“I’ve had it up to here! Coping with stress while caregiving” – Webinar Notes

This Thursday, I listened to Janet Edmunson’s webinar titled “I’ve had it up to here! Coping with stress while caregiving.”  The recording is available, and it’s well worth 45 minutes of time.

I’ve jotted notes below while listening to the webinar.  Janet’s main suggestion is to use the 4As to cope with your stress.

There were fewer than 60 participants nationally in the webinar so there weren’t many questions.  I’ve included the small Q&A below.

You have to register for the webinar first and then you can link to the recording.  See:

attendee.gotowebinar.com/register/5425596579784515073

Robin

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Robin’s Notes from

“I’ve had it up to here! Coping with stress while caregiving”
Webinar by
Janet Edmunson, M.Ed., Affirm Yourself, affirmyourself.com
January 26, 2017

Quotation by Erma Bombeck:  “If life is a bowl of cherries, what am I doing in the pits?”

What is stress?  Response of the body to any demand or stressor made upon it.  We have a lot with caregiving.

The body’s response to stress if “fight or flight.”  Body systems rev up – heart rate goes up, blood pressure goes up, muscles tighten to prepare for action.  Fight = angry, argumentative.  Flight = withdraw socially, watching TV excessively, drinking too much alcohol.

Stress response happens in amygdala.  Theory that stress response triggers inflammation, which triggers heart disease, etc.

When stress becomes chronic (one crisis after another), it can cause long-term health problems.

Stress is different for us all.  Stress starts for our unique perceptions.  Stress begins with us.

To combat the response, we must be aware of our perceptions and try to have a more realistic view of them.

First activity:  write down what specific things are stressing you lately.

Symptoms of caregiver stress (according to Alzheimer’s Association – but these apply to caregivers of those with any condition):  denial; anger; social withdrawal; anxiety; depression; exhaustion; sleeplessness; irritability; lack of concentration; health problems (muscle tension; headache; stomach problems; heart attack; stroke).

“Stress makes us stupid.”  Our brain loses focus when concentrating on the stress.

These symptoms are red flags that are alerting you that you need to do something about this stress level.  It can’t wait.

Add:  behavioral issues; how you think and feel as well as physical issues.

4-A model for coping with stress:
Avoid
Alter
Adapt
Accept

Phil Sweet’s article was helpful in developing this webinar.  (She found it by googling “4 As.”)

AVOID

Avoid unnecessary stress.  Some stressors we should not avoid.

– Learn to say “no.”  Caregiving or household tasks can be delegated to others.  If you get overwhelmed, you may feel resentful.

– Avoid people who stress you out.

– Control your environment.  Example – turn off the evening news if it makes you anxious.  Example – avoid traffic if it stresses you out.  Example – if you don’t like grocery shopping, try grocery delivery or ask friends to help you with grocery shopping.

– Stop time wasters.

ALTER

Alter the situation if you can’t avoid the stressor.  Change the way you communicate and operate in your daily life.

– Be more assertive.  Don’t be a passenger.  Anticipate and prevent problems.  Set “care limits” by being assertive.  Example – insist on professional caregivers even when husband pushed back.  Example – insist on respite time even when care recipient disagrees.

– Express your feelings.  May be impossible if dealing with someone with dementia or executive function.  Use “I” statements.  Example – “I feel frustrated with XYZ.  Is there something we can do?”

– Be flexible and willing to compromise.  Especially true if you always want to be in control.

– Manage your time better.  Poor time management adds to your stress.  Constantly prioritize your tasks and even your relationships.  Drop the unimportant tasks and relationships off your to-do list.  Task:  write down 3 things you want to do more of, and write down 3 things you could do less of.  This gives you an idea of what’s most important and what can be dropped off the list.

ADAPT

Important study on happiness:  only 10% of happiness is due to external circumstances (money, etc).  50% is how we see the world based on our heredity (optimistic, pessimistic).  Still leaves 40% – we can control with our own attitudes and choices.  We can choose our responses!

Adapt means changing yourself.

– Reframe problems.  Try to view stressful situations from more positive perspective.  Example – be thankful for the patience you are learning.  Example – to cope with Charles’s yelling, think about why Charles was yelling rather than responding emotionally to the yelling.

– Look at the big picture.  Can you say “oh well”?

– Adjust unrealistic perfectionism.  Example – to-go food rather than home-cooked meals.

– Focus on the positives.  Think about what you appreciate in life.  At the end of each day, ask yourself “what went well?”  Savor these positives.

Question:  Was it a bad day?  Or was it a bad five minutes that you milked all day?

ACCEPT

– Don’t try to control the uncontrollable.  We couldn’t change the fact that Charles had a neurological condition but we could change our attitude about that and give Charles the best life possible.  Look for meaning or gifts that struggles bring.  If you look, you will find something!

– Accept mistakes.  Usually not the end of the world.  Or ask for forgiveness.

– Learn to forgive.  Maya Angelou changed the word to “give for”; she gave something good to someone else.

– Share your feelings.  Join a support group, talk to a friend, or meet with a professional therapist.

5th A sometimes used – ADOPT

– Make time for fun and relaxation.

– Exercise.  Can affect stress hormones.  Can act as an anti-depressant.

– Eat well.  Keeps you strong.

– Get enough sleep.  Make this a priority.  If you can’t get to sleep, try deep breathing, counting, song lyrics (with visualization), read, jot down worries, etc.

YOUR ACTION PLAN

What of these suggestions will you adopt?

Quotation by Terri Guillemets:  “Stress if the trash of modern life – we all generate it, but if you don’t dispose of it properly, it will pile up and overtake your life.”

Q&A

Q:  I am dealing with a bad attitude 24×7.

A:  Could ask “what’s going well?” to try to get a care recipient to appreciate positives.

Get professional help.  If not, at least find a friend who is willing to let you dump on them.

Avoid the home.  Bring someone in to sit with spouse, if needed.

Q:  Spouse is combative and resists caregivers.

A:  Don’t take it personally.  Your well-being is as important as spouse’s.

Are there ways to get help that wouldn’t be direct caregiving?  Examples – housework, grocery shopping, yard work.

Sometimes care recipients soften up when it comes to having caregivers in the home.

Need to find support for self.

NEXT WEBINAR:
Tuesday, September 19, 4pm CA time – “Feel empowered while caregiving”

Instructions for moving a patient from bed to wheelchair

Here are instructions in the US government’s medical encyclopedia for moving someone from a bed to a wheelchair.  The instructions assume the person can stand on at least one leg.

Online friend Vera James recently posted this link to an online MSA support group.

Robin
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medlineplus.gov/ency/patientinstructions/000428.htm

Moving a patient from bed to a wheelchair

Follow these steps to move a patient from bed to a wheelchair. The technique below assumes the patient can stand on at least one leg.

If the patient cannot use at least one leg, you will need to use a lift to transfer the patient.

Preparation
Think through the steps before you act, and get help if you need it. If you are not able to support the patient by yourself, you could injure yourself and the patient.

Make sure any loose rugs are out of the way to prevent slipping. You may want to put non-skid socks or shoes on the patient’s feet if the patient needs to step onto a slippery surface.

The following steps should be followed:

1.  Explain the steps to the patient.

2.  Park the wheelchair next to the bed, close to you.

3.  Put the brakes on and move the footrests out of the way.

Getting a Patient Ready to Transfer
Before transferring into the wheelchair, the patient must be sitting.

Allow the patient to sit for a few moments, in case the patient feels dizzy when first sitting up.

The following steps should be followed when getting ready to transfer a patient:

1.  To get the patient into a seated position, roll the patient onto the same side as the wheelchair.

2.  Put one of your arms under the patient’s shoulders and one behind the knees. Bend your knees.

3.  Swing the patient’s feet off the edge of the bed and use the momentum to help the patient into a sitting position.

4.  Move the patient to the edge of the bed and lower the bed so the patient’s feet are touching the ground.

Pivot Turn
If you have a gait belt, place it on the patient to help you get a grip during the transfer. During the turn, the patient can either hold onto you or reach for the wheelchair.

Stand as close as you can to the patient, reach around the chest, and lock your hands behind the patient or grab the gait belt.

The following steps should be followed:

1.  Place the patient’s outside leg (the one farthest from the wheelchair) between your knees for support. Bend your knees and keep your back straight

2.  Count to three and slowly stand up. Use your legs to lift.

3.  At the same time, the patient should place their hands by their sides and help push off the bed.

4.  The patient should help support their weight on their good leg during the transfer.

5.  Pivot towards the wheelchair, moving your feet so your back is aligned with your hips.

6.  Once the patient’s legs are touching the seat of the wheelchair, bend your knees to lower the patient into the seat. At the same time, ask the patient to reach for the wheelchair armrest.

If the patient starts to fall during the transfer, lower the person to the nearest flat surface, bed, chair or floor.

Alternative Names
Pivot turn; Transfer from bed to wheelchair

References
American Red Cross. Assisting with positioning and transferring. In: American Red Cross. American Red Cross Nurse Assistant Training Textbook. 3rd ed. American National Red Cross; 2013:chap 12.

Timby BK. Assisting with basic needs. In: Timby BK, ed. Fundamentals of nursing skills and concepts. 10th ed. Philadelphia, PA: Wolters Kluwer Health: Lippincott Williams & Wilkens; 2013:unit 6.

Review Date 10/29/2015

“Everything You Need to Know About Caregiving for Parkinson’s Disease” – Book Review

Brain Support Network volunteer Denise Dagan recently read the book “Everything You Need to Know About Caregiving for Parkinson’s Disease,” and shared a short review.

Robin

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Denise’s Review of

“Everything You Need to Know About Caregiving for Parkinson’s Disease”
by Lianna Marie, published 2016

This book is #6 on Caring.com’s list “8 of the Best Books About Caregiving” published in 2016.

The author is a fellow caregiver, Lianna Marie.  Her mother has had Parkinson’s for 25 years.  The writing style and organization is direct, no-nonsense, concise, and comprehensive.  The font is even a bit bigger and double-spaced for older eyes.  I quite enjoyed the short, thoughtful, quotes from famous people at the beginnings of each chapter.

My criticisms would be that it seems not to go into depth on any topic, but wait until you get to Part 5, “Getting Practical: Caregiving for Parkinson’s.”  Here’s where we get to the meat of this book.  Also, it’s a tad repetitive, but she’s emphasizing some points, and topics do overlap.  Finally, she only cites [only two websites as sources of online information].

The organization is in nine parts:

1. Caregiving 101 – only nine pages, but they spell out the practical burdens of caregiving and ask you to consider whether you should take on the task.

2. What to Expect – You’ve said, “Yes.”  Now, you need a plan.  Get documents in place, make a budget, set boundaries, and get help.

3. Emotional Aspects – Notice this loop: “…you get stressed out from your caregiving duties, which then makes your loved one stressed out, causing them to lose mobility, which leads to both of you being more stressed out, and so on.”  Avoid the loop by taking her advice.  I also like that she talks specifically about guilt, and resentment in this section.

4. General Caregiving – “Caregiving is a process of trial and error.  You will make mistakes from time-to-time, but learning from them is the key.”  This section briefly discusses some things not usually covered in a caregiving book, like, How to help when help isn’t wanted, What not to do when caregiving, and What to do when no one will help.  I yearned for more detail on that last topic, but a book can’t solve such complex problems, and it does get you thinking along the right lines.

5. Parkinson’s Caregiving – The meat of the book begins by giving a heads-up for early, mid, and late stage Parkinson’s caregiving issues, while subsequent sections get into specific tips on Home safety, Mobility, Preventing falls, Freezing, Medications, Hallucinations, Weight loss, Drooling & dry mouth, and Swallowing.  Her advice is spot-on.

6. For Spouses – Unique to this section is setting boundaries.  Friends, family, even doctors and nurses may say, “Don’t worry, the wife/husband will do it,” but everyone has limits and it’s okay to express that you’re completely overwhelmed.  Also of interest is a discussion of anger and resentment, even how Parkinson’s may affect your sex life.

7. Getting Help – In addition to the usual respite and housing options, this section addresses disability benefits and how to pay for caregiving costs with web links to US, UK, Canada, and Australia government aid sources.

8. Caring for You – You can’t be there for your family if you don’t put your own self-care first.  In finding the will to make time for your own self-care  you may have to overcome personal barriers, like negative thinking, feeling selfish, or hollow promises (like, “I’ll never put you in a home.”).  Uniquely, this section includes tips on how to avoid caregiver weight gain.

9. Tough Caregiving Decisions & Issues – She saved tips on the biggest issues for last:  When is it time to take away the care keys?  Convincing someone they need in-home care. The dreaded nursing home decision.  Keeping the peace in the family.  Parkinson’s and dementia at once.  Anticipatory grief.

Caregiver Resources – US, UK, Canada, and Australia  caregiver organizations, financial resources, housing help, online caregiver resources, online forums/support groups.

Helpful Gadgets for People With Parkinson’s – grabbers & reachers, LaserCane, Medical Alert System, fall detectors, handheld massagers, big button cell phone, automatic pill reminders, and Skype.

– Denise

“Worker Bees, Watchers & Talkers~ Which Kind of Caregivers Are You?”

Barbara Karnes, RN, is a well-known hospice nurse.  She has a website (bkbooks.com) that posts questions from healthcare workers (often hospice staff) and Barbara’s answers.

In Monday’s post, the question is about the main caregiver getting burned out and becoming irritable.  In Barbara’s response, she said that there are different roles to be played within a family – worker bees, players, watchers, talkers, etc.  We get stuck in those roles and burn-out is common, especially among worker bees.
At our caregiver support group meetings, we also see a lot of worker bees. Perhaps Barbara’s suggestions will help.
Here’s a link to the Q-and-A:

Robin

“The Right Way to Fall” (New York Times)

Here’s another interesting article from Tuesday’s New York Times about the “right way to fall.”  Apparently young kids are the best fallers because they have no fear or embarrassment; they don’t try to catch themselves.

The article mentions seeing a physical therapist to assess your weaknesses and prescribe home exercise for strength and agility.

Besides working with a PT or a fitness instructor knowledgeable about neurological disorders, note that there are also lots of fall prevention classes taught in many communities.  “A Matter of Balance” classes address the fear of falling.  For a list of fall prevention classes in Northern Caifornia, see:

parkinsons.stanford.edu/fallprevention.html

Falling tips given by the NYT article are:

* “The number one thing to remember … is to protect your head. So if you find yourself falling, pivot to your side and tuck in your head.”

* “The other thing to avoid … is ‘foosh,’ an acronym for ‘falling onto outstretched hands.’ If you do that, all the force of impact will be concentrated there, raising the risk of breaking your wrist.”

* “Instead, if you feel yourself falling, experts said you should bend your elbows and knees and try to take the hit on the fleshiest parts of your body, like the side of your thigh, buttocks and shoulder.”

* “The key is to not fight the fall, but just to roll with it, as paratroopers do.”

* “Difficult as it may sound as you’re hurtling toward the ground … experts said it’s important to relax as you fall. You’re less likely to hurt yourself if you soften up all your muscles and exhale.”

Note that quite a few of the comments called this “hogwash!”  So “reader beware.”

Here’s a link to the full article — you be the judge!

www.nytimes.com/2017/01/24/well/move/the-right-way-to-fall.html

WELL | MOVE
The Right Way to Fall
New York Times
By Kate Murphy
Jan. 24, 2017

Robin