Denial is a normal human emotion, especially with symptoms as heartbreaking as dementia or Alzheimer’s, as no one wants to confront the disease for which there is currently no cure. But there are risks to caregiver denial.
Dangers that go along with caregiver denial are two-fold. Not only is your loved one at risk; but also you, the caregiver, is at risk. Learn more about the 13 dangers of caregiver denial and get some survival tips from acclaimed author and caregiver, Elizabeth Lonseth.
It doesn’t matter how many times you’ve been through the caregiving experience. It never gets easy. But a little education helps, and there are definitely some good pointers to keep in mind. Elizabeth Lonseth, author of “A Gradual Disappearance” — a concise, intimate and sincere guide for people dealing with Alzheimer’s disease or dementia — is a seasoned caregiver who has watched not only both her parents be diagnosed with memory impairment, but also both her husband’s parents. Her fourth time around is still difficult, but at least she has some awareness to help guide her in the Alzheimer’s journey.
“I was in my 30s when my dad was diagnosed with dementia. I didn’t know how to deal with it and was in denial. Guilt was also a problem. Then, eventually, my husband’s parents were both diagnosed and my husband and I went through the myriad of emotions and caregiving challenges with them, as well. My mom’s Alzheimer’s diagnosis is the 4th time around. It’s still hard, but mom played a role in her choices as I was educated on what I needed to do and how to get things in order.”
Elizabeth has been asked to speak to many caregivers and senior care professionals who have been affected by Alzheimer’s and dementia. Denial was a key theme and problem she discovered from her audiences, so she decided to write a book about the dangers of denial, which comes out on October 14, 2015. This interview is a sneak peek at the gems of wisdom you can expect from her upcoming book, “The Dangers of Denial: Embracing the Challenges of Alzheimer’s and Dementia.”
“Denial is a tool. It protects us. But if we stay in denial, it becomes a problem… sometimes with dire consequences,” Elizabeth notes. “People try to hide their problems. But if both the patient and their loved ones ignore changes in behavior, even if they are subtle, this can lead to problems.” An Alzheimer’s or dementia patient only has a small window of being objective. If they can confront the problems they’re experiencing in a timely manner, they can participate in decisions that involve their care and finances.
Here are seven dangers that can occur that Alzheimer’s and dementia caregivers need to be cognizant of when caring for their aging loved one:
1. They can get lost.
This is pretty straightforward. The brain doesn’t remember directions or locations as it did before memory impairment; even if the person has been to a destination a thousand times before. If your loved one gets lost they can get hurt or panic, which only leads to more problems.
2. They can hurt themselves or others.
If your loved one tries to do everything as they’ve always done, but in reality they require supervision, they are bound to hurt themselves or others. For example, ignoring the fact that they need a walker can lead to a fall, resulting in broken bones, displaced joints, hospitalizations and the use of pain medication. Also if a wife with memory impairment is caring for her elderly husband or vice versa, she could unintentionally hurt her spouse in every day care.
3. They can have a home accident.
Leaving your loved one unsupervised could lead to accidents in the kitchen, bath, stairs or around the house. Fires could even occur.
4. They can suffer from poor nourishment.
Shopping and eating healthy requires proper planning and cooking techniques. If a loved one has memory impairment, he or she will more than likely not be eating healthy. This is why it is so crucial to regularly check cabinets to survey whether healthy foods have been purchased and to make sure your loved one doesn’t look sick or too thin.
5. They can cause an accident from driving.
Surprisingly accidents from senior driving don’t happen very often, but when they do, they’re catastrophic. Your loved one, pedestrians and other innocent bystanders could be hurt or even killed in the event of an accident.
Elizabeth shares a story she remembers about an elderly gentleman who shouldn’t have been driving:
“In the late 1970s we were gardening in the front yard of our home in Seattle. A car came down our narrow street on Queen Anne Hill. It ripped the side mirror off our truck, and sideswiped our neighbor’s car, and continued to roll slowly on down the street. My husband took off running and easily caught up with the elderly man at the wheel, who was oblivious to the damage he had caused. My husband jogged alongside the car, talking to the gentleman for another half block before he convinced the driver to pull over. My husband found out where he lived and drove him home. His wife drove my husband back and surveyed the damage. She promised her husband would not get behind the wheel again. We could only hope that was the case.”
6. They can overdose on medications.
Overdosing on medications is quite common for seniors who suffer from Alzheimer’s or dementia. Organizing medications for your loved one to take on their own can even create problems as they may not understand the days of the week or whatever dispensing system you may have in place.
7. They can become a victim of elder abuse.
Elder abuse can be subtle. Husband or wife caregivers can have good intentions, but not understand they are being abusive. For example, Elizabeth discusses a situation she heard of where a husband was trying to make his wife better again. He was “yelling at his wife to get up and do the dishes, not realizing she mentally or physically could not.”
Elizabeth candidly notes that there are more problems that she discusses in detail in the book, but the ones listed are the biggest ones she has encountered in her experience as a caregiver in addition to questions and problems from audience members during her speaking engagements.
Family members also suffer from denial that their loved ones have dementia and Alzheimer’s, according to Elizabeth. Having a realistic perspective about your loved one’s illness and his or her needs is crucial if you’re thinking about their wellbeing. But it can be hard for family members to accept that their parent, spouse or family member has changed. It’s even worse when both the elderly loved one with the problem and the family member is in denial:
“When loved ones and family members are both in denial, this presents a huge problem as it puts the sufferer at risk, not to mention, they can’t participate enough in the decision making for their care needs.”
Here are the six dangers of denial for family members that Elizabeth discusses:
1. Losing the chance to make special memories.
If you’re in denial and walking on eggshells trying to avoid signs of the disease, you’re probably not going to enjoy the time you have left with your loved one. For example, Elizabeth didn’t get a lot of quality time with her dad as she was so young when he was diagnosed and she didn’t know how to deal with the disease:
“I was in denial with my father and I avoided visiting him as often as I used to. It was so painful seeing this brilliant geneticist no longer able to hold a long, intelligent conversation. His communication skills became that of a young child. So instead of visiting every month like I had been, I came every other month or every three… Deep in denial, I lost the chance to create special memories with my father.”
Elizabeth happily mentions that she and her mom are still having a great time because she is not in denial and knows what to expect from the disease: “I did get mom to laugh on Monday quite a bit, so that was wonderful.”
2. Forfeiting being the best advocate for your loved one.
If you’re in denial, you can’t be your loved one’s advocate. Someone who doesn’t love them may have to take over, which can create even more problems, both emotionally and financially.
3. Not getting legal papers in order.
“Without Power of Attorney (POA), you’re not going to get anywhere with anything,” comments Elizabeth. Whether it’s social security, IRS, or even utility companies or banks. People need to know you’re the one in charge.
4. Family conflict.
Family conflict can create all kinds of frustrations for everyone. If some of the members are in denial, it adds to the conflict; and maybe even an old conflict can resurface. The family members in denial don’t help out and the aware ones take on multiple burdens; sometimes on their own. Often the ones in denial accuse their siblings of ‘over reacting.’
5. Loss of financial resources.
If someone is suffering from memory impairment, they are no longer fit to handle their finances. If the family member or caregiver ignores what’s was going on with mom and dad, stocks will get sold at the wrong time and sometimes bank accounts can be completely wiped out.
Elizabeth warns that it’s hard because often parents and/or loved ones don’t want to let you in. “Finances are private. Parents don’t want to share this information with their children. But it’s crucial you discuss financial plans ahead of time so that your family doesn’t fall under financial hardship.”
6. Stress involving illnesses and even the death of the caregiver before the patient passes away.
It’s not uncommon for family caregivers to put their own health at risk when they are in denial about the help they need caring for a loved one. Lonseth points out that family caregivers over age 66 have a 63% higher mortality rate than non-caregivers, and that “often the caregiver dies before the loved one they are taking care of does.”
In fact, Elizabeth notes, “There are couples who have been married 40-60 years, and one goes down hill and the other doesn’t want the rest of the world to know. The caregiver gets sick and the person with dementia doesn’t have care.”
This is especially scary. Family’s need to be cognizant of this sort of problem to prevent it from happening.
It’s no secret that Alzheimer’s and dementia can take a toll on caregivers. Elizabeth graciously shares some of the tips that have worked well to help embrace the disease as well as survive the disease as a caregiver once denial is no longer an issue:
“The Dangers of Denial” is an expansion on “A Gradual Disappearance.” The short, easy-to-read guide is a complete focus on the denial aspect of Alzheimer’s and dementia as Elizabeth feels so many caregivers and family members need to be aware of the risks involved in denial.
Elizabeth discusses that there are many levels of denial. For example, you may acknowledge that your loved one suffers from memory impairment, but you may think professional help is not needed. “Many people think they can provide all the care themselves. But the truth is, there is awareness, education and medical knowledge that is needed. If your loved one is diagnosed with a heart problem and they need surgery, you wouldn’t take them home. Memory care needs to be approached in the same way. You need help, even if it’s someone coming to the home to provide care,” Elizabeth comments.
So take heed of Elizabeth’s expert advice.Talk to your loved one’s doctor about your options. Research memory care communities near you, and most of all — recognize when there’s a problem and be your loved one’s advocate. No one knows them better than you.
Elizabeth’s latest book comes out October 14. For more information, view her website.
In addition to “A Gradual Disappearance,” Elizabeth Lonseth is the author of a pair of Christian fiction novels set in the Pacific Northwest: “Leave it With Him” and “Cares of This World.” You can learn more about Lonseth’s life and work, or inquire about speaking engagements, at her website: www.elizabethlonsethnovels.com.
Do you have any caregiving tips for families recently diagnosed with Alzheimer’s or dementia? Share your thoughts in the comments below.