There are times when I get tired of being a caregiver, but I remind myself to cherish the moments. The day will arrive when I will no longer have my loved one.
Cheirsh the time you have together
So what are some ways to cherish the moments:
Listen to what they have to say
Discuss their lives—this is difficult as they have less to say; but often we listen to descriptions of the book my grandmother is reading
Listen to memories and family stories
Put away devices—my grandmother doesn’t understand the computer and iPhone. While we can’t put them away completely; we do try to designate time without them each day/visit
Enjoy the time together—for us this often involves just taking a ride or sitting quietly
Celebrate Christmas—I have a friend whose has a parent that was only given a few months to live. Knowing the parent would not make it to Christmas, they celebrated early. {This could also work for other special events or holidays}
“I go to work to get away.” A lady in the support group I lead admitted rather sheepishly.
Take time to Pause, Praise and Pray
Caring for a loved one is very tiring and trying. A loved one with Alzheimer’s, that needs constant supervision, is even more of a trial.
Caregiving cannot be a lone support. Don’t be afraid to admit you need help and to ask for it.
We all need a break. Whether it’s to work, to go shopping, to do something special for ourselves or be pampered. Don’t be afraid to get away.
No one can go 24/7 without becoming exhausted, depressed and eventually physically ill.
I enjoy reading the blog Living in the Shadows of Alzheimer’s. While documenting her life with her husband that has Alzheimer’s, Sherri often reminds herself {and her readers} to take time to Pause, Praise and Pray.
CNAs are there to assist the nurses and help with activities of daily living
Take the time to thank a CNA {Certified Nursing Assistant}. While everyone’s job is important and the facility should work as a team, the CNA’s take on the bulk of the work for a fraction of the cost.
I often hear frustrations over how long it takes to answer a call light or about a need. In my position, I can listen but I do not have the skills to assist with activities of daily living {such as dressing, toileting, etc}.
While there are some CNAs that may not pull their weight, the majority of CNAs work hard. They often have ten or more residents to care for at a time.
So the next time you visit your loved one I encourage you to take a moment to thank a CNA.
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.
In the process of moving my grandmother, we came across a couple who at first appeared to be very helpful and considerate. However, the more time spent together the more we discovered how much they were attempting to take advantage of the situation. Even when boundaries were set in place they attempted to cross over these boundaries.
Beware of those out to take advantage of the elderly
They were very good at what they had done and we heard enough tales from others to discover this couple had their act down to a science.
Thankfully we were there to protect and watch out for my grandmother. However, dealing with these individuals was a great headache and very stressful.
Sadly, this couple is not alone and there are numerous individuals out there willing and ready to take advantage of the elderly in a variety of ways.
So how can we prevent this?
Be aware of who the elderly are talking with
Block soliciting calls
Assist with their bills to make sure they are not sending money to scammers
Be the front person for any transactions
Instruct your elderly parent not to allow strangers in the house
How have you protected your loved ones from being taken advantage of?
Caregiving can be very trying at times and we all need someone to listen.
We all need a listening ear
We all need someone with whom we can share both our frustrations and the funny moments.
Now that my grandmother is living with Mama, we discover the need to share and vent has become even more important.
At least once a week, I’ll receive a text or call from Mama to share her conversations.
Two of these sound something like the following:
“It’s 6:30 and she’s pulled the shade down. Never mind that it’s still light outside.”
“Mama had a frosty for lunch. I said, “I guess you don’t want any ice cream since you had a frosty” tonight. She said “I can eat a little. The frosty was for lunch.”
Sometimes it’s the small things we need to share. That’s okay.
Recently we moved my grandmother in with Mama. This is a learning process for everyone involved.
The time has come for a transition in the life of our elderly loved one
Finding time alone is even more difficult. Even if Mama goes back to her bedroom, my grandmother will come to check on her if she’s back there for more than a few moments.
Trying to explain that she needs time to herself goes unheeded. So what do you do when a parent moves in?
However, there are ways in which we can receive help.
When I’m in town I’ll take my grandmother off on errands or to ride through the countryside for a while
Mama and I will run errands together, which gives us time to talk and share
I’ll stay with my grandmother, so Mama can run errands
We ask friends {from time to time} for help
We hired someone to take her to church and doctor appointments {this also helps Mama so she does not have to take more time off work}
How have you dealt with a parent moving in with you?
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?
I often see on message boards questions about loved ones that are in the end stages of life.
Often this includes loved ones:
Those dying see a world beyond what the rest of us can see
Seeing people that others can’t see
Talking to people others can’t see in the room
Reaching up or out towards others
Making comments such as “He’s so beautiful” or “heaven is beautiful”
Mentioning loved ones long deceased
Even claiming to have a glimpse of heaven and sharing what was seen
Open eyes when in a coma and look straight up
Smile at an unseen entity
All of this is very common in the end stages of life. This is a time and occurrence that none of us are going to understand until we are there.
Just as the journey through life is different for everyone, the journey towards life in heaven is different for everyone.
However, I want to assure you that all of these situations mentioned are very common.
This is a time to love and comfort the person leaving us for a better place.
Remember, hearing is the last of our senses to leave us. Even if your loved one is in a coma they can still hear you.
We may not be able to see what our loved one sees, but we can be assured that angels and loved ones long deceased are with us and waiting to escort our loved one into their new home and to meet Jesus.
“I can do it alone.” I’ve often heard this from caregivers. They think they can do it all alone.
However, we can’t!
Caregivers need help and support
I recently heard a story from a woman that had a stroke in her early 20s. Her husband insisted on caring for her by himself for the next twenty years. He refused to accept help from anyone. Now they are divorced and to receive the care she needs, she is in a nursing facility.
Remember:
Caregivers cannot carry the burden alone.
We all need time to rest and recharge our batteries.
Often we hear of the caregivers that pass away long before the one they are caring for. This is because they wear themselves out.
As caregivers we need to:
Don’t be afraid to reach out and ask for help.
Develop a schedule and strategy that will work.
Bring in or hire a team that can support you.
Explore your options and local resources.
Take time for ourselves
Remember we need a team or village
How do you prevent from making caregiving a lone sport?
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?
Working with Alzheimer’s patients, I am often challenged. How do I find activities that are enjoyable and engaging for my residents?
Some tips to keep in mind are:
Focus on the enjoyment of the activity and not the results. I had one lady that would play checkers with me. This mainly meant moving the pieces around the board. We made up the rules as we went along. Yet, she was enjoying herself so that’s all that mattered.
Be aware of physical impairments, including sight and hearing problems
Keep the individuals skills and abilities in mind
Relate to activities that were previously enjoyable through either hobbies or work life
Look for activities that are enjoyable for the person
Set a schedule for when certain activities are conducted {this can even include meals and bathing routine}
Consider the capabilities of the individual
What do you take into consideration when planning activities?
