to the same coping mechanisms you had during adolescent power struggles with your parent — screaming, yelling or running out of the room,” she says. “You need to understand what parental behaviors trigger your emotional response and realize you have other choices.” (And Kane advises considering seeing a therapist yourself if necessary to deal with a difficult parent.)

Here are nine strategies to help you overcome the objections of a recalcitrant loved one:

1. Start Early
Ideally, families have relaxed conversations about caregiving long before a health crisis. Look for opportunities to ask questions like, “Mom, where do you see yourself getting older?” or “How would you feel about hiring a housekeeper or driver so you could stay home?”

2. Be Patient
Ask open-ended questions and give your loved one time to answer, says Care.com Senior Care advisor Mary Stehle, LCSW. “You can say, ‘Dad, what’s it like to take care of Mom 24 hours a day?’.” But be warned: Conversations may be repetitive and tangential, veering off-topic. It may take several talks to discover the reason your mother, a meticulous housekeeper, has fired five aides in a row is simply that they neglected to vacuum under the dining room table.

3. Probe Deeply
Ask questions to determine why an elder refuses help — then you can tailor a solution, says Kane. “Is it about a lack of privacy, fears about the cost of care, losing independence or having a stranger in the house?” says Kane. To build trust, listen with empathy and validate rather than deny your loved one’s feelings. (Learn more about starting a conversation about care with your parent)

4. Offer Options
If possible, include your parent in interviews or in setting schedules, says Stehle. Let them choose certain days of the week or times of day to have a home health aide come. Emphasize an aide will be a companion for walks, concerts, museum visits and other favorite activities. (Find a senior care aide.)

5. Recruit Outsiders Early
“Sometimes it’s easier for a parent to talk to a professional rather than a family member,” says Cohen. Don’t hesitate to ask a social worker, a doctor or nurse, a priest or minister — even an old poker buddy — to suggest your parent needs help.

6. Prioritize Problems
Make two lists, says Cohen, one for your loved one’s problems and another for the steps you’ve already taken — and where to get more help. “If you don’t categorize your efforts, caregiving becomes this huge weight,” says Cohen. Writing it down and numbering by priority can relieve a lot of stress.

7. Use Indirect Approaches
If your father has dementia, offering less information may be more effective at times, suggests Stehle. “You could let your parent know the aide is someone very helpful who can take your father on walks, fix him meals, and help him throughout the day. You don’t need to explain every aspect of care the aide will provide before the relationship has been formed. This may make your loved one feel less threatened.”

8. Take it Slow
Weave a new aide in gradually, says Kane. Start with short home visits or meet for coffee, then bring the aide along to the doctor’s a few weeks later. “You leave early on some pretext, letting the aide accompany your parent home.”

9. Accept Your Limits
As long as seniors are not endangering themselves or others, let them make their own choices, says Cohen. “You can’t be at your parent’s side all the time. Bad things can happen, and you can’t prevent them,” she says. “You need to accept limits on what you can accomplish and not feel guilty.” It may sound unfeeling, but maybe going a day or two without meals is just the reality check an elder needs to welcome a badly needed helping hand.


“Soapbox” suggestions for caregivers from Bill H. (of Atlanta)

My longtime online friend Bill H., of Atlanta, lost his wife about a year ago. We thought she had CBD. I encouraged Bill to arrange for an autopsy to be done by Emory, with the hope that some of the brain tissue will find its way to research. (Emory doesn’t publish its own CBD or PSP research.) Turned out that Joan had a form of frontotemporal lobar degeneration that couldn’t be classified.

Anyway, a couple of weeks ago Bill shared with me that he attends his local atypical parkinsonism support group meeting and regularly shares some “soapbox” suggestions for caregivers. His ideas are below.


From Bill H. of Atlanta, GA
Email to Robin in early June 2016

As you might imagine, I have some soapbox issues to share with the new, dazed caregivers who keep showing up. It takes time for new caregivers to be ready to hear some of these things.

  • Take care of the caregiver — ask for help. Even if you are calm, compassionate and tough, care giving puts relentless stress on your body, mind and soul.
  • No matter how difficult it is, talk with your loved one about end of life issues, wishes, preferences. Do this sooner, rather than waiting until it is too late in the progress of the disease.
  • Do the documentation: update wills, advance directives, funeral preferences (have copies readily available)
  • No matter how difficult it is, have meetings and discuss the situation with family members (include close friends where appropriate) so everyone is on the same page. We made this easier by dealing with end of life desires of patient and spouse (mother’s and father’s, in our case) at the same gatherings.
  • In Georgia we have what I call a “short form advance directive”, the POLST form (Physician Orders for Life Sustaining Treatment). It has three signature lines: Patient, Patient’s Authorized Representative, and Physician. Fill it out, get it signed, stick it on the refrigerator, give it to the paramedics or take it to the hospital.
  • It matters little what the clinical diagnostic acronym is (MSA, PSP, CBD, ?), most of the care providing will be the same activities.
  • Consider brain donation for research purposes — get names, telephone numbers of donation coordinators, fill out forms, stay in touch with the institution. [Note from Robin to Bill: This is a primary activity of Brain Support Network. Learn about our process.]
  • You have to become educated about the brain disorder(s) and teach health care providers about the rare condition your loved one is experiencing and the expected decline in their abilities function normally. One mention is not enough, you have to train them.

“What I wish someone had told me in the beginning” (from Alzheimer’s daughter)

This email will be of most interest to caregivers.

As you might imagine, I scour the online support groups when I get a chance, looking for good articles or tips to share.  I saw this post made last week by a woman whose father has Alzheimer’s, and a follow-on post by a woman whose mother has Alzheimer’s.  The post is titled “what I wish someone had told me in the beginning.”  Though I found this on an Alzheimer’s-focused online support group, I think several of the suggestions are applicable to those in the Brain Support Network group.


“What I wish someone had told me in the beginning”
Posted by Sharon909 on AlzConnected.org’s Caregivers Forum
Wednesday, June 8, 2016

1) Make sure SOMEONE goes with your loved one to all doctor appointments. My father would ‘forget’ medication changes or instructions before he left the room, and then argue with me about it.

2) Make sure to log all of their medication, what they are for, how they are spelled, and what the dosage is. Put it somewhere where it can be found in case there is an emergency and paramedics need the info. Keep a copy for yourself in case you have to answer questions by phone. People with this disease tend to ‘hide’ their medications and when there is an emergency there wont be time to search the house for the bottles. My father had duplicate medications and was taking brand and generic of the same drug and ended up in the ER several times before I realized why.

3) Make sure to have the doctor notify the MVA [motor vehicle authority]. They will schedule your loved one for a re-test. If they fail they will revoke their license. Its scary when they get lost driving to the store or forget the rules of the road. And it helps for the government to be the bad guy, and not you.

4) Find an Elder Law Attorney. Take your loved ones to visit them while you are with them. Have a power of attorney done (making sure it gives you all the powers to gift funds and act on their behalf on all matters! Mine is a dozen pages long!), advanced medical directive, DNR, etc.

5) Have the attorney review their financial status. If at ANY point they may have to file for medicaid, the attorney can help transfer assets into a family account now, to protect it from being seized in the future.

6) Have your family discuss caregivers now. The further along the disease progresses, the less agreeable they will be to letting some stranger in the house to help with cooking, cleaning, driving, errands, medication management, etc. Even if you only start with 3 hours a day, one day a week, try to get something in place. I had to tell the caregiver to pretend they were a neighbor coming to visit. They sat on the porch and just talked for a few hours to chat and report back on anything that seemed alarming.

7) Have copies made of EVERYTHING in their wallet.

Order a duplicate license, SSN card, insurance cards, credit cards, etc. As the disease progresses, they will HIDE their stuff and then lose it. They will accuse everyone of stealing it. But you will need their ID and insurance cards for everything so its best to keep it safe. I let my father keep expired bank cards, empty gift cards, a checkbook to an old closed account, and his license and insurance card. But when it was time to go somewhere, I knew I had the right stuff.

9) Start purchasing items to secure the thermostat (my father would have the A/C and the furnace on at the same time). Get an ‘easy’ remote control (my father would press every damn button and we would spend hours trying to get the TV right again). Have the hot water tank temperature adjusted so they don’t scald themselves (my father wrote on the wall AND on the sink with red sharpie marker “hot” and ‘cold”. So don’t let her have any sharpies! lol.)

10) Have them agree to put any fine jewelry or valuables in a safe deposit box, or a fire safe (with extra keys) or distribute to family members now. My father hid his cufflinks in his shoes and his USMC medals in the cereal box. We almost threw them away!!

11) If they have a pet, get autodispensers for food and water.

12) Put everything on a surge protector and remove questionable appliances from the house. My father had a house fire because he plugged in an old space heater and forgot to turn it off.

13) Go around the house and take pictures of everything. If there is a robbery or fire, you will more easily submit a claim.

14) Notify the neighbors, the bank manager, the sherriff’s department, the pharmacy manager, the accountant, and anyone else your loved one may call to let them know what is going on. My father called 911 for everything and the pharmacy manager would call me whenever he tried to refill a prescription on his own.

15) Remove all firearms from the house. This seems obvious but when your loved one is military, its not an easy task. My father called the police and told them I stole his guns, but when I explained his dementia they thanked me for being safe.

Comment Posted by Jo C.

I would also add that it is best to find their birth certificates, marriage certificate, any divorce papers from prior marriages if there were any; any military papers including their discharge papers and the deed to their house, registration to any vehicles, insurance plan certificates including homeowners insurance policy; long term care insurance policies burial insurance polices, bank statements, original Trust documents; Wills; DPOAs, HIPPA Waivers; etc,

If there is no diver’s license, take their State ID; if they do not have a State ID; have them go to DMV and get one. NOTE: In some areas, if the person is unable to leave the home or if it is a taxing effort for them, DMV will send someone out to the house to take the photo and have papers filled out. Great service and used it for my parents. In our state, Medicaid wanted either a driver’s license copy or a photo state ID.

I also had as much as I could in their bills put to automatic debit including insurance policy payments so they would not go lapsing. I eventually took over all finances and bill paying, but we had to start low and go slow.

Excerpts from “Ten Thousand Joys, Ten Thousand Sorrows”

This email may be of interest to caregivers.

Many people over the years have recommended the book “Ten Thousand Joys, Ten Thousand Sorrows” by Olivia Ames Hoblitzelle. The subtitle is “A Couple’s Journey through Alzheimer’s.” Recently one of our longtime CBD group members, Charmaine, put together some excerpts from the book that resonated with her during her journey with her late husband Eli. I’ve copied those excerpts below.


Excerpts from
Ten Thousand Joys, Ten Thousand Sorrows: A Couple’s Journey through Alzheimer’s
by Olivia Ames Hoblitzelle

I found myself keeping so busy, that I couldn’t feel what was really happening.

The threads of connection are pulling apart, as we slowly began to disengage from each other, and he was slowly disconnecting from the world around him.

The tug of pain would come unexpectedly, which felt like being ambushed from the unknown.

It was sometimes hard to keep grief from spiraling into depression.

I was aware of his dependence upon me. I was his grounding in a groundless reality. I was the word finger, the one who intuited the lost train of thought, who held the structure of his days. No wonder his dependence felt so heavy. After years of sharing together, I felt he was tugging at the core of my being, and I could feel his vulnerability.

I feel distracted, preoccupied, irritable, forgetful, like living in another state of mind, sometimes feeling very present, but other times, disconnected, distant, and adrift.

Our lives are changing and our relationship is changing. Our relationship, even with the love, is disengaging slowly from its old form. We increasingly lived in worlds that were drifting apart.

I realized that I can’t do it all, and I need helpers. I am totally with him, even when I leave sometimes to lead my own life.

I often felt burdened by the responsibility of being the caregiver on this journey. Gradually, a deep level of acceptance replaced doubts and struggles. I was committed to live the years as consciously and lovingly as possible. There were cycles of discouragement, fatigue, determination, and then acceptance, in spite of the challenges. I knew that along with the most difficult harrowing times, there would be lessons and some hidden treasures.

I was being forced to grow in new ways. I needed to look beyond the outer appearance of what was happening and see what lessons were hidden in the hard times. I deepened in love in ways I couldn’t have imagined. I learned that compassion for myself, and for others could embrace anything, even death.

Sometimes I felt as if my heart was breaking open with my feelings for him. Along with the grief and challenges, unseen blessings were woven through the complexities. The love kept deepening with the adversity, and that was the gift of the journey.

Our experiences are always teaching us, as incentives for growth. It can help to develop peace and strength. If you are peaceful, you can have strength.

How is it possible to “feel” in the midst of difficult circumstances? This means the level of reality is a dual level. Relative reality is the world, as we know it. Absolute reality is unconditioned, free. We have glimpses of that in the presence of death.

Suffering comes from resisting the constant flux of experience. Mindfulness can lead us to a peacefulness that is not dependent upon our experience. Willingness to see deeply, without resistance, the truth of the moment, in the absence of our habitual triggers and reactive hooks to the challenges of life can help us to more wisely decide how to act, and when to take a stand.

Aging is not the demise of your body, but the harvest of your soul. It can be a time of great strength.

Scientific American article on PSP research as a “backdoor” to Alzheimer’s

Very longtime group member Sam M. emailed this to me yesterday. It’s a nice article in yesterday’s “Scientific American” about how PSP is providing a backdoor to Alzheimer’s research.

Both PSP and Alzheimer’s are tauopathies but PSP is a “pure” tauopathy. So, if we can solve the problem of tau in PSP, we can solve the tau problem in Alzheimer’s. Another reason PSP is of interest is because PSP’s genetic link to tau is stronger than Alzheimer’s. Further, somewhat sadly, the decline in PSP is faster than the decline in Alzheimer’s, so researchers can study a drug more quickly in PSP.

Note that researchers are interested in enrolling Richardson’s Syndrome patients. This is the type of PSP where the tau load is the heaviest and brain atrophy is the fastest.

IMPORTANT – we know about PSP’s genetic link to tau and all about Richardson’s Syndrome because of brain donation. Indeed, Sam M.’s partner donated her brain as have many, many of our group members.

These ideas have been around now for several years but it’s nice to see coverage of it in a great magazine like “Scientific American.”

Scientific American: Neurological Health
“Obscure Disease May Offer Backdoor to New Treatments for Alzheimer’s and Other Killers”
By Esther Landhuis on June 8, 2016
Progressive supranuclear palsy has become a test bed for therapies aimed at the tau protein thought to be behind many devastating neurodegenerative disorders