Tag Archive | communication

A Reminder That Applies to All People, Including Our Loved Ones with Dementias and Alzheimer’s Disease

One of the things that has become increasingly obvious in our society – and it seems to have been underwritten by the ubiquity of social media – is an almost total absence of civility among the human race.

We have, it seems, cast off all restraints that might have led us to be gentle, kind, compassionate, empathetic, sympathetic, polite, respectful, and courteous, and we’ve become brutishly uncivil in our words, our behavior, and our actions toward each other. Continue reading

The Steps Our Loved Ones Take in the Journey Through Dementias and Alzheimer’s Disease

Click below on the new infographic I created to see it in normal size.

dementia steps going gentle into that good night

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 3 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the fourth 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 3, which comprehensively looks at the the step in the journey through dementias and Alzheimer’s Disease where communication difficulties arise. It discusses the kinds of communication problems that arise and how we as caregivers can help our loved ones bridge those gaps.

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 3: “’Don’t Think I Know What to Read or Write or Say'”

As more cells die, the functions that these areas of the brain control become more profoundly affected. Language function is controlled in a deeper portion of the temporal lobe, so in the case of just Alzheimer’s Disease, communication problems might not show up for a while.

However, if our loved ones are suffering from other dementias, such as vascular dementia which causes clusters of cell death through the brain, even the innermost parts, because of a stroke or chronic small-vessel ischemia (usually the result of mini-strokes or transient ischemic attacks, also known as TIA’s), then communication problems may occur sooner.

Regardless of how long it takes, communication problems are the third definitive step in the journey, whether it’s a short step or a longer step.

Communication problems in dementias and Alzheimer’s Disease include fall under the general term of aphasia.”

Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 2

verbal and behavior communication hand grenades dementia Alzheimer's Disease human relationshipsIn “Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1,” we looked at the first six of the 12 verbal and behavioral hand grenades that psychoanalyst Trevor Mumby has identified that hamper and inhibit communication with our loved ones with dementias and Alzheimer’s Disease.

As I stated in the first post, these 12 verbal and behavioral hand grenades should be eliminated from all our communication with all humans, because although our loved ones with dementias and Alzheimer’s Disease will visibly and negatively react to each of these hand grenades while non-neurologically-impaired people may not, we still damage and destroy relationships when we use them.

The last six verbal and behavioral hand grenades of communication that Dr. Mumby has identified follow below.

verbal behavior hand grenadeUndermining.

Slowly and insidiously tearing people down from the foundational level with regard to their abilities, their intelligence, their senses of self, their independence, and their character is devastating whether those people have dementias and Alzheimer’s Disease or not. It is literally the equivalent of ripping people apart one piece at a time until there is nothing whole left.

This verbal and behavioral hand grenade is especially destructive because it is thrown subtly at, in the shadows of, and behind the backs of its targets.

It is disguised in whispering about and frequently looking at the person it’s aimed at. It is disguised as joking with the person it’s aimed at, yet the words are always putdowns and the laughing is always at that person’s expense. It is disguised as help for the person it’s aimed at, but the tone and the words are anything but helpful.

For our loved ones with dementias and Alzheimer’s Disease, this hand grenade has an even more profound effect. Already aware of something being wrong, but not knowing what (I discuss this step of the journey in detail in Chapter 2 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease), our loved ones are especially sensitive to their deficits and undermining them verbally and behaviorally adds to the distress that they are already experiencing. This can lead to emotional outbursts, intense agitation, and even violent behavior.

Additionally, if our loved ones with dementias and Alzheimer’s Disease also are in the paranoia step of the journey (this step is thoroughly explained in Chapter 5 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease), undermining them verbally and behaviorally feeds that paranoia and can lead to escalated anger, fear, and physical confrontation.

verbal behavior hand grenadePessimism.

We all struggle with pessimism in our lives from time to time and it can be difficult, if not impossible, for it not to spill over into human relationships. That’s normal. However, pessimism that is always expressed verbally and behaviorally is a hand grenade.

People like me, who see the glass as always being half empty, struggle more than anyone else with this hand grenade. From my earliest memory, I have always expected the worst – because if you’re at the bottom, you don’t have anywhere to fall, but if you’re way up at the top, the fall to the bottom is going to hurt a lot, if you survive it – and if anything other than that happens, then so be it.

I’m a pragmatic person, so I tend to keep my emotional hedges low enough to the ground so that I don’t spend my whole life on a crazy roller coaster with huge ups and huge downs. I could not survive that.

I generally keep my pessimistic tendencies buried deep within because it’s my perspective and one that I don’t want to color anyone else’s perspective with. If someone’s happy or enthusiastic or even just okay, then who am I to spoil that? I don’t want to, so I make a conscious effort not to.

(The few times in my life when my pessimism has gotten bigger than me and spilled out into my other relationships, the responses have tended to be brutal in their condemnation or dismissal accompanied by unsolicited “expert” solutions that I’m apparently too stupid to see on my own.)

I will probably never lose my pessimistic perspective in this lifetime because it’s hardwired into who I am.

However, just because I naturally possess a verbal and behavioral hand grenade doesn’t mean that I have to use it. I work very hard not to use it and it’s one of the big battles of my life to put the brakes on something that is naturally part of the way I think and am, but I do it because I know it’s the right thing to do and because I don’t want to hurt and upset other people.

It can make me unknowable at times. I hide much, if not all, of what’s going on inside myself and I do my best to let people be where they are and express that without me ever saying anything negative. But I also share next to nothing about myself because that’s the only way to keep this hand grenade in check.

For our loved ones with dementias and Alzheimer’s disease, the verbal and behavioral hand grenade of pessimism can be even more potent than with people who don’t have these neurological diseases. It can lead to severe depression, a loss of all communication, and eventually a loss of the will to live.

verbal behavior hand grenadeIgnoring.

This verbal and behavioral hand grenade marginalizes people and eventually makes them invisible. It is characterized by not listening and non-responsiveness, either in vagueness or silence, in verbal communication. Behaviorally, it is manifested by acting as those someone who is in the room isn’t.

We’ve all been in situations where we’ve been ignored both verbally and behaviorally. It’s dehumanizing, it’s disrespectful, and it’s painful. Most of the time when we experience this hand grenade, we simply want to really disappear and get out of the situations where we’ve already become marginalized or invisible because we already aren’t there.

When our loved ones with dementias and Alzheimer’s Disease are ignored verbally and behaviorally, we are telling them that we don’t respect them, they’re already gone as far as we’re concerned, and, most importantly, that they don’t matter.

The most obvious manifestation with our loved ones will be people talking around them, making decisions for them, and not including them at all.

This is a dignity issue (Chapter 12 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease comprehensively covers dignity, independence, honor, and respect).

It is our responsibility as team leaders for our loved ones with dementias and Alzheimer’s Disease to ensure that they are not ignored by anyone. That means including them in all conversations and in all decision processes. That means listening to them with undivided attention and working to communicate with them (Chapter 3 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease is a must-read for maximizing back-and-forth communication) so that they are heard and understood.

verbal behavior hand grenadeNeed to control.

The right tenor of human relationships is to guide where we can, advise when we’re asked, and contribute our strengths, when we are invited, to decision processes. It is not to force (control) or insist (control) or make (control) anyone else do or say anything.

The verbal and behavioral hand grenade of needing to control everything and everybody comes from fear in the person doing it. The effects of someone who needs to control are never good.

For those of us without dementias and Alzheimer’s Disease, someone trying to control everything will be met with resistance, anger, rebellion, and, eventually, total disconnection. Taking choice away from people – which the need to control does – takes life itself away.

For our loved ones with dementias and Alzheimer’s Disease, someone who needs to control everything will bring the same responses, except that the behavior will be different. Emotional outbursts (anger, screaming, yelling, crying) will be continual. Agitation (pacing or restlessness) will be on steroids. Wandering will increase and “escapes” will be frequent.

Wandering and escapes are particularly scary because they present the risk of mortal danger to our loved ones. Therefore, if we struggle with this hand grenade, it might be fortuitous to understand that if we use it, we are potentially putting a live or lives at risk. I wouldn’t want that on my conscience.

verbal behavior hand grenadeQuestioning.

Have you ever had someone ask you repeatedly – after you’ve answered “Yes” – “Are you okay?” What was your response? Have you had someone ask so many questions that it seems invasive? What was your response?

Even though I just asked four questions, I crafted them in such a way to evoke you identifying with them, instead of getting annoyed by them (which is generally what our response to the two scenarios above would be).

Constant questions mean there’s a lot of uncertainty. For our loved ones with dementias and Alzheimer’s Disease, the reality is that there is already a lot of uncertainty in their own minds. A constant flow of questions will likely enhance that uncertainty and cause confusion, followed by irritation.

The other aspect of questioning as a verbal and behavioral hand grenade is that of someone questioning everything another person does. This is commonly known as “second-guessing.” 

What second-guessing says is that the person who is doing it has no trust, no confidence, no faith in anything the person they’re doing it to says or does. For those of us without these neurological diseases, this is a morale-killer, at best, and an anger-generator, at worst.

For our loved ones with dementias and Alzheimer’s Disease, the effect is even stronger. Already wrestling with confusion and a sense of not quite knowing things in context, second-guessing confirms their worst fears. The result is anger, more fear, increased hesitation, and eventually complete withdrawal.

verbal behavior hand grenadeBeing irritating.

This verbal and behavior hand grenade is doing and saying things that we are aware irritate other people, but we do and say them anyway.

This hand grenade is both disrespectful and selfish. People who use this hand grenade say things like “Well, that’s just me” or “Take me or leave me” when they are called out for using it. The implication is that they are not going to change anything about themselves to accommodate or make things easier for everyone else. It expresses the height of both self-conceit and self-importance.

This hand grenade can be even harder on our loved ones with dementias and Alzheimer’s Disease, since thoughtless words and actions are much more difficult to understand and process. Our loved ones will take things much more personally because they don’t have the neurological executive functioning to see them for what they are and to ignore them or recover from them quickly.

This can lead to anger and increased agitation, as well as withdrawal as a protective gesture.

I sincerely hope this series has been beneficial and helpful. We all can learn and change as we examine our own words and behavior to see which hand grenades we might have and not only will eliminating them improve our communication with our loved ones with dementias and Alzheimer’s Disease, but every other human relationship we have and will have.

It’s that important.

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.

 

 

The Rare Dementias: Corticobasal Degeneration (CBD)

Corticobasal degeneration (CBD) – also known as corticobasal ganglionic degeneration (CBGD) – is a rare (occurs in less than 1% of the population) and progressive form of dementia.

The onset of symptoms typically occurs after the age of 60 and the average duration of the disease from onset of symptoms to death is six years.

Although the underlying cause of CBD is unknown, what is known is that CBD is the result of extensive and severe damage in multiple areas of the brain.

Research into this form of dementia is relatively new (it was discovered in 1968), but the most current research has found that there are similar, but not identical, changes in the brain protein tau to the changes observed in progressive supranuclear palsy and Pick’s Disease.

lobes of brainThese areas of the brain where damage is extensive include the cortex (especially in the frontal lobe and parietal lobes) and the deep-brain basal ganglia region of the brain, with the hallmark feature in that area being significant neuron degeneration and the loss of pigment in dopaminergic neurons (signifying a decrease in dopamine production) in the substantia nigra, which controls movement. 

Dopamine is a chemical produced by the brain (a neurotransmitter) that plays a leading role in movement, memory, pleasure,  cognition, behavior, attention, sleep, and mood.

basal ganglia substantia nigra dopamine movement corticobasal degeneration CBD dementiaWhen dopamine production decreases in the substantia nigra, movement is severely affected.

Often this is the first visible symptom of CBD. It presents as stiff movement, shaky movement, jerky movement, slow movement, and increased lack of balance, increased lack of coordination, and clumsiness. Generally, movement problems affect one side of the body almost exclusively, but as CBD progresses, both sides of the body are affected.

Since these movement disorders can mimic both Parkinson’s Disease and the effects of a deep-brain stroke –  one of the classic movement disorders associated with these is ideomotor apraxia (a common example is the inability to initiate walking where the foot seems to be stuck to the floor and can’t be lifted spontaneously to take a step forward) –  those must be ruled out as the causes of the movement disorders.

Other early symptoms of CBD can include difficulty controlling the mouth muscles, cognition problems, and behavioral problems. Language and speech difficulties – dysphasia (an impaired ability to understand or use the spoken word) and dysarithia (an impaired ability to clearly articulate the spoken word) – are also early CBD symptoms.

(In my latest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, I devote a whole chapter to a comprehensive and in-depth discussion of the communication problems, including the different types of dysphasia, that occur with dementias and Alzheimer’s Disease, and ways to work with our loved ones to keep the lines of communication open for as long as possible.)

It is not unusual for CBD to be initially diagnosed, if the first symptoms are cognitive impairment and/or behavioral issues, as Alzheimer’s Disease or frontotemporal dementia. Similarly, if movement disorders are the first symptoms, CBD is often initially diagnosed as Parkinson’s Disease.

However, a clear diagnosis of CBD is usually made when both movement disorders and cognitive impairment and/or behavior problems appear simultaneously.

There is no known treatment for CBD. Unlike Parkinson’s Disease where dopamine-enhancing or dopamine-mimicking medications prove to be effective for some of the duration of the disease, these drugs have proven to be ineffective for treating CBD (this is likely because of the very different pathologies in the development and progression of the two diseases).

In the early stages of CBD, speech therapy and physical therapy may help with communication and stiffness and movement. However, as the disease progresses, these will become less effective and, in the end stage, they will be completely ineffective.

As CBD progresses, other symptoms appear and worsen, including:

  • Rigidity
  • Tremors
  • Involuntary muscle contractions
  • Involuntary eyelid spasms
  • Loss of sensory functions
  • “Alien hand/limb” syndrome (hand or limb movement that the person isn’t aware of nor has control over)

Because of the increased rigidity and lack of muscle coordination and use as CBD progresses, usually within five years of onset, sufferers will be unable to swallow and will be completely immobile. Even before this, though, one of the potentially-fatal risks associated with CDB is aspiration of food into the lungs because of impaired swallowing and the high likelihood of pneumonia as a result.

While a feeding tube may be considered as an alternative when CBD has progressed to the point where swallowing is significantly affected, it is, in my opinion, inhumane because it only prolongs the suffering from a disease that is ultimately fatal.

This is a quality-of-life choice. I can’t imagine for myself a life prolonged where I am completely immobile and completely dependent on everyone else for everything and I can do nothing for myself.

A feeding tube would be my worst nightmare. And for me, it would be the most cruel thing those in charge of making medical decisions for me could do to me.

Fortunately, I already have all my documents in place to make sure this can’t and won’t happen to me when and if the time comes that the choice needs to be made, because I’ve already made the choices. 

So, as an aside, I would strongly urge everyone who reads this to get your wishes formalized and signed and communicated so that you have control over the end game of your life in this area.

Not only is the wise and prudent thing to do, but it eliminates the agony of wondering what to do so often seen in families where the person affected never talked about what he or she wanted and never took the time to answer these questions when he or she could.

 

 

 

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.