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The Steps Our Loved Ones Take in the Journey Through Dementias and Alzheimer’s Disease

Click below on the new infographic I created to see it in normal size.

dementia steps going gentle into that good night

Do You Know And Have You Prepared What You Need To Ensure That You And Your Affairs Will Be Well-Taken Care Of When You Need Help?

financial legal medical documents power of attorney going gentle into that good nightEvery few months, I write a post on the immediate need for everyone – no matter what their age, their health, or their life circumstances – to know and understand the vital information that needs to documented (and executed in terms of legal documents) and communicated to their designee when they are unable, either temporarily or permanently, to take care of their own affairs.

This includes digital access (email accounts, online bank accounts, retail accounts, etc.) documentation as well as legal, medical, and financial documents everyone needs to have in place when we need help or can’t take care of our own affairs in this area.

I am extremely puzzled by the fact those most people put this off and avoid thinking about it or doing it. It’s illogical and it is really cruel to those whose laps it ends up in.

I can’t tell you how many stories I’ve heard about a family member – especially parents of grown children – being incapacitated with life and death in the balance and because nobody ever talked about this contingency and no documents – living wills and/or DNRs – exist, there’s no clear decision-maker and the ability to let go (taking off life support when there’s no chance of recovery) is long, hard, and gut-wrenching on the family.

And the one who didn’t take the time to spell out their wishes suffers terribly and needlessly, not to get better, but essentially just to run up a meaningless huge debt that will decimate their estate and perhaps ruin the financial health of those they leave behind. 

None of is guaranteed our next breath, a healthy life with no life-changing accidents and diseases, nor a healthy mind for as long as we live. Things could literally change 180% for any of us and our families and loved ones while we’re reading this sentence. Yet, of all the things it seems that we humans deceive ourselves about, this seems to be the top “It won’t happen to me.”

But the reality is that it will.

If not sooner, then later.

And the most selfish and irresponsible thing that we can do to our families and our loved ones is to not be prepared ourselves and to not ensure that we have designated and prepared the decision-makers we choose in advance.

This is one of the greatest acts of love and one of the biggest blessings we can do for and give to those closest to us and whom we love the most.

to be prepared is half the victoryAll of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

With the precipitous rise in dementias overall, which may be in part related to a more toxic planet, more toxic water, and more toxic food, and the burgeoning number of lifestyle-related dementias that are emerging, the odds are not in our favor that every single one of us, in time, will not suffer from some sort of neurological degeneration. 

Who is going to help us when this happens?

And even if you or I are the exception to the rule, we’re still going to die. Everybody dies.

You can ignore it, you can deny it, you can live in some fantasy world where you refuse to think about it ever, but it doesn’t change the reality that it will happen to you and me.

I believe most of us assume that death will be quick and instantaneously, but the reality is that, in all likelihood, most of us will probably have a period of decline in which we will need help handling our financial, legal, and medical affairs before we take our last breaths.

And, after we take our last breaths, someone will have to take care of getting us buried and ending our financial, legal, and medical status among the living.

Who would that be for you? Yes, you, the one who is reading this post. Do you know? Does that person know? If that person knows, have you made this as easy as possible for him or her by doing your part and making sure he or she has everything he or she needs to do what needs to be done?

Or, because you don’t want to think about it or talk about, will that person have the burdensome responsibility of trying to figure it out all on his or her own?

We say we don’t want to be burdens to our loved ones. By taking care of this, you and I – we – have taken a big step toward easing the magnitude of that burden that, if we live long enough, will be shouldered by our loved ones.

I did my first will and living will shortly after I turned 21. I review and update, if necessary, both of those when my circumstances change or 12 months have passed. I have a signed and notarized DNR.

I have complete documentation on my digital footprint, as well as other financial, medical, insurance, property, and notification (for death) documentation that I keep updated as well.

I have detailed instructions regarding my funeral service and my burial.

Do you?

If not, why not?

What are you going to do about?

When are you going to do something about it?

What if tomorrow never comes?

Coping strategies with Alzheimer’s that invokes the feelings of guilt.

This is an excellent post…many of the things that I talk about in with regard to how we as caregivers respond to our loved ones in You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease are beautifully and eloquently stated here by someone who has Alzheimer’s Disease.

You know, for me, one of the greatest blessings in my life was the opportunity to be the caregiver for my mom. I got frustrated, at times, before I realized what was wrong, but the frustration was not with my mom, but with me because I didn’t know how to make things better for her.

But I didn’t take that frustration out on my mom. Instead, it provoked me to be even more protective, more gentle, more kind, more caring, and more loving toward her. Intuitively, I knew she was scared and because I knew how fear manifested itself with her, I did my best to make sure that she knew that she was safe and comfortable and that I would never leave her.

I also made sure that her dignity and independence (one of the chapters I cover in-depth in this book) were kept intact (independence was only modified when safety was an issue, but even then I was very careful to let Mom have as much as she could handle) to the end of her life.

The way I looked at caregiving was that I was fulfilling the circle of life for my mom. She did the same things for me when I could do nothing for myself, when I was helpless, completely dependent, kept her up all hours of the night, and was finicky and fussy. She didn’t leave me. She didn’t complain. She didn’t walk away. She did everything she could to show me love, care, and comfort.

And that she deserved from me when the time came that the roles were reversed.

Gill's avatarHandbagwarrior; verbal ramblings

There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.FUNNY-FUN-FUN.COM

One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.

This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.

At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really…

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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

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.”

“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.