08/16/2016
Been there done that. I see things so differently from the other side. In just a few days, my Dad will mark year number 7 in Heaven. He had to wait a while for Momma to join him, but on December 24, 2014 she made it Home. I miss them much but continue to celebrate their lives with family and friends.
Looking back, I see things in such a different light. I am not "in" the moment of caring for them. I learned much. Some things I did right. Some things I did more right. But what I do know, is that i did not want them to slip away. I pretended that Momma "just forgot" to put salt in green beans and used sugar instead. I always thought she was a "homebody" and just did not want to get too far from home. Now, I know she feared she would lose her way.
I see my friends struggle with many of these same issues and found the artiicle posted below (reposted from A Place For Mom) both poingant and insightful. Like many, my control soon gave way to denial. In retrospect, my burdens were heavier because I could not let go of something I really did not have anymore.
Reality is, you do the best you can everyday. Everyday is different, your best today may not work for tomorrow. But the big new is you are not alone. Come see us at Boyd Cottages to see how we can help.
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13 Dangers of Caregiver Denial
By : Dana Larsen
Denial is a normal human emotion, especially with symptoms as heartbreaking as dementia or Alzheimerâs, as no one wants to confront the disease for which there is currently no cure. But there are risks to caregiver denial.13 Dangers of 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.
Dangers of Caregiver Denial
It doesnât matter how many times youâve 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 âA Gradual Disappearanceâ â a concise, intimate and sincere guide for people dealing with Alzheimerâs disease or dementia â is a seasoned caregiver who has watched not only both her parents be diagnosed with memory impairment, but also both her husbandâs parents. Her fourth time around is still difficult, but at least she has some awareness to help guide her in the Alzheimerâs journey.
âI was in my 30s when my dad was diagnosed with dementia. I didnât know how to deal with it and was in denial. Guilt was also a problem. Then, eventually, my husbandâs parents were both diagnosed and my husband and I went through the myriad of emotions and caregiving challenges with them, as well. My momâs Alzheimerâs diagnosis is the 4th time around. Itâs 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.â
Elizabeth has been asked to speak to many caregivers and senior care professionals who have been affected by Alzheimerâs 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, âThe Dangers of Denial: Embracing the Challenges of Alzheimerâs and Dementia.â
7 Dangers of Denial for the Patient
âDenial is a tool. It protects us. But if we stay in denial, it becomes a problem⌠sometimes with dire consequences,â Elizabeth notes. âPeople 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.â An Alzheimerâs or dementia patient only has a small window of being objective. If they can confront the problems theyâre experiencing in a timely manner, they can participate in decisions that involve their care and finances.
Here are seven dangers that can occur that Alzheimerâs 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 doesnât 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 theyâve 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 doesnât look sick or too thin.
5. They can cause an accident from driving.
Surprisingly accidents from senior driving donât happen very often, but when they do, theyâre 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 shouldnât have been driving:
âIn 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 neighborâs 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.â
6. They can overdose on medications.
Overdosing on medications is quite common for seniors who suffer from Alzheimerâs 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 âyelling at his wife to get up and do the dishes, not realizing she mentally or physically could not.â
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.
6 Dangers of Denial for Family MembersElizabeth Lonseth Senior Living
Family members also suffer from denial that their loved ones have dementia and Alzheimerâs, according to Elizabeth. Having a realistic perspective about your loved oneâs illness and his or her needs is crucial if youâre thinking about their wellbeing. But it can be hard for family members to accept that their parent, spouse or family member has changed. Itâs even worse when both the elderly loved one with the problem and the family member is in denial:
âWhen 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 canât participate enough in the decision making for their care needs.â
Here are the six dangers of denial for family members that Elizabeth discusses:
1. Losing the chance to make special memories.
If youâre in denial and walking on eggshells trying to avoid signs of the disease, youâre probably not going to enjoy the time you have left with your loved one. For example, Elizabeth didnât get a lot of quality time with her dad as she was so young when he was diagnosed and she didnât know how to deal with the disease:
âI 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.â
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: âI did get mom to laugh on Monday quite a bit, so that was wonderful.â
2. Forfeiting being the best advocate for your loved one.
If youâre in denial, you canât be your loved oneâs advocate. Someone who doesnât love them may have to take over, which can create even more problems, both emotionally and financially.
3. Not getting legal papers in order.
âWithout Power of Attorney (POA), youâre not going to get anywhere with anything,â comments Elizabeth. Whether itâs social security, IRS, or even utility companies or banks. People need to know youâre 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 donât help out and the aware ones take on multiple burdens; sometimes on their own. Often the ones in denial accuse their siblings of âover reacting.â
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 whatâs 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 itâs hard because often parents and/or loved ones donât want to let you in. âFinances are private. Parents donât want to share this information with their children. But itâs crucial you discuss financial plans ahead of time so that your family doesnât fall under financial hardship.â
6. Stress involving illnesses and even the death of the caregiver before the patient passes away.
Itâs 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 âoften the caregiver dies before the loved one they are taking care of does.â
In fact, Elizabeth notes, âThere are couples who have been married 40-60 years, and one goes down hill and the other doesnât want the rest of the world to know. The caregiver gets sick and the person with dementia doesnât have care.â
This is especially scary. Familyâs need to be cognizant of this sort of problem to prevent it from happening.
Survival Tips and Tips for Facing Denial for Dementia Caregivers
Itâs no secret that Alzheimerâs 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:
Tips on Facing Denial
â˘Start writing in a journal to get your thoughts on paper and identify fears or anger you may be experiencing (these are key emotions in denial)
â˘Seek out a friend or loved one to talk to about your denial
â˘Recognize that anger is a sign
â˘Make it a team effort comprised of friends and family members as the support will help everyone involved
â˘Get educated: The sooner, the better, from ALZ.org, APFM blog and newsletter (subscribe on the right column), or the MayoClinic blog and newsletter (subscribe on the left column)
Basic Survival Tips
â˘Take a break
â˘Use humor to help you through
â˘Get a support group
â˘Seek professional help
Embracing Memory Care
âThe Dangers of Denialâ is an expansion on âA Gradual Disappearance.â The short, easy-to-read guide is a complete focus on the denial aspect of Alzheimerâs 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. âMany 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 wouldnât take them home. Memory care needs to be approached in the same way. You need help, even if itâs someone coming to the home to provide care,â Elizabeth comments.
So take heed of Elizabethâs expert advice.Talk to your loved oneâs doctor about your options. Research memory care communities near you, and most of all â recognize when thereâs a problem and be your loved oneâs advocate. No one knows them better than you.
