“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.