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Mother’s Day 2014

mama mother's dayToday is the second Mother’s Day since Mama’s death. Grief still lingers and hovers over me, punctuated even more by packing up for the impending sale of my house and subsequent move.

Because packing has brought the inevitable sifting and sorting, which entails opening boxes, containers, and drawers that have sat unopened for a while. And I’ve come across a lot of memories in the process and the tears that they are just memories now have fallen quite frequently.

While some who read this blog knew my mama, most of you don’t. So in honor of Mother’s Day 2014, I would like to briefly introduce you to this wonderful and beautiful lady that I’m honored to have known as “Mama.”

Mama was one of the most intelligent people I’ve ever known. Though beset by a hearing loss – that worsened with time – all her life, she was an excellent student and she loved learning.

Although Mama had completed medical technology training shortly after she and Daddy married, she yearned to go back to college and get more education. At 48, she did just that, ending up with a bachelors of science degree in biology and a bachelor of arts  degree in English. Her cumulative GPA was 3.5, despite the fact that she struggled through two required, but dreaded, math courses. We – she and I – worked together and got her through both of them with a C.

Almost right up until the time of her triple-dementia – vascular dementia, Lewy Body dementia, and Alzheimer’s Disease – diagnosis, Mama was taking classes of some kind. Her last formal classes were sign language classes, which Mama persuaded me to join so that we could learn and practice together.

Mama was also a voracious reader. When Mama was in elementary school, she’d spend every Saturday at the public library in Greenville, SC where she made the pronouncement to the librarians there that she was going to “read every book in the world.” They laughed, but Mama never gave up on that unattainable goal.

Mama, in spite of all the odds against her, was, as an adult, hopeful and optimistic about life. She enjoyed life and made the most of her time on this earth.

Mama had a whole lot of love and she generously poured it out on everybody who intersected with her life and who responded to it. I’m not sure Mama ever met a stranger; of the five of us, she was, even more so than Daddy, the most likely to introduce herself to someone and make them feel welcome in any setting.

Mama cared very deeply about humanity and often cried tears for the most vulnerable among us – children and the elderly – when she learned of hurts, sorrows, and oppressions that had befallen them.

Mama also loved all the four-legged friends that accompanied her and us as a family throughout her lifetime. She also cried tears for them when it was time for her and us to say goodbye to them.

Mama was the enthusiastic cheerleader in our family. Whenever any of us expressed a desire to do or try something, Mama was right behind us encouraging us to go for it, assuring us that she’d be with us all the way.

Sometimes if we were too reluctant or refused to do something and Mama believed it was something we needed to do, she’d give us an “or else” ultimatum. My only jump ever, tear-laden though it was, off a diving board into the deep end of a swimming pool when I was 9 was the result of one of Mama’s ultimatums. 🙂

mama-entertaining-bday-2003Mama had a fantastic sense of humor that always had the edge of mischief around it. She laughed easily and often and her blue eyes sparkled with joy most of the time, although dementias and Alzheimer’s Disease took more than their fair share of that away as they progressed.

Mama was always up for adventures with her family and her friends. When she and I were both in college at the same time, we arranged our schedules so that our Tuesday and Thursday classes were done by noon.

At least once a week, we’d go to lunch together, then go to Baskin-Robbin’s and get three-scoop sundaes to take to the movie theater to eat while we caught the afternoon matinee of whatever new movie was out.

On days we didn’t go to the movies, we’d either spend the afternoon walking and talking out at Wrightsville Beach (North Carolina) or Fort Fisher or in downtown Wilmington or we would go bowling or go to shoot pool (Mama never quite mastered the technique of shooting pool, but she was a pretty decent bowler back in the day).

I cannot tell you how much I treasure those memories, nor how much I miss those times. When we traveled together in subsequent years, we’d always spend a lot of time exploring together, until the last few years, when Mama’s energy and heart was winding down and she simply couldn’t manage long exploratory walks and strolls.

It broke my heart when it happened. I guess I believed she’d be enthusiastically keeping pace with me, taking two steps to every one of mine (her legs were shorter), until the day she died.

Mama was also a talented writer and storyteller. One of the memories I’ve encountered as I’ve been packing is the reminder of how much she wrote over the years of her life. 

One of those pieces of writing reminded me, though, that Mama experienced a lot of grief during her life, including the worst grief, I believe, of her life after Daddy’s death in October 1998.

She wrote these words six months after Daddy had died:

“This is the eve of the sixth month since my husband’s death. I have come a long way since that fatal day in October. I need to pause and take stock of where I’ve been and what I’ve learned since that time…

…At first the pain of my loss was indescribable and unrelenting. I was locked into my grief, unable to think or act on anything. When everyone [us kids] returned to their daily routine, I was in an abyss of hopelessness. The pain had even paralyzed my tear ducts…

…While sharing activities with others or hearing some interesting information, I could hardly wait to tell my husband and had the shock of realizing that would never again happen. When writing, I kept expecting him to knock on the office door and I’d look up and see that crooked grin and hear him say: ‘Just checking on you.’

I found myself talking to him about my problems and asking him how I’d ever solve them without him. I’d fuss at him for keeping every key he had ever possessed and I had no idea what they fit. Or I’d rage at him for saving every rubber band, paper clip, and ad infinitum.

I’d tell him he was right, I was the messiest person alive and I had to change, but I’d show him that I could. At night, I’d reach over to touch him, but only felt his robe that I left on his pillow. Those were the times the flood gates opened.”

Reading Mama’s words about her grief after Daddy’s death reminded me both of my grief after he died and my grief since her death. Somehow Mama’s words reflected much of what I’ve experienced since her death. It’s not in my face all the time, but it still hits me like a ton of bricks out of the blue more often than not.

mama-bday-2003I miss you, Mama, just like I miss Daddy. I’m a little lost at times with both of you gone and I’m often struggling with the idea of being all alone in the world, humanly-speaking.

This Mother’s Day will be bittersweet like last year’s was and all the ones in the future will be until I see you again. For you now, it is just the blink of an eye. For me, it’s a little bit longer than that.

I love you, Mama! Until we see other again, sleep well.

Going Gentle Into That Good Night – The Book is a finalist in the SeniorHomes.com Best Senior Living Awards 2014

Thank all of you who have voted so far for my book, Going Gentle Into That Good Night BookI wanted to pass what I learned on, so I wrote Going Gentle Into That Good Night .

It’s a finalist in the SeniorHomes.com Best Senior Living Awards 2014 books categories.

A panel of judges will determine the SeniorHomes.com expert winner, but your votes will determine the People’s Choice winner. Voting is open until May 12, 2014. So, if you haven’t had a chance to vote yet, I’d certainly appreciate you doing some research into my book and giving me a vote if you think it’s a good offering in this category.

Going Gentle Into That Good Night – the book – is a finalist in the SeniorHomes.com Best Senior Living Awards 2014.

Going Gentle Into That Good Night – the blog is a finalist in the SeniorHomes.com Best Senior Living Awards 2014

And my blog – “Going Gentle Into That Good Night” (http://goinggentleintothatgoodnight.com) – is a finalist too. 

Once again, I thank everyone who has voted and ask anyone on my friends’ list who hasn’t to at least take a look at the blog (http://goinggentleintothatgoodnight.com).

Even if you don’t need this information personally, someone you know – a friend, a family member, or a colleague – needs it.

Everyone – and that includes all of us – even if not right here, right now, will be touched personally by the issues of dementias, Alzheimer’s Disease, and caregiving.

I have been through it personally. This blog is not an academic exercise. 

It is not, like a lot of the dementias and Alzheimer’s Disease blogs that post incessantly on a daily basis, an impersonal web bot scouring of the internet for things that might be related.It is not the sanitized and sterile posts that you’ll find on the “official” dementias and Alzheimer’s Disease web sites.

Instead, you’ll find real-world, understandable, and practical information AND solutions about these diseases. I talk about topics that no one else talks about – do a search on “lifestyle dementia” on my blog and you find information you need even if dementia and Alzheimer’s Disease has never entered into nor been a part of your personal experience – because I want to make sure everyone is educated about the many factors that can and are leading to this burgeoning neurological epidemic.

Going Gentle Into That Good Night is a finalist in the SeniorHomes.com Best Senior Living Awards 2014
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New Book: “You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease”

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.

It is available in both paperback and Kindle versions.

I’ll include the short summary from Amazon I wrote for the book:

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's Disease“This book looks comprehensively at all the steps that occur in dementias and Alzheimer’s Disease.

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.

If You Needed Help, Does Anyone Have What They Need From You to Step Up to the Plate?

Kay Bransford and I seem to be on the same page a lot these days, but I see that we seem to be the only ones willing to tackle these subjects, so I guess we will keep sounding the drums that all 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.

It seems to me that the very thing we try most to avoid thinking about, talking about, planning for is the very thing that will eventually happen to us all. And that is death.

Denial is, in my opinion, stronger and more pervasive in this area of life than in any other. “If I don’t think about it, then it isn’t real” seems to be the underlying thinking of this denial. I’m here to tell you that all the denial in the world won’t take away its inevitability of happening.

None of us, except those who chose to usurp God’s will and end their own lives, know how or when we’re going to die.

I believe most of us assume it 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 had just graduated from college, but not before having a very serious car accident (one that I miraculously survived with some significant injuries, but nothing like what I should have suffered) just before I graduated.

I’d never been that close to being face-to-face with death before, but it made me realize that I needed to make sure that my affairs – and they were paltry in those days but even then I had life insurance – were in order for the ones I’d leave behind.

From that point on, I have been meticulous about keeping my will up-to-date, the beneficiaries on my insurance policies up-to-date, and all the information my executor will need to take care of things up-to-date. I added a DNR to my medical wishes about 20 years ago, I got my cemetery plot 15 years ago, and I wrote out my funeral service and burial wishes about 10 years ago. 

Additionally, my executor has updated access and account information to everything online and offline to finish up my earthly affairs when I’m gone.

preparation-death-alzheimer's-disease-dementias-age-related-illnessesThis, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.

Mama used to worry that something would happen to me (i.e., that I would die before she did) and then about what would happen to her. There were times in our lives together that could have been a possibility, but I always reassured her that I’d be there with her to the end. And I was by the grace of God.

Of my parents, Daddy was a paradox when it came to this subject. On the one hand, he had life insurance that would take care of Mama after his death and he insisted, in the year before his death, that Mama get her own checking and savings accounts and get credit cards in her name only.

On the other hand, there were other areas in which he had great difficulty facing his mortality. I remember Mama suggesting that they start getting rid of clothes and other things they weren’t wearing or using anymore and Daddy’s response: “the girls can take care of that.”

The will that Daddy had in effect, until shortly before his death, was the one that he had drawn up just after he and Mama adopted us. None of the information was pertinent or relevant anymore.

After much and extended (I’m talking a couple of years) discussion between Mama and him, they finally went to a lawyer, about six weeks before he died, to have a current will drawn up.

Mama was just the opposite. Somehow, I think all the deaths of close and beloved relatives in her early years made the inevitability of death more real to her. She, primarily, during our growing up years, talked on a regular basis about what would happen to us if she and Daddy died and how we needed to take care of each other and be good kids so the road without them would be easier for us.

Not long after Daddy died, she and I sat down together (I was now checking in daily and helping her navigate through some of the things that Daddy had done and offering advice and assistance as she needed it) and she told me what she wanted – and didn’t want – as far as end-of-life wishes.

We went to an attorney together and she did a will (which she later changed to a revocable living trust), living will, and all the POA paperwork. I had copies, she had copies, and she put copies in a safety deposit box at the bank.

At that time, I didn’t need or want knowledge or access to her financial accounts, but as time went on, she needed more of my help in dealing with them, so she gave me access to get into the accounts and help her (we always sat down and did this together until she wasn’t able to anymore) keep up with bills and what she had. 

By doing this with me, Mama made things much easier for me when the time came that I had to step in because she couldn’t do it.

I can’t thank Mama enough for her foresight with this gift. Instead of having to focus on everything brand new coming at me at once, I could focus on what was most important, and that was Mama: loving her, caring for her, being there for her.

The last couple of months Mama was alive, we’d be sitting close, holding hands, and talking and suddenly she’d say “I don’t want be a burden on you,” with tears rolling down her cheeks. I’d squeeze her hands and pull her closer in a hug, kissing the tears away from her cheeks, saying, “Mama, you’re not a burden to me. I love you unconditionally. I wouldn’t be anywhere else doing anything else but right here doing this with you.”

Mama would relax in my embrace and I would hold her tighter as I said these words because they were true and we both recognized that they were true, but most of all, I recognized how easy Mama had made things for me by equipping me with what I needed to step in easily and take care of the routine things so that I could save my energy, my focus, and my love for taking care of her.

In God’s Country: Northeast Tennessee and Mama

This is a remembrance of Mama (written at the blog I created for the memoir I wrote about our family), who would have been 85 today. She fought with strength, dignity, and bravely in all the journeys of her life – including vascular dementia, Lewy Body dementia, Alzheimer’s Disease, and congestive heart failure – and left an example showing us, her kids and grandkids, how to walk and endure our own journeys. Miss my mama and love her dearly. ♥

Fields of Gold: A Love Story - The Book

Eighty-five years ago today, about nine months before the Great Depression began, in Flag Pond, Tennessee, Muriel Foster Ross – my mama – was born to Samuel and Ennis Foster.

A doctor and both grandmothers were there attending the long and arduous birth that was taking a fatal toll on Mama’s mother and led the doctor, upon delivery, to dismissively say “that baby’s going to die” as he handed an underweight and frail Mama to her paternal grandmother, Grandma Foster, and turned his attention to trying to save Ennis Foster’s life.

Grandma Foster countered, “This baby’s going to live!,” and put Mama in the warming bin of the oven in the kitchen – a primitive incubator. Grandma Foster hovered over Mama through that afternoon and night, feeding her and wrapping her up in fresh towels every few hours.

By the next morning, Mama was stronger, had color, and it was…

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“To Sleep; Perchance to Dream:” Dream Research That Could Provide Insights Into R.E.M. Sleep Behavior Disorder and Lewy Body Dementia

There seems to be a lot of current effort going into researching into what happens neurologically while we sleep.

what-dreams-may-comeHowever, this article from Huffington Post that lists nine facts about dreams caught my interest, especially in light of my experience with my mom’s Lewy Body dementia and R.E.M. sleep behavior disorder.

I think this research could give some good insights into this particular facet of Lewy Body dementia, which always fascinated me and intrigued me to watch and listen to when Mama was experiencing it.

The last movie Natalie Wood made before her death in 1981 was a forgettable movie, despite a high-profile cast that included Christopher Walken (who has the creepy eyes of a villain, no matter what character he’s playing) and Louise Fletcher, called Brainstorm.

The movie is about a bunch of scientists who are trying to develop a device that will record everything happening in someone’s brain so that someone else can fully experience the same thing right down to the emotions and physical sensations (much like the virtual reality simulators we have today).

Louise Fletcher’s character is wearing the device when she experiences a fatal heart attack and all her brain activity is recorded.

After her death, Christopher Walken’s character uses the device to walk through Fletcher’s last minutes on earth, but almost dies in the process because he experiences the sensation of a fatal heart attack just like she did. The scientists decide the device is too dangerous and the project is scrapped.

While the movie was awful, the subject was fascinating because neurology is still so incomprehensible for the most part and unlocking all its secrets are, in my opinion, truly beyond the grasp of humans.

So any time we’re able to get just a sliver of a glimpse into how the brain works, it’s another piece of the puzzle, which we’ll never finish, that we can put into place.

There are some facts from the Huffington Post article about dreams that I found interesting, and may be a slightly-ajar door into understanding R.E.M. behavior disorder.

Our bodies react to dreams the same way they would if we were awake and experiencing those things and we dream in real time.

R.E.M. behavior disorder shows us that because we hear it and see it external in speech and motion and there’s a general sense of what’s going on the dream just by what our loved ones are saying and doing.

And as someone who dreams vividly most of the time, I can also attest that this is true.

If I’m falling in my dreams/nightmares (a little more on nightmares later), I literally feel the sensation of falling, which is what jolts me awake. All the fear in the dreams/nightmares is evidenced by my greatly-accelerated heart rate, profuse perspiration, and a long exhalation of breath that I began to hold just before I woke up.

The same thing happens when I’m running (these are my two default nightmares) away from something that’s either dangerous or chasing me. I jolt awake. My legs are tired, I am struggling to catch my breath, and I turn on a light to make sure nothing and nobody is there that I need to run from. All that happens in perhaps a second.

But the next fact about dreams that is fascinating comes into play here. I can’t go back to sleep because I am literally replaying the dreams/nightmares – I do this with other dreams, especially the ones that have meshed people and places and things that don’t belong together in them – too when I wake up and I can see them and go through them awake to try make sense of them or figure out why I dreamed them – almost frame-by-frame.

And there is a cadre of dreams and nightmares I’ve had over my lifetime that I recall just as vividly and in detail right now – I see them in my mind’s eye, if you will – as when I first had them, some of which go all the way back into early childhood.

temporoparietal-junction-rem-behavior-disorder-lewy-body-dementiaResearch has found that people who can recall their dreams regularly have a higher level of spontaneous activity, both in sleep and in wakefulness, in the medial prefrontal cortex and the temporoparietal junction of the brain than those who seldom remember their dreams. 

The temporoparietal junction of the brain is a key player in processing both information from within the body as well as external information, while the medial prefrontal cortex is responsible, in part, for cognition (strategy, decision, actions) in environments where uncertainty (awake or asleep) exists.

Alzheimer’s Disease research shows a greatly-reduced metabolism rate in the temporoparietal junction in general and it appears that all types of dementia affect the medial prefrontal cortex.

One of the primary areas where medial prefrontal cortex research has been done is in PTSD and there is strong evidence to suggest that PTSD is the result of neurological changes within the medial prefrontal cortex.

It would, therefore, probably not be surprising to see a higher incidence of dementias and Alzheimer’s Disease eventually occur within people who have been diagnosed with PTSD.

medial-prefrontal-cortex-rem-sleep-behavior-disorderMy thinking, though, of the higher activity in the temporoparietal junction and medial prefrontal cortex in those of us who usually can recall our dreams, is that it’s actually hypersensitivity of both of these parts of the brain, because research also shows a high sensitivity to sounds when “high recallers” are awake.

I am definitely much more sensitive to sounds, both in frequency, pitch, and patterns, than most people, to the point that they really bother me or I can’t be around them very long because they literally hurt (I can’t exactly explain that in tangible terms, but I experience an almost-unbearable intense sensation of both auditory and neurological pain).

Sudden sounds, whether they’re loud or not, make me jump. Extended exposure to high-volume sounds makes me physically uncomfortable. And a lot of sounds occurring simultaneously overwhelms me.

The impact of this particular research for our loved ones suffering from Lewy Body dementia and R.E.M. behavior disorder, because they do not remember their dreams at all, could lead to a closer look at the medial prefrontal cortex and temporoparietal junction regions of the brain and the role that Lewy Body proteins play in how they function.

A third fact in the Huffington Post article that I found intriguing is that nightmares aren’t always about fear, but other underlying emotions like failure, worry, sadness, or guilt. My guess is that we morph all those other emotions into whatever foundational emotion underlies all of them.

I believe that underlying emotion is the primary emotion we’re most familiar with, understand the best, and either know how to escape (in my case, running) or know it is what will finally do us in (in my case, falling off something high enough that it will kill me, usually the road or bridge that turns into a high-wire I realize I’m on over the middle of the stormy waves of an ocean with no way to get to either end safely and I look down, lose my balance, and start falling).

The last fact I’ll discuss about dreams surprised me because I’ve never heard anyone say this out loud, although I’ve experienced it. You can die in your dreams and live to tell about it.

I never died in my dreams, always waking up before inevitable death, until I was in my late 20’s.

I clearly remember my first dying dream and the sensation of knowing I was dying and then actually, in what seemed like slow motion, going through the process of dying.

How I died was not the way I would ever die in real life, but what I remember most was that once I realized I was dying, it wasn’t scary. In fact, it was, although what killed me was extremely violent, peaceful and easy, with the last sensation I had being one of relief. 

I’ve died on a regular basis in my dreams since then, but the most striking similarities among these dying dreams are that they aren’t scary and there is a profound sense of relief before it all just fades to black.

I suspect because death has been on the doorstep of my life – not me personally, but with my dad first and then my mom – since my late 20’s, the dying dreams are my way of coping with that.

I also suspect that because they haven’t been traumatic experiences for me, they equipped me to better handle the dying processes of both my parents.

And they’ll continue to equip me to handle well the inevitable conclusion to my own life whenever and however it comes.

After all, dreams are just another part of the incredible, albeit mostly out of the reach of humans, complex neurological system of reasoning, thinking, understanding, and responding that our Creator endowed us with.