“Watch Out for These Hidden Costs of Assisted Living” (Samada.com)

This is a terrific article on the *possible* “hidden costs” of assisted living.  It’s terrific because it is very detailed, listing all kinds of costs.
Robin
———————–
Watch Out for These Hidden Costs of Assisted Living

Here are additional charges that may not be included in the basic fee
By Kaya Laterman
Samada.com
May 2, 2018

Once you or loved one has made the decision that assisted living would be a good move, the next question is usually: How much will it cost? The national median cost for assisted living is $3,750 per month, but prices vary widely from state to state and facility to facility.

The way assisted living facilities break down their costs also differs from facility to facility. Many residences charge a basic fee, which includes rent, meals, housekeeping, access to activities and exercise. Then they will group additional services, like therapies and medication disbursement, into different payment tiers. Other facilities consider themselves all-inclusive, but may have add-on fees, which can increase a monthly bill by several hundred or even thousands of dollars.

Some facilities, after a periodic assessment, may either try to bump a resident’s payment plan up a tier or start charging more for added services. You are entitled to contest the additional services and fees as long as you can prove they are not needed, which may require the assistance of a geriatric care manager, social worker or other professionals who can attest to that.

It’s important to read the contract carefully and make sure the costs of all services are clearly indicated. Services that may incur additional fees can include:

Hygiene Costs

* Dressing. Fees can be split for dressing in the morning and undressing in the evening.
* Bathing. Fees may be different for full help with showering or having someone in the room while the individual showers.
* Bathroom/incontinence care. Some individuals may need help getting to and from the bathroom, sitting and standing, wiping, and changing adult diapers.
* Laundry

Medical Costs

* Health screening before moving in. Some facilities include this in their overall pricing upon move-in, but others many indicate it on the bill as a separate one-time charge.
* Medication management. Depending on the needs of the resident, staff may simply remind a resident to take his or her daily dosage, while other facilities will store and administer medications and record medication disbursement.
* On-site pharmacy or doctor access. Does the facility have a doctor or pharmacy onsite? You may be charged an additional fee for the convenience, disguised as a monthly “facility fee.” However, the services the doctor renders or the price of the prescription may be covered by Medicare or Medicaid.
* Treatment for temporary wounds or illness. Some facilities will tack on an additional fee for cleaning out and monitoring wounds from a fall or helping a resident get over a long-lasting flu.
* Blood pressure monitoring
* Blood glucose monitoring and insulin injections

Mobility and Other Care Costs

* Escort to and from the dining room or activity center
* Checking in on resident at regular intervals
* Reminders. This may include reminders to go to the bathroom every few hours or before bed, to take medication or to get to weekly activities and therapies on time.
* Use of gym or spa, if available on premises
* Transportation to area shops, doctor’s office
* Admission/Discharge. A one-time admissions fee may show up on bills under names like Service Initiation Fee or Community Service Fee. Also, look at the fine print in the contract for discharge policies to make sure you are entitled to a refund for prepaid services that were not used.
* Extra fee to deep-clean the bathroom. Hard to believe, but although most cleaning services are part of a standard monthly charge, some facilities may add on a deep-cleaning charge from time to time.
* Telephone

Other Hidden Costs

These are costs that aren’t charged by the assisted living facility itself, but ones that you or a loved one might incur as part of the transition to assisted living.

* Moving costs. Includes hiring a junk removal service, paying for movers and/or the costs involved in selling a house
* Travel expenses
* Lawyer or elder care manager fees

Kaya Laterman is a freelance reporter based in Brooklyn, N.Y.

“Tips for taming caregiver stress” (Harvard)

Harvard Medical School sends out emails (health.harvard.edu) on various medical topics, mostly as a way to sell their books. I received an email this morning from Harvard on the topic of caregiver stress, describing these eight tips for “taming caregiver stress”:

* Relaxation response techniques and nurturing techniques are vital.

* Protect your own health.

* Join a support group to talk out frustrations with other people in your situation and to get helpful ideas.

* [Share] the work, instead of taking on everything yourself.

* When someone offers help, accept.

* Accept that circumstances change quickly.

* Accentuate your spiritual connectedness to something greater than yourself, be it to God, community, or the natural world.

* Remember that you’re doing this not solely out of obligation.

Harvard’s email also provides some useful resources. The email is copied below.

Harvard says:

“While some stress is inevitable, when your body
repeatedly encounters a set of physiological changes dubbed the stress response, trouble can brew. Stress may contribute to or exacerbate various health problems. But it’s possible to dismantle negative stress cycles [by knowing how to] identify your stress warning signs and…better manage stressful situations.”

Robin

—————————————–

Tips for taming caregiver stress
Harvard Medical School
July 7, 2018

Caring for others fulfills a basic social contract in ways that can
draw generations and individuals closer. Certainly, caring for an elderly parent or ailing spouse or partner is a worthy, often
satisfying pursuit. But it isn’t easy. If you’re among the  estimated 66 million Americans acting as caregivers for friends, family, or neighbors, you may often wrestle with stress as well as exhaustion, anger, guilt, grief, and other emotions.

Two-thirds of these caregivers are women. The task is especially hard on women in the so-called sandwich generation, who are simultaneously caring for children and older parents, quite possibly while working outside the home, too.

While you attend to the needs of others, your own sense of well-being may head south. Studies of men and women responsible for the long-term care of relatives show higher rates of illness, suppressed immune response, slower healing, and even earlier death among caregivers.  Additionally, research reveals that ongoing stress endured by older
adults caring for spouses with Alzheimer’s disease has a negative impact on the caregiver’s own mental functioning.

In order to give care to others, you need stress relief, support, and time for yourself and your family. Theses “Tips for taming caregiver stress” may help.

* Relaxation response techniques and nurturing techniques are vital. Practicing them often will enable you to feel calmer, happier, and better able to help others. If it’s too hard to find the time, consider getting extra help with some household tasks. The Eldercare Locator at www.eldercare.gov can help you find varied services for older adults and their families; it’s run by the Administration on Aging. The Rosalynn Carter Institute for Caregiving, at www.rosalynncarter.org, also provides recommendations for evidence-based caregiver support programs.

* Protect your own health. Research suggests that a caregiver’s immune function is often suppressed by the stress of caring for others. Boost your resistance by eating well, getting enough rest and exercise, and pursuing activities that bring you pleasure. Take advantage of regular respite care from professionals, family, and friends to give you much needed breaks.

* Join a support group to talk out frustrations with other people in your situation and to get helpful ideas. Some caregiver support groups are available online (such as a nationwide chat group run by AARP). Others are run by local hospitals, senior centers, and community groups.

[Robin’s note: I think these AARP caregiving forums are what Harvard describes as a “chat group” —
https://community.aarp.org/t5/Caregiving/ct-p/Caregiving ]

* A blend of assertiveness and cognitive restructuring skills can help you share the work, instead of taking on everything yourself. Spell out to other family members what needs to be done and what sort of help would be best. If no one offers help, ask for it. Linking those who can lend a hand has gotten much easier with new websites and apps that help friends, family, and communities coordinate care. Another example of a helpful site is CaringBridge (www.caringbridge.org).

* When someone offers help, accept. Keep handy a list of small tasks people can do, such as calling regularly, cooking an occasional dinner, shopping, and running errands. You can dole out tasks or ask people to check off what they can do.

* Accept that circumstances change quickly. Periodically reassess what you can offer and what assistance you need. If it’s getting too hard to fulfill certain needs, ask family members for help or consider other options, such as hiring paid caregivers to take on these tasks. Consult a geriatric care manager (www.aginglifecare.org) or social worker for help; your local council on aging or visiting nurse association should be able to help you find one. If necessary, consider another living arrangement that would help you meet your needs and those of your loved one.

* Accentuate your spiritual connectedness to something greater than yourself, be it to God, community, or the natural world.

* Remember that you’re doing this not solely out of obligation.
Focusing on the love you hold for your loved one can help dial back stress when things become frustrating and overwhelming.

 

“How to bounce back from anything. Resilience can be learned.” (Healthy Living)

Someone in one of our local support groups shared this article about resilience with me recently. It applies to those coping with a neurological diagnosis.

The article addresses the four “simple skills” of super-resilient people:

* No matter what, choose to be a survivor.
* View every single setback as an opportunity.
* Go ahead and dote on yourself a bit.
* Don’t go it alone.

Robin
——————–

How to Bounce Back from Anything
Resilience can be learned: Here are the secrets of people who hang tough in hard times.
by Jancee Dunn

Healthy Living Magazine
Spring 2018

Why is it that some people can rebound from a difficult event, but others never quite seem to get their mojo back? While it’s true that resilience comes more easily to some of us, the good news is that anybody can learn to be more emotionally hardy. Super-resilient people, it turns out, do a few specific things right — and these are simple skills we can all pick up.

Secret No. 1
No Matter What, Choose to be a Survivor

When we face bad news, it’s hard not to jump to extreme conclusions. (“I’ll never work again!” “It’s definitely a tumor!”) But resilient people steer clear of this kind of catastrophic thinking, which ups stress levels, blocks purposeful action, and leads to a downward spiral. Instead, do what Nora Ephron recommended: “Be the heroine of your life, not the victim.” You can’t always control what happens to you — but you can control your attitude and actions.

Secret No. 2
View Every Single Setback as an Opportunity

The most resilient people realize that a setback such as a layoff, health scare, or conflict at home can be a challenge and a chance to grow, notes New York psychotherapist Jeffery R. Rubin, PhD, author of “The Art of Flourishing.” “Success is often an obstacle to learning,” he says. “When everything is going well, we continue to do what worked, so we don’t learn much. But a crisis can lead to a breakthrough.”

Secret No. 3
Go Ahead and Dote on Yourself a Bit

Physical health is a pillar of resilience. Before and during a crisis, it’s essential to have healthy habits like getting enough sleep, eating well, exercising, and avoiding mood changers like alcohol and other vices. Beyond that, yoga may be especially beneficial. In a 2012 study from Harvard Medical School, students who practiced yoga for 10 weeks were better able to calm themselves when upset compared with those who did a standard gym regimen. “Yoga promotes self-regulation, which is the ability to step back from a situation and not be reactive,” says Jessica J. Noggle, PhD, one of the researchers.

Secret No. 4
Don’t Go It Alone

Research has shown that socially isolated people have a more difficult time recovering from life’s challenges. “The more you hide your problem, the more power it has over you,” explains Bobbi Emel, a psychotherapist in Palo Alto, California. “Being around other people reminds you of who you are; they reflect that you’re still that same person.” That interconnection gives us strength to handle challenges by helping us develop a sense of belonging and purpose — which, when it comes to handling tough stuff, may be the most important component of all.

 

July 2018, Parkinson’s Support Group Meetings, Northern and Central California

Here’s a list of Parkinson’s support group meetings in Northern California and Central California in July 2018, where the guest speakers may be of interest to those in the Brain Support Network community:

Lodi
Monday, 7/2, 10am-noon
Guest Speaker:  Michelle Rosado, Disability Resource Aging for Independent Living (DRAIL), San Joaquin County
Topic:  Resources and device to help make daily living easier for those with challenges
RSVP?:  No.

San Andreas (Calaveras County)
Tuesday, 7/3, 10am-noon (guest speaker usually starts at 10:30am)
Guest Speaker:  Kenneth Renwick, MD, family physician, Calaveras County
Topic:  Medical marijuana for people with PD
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 7/10, 3-4:30pm
Guest Speaker:  Consuelo Juarez, patient advocate, Rare Patient Voice
RSVP?:  No.

Menlo Park/Little House
Wednesday, 7/11, 2-3:30pm
Guest Speaker:  Nikki Hochhauser, Home Instead Senior Care, Sunnyvale (servicing Belmont to Cupertino)
Topics:  Senior care options for those with PD, suggestions for hiring an agency or private caregivers, avoiding elder scams, and the 70/40 conversation rules
RSVP?:  No.

Sonoma/Vintage House
Thursday, 7/12, 10-11am
Guest Speaker:  Marie Held, SLP, speech therapist, Brookdale Home Health
Topic:  Speech therapy services for managing PD
RSVP?:  No.

Clovis (Greater Fresno)
Saturday, 7/14, 10am-noon
Discussion Topic:  Alternative treatments for PD
RSVP?:  No.

Lincoln
Tuesday, 7/17, 10-11am
Guest Speaker:  Rock Steady Boxing Roseville representative
RSVP?:  No.

Elk Grove
Wednesday, 7/18, 10-11:30am
Guest Speaker:  Deborah Gonzalez, speech therapist, Dignity Health
Topics:  Voice projection and swallowing
RSVP?:  No.

Merced
Thursday, 7/19, 10am-noon
Guest Speaker:  Kelly Lowe, therapeutic massage therapist, Merced
Topic:  Pressure points
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 7/19, 10am-noon
Guest Speaker:  Karen Low, SLP, speech therapist, Kaiser
Topics:  Voice projection and swallowing
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 7/21, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Lena Hart, Alexander Technique instructor
Topic:  Redefining and finding balance with PD
RSVP?:  No.

Find meeting location details on the Stanford Parkinson’s Outreach website.

 

Spousal Caregiver Job Description (humorous)

This is a humorous job description for a spousal caregiver:

thecaregiverspace.org/spousal-caregiver-job-description/

Spousal Caregiver Job Description
by Allison Breininger (Guest Author)
Jun 8, 2018
The Caregiver Space

The preferred degrees and certifications include, but are not limited to:
Licensed Social Worker
Psychiatrist
Psychologist
Chaplain
Healing Touch Practitioner
Essential Oil Consultant
Geneticist
Urologist
Oncologist
Dermatologist
Hematologist
Orthopedist
Ear/Nose/Throat Specialist
Cardiologist
Radiologist
Pulmonologist
Anesthesiologist
Ophthalmologist
Pharmacist
Nurse
EMT
Surgeon
Dietician
Physical Therapist
Personal Trainer
Wound Care Specialist
Insurance Specialist
Life Coach
Researcher
Professional Organizer
Fundraiser
Zen Master
Public Relations Guru

As the article says, “Please note: the ideal candidate for this position would have not one, but all of the above certifications.”

Check it out….

Robin

 

“Persisting in the Face of Caregiver Difficulties” – Webinar Notes

This past Tuesday, Janet Edmunson (janetedmunson.com), caregiver to her late husband Charles, hosted another terrific webinar on “Persisting in the Face of Caregiver Difficulties.”  She focused on how mounting frustrations of caregiving can chip away at optimism and energy.  By being aware of our negative thinking and re-framing our perspective of a given situation so that we see the positive, we can avoid a spiral of persistent feelings of being dumped on, overwhelmed and depressed.

There is research showing that building strong positive thinking habits makes people more emotionally resilient.  It even has a name:  post-traumatic growth.  It is the optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.

Brain Support Network volunteer Denise Dagan listened to the webinar and has shared her notes below.  Her notes include both Janet’s presentation and the question-and-answer period.

Denise says:  “My notes are filled with steps that, taken daily, could make you a more emotionally resilient, positive (hopefully more healthy) caregiver.  Try some of them and see what happens.  Heck! try all of them!”

Denise’s notes and a link to the archived recording are below.
Robin
————————–
Register to watch a recording of the webinar here:
https://attendee.gotowebinar.com/recording/8497359402706827267

Notes by Denise Dagan, Brain Support Network volunteer

Persisting in the Face of Caregiver Difficulties
Webinar by Janet Edmunson
June 5, 2018

Was it a bad day or a bad 5 minutes you milked all day?

Get rid of ANTS = Automatic Negative Thoughts

They pop into our head all day.  We can’t control that, but we can control whether we act appropriately when faced with ANTS.  It can be difficult to gain perspective.  Negativity tends to stick with us while positivity is like teflon and slips off us.

Negative thinking is appropriate and rational:  When your loved one takes a turn for the worse.  It is appropriate to feel negative and sad in this situation as you have no or little control over the outcome.

Other negative thinking is irrational:  “I’ll never be happy again because of my caregiving burden.”  That is over the top.  You know that statement is unreasonable because steps can be taken to make that statement is untrue.  If you really think about it you can probably think of a time when you have had a belly laugh, even in the midst of your caregiving burden.  In that moment you were happy.

Keep asking yourself, “Is there another perspective?”

1. Catch yourself.  Is your thinking rational or irrational?

2. Check.  Is it true?  Can I make reasonable changes or get help to make it untrue?

3. Challenge.  Are there healthier ways to respond than purely emotionally?  Ask yourself what advice you would give to a friend in a similar situation.  Is the situation truly catastrophic?  Have I exaggerated how bad things really are?  Have I blamed the wrong person.  Have I overreacted?

Thought Worksheet:
Event or Situation _____________ (fill in your situation)
Feelings _________________
(fill in your feelings.  Are they over the top or reasonable?)
Automatic thought:  (fill in your automatic thoughts about the situation)
Realistic thought:  (fill in more realistic thoughts about the situation)

Example:
Flat Tire
Bad things always happen to me.  This is the worst day ever.
Realistically, its just a flat, it will take time, but I will get through it.

Example:
On top of caring for spouse, your mother has a new diagnosis of Alzheimer’s
Feelings of despair, can’t handle another, overwhelmed, sad
Automatic thought: This is horrible and way more than I can handle
Realistic thought:  My feelings are real.  I must accept the situation and begin to find support and a path forward.

Energy flows in the direction of your attention.
Where is your attention?  How do you determine if your thinking is optimistic or pessimistic?
Pessimistic thinking: Its all my fault.  It’s going to affect my whole future.  Bad things always happen to me.  I may as well stop trying, I won’t be successful.
Optimistic thinking: I know why this happened and I can correct it.  It doesn’t have to happen again.  I just had a bad day.  This bad thing is temporary and only one part of my life.  I am confident I could change the situation with persistence and a better strategy.

People who are pessimistic are more likely to give up, blame themselves when things go wrong, feel worthless and give up.  They tend to give up early, find and focus on the negative, predict failure and negative outcomes, draw negative conclusions without seeking information and solutions

People who are optimistic are more likely to persist in the face of frustrations and tend to see failure as a normal part of life.  They tend to persist over time despite difficulties and setbacks, use positive results to build confidence, predict success based on a realistic plan, seek solutions and try multiple approaches and seek every positive aspect of a situation.

Explanatory Styles:

Permanence
Pervasiveness Personal
Pessimist: See the situation as Permanent
See the problem as Universal
Internalize the cause

Optimistic:  See the situation as Temporary
See the problem as Situation specific
See the cause as External

Examples of pessimistic self talk:  Poor me.  I can’t do this anymore.  I’m overwhelmed.  I’m not capable of doing things I never had to do before.

Positive self talk is realizing you are in a learning curve but you are perfectly capable and will figure it out – even if you need to get help.

Who fares best during adversity?
Some crumble and grumble
Others bounce back, grow and become stronger – but how?

In the book, “Positivity,” author Barbara Frederickson says those who bounce back learn to put the brakes on negative thinking and focus on the positive to see us through difficult or frustrating experiences.

Post traumatic growth = optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.  It is facilitated by relating to others, using your personal strength, perseverance and persistence to carry you through.

Which way is your spiral going? Toward the positive or toward the negative?
If your spiral is heading toward the negative, it will drain your energy.  If you bring in positivity, even a bit at a time, you can enhance your energy and overall wellbeing.  It is the opposite of letting each frustration drain your energy and turn you toward a negative emotional spiral.

How to tune into positivity:
1. Tune into your thoughts and feelings.  Your enemy is negativity and your response to it.  What are you telling yourself is making you feel overwhelmed.  Where there is a negative there is always a positive.  Negative and positive can be present together in one’s feelings.

Examples:
When caregiving is overwhelming and you want to give up.  Be thankful your loved one is still with you.
When friends pull away, be thankful for the new, supportive people who have arrived to help.
When your loved one is incontinent, be thankful your loved one isn’t retaining urine, which can be life threatening.

2. Come up with a mantra to counteract negative self talk:
Remind yourself you are not helpless
It’s only a setback.  I will figure it out.
I will get it done and it will be fun/fine.

3. Have realistic expectations.
Bad things sometimes come in more than threes.  Even if they come in sixes, they happen and you just have to get through each challenge.  You will build tremendous strength, confidence and post-traumatic growth as a result.

She told a story about getting robbed in the ER while napping by her husband who was having a crisis.  You get through it.

Adopt positivity habits.  They take practice/honing.

1. Grow your gratitude.  Be thankful for everything and everyone.  It builds happiness.  Keep a gratitude journal each evening.  Ask yourself what three marvelous things happened each day.  It can combat depression.

2. Savor the good.  Once you start to realize those marvelous things that actually do happen each day, you will start noticing them when they happen.  Savor them in the moment.

3. Monitor your mood.  When you are sad you stop doing things you like to do that make you happy.  Make a list of what you love and start doing them when you have time.  Read a book, call a friend, etc.  Be proactive in improving your mood.

4. Value your worth.  Negativity lies in devaluing our worth.  Reflect on the best version of yourself and the legacy you are leaving by being a caregiver to someone you love.  Stop beating yourself up and criticizing yourself.

5. Connect with others.  We are wired to be social.  It makes us feel safe, secure, happy, and soothed.  Negativity separates us from those we love.  Make a list of your social support people and be proactive in connecting with them.  Invite them to you, if you cannot get out to them.  Make new friends going through similar experiences (support groups, exercise groups, etc.)

The most essential factor is persistence – the determination never to allow your energy or enthusiasm to be dampened by the discouragement that ,just inevitably come. – James Whitcomb Riley

Your Action Plan – What ritual will you adopt?

Reframe your negative thoughts.  Shift your focus from the negative to the positive.

Questions and Answers

Q.  Even when aide is present caregiver must still intervene because aide can’t deal with autistic daughter.  So frustrating.
A.  This is your reality and a rational situation with appropriate negative feelings.  To get past this you must take action.  Begin by communicating/educating the aide about dealing with the daughter.  You can bring in an outside educator to teach the aide about autism.  Look for some positives (humor, when things do go smoothly as examples to share with the aide).

Q. How do you allow yourself as a caregiver to make time for yourself when you have trouble taking care of household tasks.
A. You will feel guilty, but you need to let your nervous system rest in the interest of your own health.  Try to squeeze in a few pages of a book while you are on the toilet or in the bath.

We can’t take time for ourselves when we are the only caregiver 24/7.  That is when you need to enlist the help of friends, family, neighbors, fellow church members or in-home hired help.  If you have the means, hire a house cleaning service and yard service or enlist friends, family, etc. to do those chores so you can have some respite.

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

“A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review

The Northwest Parkinson’s Foundation (nwpf.org) has a community blog. Recently a blogger named Pete Beidler reviewed a book by Jolyon Hallows titled “A Parkinson’s Life and a Caregiver’s Roadmap.” In the book, Jolyon describes his journey with his wife Sandra, who lived with Parkinson’s Disease for 20 years. The third part of the book is focused on caregiving.

The reviewer describes the third part this way: it “draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on. … Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: ‘laughter is not disrespectful’.”

You might enjoy reading this book. If you do, please share what you learned. And consider donating the used book to our local support group’s lending library.

Robin

=========================================================

nwpf.org/stay-informed/blog/pete-beidler-reviews-jolyon-hallows-a-parkinsons-life/

Northwest Parkinson’s Foundation
PD Community Blog, May 17, 2018
Pete Beidler Reviews “A Parkinson’s Life”

A Parkinson’s Life and a Caregiver’s Roadmap, by Jolyon E. Hallows. Burnaby, British Columbia, Canada: WCS Publishing, 2018. 225 pp.

In his Afterword to “A Parkinson’s Life and a Caregiver’s Roadmap,” Jolyon Hallows confesses to a certain uncertainty of purpose: “When I started writing this book, my motivations were unclear. It seemed important to me, but I wasn’t sure why” (185). By the end he seems to have found clarity of purpose. He wanted his readers to know what a Parkinson’s marriage is really like, both for the one with the disease and for the caregiving spouse.

Hallows divides his book into three parts. Part I, Prelude, gives the history of the author’s and his wife Sandra’s life together before she receives her diagnosis, and it describes the basic facts about Parkinson’s disease and the various treatment options for people who have it. Part II, Living with Parkinson’s, gives a mostly chronological account of the progression of Sandra’s disease and her husband’s increasingly desperate efforts to care for her. Part III, Caregiving, draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on.

Hallows is an excellent writer. He has a rare gift for explaining complicated concepts in simple language. What does a dopamine neuron do? Hallows explains it this way:

“Let’s say you pass a storefront in the mall and you see something in the window that interests you. Do you go into the store to examine it or do you move on? It all depends. Do you have the money? Is there someone waiting for you at the coffee shop? Are you in a hurry? Do you really need, or want, whatever this is? The evaluation of each alternative—to go into the store or to move on—is one of the things the dopamine neurons provide. They help us choose.

But what happens when the signals fail? In that case, there’s nothing to tell the brain what to do. So, lacking direction, it does the logical thing—it freezes,” (19–20).

Why can’t we get artificial dopamine into the brain to replace the natural dopamine that the brain has stopped making? Hallows elaborates:

“The brain is persnickety. It doesn’t tolerate some of the stuff the bloodstream carries, so it’s protected by something called the ‘blood-brain barrier,’ which acts like a security guard in an exclusive gated community, keeping out the riffraff. Among the many substances that can’t cross the barrier is dopamine. You can take all of it you like, but none of it reaches your neurons. . . . Enter levodopa,” (32).

A Parkinson’s Life and a Caregiver’s Roadmap is not about malls, of course, or coffee shops, or gated communities, or riffraff, but Hallows uses these familiar concepts to help us to understand unfamiliar terms like dopamine neurons, blood-brain barriers, and freezing.

One of the attractive features of Hallows’s writing is his sense of humor. When he introduces levodopa, for example, he quips, “No, levodopa is not curt advice to someone married to a dullard” (32). Get it, leave-a-dope? Another example: when Hallows’s wife Sandra has deep brain stimulation surgery, he has to learn how to use the control stimulator: “I showed the stimulator to Sandra’s sister Vivian and boasted I could now turn Sandra on and off. She said it was a sorry excuse for a man who needed an electronic device to turn his wife on,” (78). Toward the end of the book Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: “laughter is not disrespectful” (183).

One of the most striking features of “A Parkinson’s Life and a Caregiver’s Roadmap” is its honesty. Sandra lives for more than two decades after her initial diagnosis. During those decades she grows less and less able to do the things she had always enjoyed: her work as a nurse, her driving, her ability to travel, her ability to take care of herself, her independence. It would perhaps have been possible for Hallows to report Sandra’s losses in positive terms as gains in love or devotion or knowledge or humility, but Hallows does not do that.

He focuses squarely on the disabling features of the disease: “In the final stage of the disease, the person is bedridden and needs help in all areas of his or her life including getting dressed, eating, and personal hygiene” (26). Hallows tells us that he has to brush Sandra’s teeth, help her get on and off the portable bedside commode, wipe her, give her sponge baths in bed, help her put her panties and bra on, and so on. Nor does he sugarcoat the unpleasantness of the disease for both of them by promising a cure: “Parkinson’s is far more complex than researchers had suspected and. . . . it will be a long time before there’s a cure on the horizon” (20). Furthermore: “This prolonged research is expensive—one source cites over a billion dollars and ten to twelve years to bring a new treatment to market. . . . So even if researchers find a real cure, it will take years to prove it” (28).

The medications and surgeries that are now available have helped many Parkinson’s patients, but they can help for only so long: “Medications have given generations of Parkinson’s patients extended time and a better quality of life, but there’s only so much they can do in the face of the disease’s inexorable progress,” (34). When Sandra dies, Hallows tells readers that “Sandra put up a valiant fight against her Parkinson’s. But it’s not a fight anyone ever wins” (181).

Should you read this book? That depends. If you want to know the grim facts about what probably lies ahead for people with Parkinson’s and for those whose lot it is to care for them, “A Parkinson’s Life and a Caregiver’s Roadmap” is a good choice. If you remember always that Parkinson’s follows a different trajectory for each person and that no single “roadmap” will work for all caregivers, then Hallows’ book can help you to anticipate and plan ahead for some of what probably lies in front of you. As you come to terms with the disease and with its almost inevitable downward progression, you may find solace in learning from this book that you are not alone.

Pete Beidler has read and reviewed many books about Parkinson’s disease. Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (Coffeetown Press, 2018, ISBN 978-1-60381-746-2) can be purchased here.

Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life