Why is it often difficult to talk to our elderly parents?
Communicating with our parents should be easy. After all, most of us have been doing it for most of our lives.
But that often turns out not to be the case, especially if they’re elderly. Personal — sometimes taboo — topics may need to be discussed — their health, their driving capabilities, their money, advance directives, wills and other legal preparation for their end-of-life planning, moving into a smaller home or assisted living facility — things we will probably all face at some point in our lives.
When Alzheimer’s or another dementia is NOT a factor
- People communicate primarily by emotional states. We make judgments about what a person is saying, or is about to say, based on their emotional demeanor — body language, facial expressions, eye contact, level of distractedness, tone of voice. Always speak in a calm manner with an upbeat tone of voice, even if you don’t feel that way. If you sound angry or agitated, they will often mirror that feeling back to you and then some.
- Don’t talk down to them as if they were a child. Respect the fact that they are an adult, and treat them as such. Think of your own gut reaction if someone were to speak disrespectfully to you. Remember, when we judge someone, their mind and heart close down.
- Be sure to allow enough time for your conversation, regardless of how rushed you feel, so that your parent doesn’t feel that they were pushed into making a decision. A good rule of thumb is to allow twice as much time as you think it will take. Be patient and compassionate.
- When you need to create an opportunity to talk, don’t ambush your parent. At least begin with something like: “Do you mind if I asked you about ____________?” It gives your parent a moment to think and to plan emotionally for what might be a touchy conversation.
- Always approach them face-to-face and make eye contact. It is vital that they actually see you and that their attention is focused on you. Always approach from the front as approaching and speaking from the side or from behind can startle them.
- Ask: “Do you mind if we sit down?” This allows you to be at their level so that your head is on the same level as their’s. Don’t stand or hover over them — it can be intimidating and scary, especially for someone who has Alzheimer’s or another form of dementia.
- Be totally mindful, that is, don’t think about the past or the future — concentrate on the here and now. Mindfulness is “paying attention on purpose, in the present moment, fully and without judgment,” with no interruptions by outside distractions such as smart phones, blaring TVs and young children. And absolutely no multi-tasking. Be totally present for your parent, not just physically, but mentally and emotionally as well.
- What is your primary goal? Is it to get your parent to do something? Or to stop doing something?
If you use the direct approach to accomplish your goal, it could backfire and damage your relationship. The problem is that it requires submission, and human beings hate to submit. People will almost invariably resist what seem like attempts to control them. When they do submit, they do it resentfully. That resentment, accumulated over time, destroys relationships and makes useful communication almost impossible.
Instead, an indirect approach is usually more successful. Share how your parent’s actions — or lack of actions — impacts you. “I’m worried …”. And, don’t expect results from your first attempt. You may have to approach the matter several times, each time using a slightly different approach, before you achieve your goal.
Even though it deals with the problems of getting someone with Alzheimer’s to bathe, one of the best articles I’ve read about this topic is “Alzheimer’s, Bathing, and Dotty,” written by Bob DeMarco, founder and editor of Alzheimer’s Reading Room, one of the very best sources of practical information for caregivers of people who have Alzheimer’s or another form of dementia.
- Be an active listener. That is:
1. Actively listen to your parent. Focus your attention on and maintain good eye contact with your parent to convey engagement with the intent of understanding and conveying empathy.
2. Using your own words, summarize what your parent said and repeat it back to them to be sure that you understood them correctly. If you did, respond to their statement.
3. If you didn’t understand your parent, ask them to repeat their statement, then summarize and validate it to be sure of your understanding.
- If your parent says something that pushes your buttons, take several deep breaths before responding. Clear your mind and relax. It may be difficult, but it will help sustain your conversation.
- Ask for what you want, not for what you don’t want. For example: “Would you go shopping for new clothes with me?” instead of “Don’t wear old clothes with stains or holes.” Or, “Let’s go here” instead of “Don’t go there.” This allows your parent to save face — to maintain their dignity and to avoid humiliation or embarrassment.
- Ask instead of order.
- Ask instead of assume.
- Offer choices whenever possible.
When Alzheimer’s or another dementia IS a factor
In addition to the above tips, the following are also important when communicating with someone who has Alzheimer’s or another form of dementia, especially when they are in the later stages of their illness.
- Most of us believe there is only one, easily perceived reality as it factually exists. We also beieve that everyone else perceives the world in exactly the same way we do. But, they don’t.
Each of our minds constructs its own version of reality. Even the most basic processes of perception are “constructed.” More importantly, what the perceived “facts” mean is a function of our personal learning history and life experiences, as well as the narrative that each of us has regarding who we are, who others are, and how the world works.
That said, most of our perceptions of the “real” world are similar enough to those of other people that we co-exist relatively peacefully.
Perhaps the most difficult thing to understand for those of us who don’t have Alzheimer’s or another form of dementia is that people who do have these conditions live in a very different world than we do. Their illnesses have disrupted their brain circuits to the point that they must cope with a world that doesn’t make sense anymore. Sometimes this shows up as confusion; other times it shows up as anger or combativeness.
Bottom Line: Don’t argue with or try to correct your parent. You will not win. You can’t convince someone with Alzheimer’s or another form of dementia that they are wrong. And, you will not be able to convince them that your reality is the true reality. Indeed, trying to correct them only adds to their confusion.
This isn’t easy to do, but it’s necessary — you must accept the fact that when a person who has Alzheimer’s or another form of dementia says something they believe to be true, it is in fact a reality for them. It is their reality.
I learned this during the first year I helped care for my mother. We would often go out to lunch to one of her favorite restaurants. During our drives to and from the restaurants, she almost always made the same comments: “It’s about time that they put up a stoplight here.” (The stoplight had been there for at least the past 18 years.) Or, “That’s a new building. I wonder when they put that up.” (Again, the buildings she referred to had been there for at least the past 18 years.)
At first, we got into “mini-arguments.” I finally learned that trying to correct her was useless. I simply agreed with her — who was right was completely irrelevant — and then changed the subject. (This is called “validation”. More about that next.)
- Validation. Accept whatever behavior the person has and try to become a part of it. Validate their feelings by saying something like, “I see that you are angry (sad, upset, etc. …).” It lets them know that they are not alone and then redirect them into another thought. For example: “It sounds like you miss your mother (husband, father, etc. …). You love them very much, don’t you? Tell me about the time …” Then ask for one of their favorite stories about that person).
- Tell them what you are going to do before you do it. Particularly if you are going to touch them. They need to know what is coming first so that they don’t think that you are grabbing them.
- Speak slowly at one-half your normal speed when talking to your parent. Take a breath between each sentence. They cannot process words as fast as non-diseased people can. Give them a chance to catch up to your words.
- Use short direct sentences with only one idea to a sentence. Usually, they can only remember only one brief idea at a time.
- Ask only one question at a time. Let them answer it before you ask another question. You can ask who, what, where and when, but NOT why. Why is too complicated. They will try to answer, fail and get frustrated.
- Don’t say “remember.” Many times they will not be able to do so, and you are just pointing out to them their shortcomings. That’s insulting, and can cause anger and/or embarrassment.
Be careful of the words you use.
Oftentimes, the words we use influence the feelings of the person with whom we are communicating. We’ve compiled a list of word pairs to help you. The first column contains words and phrases to avoid because they are disrespectful or could cause negative feelings. The second column includes the positive / respectful / neutral pair-mate to use instead of the word or phrase in the left column.
|To Avoid –|
Disrespectful / Negative
|To Use –
Respectful / Positive
|suffer from||has, have|
|victim of||has, have|
|afflicted with, stricken with||has, have|
|care for||help, assist, support|
|caregiving||helping, assisting, supporting|
|deal with, put up with||work with, help, assist|
|crippled, quadriplegic||physical disability / limitations|
|slow, mentally ill||cognitive disability / limitations|
|disabled person||person with / who has a disability|
|the disabled||people who have disabilities|
|elderly person||person who is elderly|
|the elderly||people who are elderly|
|individual, individuals||person, people|
|invalid||person with / who has a disability|
|wheelchair-bound||person who uses a wheelchair|
|confined to a wheelchair||person who uses a wheelchair|
|deaf||hearing disability, hard of hearing|
|dumb, mute||speech impediment|
|poor, unfortunate||person, people|
|patient(s) (unless they are receiving treatment in a medical facility)||person, people|
|honey, sweetie, dearie||person’s name (first name if appropriate)|
|normal, healthy, able-bodied||people without disabilities|
A Final Thought
Caregiving is some of the most difficult and demanding work that we will ever do. How you live with dementia depends completely on your own attitude. We cannot change the condition itself, but we can change how we approach this enormous challenge in our lives.
We are still in a relationship, even a partnership with the person we love who has dementia. However, we are the only partner in this relationship who can decide how to think, how to behave, what to believe, how to cope.
The person living with dementia, obviously, is being propelled on a journey over which they have very little or no control. We still have control (even though it may often feel that we don’t).
We can still make attitude adjustments, course corrections, seek help and ask for respite for a few hours or a few days. The person living with dementia has none of these choices available to them.