(Crystal A. Proxmire, Oct. 14, 2017)
Novi, MI – Loretta and Gregory were married at the age of 16, over 40 years ago, and have always been true to each other. Yet as Gregory began to age, Alzheimer’s started to take its toll and a painful reality emerged in their relationship.
“Every day he was accusing his wife of cheating,” said Education Program Coordinator for the Greater Michigan Chapter of the Alzheimer’s Association Lauren Centar at the Caregiver’s Expo on Saturday at the Suburban Collection in Novi. “The wife knew this was because of the dementia, but it was still painful to hear every day.”
Accusations of infidelity, stealing, and other plots are common in those with dementia, but if loved ones can pay attention and put themselves in the mind of the person who is struggling, sometimes the answer can become clear.
“Over the years this woman had become a collector of antiques, and she had many antique mirrors through the house, Centar said. “Someone visiting figured out he would see his reflection in the mirror and not recognize himself, and he’d think ‘Who is this strange man, in my house, here to see my wife?’”
Loretta got rid of most of the mirrors and covered the rest with cloth, and harmony was restored in the home.
The story of Loretta and Gregory (pseudonyms added by author) is not unlike thousands of other stories out there about how dementia has changed people and families. Centar’s presentation Saturday sought to educate people about dementia and provide support for those who are caring for a loved one with the condition.
“I think sometimes caregivers need to also be detectives. Dig deeper and find out what is causing the behaviors and the feelings. If you can find what the triggers are, it can make a difference,” she said.
PUTTING YOURSELF IN THEIR PLACE
Much of the challenge in caring for someone with dementia comes from the behaviors and the inability to communicate their needs. “When someone has dementia their long term memory is intact but their short term memory is not. They wake up every day in a new place and they don’t know where they are or why. This is not home,” Centar said.
She also talked about how they may feel like they have no purpose and nothing to do. And they simply lose the ability to remember things that have happened in the past days to even minutes. The neurons in the brain stop firing and the ability to create new memories is gone, she said.
That’s why repetition is so common – asking the same questions over and over, rummaging through a purse for hours on end, pacing back and forth. Their brain just does not remember that they’ve been doing it.
The memory loss can be frustrating and even painful for loved ones. “We want our loved ones to know who we are, to know what day it is. But they can’t. We need to connect with them no matter where they are,” Centar said. “They can no longer accommodate our needs. We are here to meet their needs.”
She urged caregivers to focus on the emotions involved in interactions, not the facts. Correcting them is ineffective because of the short term memory loss, and it creates needless stress for both the loved one and the caregiver.
“We cannot bring them to our reality,” she said. “Join the person in his or her reality by trying to see the world through his or her eyes…. If they think it’s 1972 and they think they have to get to the bus stop and pick up their kids, then meet them there. It is 1972. Tell them that you will go pick up the kids later.”
Compassionately allowing the behavior and questions may be hard, but fighting it can be even more futile and just lead to agitation. Correcting does no good, she said.
PURSES AND LOST WALLETS
One woman in the audience talked about her mother, and how she spends hours organizing and re-organizing her purse. “I feel bad for her. Is it really right to let her do that?” she asked.
Centar said “You have to pick your battles. If the behavior isn’t harmful it may be best just to let her do it. It’s more annoying to you than it is to her.” It can also be therapeutic. “When they wake up in the morning, they don’t know what their purpose is. Help them have a purpose…. Let them help do tasks – fold laundry, rinse dishes. We start to list the thing they can no longer do. We need to look at what they can do.”
One behavior that comes up in dementia patients is making accusations against others. Like Gregory and his fear of infidelity, it is easy for a brain to make the leap from the inability to find an item to the idea that someone must have stolen it.
“With my grandmother, she was constantly accusing us of stealing her wallet,” Centar said. “She would lose it and she kept accusing us. Finally we got smart. We bought multiples of the same wallet so when she would lose it we’d just give her a new one and say we found it.”
Stealing and hording are also common for those with dementia. “You have to remember that a lot of people in this generation grew up in times where they did not know where their next meal was coming from, so to them a sugar packet, a cup of creamer, is something that makes them feel secure,” Centar said. “In many care facilities you open up drawers and you find those.”
One audience member wondered what to do about their loved one who was stealing from stores. Another shared a story about how their grandfather worked at a restaurant that he loved. “Everyone there loved him. He was friendly and nice to everyone. But stuff started going missing. The restaurant owners put in cameras to find out who was taking stuff and then one day he was leaving and had a box with him. They said ‘what is in the box?’ and it was sugar packets. They said ‘We love you but we have to let you go. It was hard for him.”
Centar stressed that dementia patients don’t realize what they are doing and won’t remember it later. She said there are caregiver and patient cards that talk about the challenges of dementia, so that if they get in trouble or have an awkward situation, they can hand the card to the person they are interacting with, such as a store security guard or waitstaff at a restaurant, to help put the situation in context.
GETTING LOST AND STAYING SAFE
In addition to the cards, the Alzheimer’s Association has identification tags and bracelets for patients and caregivers. Patients often wander off and an ID bracelet can help those who find them – whether they have simply wandered off in a store or if they have gotten out of their home or care facility. Centar said caregivers should also have information on them. “What if you are in an accident? How will whoever find you know that they need to send someone to your house, that there is someone you are caring for that will need help if you can’t return?”
She also stressed the importance of alerting police or medical personnel of a person’s medical status if they are called to the home. Sometimes people with dementia can get angry beyond control. “If you have to call 911 please, please, please let the dispatcher know that the person you are caring for has dementia. Make it clear to law enforcement before they enter the home because that will change how they handle the situation.”
DIAGNOSE AND DUMP
One of the biggest challenges Alzheimer’s Association is seeing is doctors simply calling all memory related illnesses “dementia,” prescribing a medication and telling folks to come back in six months.
“It’s up to us to advocate and ask questions,” Centar said. She explained that dementia is an umbrella term and Alzheimer’s is just one of 70 different kinds of dementia that a person can get. Different kinds of dementia come from different medical issues and the treatments may vary, yet it’s easy for physicians to just make an assumption and write a prescription.
The Alzheimer’s Association does work with those studying the causes of dementia and even clinical trials to help find cures. Those who are interested in the clinical trials can find out more though the group’s website or hotline.
The Greater Michigan Chapter of Alzheimer’s Association is headquartered in Southfield with satellite offices through the state. There is a 24 hour hotline that people can call if they need resources or support in caring for a loved one. “Almost all of us answering these calls have been a caregiver. We’ve been there. We’re not going to judge,” Centar said.
Her final thought to caregivers was that “you cannot be an adequate caregiver if you aren’t taking care of yourself.” The Alzheimer’s Association can also help people with that.
Find more online at www.ALZ.org/CARE or through the hotline at (800) 272-3900.
This presentation was part of a Caregiver Expo hosted by the Area for Agency on Aging 1B. A story about the event will be posted in the coming days. For more info on AAA 1B visit http://www.aaa1b.org/