Communication can make or break any business deal or relationship. No matter how well you articulate or think your spoken expressions make sense to others because it makes sense to you, it is still up to the other person to interpret what they heard. Some people with Dementia eventually relive past experiences as though they are occurring in the present moment. Your words spoken, implied, or demonstrated through body language can make an incredible difference to how well they react to any situation.
If your loved one is living with Dementia, they may only interpret roughly every third word. As mom continues to decline in stage 6, communication is even more critical now than before. Now I feel the weight of my words because they might be the last thing she ever hears from me. Telling Mom that I love and appreciate her while thanking her for all she has done for me is on repeat at the end of each visit. I want to make sure she hears my words and see some sort of acknowledgment that she understands what I am telling her—no sarcasm needed as we shared in previous years.
Now at the beginning of the visits is a different story. I hear the staff complaints of what Mom refuses but no understanding why she might be refusing food, showers, meds, or even a haircut. I hear their tone, but their frustration sounds different than mine. My frustrations stem from knowing there is a remedy for Mom's ailments, but she refuses due to depression or defeat, no matter how simple the treatment. The staff caregivers know I understand her better as the daughter, but their frustrations come from not doing their job quickly or thoroughly. I had the years to be up close and personal with Mom to learn the tips and tricks that work for her. The staff is starting from scratch and dealing with a person further down in the journey of living with Dementia, which is not easy. Mom, however, knows how to act and push every button to push people away from her on purpose. Even with her temperamental behavior, she communicates something to whoever can break the code.
Today's guest, author of Essential Strategies for the Dementia Caregiver, Learning to Pace Yourself, Tami Anastasia, is a Dementia consultant, educator, and speaker. She has provided counseling services, dementia guidance, emotional support, and care strategies to family and professional Dementia caregivers. I asked Tami to help shed some light on improving communication, as she shares in her book. It is hard enough to understand our loved ones as they decline through the stages of Dementia, but even harder for caregivers in memory care communities to understand them with limited interaction.
Dementia family caregivers know more about the decline of our loved ones than any community will ever be given the time to get to know our loved ones. They are taking over where we have either willingly stepped aside or emotionally thrown our hands up in defeat. You might even have become fed up with those sticky situations when your loved one says one thing yet means something entirely different. Our loved ones will continue to decline, and so will their ability to communicate their needs or feelings. Learning to improve communication earlier in the journey is vital to your progress as a caregiver.
The family caregiver is forced to figure out a routine that helps us understand the ebbs and flows of change in our loved ones' status, so every bit of feedback we can get from our loved ones must be communicated as clearly as possible. The staff in many memory care communities are not fully trained in caring for those living with Dementia because training can be costly. Most doctors are not fully trained in Dementia-related mental health either. My frustrations grow because as I struggle to understand Mom's needs, I need to figure out how to bridge the gaps with staff. As the stages progress, the gaps widen because staff turnover also creates a break in communication. I have learned to make the best of a crumbling foundation in an industry designed to be a protective environment for our loved ones but fails in the most straightforward approach through communication.
The problem with poor communication is our loved ones might be punished for aggressive behaviors when verbal communication, including body language, is misunderstood. The industry response is often with medications to calm them down or remove them from their favorite space or activity. In reality, aggressiveness may result from constipation, pain, or exhaustion communicated poorly. I am seeing this more as Mom declines into stage 6 of Dementia. When words are not shared clearly, we have to become code breakers. Some of these issues are far more than the average professional caregiver is prepared to handle. Body language may be challenging to decipher, but diligent observation with a dash of compassion can break most codes.
"What is it? Where does it hurt? What does it feel like? When did it start hurting? How much does it hurt?"
A battery of questions is presented to Mom with the same response "I don't know, it just hurts." And yet, the level of aggression is a clear indicator that something is different because it is more than just having a bad day. This conversation gets frustrating for me when I am the fixer, problem solver that cannot fix the progression of Dementia. At the very least, I want to improve Mom's quality of life, but it takes cooperation from the staff to listen, observe, learn, and respond with me.
We need to learn how to approach differently to change the presentation for better responses, just as we do with our children. This time, saying "because I said so" will not work. I ask Mom each visit, "How are you doing?" She responds with the simple, direct, "I'm fine." The short answer that she hopes will stop any further prodding. I know better at this point, so I continue asking, "So how are you feeling?" Again, the short answer I hear is, "Okay, I guess." If she is guessing, that tells me there is far more to discover, but I have not asked the right question yet.
The frustration begins because her responses indicate this will be another code-breaking visit. If she is doing fine or okay, she guesses, then why did she hit a staff member? If she is in pain, why is she refusing to take her medication? And what rabbit hole will I venture down today to figure out the "I guess" part. Is she unwilling to share the truth or possibly struggling with finding the words to explain more clearly? For me, the daughter, I feel it is both issues. The staff has a scheduled routine to follow, so knowing whether or not she is telling the truth is not their immediate concern. Either way, as the visit continues, I become more frustrated when I feel like I am training the staff once again. If I cannot fix Mom's quality of life, perhaps I can improve the broken communication.
Tami Anastasia is familiar with this problem and breaks it down in her book to assist the family and professional caregiver because poor communication is a systemic problem beyond the environment. If you or your loved one's professional caregivers are struggling to communicate with your loved one, then consider the following points:
1. Too many questions - I thought I was helping, but I was asking too many questions. This prodding can overwhelm our loved ones to cause a frustrated or aggressive response. Staff members may not realize they caused the frustration and seek to calm them down with medication or use isolation rather than trying a different approach.
2. Your loved one may not feel heard. Arguing or correcting our loved ones does not help matters and only makes them angry. You cannot win an argument with insanity.
3. People with Dementia are very sensitive to body language, facial expression, and tone of voice. They may be reflecting what they perceive from your communication. We have to be mindful not to convey impatience, frustration, annoyance, or anger.
4. Your loved one may misunderstand your intentions or not understand what you are saying.
Listen to understand (observe), so you can pause to communicate clearly or at the level that matches their mental age. No matter how clearly you think you are speaking, keep in mind that their brain is deteriorating, so sometimes repeating yourself may not work. Sometimes the bests form of communication is silence with gestures or body language they can mimic.
5. Be careful how you approach your loved one because once they begin to lose eyesight, peripheral or a monocle, you might startle or scare your loved one. Any attempt at verbal communication may be blocked with a fight or flight response.
6. Provide reassurance. More importantly, our loved ones may be reliving an experience and reacting as if it is happening now. Only they may have been punished for expressing their concerns or feelings in the past.
7. Choose your battles and decide what result is more important for the moment or task at hand. It may not matter how you say something because it may not need to be said at all.
Tami breakdowns her 4 D's to Detach, Diffuse, Distract, and Document in her book as part of your journal so you can learn more about your loved ones as they change. Knowledge is power, and our loved ones need us to be empowered.
Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.
Intro: Vacation Time by Khris Paradise
Outro: Misty by Khris Paradise