Are you finding yourself holding your breath in anticipation of what your loved one is going to do next?
For a caregiver to persons living with Alzheimer’s disease or related dementia, this is an all to common reaction.
How do I know this? Because I used to do just that sometimes while I was a full-time caregiver to my grandmother, who had Alzheimer’s. I had to learn how to “Please BREATHE.” I’ll explain further in a little, but first, a glimpse into my early caregiving experiences.
Even though my Granga was hard of hearing, she had an amazing ability to hear and know when I was up and at ’em.
“I am up!” would ring through the house subsequently getting louder and louder with each second that I wasn’t immediately there to respond to her. When I did help get her up and started for the morning, she rarely went a moment without wanting to know what I was doing. She was my shadow.
I started reacting to this by “tip-toeing” through the house. Yes, not in the metaphorical sense, but in the real sense. I actually tip-toed out of my bedroom in the mornings. Not my prouder moments! At the time, I had been up with either my Granga due to sundowning behaviors, or up with my 2 year old toddler daughter.
As much as I LOVED my Granga, I was simply overwhelmed by my grandmother’s new personality and behaviors, and my new role as a caregiver.
So, how did I keep my sanity during these behaviors? By understanding the nature of Alzheimer’s disease and how “behaviors” were actually a form of communication. It was my Granga’s way of sharing how she was coping with her disease. I needed to adjust how I was coping in my new world!
If the person with dementia cannot formulate the words or thoughts to tell the other person how they feel, that they feel scared, sad or angry , etc., the individual usually reacts with what we view as “negative behaviors”, such as shouting, pacing, cursing, hitting, to name just a few.
Learning to know what triggers these behaviors was key. In time, I learned to put the “causes” into a mnemonic. After all, caregivers are busy enough, the last thing we need is one more lengthy list.
I have learned that most behaviors can be found when we stop, and
Please: The P is for PAIN
Pain should be the first source of a behavior to rule out. Pain is the more frequent cause of many behaviors. Even if the individual with Alzheimer’s is not able to verbally acknowledge pain or discomfort, pay attention to their non-verbal facial and extremity cues. Using a visual pain level scale can be helpful too to help identify the level and location of the pain.
Do you have a daily structure? Does your loved one have a favorite activity or meaningful task they can still engage in? Is exercise a part of their day? Are you spending quality time interacting, and not just being in the same room with them? If no, then they are probably bored and expressing a desire to be engaged and purposeful.
When is the last time he/she has gone to the toilet? Could he be discomforted? Constipated? Full bladder? Incontinent? This can be so upsetting to the person with Alzheimer’s. Establishing a routine of specific times to go to the bathroom throughout the day will help reduce this source of behavior manifestations.
Does your loved one need a break? Do you? (That’s a joke :)) While keeping your loved one occupied throughout the day is important, equally important is offering times of rest, wind down, or naps. Avoiding stimulants such as caffeine, candy, television, loud noise or high energy activities prior to rest or sleep are necessary.
The person with dementia is biologically experiencing a profound loss of their ability to negotiate new information and stimulus. They are experiencing so much loss in their life. How would you feel? Scared, anxious, fearful, needing support and reassurance? Be empathetic to the loss in their life, validate, than offer ways to prevent or reduce the agitation caused by anxiety by creating a calm environment, removing stimuli, simplifying their world, to name a few tips.
Persons with dementia should drink six to eight glasses of fluids each day – more if they have hard stools, just like the rest of us. If the individual refuses, or makes taking a drink, difficult, try using visual cues to orient her to what you want out of her. She may have simply forgotten what to do next. If avoiding hydration is a behavior rooted in anxiety or paranoia, try simplifying the task, and not asking “Do you want a drink?” Simply say, “It’s time to drink.”
It seems that dementia patients always have eating issues, whether it’s eating too much or too little. There usually isn’t a happy medium. You must remember that appetite is controlled by the brain. Try leaving many healthy snacks around the house, so they can eat on the go. When setting the table, avoid plates that do not provide contrast. A person with Alzheimer’s usually has visual/spatial problems which might translate into not being able to see the food on the plate, especially if the plate is white. Try using alternate, bold colors to distinguish the plate and cups from the table cloth or table. Additionally, check your loved one’s mouth for sores and thrush, which can often go unnoticed or not vocalized as being painful or discomforting.
The environment is so often overlooked, and yet it plays a large role in behaviors. Is the area too hot, too cold, is it loud or too quiet, too much activity or not enough visitors, is the room cluttered or busy? Persons living with dementia often have extraordinarily fine tuned senses. The things we don’t pick up on, like the heat or A/C unit turning on can be extremely discomforting to them. Pay attention to the surroundings. Again, using picture cues to help identify possible environmental triggers can be a tremendous tool.
After you have identified and treated the source of the behavior, redirecting or changing the focus into a more calming and pleasing activity or conversation will be the next step. You, as the caregiver, should be able to identify what best calms your loved one.
You may have noticed that I stress many times the use of visual prompting and cuing.
Visual aids, or augmentative and alternative communication aids, are relevant and helpful at addressing behaviors that result from an inability to find and express the right words or thoughts. Understanding this principle, applying it to the experiences I had as a caregiver, and adding in a lot of passion to support and care for the Alzheimer’s community led to creating a series of visual cue cards, called Caregiver Cards. The Caregiver Cards product is a series of 155 cue cards that caregivers use to help communicate, orient, cue or reduce anxiety and related behaviors in persons living with Alzheimer’s, related dementia, or other memory or speech disorders. Caregiver Cards address emotions and behaviors, activities of daily living, instrumental activities of daily living, commands, prompts, people, places and events.
I am proud of how Caregiver Cards has been helping many caregivers and their loved one’s already. One fond memory I have of the success of using Caregiver Cards as effective visual communication came from a fun outing with a memory care community that I volunteer at.
I was sitting next to the sweetest gentleman, who happened to be non-verbal.
He was not engaging in the activity and a little withdrawn. It came time for snacks and drinks. I gave him his water bottle, and he promptly held his water bottle. That’s it. Firm grasp, but no drinking. Next, I showed him how I took a drink, and said, “Drink water.”. He just grinned at me (probably thinking…”Nice, that girl is drinking some water. Good for her.”). Then I took out my Caregiver Cards and flipped to the illustration “Thirsty,” got his attention to the image, and said, “You are thirsty. Drink, please.” He immediately put the water to his mouth and drank. He followed it with the biggest smile and a beautiful look of acknowledgement, as if to say “thanks.” It was me that was thankful! I’ll cherish that connection we shared for a long time.
Now go ahead, give yourself a moment to “Please BREATHE.”
If Caregiver Cards seems like a good tool for your caregiving needs, please visit and order at www.caregivercards.biz.