Tag Archive | long-term memory

Insights: How Life Experiences Factor Into Dementias and Alzheimer’s Disease

Life experiences are factors in dementias and Alzheimer's DiseaseThis post begins a series that provides us as caregivers a perspective into the behaviors of our loved ones with dementias and Alzheimer’s Disease that I’ve never seen discussed anywhere else. 

I’m a big-picture person. I believe that there are tangible connections among things for everything and everybody.

In other words, nothing is random, even if it appears that way. There’s a logic to everything and everybody. However, the only way to find the order and the logic is to back away from the immediate present and abandon the tendency to believe that it exists in a vacuum.

Nothing and nobody exists in the vacuum of a moment in time. Everything and everybody is the sum of their parts over a continuum of time.

By looking at the whole picture of our loved ones’ lives – life experience, temperament, and personality/quirks/flaws/foibles (which we all have, by the way) – we can gain insight into how those factor into the behaviors we see in their journeys through dementias and Alzheimer’s Disease.

Knowledge is power in this case. Because if we understand what factors of a lifetime are driving the behaviors we see, then we can find ways that are beneficial for us and for our loved ones to respond to those behaviors.

I will be the first to admit, from personal experience, getting our responses consistently right is not easy and, at times, because our own emotions (especially as children or grandchildren dealing with parents and grandparents where the landscape, even in the best of circumstances, is complex and complicated) are intimately involved, we will fail. We will fail miserably.

But, as with anything else in life, we have two choices after we fall flat on our faces. We can either quit in defeat or we can get up and try again with more resolve to move forward successfully.

It’s my opinion that a substantial part of the fatigue that we experience as caregivers for our loved ones with dementias and Alzheimer’s Disease is not physical, but instead emotional and mental.

And the resolve to not quit emotionally and mentally in going through this journey with our loved ones is a significant contributor to that fatigue.

Do it anyway. For them and for ourselves. Because when we stand alone at the end of this journey we will find out that we gained more than we lost.

We will know ourselves better than most of us probably really want to know ourselves.

We will find strengths that we didn’t know we had. We will be surprised at our endurance and the levels of adversity we had to persevere through.

But we will also find our weaknesses and we will see our shortcomings. A lot of these come to light in the years that follow the journey through dementias and Alzheimer’s Disease. They come to the forefront of minds slowly as we consider and reflect on the journey.

As painful as that is – and it is very painful – it is positive. Because once we see areas where we need to change, we have the opportunity to change. We have the opportunity to continue to reap the benefit of growth.

That’s why I personally advocate remembering, examining, and considering the journeys we’ve been through with our loved ones. Some people are not able to do that and that’s okay, but personally for me, it has been an unparalleled period of change and growth in my life.

Life experiences factor significantly into the behaviors of our loved ones with dementias and Alzheimer’s Disease. 

Because short-term memory is impacted more than long-term memory and the core of our perspectives on life are formed during the early years of our lives, the life experiences of the first twenty years of our loved ones lives seem to drive some of the behaviors we see.

For example, my mom’s mother died when she was three days old. Her 78-year-old grandmother and 80-year-old grandfather immediately took Mama and her dad – an absent binge drinker under stress (he disappeared for several days after his wife died while the maternal and paternal grandmothers fought over custody of his daughter) and a World War I veteran whose lungs had been permanently damaged in a mustard gas attack in France – into their lives.

Although Mama was loved, it was an unsettled start to life with constant moves and frequent absences of her father (hospitalizations at the VA hospital, drinking binges, and a few arrests for public drunkenness). 

Mama - 6 years oldWhen Mama was five, the fragile environment of love began to disintegrate.

Her grandfather, her best friend and trusty ally, died. A year later her father succumbed to pulmonary disease.

The memory that haunted her most of her life was the 30 minutes or so before her father died. He told Mama he wanted to talk with her, but she wanted to go outside and play with her cousins. Her father kissed her and said, “Go ahead.”

That was the last time Mama saw her father alive and her guilt over not knowing, because she was six years old, that he was dying and not staying with him when he wanted her to followed my mom all her life.

Shortly after her father’s death, Mama was sent away from the family she knew and loved to live with an aunt she didn’t know and who didn’t want her. For the next 12 years, Mama endured hell on earth. She was all alone in the world. She was mistreated, lied to, and stolen from.

Mama having fun with her grandkidsMama finally escaped and was able to overcome a lot of adversity to become an incredibly accomplished woman and the mother that I loved with all my heart, the wife that my dad cherished and was completely devoted to, and the friend that so many people loved and cherished.

But the road to becoming those people was strewn with a battle to overcome fear, anger, resentment, and bitterness, which Mama finally did in late middle-age. But the one thing Mama never completely overcame was her suspicion that people couldn’t be trusted and, given the opportunity, they’d take advantage of her.

When Mama’s dementias and Alzheimer’s Disease were in full bloom, those life experiences of her first 18 years were primary factors in her behaviors.

The loneliness came back. The fear came back. The anger came back. The bitterness came back. The resentment came back. In full force.

And her normal tendency toward being suspicious of everyone as a possible threat to take everything away from her blossomed into a full-throttle paranoia that I wouldn’t have believed unless I’d been the one who’d seen it and been on the receiving end of most of the time.

All of these things took me by surprise because they all came at once in high gear. I was overwhelmed and unprepared emotionally and mentally to deal with the onslaught.

At first I blamed myself. I kept wondering – and looking for – what I had done or said to trigger Mama’s behaviors. Every place I even thought there was a possibility that something I’d said or done was the trigger, I changed immediately.

But Mama’s behavior didn’t change. In fact, it got worse.

It was hard not to take it personally. There were many times when I’d walk away to defuse the situation and just sob because I didn’t know what to do and I couldn’t help Mama.

But I thought about the whys of Mama’s behavior day and night as I searched for answers and ways that I could help. And in the process, I found compassion, empathy, and patience.

Why? Because I realized my mom was that scared six-year-old little girl who had her whole life ripped apart and thought she was all alone in the world. And that six-year-old girl knew what lay ahead in the next 12 years of her life and she was determined not to let it happen this time because all of the emotions associated with that were front and center.

My understanding of how my mom’s life experiences were factors in her dementias and Alzheimer’s Disease gave me insights into why she was doing what she was doing and into ways that I could tangibly quiet her fears and soothe – not entirely – those raging emotions associated with the most disruptive time of her life.

So I urge all of us, as we’re able, to go back over our loved ones’ lives and see where the connections are, even as far back as early childhood, that factor into the behaviors we see as they walk the journey through dementias and Alzheimer’s disease.

I promise you that it will be worth it not only for us as caregivers but for our loved ones as well.

 

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 10 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this eleventh installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the tenth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 10, which gives comprehensive information on how to acknowledge, recognize, and respond to the tenth step in the journey through dementias and Alzheimer’s Disease: more frequently going back in time (long-term memories) and losing connection with the present (short-term memories and recognition of loved ones).

This chapter discusses why this step occurs and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9, and, with this post, Chapter 10.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 10: ‘Time Reverse and Rewind”

“The next step in the journey with our loved ones with dementias and Alzheimer’s Disease can be difficult to comprehend and adjust to, since it usually appears randomly and unexpectedly. This step is where our loved ones seem to frequently go back in time in memories, in conversations, and in thinking and they often don’t recognize us or know who we are.

I first read Katherine Anne Porter’s The Jilting of Granny Weatherall in high school. It is the story of an 80-year-old woman who has dementia and/or Alzheimer’s Disease. Neither of these names for neurological impairment existed, however, when Porter wrote this short story in 1930. Instead, elderly people were just ‘senile.’

The story made a strong impression on me even as a teenager, even though I never had steady and intimate contact with elderly people (both my parents lost their parents when they were very young and, as only children who were much younger than their cousins, had no aunts and uncles except one on my mom’s side left by the times we kids came along) and had never seen anything that looked like dementias and Alzheimer’s Disease.

I found Granny Weatherall fascinating and I found the juxtaposition of where she was in her own mind versus what was actually going on around her intriguing.

If you have not read the story, you should.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 8 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this ninth installment of brief excerpts from each chapter in the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the eighth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 8, which thoroughly discusses how to acknowledge, recognize, and respond to the eighth step in the journey through dementias and Alzheimer’s Disease: wandering and wanting to go home.

This chapter discusses in-depth the reasons that wandering and wanting to go home are part of the eighth step in the journey through dementias and Alzheimer’s disease. It also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we navigate through this step in the journey.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, and, with this post, Chapter 8.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 8: ‘Can’t Find My Way Home’”

“Wandering is the next step of the journey our loved ones with dementias and Alzheimer’s Disease go through. Wandering can be characterized by endless walking within the safety of a house or facility, but more often it is characterized by going outside and either walking or driving (if our loved ones are still driving) aimlessly until our loved ones are lost and either can’t or don’t know they need to or how to come back.

There are many stories of elderly people with dementias and Alzheimer’s Disease who were wandering on foot or in a vehicle who died before they could be located. These people have been hit by vehicles while walking in the middle of the street, walked into woods and gotten lost, or have driven vehicles off the road over embankments or into bodies of water.

Often, the impulsive nature of wandering – a sudden need to be stimulated or being on a mission to go somewhere or find something – leads our loved ones with dementias and Alzheimer’s Disease to just pick up and go, often without adequate clothing in cold weather, and often in the middle of the night.

Wandering may be tied to visual hallucinations as well, especially if the visual hallucination is of a loved one. When that person leaves, our loved ones may want to follow and go with them.

However, the main impetus of wandering seems to be rooted in the desire to go home. Our loved ones with dementias and Alzheimer’s Disease begin talking frequently about wanting to go home – even if they’re in a home they’ve lived in for many years – and wanting to find loved ones, many of whom have been dead for years.

It’s important to understand the context of where our loved ones with dementias and Alzheimer’s Disease are neurologically and memory-wise. While dementias and Alzheimer’s Disease affect short-term memory and inhibit new memories from being formed, long-term memories are and stay, for most of the duration, intact. And those long-term memories are where our loved ones begin spending a lot of time.

Therefore, home, for our loved ones is most often their childhood or early adulthood homes, and those homes and the people who were there are what our loved ones are looking for and where they want to go.