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

Jan4

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

Jan2

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

Jan1

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

Dec31

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

Dec30

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

Dec29

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 9 Excerpt

Dec28

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

This post includes an excerpt from chapter 9, which gives extensive information on how to acknowledge, recognize, and respond to the ninth step in the journey through dementias and Alzheimer’s Disease: balance, stability, and falls.

This chapter discusses all of the reasons that the neurological damage of these diseases affect balance, stability, and lead to an marked increase in fall risks and actual falls.

This is the ninth step in the journey through dementias and Alzheimer’s disease.

This chapter also discusses 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, and, with this post, Chapter 9.

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 9: ‘I Keep on Fallin’”

“While many of our loved ones with dementias and Alzheimer’s Disease are in good shape physically when these diseases begin to manifest themselves, they eventually reach this step of the journey where there is a great risk of falling. Attached to this risk is the possibility of broken bones – especially hips, which may be so badly damaged that our loved ones become confined to wheelchairs or bed for the rest of their lives – and head injuries, which can be fatal.

The reasons that our loved ones are increasingly susceptible to falls are:

  1. Gait changes

    Gait changes are common as dementias and Alzheimer’s Disease progress in our loved ones. One of the most characteristic gait changes is shuffling. This is especially pronounced in our loved ones who have Lewy Body dementia and Parkinson’s Disease, but it becomes a feature of all dementias and Alzheimer’s Disease by this step of the journey.

    Shuffling is when our loved ones don’t pick their feet up off the floor to take steps, but instead slide them across the floor to move forward. One of the inherent dangers in this is catching the front part of shoes on the floor – especially carpet – and falling forward.

    Shuffling can be both a result of neurological impairment – not remembering how to take normal steps to walk – and muscle weakness from lack of use.

    The most important thing we can do for our loved ones with dementias and Alzheimer’s Disease to help minimize shuffling is to have a physical therapist on our care teams to help regain muscle strength and work on gait normalization. Additionally, if possible, we should be helping our loved ones maintain muscle strength and walk with them daily encouraging them, both by example and by instruction, to use a normal stepping gait to walk.”

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

Dec26

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.“

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 7 Excerpt

Dec25

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

This post includes an excerpt from chapter 7, which provides a comprehensive look at how to acknowledge, recognize, and respond to the seventh step in the journey through dementias and Alzheimer’s Disease: sleep changes and disruptions.

This chapter shows that changes to sleep patterns and sleep disturbances, which includes sundowning, are all part of the seventh step in the journey through dementias and Alzheimer’s disease.

This chapter also discusses how this step impacts our loved ones and us as caregivers and the practical, real-time, and loving ways we as caregivers should respond and help our loved ones walk 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, and, with this post, Chapter 7.

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 7: ‘Don’t Know If It’s Day Or Night’”

“Changes and disruptions in sleep are the next step in the journey our loved ones go through with dementias and Azheimer’s Disease. Included in this step is a phenomenon called sundowning, which we’ll explain the logic and science behind.

But first we need to talk about the science of sleep. All humans have a 24-hour internal clock that is known as our circadian clock (the term circadian rhythm refers to any biological process that completes a 24-hour cycle).

This clock, shown below, is a complex and coordinated system of neurology, hormones, environmental factors, and routines that are established from the time we are born.

circadian rhythm sundowning melatonin going gentle into that good night

Everyone’s circadian clock is unique, but each follows the general pattern shown above. In fact, the clock shown above is the ideal and the circadian clock that humans basically followed until the Industrial Revolution took place in the late 18th and early 19th centuries.

Since the full transition into the Industrial Revolution, human life and the adherence to this natural circadian clock has been altered and challenged because one of the side-effects of the Industrial Revolution was the development of artificial lighting (gas in the 19th century and electricity in the 20th century), which enabled lighting to be available 24 hours a day.

This was the byproduct of greed that served the captains of industry well (instead of limiting work hours to daylight hours only, artificial lighting enabled factories, foundries, mining operations, etc. to operate on a 24/7 schedule), but the human race definitely got the short end of the stick here.

Because the body is designed genetically, neurologically, hormonally, and environmentally to function in sync with the 24-hour circadian clock shown above, disrupted sleep and sleep deprivation has a chaotic effect on the body, even in otherwise-healthy people.

Time and again, science and medicine have shown a significant increase in accidents and serious injuries among shift workers who work at night. This includes not only production workers, but also professionals such as medical personnel. There is also a considerable amount of evidence that shows night shift workers are much likely to be injured or killed in driving accidents because they have a higher incidence of falling asleep behind the wheel going to and from work.

The most disruptive shift to the human body is the graveyard shift (usually 11 pm to 7 am). By the time these workers start their shift, the body is fully prepared (the hormone melatonin relaxes the body and mind for sleep beginning around 9 pm) to sleep. Forcing the body to do the complete opposite of what is it naturally designed to do is often counterproductive and very destructive to human health.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 6 Excerpt

Dec24

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

This post includes an excerpt from chapter 6, which provides a extensive look at how to acknowledge, recognize, and respond to the sixth step in the journey through dementias and Alzheimer’s Disease: sudden and dramatic mood swings in both directions.

This chapter shows that frequent, unexpected, and severe mood mood swings are the sixth step in the journey through dementias and Alzheimer’s disease. This chapter discusses how this step impacts our loved ones and us as caregivers. It also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones traverse 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, and, with this post, Chapter 6.

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 6: ‘How You Suffered for Your Sanity’”

“Dramatic and sudden mood swings are part and parcel of the journey through dementias and Alzheimer’s Disease, and they begin to materialize during the step of paranoia, but they can continue throughout the course of these diseases.

There can be several triggers for these mood swings: environmental, physiological, perceptual, and neurological. Sometimes all of these can be in play at the same time, but normally the trigger is singular.

Let’s take a look at each of the areas that can trigger a mood swing in our loved ones suffering with dementias and Alzheimer’s Disease and how we can respond to and/or eliminate them.

  1. Environmental changes are often the trigger for sudden and dramatic mood swings. These can include something as seemingly simple as moving something out of a familiar place or having our loved ones in a setting they are not familiar with. It can also include the presence of strangers (or people they don’t remember) and it can include being asked to do something new or unfamiliar.

    For example, one of the most common instances of these kinds of mood swings is with medical personnel. Most nurses, nurse practitioner, physician’s assistants, and doctors have stories about routine care they were providing for a patient with dementias and Alzheimer’s Disease that quickly deteriorated into yelling, screaming, aggression, and sometimes even physical assault.”