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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. 

Where are you? stings more now

Early on in Mama’s dementias and Alzheimer’s Disease – as I was grappling with understanding and accepting what was happening to her mind – it occurred to me that all humans go through an initial incline, a longer period of plateau, and then a final decline.

The decline mimics childhood in reverse, until if we live long enough we end up being like a newborn, totally helpless, totally dependent, unable to express ourselves except through the most primal language we humans have: laughter and tears.

I always told Mama that I’d do everything possible to make sure her second childhood was better than her first one. I did my best, making mistakes along the way (just like there are no instruction manuals for the day-in, day-out parenting of a child, there are no instruction manuals for becoming a parent to your parent, so you learn as you go), but assured that the one place I did not fail Mama was in making sure she knew she was loved, she was wanted, and I wasn’t going to leave her.

My hope is that in our simultaneous and shared journey of her taking two steps back and one step up and me taking two steps up and one step back that, in the end, my love, my care, my concern, my devotion, and my commitment was enough to make up for all the things I didn’t know, didn’t understand, and sometimes screwed up because of my own ignorance and ineptness.

This is not a journey for the faint-hearted. Once committed, even though no one ever really knows what they’re getting into, it requires a lot of tenacity and a lot of prayer. But it also requires unconditional love, abundant mercy, infinite patience, persistent gentleness, and unfailing kindness.

These are the life and character lessons parents learn from raising their kids. For those of us fortunate enough to complete the circle of life for our parents as they go gentle into that good night, we get the opportunity to learn these same life and character lessons.

It is a priceless gift and one I’m thankful to have received.

Dealing with Dementia

spiralstair A year a half ago, I posted an article entitled “Where are you?”  — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.

I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.

She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my…

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Siblings, Gratitude and Aging Parents – AARP

Unfortunately, more times than not, siblings do not share equal responsibility for caregiving for our parents with dementias and Alzheimer’s Disease. Sometimes it’s a simple matter of physical distance: they want to help, but they are too far away.

However, that is generally not the reason.

Parent-child relationships are complicated from the get-go and each child makes a conscious decision whether to maintain a close relationship or not with his or her parents as an adult (usually as soon as he or she leaves home). These are heart decisions.

For siblings, much of whatever the tenor of their relationships were growing up extends into their relationships as adults.

However, one of the complicating factors is real and imagined grudges and resentments (known or unknown) by siblings, often from perceived wrongs that occurred all along the way of their lives, that are nurtured and grow into full-blown anger and disconnection from each other and from the family.

This happens disproportionately more often than it doesn’t, but if caregivers find themselves in the rare position of having supportive and engaged and grateful siblings, then they should count their blessings. 

Mom & Dad Care

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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.

Making Sure We Have the Personal Information We Need to Help Our Loved Ones with Alzheimer’s Disease and Dementia

Author’s note: I originally posted this in 2013, but like medical advocacy, this is important enough that I will be reposting it monthly to remind us all that we need to have all our physical affairs – medical, legal, end-of-life, and digital – in order now.

Tomorrow is promised to no one. It’s hard enough to deal with loss (in the case of dementias and Alzheimer’s Disease, there are two losses to deal with) without having the process made as easy as possible by those we’ve lost.

This is one of the kindest acts we can do for those we leave behind who have to wrap up our physical lives in the face of grief and loss. Not doing this just makes things harder than they need to be.

Final wishes - digital and documentsI urge everyone today to stop and take care of these things (be sure to update them as things change) as an act of love and kindness.

This post by Kay Bransford, on her Dealing With Dementia blog, is important enough that I want to share it here, as well as the reminder she wrote today (January 21, 2014) for all of us who are – or may be in the future – caregivers for loved ones with Alzheimer’s Disease and Dementias.

We live in a digital age and we work very hard to protect ourselves online from things like identity theft and access to our financial and personal data.

However, it is important to make sure that we give access to our POA’s in case something happens to us and it is important that we have this information for our loved ones with Alzheimer’s Disease and dementia whom we are caring for and, if not already, will be entrusted to handle their legal, medical, and financial affairs for them.

So, Kay’s advice is timely for all of us.

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Author’s note: I originally posted this in June 2013. I am posting it again because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses.

I see and hear so many cases of our families not preparing ourselves and our loved ones for the end of life. The reality is that we’re all going to die. It’s imperative that we make sure that our wishes at the end of life are not only clear to those who will make the decisions for us, but also legally binding.

Today is the day to get your wishes in order and to get the necessary legal documents in place to make sure your wishes are adhered to.

Today is also the day for making sure that your loved ones know what you want at the end of your life (I have a DNR and no-extraordinary-measures living will in place with my POA – when it’s time, they know to just let me go).

Spare your loved ones the agony of trying to decide, in a time of stress and crisis, what you would want. If they know, that is one of the greatest acts of love you can give them.

Most people are reticent about the future and death, but by avoiding doing that very thing, you are putting to the people you love most in an untenable position. Making arrangements and making them clear to those you love and leave behind is the greatest act of love you can show them.

You will die. I will die. That’s a fact of living. How we die and when we die rests in the hands of God. But we have the ability to make sure that, through living wills and DNRs, we don’t make things harder for our loved ones who have to let us go and for the will of God to be accomplished for us.

Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease” offers a more comprehensive list of the areas in which we can offer help and support to our loved ones.

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Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as  un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

Living willA living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

DNR (Do Not Resuscitate)A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

hospitalizationBecause of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations. 

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it. 

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.

The Layperson’s Guide to Early-Onset Dementias

There are several types of common early-onset dementias. Early-onset dementias are categorized as dementias where the onset of symptoms is prior to age 65. These dementias can occur as early as the 30’s, but more typically become symptomatic in the 40’s and 50’s.

Early-onset dementias, unfortunately, are still off the main grid for medical staff – a classic instance of fixed expectations that dementias won’t be an issue for a person until after age 65 – and our loved who are diagnosed with early-on dementias face challenges that our older loved ones who are suffering with these diseases don’t face. These include:

  • Difficulty getting a correct diagnosis
  • Loss of employment and income
  • Difficulty getting Social Security Disability Insurance, Medicaid, and other employment-related disability insurance
  • Loss of health insurance and high-out-of-pocket costs for medical care
  • High out-of-pocket costs for long-term care
  • Lack of appropriate medical care, residential care, and community services (all of these are geared toward an older population)

Early-onset dementias typically are harder to diagnose because other than the dementia systems, sufferers are usually healthy, active, and aware there is a problem.

Additionally, the symptoms of early-onset dementias usually don’t have memory impairment as the predominant feature. Most often, behavioral and personality changes occur first, so usually the first type of treatment is psychiatric instead of neurological.

The causes of early onset-dementias fall into three categories: random, genetic, and lifestyle.

Random early-onset dementias are just that. There’s no concrete link to a cause. My opinion is that few of these in this category are actually random, but the causative issue(s) have not been identified yet.

Genetics plays an important role in certain early-onset dementias (and, although the scientific community has overlooked or disregarded the familial aspect of elder-onset dementias, it appears very likely, from observation, that if there’s a family history of elder-onset dementias, there may be a genetic predisposition for development of elder-onset dementias in subsequent generations).

Three genes are known to have mutations in the case of some sufferers of early-onset dementia, Alzheimer’s type (symptoms related to these genetic mutations usually begin in the 30’s and 40’s):

  • Amyloid precursor protein gene (APP) on chromosome 21
  • Presenillin-1 (PSEN-1) on chromosome 14
  • Presenillin-2 (PSEN-2) on chromosome 1 

We’ve talked extensively here about lifestyle dementias with regard to management of health (blood pressure and blood sugar) and substance abuse, as well as with regard to what we eat and how we live daily life. Some of the early-onset dementias we will talk about here can be directly attributed to lifestyle.

There are several types of early-onset dementias.

At least 1/3 of all sufferers diagnosis with early-onset dementia have Alzheimer’s Disease (remember that Alzheimer’s Disease is a type of dementia, but is not inclusive of all types of dementia, just as all photocopiers are not Xerox photocopiers and all facial tissues are not Kleenex facial tissues).

Onset symptoms include progressive and episodic memory loss, as well as visuospatial and perceptual deficiencies, but intact language and social functioning.

early-onset dementia, Alzheimer's type, Pat SummittThis type of early-onset dementia is more common in women than men. Once symptoms appear, the duration of the disease averages eight years.

A recent example is the 2011 diagnosis of former University of Tennessee women’s head basketball coach, Pat Summit, who was diagnosed with early-onset dementia, Alzheimer’s type, at age 59. Coach Summitt stayed with the team one more season, but was not actively coaching that season.

Coach Summitt retired in 2012 and has begun the Pat Summit Foundation to raise Alzheimer’s Disease awareness.

"Still Alice" by Lisa Genova - early-onset dementia, Alzheimer's typeThe novel, Still Alice, written by neuroscientist Lisa Genova, gives a scientific, compassionate and compelling look from the inside out of a 50-year-old Harvard psychology professor as early-onset dementia, Alzheimer’s type enters and progresses through her life.

Since the publication of Still Alice in 2007, Genova has continued her work with bringing the neuroscience of all types of dementias in the same compassionate and compelling style of her first novel through subsequent books and through documentaries produced with her husband, who is a filmmaker.

MRI-vascular-dementia-diffuse-white-matterThe second most common type of early-onset dementia is vascular dementia. Vascular dementia can occur because of:

  • Multiple cortical infarcts (small areas of tissue that have died from the lack a blood supply) that are most often caused by transient ischemic attacks (TIA’s) or silent strokes and characterized by stepwise deterioration of cognitive function
  • Small-vessel disease, resulting in a more subtle decline of cognitive function
  • Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL)
    • Rare cause of early-onset subcortical strokes and dementia
    • Caused by a mutation of Notch 3 gene on chromosome 19
    • MRI shows diffuse white matter lesions on the cerebral hemispheres, especially in the anterior temporal lobes and external capsules

With early-onset vascular dementia, there are usually lifestyle factors involved such as uncontrolled or undetected high blood pressure and an unhealthy diet. Recent scientific research has also linked high cholesterol levels with the development of vascular dementia.

frontal and temporal lobes function FTD early-onset dementiaThe third most common type of early-onset dementia is frontotemperal dementia (FTD), also known as Pick’s Disease, which affects the frontal and temporal lobes of the brain. FTD usually has an onset between the ages of 45 and 65. Its average duration is eight years. 

There are three types of FTD: behavioral variant FTD, semantic dementia, and primary progressive (also known as progressive nonfluent) aphasia.

In about half the cases of FTD, there is a positive family history for the disease, indicating a probable genetic link (although researchers have not yet identified the genetic mutation).

FTD can co-occur with motor neuron diseases (ALS, also known as Lou Gerhig’s Disease, is an example of a motor neuron disease), but only about 10% of sufferers of only motor neuron diseases develop dementia, resulting in a very aggressive course of the illness.

FTD presents differently from early-onset Alzheimer’s Disease and early-onset vascular dementia because the first symptoms involve changes in personality and social conduct while memory, perception, and visuospatial skills remain unchanged.

The most common indicators are:

  • Behavior disturbances
  • Personality changes
  • Decreased motivation
  • Reduced empathy
  • Impaired planning
  • Impaired judgment
  • Speech and language difficulties

As FTD progresses, other symptoms become apparent:

  • Difficulty behaving appropriately in new and unfamiliar situations
  • Loss in inhibitions (disrobing is not uncommon)
  • Loss of social skills
  • Emotional outbursts
  • Impulsivity
  • Executive function deficits
  • Decreased verbal fluency
  • Compulsive or repetitive behavior
  • Lack of insight
  • Self-neglect
  • Inappropriate sexual behavior

The semantic dementia form of FTD includes symptoms of:

  • Difficulty with correctly naming objects (people, places, and things)
  • Impaired understanding of the meaning of words
  • Inability to understand substitute words

However, in this form of FTD, speech remains fluent and cognition remains intact. MRI scans show more atrophy of the anterior temporal lobe than the posterior temporal lobe.

The primary progressive (progressive nonfluent) aphasia form of FTD is characterized by:

  • Progressive decline in all language skills, with no other cognitive deficits
  • Increased difficulty with speech and speaking (by the end of the disease, most sufferers don’t speak at all)
  • Speech and speaking is not fluent and requires a great deal of effort

MRI scans show predominant atrophy of the left perisylvian region of the temporal lobe.

The fourth most common type of early-onset dementia is Lewy Body dementia. I’ve included the link to my post about Lewy Body dementia for a full description, but will include a brief summary of the dementia’s Lewy Body Protein - Lewy Body dementiaprimary symptoms:

The fifth most common type of early-onset dementia is Wernicke-Korsakoff Syndrome (alcohol-related dementia). This is a lifestyle dementia, brought on by long-term, heavy alcohol consumption.

wernicke-korsakoff dementia (alcohol-related dementia)

Characteristics of Wernicke-Korsakoff Syndrome include:

  • Damage to the limbic structures and frontal lobes
  • Memory impairment
  • Executive functioning impairment
  • Autobiographical memory is frequently affected resulting in confabulation (making up stories)
  • Memory loss stops where it is when drinking stops (damage already done remains)

As shown by the MRI scan above, there is general cortical atrophy along with damage to the frontal, parietal and cingulated regions of the brain, with the majority of the damage occurring in the frontal lobe.

There are two other less common types of early-onset dementia that we’ll discuss.

One is Huntington’s Disease. As this genetically-inherited disease progresses, dementia develops.

MRI Huntington's DiseaseEveryone is born with this gene. However, in Huntington’s Disease, an inherited mutated copy of this gene (on chromosome 4), produces a defective form of the huntingtin protein that causes degeneration and death of the neurons, especially in the center of the brain. 

Because this gene is a dominant gene (as opposed to a recessive gene), everyone who inherits the mutated copy of the gene will, at some point, develop Huntington’s Disease.

Symptoms typically appear between ages 30 and 50, but it can begin at a very young age or appear in the very elderly. Primary symptoms include:

  • Lack of muscle coordination in the arms, legs, head, face and upper body
  • Progressive decline in thinking and reasoning skills, including memory, concentration, judgment and the ability to plan and organize
  • Mood disturbances, including depression, anxiety, anger, and irritability
  • Obsessive-compulsive behaviors

The last type of early-onset dementia, which is extremely rare, is Creutzfeldt-Jakob Disease (CJD). CJD is characterized by rapid neurological degeneration. It is always fatal, and death usually occurs within six months to a year of onset.

CJD belongs to a class of human and animal diseases called transmissible spongiform encephalopathies (TSEs), because the infected brain looks like a sponge. The average age of onset for CJD is 60.

“Mad Cow Disease” is the bovine equivalent of CJD (although it tends to affect younger people, with the average age of onset being 26). 

There are three types of CJD:

  • Sporadic (no known cause) – accounts for about 90% of cases
  • Inherited (family history of the disease) – accounts for 5-10% of cases
  • Acquired (transmitted by exposure to brain or nervous system tissue, usually through certain medical procedure) – accounts for less than 1% of cases

Creutzfeldt-Jakob Disease MRIThe symptoms of CJD include:

  • Rapidly progressive dementia
  • Problems with muscular coordination
  • Personality changes, including impaired memory, judgment, and thinking
  • Impaired vision
  • Insomnia
  • Depression
  • Lethargy

As CJD progresses, mental impairment becomes severe. Sufferers often develop involuntary muscle jerks (myoclonus), and they may go blind.

Eventually, they lose the ability to move and speak and become comatose. Pneumonia and other infections often occur as well, and they generally end in death.