This post includes an excerpt from chapter 2, which comprehensively discusses the step where our loved ones with dementia and Alzheimer’s are aware that something’s wrong neurologically, but they don’t know what and the internal and external conflicts that presents for them and us.
Excerpt “Chapter 2: ‘There’s Someone in My Head, But It’s Not Me'”
“In this stage of dementias and Alzheimer’s Disease, where mild cognitive impairment is more obvious, but the extensive neurological damage characterized by the later steps in these diseases has not yet occurred, most of the time our loved ones will function fairly normally and will be lucid.
However, they have an, sometimes quite acute, awareness of their own mental slippage and that something is not quite right. In other words, they are aware they can’t remember things, they are losing things, they are having trouble following directions, and they can’t seem to hold on to new information for any length of time.”
This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).
The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.
That was intentional on my part for two reasons.
One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.
The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.
And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.
Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.
But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.
And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.
That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.
It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.
Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”
“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.
What does this look like in practical terms?
Repeating things in conversations, stories, and writing
This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.
Frequently losing and misplacing things
We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”
Caring for a loved one with dementias and Alzheimer’s Disease changes us. This, I believe, is one of the most unrecognized aspects of going through the journey of these diseases with loved ones.
I know with my mom, who had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease as well as suffering from congestive heart failure, I changed throughout the course of our journey together, perhaps as much or more, in different ways, as she did.
And now that she’s gone, it’s difficult for me to imagine that person that I was before all this started. That person in that configuration is gone. In some ways, that’s good, because that previous iteration of me had some flaws that needed mending, ideas that needed changing, and attitudes that needed correction.
In other ways, though, it’s challenging. Caregiving is a 24/7 job, especially as the diseases progress and the changes become more rapid and more intense, requiring every bit of time, effort, and diligence on our parts to ensure our loved ones are safe and comfortable.
Because of the nature of dementias and Alzheimer’s Disease, this is a long, extended high-alert, always-alert, always-ready position for caregivers. It becomes who we are and it reflects the tenor of our lives.
And then one day, it suddenly stops. Adjusting to that abrupt and radical change is, in my opinion, of all the things caregivers do in the course of taking care of loved ones, the hardest part.
I think of it as being in a car going from 120 mph to a dead stop within the time it takes to snap your finger. In some ways, it’s like the aftermath of a high-impact car crash that you walk away from.
I have learned, though, that unless you’ve walked in the shoes of caregiving day in and day out for someone you love with dementias and/or Alzheimer’s Disease, it’s very hard to relate to what the now-defunct caregiver is going through in this post-caregiving phase. It’s not that other people don’t want to understand. It’s just that they can’t really if they haven’t been through it.
There is a tremendous sense of being lost. Because loving caregiving requires such a high investment all the way around, when that ends, there’s a sense of purpose, usefulness, and worth that ends with it.
There’s a sense of wandering around aimlessly while the rest of the world around you is going on as it always has. There is a sense of not belonging anywhere, to any time, or any place. It seems like no matter what you do after that, it’s meaningless, compared to what you were able to give your loved one.
My guess is that will be something we carry somewhere inside us the rest of our lives. It’s just part of the change.
Another change will be that you’re more observant and helpful, especially around elderly folks. Not long ago, I volunteered to help during a cookout at a rehabilitation hospital. One of the things I was doing was helping people to the tables, some of which were on concrete and some of which were on grass.
There was an elderly woman with a walker who clearly had balance issues, and although there were staff members around, no one seemed to realize that as she was walking on the sidewalk toward a table in the grass, she was precariously close to the curb and all it would have taken is just a second for her to have lost her balance, fallen and hurt herself. Visions of Mom flashed in my brain and I ran over to help make sure she got where she was going safely.
Greater compassion toward and protectiveness of those who are vulnerable, as our loved ones suffering from dementias and Alzheimer’s Disease are, will be another change that occurs.
A friend of mine who works as a beautician in a senior care facility wrote on Facebook the other day about getting cursed out by an 88-year-old woman who didn’t want the shampoo rinsed out of her hair.
Almost immediately, the insensitive and disrespectful comments started. One person said that she would have sprayed the elderly lady in the face if she had cursed at her.
I got very angry. That could have been my mama they were talking about. I sent a private message to my friend explaining that the lady probably had some form of dementia and/or Alzheimer’s Disease and didn’t even know what she was doing and would have probably, given her age, never done that in her right mind.
And the biggest change will be that your life will never be the same. You will never look at anything the way you looked at it before you embarked on the caregiving journey with your loved one. At a core level, you’ve changed.
And your biggest challenge will be figuring out what to do with that to go forward, to make the experience count, not just for your loved one, but everyone else, in whatever small way you can, that your life intersects with until the day that you draw your last breath.
And you’ll find it’s a very solitary, lonely journey. But like all the journeys you’ve been on up until now, it’s a necessary one. It will take a lot of patience and gentleness with yourself. It will take time. Most of it will be arduous.
But the most important thing I can pass on to you is not to quit and keep putting one foot in front of the other, even if for long stretches it seems you’re walking in place. Sooner or later, as long as you’re moving, eventually it will be in forward motion.