Tag Archive | Dementia

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

This 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:

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 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.”

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

Dec19

This 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:

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

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.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 1 Excerpt

Dec18

This series of posts about You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease began with the forward to the book and an explanation of why I wrote this book and why you should read it.

This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).

The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.

That was intentional on my part for two reasons.

One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.

The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.

And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.

Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.

But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.

And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.

That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.

It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.

Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”

“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.

What does this look like in practical terms?

Repeating things in conversations, stories, and writing

This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.

Frequently losing and misplacing things

We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”

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

Sep14

This is the last installment in a series that Going Gentle Into That Good Night has presented to discuss, in clear, practical, and informative language, the on-going health care options in the home that are available for our loved ones with dementias and Alzheimer’s Disease.

In the first post, “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the home health care option.

In the second post, “The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the relatively-unknown and highly-underutilized option of palliative care, which all caregivers at home should have in place for their loved ones in the long journey between acute health crises and death.

In this post, we will discuss the hospice care option. I will talk about the requirements to be admitted to hospice care and what it means for our loved ones with dementias and Alzheimer’s Disease in terms of the kind of care they can receive.

I will also discuss how hospice care works in a home setting (there is a hospital hospice option, but we will not discuss that in this post which is geared toward caregiving for our loved ones at home).

I will also walk you through the end-of-life process and how hospice is designed to support our loved ones and provide assistance to caregivers in the immediate aftermath of the death of our loved ones with dementias and Alzheimer’s Disease.

And, finally, I will frankly and honestly talk about the good, the bad, and the ugly that the hospice experience can be and I will provide you guidance on how to handle that at a time when mentally and emotionally this can be the toughest decision we make in caring for our loved ones with dementias and Alzheimer’s Disease.

Hospice care, in general, is available to our loved ones only when they are in the terminal (six months or less until death) stage of an illness.

The difference between hospice care and home health or palliative care is that while home health and palliative care are curative (treatment to stabilize and/or improve to extend life), hospice care is comfort (treatment to provide physical comfort while the terminal disease takes its natural course to death without intervention).

The requirements for admission to hospice care under a dementias/Alzheimer’s Disease diagnosis are essentially that our loved ones have already knocked on death’s door and the door is slightly ajar:

Must exhibit two of the following:

Ability to speak is limited to 6 words or fewer
Ambulatory ability is lost
Cannot sit up without assistance
Loss of ability to smile
Cannot hold up head

Must exhibit all of the following:

Inability to ambulate independently
Inability to dress unassisted
Inability to bathe properly
Incontinence of urine and stool
Inability to speak or communicate meaningfully

Failure to thrive in the following areas:

Clinical:

Progression of disease documented by symptoms or test results
Decline in Karnofsky Performance Score
Weight loss supported by decreasing albumin or cholesterol

Dependence in two or more of the following:

Feeding
Ambulation
Continence
Transfers
Bathing and dressing
Dysphagia (difficulty swallowing) leading to inadequate nutritional intake or recurrent aspiration
Increasing emergency visits, hospitalizations, or physician follow-ups related to their primary medical diagnosis
A score of 6 or 7 in the Functional Assessment Staging Test (FAST) for dementia
Progressive stage 3-4 pressure ulcers in spite of care

Because of the prevalence of comorbid diseases – such as heart disease, unmanageable high blood pressure/strokes, diabetes, and organ failure (kidney failure is quite common in these three diseases because they affect the kidneys directly either in the disease itself or in the treatment of the disease) – that exist, especially in our elderly loved ones, alongside of dementias and Alzheimer’s Disease, it is very likely that admission to hospice care will be for one of the comorbid diseases instead of because of dementias and Alzheimer’s Disease.

In my mom’s case, we transitioned to hospice care under heart disease when Mama was having chest pain regularly. The palliative care nurse suggested that we go to the emergency room one morning when the pain was particularly acute and Mama said “No,” and I backed her up (Mama and I had, a few months earlier, according to her wishes, agreed on no more hospitals). Mama had the major heart attack that would, 12 days later, result in her death the following night of the day after she was admitted to hospice.

When our loved ones with dementias and Alzheimer’s Disease are admitted to hospice care at home, several things are supposed to happen (I will talk later about researching and deciding on hospice care before you need it since you do not have to use the hospice care of the care agency providing home health and palliative care).

The first thing is that a comfort kit is overnighted to the home for administration when needed (and if a hospice nurse is not immediately available to provide the care). Included in the comfort kit are basics like liquid morphine (hospice will provide more if needed), mouth swabs (keeps saliva from collecting mouth and throat), and Atropine drops or Levsin (minimizes wet respiration).

Hospice also has a two-week supply of all medications that our loved ones with dementias and Alzheimer’s Disease are taking specifically for the disease they are admitted under overnighted to the home.

A care team consisting of nurses, a social worker, a chaplain, volunteers to sit with our loved ones if we need to get groceries, and certified nurse assistants (CNAs) to help with daily hygiene care is also put in place to assist in supporting our loved ones and their families along the journey to death.

Our loved ones and we can chose which of these non-medical care team members to utilize. In Mama’s case, for example, we had a spiritual inner circle of longtime friends-who-were-family who provided, along with God, our sole spiritual support. We also took care of daily hygiene on our own.

Our experience was less than optimal in the other areas (including nursing until a home health nurse happened to fill in for the hospice nurse the last few days of Mama’s life).

In fact, our experience was so bad that I had decided to switch to another hospice care agency two days before Mama went into her death sleep (for my readers in the Tri-Cities, Tennessee, area, please email me at goinggentleintothatgoodnight@gmail.com for details on the various hospice providers in the area and which one I was going to change to on the recommendation of home health nurses I trusted).

Nursing visits should be frequent, but will increase to daily as death for our loved ones with dementias and Alzheimer’s Disease draws closer.

After death, the hospice nurse will be our first contact. They will notify the funeral home, clean up and dress (you can choose to assist or not in this process – I assisted with Mama because it was a way that I could show her respect and maintain her dignity) our loved ones, and take care of the paperwork for the death certificate.

After the funeral home picks up our loved ones, the hospice nurse will, with our assistance, document, dispose of and destroy all the medications provided by hospice, including any remaining comfort care medications.

Logic would seem to indicate that hospice care team members are sensitive, gentle, and supportive. However, in many cases, none of those things are true.

I did my homework on hospices before Mama needed hospice care. I asked friends of mine who were nurses involved in elderly care for their recommendations since they dealt with all the hospice agencies in the area.

However, one of the caveats I found is that hospice agencies can deal differently with medical professionals (i.e., better) than with family members of loved ones who are in need of hospice.

When I talked to the first hospice agency that had been recommended to me, the first words out of the director’s mouth, before I’d said much more than my name, were “We’re not a babysitting service!”

The nastiness in her tone and what she said took me totally aback. Even looking into hospice care as an option is emotionally and mentally tough because it means we realize that time for our loved ones with dementias and Alzheimer’s Disease is short and finite and we’ve accepted the reality of rapidly-approaching death.

Even though there’s a rational, logical, objective component in that realization, the emotional and mental component of wrapping our heads around it isn’t so cut and dry, and a little empathy, compassion, and gentleness in the recognition by a hospice care agency is not unreasonable to expect.

The reason is that the first contact we as caregivers and advocates for our loved ones make to a hospice care agency leaves an impression on us as to the kind of care that agency will provide for our loved ones. If they treat us badly, then it’s safe to assume that is the quality of care that our loved ones with dementias and Alzheimer’s Disease will receive.

I crossed the first hospice care agency off my list simply because of those first words out of the director’s mouth to me.

The hospice care agency that Mama and I ended up with was not the one I wanted because I’d had a similar bad first contact with its director. However, the hospice care unit was in the same provider that we had received home health care and were receiving palliative care from and the hospice care director showed up with the palliative care nurse on the day that Mama was having acute chest pains.

The director of hospice care said it was time to admit Mama to hospice for heart disease and I knew at that point that I didn’t have the luxury of time to get another hospice care agency lined up and on board, so I did what we needed to do for Mama, despite my strongly negative impression from my first meeting with the hospice care director.

For the first eight days Mama was under hospice care, she and I were pretty much on our own. The only real support we got was through a couple of phone calls to the 24/7 medical line.

It was not until a home health care nurse (I knew he was a home health care nurse and he confirmed it when I asked him – the night and day difference in care for Mama and support for me was that obvious) from the agency filled in for the hospice nurse who was finally supposed to visit Mama showed up four days before Mama died that I had any confidence that I had made the right decision by switching Mama to hospice care.

I share this personal experience because it’s not as unusual as you might think. I’ve heard similar stories from other people with other hospice care agencies in other parts of the United States and the world.

That’s why you need to know that, if our loved ones with dementias and Alzheimer’s Disease have a longer time frame to death than my mom had, you have the ability and the choice to fire a hospice agency that is not working, whatever the reason(s).

Hospice care is designed to be comfort care – and that includes good support for caregivers and the family – and if that is not the outcome for our loved ones and us, then that is unacceptable and we have the freedom to switch to an agency who does provide what a hospice care agency is supposed to.

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

Sep1

In “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.

Undermining.

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.

Pessimism.

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.

Ignoring.

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.

Need 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.

Questioning.

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.

Being 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

Aug29

Communication – 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.

Being 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.

Interrupting.

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.

Provoking.

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.

Contradicting.

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.

Expecting 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.

Talking 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?

Aug28

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.

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

Jul31

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 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.

Going Gentle Into That Good Night – the blog is a finalist in the SeniorHomes.com Best Senior Living Awards 2014

Apr30

And my blog – “Going Gentle Into That Good Night” (http://atomic-temporary-53681440.wpcomstaging.com) – is a finalist too.

Once again, I thank everyone who has voted and ask anyone on my friends’ list who hasn’t to at least take a look at the blog (http://atomic-temporary-53681440.wpcomstaging.com).

Even if you don’t need this information personally, someone you know – a friend, a family member, or a colleague – needs it.

Everyone – and that includes all of us – even if not right here, right now, will be touched personally by the issues of dementias, Alzheimer’s Disease, and caregiving.

I have been through it personally. This blog is not an academic exercise.

It is not, like a lot of the dementias and Alzheimer’s Disease blogs that post incessantly on a daily basis, an impersonal web bot scouring of the internet for things that might be related.It is not the sanitized and sterile posts that you’ll find on the “official” dementias and Alzheimer’s Disease web sites.

Instead, you’ll find real-world, understandable, and practical information AND solutions about these diseases. I talk about topics that no one else talks about – do a search on “lifestyle dementia” on my blog and you find information you need even if dementia and Alzheimer’s Disease has never entered into nor been a part of your personal experience – because I want to make sure everyone is educated about the many factors that can and are leading to this burgeoning neurological epidemic.

Going Gentle Into That Good Night is a finalist in the SeniorHomes.com Best Senior Living Awards 2014.

The Rare Dementias: Corticobasal Degeneration (CBD)

Apr23

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.

These 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.

When 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.

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