We have a resident that is well over 100 years of age. Although she has dementia, she also has lucid moments. Recently, I stopped in to visit with her and had a conversation we’d never had before.
Dementia patients often see much more than we think
Me: “How are you?”
Her: “I’m sad.”
Me: “Why are you sad?”
Her: “Someone was talking about me.”
Me: “What did they say?”
Her: “I don’t know but I didn’t like it.”
This was a reminder that even when we think an individual with dementia or Alzheimer’s does not know what we are saying, there are times when they do understand.
Even if they do not understand the words they may understand in a number of other ways.
This can include:
Dementia Patients know how you make them feel
Tone of voice
Touch
Look on our face
Attitude toward that individual
Perception
What ways have you noticed an Alzheimer’s individual is perceptive to their situation?
Today, I am thrilled to welcome Kathleen Brown to Caregiving Monday. She is going to share lessons she has learned from being an Alzheimer’s Caregiver. This seemed very apropos today, because Wednesday is World Alzheimer’s Day. Welcome, Kathleen!
3 Everyday Lessons for an Alzheimer’s Caregiver by Kathleen Brown
Sapphires were once associated with clear thinking
I discovered Mom had Alzheimer’s during a September trip. September. Its flower is the forget-me-not; its gemstone, the sapphire. Sapphires were
once associated with clear thinking. As I began caring for Mom, in the house where I grew up, I hoped the clear thinking part was for me.
If you’re an at-home caregiver, you know it presents unique challenges. My first weeks with Mom felt like one emergency after another; I was on adrenaline overload. Then I began noticing the miracles: tiny ones (finding one of Mom’s shoes in the trash can), and huge ones (Mom suddenly agreeing to a long-needed bath). Feeling the Lord’s presence and help, I calmed down and began to learn. Fear not—you’ll see miracles, too.
Finding the best way, however, means we must look at all the options.
Three of the Biggest Everyday Lessons
#1-You always have options.
In the beginning I thought there was only one right way to accomplish any care task. Wrong. There will always be more than one way to do what you need to do. Finding the best way, however, means we must look at all the options.
Example: Doctor to Mom: “Exercise.”
Mom to doc: “No.”
Solution: Two carts at the mega-store. While Dad shopped with one, Mom used the other like a walker, happy to stroll with me all around the store.
Laughing in the face of Alzheimer’s is absolutely necessary for survival
#2-Be ready to laugh.
Laughing in the face of Alzheimer’s is absolutely necessary for survival. The day Mom opened her mouth and I saw her dentures were in upside down, I smiled when I wanted to cry. After I fixed them, I laughed. Her poor gums were no longer being bitten by false teeth! Humor is an invaluable companion in caregiving.
When you need strength, you’ll have it.
#3-You will make it, even through the most difficult times.
When you need strength, you’ll have it. When you need words, they’ll come to you. When there’s nothing you can do to help your loved one, she will, against all odds, help herself. I can’t tell you how it happens—who can explain a miracle?—but I can tell you that resolution
always comes. Expect it.
Expecting solutions widens your field of vision. You’ll find resources and strategies you won’t see if your eyes are closed in despair.
We hope effective treatments for Alzheimer’s will come—someday. Ways to cure and even prevent it. Until then, our peace will be in knowing we can help our loved ones through it. We can.
While working with dementia and Alzheimer’s patients over the years, I’ve noticed most of them don’t like to be alone. This could be because of the confusion the disease creates.
Those with Alzheimer’s are more perceptive than we give them credit
Sometimes the disease demands they are not alone because of their actions, also.
However, some of the reasons I’ve noticed this are:
Need reassurance not alone
Need reassurance someone cares about them and loves them
Need guidance to know what’s next
Need comforting when they are confused
What reasons have you noticed in Alzheimer’s patients that don’t like to be alone?
Recently, I’ve learned of several families that placed a loved one in hospice.
This is never an easy decision. There’s no easy way to prepare for this.
However, I’ve worked with hospice on numerous occasion.
Some of the benefits of hospice are:
Helps in decision making
Offers support groups
Offers spiritual support
Certified and knowledgeable workers in the end of life stages
Provides knowledgeable feedback
Oversees the final preparations {such as contacting mortuary, having death certificate issued, etc.}
Provides services to you at home, in a hospital, at a nursing facility or at their own facility
Continues to care for your loved one through a decline—while usually this is for six months or less, at times their services extend beyond this time period. If the loved one improves they can be discharged and later readmitted when a decline reoccurs.
Give the patient and their family a sense of dignity
Respects the patient’s wishes
Bonus: Lessens financial burden of being in the hospital
I’ve worked with many families that have a loved one with Alzheimer’s and dementia.
Often I see a struggle to accept the diagnosis.
Accepting a loved one has Alzheimer’s is not always easy. Sometimes we have a mental block.
This happens in a variety of ways:
Mental block
Inability to accept changes
Lack of knowledge about the disease
Belief loved one will be healed
Denial
Often you hear the saying that when you have a loved one with dementia you “mourn the loss of them now, to mourn the loss of them all over again when they’re gone.”
That is so true. The person we know and love is no more as dementia changes the person.
Acceptance of the disease is a private journey that everyone has to reach in their own way and time.
However, a few tips to help are:
Cheirsh the time you have together
Educated self on the disease
Celebrate the time you have with your loved one
Listen to the professionals and be open to what they are saying
Understand you can slow the disease but not stop it
Pray and ask God’s help and guidance on this journey
How have you dealt with the Alzheimer’s diagnosis of a loved one?
I often notice while working with the elderly, especially Alzheimer’s and dementia patients, that some stories are repeated over and over. There have been times I’ve heard the stories so much that I feel that I can tell the story.
Those stories are important to the teller and we can learn lessons from the experience
However, I also learn more about the person while listening to the story. Sometimes through the retelling I can glean nuggets of insight about the person’s life.
However, I recently had a conversation with another worker that got me to thinking. She said “when they repeat the story over and over it is really important to them.”
I realized that she had a valid point. That incident was important to that person or made an impact on their life and/or thought process.
I realized this can also prove true when actions are repeated over and over again. After all actions speak louder than words.
What story or action is important to your loved one?
Caregiving can be a very lonely task. After all you spend hours or days with the person being cared for.
During this time family, friends and co-workers may not understand all of the strain and frustration you feel.
These groups are important because they provide an outlet of discussion with other likeminded individuals. These individuals are experiencing the same concerns and struggles and need to vent or talk through their problems.
However, there are groups where you can find support.
Working with Alzheimer and dementia patients, I often witness family and/or staff talking about a person right in front of them.
Things will be said that are demeaning or degrading to the person.
Those with Alzheimer’s are more perceptive than we give them credit
Often the attitude is that because the person has Alzheimer’s or dementia, then s/he does not understand what is being said about them.
I’ve discovered through observing my residents that this is not often the case.
Yes, there are times when they may not understand. However, more often than not they understand more than they can express. They understand exactly what is being said about them. This can also show the person how those speaking really care about them.
So as with all things be careful what you say. If the individual did not have Alzheimer’s, would you be saying these things directly to them?
I’ve discovered that with personality traits and characteristics from childhood and adulthood are often intensified and emphasized in dementia and Alzheimer’s patients.
These can include a variety of personality characteristics. Some that I’ve seen are:
Wanting attention
OCD tendencies
Meekness
Neatness
Sweetness
Irritations
Food likes and dislikes
In what ways have you seen the personality emphasized due to dementia?
Many people with Alzheimer’s and Dementia have a difficult time expressing themselves.
Often they cannot find the work or get the word to roll off of their tongue, although they long to.
Sign Language is one way to help people express themselves
Some ways in which to combat this are:
Teach sign language for simple words {drink, eat, bathroom, etc.}
Have picture cards for the person to point to {food, bed, family, shower, etc.}
Watch non-verbal cues such as facial expressions, posture, gestures, clenched hands, etc.
Understand a native language {ex. I had a man that was a missionary to Africa. He would divert to that language at times. Understanding words for that language helped to understand his needs.}
Use music to soothe. Often music helps a person with the disease to find words they are having trouble finding. Also, playing an instrument can provide a way for self-expression.
Ask to draw or paint a picture {if capable—mid to late stages may not have the capability}
Point to what they would like.
Bonus: We’ve discovered that sometimes playing charades also helps in expressing oneself.
How do you help your loved one express themselves when they struggle?
