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

 

Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th

Update on 6/11/18:  Unfortunately this webinar is now cancelled.

Brain Support Network group member Steven Russell shared with me today info on an upcoming webinar, which will give an overview of all four of the atypical parkinsonism disorders — MSA, LBD, PSP, and CBD.  Details are:

What If It’s NOT Parkinson’s?

In this webinar, Dr. Mihaela Alexander, Colorado Neurodiagnostics, will discuss atypical parkinsonisms such as multiple system atrophy and Lewy body dementia, among others (PSP, CBD). Dr. Alexander will cover what we know about these conditions and what treatments are available for each condition.

Tuesday, June 12
10-11am CA time

Organizer:
Parkinson Association of the Rockies, Denver, parkinsonrockies.org

Registration:
attendee.gotowebinar.com/register/3367947443153312002

General Information:  (same as what is above)
parkinsonrockies.org/programs-services/event-calendar/276/2018-06-12/what-if-it-s-not-parkinson-s-webinar

 

“Lewy Body Rollercoaster” – Alzheimer’s Weekly

Here’s an excerpt from an Alzheimer’s Weekly article from April 12, 2014 about Lewy body dementia (LBD):

www.alzheimersweekly.com/2014/07/lewy-body-rollercoaster.html

Excerpts from

Lewy Body Rollercoaster
April 12, 2014
Alzheimer’s Weekly

Attention, alertness and cognition have dramatic fluctuations in Lewy Body dementia. Caregivers call these ups and downs “The Roller-Coaster of LBD.”

“I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD). According to the Lewy Body Dementia Association (LBDA), these ups and downs in function are sometimes refer to by family caregivers as the “roller-coaster effect” of LBD. Fluctuating levels of cognitive ability, attention and alertness are one of the core features of LBD.

Important Diagnosis
“The combination of the motor signs of Parkinson’s disease (slowed mobility, stooped posture and tremor) and mental confusion, especially if the degree of confusion fluctuates day to day, should raise a red flag for suspicion of LBD,” says Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “If those symptoms are accompanied or preceded by REM sleep behavior disorder (vivid dreams, dream enactment, hitting bed partner, falling out of bed) and visual hallucinations (seeing people, animals, etc., that aren’t truly there), then the diagnosis of LBD is almost certain. Even when all symptoms of LBD are present, it is critical for the evaluating doctor to look for underlying, TREATABLE causes of dementia.” A thorough assessment will include an inventory of daily medications (drugs can produce a “chemical” state of pseudodementia), CT or MRI scan of the brain, blood tests for thyroid function and vitamin deficiency and other causes of dementia that can be identified by routine study.

Following Alzheimer’s disease, LBD is the most misdiagnosed form of dementia but the second most common cause of progressive dementia, affecting 1.3 million Americans. LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, that impair thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help people with LBD get comprehensive and appropriate treatment and help caregivers get much needed support. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.

Pain and Fatigue in Parkinson’s – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month.  Lately they’ve been re-broadcasting recordings of previous webinars.  Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.

There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many.  The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.

You can find the recording online here:  (you’ll have to register first)

https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Here are two highlights from the question and answer session:

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.

Robin

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

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Notes by Denise Dagan, Brain Support Network volunteer, May 2018

Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016

Speakers:  Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s

PAIN

More than 75% of people with PD may experience pain.  Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)

Pain is as common in Parkinson’s as other non-motor symptoms.  Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.

Pain can be exacerbated by stress, over exertion or illness.  The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods).  Dystonia during off periods (when medications are wearing off) can be painful.

Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.

Pain is one of the most under treated symptoms of PD.

Talking to your physician (start with your neurologist) about your type of pain can direct treatment.  Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack

Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate.  You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.

There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment.  Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise.  Of course, excruciating pain needs to be treated more aggressively and immediately.

Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia.  She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain.  The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions.  Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.

FATIGUE

Fatigue is another challenging non-motor symptom of PD.  Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes

Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue.  She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.

Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times.  Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.

Fatigue can increase one’s experience of pain and short temper.  Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.

Interventions and planning can help manage fatigue.  Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants

Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction

You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects.  Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.

Caffeine has been studied in reducing fatigue in PD, but found to be ineffective.  It has also been tested in treating daytime sleepiness with inconclusive effects.  If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.

QUESTION AND ANSWER

Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement.  (In 2016 they did not) know how long this effect lasts.  Perhaps existing DBS can be adjusted in order to treat pain.  As of 2016 animal trials were under way to learn more about this.

Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently.  On is when your medication is effective.  Off is when your medication has worn off.  As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day.  There are newer medications and medication formulations to combat this effect.

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real.  We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue.  Marijuana has the opposite effect so it hasn’t been studied for fatigue.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key.  If you’ve spoken with your neurologist and determined it is fine, then fine.  If you are using alcohol to sleep you have a problem because alcohol should not be self medication.  Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.

Q. How do you determine what kind of pain you are experiencing?  It could be normal aging or a PD symptom.  Is it important to distinguish?
A. It is important to distinguish.  In the past we didn’t think pain was part of PD.  Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain.  Sometimes, it is very difficult to tell the cause of pain.  Most of the time the source is multi-factorial (has many causes).  It can be medication effect in addition to orthopedic or arthritic.  An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment.  Be persistent!

Q.  What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body.  It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.

Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue.  We sometimes don’t realize what stressors are contributing to worsened PD symptoms.  Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.

Sad story about woman with PSP who tells daughter to “remember me dancing”

This is a sad story about a daughter whose mother has progressive supranuclear palsy (PSP).

Excerpt: “Remember me dancing,” my mom managed to tell my stepdad a couple months ago, as she was wheeled out the door headed to the place with round-the-clock care where she will die.

The full article is here:

www.tallahassee.com/story/news/2018/05/19/remember-me-dancing-mothers-long-goodbye/624773002/

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