Tag Archive | Lewy Body dementia

“To Sleep; Perchance to Dream:” Dream Research That Could Provide Insights Into R.E.M. Sleep Behavior Disorder and Lewy Body Dementia

There seems to be a lot of current effort going into researching into what happens neurologically while we sleep.

what-dreams-may-comeHowever, this article from Huffington Post that lists nine facts about dreams caught my interest, especially in light of my experience with my mom’s Lewy Body dementia and R.E.M. sleep behavior disorder.

I think this research could give some good insights into this particular facet of Lewy Body dementia, which always fascinated me and intrigued me to watch and listen to when Mama was experiencing it.

The last movie Natalie Wood made before her death in 1981 was a forgettable movie, despite a high-profile cast that included Christopher Walken (who has the creepy eyes of a villain, no matter what character he’s playing) and Louise Fletcher, called Brainstorm.

The movie is about a bunch of scientists who are trying to develop a device that will record everything happening in someone’s brain so that someone else can fully experience the same thing right down to the emotions and physical sensations (much like the virtual reality simulators we have today).

Louise Fletcher’s character is wearing the device when she experiences a fatal heart attack and all her brain activity is recorded.

After her death, Christopher Walken’s character uses the device to walk through Fletcher’s last minutes on earth, but almost dies in the process because he experiences the sensation of a fatal heart attack just like she did. The scientists decide the device is too dangerous and the project is scrapped.

While the movie was awful, the subject was fascinating because neurology is still so incomprehensible for the most part and unlocking all its secrets are, in my opinion, truly beyond the grasp of humans.

So any time we’re able to get just a sliver of a glimpse into how the brain works, it’s another piece of the puzzle, which we’ll never finish, that we can put into place.

There are some facts from the Huffington Post article about dreams that I found interesting, and may be a slightly-ajar door into understanding R.E.M. behavior disorder.

Our bodies react to dreams the same way they would if we were awake and experiencing those things and we dream in real time.

R.E.M. behavior disorder shows us that because we hear it and see it external in speech and motion and there’s a general sense of what’s going on the dream just by what our loved ones are saying and doing.

And as someone who dreams vividly most of the time, I can also attest that this is true.

If I’m falling in my dreams/nightmares (a little more on nightmares later), I literally feel the sensation of falling, which is what jolts me awake. All the fear in the dreams/nightmares is evidenced by my greatly-accelerated heart rate, profuse perspiration, and a long exhalation of breath that I began to hold just before I woke up.

The same thing happens when I’m running (these are my two default nightmares) away from something that’s either dangerous or chasing me. I jolt awake. My legs are tired, I am struggling to catch my breath, and I turn on a light to make sure nothing and nobody is there that I need to run from. All that happens in perhaps a second.

But the next fact about dreams that is fascinating comes into play here. I can’t go back to sleep because I am literally replaying the dreams/nightmares – I do this with other dreams, especially the ones that have meshed people and places and things that don’t belong together in them – too when I wake up and I can see them and go through them awake to try make sense of them or figure out why I dreamed them – almost frame-by-frame.

And there is a cadre of dreams and nightmares I’ve had over my lifetime that I recall just as vividly and in detail right now – I see them in my mind’s eye, if you will – as when I first had them, some of which go all the way back into early childhood.

temporoparietal-junction-rem-behavior-disorder-lewy-body-dementiaResearch has found that people who can recall their dreams regularly have a higher level of spontaneous activity, both in sleep and in wakefulness, in the medial prefrontal cortex and the temporoparietal junction of the brain than those who seldom remember their dreams. 

The temporoparietal junction of the brain is a key player in processing both information from within the body as well as external information, while the medial prefrontal cortex is responsible, in part, for cognition (strategy, decision, actions) in environments where uncertainty (awake or asleep) exists.

Alzheimer’s Disease research shows a greatly-reduced metabolism rate in the temporoparietal junction in general and it appears that all types of dementia affect the medial prefrontal cortex.

One of the primary areas where medial prefrontal cortex research has been done is in PTSD and there is strong evidence to suggest that PTSD is the result of neurological changes within the medial prefrontal cortex.

It would, therefore, probably not be surprising to see a higher incidence of dementias and Alzheimer’s Disease eventually occur within people who have been diagnosed with PTSD.

medial-prefrontal-cortex-rem-sleep-behavior-disorderMy thinking, though, of the higher activity in the temporoparietal junction and medial prefrontal cortex in those of us who usually can recall our dreams, is that it’s actually hypersensitivity of both of these parts of the brain, because research also shows a high sensitivity to sounds when “high recallers” are awake.

I am definitely much more sensitive to sounds, both in frequency, pitch, and patterns, than most people, to the point that they really bother me or I can’t be around them very long because they literally hurt (I can’t exactly explain that in tangible terms, but I experience an almost-unbearable intense sensation of both auditory and neurological pain).

Sudden sounds, whether they’re loud or not, make me jump. Extended exposure to high-volume sounds makes me physically uncomfortable. And a lot of sounds occurring simultaneously overwhelms me.

The impact of this particular research for our loved ones suffering from Lewy Body dementia and R.E.M. behavior disorder, because they do not remember their dreams at all, could lead to a closer look at the medial prefrontal cortex and temporoparietal junction regions of the brain and the role that Lewy Body proteins play in how they function.

A third fact in the Huffington Post article that I found intriguing is that nightmares aren’t always about fear, but other underlying emotions like failure, worry, sadness, or guilt. My guess is that we morph all those other emotions into whatever foundational emotion underlies all of them.

I believe that underlying emotion is the primary emotion we’re most familiar with, understand the best, and either know how to escape (in my case, running) or know it is what will finally do us in (in my case, falling off something high enough that it will kill me, usually the road or bridge that turns into a high-wire I realize I’m on over the middle of the stormy waves of an ocean with no way to get to either end safely and I look down, lose my balance, and start falling).

The last fact I’ll discuss about dreams surprised me because I’ve never heard anyone say this out loud, although I’ve experienced it. You can die in your dreams and live to tell about it.

I never died in my dreams, always waking up before inevitable death, until I was in my late 20’s.

I clearly remember my first dying dream and the sensation of knowing I was dying and then actually, in what seemed like slow motion, going through the process of dying.

How I died was not the way I would ever die in real life, but what I remember most was that once I realized I was dying, it wasn’t scary. In fact, it was, although what killed me was extremely violent, peaceful and easy, with the last sensation I had being one of relief. 

I’ve died on a regular basis in my dreams since then, but the most striking similarities among these dying dreams are that they aren’t scary and there is a profound sense of relief before it all just fades to black.

I suspect because death has been on the doorstep of my life – not me personally, but with my dad first and then my mom – since my late 20’s, the dying dreams are my way of coping with that.

I also suspect that because they haven’t been traumatic experiences for me, they equipped me to better handle the dying processes of both my parents.

And they’ll continue to equip me to handle well the inevitable conclusion to my own life whenever and however it comes.

After all, dreams are just another part of the incredible, albeit mostly out of the reach of humans, complex neurological system of reasoning, thinking, understanding, and responding that our Creator endowed us with. 

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

Kay Bransford and I seem to be on the same page a lot these days, but I see that we seem to be the only ones willing to tackle these subjects, so I guess we will keep sounding the drums that all of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

It seems to me that the very thing we try most to avoid thinking about, talking about, planning for is the very thing that will eventually happen to us all. And that is death.

Denial is, in my opinion, stronger and more pervasive in this area of life than in any other. “If I don’t think about it, then it isn’t real” seems to be the underlying thinking of this denial. I’m here to tell you that all the denial in the world won’t take away its inevitability of happening.

None of us, except those who chose to usurp God’s will and end their own lives, know how or when we’re going to die.

I believe most of us assume it will be quick and instantaneously, but the reality is that, in all likelihood, most of us will probably have a period of decline in which we will need help handling our financial, legal, and medical affairs before we take our last breaths.

And, after we take our last breaths, someone will have to take care of getting us buried and ending our financial, legal, and medical status among the living.

Who would that be for you? Yes, you, the one who is reading this post. Do you know? Does that person know? If that person knows, have you made this as easy as possible for him or her by doing your part and making sure he or she has everything he or she needs to do what needs to be done?

Or, because you don’t want to think about it or talk about, will that person have the burdensome responsibility of trying to figure it out all on his or her own?

We say we don’t want to be burdens to our loved ones. By taking care of this, you and I – we – have taken a big step toward easing the magnitude of that burden that, if we live long enough, will be shouldered by our loved ones.

I did my first will and living will shortly after I turned 21. I had just graduated from college, but not before having a very serious car accident (one that I miraculously survived with some significant injuries, but nothing like what I should have suffered) just before I graduated.

I’d never been that close to being face-to-face with death before, but it made me realize that I needed to make sure that my affairs – and they were paltry in those days but even then I had life insurance – were in order for the ones I’d leave behind.

From that point on, I have been meticulous about keeping my will up-to-date, the beneficiaries on my insurance policies up-to-date, and all the information my executor will need to take care of things up-to-date. I added a DNR to my medical wishes about 20 years ago, I got my cemetery plot 15 years ago, and I wrote out my funeral service and burial wishes about 10 years ago. 

Additionally, my executor has updated access and account information to everything online and offline to finish up my earthly affairs when I’m gone.

preparation-death-alzheimer's-disease-dementias-age-related-illnessesThis, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.

Mama used to worry that something would happen to me (i.e., that I would die before she did) and then about what would happen to her. There were times in our lives together that could have been a possibility, but I always reassured her that I’d be there with her to the end. And I was by the grace of God.

Of my parents, Daddy was a paradox when it came to this subject. On the one hand, he had life insurance that would take care of Mama after his death and he insisted, in the year before his death, that Mama get her own checking and savings accounts and get credit cards in her name only.

On the other hand, there were other areas in which he had great difficulty facing his mortality. I remember Mama suggesting that they start getting rid of clothes and other things they weren’t wearing or using anymore and Daddy’s response: “the girls can take care of that.”

The will that Daddy had in effect, until shortly before his death, was the one that he had drawn up just after he and Mama adopted us. None of the information was pertinent or relevant anymore.

After much and extended (I’m talking a couple of years) discussion between Mama and him, they finally went to a lawyer, about six weeks before he died, to have a current will drawn up.

Mama was just the opposite. Somehow, I think all the deaths of close and beloved relatives in her early years made the inevitability of death more real to her. She, primarily, during our growing up years, talked on a regular basis about what would happen to us if she and Daddy died and how we needed to take care of each other and be good kids so the road without them would be easier for us.

Not long after Daddy died, she and I sat down together (I was now checking in daily and helping her navigate through some of the things that Daddy had done and offering advice and assistance as she needed it) and she told me what she wanted – and didn’t want – as far as end-of-life wishes.

We went to an attorney together and she did a will (which she later changed to a revocable living trust), living will, and all the POA paperwork. I had copies, she had copies, and she put copies in a safety deposit box at the bank.

At that time, I didn’t need or want knowledge or access to her financial accounts, but as time went on, she needed more of my help in dealing with them, so she gave me access to get into the accounts and help her (we always sat down and did this together until she wasn’t able to anymore) keep up with bills and what she had. 

By doing this with me, Mama made things much easier for me when the time came that I had to step in because she couldn’t do it.

I can’t thank Mama enough for her foresight with this gift. Instead of having to focus on everything brand new coming at me at once, I could focus on what was most important, and that was Mama: loving her, caring for her, being there for her.

The last couple of months Mama was alive, we’d be sitting close, holding hands, and talking and suddenly she’d say “I don’t want be a burden on you,” with tears rolling down her cheeks. I’d squeeze her hands and pull her closer in a hug, kissing the tears away from her cheeks, saying, “Mama, you’re not a burden to me. I love you unconditionally. I wouldn’t be anywhere else doing anything else but right here doing this with you.”

Mama would relax in my embrace and I would hold her tighter as I said these words because they were true and we both recognized that they were true, but most of all, I recognized how easy Mama had made things for me by equipping me with what I needed to step in easily and take care of the routine things so that I could save my energy, my focus, and my love for taking care of her.

The Layperson’s Guide to Early-Onset Dementias

There are several types of common early-onset dementias. Early-onset dementias are categorized as dementias where the onset of symptoms is prior to age 65. These dementias can occur as early as the 30’s, but more typically become symptomatic in the 40’s and 50’s.

Early-onset dementias, unfortunately, are still off the main grid for medical staff – a classic instance of fixed expectations that dementias won’t be an issue for a person until after age 65 – and our loved who are diagnosed with early-on dementias face challenges that our older loved ones who are suffering with these diseases don’t face. These include:

  • Difficulty getting a correct diagnosis
  • Loss of employment and income
  • Difficulty getting Social Security Disability Insurance, Medicaid, and other employment-related disability insurance
  • Loss of health insurance and high-out-of-pocket costs for medical care
  • High out-of-pocket costs for long-term care
  • Lack of appropriate medical care, residential care, and community services (all of these are geared toward an older population)

Early-onset dementias typically are harder to diagnose because other than the dementia systems, sufferers are usually healthy, active, and aware there is a problem.

Additionally, the symptoms of early-onset dementias usually don’t have memory impairment as the predominant feature. Most often, behavioral and personality changes occur first, so usually the first type of treatment is psychiatric instead of neurological.

The causes of early onset-dementias fall into three categories: random, genetic, and lifestyle.

Random early-onset dementias are just that. There’s no concrete link to a cause. My opinion is that few of these in this category are actually random, but the causative issue(s) have not been identified yet.

Genetics plays an important role in certain early-onset dementias (and, although the scientific community has overlooked or disregarded the familial aspect of elder-onset dementias, it appears very likely, from observation, that if there’s a family history of elder-onset dementias, there may be a genetic predisposition for development of elder-onset dementias in subsequent generations).

Three genes are known to have mutations in the case of some sufferers of early-onset dementia, Alzheimer’s type (symptoms related to these genetic mutations usually begin in the 30’s and 40’s):

  • Amyloid precursor protein gene (APP) on chromosome 21
  • Presenillin-1 (PSEN-1) on chromosome 14
  • Presenillin-2 (PSEN-2) on chromosome 1 

We’ve talked extensively here about lifestyle dementias with regard to management of health (blood pressure and blood sugar) and substance abuse, as well as with regard to what we eat and how we live daily life. Some of the early-onset dementias we will talk about here can be directly attributed to lifestyle.

There are several types of early-onset dementias.

At least 1/3 of all sufferers diagnosis with early-onset dementia have Alzheimer’s Disease (remember that Alzheimer’s Disease is a type of dementia, but is not inclusive of all types of dementia, just as all photocopiers are not Xerox photocopiers and all facial tissues are not Kleenex facial tissues).

Onset symptoms include progressive and episodic memory loss, as well as visuospatial and perceptual deficiencies, but intact language and social functioning.

early-onset dementia, Alzheimer's type, Pat SummittThis type of early-onset dementia is more common in women than men. Once symptoms appear, the duration of the disease averages eight years.

A recent example is the 2011 diagnosis of former University of Tennessee women’s head basketball coach, Pat Summit, who was diagnosed with early-onset dementia, Alzheimer’s type, at age 59. Coach Summitt stayed with the team one more season, but was not actively coaching that season.

Coach Summitt retired in 2012 and has begun the Pat Summit Foundation to raise Alzheimer’s Disease awareness.

"Still Alice" by Lisa Genova - early-onset dementia, Alzheimer's typeThe novel, Still Alice, written by neuroscientist Lisa Genova, gives a scientific, compassionate and compelling look from the inside out of a 50-year-old Harvard psychology professor as early-onset dementia, Alzheimer’s type enters and progresses through her life.

Since the publication of Still Alice in 2007, Genova has continued her work with bringing the neuroscience of all types of dementias in the same compassionate and compelling style of her first novel through subsequent books and through documentaries produced with her husband, who is a filmmaker.

MRI-vascular-dementia-diffuse-white-matterThe second most common type of early-onset dementia is vascular dementia. Vascular dementia can occur because of:

  • Multiple cortical infarcts (small areas of tissue that have died from the lack a blood supply) that are most often caused by transient ischemic attacks (TIA’s) or silent strokes and characterized by stepwise deterioration of cognitive function
  • Small-vessel disease, resulting in a more subtle decline of cognitive function
  • Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL)
    • Rare cause of early-onset subcortical strokes and dementia
    • Caused by a mutation of Notch 3 gene on chromosome 19
    • MRI shows diffuse white matter lesions on the cerebral hemispheres, especially in the anterior temporal lobes and external capsules

With early-onset vascular dementia, there are usually lifestyle factors involved such as uncontrolled or undetected high blood pressure and an unhealthy diet. Recent scientific research has also linked high cholesterol levels with the development of vascular dementia.

frontal and temporal lobes function FTD early-onset dementiaThe third most common type of early-onset dementia is frontotemperal dementia (FTD), also known as Pick’s Disease, which affects the frontal and temporal lobes of the brain. FTD usually has an onset between the ages of 45 and 65. Its average duration is eight years. 

There are three types of FTD: behavioral variant FTD, semantic dementia, and primary progressive (also known as progressive nonfluent) aphasia.

In about half the cases of FTD, there is a positive family history for the disease, indicating a probable genetic link (although researchers have not yet identified the genetic mutation).

FTD can co-occur with motor neuron diseases (ALS, also known as Lou Gerhig’s Disease, is an example of a motor neuron disease), but only about 10% of sufferers of only motor neuron diseases develop dementia, resulting in a very aggressive course of the illness.

FTD presents differently from early-onset Alzheimer’s Disease and early-onset vascular dementia because the first symptoms involve changes in personality and social conduct while memory, perception, and visuospatial skills remain unchanged.

The most common indicators are:

  • Behavior disturbances
  • Personality changes
  • Decreased motivation
  • Reduced empathy
  • Impaired planning
  • Impaired judgment
  • Speech and language difficulties

As FTD progresses, other symptoms become apparent:

  • Difficulty behaving appropriately in new and unfamiliar situations
  • Loss in inhibitions (disrobing is not uncommon)
  • Loss of social skills
  • Emotional outbursts
  • Impulsivity
  • Executive function deficits
  • Decreased verbal fluency
  • Compulsive or repetitive behavior
  • Lack of insight
  • Self-neglect
  • Inappropriate sexual behavior

The semantic dementia form of FTD includes symptoms of:

  • Difficulty with correctly naming objects (people, places, and things)
  • Impaired understanding of the meaning of words
  • Inability to understand substitute words

However, in this form of FTD, speech remains fluent and cognition remains intact. MRI scans show more atrophy of the anterior temporal lobe than the posterior temporal lobe.

The primary progressive (progressive nonfluent) aphasia form of FTD is characterized by:

  • Progressive decline in all language skills, with no other cognitive deficits
  • Increased difficulty with speech and speaking (by the end of the disease, most sufferers don’t speak at all)
  • Speech and speaking is not fluent and requires a great deal of effort

MRI scans show predominant atrophy of the left perisylvian region of the temporal lobe.

The fourth most common type of early-onset dementia is Lewy Body dementia. I’ve included the link to my post about Lewy Body dementia for a full description, but will include a brief summary of the dementia’s Lewy Body Protein - Lewy Body dementiaprimary symptoms:

The fifth most common type of early-onset dementia is Wernicke-Korsakoff Syndrome (alcohol-related dementia). This is a lifestyle dementia, brought on by long-term, heavy alcohol consumption.

wernicke-korsakoff dementia (alcohol-related dementia)

Characteristics of Wernicke-Korsakoff Syndrome include:

  • Damage to the limbic structures and frontal lobes
  • Memory impairment
  • Executive functioning impairment
  • Autobiographical memory is frequently affected resulting in confabulation (making up stories)
  • Memory loss stops where it is when drinking stops (damage already done remains)

As shown by the MRI scan above, there is general cortical atrophy along with damage to the frontal, parietal and cingulated regions of the brain, with the majority of the damage occurring in the frontal lobe.

There are two other less common types of early-onset dementia that we’ll discuss.

One is Huntington’s Disease. As this genetically-inherited disease progresses, dementia develops.

MRI Huntington's DiseaseEveryone is born with this gene. However, in Huntington’s Disease, an inherited mutated copy of this gene (on chromosome 4), produces a defective form of the huntingtin protein that causes degeneration and death of the neurons, especially in the center of the brain. 

Because this gene is a dominant gene (as opposed to a recessive gene), everyone who inherits the mutated copy of the gene will, at some point, develop Huntington’s Disease.

Symptoms typically appear between ages 30 and 50, but it can begin at a very young age or appear in the very elderly. Primary symptoms include:

  • Lack of muscle coordination in the arms, legs, head, face and upper body
  • Progressive decline in thinking and reasoning skills, including memory, concentration, judgment and the ability to plan and organize
  • Mood disturbances, including depression, anxiety, anger, and irritability
  • Obsessive-compulsive behaviors

The last type of early-onset dementia, which is extremely rare, is Creutzfeldt-Jakob Disease (CJD). CJD is characterized by rapid neurological degeneration. It is always fatal, and death usually occurs within six months to a year of onset.

CJD belongs to a class of human and animal diseases called transmissible spongiform encephalopathies (TSEs), because the infected brain looks like a sponge. The average age of onset for CJD is 60.

“Mad Cow Disease” is the bovine equivalent of CJD (although it tends to affect younger people, with the average age of onset being 26). 

There are three types of CJD:

  • Sporadic (no known cause) – accounts for about 90% of cases
  • Inherited (family history of the disease) – accounts for 5-10% of cases
  • Acquired (transmitted by exposure to brain or nervous system tissue, usually through certain medical procedure) – accounts for less than 1% of cases

Creutzfeldt-Jakob Disease MRIThe symptoms of CJD include:

  • Rapidly progressive dementia
  • Problems with muscular coordination
  • Personality changes, including impaired memory, judgment, and thinking
  • Impaired vision
  • Insomnia
  • Depression
  • Lethargy

As CJD progresses, mental impairment becomes severe. Sufferers often develop involuntary muscle jerks (myoclonus), and they may go blind.

Eventually, they lose the ability to move and speak and become comatose. Pneumonia and other infections often occur as well, and they generally end in death.
 

An Overview of the Most-Commonly-Used Medications to Treat Symptoms in Alzheimer’s Disease and Dementias

There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline. 

There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.

The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.

seroquel-namenda-drugs-alzheimer's-disease-vascular-dementia-lewy-body-dementia-going-gentle-into-that-good-night

The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.

So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.

I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.

I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.

I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.

How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.

It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.

drugs-alzheimer's-disease-dementia-going-gentle-into-that-good-nightAll the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.

Since Mama was experiencing hallucinations, paranoia, and delusions, the psychiatrist prescribed SeroquelXR (50 mg twice a day), Citalopram (40 mg a day) for anxiety, Namenda (generic: memantine) for cognition enhancement, Exelon (24-hour-patch/4.6 mg – this is also available in oral form since the patch can cause skin irritation) for cognition enhancement, and Clonazepam (.25 mg/PRN) for extreme agitation as the dementia and Alzheimer’s Disease medication regimen for Mama’s symptoms.

And it worked.

I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.

With the exception of SeroquelXR.

Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).

I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.

So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).

Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.

Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.

Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.

I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.

So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back. 

They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.

These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.

In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.

I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.

We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them. 

So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.

There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at goinggentleintothatgoodnight@gmail.com. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.

Lessons We Learn from Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

In Nick Norton’s blog post, “10 Things Caregiving Taught Me in 2013,” he lists some of the things he learned from caregiving, along with his mom, for his grandfather who suffered from Alzheimer’s Disease (his grandfather died in June 2013). 

Several of Nick’s lessons resonated with me from my own experiences caregiving for Mama the last several years of her life as she suffered with congestive heart failure, vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. The lessons I learned were ones that I could not have learned any other way or through any other of life’s experiences.

That makes them priceless, although I would not have ever wanted Mama to have to go through what she went through so that I could learn them. However, I consider these lessons that I learned as Mama’s last and lasting gifts to me, giving to and helping me, as she wanted to and did with so many other people throughout her time on this earth.

One of the lessons Nick and I both learned is that until you’ve been a caregiver for a loved one with dementias and Alzheimer’s Disease, you will never be able to fully understand what it entails.

In the caregiving realm, it is a unique experience. Not only are you dealing with normal aging issues and health concerns, but you are also actively losing a family member – a mentor, a matriarch, a patriarch, a counselor, a beloved friend – while he or she is still alive (in these neurological diseases, we actually lose them twice).

Unlike caring for and raising children, our loved ones with dementias and Alzheimer’s Disease regress instead of progress. Their communication issues increase instead of decreasing. Their complete dependence grows instead of declining. Their vulnerabilities, fears, and anxieties of a lifetime on this planet come back around in full force as their worlds get smaller instead of the dissipation a child experiences as his or her world gets bigger. Their suffering will never get better. Instead, it will increasingly get worse. There’s no way to fix it, no hope for improvement, no expectation of positive changes.

It is truly a 24/7 responsibility. There is no down time. And each journey is unique, so as caregivers we are constantly responding to and adapting to surprises, to the unexpected, to the unknown. It can be both extremely mentally and physically exhausting.

Lessons Learned From CaregivingThe whole experience can be a very difficult thing to actually wrap your mind around, to alter your thinking to adapt to, to, in short, accept and roll with on an even keel. In my experience, this is next to impossible for many people to do, deal with, and stay with for the duration.

That ability is one of the many things that makes caregiving for our loved ones with dementias and Alzheimer’s Disease unique. And it makes those of us who choose to do this unique.

Another of the lessons that Nick learned was to pray regularly. Although I’ve always prayed regularly, it was through caregiving for Mama that I really began to understand and practice Paul’s exhortation to pray without ceasing and Peter’s reminder to cast all my cares on Him.

My prayers became more continual, more deeply personal, and my relationship with God more intimate and more strong, as it remains and continues to grow in to this day and I intend for it to remain and grow in for the remainder of my life.

And looking for the joy in life was another lesson that, like Nick, I learned while caregiving for Mama. There were moments that we had the privilege of sharing together during those years that brought both of us joy and still make me smile when I think of them.

However, I find it much more difficult to find the joy in life in general now that Mama’s gone because it seems that life has gotten a lot harder for me since Mama’s death.

It’s proven to be extraordinarily difficult to find a smooth, seamless, and meaningful transition to the next phase of my life in the absence of being needed, useful, and worthwhile while caring for Mama.

These days,I frequently ask God that if I don’t have any more value in this life if He will just mercifully end it and give me the peace of death until the next phase He has planned for me (so far, His answer has been “no” and I have to accept that until He says “yes”).

But I still try to remind myself to look for joy, even if seems elusive and gone for good, at least in this phase of life for me.

There are life lessons each of us as caregivers for our loved ones with dementias and Alzheimer’s Disease will learn. Let’s remember not to get so caught up in the day-to-day, some of which will be sad, trying, frustrating, and full of epic fails, that we miss the bigger picture of what we’re being given the unique opportunities to learn and grow from.

The Implicit Agreement We Enter Into As Caregivers for Our Loved Ones with Dementias and Alzheimer’s Disease

For many of us as caregivers for our loved ones with dementias and Alzheimer’s Disease, we choose to enter into the agreement to care for them willingly, without any compensation (we don’t expect it), aware that, in the majority of situations, we will carry the responsibility with little to no help from others and that it’s a lifetime 24/7 obligation that we’re inextricably bound to until our loved ones die. 

trust honesty integrity alzheimer's disease dementiaWe also enter into an implicit ethical agreement with our loved ones when we assume responsibility for their care. We promise implicitly that we will be honest and trustworthy, that we will be supportive, that we will be comforting, that we will be loving, and that our loved ones will want for nothing.

As our loved ones with dementias and Alzheimer’s Disease – parents, grandparents, etc. – did for us when we were babies and children, we promise that, with as much equanimity as possible, we will bear the burdens, carry the worries, handle the vacillations of change, and never abandon them. 

The way I always look at this is that our loved ones (our caregivers) when we were babies and children didn’t know what they were getting into. They could not have possibly imagined or dreamed the things we would say, we would do, and sometimes the trouble and mischief we could find without even trying.

And, yet, for most of us, they hung in there with us, even though it was sometimes hard, sometimes maddening, sometimes frustrating, and sometimes almost unbearable (especially in the teenage years). They didn’t put us away some place, complain about the fact that no one in their families was helping out, or scream and rant and rave about us to other people (well, maybe they did to our friends’ parents when they were alone and traded horror stories about all of us, but we never saw any of evidence of that in their treatment of us).

By agreeing to be caregivers for our loved ones with dementias and Alzheimer’s Disease, we agree to do for them what they did for us. To complete the circle of life as we switch roles with them as they begin their exit from the stage of life.

How well are we living up to our agreement in all the areas that we agreed to?

love dementia alzheimer's diseaseSometimes it’s necessary to just step back and evaluate the agreement we made, why we made it, and whether we are fulfilling the terms that we agreed to.

I know these diseases take a heavy toll on more than just our loved ones. I walked this journey side-by-side with my mama for several years, at first not realizing fully what Mama was experiencing, and then once I did, dealing with it and Mama according to the terms I’d agreed to.

I had my moments of anger, frustration, impatience, and fear, but overwhelmingly what I experienced was fierce protectiveness, deep compassion, strong empathy, and unconditional love. No matter what I was going through, I knew what Mama was going through was worse. The more fragile her own position became, the stronger mine became to be her comfort, her safety, and her rock – even if, at times along the way, she wasn’t, because her brain was betraying her, able to recognize that.

It was never about me. It was always about Mama. Keeping that at the front of my mind and heart at all times helped me be there 100% all the time to do whatever needed to be done to help her.

This is an imperative mindset for us as caregivers. It’s a rare mindset because it has largely disappeared in the general population that has wholeheartedly embraced the “it’s all about me” mindset.

We live in a society that has become increasingly self-absorbed, self-centered, selfish, and whiney when even the littlest of things don’t go our way. We live in a society that is easily offended and gets hurt feelings on the turn of a dime, that is quick to give up on things and people when the going gets a little rough, that is all too ready to walk away from anything that poses a threat to our comfort zone or might require a little extra work to sustain. (The irony is that this same society expects from us the things it is unwilling to be, do, or give.)

selflessness dementia alzheimer's diseaseBut, as caregivers, we have chosen to take the road far less traveled by. The one that says we’re in it for the long haul. The one that says our skins are thick enough that we learn not to take the effects that our loved ones with dementias and Alzheimer’s Disease exhibit personally. The one that says we love and we care to the end. The one that says we never walk away.

It’s not a road that many are willing or able to walk. But for those of us who have walked it and are walking it to the end, we find that the rewards and the lessons and the love we acquire as part of the journey are priceless. And our loved ones find in us relentless champions, unsung heroes, faithful friends, and beloved spouses, children, grandchildren, nieces and nephews who show them we love them by who we are and what we do.

So let’s never forget the promises we made, the pledges that we made, the trust, integrity, and honesty that we committed to be worthy of when we chose to care for our loved ones. Always remember that they are counting on us to honor those and if we fail them, then who will step in and fill the gap?

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Author’s note: I originally posted this in June 2013, but I will now be reposting this every month, because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses (“Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease“) offers a more comprehensive list of the areas in which we can offer help and support to our loved ones).

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Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as  un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

Living willA living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

DNR (Do Not Resuscitate)A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

hospitalizationBecause of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations. 

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it. 

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.