Tag Archive | End of Life

“Being Mortal” by Dr. Atul Gawande: Book Review and Recommendation

Aug6

Being Mortal Book ReviewAfter watching PBS’s Frontline program “Being Mortal” with Dr. Atul Gawande, I knew I wanted to read this book with the same name.

It didn’t disappoint. Having intimately walked through aging and the end of life with both of my parents up close and personally, I could nod my head at much of what Dr. Gawande said about life and medicine as it exists today and how it should be instead. Surprisingly, I found some comfort in knowing that my parents and I – although many times it seemed like a David and Goliath battle – together took the right and the best approach toward both.

Everybody should read this book. It highlights one of my mantras about living: quantity doesn’t equal quality and in the end, if there’s no quality, there’s no life.

We Americans especially are on this eternal quest to cheat aging (and spend who knows how much money on one gimmick after another to try to sidestep it or avoid it altogether), so we ignore the inevitable fact that this body is temporary and it starts failing us gradually and slowly from the day we are born.

And because we ignore the aging process, we do not plan and are not prepared – nor, for the most part, is society – for the changes that need to be made, while preserving independence, vitality, and purpose, when we reach the point of physical breakdown where we need help.

We Americans also have been so removed from the process of dying that we literally treat death as an abnormality instead of the expected and intended end of all humans.

Medicine has accommodated this and public policy and insurance companies have thrown their support behind this quest for “a little more time.” What buying a little more time has cost us is a lot of money, more harm than good (the cure is often far worse than the disease), and the loss of quality of life.

Dr. Gawande refocuses aging and end of life through a difference lens. He poses the questions most people, including medical professionals, don’t want to ask, but should ask. And we should answer.

Some of us will die suddenly – the reality is that no death is unexpected, because that’s the end game for all of us. Even if we die suddenly though, there are many things we need to have in place to make our deaths as easy on whoever will be taking care of our affairs afterwards as possible.

If we die suddenly then we may be too young to have to plan for aging well. But many of us will live long enough to come face to face with the aging process. Without a plan, all bets are off.

If we want control over how our lives go when we age to the point where we need help and we want control over how our final years, months, weeks, days on this earth unfold in terms of what’s most important to us (family, friends, faith, being at home, etc.), then today is the day to start thinking about it, plan for it, and make our decisions known to everyone who needs to know.

United States Hospice Agency Report Card 2015

Jan9

In “The Layperson’s Guide to Hospice Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” I gave a comprehensive discussion about how to choose and what to look for in hospice agencies when the time comes that our loved hospice report card united states 2015ones with dementias and Alzheimer’s Disease need comfort care and gentle and compassionate assistance with the dying process.

The Huffington Post, on January 8, 2015, had this article, which includes interactive maps for each state in the United States where state inspection data was available, giving detailed report card information for American hospice agencies. 

“Here Are the Hospices That Break the Most Rules” is a must-read.

“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.“

Steps On The Path – From “Momma and Me Our Journey Through Lewy Body Dementia” blog

Aug20

As I read this post tonight on Momma and Me Our Journey through Lewy Body Dementia, tears filled my eyes as I remembered a similar moment with my mom a week before she died.

Mom didn’t know who I was most of that last week, but she knew I was someone she could trust. At least after she cried out to God as I put her into bed the Monday of the week before she died and said the words that cut me to the very inner recesses of my heart: “Oh, God, she’s trying to kill me!”

Mom’s mobility was so limited after the major heart attack she suffered on August 2, 2012, that it took all my strength and effort for everything that required movement for her and with her. I was as gentle as I could be with her, and, in some ways, sacrificed my own body, to ensure that Mom was okay, safe, and not taxed any more physically than was necessary. Mom was worth it.

Azheimer's Disease Dementia Steps and Stairs Toward The EndEarly in the morning the Tuesday a week before Mom died, she was in the hospital bed I’d had delivered on Monday and I was in the recliner where she’d slept since we’d come home from visiting my twin sister in May (sleeping in a reclining position eased what I now realized were chest pains from her congestive heart failure).

I was in my usual half-awake/half-asleep nightly ritual when a severe leg cramp forced me out of the chair and onto my feet. As I stood up, I saw that Mom was awake, but the leg cramp was so bad, I knew I had to deal with it first before I could deal with her.

I have an old ankle injury (from a serious car accident when I was in college in which my foot got wrapped around the brake) in the leg that was cramping – which is also the leg that I’ve had three reconstructive, repair, and replacement surgeries on my knee – so I’ve learned over the years that I have to be careful not to pop the ankle when I’m trying to walk out leg cramps in that leg.

Walking wasn’t helping, so I sat in a chair and tried to massage the cramp out. It took about 15 minutes, but I was finally able to stop the cramping enough to go to Mom.

I walked over to Mom and took her into my arms and leaned down to talk into her good ear and ask if she was okay. She took me in her arms and held me close to her, returning my embrace fully, and said “I know I’m not going to get out of here, but you can, so as soon as you get well, promise me you’ll leave.”

I promised Mom that I would and we held each other, for me, as mother and daughter, tightly for several minutes. I kissed Mom and told her I loved her always and unconditionally, and she pulled me closer and squeezed me tighter to her chest and then fell asleep.

Other than Mom’s rally the following Saturday, this is one of the most precious memories I have of my last days with Mom. Even if she didn’t know who I was in a conscious way, somewhere deep inside she knew. She remembered. She loved me. She was looking out for me.

In Alzheimer’s Disease and dementia, there’s not a lot left for us to take away as the diseases destroy our connections to our loved ones. I’m thankful for each one that I have, no matter how thin, how temporary, how distant. Because I know behind each of those is my mom and our bond.

It promises me that some things can’t be broken. Ever. For that I’m grateful and thankful.