Swallowing Difficulties and Medicines – Free Online Course

An online friend thought this Future Learn online course might be of interest to some of our group members.  It’s about administering medications to someone with swallowing difficulties (dysphagia).  This course is for healthcare professionals and family caregivers.  There is no charge to participate.  The details are below.



Dysphagia: Swallowing Difficulties and Medicines

This course will enhance the knowledge of any person involved in the administration of medicines to patients with dysphagia.

Why join the course?
Share knowledge about swallowing difficulties and medicines with other learners and professionals. This course offers an opportunity to network with other learners and with the educators through discussions and social networking features.

Duration:  6 weeks
2 hours per week
FREE online course

What topics will you cover?
* Definition and causes of dysphagia
* How to improve medicines administration for patients with dysphagia
* Supporting patients with dysphagia to take their medicines
* Different medicine formulations and the important considerations for patients with dysphagia
* Legal and ethical considerations when administering medicines to patients with dysphagia
* Standardising the approach to reviewing medicines in patients with dysphagia

What will you achieve?
* Describe the swallowing process and different causes of swallowing problems.
* Describe the different types of medicines formulations and how these should be administered to patients.
* Describe how tablets and capsules are designed to ensure that drugs are appropriately distributed in the body.
* Describe special considerations which need to be taken into account when giving medicines to older people and children.
* Describe the special considerations which are required to administer medicines via enteral tubes.
* Describe the law relating to the selection and administration of medicines.
* Describe how best to administer medicines to patients with dysphagia.

Who is the course for?
There are no requirements for this course, other than an interest in swallowing difficulties and medicines. The course will be of particular interest to carers, nurses and those in the field of medicine

Who will you learn with?
David Wright:  Professor of Pharmacy Practice at the School of Pharmacy, University of East Anglia. Research interests include the management of medicines and their administration to patients with dysphagia.

“Anticipatory Grief and Ambiguous Loss” – Webinar Notes

Though the webinar described in this post was focused on dementia caregivers, the content of this webinar applies to all caregivers as it relates to grief and loss.  It may also apply to those coping with a neurological diagnosis as well since certainly grief and loss are part of the package.

This is a follow-up to last month’s post about a Family Caregiver Alliance (caregiver.org) webinar on anticipatory grief and ambiguous loss.  These two terms are defined by FCA as:

* “Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death.”

* “Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.”

The webinar was recorded and is now available online:

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
March 29, 2017


In the webinar, speaker Kay Adams, LCSW, shares seven rules for getting out of emotional quicksand of grief and loss, plus one bonus rule:

1. Don’t panic.
2. Get emotional relief.
3. Reassess/reevaluate frequently.
4. Lay back and relax…and breathe.
5. Take your time.
6. Use a stick (support person/people).
7. Take frequent breaks.
8. Laugh through your tears.

Brain Support Network volunteer Denise Dagan listened to the webinar recently.  Here are the highlights from Denise’s viewpoint:

In this webinar, speaker Kay Adams makes the point that in the case of long-term illness both the care recipient and care giver suffer many losses.  It is only human to grieve those losses as they occur, and each person’s grieving process will be different.  She offers some strategies to aid in the process, all of which require getting past the first stage of grief, which is denial.

Educating yourself about the long-term illness with which you are dealing allows you to anticipate what demands will be made upon you as a caregiver.  It is the best defense against the belief that you can do it all by yourself.  Not trying to care for someone all by yourself over the entire course of a long-term illness will help prevent burnout and is the cornerstone of a good self care strategy.

Gathering others to help both carer and caree from the very beginning is the best way for both care giver and care receiver to stay socially engaged and involved in those things you love for as long as possible.  It provides you both the emotional support needed to best deal with the grief of losses along the way.

Denise’s extensive notes from the webinar are copied below.  The notes include the short question-and-answer session.  “The Story of Rosie and Vince” is referred to within Denise’s notes.  See an earlier post for that story.



Denise’s Notes

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
Speaker: Kay Adams, LCSW
March 29, 2017

Kay begins by giving a brief timeline of her work history and what brought her to working with dementia and grief, and the definitions of anticipatory grief and ambiguous loss.  She has several quotes from the recommended reading material which she shares throughout this talk.

As a practical example she reads “The Story of Rosie and Vince” about an older women who came into the clinic for cognitive testing due to memory changes.  Dementia ran in her family.  Her husband accompanied her to the appointment and had his own terminal diagnosis.  Rosie had been a successful professional and had been compensating well so her diagnosis was probable Alzheimer’s in moderate stages.

Consider that Rosie is grieving the impending loss of her husband due to his illness as well as the loss of herself to dementia, while Vince is grieving the loss of her wife’s ability to participate in their relationship and daily life as she had before her memory difficulties, along with the burden of caring for her and himself, both now with serious illnesses.

Signs and Symptoms of Anticipatory Grief:  Tearfulness, anger, loneliness, anxiety and depression, guilt, desire to talk or withdraw, fear, fatigue, emotional numbness, poor concentration, forgetfulness.

Recommended reading:
1. “Relentless Goodbye, Grief and Love in the Shadow of Dementia” by Ginnie Horst Burkholder.  Ginnie’s husband had Lewy Body Dementia.  The book started as a journal so it is a series of thoughts, experiences, etc.

2. “Rising Strong” by Brene Brown.

“Grief is the emotion we perhaps fear most.”  Three most foundational elements of grief are loss, longing and feeling lost.

* Loss of what could be
* Loss of what we thought we knew or understood about something or someone.
* Thoughts of:  This wasn’t supposed to happen.  This wasn’t how things were supposed to go.

* Not a conscious thing
* An involuntary yearning for wholeness, opportunity, for meaning
* For the opportunity to regain or even simply touch what we’ve lost
* Can come out of nowhere and be triggered by something you didn’t even know mattered.
* Speaker gained 30 pounds in 6 months between her dad’s diagnosis and death trying to fill the emptiness, loss, and longing.

Feeling lost
* Feeling your loved one is far away, uncertain, not sure what steps to take.

Grief requires us to reorient ourselves to every part of our physical, emotional and social worlds.  In caring for dementia we must do this repeatedly over the progression of dementia and losses in the abilities of our caree.

* The more difficult it is for us to articulate our experiences of loss, longing, and feeling lost, the more disconnected and alone we feel.

* Coping strategies— writing down experiences of heartbreak and grief.  Making clear to themselves what they were feeling, so they could articulate it to others without having to explain or justify their feelings.

If you speak with others about your grief it should be to those who get what you’re going through, not someone who has no clue.  If someone cannot relate, he/she is not helpful.

Stages of Grief (Elizabeth Kubler Ross)
* Denial
* Anger
* Bargaining/Guilt
* Depression
* Acceptance

[Denise’s note:  I would add since her book was published in 1969, it is understood these stages are not necessarily sequential, and over the many years caring for dementia (and other long-term illnesses) they will wax, wane, overlap, repeat, etc.  Be patient with yourself and others grieving around you.]

* Hoping the person is not ill
* Expecting the person will get better
* Convincing yourself that the person hasn’t changes
* Attempting to normalize problematic behaviors

* Frustration with the person
* Resenting the demands of caregiving
* Resenting family members who can’t or won’t help
* Feeling abandoned

* Wondering if you did something to cause the illness
* Feeling bad if you enjoy life, or feeling like a failure
* Wishing the person would go away
* Having unrealistic expectations of yourself… “I should have done _____ ”  Especially common to have promised never to put your loved one in a nursing home and feeling guilty that you have.

* Feeling overwhelmed by loss
* Crying frequently
* Withdrawing from social events of needing more connection with others
* Withholding (stuffing) emotions or displaying them more openly
* Women tend to feel more comfortable becoming depressed in expression of grief, rather than expressing them constructively.  Grief can also come out in erratic behaviors.
* Other symptoms can include: difficulty focusing, sleeping too much/too little, changes in appetite, increased irritability, feelings of worthlessness/helplessness/hopelessness, loss of interest or apathy, persistent sad or empty feeling.

* Learning to live in the moment & let go of the past
* Find personal meaning in caring for someone and railing the PLWD IS doing the best they can
* Embracing your fried instead of living in resistance
* Think of acceptance of home plate in baseball.  You run around the bases of denial, anger, bargaining, and depression and when you get to acceptance, you find some relief.
* Sadly, when caring for dementia you may grieve each loss separately as they happen one by one; bill paying, cooking, medications, dressing, eating, bathing, etc.

Quicksand (Emotional quicksand is the visualization concept of her grief talk.)
* Definition:  “Loose wet sand that yields easily pressure and sucks anything resting on or falling into it.”

Avoiding emotional quicksand starts by recognizing common quicksand areas:
* Receiving a diagnosis of dementia
* Loss of normalcy and time to yourself
* Loss or change in the relationship
* Loss of driving privileges and financial stability
* Loss of independence, and hope for the future that you had planned for.

Look for Ripples
* Be on the lookout for ground that appears unstable.  This requires looking ahead, not being in denial.
* Know that the grief is going to come.
* It’s not a matter of IF, but WHEN changes will be required to properly care for your loved one.
* It’s best to plan for these eventualities when you are not in crisis mode, and that requires acknowledgement of eventual diminished abilities on their part.

Test the ground in front of you with your walking stick.  Is there quicksand in front of you?
Your walking stick is a good friend, faith, support group, etc. to help you see the reality of the situation and offer emotional support.

How to get out of emotional quicksand; seven rules for survival:

1. Don’t panic.  Think of how thrashing about in quicksand makes you sink faster.
* Know that your feelings of anxiety, fear and overwhelm are normal.
* Find an outlet for your feelings and express them in an environment that feels safe.  Faith, or support group, especially.

2. Get emotional relief.
* If you are wearing something heavy (like a load of grief, guilt and regret), unstrap it immediately and drop everything.
* Understand that it is “real grief” that you need to work through.
* Figure out ways to “let go” so grief doesn’t stop you in your tracks and sink you.
* Daily relief suggestions: prayer, favorite TV show, coffee or tea break, meditation, exercise, a movie

3. Reassess/reevaluate frequently.
* If you feel your feet (or spirit) getting stuck…take steps backward and reassess before the quicksand takes hold.

4. Lay back and relax…and breathe.
* Sit down and lean back if your feet are stuck fast.
* Breathe deeply…it will help you remain calm and buoyant in hard times.  It actually helps you think better.

5. Take your time.
* Frantic movements will only hurt your cause.
* Take it slow so that the steps you do take really count when it matters.

6. Use a stick (support person/people)
* Carry a walking stick (a support person) any time you’re in quicksand country.
* It can be helpful to shift your focus from the anticipated decline or death of a person, to celebrating what you still have left.
* Cry and grieve the loss of what was, so you can move forward and be effective as a caregiver.

7. Take frequent breaks.
* Extracting yourself alone from quicksand can be exhausting.  Conserve your energy before you become too fatigued.
* Grief must be fully experienced before you can move on.  You need to take breaks and allow yourself ftp grieve the losses (and there are many!) along the way.
* Stay involved in your hobbies, faith, friendships, etc. to reduce stress and increase energy to be available for your caree.

Bonus rule 8. Laugh through your tears.
* It increases endorphins in your brain, which relieves pain and stress.  Caregivers have more cortisol (stress hormone) than others.  Endorphins balance the cortisol.

Being in resistance and in denial…only makes matters worse!

Reach out to others who understand and can help.  You can’t care for someone throughout the length of dementia alone.

Celebrate the good moments, and grieve what can no longer be – away from your caree, so you don’t increase their stress.

Use grief to build inner strength as care partners.

We ALL have our unique journey of grief.  Embrace it.

We must embrace pain and burn it as fuel for our journey.

Question & Answer Session:

Q: How can she help her siblings come to grips with mom’s dementia diagnosis, or must they come to acceptance in their own way?

A:  You can only gently, lovingly, nudge them toward acceptance by sharing your own experience and changes you are grieving about the changes in Mom.  Use “I” messages and your own reality to help them join you in the same place.  Every family member’s stage of grief is going to change over the course of changes in their mother, so be patient with everybody.

Q:  Well meaning friends and co-workers don’t seem to understand.  Visitors don’t see the worst.  Caregiving wife feels isolated.  How can she share with them what she’s going through?

A:  We each have our own unique grief journeys, and our society doesn’t discuss it or deal with it well.  Anticipatory and ambiguous grief is a new concept for many people.  Invite them to listen to what things are like from your perspective as their caregiver and what you’ve already lost in your relationship due to dementia.  If they can imagine being in your shoes, they will begin to understand and empathize.

Q:  Would it be a good idea to bring up anticipatory and ambiguous grief in my support group?

A:  Absolutely!  It is common for a caregiver to say, “Why should I feel sad?  He/she is the one with dementia.”  These people don’t realize they are grieving their loved one’s losses just as much as the person with dementia is grieving their own losses.  Making everyone aware that they are both grieving will reduce stress, bring people closer, eliminate ignorance of these types of grief, and help people work through their caregiving journeys.

Q:  In terms of quicksand and having something heavy (emotional baggage) you must drop.  That’s hard.  How to let go?

A:  Support groups, coffee with a friend, confession of your raw feelings whether to a person or your journal.  Educate yourself about the disease so you know what you’re dealing with and how to do the best you can.  Relieve these feelings daily in some way.

Q:  What are common mistakes people make when being thrown into the role of a dementia caregiver?

A:  Dealing with Alzheimer’s begins with memory issues, but that is only the initial symptom.  When given the diagnosis of dementia, you must understand that when the whole brain becomes involved there are more symptoms to come.  Underestimating the demands that will be put upon you and thinking you can care for someone by yourself is a mistake.  Learn what to expect and start gathering people along the way to help in as many ways as they can.  Both you and your caree will need them.

“Self-Diagnose Successfully” and Research Resources

Someone in our local support group sent me this article recently.  We’ve had quite a few individuals with neurological conditions or family members discover the diagnosis themselves rather than receiving a diagnosis from a physician.  In this article, “People with rare or baffling conditions offer tips on how to do your own research and work with doctors to find answers.”

I think tips and resources suggested by this article are great advice, even after you have a diagnosis you can believe in.

The general research resources suggested include:
* PubMed, pubmed.gov
* CiteFactor, citefactor.org
* Wikipedia, wikipedia.org.  Especially for footnotes.

The research resources specific to rare diseases (defined as fewer than 200,000 Americans affected) include:
* Undiagnosed Diseases Network, bit.ly/UDNInfo
* Online Mendelian Inheritance in Man, omim.org
* National Organization for Rare Disorders, rarediseases.org
* Genetic and Rare Diseases Information Center, bit.ly/NIH-GARD

The tips on finding answers include:
* trust what you see
* follow your instincts
* make connections
* dig into the research
* separate good research from bad
* find a community
* work with your doctor
* don’t give up

Here’s a link to the article:


Self-Diagnose Successfully: Patients sometimes understand their baffling conditions better than their physicians. Learn how to build a convincing case and work with your doctor to find answers.
by Richard Laliberte

Neurology Now
October/November 2016
Volume 12 – Issue 5 – p 16–20



Compassion fatigue – explanation and how to avoid

This post on The Caregiver Space (thecaregiverspace.org) from summer 2015 shares these suggestions for avoiding compassion fatigue:

* Assess your self-care.
* Stay physically active.
* Try deep breathing.
* Check your support system.
* Join a caregiving support group.
* Care for your spiritual self.

Here’s a link to the full post:


What is compassion fatigue?
by Harriet Hodgson
The Caregiver Space
Jun 22, 2015



Be prepared to answer “What are your goals for your care?”

This Washington Post article from a couple of years ago is circulating again.  The article is titled “A doctor discovers an important question patients should be asked.”  The important question is:  what are your goals for your care?  I think this is a great question we should ask ourselves before we ever set foot in a doctor’s office.  If we are prepared to ask and answer that question at the beginning of every doctor’s appointment, perhaps we’d have more control over our own care and perhaps the outcome.

Here’s a link to the full article:


Health & Science
A doctor discovers an important question patients should be asked
By Mitch Kaminski
Washington Post
March 9, 2015



“Guilt vs. Grace” – extending grace to ourselves (caregivers)

Here’s an excerpt from a short post on The Caregiver Space (thecaregiverspace.org):

“As caregivers, we show up every day. … Sometimes we do it well — other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should — or somebody else thinks we should. … Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.”

Here’s a link to the post:


Guilt vs. Grace
by Peter Rosenberger
The Caregiver Space
Apr 11, 2017 


“Caring for Aging Parents – Difficult but not Impossible”

A friend recently asked for advice on having “the conversation” with her father about his needing care soon.  I was sharing some of my favorite articles with her on this topic, and came across this one, which I don’t think I’ve shared here.  Though this article is from the website Free Alzheimers Support (free-alzheimers-support.com), it is not about caring for parents with dementia.  The article is dated “09/02,” which I’m guessing means September 2002.  In that case, it’s old but still has good advice.

The key points:
* have the conversation in advance
* watch for signs around the house
* ensure finances are under control
* watch for poor nutrition, injuries, or depression

Here’s a link to the article:


Caring for Aging Parents – Difficult but not Impossible
Author: Edward Francis and Foresthc.com
Free Alzheimer’s Support


“7 in 10 Will Need Long-Term Care. Will You?” (NextAvenue)

NextAvenue (nextavenue.org) has a description of ten scenarios that are lived by thousands, sometimes millions, of US adults.  They ask:  “Would you or your family be prepared if the circumstances happened to you?”

You can find the scenarios here:


7 in 10 Will Need Long-Term Care. Will You?
Try your hand at looking into the future to find challenges and solutions
March 21, 2017

The scenarios are things like “you develop Alzheimer’s,” “you develop Parkinson’s,” and “you experience several falls and must move to assisted living.”

“Communicating Effectively in Challenging Situations” – chapter 4 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  The book is available in both English and Spanish.  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter.

The title of chapter four is “Communicating Effectively in Challenging Situations.”  Topics addressed include:  setting limits and asking for help; expressing and responding to criticism or anger; communicating with the doctor; and dealing with challenging communications styles (passive/peace keeper, aggressive/pit bull, factual/computer).

This chapter contains lots of useful worksheets.  You’ll need to purchase the book ($30) to obtain the worksheets.

Here’s Denise’s report on chapter four.



Notes by Denise

The Caregiver Helpbook
Chapter Four – Communicating Effectively with Others

Communicating to take care of you means setting limits and asking for help.

If you have not been setting limits and asking for help you may find others don’t take you seriously at first.  Now that you’re in a caregiving situation, failing to do so puts you at risk for burnout that could result in becoming unable to provide for your caree.  Long-term stress from doing more than you should will, eventually, affect your health.  The effect on your health can manifest as anything from feelings of resentment and fatigue to illness and death.

Sadly, you may lose closeness with someone because you begin to set limits.  If that happens, ask yourself, “Am I better off without a relationship completely defined by what he/she wants?”

There is an evaluation of your current style of limit-setting on page 63.  And, of course, advice for how to start firmly setting limits:

* Start small, with people outside your family and with small matters, like telling a caller you can only visit for five minutes.
* Start with easy people.  Practice saying a firm “no” to someone unrelated to you, like a fundraiser.  You can even be polite, “I appreciate the good work you do, but I cannot donate at this time.”  Just keep repeating your statement and they will give up.
* Start with easy situations and/or tasks that you don’t like.  What have you got to lose?!  If you enjoy volunteering but don’t care for the schedule or task you’ve been assigned, try saying something like, “I enjoy volunteering but I must cut back.  I’d be happy to help one Thursday a month with…” and specify what task you would prefer doing.

Once you’re more comfortable with this, work up to family situations, such as who will host holiday dinners.

Be clear about your limits:

* Use “I” statements and be as specific as possible.  The formula is: “Up to this point I can do _____.  Beyond this point I will do _____ or _____ happens”  Example:  “I am happy to stop by after work tonight but I have to leave by 6:30p.”
* It’s up to you to start winding down your conversation or activity a few minutes before 6:30p and get out the door on time.
* That way, people will take your limits more seriously in the future.

Offer choices within your limits as a way to replace what you can’t do with what you can and are willing to do.  The formula is: “I am unable to do _____, but I can do _____ or _____.  Which do you prefer?”  Example: “I can’t take you shopping today, but I can take you either Thursday afternoon or Saturday morning.  Which is best for you?”

Make no excuses.  It sounds apologetic or wishy-washy, and the person making the proposal may keep badgering you.  Simply state, “I’d like to do that, but for now I can only handle these three things…,” “I appreciate your suggestions/invitation/etc.  Right now I can’t fit that into my day/week.”  or, “I need to think about it.  I’ll let you know tomorrow.”

Asking for help.  If you feel uncomfortable asking for help, consider the following questions about asking for salt:
Yes or No : Do you expect people to pass the salt before you ask for it?
Yes or No : Do you blame people for not knowing you want salt?
Yes or No : Would you plead, hint, or whine to get the salt?

I love this!  It really puts it in perspective, doesn’t it?  Ask for help in the same matter-of-fact tone you would ask for salt.  Remember to use your “I” statements to make clear, specific requests.  “I need more help,” is too vague.  “I would like to attend church this Sunday.  Would you stay with Grandma from 9:00am until noon?” is specific.  Don’t be wishy-washy like, “Could you think about staying with Grandma?” or, “It’s only a thought, but I’d like to go to church…”  And, say, “Thank you!”

Before you ask for help, put a little thought into it to improve your chances of getting a, “Yes”:

* Consider the person’s special abilities, interests, likes and dislikes.  Don’t assume because someone works in the medical field they want to help with hands-on caregiving.  Tasks unrelated to direct caregiving are easier for some.  If someone enjoys cooking but dislikes driving, your chances improve if you ask them to help with meals rather than errands.

* Resist asking the same person repeatedly.  You may be taking advantage because they have difficulty saying no.

* Consider the person’s special needs.  Other obligations may limit time and/or energy to help you.  If you feel someone in that position is really the best person to ask, be sensitive, “I need help with _____.  I know you are very busy and I’m concerned about asking too much of you.  Would helping me a few hours during the week be more than you can do comfortably?”  Out of concern for everyone’s health, you may decide it’s time to hire in-home help.

* The best time to make a request is when the person being asked is not tired, hungry, stressed, or busy.

* Prepare a list of things that need doing (cooking, errands, yard work, caree visitors, etc.).  Post it on the fridge.  When people ask how they can help, show them the list and let them pick what they prefer and have time for.  Put it on the calendar so it gets done.

* Be prepared for hesitance or refusal.  Don’t let it hurt your feelings.  Give them an out.  Ask, “Would you like time to think about it?”

Expressing criticism.  Usually, how criticism is given affects people more than the criticism itself.  Constructive criticism helps people learn.  It focuses on problems.  It shows you care enough to level with a person.  It is courteous, respectful tone makes your words worth remembering.  Here are some tips:

* Address problems promptly
* Resist offering an opinion about the person’s motives for doing what he/she did
* Avoid mind-reading and judging the person’s motives for doing what he/she did
* Avoid making comparisons with others
* Avoid raising questions about the person’s loyalty or commitment.

In delivering constructive criticism, count yourself (or others in the family) as guilty of doing the same thing, and make everyone partners in solving the problem at hand.  Use your “I” statements to describe the problem with specifics for what you’d like done, instead, “I find water and damp towels on the bathroom floor after grandpa showers.  I worry about slipping and tripping.  Please use the damp towels to dry the floor, then put them in the laundry.  I will be making the same change when I bathe him.  Thanks.”

Phrase questions carefully so they don’t hurt feelings.  Asking why someone did something sounds accusatory.  Questions beginning with “how,” “what,” and “when” sound like information gathering and offer a good entry to broaching a problem.  Example, “How do you usually do this?” “What do you think went wrong?” “When does the problem arise?”

Offer face-saving comments to protect a person’s pride and feelings.  Example: “I can see how a mistake could be made.  The directions are confusing,” or, “This is easy to forget, especially when it’s a busy time.”

End on a positive note by mentioning helpful contributions the person has made and expressing gratitude for their efforts to change.

Responding to criticism, especially when someone isn’t as respectful toward you:

* Think about the merits of the criticism, not just how it made you feel.  If they have a point, maybe you should apologize.
* Use your aikido skills if the criticism is valid.  Ask what needs to change, “I need to understand what you want done differently.”
* Don’t take unjust criticism to heart.  You can ignore it by saying, “I find your remarks interesting,” and drop the subject.  If that doesn’t work, calmly assert yourself by returning the problem to the critic, “It would help me if you would share how you would have done _____.”  Or, to deflect try, “That is another way of looking at this,” or, “I’ll think about what you said.”

Responding to criticism from the care receiver:
* Use your aikido skills to disarm by aligning, empathizing, agreeing, redirecting to the actual problem, and suggesting solutions.
* Calmly interrupt and suggest discussing it later, or excuse yourself and leave.  Offer them a snack or a drink, and step out.
* Suggest the critic put his/her statements in writing.  They usually just want to vent, but what they write may be worth addressing.

Expressing anger.  “The way to express anger effectively is to share feelings in a positive way so people hear what you say versus hearing only your anger.  It requires taking time to regain perspective and to prepare.  Begin by taking a look at what triggers your anger consistently.”  Think of ways to cool off before you say anything.  Breathing exercises, counting to ten, take a walk, etc.  Then:

* Use “I” messages in a non-threatening manner.  Be aware of your body language so you don’t tower over people.
* Avoid “you” messages which imply blaming, accusing, and mind-reading.
* Speak in a normal tone of voice.  Talking fast and/or loudly implies anger, regardless of your words.

Responding to anger.  The goal is to defuse the anger and calm the situation.  Aikido is effective.  Other tools can work, but they can also make people angrier, like:

* Excuse yourself and leave the person alone.  Some people calm down with nobody to yell at, others get more angry at being ignored and disregarded.  They may follow you so go where there are others for safety in numbers.
* Use humor to ease tensions.  Humor can recast unfairness into nonsense and help people rethink a problem, but making light of a situation can be insulting.
* Changing the subject can also be risky because the person may think you don’t understand or don’t care.  They need to feel heard before you change the subject.  “You have good reason to be upset.  I have news I hope will help you feel better…”

Expressing yourself under special circumstances

Talking on the Telephone.  Miscommunications can occur because you don’t have body language and facial expression to help understand what the person means or feels.  You can ask to clarify like, “It sounds like you mean (want, need, feel) _____.  Am I right?”

* Ask open-ended questions like, “What do you mean?” or, “What do you think about…?”
* Confirm what was meant, “Are you saying…?”
* Stop other activities, like housework or driving, to give your undivided attention
* Take notes so you don’t forget, especially if the discussion covers a lot of details.
* Summarize the conversation at the end to clarify everyone is on the same page.

Communicating with the doctor – Before your appointment:

* Prepare your questions with most important issues at the top.
* Consider other reliable sources of information, like your pharmacist or your doctor’s nurse, your support group, and professional (Parkinson’s) organizations so you use your appointment time for issues only the doctor can help with.
* Make sure appointments meet your needs by telling the receptionist the reasons for your visit so enough time is scheduled.  First appointment of the day, first after lunch and last appointment of the day are when doctors are usually running on time, making your wait shorter.
* Call ahead to see if the doctor is running on time.  Especially remind reception if your caree has a difficult time waiting.
* Take someone with you to help ask questions and remember answers.
* Build a relationship with the office staff for more personal service.  Send a holiday card, or a thank you note from time-to-time.

Talking with the doctor:

* Discuss your main concerns first to be sure you have time to get to them.
* Be concise, clear, and frank.  The doctor will ask questions for necessary details.
* If you want a second opinion, ask for it.  “My _____ and I have discussed the importance of getting a second opinion.  Can you refer us to someone (outside this clinic)?”
* Get your questions answered, especially about tests and treatments and the reasons for them like, “What do you expect to learn from this test?” “When can I expect to hear the results of the test?” “How will I feel after this procedure?” “Are there other options to having this test?”
* Ask about treatment plans, including medications and treatments that don’t seem to work, and alternatives for those you find burdensome.  Ask for clarification about diagnosis and treatment plan, the reasons it was recommended, what it will accomplish, etc.

When getting needed medical information about your caree is a problem.  Lack of trust on the part of the care receiver may be out of a fear of losing privacy or control as he/she ages.

* Tell your family member you cannot help without certain information from his doctor.  If they still refuse try, “I’d like your permission to talk to your doctor about…,” “I can’t help you without talking to your doctor,” or, “I will have to tell your doctor I can’t help carry out his treatment orders without knowing what’s wrong.”
* Get your doctor involved.  Make it clear you are requesting only the information required to help your relative.  With the doctor’s reassurance of that limit, your caree may agree to let you speak directly to the doctor.
* Talk to a trusted friend, relative, or religious advisor to enlist their aid in convincing your caree to open up a bit.
* Respect your relative’s need for confidentiality.  Ask yourself, “If I had this problem would I want it discussed with others?”  If you still aren’t sure ask your relative before discussing it with others.

Communicating with older adults

The hearing impaired
* Approach the person so he/she can see you to avoid startling them
* Stand or sit three to six feet away from them
* Get the person’s attention before speaking
* Place yourself so the light is on your fact for better visibility of your lip movements, facial expressions, and gestures
* Speak at a normal rate using normal lip movements
* Do not shout.  That distorts sound, making it more difficult to understand you.
* Use one sentence explanations
* Use gestures (nod, point, beckon) to demonstrate what you mean.
* Avoid eating, smoking, and turning away while speaking
* Do not speak directly into his/her ear.  You will be louder, but not clearer.
* Reduce background noise and activity
* Remember, hearing aids make all sounds louder, not just your voice.
* Be aware of false impressions.  Head nodding doesn’t necessarily mean, “I understand.”
* Give time for the person’s response
* Explore adaptive and assistive listening devices, including pocket size amplifiers and speakers

The visually impaired
* Announce your presence.  Speak as you enter a room to avoid startling them.
* Ask if the lighting int he room is adequate
* Speak normally and directly, unless he/she is also hard of hearing
* Use a gentle touch, if appropriate, to help him/her focus on you
* Tell him/her when you are leaving the room
* Obtain low-vision aids to help the person make the best of any remaining vision.

The memory impaired
* Post pictures, instead of words, like to identify the bathroom door from the coat closet or bedroom.
* Choose a time to talk that is best for the person, perhaps when little else is going on, they are rested, fed, and medications are active.
* Remove as many distractions as possible
* Speak directly and clearly, not subtle or passive.  Not, “Its been awhile since you’ve been to the doctor,” but, “The doctor wants to see you today.  I’ll be happy to take you.”

If the care receiver mistreats you or uses helplessness to control you, you will likely feel resentment.  You will either do less and less for them to avoid negative feelings, or your health will suffer from the stress.  It can also lead to increased use of medications both to control the caree’s behavior and reduce the caregiver’s stress, neither of which is good.  It may lead to the institutionalization of the caree either due to the caregiver’s frustration with their behavior or ill health due to burnout.  Learning these good communication skills may help manage the interactions between you.

Challenging communication styles

Passive/peacekeeping style people hope and hint rather than speak directly.  They use apologetic, self-defeating language like, “I don’t mean to sound…” and their personal needs are nearly always second to others.  Its easy to fall into when you feel the needs of the person you’re caring for outweigh your own.  Their motive is to please, not be deceptive.  They may also:

* Seek approval and want to stay in another’s good graces
* Avoid confrontation.  They may even go so far as to agree with their critics.
* Feel they are to answer for everything that goes wrong
* Feel they are responsible for other’s happiness
* Be unable to ask for things and therefore use compliments or guilt to manipulate others

Tools for communicating with peacekeepers:

* Be clear that is is safe to speak openly to you without fear of upset.  Use aikido style tools to encourage them to speak openly.
* Recognize how you come across.  Do you seem judgmental or controlling?  Try saying, “Tell me more. I didn’t realize,” “I won’t get upset if you tell me…,” or, “I want to understand.  I won’t criticize.”
* Use direct, calm, unhurried speaking style.  Aikido can help here, too, “I understand how (sad, annoying, worrisome) that is.”
* Give them your undivided attention

If you use this style you are voluntarily giving up your rights to a role in decision making, advising others of your limits and needs, and the information and help you want and need from professionals, family, and friends.

Aggressive/Pitbull style is focused on getting your way and ignores the feelings and rights of others in order to maintain power and control over others.  At times, people who need assistance use this style to regain some control over their lives.  They may:
* Use anger and temper tantrums to intimidate
* Use criticism and ridicule to discourage the efforts of others
* Make jokes at other’s expense to undermine their self-esteem
* List failings for the other person’s “own good” injuring their self confidence
* Blame others by using, “you always,” “you never,” “you should,” etc.

Tools to stop the aggression
* Wait until they yell themselves out.  He/she will eventually run out of things to say.
* Reduce their need for aggression.  If they want control, give them choices, and encourage independence.
* Try aikido-aligning communication style
– Concentrate on areas of common concern or agreement to align/empathize with them.
– Ask about feelings, if agreement doesn’t work, “I need to know what upset you.”
– When attacked indirectly, as criticism ‘for your own good’ try, “Thank you for sharing that. I’m always open to new ideas.”
– Deal with indirect put-downs directly.  “Just kidding,” commends should be put a stop to them, “I know your joke wasn’t meant to insult me, but jokes made at my expense aren’t funny and I don’t want it to happen again.”

If you use this style, remember it distances people, both family and professional caregivers.  It reduces assistance from family and/or friends helping with your caree.  If used by the caree, it reinforces his/her belief that nobody cares and can lead to premature institutionalization.  The best way back on track is to acknowledge your misstep, apologize, and switch to “I” statements.

Factual/Computer style avoids showing true feelings and express little or no interest in others’ feelings, either because they are unable or unwilling.  They speak in impersonal terms.  The way to respond to them is to adapt to it, not to make them express their feelings.  Using assertiveness or mirroring their factual style both work well.

* Imitate their factual style.  Change, “How to you feel about that?” to, “What do you think about that?”
* Give the person credit for being right.  They will generally become more receipting to different options and ideas.
* Give the person intellectual tasks like, researching resources, and dealing with finances and/or taxes.

If you use this style you are less likely to receive praise or approval for your efforts unless you ask for it.

If you find some areas in this chapter you could improve upon, go back to your chapter one skills and set some goals and an action plan.  Include with whom, what, and when you will apply a communication tool.  Page 87 includes a worksheet for your action plan.

“Why we Need to Stop Saying, “I’m Sorry For Your Loss” (Elephant Journal)

Here is one author’s point of view that we should stop saying “I’m sorry for your loss” when meeting a bereaved person.  The author offers five options:

1. I’m sorry you’re suffering right now, but I’m here with you and willing to help any way I can. Is there anything you need right now?

2. I’m sorry for whatever challenges might lie ahead for you, but I’m here and willing to help. Would it be okay if I call next week just to check in with you?

3. Please accept my deepest condolences. I can’t imagine what you must be going through right now, but I know enough about grief to know that it can be very challenging. Don’t hesitate to call me if there’s anything I can do to help.

4. I’m so sorry to hear about _____. I’m sure you’re going to miss him/her terribly. How are you holding up?

5. I know there’s nothing I can say right now to make things better, but I also know that having someone to talk to at times like this is really important, so don’t hesitate to call me whenever you need to.

Here’s a link to the full article:


Why we Need to Stop Saying, “I’m Sorry For Your Loss.”
by Ed Preston
Elephant Journal
Apr 2, 2017

Food for thought,