Click below on the new infographic I created to see it in normal size.
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.
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.
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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In 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:
- The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
- The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
- 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.
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?
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.”
I’ve just written and published my newest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
I’ll include the short summary from Amazon I wrote for the book:
In my own experience with this and in counseling, supporting, and working with others who are going through these steps, I realized there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
I know that because the same questions get asked and answered over and over again.
My purpose is to ask those questions and answer them in a way that, first, makes sense, and, second, works for everybody involved.
I know. I’ve been on the caregiving side of the equation personally. There were no books like this when I did it, so I had to learn on my own and figure out what worked and what didn’t. I made mistakes. You’ll make mistakes.
But, in the end, my mom and whoever you love and are caring for, got the best we have to give and we can learn some pretty incredible and good life lessons along the way.
If you don’t read another book on this subject, you should read this one. I don’t have all the answers, but the answers I have learned are the ones that probably matter most.
Not just now, but for the rest of our lives.”
This book also includes the last step that we take alone without our loved ones: grief. I’ve been there and I’ve done that and although I will never not feel the grief on some level, I’ve learned some lessons that I know will help each of you.