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.