“War is hell.” General Sherman Tecumseh Sherman (1820-1891), who led Union forces through the South during the United States Civil War, made not only this insightful observation on the nature of fighting wars, but also added “War is cruelty, and you cannot refine it;…”
The ultimate purpose of war is malevolent: to maim, to injure, to destroy, and to kill to force one group of people to surrender to another group of people. Continue reading
In 1930, Katherine Anne Porter wrote a short story entitled “The Jilting of Granny Weatherall” (click on the link to read the short story in a new window). When I first read this short story in high school, I had never heard the term dementia (my mom’s grandma was senile in her old age, but she was the only person I ever heard of being senile based on firsthand knowledge).
I found Granny Weatherall, an elderly woman whose reverie drifted simultaneously between the past and present as if they had become merged, interesting, but heart-breaking. And as she relived her past like it was the present, her story gave full meaning to her surname of Weatherall.
However, it wasn’t until my own mom started intersplicing her past into the present during her journey with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease that Granny Weatherall came back to the front of my mind. Upon rereading the story, I realized Granny Weatherall had some type of dementia.
In my book detailing acknowledging, recognizing, and responding to the steps of the journey we take with our loved ones through dementias and Alzheimer’s Disease, I again had Granny Weatherall on my mind as I wrote Chapter 10.
It’s a story I highly recommend for all caregivers with loved ones who have dementias and/or Alzheimer’s Disease.
How Porter had this kind of insight into the inner workings of how these neurological diseases manifested themselves internally – with Granny Weatherall – and externally – with her caregiving daughter – is a mystery, but Porter captures it perfectly and poignantly.
I think one of the things Granny Weatherall does for us as caregivers is that she reminds us that our loved ones were once vibrant, full of life, and they’ve seen a world of ups and downs that not only may we not be privy to, but that we can’t fully imagine or understand.
I believe another thing that Granny Weatherall does is to remind us of the fragility, the humanity, and the dignity of our loved ones. Her internal indignation at her daughter’s well-meaning, but clueless caregiving makes us take stock of our own caregiving in relationship to our loved ones.
And the last thing that Granny Weatherall does is to remind us that death is part of the circle of life and it’s often harder on those it leaves behind than those it takes.
There a lot of good lessons here. I hope you take some time to read “The Jilting of Granny Weatherall.” Porter’s a good writer, so the story moves well, but it gives us as caregivers an inside look at our loved ones that we may not have considered or even been aware of before.
William Shakespeare, the playwright, was one of the most intuitive and astute observers of the human race. A careful reading of his body of plays – especially the histories and the tragedies – show an author who intimately understood human nature and human folly at their very core manifestations.
In King Lear, one of Shakespeare’s most gut-wrenching plays, Shakespeare gives us an in-depth look at what dementia – and, most likely, based on the symptoms, Lewy Body dementia – looks like in action in his portrayal of King Lear.
From a big-picture standpoint, the play shows in close detail how dementia can destroy a family (and a kingdom), and it shows how family dynamics can hasten the destruction. It also shows how dishonesty with our loved ones with dementia is never acceptable.
The summary of King Lear is fairly straightforward. King Lear, a monarch in pre-Christian Britain, who is in his eighties and aware of his own cognitive decline, decides to abdicate the throne and split the kingdom among his three daughters, with the promise that they will take care of him.
The first sign of Lear’s dementia is his irrational criteria for how he’s going to decide which daughter gets the largest portion of the kingdom: not by their abilities, strengths, rulership experience, but by which one professes the greatest love for him.
His two oldest daughters are duplicitous and try to outdo each other with their professions of love for their father (they don’t love him, but they want the lion’s share of the kingdom).
King Lear’s youngest daughter, who genuinely loves her father and who is his favorite, gets disgusted with the whole thing and refuses to play the game.
King Lear, in a sudden fit of rage, then disowns his youngest daughter completely. When one of her friends, the Earl of Kent, tries to reason with the king, King Lear banishes him from the kingdom.
King Lear’s youngest daughter then marries the king of France and leaves King Lear in the hands of his two devious older daughters.
Both daughters are aware of King Lear’s vulnerability because of his cognitive decline and are intent on murdering him so that they can have everything without the responsibility of having to take care of him. They treat King Lear horribly in the process of formulating their scheme to end his life and be rid of him.
The youngest daughter comes back from France to fight her sisters, but loses and is sentenced to death instead.
While she is awaiting execution the two older sisters fight over a man they both want. The oldest sister poisons the middle sister, who then dies.
The man the two sisters were fighting over has been fatally wounded in battle and he dies (but he reverses the execution order of the youngest sister before he dies). After his death, the oldest sister commits suicide.
Meanwhile, the youngest sister is executed before the reversal order reaches the executioners. And King Lear, upon seeing his youngest daughter dead, dies too.
Woven throughout the plot are signs that King Lear has dementia, that he knows something is cognitively wrong, and we watch him actually go through the steps of dementia throughout the play.
King Lear exhibits deteriorating cognitive impairment, irrational thinking, sudden and intense mood changes, paranoia, hallucinations, and the inability to recognize people he knows.
Lewy Body dementia seems to be evident in King Lear’s conversations with nobody (he thinks he sees them but they aren’t there) and the sleep abnormalities that are brought out in the play.
A few poignant lines spoken by King Lear give us a glimpse:
“Who is it that can tell me who I am?”
“O, let me not be mad, not mad, sweet heaven
Keep me in temper: I would not be mad!”
“I am a very foolish fond old man,
Fourscore and upward, not an hour more or less;
And, to deal plainly,
I fear I am not in my perfect mind.”
“You must bear with me:
Pray you now, forget and forgive: I am old and foolish.”
Everyone around King Lear knows he’s not himself, including his deceptive daughters, who note after he disowns his youngest daughter, how bizarre his behavior was toward someone he loved so much and how quickly his temperament changed. King Lear see
As the play progresses, King Lear’s dementia continues to be revealed in his frequent rages against fate and nature, in his disregard for personal comfort or protection from the elements, and in his eventually having fewer and fewer lucid moments in which he recognizes people and knows who he is.
If you haven’t read King Lear in a while or you’ve never read it at all, it is an entirely different experience to read it now with the knowledge of dementia as a backdrop. It’s even more tragic than we even imagined.
Click below on the new infographic I created to see it in normal size.
I’ve just written and published my newest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
It is available in both paperback and Kindle versions.
I’ll include the short summary from Amazon I wrote for the book:
“This book looks comprehensively at all the steps that occur in dementias and Alzheimer’s Disease.
In my own experience with this and in counseling, supporting, and working with others who are going through these steps, I realized there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
I know that because the same questions get asked and answered over and over again.
My purpose is to ask those questions and answer them in a way that, first, makes sense, and, second, works for everybody involved.
I know. I’ve been on the caregiving side of the equation personally. There were no books like this when I did it, so I had to learn on my own and figure out what worked and what didn’t. I made mistakes. You’ll make mistakes.
But, in the end, my mom and whoever you love and are caring for, got the best we have to give and we can learn some pretty incredible and good life lessons along the way.
If you don’t read another book on this subject, you should read this one. I don’t have all the answers, but the answers I have learned are the ones that probably matter most.
Not just now, but for the rest of our lives.”
This book also includes the last step that we take alone without our loved ones: grief. I’ve been there and I’ve done that and although I will never not feel the grief on some level, I’ve learned some lessons that I know will help each of you.
There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline.
There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.
The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.
The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.
So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.
I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.
I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.
I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.
How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.
It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.
All the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.
Since Mama was experiencing hallucinations, paranoia, and delusions, the psychiatrist prescribed SeroquelXR (50 mg twice a day), Citalopram (40 mg a day) for anxiety, Namenda (generic: memantine) for cognition enhancement, Exelon (24-hour-patch/4.6 mg – this is also available in oral form since the patch can cause skin irritation) for cognition enhancement, and Clonazepam (.25 mg/PRN) for extreme agitation as the dementia and Alzheimer’s Disease medication regimen for Mama’s symptoms.
And it worked.
I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.
With the exception of SeroquelXR.
Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).
I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.
So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).
Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.
Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.
Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.
I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.
So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back.
They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.
These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.
In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.
I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.
We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them.
So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.
There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at goinggentleintothatgoodnight@gmail.com. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.
Today’s post will discuss visual and perceptual problems that are common in our loved ones suffering from dementias and Alzheimer’s Disease. These problems fall into three main categories: vision, perception, and hallucinations.
Vision problems occur as part of the normal aging process. However, because the brain plays such an important role in how and what we see, the aggregate damage from dementias and Alzheimer’s Disease exacerbates and disproportionately magnifies the normal age-related vision problems that older people develop.
Two common age-related vision problems are cataracts (clouding of the lens inside the eye that decreases vision) and macular degeneration.
The macula is located behind the eye in the center of the retina. Although the macula makes up just 1/20 of the entire retina, it is responsible for the sharp, clear, and undistorted detail of central vision, which enables us to read, recognize faces, drive a car, and watch television.
There are two types of macular degeneration. “Dry” macular degeneration is how age-related macular degeneration starts and drusen (German for “small dots”) begin to form in the retina around the macula. It is important to note that the presence of drusen does not necessarily mean that macular degeneration will eventually occur, nor does it mean future vision loss.
However, if drusen continue to form, then dry macular degeneration will occur. The good news is that the progression of this form of macular degeneration is very slow and noticeable visual impairments usually do not occur for several years. However, when they do occur, the same field of vision problems that sufferers of wet macular degeneration experience will be present.
“Wet” macular degeneration, on the other hand, is more serious and can result in immediate and severe vision loss. Wet macular degeneration occurs when blood vessels burst in the retina and fluid and blood leaks result in cell death.
While there is no treatment to reverse – although vitamin supplementation may help slow the progress – dry macular degeneration, there are very effective treatments to stop the fluid and blood leaks and prevent damage to the eye at retinal eye centers for wet macular degeneration. This is a serious vision condition that needs to be treated immediately.
This sequence of pictures and graphs (showing the distortion of central vision) shows what the progression of wet macular degeneration does to vision:
I bring these up because my mom had dry macular degeneration in one eye (her stronger eye) and wet macular degeneration, which we treated aggressively up until her death, in the other eye (her weaker eye) before she was diagnosed with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease.
And I know, with the damage to other parts of her brain from the dementias and Alzheimer’s Disease, the visual distortions caused by these common age-related vision problems were exaggerated.
It’s important to know this is not uncommon with our loved ones suffering from dementias and Alzheimer’s Disease, and is part of what makes the whole process a losing battle from the get-go.
One of the most noticeable visual distortions associated with dementias and Alzheimer’s Disease is characterized by sudden stops at door thresholds and on walking surfaces where there are delineated changes in color and consistency, such as going from a wood or tiled floor onto carpeted floor.
These are known as “visual cliffs,” and, interestingly, the same phenomenon is observed in infants as they begin to crawl. What causes these abrupt stops are abnormal depth perception and a fear of falling.
The ability to accurately perceive depth seems to erode in proportion with the increased damage to the brain caused by dementias and Alzheimer’s Disease.
An unexpected benefit of this, however, is that caregivers can use this visual distortion to help control wandering by putting “cliffs” (a two-inch piece of black tape) at the bottom of and on the thresholds of exterior doors. This is typically pretty effective.
Other common vision distortions include:
If we, as loving caregivers, can better understand the what and the why of the visuoperceptive difficulties inherent in dementias and Alzheimer’s Disease, then we are better equipped to adapt our loved ones’ environments to make those environments as comfortable, as non-threatening, and as “safe” as possible. We’ll never be able to completely eliminate the effects because the diseases are bigger than our best efforts.
Some of the causes of visuoperceptive difficulties in our loved ones with dementias and Alzheimer’s Disease include:
Dementias and Alzheimer’s Disease also bring difficulties with orientation. Evidence of this includes:
The cumulative effect of the visuoperceptual changes brought on by dementias and Alzheimer’s Disease will result in:
Visuoperceptual difficulties also lead to problems moving around. These problems make our loved ones fearful of falling and, as a result, they tend to dramatically slow down their movements while they try to walk safely.
As loving caregivers, we should learn to anticipate these situations, help explain what is being encountered, offer our arms for support, offer encouragement and slow down our own movements to match those of our loved ones.
Specific difficulties that our loved ones with dementias and Alzheimer’s Disease have when moving around include:
As caregivers, we can help minimize some of the effects of visuoperceptive difficulties for our loved ones suffering from dementias and Alzheimer’s Disease in several ways.
The first way is to ensure that our loved ones get regular eye health checkups and that any age-related vision problems that can be treated are treated immediately and aggressively.
A deliberate use of colors can help with diminished contrast vision. For example, a green plate on a white tablecloth is much easier to see than a white plate on a white tablecloth. Additionally, changing from a standard white toilet seat to a colored toilet seat will make the toilet seat easier to see.
We can also use color to highlight important objects and orientation points (for example, the bathroom door).
Improving the lighting levels in our homes will also help our loved ones, and ensuring that lighting is even around the house will minimize shadows and “dark areas,” making navigation and perception easier.
Use solid colors instead of patterns in flooring, carpeting, and runners to give a safer environment for navigating the house.
If mirrors and shiny surfaces cause problems with illusions and misperceptions, then remove those that are practical to remove and cover the rest.
Be sure to close curtains or blinds at night.
How we respond to our loved ones with visuoperceptual difficulties is perhaps the most critical part, in my opinion, of showing our love for them.
I have always had a very tender and gentle side, but I never showed or saw much of it myself until I took over the responsibility from my dad of taking care of Mama and making sure she was comfortable, safe, protected and okay.
Our responses should be calm and loving always. And this can be challenging, especially when we’re tired or aggravated. I am stating an ideal that I didn’t always attain with Mama. But it’s our goal to do this.
When our loved ones don’t recognize an object or person, we should not draw attention to the mistake nor ask questions that would put our loved ones “on the spot.”
We can explain what the object is used for or who the person is, but if it doesn’t work, let it go. It’s far more important to listen to what our loved ones are saying – and encouraging them to converse and participate in activities – than it is for us to be right.
When our loved ones don’t recognize people, we can ask friends and relatives to introduce themselves to our loved ones. Not recognizing people can be very distressing for our loved ones, and it can be upsetting for the people who are no longer recognized.
However, in the end, our job is to make sure our loved ones feel safe, encouraged, and supported. This is not their fault, so criticism or trying to force them to do something they are mentally incapable of doing is cruel and will often make our loved ones retreat from interaction with us and others. That does no one any good.
Hallucinations also fall into the vision category because our loved ones often see people who are not there or people who have died as if they are alive and in the room with them. Mama saw Daddy regularly, even though when she started seeing him, he’d already been dead for ten years.
She also saw friends and family from her earlier years from time to time.
And she saw people going in and out of her apartment (usually a young boy and girl, who’d go in when she left, and leave just as she came back in) just before her psychiatric hospitalization and the subsequent diagnoses of mid-to-late-stage vascular dementia and Alzheimer’s Disease in 2010.
Most of the time, she told me about these “visits” after the fact, but two hallucinations happened with me there when she was living with me. And they floored me, but instead of insisting there was no one there, I let her talk about them, which gave me time to formulate honest answers to her questions about them without hurting her or dismissing her.
The first happened just after she’d awoken one morning and I was sitting on the bed with her holding her hand while she woke up. I was speechless when she pointed to the bookcase just to the left of the bed and she asked me, “Do you see those two angels over there?” I told her I didn’t, but I encouraged her to tell me what she was seeing. She wasn’t scared and she seemed to be happy “they” were there.
As soon as Mama was fully awake, they were gone.
The second one was much different. We got up in the middle of the night because she needed to go to the bathroom (I kept the bathroom door fully open and a light on at night, and since it was just the two of us, I seldom closed the door). Just after she got in the bathroom with my help, she said, “Close the door! I don’t want that man to see me!”
I closed the door with both of us in there. When we were done, I opened the door to help her back to bed and she asked me if the man had gone upstairs. I nodded. She relaxed and went back to bed and back to sleep.
When she awoke the next morning, she didn’t say anything about the man right away. But when we were eating breakfast, she asked me where the man and the children – there were no kids the night before – were. I suspected she was thinking of Daddy and us as kids, so I told her everyone was gone and just the two of us were there at home.
That ended it, but it didn’t end the hallucinations that I continued to hear about right up until her death.
I was initially very conflicted about how to respond to Mama about the hallucinations because I knew they weren’t real and I believed I would be dishonest if I gave any indication that I thought they were.
However, I realized the hallucinations were real to her, even if I knew they weren’t really happening, so I encouraged her to talk about them in a way that didn’t lead her to ask me questions because I wasn’t sure how to answer them.
And I found that to be the best approach. She wasn’t afraid, she didn’t shut down, and she didn’t feel threatened by my response. And I heard some pretty interesting stories in the process. It was win-win.
My next post will tackle some of the psychoses that our loved ones suffer with dementias and Alzheimer’s Disease. While not all of these are negative – I will give some specific examples – many of them are and they, in my opinion, are one of the toughest aspects of these diseases to deal with rationally, lovingly, and calmly.
But it can be done and I will pass on some tips and lessons I learned in the process in the hope that it will help you.
This post will be a comprehensive list – in one place – of the prescription medications and vitamins that may be prescribed for our loved ones suffering from dementias and Alzheimer’s Disease.
My main purpose in doing this is so that caregivers, as medical advocates for our loved ones, have the information needed about the common medications and vitamins used to treat the symptoms of these diseases.
Currently there is a lot of information on the internet about these, but it’s so scattered and oftentimes so clinically-written that it’s impossible to pull it all together and make wise decisions as to accepting or rejecting medication proposals from primary care physicians and psychiatrists.
And the preceding paragraph has some information caregivers need to know, exercise, and require for their loved ones.
First, both a primary care physician and a psychiatrist need to be involved in medical care for our loved ones. One of the first requests that should be made to the primary care physician after a dementias and/or Alzheimer Disease diagnoses should be a referral to a geriatric psychiatrist.
The reason caregivers need to do this is because geriatric psychiatrists specialize in treating elderly patients and they also have access to the latest research in the treatment of the symptoms of dementias and Alzheimer’s Disease.
Primary care physicians are not specialists. This includes internists. They know a little bit about a lot of things, which is exactly what they were trained for (and that’s not a bad thing), but they don’t have the time nor the resources to be experts in any one thing.
Therefore, a geriatric psychiatrist is an absolute necessity to ensure our loved ones get the best care possible to treat the symptoms of these diseases.
Second, you have the right to refuse medication. For example, one of the medications that Mom’s primary care physician wanted to give her as the Lewy Body dementia symptoms worsened was Abilify. No doubt you’ve all seen the commercials touting Abilify as a “booster” for use with anti-depressants to relieve chronic depression.
This is an “off-label” use of the drug. So is prescribing it for our loved ones with dementias and Alzheimer’s Disease (a lot of the mood and psychosis-managing drugs prescribed for people suffering from dementias and Alzheimer’s Disease are “off-label” uses of those drugs).
I did the homework on it before I filled the prescription. Ability was created to treat schizophrenia. That would have probably been okay, but then I saw the warning that “ABILIFY (aripiprazole) is not approved for the treatment of people with dementia-related psychosis.”
In addition, by then I knew Mom also had Lewy Body dementia in addition to vascular dementia and Alzheimer’s Disease and I knew about the increased neuroleptic sensitivity associated with Lewy Body dementia, so I didn’t fill the prescription.
The first category of prescription medications is the cognitive enhancers. These drugs are designed to maintain mental health and may improve memory, awareness and the ability of our loved ones to go about their daily activities by boosting the function of existing neurotransmitters involved in memory and judgment in the brain. They will not reverse nor stop the neurological course of the diseases. They are:
The second category of prescription medications treats the mood and psychosis symptoms of dementias and Alzheimer’s Disease.
These medications need to be closely monitored and carefully dosed.
The optimal result of these medications is mood stabilization and no psychosis. If your loved ones are “knocked out” by this category of medications, the doses are too high. If your loved ones are “out of control,” the doses are too low. This is another reason you want a psychiatrist involved.
There are many possible combinations of this category of drugs. All the anti-psychotic drugs have possible side effects and extreme caution should be exercised, because of the high sensitivity to neuroleptics, in using these with our loved ones with Lewy Body dementia. Some of the most commonly-used medications are:
Anti-anxiety medications seem to be the most frequently mismanaged in this category of drugs. My advice is to advocate with our loved ones’ psychiatrists for low dosages and have them prescribe it to be taken as-needed instead of as part of the daily medication regimen.
The medication, Halcyon, by the way, should be avoided at all costs in people suffering from dementias and Alzheimer’s Disease. It really wreaks havoc and it has a very long half-life! The most likely place this would be given is during hospitalizations, so be sure to let all the hospital staff you come in contact with know that our loved ones should not be given Halcyon for anxiety and/or sleep.
Vitamin supplements may be added to address some of the functioning difficulties brought on by dementias and Alzheimer’s Disease. In my personal experience, I really don’t believe they’re all that effective after the fact of diagnosis. However, we all should make sure we have plenty of this in our own diets now to protect ourselves.
The most common are:
Please be careful to work with your loved one’s primary care physician on vitamin supplementation. In many instances, these brain diseases are not the only health issues our loved ones are dealing with and some of the vitamins that might address dementia and Alzheimer’s Disease symptoms could negatively interact with other prescription medication for other health problems.
Our job as loving caregivers is to give the best care we are able to our loved ones, advocating for them, protecting them, making sure that everything that is being done is in their best interests.
We are there because we love them.
All the other participants in the caregiving journey are there for other reasons and those reasons may, intentionally or unintentionally, not consider what is best for our loved ones.
So it’s our job to make sure that we are the gatekeepers to the best care we are able to provide for the people we love. It’s a big responsibility, but, in my opinion, there is no greater gift we can give or be given in this life than to do this.
Today’s post will discuss Lewy Body dementia: what it is, some of the hallmark features of it, and medications that can help, unless there are severe side effects, and some alternatives to deal with those cases in which the most-often prescribed medications may not work.
Lewy Body dementia is diagnosed during life by its symptoms. The only way to 
confirm it medically is by doing an autopsy on the brain after death. However, the symptoms are obvious enough that it can easily be diagnosed while our loved ones are alive.
This history of discovering the source of Lewy Body dementia began with Frederick Lewy in 1912. While doing autopsies on the brains of people who’d been diagnosed with Parkinson’s Disease (Lewy Body dementia and Parkinson’s Disease share many motor systems characteristics), Lewy discovered tiny – and abnormal – protein deposits in deteriorating nerve cells of the mid-brain. These proteins became known as Lewy Bodies. Their presence in the mid-brain always leads to a diagnosis of Parkinson’s Disease.
It wasn’t until fifty-plus years later that scientific researchers discovered these same abnormal protein deposits in the cortex (the “gray matter”) region of the brain in patients who had suffered from dementia.
Someone with Lewy Body dementia will have these abnormal protein deposits in both the mid-brain and the cortex.
The symptoms that differentiate Lewy Body dementia from Parkinson’s Disease are:
With my mom, although Lewy Body dementia wasn’t officially diagnosed (I did the research on what I was seeing and realized that’s what it was) until near the end of her life, all three of these symptoms were present early on when I realized something was wrong. She had progressively-worse balance problems the last six years of her life, with those becoming a front-and-center issue in 2010 when she began falling a lot.
Her hallucinations and delusions became a centerpiece issue in 2010 as well. There were also some fluctuations in her cognitive function in 2010, but the strong and dramatic fluctuations in both cognitive function and alertness did not begin until December of 2011. Even then, they were sporadic, but fairly quickly became more of a mainstay until her death in August 2012.
One the medications that she was given during her psychiatric hospitalization in 2010 was SeroquelXR.
This is one of the drugs you’ll have to make a judgment call on, since there are risks and potentially dangerous side effects to use this medication for an “off-label” use in treating the symptoms of dementias and Alzheimer’s Disease.
SeroquelXR is an anti-psychotic (neuroleptic) medication specifically developed for bipolar disorder. It carries a warning that it is not be used in elderly patients with dementia. Additionally, among our loved ones suffering from Lewy Body dementia, about 50% have adverse reactions to neuroleptic medications.
However, for Mom, it worked very well for about sixteen months in controlling the hallucinations and the delusions. In late November 2011, Mom woke up one morning and her whole body was uncontrollably, but rhythmically spasming. She wasn’t in any pain, but she was scared, so I had EMS get her to the emergency room so we could find out what was going on. What she experienced was late-stage neuroleptic-induced tardive dyskinesia.
The SeroquelXR was the culprit, so the neurologist discontinued that during her hospital stay and the spasms stopped within a few days. I was concerned about the mood aspect of not having the SeroquelXR, so the neurologist and Mom and I discussed options, since she was on anti-anxiety medication already.
The best and most workable solution was Depakote, a medication typically prescribed for epilepsy sufferers. It would work on both mood and spasms, but the neurologist said the hallucinations and delusions were going to come back.
And within a month, they did, but they were not scary to Mom and they were always a surprise to me, even though I expected them, but not unpleasant and not unmanageable.
But I came to realize that the SeroquelXR had effectively controlled a lot of the Lewy Body dementia symptoms the longer that Mom was off of it, because after the SeroquelXR was discontinued, the Lewy Body dementia symptoms gradually increased and worsened.
So SeroquexXR can be very effective in treating the symptoms as long as our loved ones can tolerate it and don’t have the kind of problems Mom experienced with tardive dyskinesia.
And that is an important point to make. A lot of this becomes a judgment call on our part as advocates and caregivers for our loved ones. If I knew back in 2010 (I wasn’t involved in the prescription part when Mom was critical and hospitalized) what I know now about SeroquelXR, I would have agreed to it. Because for sixteen months, it gave Mom a pretty decent quality of life in the dementias and Alzheimer’s Disease realm.
There is no known cause for Lewy Body protein deposits occurring in the mid-brain and cortical regions of the brain, so there’s nothing health-wise or lifestyle-wise that can be done to prevent it.
But, if we can understand what it looks like, then we can help keep our loved ones more comfortable and safe and perhaps keep ourselves a little saner and a little calmer. The more we know, the better we can love and serve them.
I’ll end this post with a progressive-over-time brain scan image of Lewy Body dementia (the source is http://www.neurology.org/). A picture sometimes is worth one thousand words, especially when I consider the fact that my mom had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease and this picture shows the damage to the brain from just one of those three diseases. What an uphill battle her last few years were and she fought it bravely and well right up to the end.
Going Gentle Into That Good Night 