It started with observable issues. She would forget to take her medications, completely unaware of the oversight. Church and neighborhood friends would stop by, alarmed to find that she had turned on a gas stove to heat the house and had no food on hand to eat.
The problem got worse as time went on. She would forget to eat, triggering diabetic episodes. She continued to forget to take needed medications, leading to hospital stays. Police even had to break down her door because she hadn't been reachable for days. They found her dehydrated and unaware of the concerns family and friends expressed.
Finally, the family relocated her to an assisted living facility. For months, she did well. But then she started saying strange things. When Carroll visited her, she found some pills near the baseboard of her floor. It became apparent that her grandmother was no longer able to live on her own, even with the help of the assisted living facility.
Finally, Carroll’s grandmother asked to go to a nursing home in her hometown. After two weeks, she died. Carroll was brokenhearted.
The sad thing is that Carroll’s grandmother’s story is common. Along with numerous health problems, her grandmother experienced an undiagnosed form of dementia. This led to the bizarre and forgetful behaviors that wreaked havoc on both her life and the lives of those around her.
What Is Dementia?
To understand dementia, it’s important to know that dementia isn’t an illness in itself. According to the World Health Organization (WHO), this umbrella term encompasses a number of different brain illnesses -- like Alzheimer’s -- that have an effect on memory, making it difficult to function without help. These illnesses can influence the way a person think or acts.
Currently, there are more than 47 million people living with dementia in the world. And this number is expected to climb to more than 75 million people by the year 2030. Further, the number of cases is expected to triple by 2050, leading health experts to scramble for both funding and cures for these devastating health issues.
The problem is that most people don’t understand dementia. This leads to difficulties in obtaining proper care and an overall issue in communicating with loved ones. The result is an exhausting and expensive circus filled with confusion and hopelessness.
Understanding Dementia
The experience that Carroll went through led her to understand the stories of dementia victims from an inside-out perspective. That’s because Carroll is a registered nurse who now works in a nursing home full time. In this process, she uses the knowledge she obtained through her grandmother to help both patients and families.
Carroll says that the first step to helping a loved one with dementia is not getting hung up on the diagnosis itself. “View each person as an individual and give them credit,” Carroll says. “Sometimes they know more than we think they do.”
Engaging in this thinking process means refraining from judging daily occurrences as final. Dementia comes and goes, so your loved one may remember you one day and forget your name the next.
Make it a point to redefine your definition of what it means to receive love. “One of the main things is you have to change your expectations of what love is,” says Carroll. “It seems to me that, even when the memory goes, they still remember that they’re married. They still remember who they love; they still remember their families.”
Further, it’s important to realize that dementia is not a one-stop shop. It’s often a slow descent that may be filled with ups and downs for years.
“They think everyone forgets everything, but that’s more the end stage,” Carroll says. “During the beginning stages, they still remember things that are important to them. They might not remember something that happened minutes ago, but they remember something that happened 20 years ago.”
When Those with Dementia Need Help
It’s also essential to draw a line when your loved one’s safety is compromised. Deciding to move a loved one to an assisted care facility or a nursing home can be emotionally taxing on families, but it’s necessary.
“What’s hard about it is that if somebody has a spouse that wanders off or forgets to do basic care…family members know that they can’t keep an eye on them all the time. They’re going to put themselves in dangerous situations,” Carroll says. “But that person doesn’t understand why they’re there and why they can’t go home. They might be very angry at the person who put them there.”
When this happens, reinforcing love is the best thing you can do to help the person affected. Be there for them emotionally, even if you can’t be there physically.
“Give them available time and have them call,” Carroll says. “Just hearing that person’s voice on the phone grounds them if the family member can’t get there that day. Remind them that you love them and of little things that mean a lot.”
Make the new facility as much like home as possible. Don’t just send them packing with nothing of personal meaning. This will help your loved one to adjust.
“The more of (their) home that you can bring with them, the more this will help them to adjust,” Carroll says. “Bring art, books, and pictures that mean a lot to them. Play the kind of music that they’re used to listening to. And if there are any hobbies that they do, bring them along.”
Visiting and letters are also important. This helps to keep your loved one rooted in experience and love. “Even if somebody’s losing their eyesight, somebody else can read a letter to them written by someone that they love,” says Carroll.
And don’t scold your loved one for forgetting names and faces. This is a part of facing dementia. It’s not their fault.
“It’s heartbreaking. My grandma realized that I was someone that she knew…But sometimes she thought I was my mother, and sometimes she thought I was my daughter,” Carroll says. “She’d call me by my mom’s name, and I’d be like ‘No grandma, I’m her daughter.’ She might remember soon after, or she might continue calling me that name, and I’d have to understand.”
Carroll says that there is a bit of madness in this respect. Your loved one might remember you one day, and they might forget you the next. However, this is no reason to skip visits.
“You can still visit. Make them feel safe and cared for,” Carroll says. “I sat with one patient for 10 minutes and just put lotion on her hands. I held her hands and talked to her, and she calmed down. Sometimes it’s the littlest things that can bring someone back to feeling safe.”
Remember that love is the underlying thread that dementia can’t destroy. It’s always there, even if it’s silently waiting in the wings. Love never dies.
“Somebody can forget to comb their hair, eat and brush their teeth. They can be completely out of touch with reality, but they will remember that they love someone,” Carroll says. “This is especially true of spouses. It always amazes me that they come back to that. That’s the most beautiful thing about what I do, seeing that.”
The moral of the story is that you can’t assume that people with dementia don’t understand love. They do. So love them the same way you would have before they became ill. And do this every single day -- no matter what.