Tag Archive | journey

The Power of Music and Memories in The Journey Through Dementias and Alzheimer’s Disease

Music Memories Dementia Alzheimer's DiseaseI’ve always tracked time through music. I can hear a song and go back with photographic accuracy and precision to the exact time, the exact place, the exact month, and the exact year that I either first heard it or when it made such an impact on me that I’ll never forget it.

Usually these jaunts will prompt me to walk back through other times and places in my life – perhaps to test my own cognition – to see if I still remember them with the same level of accuracy with regard to details and precision (even down to wallpaper and house layouts in each of the many houses we lived in growing up). So far, so good.

But yesterday afternoon I heard a song that took me back to almost five years ago – July 12, 2010, to be exact – and hit me with the same effect it did when I heard it that morning.

Unexpected tears began to fall as I relived that memory and the memory I relived that day that took me even further back in time, way before dementias and Alzheimer’s Disease came to take my mom and me through its journey together.

On Sunday, July 11, 2010, in the very wee hours of the morning, my mom had the psychotic meltdown that would land her in a geriatric psychiatric hospital for almost two weeks and that would give me the grim diagnosis that she was in the mid-to-late stages of vascular dementia and Alzheimer’s Disease.

When my phone rang at 7:15 a.m. that Sunday morning, I already knew it was about Mama. The week before had been insane – with wild and dramatic mood swings, mostly negative, with each one getting more dire, and out-of-the-ballpark suspicion and paranoia – so I knew we were coming to a point where something was going to break.

Quite frankly, I wasn’t sure it wasn’t going to be me first. I was restless, anxious, unable to sleep that Saturday night, and as I paced and prayed, I kept telling God He needed to do something because there was nothing left that I could do to help Mama.

And He answered those prayers. I wasn’t at all surprised when the voice on the other end of that early morning call identified herself as someone from one of the psychiatric hospitals in the area. She said that Mama had been brought into the emergency room around 3:30 that morning (Mama had called 911) and they had determined that she needed to go to the only geriatric psychiatric hospital in the area. 

The lady on the phone ask me if it was okay to involuntarily commit Mama. I said the only thing I knew to say at that point: “Absolutely.”

She then told me the procedure for going over and changing it to a voluntary commitment by me, told me what to pack for her, and told me that Mama would be there by early afternoon.

I hung up, surprised, but not surprised, my mind racing about what I needed to do that day and what I was looking at needing to do within the next couple of weeks. It was all a little overwhelming, but I tackled the tangible stuff first that I didn’t have to think about.

I went over to Mama’s apartment in the independent retirement community she had decided to move to, without ever discussing it with me, five years earlier. I opened the door and decided to pack the bag I needed for her, clean up, and make sure there was nothing pressing I needed to take care of.

I packed Mama’s bag, labeling all her clothes so that they wouldn’t disappear. Then I decided to clean the apartment, make her bed, and do a thorough inspection of everything.

In the midst of cleaning (the refrigerator, which I tried to keep an eye on, but which I’d not been able to since she had pretty much banned me from her apartment the last couple of weeks before that, made me wonder how she had not killed herself with some of the science experiments that were in there), I found a notebook that she’d accused me of stealing two days before, hidden behind the only place I did not look when searching for it the day she told me that I’d better leave because she’d called the police to come and arrest me.

I shook my head as tears rolled down my cheek for my mom. I found a couple of bills that needed to be paid, so I took them home to pay. I knew even then that she would not be able to come back to that apartment to live, so I got on her computer and sent emails to her friends and let them know she wouldn’t be back on (no details), then unplugged the cable modem (I had been paying for her internet service) to take back to the cable company the next day.

Once everything was clean, I got Mama’s bag and her purse and the important papers I needed, and anything else valuable to take with me, and left to do the rest of what needed to be done that day.

The next morning, Monday, April 12, 2010, I began the day’s to-do list with returning the cable modem and stopping the service for Mama and having that taken off my bill. Everything was still surreal, although I was going through the motions, taking care of the things I could before the first visit I could have with Mama at noon.

On the way back from the cable company, I turned on the radio and this song came on:

Immediately, my mind went back to when I was little and Mama had the radio on all the time and we heard this song in the mix of the music that was played. I thought of those carefree days and when Mama was healthy and then all the music and summer days we’d had since then played like a movie through my memory.

Then I got to the present and I was sobbing. Not only for the past, but for the reality of the knowledge that we’d never be able to go back there again. I was crying for what we’d lost for good.

That was the song I heard yesterday. It took me right back to being in that car face-to-face with a new reality for Mama and me, reminding me again of that trip down memory lane that I had taken (and which I took again yesterday). And unexpected tears streamed down my face again.

I’ve had a hard time listening to “Mama” songs since her death. For the most part, I’ve avoided them like the plague because they evoke such a strong emotional/memory response in me and my mind and my heart get consumed with a grief I can’t stop and I can’t contain.

I don’t know exactly why this song prompted and prompts such a strong emotional reaction in me. There are no concrete, specific memories, other than the one five years ago, attached to it.

There are many other songs that I do have concrete and specific memories of Mama and me attached to: U2’s “In God’s Country,” The Commodores’ “Easy,” and Kenny Rogers’ “Lucille” are among them.

Maybe “Chrystal Blue Persuasion” is just a demarcation song for me and that is why it is so powerful. It encapsulates a childhood I miss, a mom who was at the top of her game, and a world and a time I’ll never have in again in this life. Maybe that’s all it is. And maybe that’s enough.

My advice? Embrace the music. Embrace the memories. And embrace the tears.

Because that means you had – and have – love.

And that is most precious thing we take, not just through, but beyond, this journey we walk through with our loved ones.

 

 

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 15 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this last 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 last step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 15, which gives comprehensive information on how to walk the last step in the journey through dementias and Alzheimer’s Disease, which is the one that we’ll take alone without our loved ones: grief.

There is no right or wrong way to grieve. There is no time limit on grief. Grief is a process and the reality is that there will always be a hole in your heart when you lose a loved one.

Grief is also complex and complicated. We not only grieve for the loss of our loved ones, but we also grieve for all that intertwined their lives with ours because we recognize that part of our lives is over in this life.

And part of the grief process is sorting through those intertwined lives, the good, the bad, the ugly, as we reflect deeply on our time together.

Some people are able to stuff the hole of loss with busyness and lots of people and lots of things and it seems like they just picked up and moved on without blinking. They didn’t, but it looks that way.

Other people move through the process of scabbing the wound of the hole of loss more slowly, in spurts and stages that at times seem interminable and like they will never end. But it does and eventually, they find a way to move on as well.

You will find that the grieving process will tell you a lot about the people who are around you in your life.

And because death and grief necessitate one of life’s major reset phases, which includes a period of purging (not all on our part) – usually for the better, although it’s incredibly painful at the time – part of that reset phase extends to the people who are around us in our lives.

We find out who the people around us are and what we mean to them during this period.

And, although it may be sad and surprising, depending on our temperaments and personalities, many of those people will exit your life if you don’t meet their expectations and time limits on what acceptable grief looks like.

We have to accept that they were never there for the long haul to begin with.

A very small group of a few other people will hang in there with you every step of the way and beyond.

That’s your inner circle. Love them. Cherish them. And do the same and more for them as life happens to them. They’re not going anywhere. You’re not either.

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, Chapter 10, Chapter 11, Chapter 12, Chapter 13, Chapter 14, and, with this post, Chapter 15.

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 15: ‘I Have a Lock of Hair and One-Half of My Heart’”

“Death and its aftermath is the last step of this journey through dementias and Alzheimer’s Disease and it is a step that we take without our loved ones.

It is often said that in these neurological and fatal diseases that we experience death twice. The first death is the loss of the loved ones we knew before these diseases. The second death is when our loved ones take their last breath.

If hospice is on board, the first phone call we make is to them. A nurse will come out and confirm death. Hospice will also contact the funeral home and will prepare the body for transport. This includes cleaning and dressing (I actually helped our hospice nurse with this).

When the people from the funeral home get there, they will make an appointment to come in and make burial arrangements (usually the next day) and they will take the body to the funeral home and start the embalming process.

Once the funeral home people leave, the hospice nurse will collect and destroy any remaining medications and there will be paperwork to sign both to confirm the medication disposal and to end hospice services.

It’s a flurry of activity that lasts several hours, and I personally found that to be just what I needed because the reality that Mom was gone was still sinking in.

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 14 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this fifteenth 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 fourteenth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 14, which gives comprehensive information on how to acknowledge, recognize, and respond to the fourteenth step in the journey through dementias and Alzheimer’s Disease: the end of life and death.

As we near the end of the journey we’ve shared with our love ones, this is the last step we will take with them. This chapter talks comprehensively about how to do that with love, with gentleness, and with kindness.

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, Chapter 10, Chapter 11, Chapter 12, Chapter 13, and, with this post, Chapter 14.

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 14: ‘As the Final Curtain Falls Before My Eyes’”

This step is the next to the last step in the journey that our loved ones with dementias and Alzheimer’s Disease take. It can be a lengthy step of months or a short step of weeks or a shorter step of just a few days. Regardless of the amount of time, though, this step is harder, I believe, on us than it is on our loved ones.

This step is a two-process step: the body begins shutting down in the first process and active dying occurs in the second process.

One of the first signs that the body is beginning to shut down that we’ll see with our loved ones with dementias and Alzheimer’s Disease is that they will start sleeping a lot more.

This usually begins a few months before death occurs. Often, this is a pattern of an hour or two of wakefulness followed by naps and dozing on and off during the day, with fatigue setting in early in the evening and a full night’s sleep ensuing.

In short, our loved ones will be asleep more than they are awake.

Another sign may be a decreased desire for food and drink. It is important to not to try to force food and liquids on our loved ones with dementias and Alzheimer’s Disease if they don’t want them. As the body starts its elaborate shutdown process, there simply isn’t a need for much nourishment. Additionally, because our loved ones are not very active, they don’t burn a lot of calories nor do they need as much sustenance.

However, what is also likely to happen is that our loved ones will want or need nourishment at odd times of the day (not necessarily a normal meal time), and when they do, try to keep food and drinks healthy and light (easy to digest).

Often, during this time of shutting down, our loved ones with dementias and Alzheimer’s Disease will, when they are awake, both sort through their lives and work to make peace with anything in their pasts that they believe is left unsettled.

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 13 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this fourteenth 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 thirteenth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 13, which gives comprehensive information on how to acknowledge, recognize, and respond to the thirteenth step in the journey through dementias and Alzheimer’s Disease: ensuring that our loved ones always know that we love them and are committed to them all the way.

Although showing our love and commitment is something we do throughout our lives with our loved ones, this step is another conscious one that we need to practice as these neurological diseases progress and our loved ones seem to begin to disappear and we can bogged down as their care needs increase. There is never not enough time for love.

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, Chapter 10, Chapter 11, Chapter 12, and, with this post, Chapter 13.

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 13: ‘And Know They Love You’”

“At this step, and indeed throughout the entire journey of dementias and Alzheimer’s Disease, we must always make sure that our loved ones know the we love them, we care about them, and we are committed to them.

As our loved ones become more dependent on us and as they lose cognition and neurological function, they often become fearful. Their fears include being isolated, being abandoned, being a burden, and being in the way. For those who are still able to communicate at this step, much of their conversations with us will include these fears.

It is our job to allay those fears and remind our loved ones with dementias and Alzheimer’s Disease that we’re on their side and we’re not going anywhere. Spending a lot of time with them becomes more critical at this step as do what we do with our loved ones during that time together.

How can we demonstrate our love, our commitment, our care and our concern in tangible ways?

  1. Quality time

    One of the most reassuring things that we can do for our loved ones with dementias and Alzheimer’s Disease is to spend quality time with them. This is not just spending time, but it is time where our attention is completely dedicated to them.

    While quality time can include some sort of fun or interesting activities, more often than not, it is just being with them and listening to them, interacting with them, and giving them our undivided attention.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 12 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this thirteenth 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 twelfth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 12, which gives comprehensive information on how to acknowledge, recognize, and respond to the twelfth step in the journey through dementias and Alzheimer’s Disease: maintaining the dignity and as much independence as is safe for our loved ones as they become more dependent on us.

This is so critical – and, unfortunately, often overlooked or forgotten – that it must be recognized as a conscious step that we as caregivers must take and must always remember as we go through this journey with our loved ones.

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, Chapter 10, Chapter 11, and, with this post, Chapter 12.

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 12: ‘Help Me Live With Dignity ‘Til the End’”

“As our loved ones with dementias and Alzheimer’s Disease progress through their journeys, they reach this step where their dignity and their independence could be compromised. It is our job to ensure that we preserve their dignity to the end and ensure as much independence as is safe to the end.

Dignity is something that all human beings should have until they take their last breath. This includes respect and honor toward them, no matter what circumstances they may find themselves in. It is no different for our loved ones with dementias and Alzheimer’s Disease.

In addition to dignity, it is also important for us to ensure that our loved ones have as much independence – guaranteeing safety at all times – over their own bodies and their own care as they are able to handle.

It will take them longer and everything may not be perfect, but as long as our loved ones with dementias and Alzheimer’s Disease can participate in their care, their lives, and our lives safely, the more happy and satisfied they will be and the more dignity and honor we will be showing them.

What does this look like in practice?

  1. Incontinence and toileting

    When our loved ones reach this step, we may begin to have to help them with toileting. Generally, urinary incontinence is the first toileting issue we encounter. This may be due more to age and medication than the actual loss of urinary continence, so our loved ones will likely know they need to urinate, but just not be able to make it in time.

    We want the transition to adult incontinence clothing to be as easy and stigma-free for them as possible, so we should treat the clothing, accidents, and any other issues we encounter with no fuss and calmly and normally.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 11 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this twelfth 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 eleventh step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 11, which gives comprehensive information on how to acknowledge, recognize, and respond to the eleventh step in the journey through dementias and Alzheimer’s Disease: medical care and medical advocacy.

This chapter discusses the importance of having legal documents in place early that designate power of attorney, medical wishes, and end of life care as well as the role we have in advocating for our loved ones’ medical needs and wishes and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we travel 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, Chapter 10, and, with this post, Chapter 11.

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 11: ‘I’m Just a Little Unwell”

“As our loved ones progress through dementias and Alzheimer’s Disease, medical care will become a more central and ever-present part of the journey. It’s important that we understand this and are prepared in every way possible to become team leaders and advocates for our loved ones to ensure that they receive the right care, the best care, and, as much as they are able, are actively involved in medical discussions, decisions, and care.

At this step of the journey, it is too late to determine finite boundaries of care and to create legal documents designating powers of attorney, living wills, and Do Not Resuscitate (DNR) orders because our loved ones are not considered competent to make these kinds of decisions.

So it is imperative that these decisions and documents are discussed, if not well in advance of the initial signs of dementias and Alzheimer’s Disease, at least in the earliest stages, when our loved ones can decide what they want and convey and formalize those wishes.

In fact, we all should do this, no matter where we are in life. We should have wills, living wills, DNR’s (if that’s what we want). We should talk to the people that we designated to ensure our wishes are fulfilled and let them know that they are responsible and what we want and don’t want.

In addition, someone should have all our financial, insurance, and digital (online access to bank accounts, email accounts passwords, revenue accounts like Amazon and eBay, etc., blogs access are a few examples) information.

It’s important to understand that this does not mean they have or need access to our money or our stuff. Generally this person is going to be the power of attorney for our healthcare and finances (there are legal documents to create and designate these) anyway, and we are the ones who determine when control of our stuff gets turned over to them.

Therefore, it’s important to pick someone we trust and it’s important to review those documents from time to time to ensure that all the information is updated. People get divorced. People die. We add and we drop banks, policies, jobs all the times. Make sure your legal documents reflect all of these.”

“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.”