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Living the Praxis for Care 

Hearing with Caregiver's Ears: Understanding Your Loved One's Behaviors




This week I’ll talk about how to hear with care-giver’s ears to build understanding for making decisions and taking actions that are satisfying to both of you.


In my last post, I talked about how medical problems associated with Rexulti bug me. There’s another thing that bugs: the language that states the person living with Alzheimer’s dementia changed. My issue is whether the person changed or did the context in which the person is living changed.


Every time I hear that commercial, I wonder what happened that triggered the yelling or agitation or repetitive questioning?


I’m going to start this discussion with a discussion of what Alzheimer’s Dementia is. Alzheimer’s Dementia is a degenerative brain disorder that diminishes the brain’s ability to process an experience to retrieve the best solution for it then store the information for future experiences. I know that’s a big sentence with a lot of words. But here’s what I mean.


Our brain is like a warehouse filled with files and file cabinets that contain all the information we’ve learned throughout our lives. In the course of a minute, the brain processes thousands of pieces of information and stores it for use when needed. For those of us with unaffected brains, we can easily retrieve the information we need to manage what we’re experiencing. For persons with dementia illnesses, particularly Alzheimer’s dementia their brain loses the ability to do that.


People with Alzheimer’s dementia, particularly in the early stages are keenly aware that something is going wrong with their brain. It's that awareness that can lead to behaviors that seem out of character like agitation, frustration or withdrawal.


Let’s think about what agitation is. Agitation is a response to an uncomfortable experience. It is something that we all have experience and will experience at some point. Who hasn’t gotten agitated when we can’t figure out how to do something we know how to do or we aren’t getting an appropriate answer to a question? For those of us who have unaffected brains, we can step away from the situation to settle down or think about something else that will help us find the information we’re seeking.


But for persons with Alzheimer’s dementia, not only won’t their brain let them have the information they want, the disease impedes one’s ability to retrieve the appropriate steps for managing the frustration that comes from being unable to get the info they want. In that context, your loved one loses the ability to manage responses to what she or he is experiencing.


It’s important for care-givers to understand that Alzheimer’s dementia doesn’t eliminate any of our human moods or preferences or idiosyncrasies. It only impedes the person’s ability to manage them.


Using what you know about your loved one creates the foundation for building the understanding you need to make decisions and take actions that are satisfying to both of you. No one knows your loved one better than you do. A lifetime of experiences with your loved one has taught you her or his moods, preferences, and idiosyncrasies. For care-givers to a person living with dementia, it is important to consider what that person is experiencing that are the triggers for agitation or other odd behaviors.


Here's a story from our care journey: My mom was a late-night nibbler. She’d often get up and grab something to eat before going back to bed.


When Alzheimer’s dementia arrived, she continued her late-night foraging. The problem was she couldn’t retrieve the information necessary for completing the task.


I’d wake up to find the counter covered in flour or grits. Sometimes there would be eggs on the floor or several open but uneaten cartons of yogurt in the refrigerator. It was extremely frustrating to have to clean the kitchen before getting dressed for work and preparing her breakfast.


It took me a while to understand what she was doing. Although she recognized that she was hungry and flour and grits would quell her hunger, she could no longer retrieve the information that she had to cook those food items to make them edible. Understanding how she was experiencing late night hunger helped me make decisions and take actions that were satisfying to both of us. T


o prevent waking up to a big mess in the kitchen because she was foraging for food in the middle of the night, I learned to make sure she was full before going to bed.


Understanding a loved one’s behaviors in the presence of a dementia illness requires observation of her or his actions. It’s a lot of work but using what you know about your loved one is invaluable for creating understanding within the context of dementia. Below are some questions to help guide your observations.


Observation questions


  1. What annoyed my loved one before dementia? How did she or he handle annoyances?

  2. What did I notice about my loved one’s behavior in the minutes before an outburst? How long did it last? How often do outbursts occur? What time of day is my loved one more likely to have an outburst?

  3. What conditions were in the room before an outburst i.e. temperature, lighting, sounds. What are my loved one’s tolerance levels and preferences for various conditions? How were the conditions consistent with my loved one’s preferences?

  4. What is my loved one trying to tell me when she’s having an outburst? What is the problem she’s having that she needs me to help her solve?


Action steps for observing your loved one


Keeping a log of behaviors, wanted and unwanted, gives you the understanding you will need to make decisions and take actions that are satisfying to both of you. It’s important to identify what’s going on with your loved one so that you can create conditions that offset frustrating behaviors.


  1. Write down the difficult incident from start to finish. Take 3-5 minutes to jot down what happened including time of day, length of incident, and what happen in the minutes before the incident. You can go back at a later time to write more details.

  2. Write down how often difficult incidents happened noting whether they occur daily or intermittently.

  3. Note what worked and what didn’t work to address the incident.


Relationships have complex interpersonal dynamics that can get complicated in the presence of a dementia illness. Becoming a family care-giver changes the relationship from one between two independent persons to a relationship where a once independent person is dependent on someone else. That’s a very difficult dynamic for both the care recipient and the care-giver. It’s very easy for care-givers to get so focused on a loved one’s needs that they overlook their needs.


Making decisions and taking actions that meet the needs of a care recipient is a mature and prudent approach to caring for a loved one. However, it doesn’t create space for the care-giver to embrace what is needed to continue caring.


The genesis for my motto: care-giving is what you do for your loved one; giving-care is what you do for both of you was the realization that I couldn’t be my best for mom if I wasn’t at my best for me. I didn’t realize that as I was building understanding of her needs, I was setting the foundation for understanding my needs.


I’ve learned on this journey that this care relationship won’t work if I don’t understand and include what I need. Including myself was a lesson it took me a long time to learn. But when I began including myself, the decisions I made and actions I took were satisfying to both of us. Here are a few tips for including yourself.


Action steps for including yourself


  1. Discuss how difficult incidents impacted you. What did you feel during the incident? What outlets do you have for managing your feelings?

  2. Define what you need from the relationship as you continue caring for your loved one. This is a very difficult step but it is essential for ensuring that you are an integral member of the care relationship.

  3. Identify the support you need in order to continue caring for your loved one.


Understanding of who your loved one is in the presence of Alzheimer’s dementia can create a satisfying care journey for both persons. Though building understanding will take time and it won’t be easy, I encourage you to keep trying. It will be worth the effort.


Thank you for taking time to read this post.


Be well until next time.


Dr. Sheri



 

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Dr. Sheri L. Yarbrough is an author, caregiver, and founder of Praxis Senior Care-Giving Solutions, a consulting business that provides care-givers with practical and easily implemented strategies that can be tailored to meet their individual care needs.


View Dr. Yarbrough's weekly blog on all things caregiving from a caregiver's perspective.


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