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Transcatheter Aortic Valve Replacement (TAVR) Linked to Increased Risk of Neurological Microbleeds and Vascular Dementia

healthy vs failing aortic valveAortic valve failure is a cardiac condition in which the aortic valve fails to open and close properly, negatively affecting healthy blood flow both to the brain and to the body. 

There are two surgical methods currently that can restore normal aortic valve functioning. Continue reading

Remembering a Quintessential Leader: UNC Basketball Coach Dean Smith (1931-2015)

Coach Dean Smith had dementia the last several years of his life and as he made the inevitable slide into deep cognitive impairment, there were very few of his players and coaches that he remembered during the last couple of years.

One occasional exception was Bill Guthridge, his long-time assistant coach who became head coach after Coach Smith’s retirement. Bill Guthridge, it has recently been revealed, is going through the journey of vascular dementia.

This was my tribute to Coach Smith on my leadership blog and it deserves a place here because he has gone gentle into that good night.

The Quintessential Leader

Coach Dean Smith UNC quintessential leaderCoach Dean Smith, who led the University of North Carolina basketball program for 36 years, died on February 7, 2015 after a long battle with dementia. Throughout his coaching career and his life after coaching, Coach Smith embodied many of the characteristics of quintessential leadership.

He was not a perfect man, but none of us can claim perfection either. There were times when he wasn’t a quintessential leader, just as there are times we are not quintessential leaders.

But when Coach Smith’s life as a whole, both on the basketball court and off, is considered (and that’s the only way to consider anyone’s life, including our own, because no one – including each of us – gets it right every single time), it’s clear that his goal was to be a quintessential leader. And the results of his commitment to that goal are evident to this day.

I grew up…

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Do You Know And Have You Prepared What You Need To Ensure That You And Your Affairs Will Be Well-Taken Care Of When You Need Help?

financial legal medical documents power of attorney going gentle into that good nightEvery few months, I write a post on the immediate need for everyone – no matter what their age, their health, or their life circumstances – to know and understand the vital information that needs to documented (and executed in terms of legal documents) and communicated to their designee when they are unable, either temporarily or permanently, to take care of their own affairs.

This includes digital access (email accounts, online bank accounts, retail accounts, etc.) documentation as well as legal, medical, and financial documents everyone needs to have in place when we need help or can’t take care of our own affairs in this area.

I am extremely puzzled by the fact those most people put this off and avoid thinking about it or doing it. It’s illogical and it is really cruel to those whose laps it ends up in.

I can’t tell you how many stories I’ve heard about a family member – especially parents of grown children – being incapacitated with life and death in the balance and because nobody ever talked about this contingency and no documents – living wills and/or DNRs – exist, there’s no clear decision-maker and the ability to let go (taking off life support when there’s no chance of recovery) is long, hard, and gut-wrenching on the family.

And the one who didn’t take the time to spell out their wishes suffers terribly and needlessly, not to get better, but essentially just to run up a meaningless huge debt that will decimate their estate and perhaps ruin the financial health of those they leave behind. 

None of is guaranteed our next breath, a healthy life with no life-changing accidents and diseases, nor a healthy mind for as long as we live. Things could literally change 180% for any of us and our families and loved ones while we’re reading this sentence. Yet, of all the things it seems that we humans deceive ourselves about, this seems to be the top “It won’t happen to me.”

But the reality is that it will.

If not sooner, then later.

And the most selfish and irresponsible thing that we can do to our families and our loved ones is to not be prepared ourselves and to not ensure that we have designated and prepared the decision-makers we choose in advance.

This is one of the greatest acts of love and one of the biggest blessings we can do for and give to those closest to us and whom we love the most.

to be prepared is half the victoryAll 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.

With the precipitous rise in dementias overall, which may be in part related to a more toxic planet, more toxic water, and more toxic food, and the burgeoning number of lifestyle-related dementias that are emerging, the odds are not in our favor that every single one of us, in time, will not suffer from some sort of neurological degeneration. 

Who is going to help us when this happens?

And even if you or I are the exception to the rule, we’re still going to die. Everybody dies.

You can ignore it, you can deny it, you can live in some fantasy world where you refuse to think about it ever, but it doesn’t change the reality that it will happen to you and me.

I believe most of us assume that death 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 review and update, if necessary, both of those when my circumstances change or 12 months have passed. I have a signed and notarized DNR.

I have complete documentation on my digital footprint, as well as other financial, medical, insurance, property, and notification (for death) documentation that I keep updated as well.

I have detailed instructions regarding my funeral service and my burial.

Do you?

If not, why not?

What are you going to do about?

When are you going to do something about it?

What if tomorrow never comes?

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

financial legal medical documents power of attorney going gentle into that good nightI went to a metropolitan senior center as an observer for an Alzheimer’s Association class today that was eye-opening as far as how few of the seniors in the class knew and understood what legal, medical, and financial documents they needed to have in place in the event that they needed help or could not take care of their own affairs in this area.

The questions they asked, which I was able to help answer, reminded me that I can’t overemphasize the explanations of these documents, the reasons why they are needed, and that the time is now for everybody, regardless of your age and health, to have these in place.

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.

The Second Anniversary of Mama’s Death (8-14-14)

Today is the second anniversary of my mama’s death.

I miss her. But my love, care, and concern for her well-being outweighs my own pain and loss. Because her journey through vascular dementia, Lewy Body dementia, Alzheimer’s Disease, and congestive heart failure is over and she sleeps peacefully, awaiting the promise of total healing in the resurrection.

For that, I’m thankful.

Medical, Financial, and Legal Advocacy and Help: What Happens If You Can’t Advocate For and Help Yourself?

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 as her advocate on all fronts, including in legal, medical, and financial affairs.

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.

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.