They welcomed Grandchildren. They helped with their grandchildren’s education, carefully selecting tuition funds. They retired and in their wisdom started making preparations for their own retirement years. Mutual funds, IRA’s 401K’s were all selected with care. Retirements were planned and strategized and thoughtfully funded.
As they saw their own senior loved ones have to make difficult choices, Mom and Dad took their own steps to secure outcomes that would keep their wishes. They didn’t want to see their own independence jeopardized. They didn’t want to end up in that home like Aunt Penny did. They didn’t want to see their funds drained like Grandpa Howards’ were.
As much as they loved each of their kids, they didn’t want them squabbling over an inheritance like their dear friends from church did. They added layers of protection. They consulted trusted friends. They hired an attorney. They signed advanced directives. They had conversations. They circled the wagons and invited the whole family for a discussion. They sat down the family. They made their decisions. They expressed their desires. They even printed out plans and shared them with all of their children and trusted friends.
In order to exact the plans that worked for them, they set aside funds for a rainy day. They even purchased long term care insurance and began making sacrifices while not earning as they had in their working years. The plan after all should not remain a mystery.
They took every step imaginable in order to ensure their preferences would be made aware at a future critical decision points further down the road. Life Insurance was purchased in order to lessen the burden if they would have passed away before being able to enjoy their 80’s.
With all the planning seemingly done, there remained one seemingly unavoidable reality.
Meet Anosognosia. If you’ve heard dementia described, but aren’t familiar with this branch of the illness, understanding anosognosia may be shed some light on some familiar experiences you’ve had with your loved one.
So all the steps have been made to save for a rainy day. But there’s RAINCOAT RELUCTANCE. We can’t seem to admit that it’s raining.
Often when we describe the nature of brain disease, we try to put ourselves in the shoes, or really into the mind of our loved one suffering. This is our own way of ’empathetically rationalizing’ the disease. In a way, these are our own coping mechanisms. We say things like: “she doesn’t know any different” or “he’s happy in his own way”. One of the first elements dementia and alzheimers takes away from us is our very own awareness that we are afflicted. The pathway for someone afflicted with Alzheimers feels a lot like narrowing tunnel vision.
Anosognosia attacks our perception. Anosognosia can be understood as our lack of awareness that we are ill.
Who are we if our own awareness is gone?
I recently was asked by a dear friend to assist with his Mother. He was asking from nearly 2,000 miles away and his Mother was at an absolute time of crisis. While we came to ultimately understand that she had suffered a stroke, the signs were very typical of Anosognosia. She refused help. She was experiencing behaviors uncommon in her history.
While normally reserved and logical, I came to find my friend’s Mother in a bout of heightened confusion. While normally easy to understand, her speech was muddied. Her posture not upright. Her clothing disheveled. Her home a revealed signs of neglect.
It seemed the very first attack that this quickly onset crisis made was upon her own awareness and capacity to understand that she was in a crisis.
Fortunately the sudden arrival of my familiar presence helped her to stop challenging the paramedics who were fighting her reluctance. They knew, as was apparent and would have not been argued by her on a day where her self awareness was together. She needed to be seen at the ER. It was as though a gift of clarity came blowing in the window. Seeing a familiar face seemed to snap her out of her trance. Her reluctance dissipated. Her posture shifted. “Ok. Let’s go to the hospital”. What a sense of sudden relief by all of us. I assisted as she was loaded into the ambulance. We were now able to get immediate medical attention and ultimately validate our fears and assumptions. The CT Scan revealed that she had in fact suffered a stroke. The awareness was a small miracle amongst many needs for my friends Mother that we will now be able to address with insights. Awareness is often the first step in a positive direction.
I remember a lesson from a college lecture from some 20 years ago. My professor was at the time addressing information security and mentioned a thought I’ve never forgotten.
“Information is the one thing that can be stolen from us without our awareness that it is missing”- Professor William Flint, Miami University Oxford, Ohio
While I agree with this, I am going to add a new understanding to this theorem. Our awareness is the only thing that can be taken from us without us realizing it is missing. Meet Anosognosia. When our very own awareness is taken from us, the most horrifying part is that we may never realize it is missing. The playbook goes out the window. Earlier decisions vanish. Options become extraordinarily limited.
As the start of this article, we modeled a family. Maybe a family just like yours. They had saved for a rainy day. Just as my friend’s Mother has. But now it’s raining. And she didn’t know it. It’s human nature to be unaware of something-or maybe even to deny something that we are experiencing, just because it’s uncomfortable. This pausing to admit to our own problems is a dangerous point at which to deny that we need help. It pushes help away. It allows funds that we saved over a lifetime to quite literally-save our life. The critical care that we deliver is critical in the same way a healthy diet is critical to our existence. The longer we deny this, the quick fixes, or complete lack of any fix become our new normal. I urge all new families that we speak to about care for their senior loved ones to be honest about where they are in order to preserve where they would like to be. Having Raincoat Reluctance is a barrier to actually having enriching, safe, and healthy experiences as we age.
I offer this. 99% of people will deny or grossly underestimate their own need for care. Therefore, 99% of people will argue against the IDEA of care. We have worked diligently since 2004 to find a staff who understand as we do that the IDEA of care is hard to stomach, yet the experience of care, and the relationships that our caregivers build with are care recipients are 100% essential to quality of life.
I feel very fortunate to have provided comfort to families struggling with mental illness, dementia and alzheimers for years. As caregivers and advocators, we cling for signs of hope and comfort for our loved ones who are afflicted with these diseases. The one glimmer of hope that I have seen is manifested by the capable hands of our caregiving team and has been for 2 decades in Columbus, Ohio. The greatest impact we can make for someone suffering is the impact of our presence and with our direct one-on-one care. Home Care is about being honest about our needs and building essential relationships to ensure our independence.
Maya Angelou taught us something unforgettable about life and human memory that I think holds true in cases of advanced brain disease. Here is the comparison.
Maya Angelou said:
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
I belive that advance Alzheimers, Dementia, Anosognosia will selfishly take our memories. They will rob us of our awareness. They will wipe away loved ones names, familiar friends, awareness of sacred places. But even these absences will not take away our longing to be treated with love and kindness. As caregivers, adult children or spouses of those afflicted-we must arm ourselves with this message each day.
Ben Smith is Founder, President and Chief Caregiver In Charge at Always There Home Care. The prolific team of caregivers at Always There Home Care has enabled hundreds of families to enable their loved ones to remain at home. Call today to arrange a home visit with Ben to discuss solutions for your family. Try our 24-Hour Home Care Hotline: (614) HOME-CARE 466-3227 or visit www.HomeCareOhio.com