Click below on the new infographic I created to see it in normal size.
Tag Archive | medical advocacy
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?
Every 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.
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.
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?
“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 11 Excerpt
In this twelfth installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the eleventh step in the journey through dementias and Alzheimer’s Disease.
This post includes an excerpt from chapter 11, which gives comprehensive information on how to acknowledge, recognize, and respond to the eleventh step in the journey through dementias and Alzheimer’s Disease: medical care and medical advocacy.
This chapter discusses the importance of having legal documents in place early that designate power of attorney, medical wishes, and end of life care as well as the role we have in advocating for our loved ones’ medical needs and wishes and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we travel this step in the journey.
This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.
The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9, Chapter 10, and, with this post, Chapter 11.
The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.
There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.
Additionally, there is no other book that discusses:
- The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
- The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
- The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses
These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.
Excerpt “Chapter 11: ‘I’m Just a Little Unwell”
“As our loved ones progress through dementias and Alzheimer’s Disease, medical care will become a more central and ever-present part of the journey. It’s important that we understand this and are prepared in every way possible to become team leaders and advocates for our loved ones to ensure that they receive the right care, the best care, and, as much as they are able, are actively involved in medical discussions, decisions, and care.
At this step of the journey, it is too late to determine finite boundaries of care and to create legal documents designating powers of attorney, living wills, and Do Not Resuscitate (DNR) orders because our loved ones are not considered competent to make these kinds of decisions.
So it is imperative that these decisions and documents are discussed, if not well in advance of the initial signs of dementias and Alzheimer’s Disease, at least in the earliest stages, when our loved ones can decide what they want and convey and formalize those wishes.
In fact, we all should do this, no matter where we are in life. We should have wills, living wills, DNR’s (if that’s what we want). We should talk to the people that we designated to ensure our wishes are fulfilled and let them know that they are responsible and what we want and don’t want.
In addition, someone should have all our financial, insurance, and digital (online access to bank accounts, email accounts passwords, revenue accounts like Amazon and eBay, etc., blogs access are a few examples) information.
It’s important to understand that this does not mean they have or need access to our money or our stuff. Generally this person is going to be the power of attorney for our healthcare and finances (there are legal documents to create and designate these) anyway, and we are the ones who determine when control of our stuff gets turned over to them.
Therefore, it’s important to pick someone we trust and it’s important to review those documents from time to time to ensure that all the information is updated. People get divorced. People die. We add and we drop banks, policies, jobs all the times. Make sure your legal documents reflect all of these.”
If You Needed Help, Does Anyone Have What They Need From You to Step Up to the Plate?
I 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.
This, 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.
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.
This, 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.
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:
“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.
This, 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.
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.
This, 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.
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.
*****
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.
A 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.
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.
Because 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.
An Overview of the Most-Commonly-Used Medications to Treat Symptoms in Alzheimer’s Disease and Dementias
There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline.
There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.
The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.
The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.
So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.
I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.
I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.
I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.
How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.
It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.
All the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.
Since Mama was experiencing hallucinations, paranoia, and delusions, the psychiatrist prescribed SeroquelXR (50 mg twice a day), Citalopram (40 mg a day) for anxiety, Namenda (generic: memantine) for cognition enhancement, Exelon (24-hour-patch/4.6 mg – this is also available in oral form since the patch can cause skin irritation) for cognition enhancement, and Clonazepam (.25 mg/PRN) for extreme agitation as the dementia and Alzheimer’s Disease medication regimen for Mama’s symptoms.
And it worked.
I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.
With the exception of SeroquelXR.
Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).
I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.
So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).
Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.
Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.
Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.
I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.
So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back.
They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.
These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.
In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.
I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.
We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them.
So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.
There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at goinggentleintothatgoodnight@gmail.com. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.
Going Gentle Into That Good Night 