Jackie’s example of a letter to family/friends to help them communicate better

On Tuesday, Jackie Vandenberg, who lives in NY with multiple system atrophy, asked people to share her open letter to family and friends.  The goal of her letter is to help family and friends communicate with her better.  I think it’s worth sharing with everyone as it is not MSA-specific but person-specific.  Others may want to use this open letter as a model for their own letter to aide in communicating with your family and friends.

Dear friends and family,

I always appreciate when friends and family come to visit. I noticed
lately that some people struggle knowing how to talk with me as my
ability to communicate decreases. I have brainstormed a few things to help…

1) I enjoy socializing even though I cannot speak back. I’m interested
and am listening when others tell me about themselves. I like to hear
about how people are doing, their families, hobbies, vacations,
experiences, weekend activities, etc.

2) I wish to be spoken to as a person and an adult. Please speak to me
normally by not using slower or louder speech, or a reduced vocabulary
and sentence structures. I like to be part of the conversation by making
eye contact and being spoken to directly.

3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.

4) When we’re together you can talk or not talk, either is fine. I’m
comfortable with quiet too.

5) I use a piece of cardboard with the alphabet written out to
communicate, we call it a Ouija Board. I can point to letters to spell
out words. I need someone else to hold the cardboard and adjust it as I
go. It can take a while for me to spell out sentences so I appreciate
everyone’s patience. It’s ok if you don’t understand a word the first
few times, as Tom and Adrianne can attest to.

6) When I’m using the Dynavox communication device it’s ok to fix
letters/autocorrect for me.

7) A symptom of MSA is excessive drooling. If you’re comfortable doing
so you can use a tissue or washcloth to wipe my mouth.

8) The best way to contact me to make plans is on Tom’s cell phone
through call or text. I check my email and Facebook messenger every
couple of days and am happy to get messages there too.

I hope this list is helpful for everyone! I love having friends and
family visit and appreciate all of our time together.

With Love,

“The Happy Hours” – great idea for socialization and other thoughts from KLS

Kathryn Leigh Scott (kathrynleighscott.com) has recently published three books about caregiving —
“The Happy Hours”
“A Welcome Respite”
“Now With You, Now Without”

In January 2018, I shared Denise’s short review of “A Welcome Respite.”

In 2016, Kathryn Leigh Scott (KLS) published the beautiful book “Last Dance at the Savoy,” about caring for the love of your life through the very end. KLS mentions Brain Support Network for help with brain donation in this book. Denise’s short review of that book is posted to our blog, www.brainsupportnetwork.org/blog.

After listening to a February 2018 interview* of Kathryn Leigh Scott, I think “The Happy Hours” might be of interest to some of you. I haven’t read it yet but, in the interview, Kathryn shares the core idea of the book. In her husband Geoff’s final years — after he was diagnosed with progressive supranuclear palsy (PSP) — she was determined to make the most of his remaining time. And she was determined that neither Geoff nor she, as the caregiver, would be isolated.

KLS and Geoff instituted “happy hour” at their home. The happy hour took place in the master bedroom. She removed all signs of medical equipment or disability. She added a bistro table and chairs. There was an open door policy. Anyone could come. Geoff wore an amplification device so that his voice could be heard. Apparently these gatherings were very important to her husband as they helped him be remembered by others.

In the interview, she mentions a few other things worth sharing here. First, she says that the key is to have patience. She tried to remember that “Geoff can’t help it.”

Second, she found the role reversal of caregiving very difficult.

Third, she addressed the importance to her husband Geoff of his engaging in research. He participated in trials. And he donated his brain for research. They both participated in an environmental study of PSP.

Fourth, she recommends hospice at home. She doesn’t call hospice “end of life care” but rather “quality of life care.”

A few things were said about PSP in the interview. I’ve put some notes about that below for the PSP folks on this email list.



* https://www.youtube.com/watch?v=j4hzl7SYseA&feature=youtu.be

The caregiver-related part of the interview is basically from minute 6 to minute 22.

From minute 6 to minute 10:27, Kathryn Leigh Scott offers some general information on PSP. She describes PSP as being part of a family of five progressive movement disorders. The five are PSP, corticobasal degeneration, multiple system atrophy, Lewy body dementia, and ALS. The host of the interview incorrectly refers to these as auto-immune disorders. KLS said that 20K people a year are diagnosed with PSP in the US. PSP research is informing Alzheimer’s research.

Apathy – 3 components, case study, vs. depression, and strategies

Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia.  In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.

The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.

Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.

I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.




Excerpts from
Partners in FTD Care
Association for Frontotemporal Degeneration

Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.

What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.

How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.

Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.

Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.


“Getting Sick Can Be Really Expensive, Even for the Insured” (NYT)

This eye-opening article in today’s New York Times (nytimes.com) is of most relevance to the multiple system atrophy community as MSA often hits in ones 50s.  The article addresses how “getting sick can be really expensive, even for the insured.”

The author notes:

Among people in their 50s who were hospitalized, about 10 percent never went back to work.  Some others scaled back their hours or took lower-paying jobs.

The full article is well worth reading:


Getting Sick Can Be Really Expensive, Even for the Insured
Beyond medical costs, a trip to the hospital can mean a permanent reduction in income for many Americans, new research shows.
By Margot Sanger-Katz
New York Times
March 21, 2018



“10 Things to Locate Before Your Parent Has a Health Crisis”

This good article from last summer is about the ten things adult children should locate before a parent has a health crisis.  The ten things include:

  • Medical records
  • Health insurance and life insurance information
  • Advance directives
  • Banking information
  • Investment information
  • Deeds and titles
  • Safe deposit box
  • Hidden valuables
  • Wills, birth certificates, marriage licenses
  • End-of-life decisions

The full article is copied below.



10 Things to Locate Before Your Parent Has a Health Crisis
Knowing where information is kept can be vital in an emergency
By Candy Arrington
July 14, 2017
Next Avenue

As long as aging parents are handling their own finances and managing day-to-day living at home, adult children don’t think much about needing to know the location of their parents’ important documents. However, a parent’s unexpected health event could precipitate an immediate need to get your hands on key information and secure valuables.

Following her fall and emergency surgery, my mother insisted I go to her house and retrieve her jewelry and documents. Thankfully, she was coherent enough to provide directions. But that isn’t always the case when a parent is hospitalized. That’s why now, before something happens, is a good time to talk to aging parents about what you may need to get someday.

What You Need to Find
Initially, it may feel like an invasion of their privacy. But, as I explain in my book, When Your Aging Parent Needs Care, ask for locations of the following:

1. Medical records – When a health incident occurs, doctors will ask about existing conditions, previous surgeries and current medications. A spouse (if your parent has one) probably knows these answers, but it’s good for someone else to have the information in case both parents are ill or injured.

2. Health insurance and life insurance information – Find out where your parents keep health insurance information, including any supplemental policies, and locate their cards. Also, look for life insurance policies and make sure the premiums are up-to-date.

3. Advance directives – Your parent may have a living will, DNR (Do Not Resuscitate) order, or health care power of attorney (POA), which is different from a general power of attorney. During the last years of my mother’s life, frequent health crises prompted me to keep her healthcare POA and DNR in my car.

4. Banking information – If a parent is suddenly incapacitated, bills still need to be paid. Learn where your parents bank, and get their account numbers, online access codes, debit card PINs. Also, find out how their bills are paid (checks, auto-draft, paid online). Ask your parents to consider having your name, or a sibling’s, placed on their bank accounts so someone else has the ability to make payments and manage the accounts.

5. Investment information – Following my mother-in-law’s health crisis and death, we spent days digging through mountains of papers at her home, searching for a name and phone number for her financial adviser. Eventually, we discovered he’d left the company. It’s important to know not only the location of parents’ investments, the name of the adviser and contact information, but also to be aware of fees, required distributions and withdrawal penalties.

6. Deeds and titles – You may think the deeds and titles to your parents’ property are in that old wooden cigar box on the top shelf of your dad’s closet. But what if they aren’t? Take the time to find out the location of deeds to houses and land and titles to cars and recreational vehicles. A health crisis may precipitate a sudden move to a care facility and the need to liquidate assets.

7. Safe deposit box – While not everyone uses safe deposit boxes, your parents may have one. Learn where, locate their keys, and ask about the procedure for accessing the box. A parent may have to place your name on file in order for you to gain access. Check with the bank.

8. Hidden valuables – While most people don’t keep money in the mattress anymore, some still pick bizarre places to stash cash and jewelry. I’ve heard these examples from people I’ve interviewed: A woman taped cash to the back of her vanity mirror and hid her diamonds in the sugar tin. A man buried over $60,000 in his backyard in coffee cans. Thankfully, his wife saw him. After his death, his grandchildren enjoyed a treasure hunt with metal detectors, but the scenario could have been very different if knowledge of his secret stash died with him and the property had been sold. If your parents don’t want to divulge the location of their valuables, ask them to make a list and keep it with their wills.

9. Wills, birth certificates, marriage licenses – Ask your parents about their wills and where they’re located. If they don’t have them, or haven’t updated them in years, initiate a consultation with their attorney and offer to take them, to make sure they go. Discussing wills may seem morbid while parents are healthy, but dying intestate (without a will) lengthens the probate process and may spark family squabbles. Also, locate birth certificates, marriage licenses and veterans information.

10. End-of-life decisions – Death is a subject few want to discuss, but you may be surprised to discover your parents have already made plans. My father’s medical crisis resulted in a terminal cancer diagnosis. A few weeks later, he arranged for and “bought” his funeral. It’s a hard conversation, but ask your parents about their end-of-life preferences.

Approaching Tough Topics
Often, parents are hesitant to discuss personal matters. Pride, stubbornness, suspicion and fear mingle to produce defensiveness and resistance.

Try using someone else’s situation as a springboard for discussion. If a friend’s parent had a health crisis and the friend struggled to handle it because of lack of information, mention this to your parents. Once the subject is broached indirectly, your parents may be more forthcoming with information than you expected, making your job easier when a health crisis arises.

Candy Arrington has written hundreds of articles on various topics in outlets ranging from CountryLiving.com, The Writer, Writer’s Digest, Healthgrades.com, and Focus on the Family. She is a freelance editor and enjoys speaking and teaching at conferences. Her books include When Your Aging Parent Needs Care: Practical Help for This Season of Life (Harvest House) and AFTERSHOCK: Help, Hope, and Healing in the Wake of Suicide (B&H Publishing Group).


Same pattern of brain function loss in some dementia as in savants

In CBS Sunday Morning story from today, Dr. Bruce Miller from UCSF describes his work with some dementia patients.  He has compared brain scans of dementia patients with those of a child savant:

“We are seeing the same pattern of loss of function on the left side of the brain, [with] increased function in the right posterior parts of the brain, the parts that allow us to take something visual in our mind and put it on a canvas.” 

In some dementia patients — so called “acquired savants” — “the disease that destroys some brain areas activates others, unlocking hidden talent.”

Watch the full TV story here:


The story features one patient with frontotemporal dementia.



“When Should You Move Your Parent Into Your Home?”

This is a good article from Next Avenue (nextavenue.org) about steps you should take before deciding if you should move a parent into your home.  The author points out that just because a decision is “right” doesn’t mean that implementing it will be “easy.”




When Should You Move Your Parent Into Your Home?
Take some other steps first, an expert advises
By Eileen Beal, Benjamin Rose Institute on Aging
Next Avenue
March 16, 2018

If you are thinking about moving your parent in with you, ask yourself what’s going on in his or her home that’s made you think your mom or dad would be better off in yours.

In many cases the concerning issues — our parent isn’t eating right, the house isn’t as clean as it used to be, bills aren’t getting paid, doctor’s appointments are being missed, you get a call from your mom or dad at work 3 or 4 or 5 times a day, among others — don’t necessarily mean your parent needs to move in with you. They may mean your dad or mom (or both) needs help staying in his or her home.

“First, try bringing help into the home,” advises Judy Verba, a social worker at Benjamin Rose Institute on Aging in Cleveland. “If that doesn’t work, it probably is time for them to move, but don’t assume they should move in with you.”

The decision to bring your parent or parents into your home shouldn’t be made quickly. Verba also stresses, “It must be a decision that’s right for them and you.”

Right Doesn’t Mean Easy
To arrive at the “right” decision, you need to share with your parent your concerns about his or her safety, well-being and care. And where possible, your parent needs to share with you any concerns about moving.

“Whether the decision is to move in with you, or someplace else, it must be mutual,” says Verba.

You also need to consult your parent’s primary care physician or a geriatrician.

Verba explains: “That will give you good insight into their overall health status, the progression of any chronic conditions, and what to expect — and plan for — as their care needs change.”

Asking Questions
Ask yourself, and immediate family members, these hard questions, too:

What kind of relationship do you have with your parent?

“In theory,” says Verba, “if the relationship has been good, you’re in the best position to provide the best environment and care.”

Is your home the best option?

“Don’t just think about the home’s physical environment and location,” says Verba. “While it works for you, if it moves them away from their community, it might not work for them.”

What are the challenges you should expect?

The family dynamic will change. “When another person is added to a household,” says Verba, “it pushes everyone out of balance until they figure out how the new situation works.”

Household expenditures — for utilities, special foods, grab bars, transportation, and the like — will go up. “That is why it’s important to sort these kinds of issues out before the move is made,” says Verba.

The parent’s care needs will increase. Says Verba: “Those increased needs will require more of your time and energy, which could lead to cutting back on time with other family members or ignoring your own health needs. It might even force you to cut back on — even give up — employment, too.”

What kind of help and support can you expect from your siblings?

The amount you receive from your brothers and sisters depends on your family.

“Sometimes they are so relieved you have taken the lead that they do everything they can to support you,” says Verba. “Sometimes they feel absolved from responsibility. And sometimes they never get with the program and you just have to deal with their snipping and snide remarks.”

Rewards Are Real
While the challenges that come with caring for a parent in your home are real, so are the rewards.

“You are both going to know that they are living where they want,” says Verba. “And you both get to know each other in a unique way and at a unique stage in your lives.”

For many adult children, it’s also a chance to show their love and gratitude. “Their parent cared for them when they needed it and now they can care for their parent when they need it,” says Verba.


“In Oregon, pushing to give patients with degenerative diseases the right to die”

Here’s an excerpt from yesterday’s article in The Washington Post about the efforts in the state of Oregon to allow patients with degenerative diseases the right to die:

“People with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases are generally excluded from the Oregon [medically assisted suicide] law.  This is because some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications.” 

Some in Oregon are considering changes to this law or a new law that would allow people who do not have dementia to say that they do not wish to be spoon-fed if they do develop dementia.

Here’s a link to the article:


“Minimizing Caregiver Fatigue” – webinar notes

Janet Edmunson hosted a webinar today (March 6, 2018) on minimizing caregiver fatigue. Brain Support Network volunteer Denise Dagan listened in and shared notes.

Updated:  The archived recording of the webinar has not yet been posted to Janet’s website, janetedmunson.com.  However, Janet provides this link to the recording:

(you have to register with your name and email address to view the webinar)

Usually the recordings are only available for a short time.

Janet is a long-time friend. She has visited our local support group a couple of times (long ago). She wrote a wonderful book called “Finding Meaning with Charles,” about her late husband Charles. I receive her weekly “caregiver affirmations.” She has occasional webinars on caregiving topics.



Minimizing Caregiver Fatigue
Webinar presented by Janet M. Edmunson ([email protected])
March 6, 2018

Caregiver fatigue indications can include snapping at your care recipient or feeling like you are running on fumes (physical and mental exhaustion). Even long-distance caregivers can experience caregiver fatigue through stress and worry.

The two sides of caregiver fatigue are:

1. Physical exhaustion
– Being tired most of the time
– Tendency to become sick / increased vulnerability to illness
– Frequent headaches, back pain or muscle aches
– May have change in appetite or sleep

2. Emotional fatigue
– Feeling helpless or trapped
– Self doubt
– Sense of failure
– Develop a pessimistic view of life and/or the world
– Withdrawing from social events

Sources of emotional fatigue (examples, but there are many more):
– Dealing with dementia repetitiveness and constantly being on your toes to mange dementia behavior
– Constant to-do list / no relaxation or breaks
– Not having time for yourself

Emotional fatigue can lead to:
– Insomnia
– Illness or physical symptoms (higher blood pressure, weight gain or loss, heart palpitations, headaches, gastrointestinal distress, etc.)
– Crying easily
– Detachment from your relationship and activities you love, even neglect or abuse of your care recipient
– Irritability / anger
– Lack of Motivation
– Hopelessness

Signs of emotional exhaustion:
– Low tolerance to stress and stressful situations. Short fuse.
– Inattentiveness or inability to focus
– Making simple mistakes
– Lack of motivation and zeal for life
– Loss of creativity
– Physical fatigue

What to do about emotional fatigue?
– Pick your battles. Ignore the small stuff.
– Use humor to diffuse emotional stress or assault.
– Join a support group.
– Spot small opportunities to rest your mind, even for just a few minutes for relaxation, deep breathing or mindfulness.
– Take things one step at a time. Prioritize. Not all things are worth doing. Stop “low yield” activities.
– Ask for help! Rotate responsibilities with family members and/or friends so you don’t have to do everything all the time.
– Mix up your environment (beach, mall, friends, family visits). Go outside.
– Stay social with old friends and make new friends, especially through support groups.
– Examine what drains / depletes you? What energizes you?

What drains your energy? Make a list that is unique to you!.
– Negative impact of dementia: the amount of patience, creativity and quick thinking on the part of the caregiver.
– How long it takes to do everything due to immobility or cognitive issues so caregiver runs out of time.
– Increased responsibilities (taxes, cooking, housework, car repairs, etc.) that you never had to do before.
– Not having someone to turn to and/or talk to.

Janet’s personal draining list:
– Cooking (Janet is a bad cook, so lots of frozen dinners when she was a caregiver)
– Worry
– Dealing with incontinence.
– Frustration in understanding Charles’ speech
– Getting Charles ready in the morning and at bedtime & doing his range of motion exercises every day.
– Fixing something broken at home
– No time for herself

What builds your energy? Make a list that is unique to you!
List things that you miss or look forward to.

Janet’s personal energy building list:
– Have visitors over
– Time alone (read a book, watch a favorite TV show, take a walk or hike, get your hair and/or nails done, etc.)
– Running or walking with Charles or by herself on the treadmill
– Watching a great movie
– Daily frozen yogurt
– Talk with friends or family on the phone

After you’ve written your list, figure out how to fit at least one thing on your list every day.

Take advantage of when your care recipient and/or yourself have more energy naturally, like the morning. During that time do activities that take more energy or that you love to do. Keep a journal to figure out when this happens daily for you and your care recipient.

What to do about physical fatigue.
– Be aware of its affect on your health, like weight gain or loss, increased blood pressure. You can’t do anything about a problem you don’t recognize as being a problem.
– Get adequate hydration. Dehydration taps your energy. Your urine should be clear, pale yellow or straw colored.
– Fit in some kind of physical activity. Exercise will actually energize you.
– Make time to do nothing. Especially, if you are caring for someone with dementia, just 10 minutes alone can revitalize you. (Some caregivers have told Janet they hide in the garage or bathroom to get their 10 minutes of alone time.)
– Keep time with your body clock. Get chores done when you have peak energy.
– Get enough sleep!

The caregiver’s struggle getting enough quality sleep.
In Janet’s experience, Charles would wake every hour for over a year. He required turning, toileting, etc. and Janet had difficulty getting back to sleep. For some time she took Tylenol PM so she could get back to sleep. This is not advised. After awhile she went to bed with him until he fell asleep, then moved to sleeping on the floor so his waking didn’t wake her as often. She wanted to be in the room with him, rather than down the hall. Her sleep improved when he got a hospital bed and better when he moved into a facility.

Many emotional issues interfere with quality sleep even when we are not caregivers, like worry over finances, arguments with friends or family, etc.

Why we need sleep:

Information from Matt Walker’s, book “Why We Sleep.”
Adults over 65 need 6-8 hours nightly. We sleep in 90-minute cycles. Within that 90 minutes there is non-REM sleep and REM sleep (REM = rapid eye movement)
non-REM sleep has 3 stages, followed by REM sleep, which is when we dream, store memories, etc. The % of time in REM sleep increases throughout the night so if you sleep fewer hours you get less REM sleep.

During sleep we put down memories and increase our learning. REM sleep washes away toxins (prevents Alzheimer’s?), improves immune system so we get sick less often, increases killer cells that fight cancer, increases creativity and insight. REM sleep is anti-imflammatory. Ironically, the more tired you get the less tired you feel so you may not be aware of the loss of sleep’s impact on you.

Getting better sleep.

Sleep habits
– Make sleep a priority. This means you will have to give up or postpone something in favor of sleep.
– Get a sense of calm before going to sleep. Apps on the phone you can learn from: Head Space or Calm.
– No TV an hour before sleep
– No stimulants or sedatives before bedtime. This includes caffeine, smoking, alcohol (fragments sleep and blocks dreaming)
– Get activity during the day, but not too close to bedtime.
– Set a consistent schedule (sleep and wake at the same time, even weekends)
– Limit naps duration and no naps after 3pm
– Reserve your bed for sleep (not work, TV, etc.)
– Get sunlight during the day
– Yoga poses for sleep. (Lie on back close to wall, put legs up wall and hold for a few minutes.)

Sleep environment.
– Make your sleeping space dark. Use a motion detector nightlight as it is less bright and disturbing to sleep. Use an eye shade or eye mask.
– Keep your room cool
– Keep electronic devices out of your bedroom. The blue light from screens sends your brain signals to be awake.

Tips for falling and staying asleep.
– Take your tongue off the roof of your mouth, which tricks your brain into thinking you are near sleep.
– Keep paper by your bed. Write thoughts that keep you awake or journal to attain calm before sleep.
– Relaxation techniques: Deep breathing, counting, progressive muscle relaxation (contract, then relax in sequence from toes to head), recite lyrics to a song (America the Beautiful while visualizing America’s beauty), pray. All these techniques distract yourself.
– Get out of bed and read for 20 minutes if you are not falling asleep. Then, repeat calming routine and when you feel sleepy return to bed and try sleeping again.

Cognitive Behavioral Therapy (CBT) can also help sleep by replacing anxiety with positive thoughts. Can be more effective than sleep medications. Janet’s modified CBT is to talk to herself, “I deserve sleep,” “Everything is under control,” etc.

Online CBT for insomnia programs (not free) presented in sleepreviewmag.com:
– CBTforInsomnia
– Cobalt Therapeutics’ Restore
– Sleepio

Caution with medications.
For people with Parkinson’s, some medications can interfere with sleep. Ask your doctor if yours or your care recipient’s medications can interfere with sleep. Antidepressants can help sleep. Janet is finding this true for her mother.

Sleep medications sedate you so you are not going through the stages of sleep so it is not good quality sleep. There is an increase of death and cancer associated with them. They are only meant for short term use, but caregivers tend to use them longer than intended.

Janet’s experience with Ambien with her mother who took a half-pill for years. Ambien is recently suspected in contributing to car accidents and other incidents of great concern. Janet’s mother began passing out. Bad falls took her to the hospital. Eventually, they realized Ambien was probably causing the fainting (and falls). When she stopped taking Ambien, she stopped passing out, falling, and being exhausted.

Benadryl dehydrates users, so it is not your best choice for a sleeping medication, either.

Promoting better sleep for your care recipient.
– See the lists above under ‘Getting better sleep’
– Restrict eating and drinking within an hour of bedtime.
– Go over their medication list with their doctor.
– If they get up, remain calm. Don’t start a fight or nobody will get back to sleep.
– For Charles, Seroquel helped him sleep, but he needed an antipsychotic due to his diagnosis.

– National Sleep Foundation: sleepfoundation.org
– Matt Walker’s Book, “Why We Sleep”

Your Action Plan: What ritual will you adopt for better sleep?

Q. What about melatonin or CBD oil (non-psychotropic)?
A. It helps you fall asleep, but doesn’t help you stay asleep. Melatonin is not good for PSP. CBD oil comes from marijuana. Janet doesn’t know how it affects sleep, but ask your doctor.

Q. I don’t go to social events because I might bring the party down. I am caring for my wife with PSP.
A. Some people can’t handle a neurological disease, but it shouldn’t stop you from attending social events. Don’t worry about bring ing the party down. Find those who want to be supportive. Plan a short response to how your wife is doing and move on to other topics.

Q. How do I avoid feeling caregivers have invaded my space? I feel I have to leave my home when they are present.
A. It is great you are getting help, but don’t let these feelings stop you from receiving help. Try setting aside a space in your home where caregivers are not allowed. Remember the serenity prayer, “accept the things you cannot change.”

“Elder Abuse: Sometimes It’s Self-Inflicted” (NYT)

This is a story of a man living alone with two dogs in San Antonio, TX.  Someone called adult protective services, who sent a caseworker to the man’s home.  The caseworker found a bad situation, which pointed to an under-recognized problem called self-neglect.  “Self-neglect refers to someone whose behavior threatens her health and safety.”  Case workers “look for factors like hoarding (of objects or animals), poor personal hygiene and unsanitary conditions.”

Self-neglect “accounts for more calls to adult protective services agencies nationwide than any other form of elder abuse.  Yet efforts to identify and help older people who neglect themselves often collide with Americans’ emphasis on self-determination.”

“Family members get fed up and don’t want to get involved,” said Courtney Reynolds, a research analyst at the Benjamin Rose Institute on Aging in Cleveland. “They attribute it to a character issue, like stubbornness, instead of a decline in the person’s ability to manage.”

Read the article to learn what happened next…


Elder Abuse: Sometimes It’s Self-Inflicted
The New Old Age: The New York Times
By Paula Span
March 2, 2018