Tag Archive | Caregiving

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 2 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the third in a series of posts that includes chapter excerpts from You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 2, which comprehensively discusses the step where our loved ones with dementia and Alzheimer’s are aware that something’s wrong neurologically, but they don’t know what and the internal and external conflicts that presents for them and us.

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 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:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. 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.

going gentle into that good night divider

Excerpt “Chapter 2: ‘There’s Someone in My Head, But It’s Not Me'”

“In this stage of dementias and Alzheimer’s Disease, where mild cognitive impairment is more obvious, but the extensive neurological damage characterized by the later steps in these diseases has not yet occurred, most of the time our loved ones will function fairly normally and will be lucid.

However, they have an, sometimes quite acute, awareness of their own mental slippage and that something is not quite right. In other words, they are aware they can’t remember things, they are losing things, they are having trouble following directions, and they can’t seem to hold on to new information for any length of time.”

Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1

verbal and behavioral hand grenades relationships dementias Alzheimer's DiseaseCommunication – verbal and behavioral – is the cornerstone of human relationships. It turns out, as all of us have no doubt discovered along the way, that we humans aren’t all that good at successfully communicating with each other all the time.

Admittedly, some of us are better – but not always – at communicating well and consistently with other humans than others of us are.

Our propensity toward communication difficulties leads to a lot of problems in the normal course of our relationships with others. Misunderstandings develop. Feelings get hurt. Relationships are ripped apart irreparably, at least for this lifetime.

However, for our loved ones with dementias and Alzheimer’s Disease, where executive function, cognition, and understanding are compromised by neurological deterioration, these communication difficulties are even more devastating and can often lead to extreme agitation, volcanic emotional outbursts, and inappropriate behavioral manifestations.

Psychoanalyst Trevor Mumby, who has spent his career looking for ways to communicate more effectively with those who have dementias and Alzheimer’s Disease, has identified twelve areas of communication that are verbal and behavior hand grenades that can create emotional havoc with our loved ones with dementias and Alzheimer’s Disease.

I submit that if we eliminated these communication hand grenades in all our relationships, we’d be taking a huge step forward in better communicating with other human beings.

In this post, we’ll look at the first six verbal and behavioral hand grenades of communication that we need to eliminate, and in the next post, we’ll look at the last six.

hand grenade dementia Alzheimer's DiseaseBeing opinionated.

Nothing gets emotional upheaval going in all of us like someone who is overbearing and knows everything about everything and will not stop pushing their opinions and their agendas over and over and over ad nauseum until everyone agrees (or just disappears by folding up within themselves and shutting down).

For our loved ones with dementias and Alzheimer’s Disease, this communication hand grenade will evoke strong negative emotional and behavioral responses, ranging anywhere from being emotionally inconsolable to being physically violent.

hand grenade dementia Alzheimer's DiseaseInterrupting.

Even in normal communication, constantly being interrupted or cut off while trying to express something completely is aggravating.

I tend to take longer, verbally, to express myself because I’m not a natural ad hoc speaker and it’s out of my realm of capability and temperament to think out loud, process and talk concurrently, and be engaged in unedited conversation.

I find myself frequently on the receiving end of being interrupted because I pause a lot to try to find the right word, tone, meaning before I say it. My response to interrupting is to stop talking and avoid verbal communication with people I know will interrupt me.

In this area, I have a strong affinity with and empathy for our loved ones with dementias and Alzheimer’s Disease who, because of often-extensive neurological damage to the speech and hearing pathways in the brain, struggle to understand what is being said and how to respond to it (I discuss understanding and successfully navigating communication difficulties comprehensively in Chapter 3 of my book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease).

As a result, exaggerated pauses in speaking occur and it’s almost second-nature to interrupt and fill in the missing words and/or thoughts we think our loved ones are trying to say. And this can create extreme agitation and emotional upset because we are likely wrong in what we conclude they are trying to communicate and because we’re both being disrespectful to and taking away independence from our loved ones with dementias and Alzheimer’s Disease.

hand grenade dementia Alzheimer's DiseaseProvoking.

This hand grenade can be both verbal and behavioral. Some people are unaware that they are provocating, while other people revel in it. My daddy, who didn’t like it any more than I do, used to call it “getting a rise out of someone.”

Verbal provocation is a conscious hand grenade. It is characterized by insistent, persistent, and increasingly abusive language toward someone else with the intended results being anger and fighting. Yep, there are actually people – and we all know them, unfortunately – who really enjoy doing this.

Behavioral provocation is usually an unconscious or unknown hand grenade. We all have things that we do and habits that we have that get on someone else’s last nerve, but oftentimes we have no idea that we’re provoking them in the process.

For our loved ones with dementias and Alzheimer’s Disease, verbal and behavioral provocation can be a communication powder keg. We need to remember that the neurological damage in these diseases affects perception, reasoning, and understanding profoundly. We also need to remember that having dementias and Alzheimer’s Disease increases the fearfulness of our loved ones.

Therefore, verbal provocation, which can be threatening and scary to those of us who do not have dementias and Alzheimer’s Disease, can create terror in our loved ones who do. And we all know that fear generates that adrenaline rush known as the “fight-or-flight” response.

Whichever of these gets triggered in our loved ones will be exaggerated. Evidence of this response can include frequent and uncontrollable agitation, constant pacing, increasing wandering with the intent of escape (outdoors), or fighting (hitting, biting, etc.) when they are provoked.

Behavioral provocation will most likely evoke anger and impatience in our loved ones with dementias and Alzheimer’s Disease. This can escalate to physical violence in an attempt to stop the provoking behavior.

hand grenade dementia Alzheimer's DiseaseContradicting.

Another hand grenade is the habit of disagreeing with, arguing with, and contradicting everything the other person says. Part of what is behind this verbal and behavioral hand grenade is the need to be right all the time (insecurity and/or inflated ego are at work).

We all know people like this and I personally steer clear of them as much as I’m able. When I have to be around them, I get quiet and stay quiet and try to escape them as quickly as possible.

However, the hand grenade of contradiction is very damaging to our relationships with our loved ones with dementias and Alzheimer’s Disease. Remember, these diseases, by their very nature, take sure knowledge away from our loved ones. It causes them to be tentative about everything because they don’t remember what they don’t remember.

Contradicting them on everything only adds to the tentativeness, the hesitation, the confusion and will eventually cause our loved ones to shut down and stop communicating altogether (you’ll note that this is not all that different than what I think most of us who don’t have dementias and Alzheimer’s Disease do only when we are around people who contradict us all the time) with everyone.

hand grenade dementia Alzheimer's DiseaseExpecting gratitude.

Let’s face it. Most of life is a pretty thankless task. However, part of human relationships is doing what you are able for others when you are able because it’s the right thing to do.

If we expect gratitude all the time, then the motive behind what we do is selfish and self-centered: we want recognition, we want praise, we want our egos stroked. In essence, our actions and words are all about us and never about those for whom we do or give them.

For people who expect the limelight all the time for all they do and say, we find that they will stop doing for and saying things to the people who don’t feed their egos with lavish praise and fawning gratitude. They basically just cut those people out of their lives.

Not expressing gratitude consistently among our loved ones with dementias and Alzheimer’s Disease is part of the neurological disease process. Remember that the brain is where the concept of thankfulness and gratitude are formed. As the brain deteriorates, concepts and ideas, which are high-level executive functioning, begin to disappear to one degree or another.

If we are expecting gratitude all the time, will we cut our loved ones out of our lives because they’re not meeting our expectations? Sad to say, this does happen. But shame on us if this is our motivation and our response.

hand grenade dementia Alzheimer's DiseaseTalking loudly.

Somehow all of us humans are innately wired to believe that if we just say something in a louder voice, it will be understood better by the person or people we are talking to.

Because my mom had a severe hearing loss most of her life, I saw this up close and personally with people who didn’t know her. Early in our childhoods, Mama explained that when people were talking to her she read their lips and that slowing down just a bit and enunciation, not volume, was the key to her being able to understand what was being said if she couldn’t hear it.

Even before her journey with dementias and Alzheimer’s Disease, she didn’t like to be around people who always talked loudly or people who talked loudly to her as a way of communicating with her.

And I’ve never been able to handle loud talkers either. It literally hurts my ears and I physically need to get away as quickly as I’m able when I’m around people who normally talk in a loud voice.

The same is true for our loved ones with dementias and Alzheimer’s Disease (I’ve often wondered how much the double whammy was for Mama to have both a profound hearing loss and vascular dementia, Lewy Body dementia, and Alzheimer’s Disease – I really can’t imagine).

Volume in speech will not help them understand more or better what our loved ones have already lost in understanding and comprehension because of dementias and Alzheimer’s Disease. What it is most likely to do instead is make them fearful because they know the noise is loud, but they don’t know why.

As we talked about before, fear can produce intense agitation, continuous pacing, frequent wandering to escape, and, at its worst, physical violence in our loved ones with dementias and Alzheimer’s Disease.

These are the first six verbal and behavioral hand grenades that we need to eliminate in our relationships with our loved ones with dementias and Alzheimer’s Disease. The reality, though, is that we need to eliminate them in all our human relationships, so everybody on the planet could benefit from reading this series.

In the next post, we’ll discuss the last six verbal and behavioral hand grenades we need to eliminate.

 

 

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 Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease

In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.

In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.

Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.

Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.

As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.

That intermediate option is palliative health care at home.

Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months. 

Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.

palliative health care layperson's guidePalliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.

Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.

Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.

The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:

  • Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
  • Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
  • Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)

Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.

Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.

The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.

Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.

Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.

In the next post, and the last one in this series, we’ll discuss hospice care.

Promotional Video for “You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease”

The promotional video for You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease (published in April 2014) gives the background of why I wrote this book and gives a brief summary of each of the chapters in the book.

As someone who experienced this journey first-hand with my mom and who, since her death, has been actively involved in providing support, counseling, and information, as well as just listening, to many people who are on this journey themselves or with loved ones, I discovered the need for a book like this.

It’s personal. It’s accessible. And it’s practical. There is no other book on the market like it.

If you don’t read another book on dementias and Alzheimer’s Disease, you should read You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease (available on Amazon in both paperback and Kindle versions). It will be an invaluable resource that will help you and your loved ones tremendously as you walk the steps of this journey together.

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.

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.

Beauty in the Breakdown – You Sure?

This resonated deeply with me. Music is such a powerful force in our lives. Since Mama died, there is much music that we shared throughout our time together that I simply can’t listen to without tears flooding my eyes as memories run their movies, crisp, clear, and vivid through my mind.

Unlike Kay, I’m not a big fan of techno-pop, preferring alternative, indie, and grunge, but I listen mainly to Radio Paradise, an internet music station that plays the most diverse range of music that I’ve been able to find, and they have played “Beauty in the Breakdown” by Frou Frou.

Ironically, it caught my attention the first time I heard it as well. I immediately saw the double meaning in my own life.

Mama’s breakdown. There was no beauty to that to be sure. However, there were beautiful moments throughout the journey. Two are prominent in my mind, when in the middle of all the chaos, confusion, and pain, Mama was delightfully Mama again. I’ve never been able to explain the timing, however, because both were just before big changes. One was the Saturday morning before Mama’s breakdown several hours later and the other was the Saturday and Sunday morning before Mama went into her death sleep in the early hours of that Sunday afternoon.

My own breakdown after Mama’s death. Beauty? It certainly doesn’t seem to be true on the surface.

I’ve never been a visibly emotional person. I worked hard, diligently, painstakingly at “controlling” my emotions all my life. I have always been very deeply affected by things and people and situations, but I found ways to keep a tight lid on that so it never showed and built fortresses around myself to protect myself.

Those fortresses began to crack after Daddy died. I never knew how deeply, how long, and how hard grief could be. I also never knew that the hole left in a heart from losing someone you love never heals completely. But I had Mama to take care of so it helped me move on quickly, burying, I think, much of what I was trying to come to grips with, and get back to the business at hand. She needed me, and that was more important.

But when Mama died, the very foundations of those fortresses seemed to have collapsed. It seems that every emotion I suppressed, hid, buried, ignored decided it was time to deal with it. All at once. In an overwhelming flood that has been difficult, to say the least, to try to sort through, make sense of, and get past.

These days, it seems I can barely speak a sentence without my voice cracking and tears welling up in my eyes. It seems as though everything is right beneath the surface waiting to just spill out without warning. I have cried rivers of tears and yet there seems to be no end to how many rivers are left. I keep thinking at some point there just can’t be any more tears, and then they come again.

But although right now I seem to be drowning in this ocean of tears, I recognize the beauty in it. Because there is some healing in the process. I’ve learned that sometimes to fix something that’s not working right or well, you have to take it completely apart, and put it back together the right way, piece by piece. And that takes time.

And, like Kay, I do recognize this about myself: “I recognize that I’m a much kinder, gentler version of my former self. For that I’m grateful.”

Dealing with Dementia

letgo Music uplifts my mood. It helps me focus and makes me happy. I will typically be listening to techno-pop — it’s better than caffeine if I want a pick-me-up.

I first heard Let Go by Frou Frou when watching Garden State (I thought it was on at the closing of an episode of Gray’s Anatomy — a show I never really watched, but Internet sources won’t validate my recollective memory on that point). It’s been in my head, but never on my iPod, so I finally downloaded it last week. I like the tune and the focus on “letting go and jumping in.”

However, today this song brought me to tears as the words hit me very differently. For a few weeks I’ve noticed a decline in my Mom. When I arrive at her community she is in the living room playing bridge with a new group of residents. Now…

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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. 

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.