Tag Archive | Caregiving

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.

We 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?

Sometimes 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.)

But, 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?

Is It Ever Okay to Be Dishonest With Our Loved Ones Suffering With Dementias and Alzheimer’s Disease?

Nov21

I’m actively involved in several online support groups for caregivers and sufferers of dementias and Alzheimer’s Disease.

Again and again, when caregivers post about issues and problems they are having in their roles as caregivers for loved ones who have dementias and Alzheimer’s Disease, I see in the responses, from other caregivers, the overwhelming advice to tell “fiblets” to handle the tough issues or problems.

I have noted that none of the dementias and Alzheimer’s Dementia sufferers in these groups offer this advice. Instead, they stress telling the truth at all times because as loved ones who are suffering with these diseases, they want to know the people they’ve entrusted their care to are being honest with them.

It is only the caregivers who suggest being dishonest and deceitful.

I’d never heard the term “fiblets” until I joined these support groups, but I know what that means morally and ethically. It is a synonymous term for an equally ubiquitous term in the general population: “little white lie.” (Lies, by the way, are lies. All the minimizing adjectives in the world do not change the bottom line of being dishonest and deceitful.)

Each time I see the word fiblet, I physically and mentally cringe. Partly because of the “it’s okay” mentality of those suggesting being dishonest by a labyrinth of excuses and justifications that, in the end, ring hollow.

And I cringe partly because of my own internal rejection of the morality and the ethics of being dishonest with anyone, no matter what his or her current neurological/mental/physical state. Beyond my foundation of absolute right and wrong that says that all dishonesty is wrong, I see the practical and detrimental effects of this practice in the relationships involved.

If I, as a caregiver for a loved one suffering from dementias and Alzheimer’s Disease, am willing to be dishonest about routine matters (e.g., “Dad left the house,” when Dad is actually there or Dad is dead, “I called the doctor,” when in fact no call was made, or “your brother/son was here yesterday,” when he was not or is dead) with my loved one(s), then how can I be trusted, in a general sense, and by my loved one and everyone else in my life, to be honest about anything else?

I destroy my credibility one lie at a time. And I create, in my own mind, each time I am dishonest, a myth that it’s okay, that it’s the easiest way, and that it’s necessary. And, I also am creating a habit that will automatically default to dishonesty any time I face a difficult situation in life. At some point, down the road, I won’t be able myself to know what is true and what is not because of all the lies I’ve told before.

So, not only have I broken the trust of my loved one(s) who’ve entrusted their care and their lives to me, but I have also broken the trust of everyone else in my life.

So, is it ever okay to be dishonest with our loved ones suffering from dementias and Alzheimer’s Disease?

The unequivocal answer is “No!”

Gracious Goodbyes – Missed Connections

Nov18

I don’t think any of us who’ve been through this journey through dementias and Alzheimer’s Disease with our loved ones doesn’t have events like “Gracious Goodbyes – Missed Connections” describes.

Somewhere back in the farthest corners of our minds, when even the simplest things escape our short-term memories (I’ve had so many of these lately when I have not been, when asked a direct question, in a sort of on-the-spot situation, that I knew the answer to like the back of my hand, able to find the answer – I suspect rationally that it is stress and overload, but there’s always that nagging fear that this is the beginning of a journey I’ve already been on and don’t want to go on again), we wonder if this the beginning of our own journeys into dementias and Alzheimer’s Disease.

Ironically, I am not related biologically to my mom, who suffered from vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. So, based on biology and logic, I shouldn’t worry. However, I know so little of my own biological background and medical history that I realize everything in this arena is totally up in the air.

On the one hand, I don’t know that I really care, in the big scheme of things. After all, I’m human. Therefore, by default, I’m terminal. The unknowns are when, how, why, what, and where. My hope (and prayer) has always been quick, soon, and with as little fuss and muss as possible.

I don’t want anyone to have to execute my DNR and my living will, both of which give me the quickest exit possible from this physical life. I’d rather God just step in, end my life in a flash, without leaving the agony of honoring my wishes to those that would have to make those decisions. I know they would, but I’d rather spare them the pain of having to do it.

But I also do not want my loved ones to have to go through the prolonged process of me dying the slow death, first mentally, then physically, that dementias and Alzheimer’s Disease bring. So, in that sense, I do care. Not for myself or for my life physically, but for those who would have to deal with these diseases if they come.

So, in the back of my mind, I don’t worry so much as I pray that I’m spared this particular way of exiting physical life. Each time I forget something I know I know, when I’m put on the spot to remember it, brings a twinge of anxiety, a moment of wondering, a slightly deeper intake of breath for what might be, what could be, but what I hope and pray will never be for me or for my loved ones.

Steps On The Path – From “Momma and Me Our Journey Through Lewy Body Dementia” blog

Aug20

As I read this post tonight on Momma and Me Our Journey through Lewy Body Dementia, tears filled my eyes as I remembered a similar moment with my mom a week before she died.

Mom didn’t know who I was most of that last week, but she knew I was someone she could trust. At least after she cried out to God as I put her into bed the Monday of the week before she died and said the words that cut me to the very inner recesses of my heart: “Oh, God, she’s trying to kill me!”

Mom’s mobility was so limited after the major heart attack she suffered on August 2, 2012, that it took all my strength and effort for everything that required movement for her and with her. I was as gentle as I could be with her, and, in some ways, sacrificed my own body, to ensure that Mom was okay, safe, and not taxed any more physically than was necessary. Mom was worth it.

Early in the morning the Tuesday a week before Mom died, she was in the hospital bed I’d had delivered on Monday and I was in the recliner where she’d slept since we’d come home from visiting my twin sister in May (sleeping in a reclining position eased what I now realized were chest pains from her congestive heart failure).

I was in my usual half-awake/half-asleep nightly ritual when a severe leg cramp forced me out of the chair and onto my feet. As I stood up, I saw that Mom was awake, but the leg cramp was so bad, I knew I had to deal with it first before I could deal with her.

I have an old ankle injury (from a serious car accident when I was in college in which my foot got wrapped around the brake) in the leg that was cramping – which is also the leg that I’ve had three reconstructive, repair, and replacement surgeries on my knee – so I’ve learned over the years that I have to be careful not to pop the ankle when I’m trying to walk out leg cramps in that leg.

Walking wasn’t helping, so I sat in a chair and tried to massage the cramp out. It took about 15 minutes, but I was finally able to stop the cramping enough to go to Mom.

I walked over to Mom and took her into my arms and leaned down to talk into her good ear and ask if she was okay. She took me in her arms and held me close to her, returning my embrace fully, and said “I know I’m not going to get out of here, but you can, so as soon as you get well, promise me you’ll leave.”

I promised Mom that I would and we held each other, for me, as mother and daughter, tightly for several minutes. I kissed Mom and told her I loved her always and unconditionally, and she pulled me closer and squeezed me tighter to her chest and then fell asleep.

Other than Mom’s rally the following Saturday, this is one of the most precious memories I have of my last days with Mom. Even if she didn’t know who I was in a conscious way, somewhere deep inside she knew. She remembered. She loved me. She was looking out for me.

In Alzheimer’s Disease and dementia, there’s not a lot left for us to take away as the diseases destroy our connections to our loved ones. I’m thankful for each one that I have, no matter how thin, how temporary, how distant. Because I know behind each of those is my mom and our bond.

It promises me that some things can’t be broken. Ever. For that I’m grateful and thankful.

Guide to In-Home Medical Care Options for Our Loved Ones Suffering from Alzheimer’s Disease and Dementias

Aug20

This post discusses home health care, palliative care, and hospice care options. Included in the video below are descriptions of each of these options and recommendations and advice, from my personal experience as a loving caregiver for my mom, about each one.

To begin the video, simply click on the “Play” arrow and the video will play (there is no sound).

Please continue to give me feedback on topics you’d like to see discussed here. This is our blog and, while I’ve got content that I’ve prepared and am preparing, I would also like to address any topics, concerns, and questions you have about providing loving caregiving to our loved ones with Alzheimer’s Disease and dementias.

Delusions, Suspicions, and Fears in Alzheimer’s Disease and Dementias

Jul29

Today’s post will discuss the psychotic manifestations of the brain damage that occurs in dementias and Alzheimer’s Disease. These, in my opinion, are the ones that are the hardest for us, as loving caregivers, to understand, anticipate, and manage.

I think part of the reason delusions, suspicions, and fears resulting from dementias and Alzheimer’s Disease are so difficult to be on the receiving end of is because they often can be sudden, random, and transitory, so they have the effect of keeping us, as family, friends, and caregivers constantly off-balance.

And that’s not comfortable for anyone as a constant state-of-being, since a sort of everpresent anticipatory anxiety is a common side effect for those of us on the receiving end.

For several months in 2010, as my mom was experiencing these in full-throttle, it seemed like my heart was constantly about ready to beat out of my chest as we went through this together. Sometimes it was because I didn’t know what I was walking into and other times it was because of what I’d just experienced. But it was nonstop for the duration.

One of my mom’s biggest fears after my dad died was that I would die before she did and she’d be left, in her mind, alone. Although I constantly reassured her that she didn’t need to worry, there were times in 2010 when I thought her fears might just come true.

Before we identify some of characteristics of the common psychoses associated with dementias and Alzheimer’s Disease, it’s important to understand what they are.

Delusions and hallucinations are not the same thing. Hallucinations are part of the visuoperception disorders that were discussed in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias.”

Delusions, on the other hand, are persistent untrue beliefs not substantiated by facts or evidence. In our loved ones suffering from dementias and Alzheimer’s disease, these delusions often are accompanied by paranoia. And, frustratingly, there is no amount of logic, evidence, persuasion, or proof that is effective to counteract the delusions.

It’s important to note, though, that the influence of delusions waxes and wanes with our loved ones, and sometimes may not be present at all. I found with Mom that hers were worsening and more pervasive as her sleep patterns got more and more disrupted.

The most common negative (not all delusions are negative) delusions among our loved ones suffering from Alzheimer’s Disease and dementias are:

that everyone is stealing their money, valuable items, and important documents
that everyone is lying to them
that everyone is abandoning them
that everyone is against them
that everyone hates them

These delusions actually create the other two psychoses of malignant suspicions and irrational fears.

Mom exhibited all of these before medication (SeroquelXR was a life-saver for her and me until the tardive dyskinetic effects related to her Lewy Body dementia prevented her from being able to take it anymore), and the belief that people were stealing things from her was the first to emerge.

It’s interesting to note that some delusions have a factual foundation in our loved ones’ pre-dementia and pre-Alzheimer’s Disease lives.

Mom actually had experienced theft of money (an insurance policy her dad had left to pay for her college was stolen by the aunt who was her guardian after his death) and a chest of items he and her mother had left to her (by the same person).

So, even before the dementias and Alzheimer’s Disease started taking their toll on her brain, Mom had a heightened fear of people stealing from her and taking advantage of her.

So when she began moving things – and this moving things got more frenetic as the damage from these diseases increased, so it just exacerbated everything and was a losing battle for me to try to keep up with – and then forgetting where she moved them, she immediately started accusing people of stealing them.

At first, her accusations were against other people, but eventually, she became convinced that I was the thief of everything, including her money (which I had no access to) and everything she misplaced.

I will never forget a Sunday afternoon a few weeks before her psychiatric hospitalization when my sister called to tell me Mom said she’d been at the hospital all the night before. I knew it wasn’t true, but my sister urged me to go back for a third time that day to Mom’s apartment and check on her.

I pulled into the parking lot next to a police car that was running and my gut told me that Mom had called 911 and the police were there because of her. Someone met me at the entrance and said that she’d called the police to have them arrest me for stealing her money.

Fortunately, the policeman just sat and talked with Mom and realized what was going on and got her calmed down and by the time I saw her, she was out of the delusional episode and tearfully welcomed me and said she loved me and asked me to forgive her.

Her tears always broke my heart and there was nothing to forgive, because I knew it wasn’t her fault, but my reaction was more a sense of helplessness to do anything about what was happening to her brain and the realization that it was bigger than both of us.

(Fields of Gold: A Love Story and Going Gentle Into That Good Night are two books I’ve written that detail different aspects of the details of how this unfolded.

Fields of Gold: A Love Story is the history of my dad and mom [much of what explains my mom’s background that led to her behavior and thinking as vascular dementia, Lewy Body dementia, and Alzheimer’s Disease affected her brain] and us, me included, as kids and our lives together. It is a story of love, of commitment, and of endurance. For all of us. I recommend it because I chronicle so much of the last years of Mom’s life, and for all caregivers, this will resonate, but more importantly, hopefully it will help you.

Going Gentle Into That Good Night is the big-picture overview of caregiving for loved ones who are suffering from Alzheimer’s Disease and dementias and my general offering of the lessons I learned in the process with Mom. This blog is a direct result of that book, so I can fill in the specifics, the details, and hopefully encourage and help you.)

After that Sunday, though, the delusions took over and every day until her hospitalization was like a siege. There were moments – and even a morning after a week of pure hell that I’ll never forget – of love and lucidity, but they were few and far between.

She was convinced I was stealing from her, that I hated her, and that I was purposefully hiding things in her apartment so she couldn’t find them.

Some days I spent hours trying to find things – sometimes successfully and sometimes not – and give her proof that nothing was missing and that I loved her.

But Mom simply, because of the dementias and the Alzheimer’s Disease and the ravaging effects that they were having on her brain, was unable to be persuaded that what she believed wasn’t true.

The one thing that always stung me most, however, was when I’d tell her that I loved her and she’d angrily say “Don’t tell me that! You don’t love me! It’s not true!”

And although she seemed to be doing everything she could – again, she wasn’t aware of nor was she responsible for this – to push me away or to push my buttons so that my behavior would validate her delusions, all I could see was the scared little girl who had been left all alone at the age of six and, instead of being angry or quitting her, compassion and mercy took over and all I wanted to do was protect her and love her and make it all okay.

And here is where I’ll offer some advice from my experience with delusions, suspicions, and fears. I’m not saying I always handled it with grace, but that was always my intent, and, most of the time, I did okay.

The first thing is to not take it personally. The reality is that delusions are the product of damage to the brain and mixed up memories of a lifetime and, as hurtful as the accusations and the strong negative reactions can be, they’re not really about us in the present.

The second thing is to remain calm. Reacting emotionally to or arguing with our loved ones suffering from delusions, suspicions, and fears actually heightens the suspicions and fears and in a strange way validates, for them, that their delusions are true.

It’s hard to stay calm, but it’s absolutely essential that you do. An even, reassuring tone of voice, deliberate and smooth movements and gestures, and supportive and encouraging words will not stop or change the delusions, suspicions and fears, but they will help.

If the situation escalates because of your presence, leave.

But not without being sure to tell our loved ones that we love them and we’ll see them later. I don’t care what kind of reaction that elicits – because it usually is negative – but it lets our loved ones know we’re not abandoning them.

And, then come back later, and start over. Repeat as often as is necessary.

The most important things, in my opinion, that we can do is to be loving, be patient, be merciful, and be compassionate. You and I have no idea of the tumultuous mental landscape that our loved ones with dementias and Alzheimer’s Disease are living with.

It’s beyond comprehension.

There’s a sense, for our loved ones, of the knowledge that they’re “going crazy,” and yet doing anything about that is beyond their control. It’s sad, it’s scary, it’s depressing, and it’s lonely.

Love, patience, mercy and compassion given and expressed unconditionally and continually will not change the reality of what these diseases are taking from our loved ones, but they will be the greatest gifts that we are able to give and will ensure that our loved ones can count on us to be there and give them these things, no matter what else happens, as they and we walk this journey together to its natural conclusion.

New Facebook Group for Caregivers

Jul19

I’ve created the Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses Facebook group. The group offers practical and informative support for caregivers of loved ones suffering from Alzheimer’s Disease, dementia, and other age-related illnesses. Please feel free to ask questions and seek support and we will be happy to help. If we don’t know the answer, we will do our best to find resources to help you.

It’s an open group, so anyone can join. Please consider joining and spreading the word so others know this resource is available.

You are not alone.

The Layperson’s Guide to Alzheimer’s Disease

Jun19

Today’s post will provide an overview look at Alzheimer’s Disease. As I’ve stated before, Alzheimer’s Disease is a specific type of brain deterioration disease (dementia) that differs from other dementias.

While Alzheimer’s Disease is a type of dementia, not all dementias are Alzheimer’s Disease. “Alzheimer’s Disease” has become the catch-phrase for all neurological degeneration among the general population and that imprecision leads to a lack of understanding of the complexities of these diseases, especially when several types of dementia are present concurrently.

Dementias affect specific areas of the internal structure of the brain and are caused by specific abnormal occurrences within those areas. We’ve looked at vascular (multi-infarct) dementia, which is a result of small vessel ischemia within the blood vessels in the brain, and Lewy Body dementia, which occurs when abnormal proteins are deposited in the cortex of the brain.

Alzheimer’s Disease affects the whole brain, essentially eroding and diminishing, through the resulting atrophy, the whole structure of the brain. The two crucial components in Alzheimer’s Disease are the overabundant presence of plaques (beta-amyloid protein deposit fragments that accumulate in the spaces between neurons) and tangles (twisted fibers of disintegrating tau proteins that accumulate within neurons). Watch this short video to see how these plaques and tangles form and how they lead to neuron death.

While plaques and tangles, which lead to neuron death (the nerve cells get deprived of what they need to survive and be healthy), are part of the aging process, in our loved ones with Alzheimer’s Disease, there are so many of them that the brain slowly dies from the inside out.

It is clear from the picture above exactly why Alzheimer’s Disease is a systemic disease, because all areas of the brain are eventually impacted.

However, as Alzheimer’s Disease begins, the first area of the brain affected is the temporal lobe, which is, in part, responsible for long and short-term memory, and persistent short-term memory loss is usually one of the first symptoms of Alzheimer’s Disease to appear.

The second area of the brain to be affected is generally the frontal lobe, which handles information processing and decision-making. The last part of the brain to be affected is usually the parietal lobe, which is the area of the brain responsible for language and speech.

Alzheimer’s Disease has distinct stages in which symptoms materialize. The stages are (this lists the three main stages, but there is also a more comprehensive seven-stage breakdown, known as the Global Deterioration Scale or the Reisberg Scale):

Stage 1 – Mild – Recurring short-term memory loss, especially of recent conversations and events. Repetitive questions and some trouble with expressing and understanding language. Possible mild coordination problems with writing and using objects. May have mood swings. Need reminders for some daily activities, and may begin have difficulty driving.
Stage 2 – Moderate/Middle – Problems are evident. Continual memory loss, which may include forgetting personal history and the inability to recognize friends and family. Rambling speech. Unusual reasoning. More confusion about current events, time, and place. Tends to get lost in familiar settings. Experiences sleep issues (including sundowning). More pervasive changes in mood and behavior, especially when experiencing stress and change. May experience delusions, aggression, and uninhibited behavior. Mobility and coordination may be affected. Need set structure, reminders, and assistance with daily living.
Stage 3 – Severe/Late – Confused about past and present. Loses all ability to remember, communicate, or process information. Generally incapacitated with severe to total loss of verbal skills. Unable to care for self. Often features urinary and bowel incontinence. Can exhibit extreme mood disturbances, extreme behavior, and delirium. Problems with swallowing occur in this stage as well.

It’s important to remember that not all our loved ones with Alzheimer’s Disease – especially if there are other dementias present – will go through every aspect of each stage nor through all the stages before they die. That’s one of the real difficulties with “mixed-dementia” diagnoses, as these are called, because it’s difficult to tell which brain disease is causing which problems and that makes them more difficult to manage symptom-wise.

The medications generally prescribed for Alzheimer’s Disease are Aricept (mild to moderate stages), Namenda (moderate stage), and Excelon (mild to moderate). All three of these medications are cognitive enhancers. It’s not unusual to have more than one of these medications prescribed at a time.

I will talk specifically about sleep disturbances in dementias and Alzheimer’s Disease, including sundowning, in another post, but I will caution all caregivers to stay away from both non-prescription sleep medications like Tylenol PM, Advil PM, and ZZZQuil and prescription sleep medications like Lunesta and Ambien (all of these can actually make the symptoms worse and definitely make injury and/or death from a fall more likely).

Melatonin is naturally-occurring sleep hormone in humans. As people age, there is less melatonin produced. That’s why, in general, most older people who have never had sleep disorders eventually and gradually sleep less than their younger counterparts. However, the brain damage that dementias and Alzheimer’s Disease cause exacerbates this lack of melatonin.

So, it’s worth it to try a therapeutic dose (up to 20 mg per night is considered to be safe) of Melatonin. It is available over-the-counter at both brick-and-mortar and online drug stores.

Start with a 3 mg dose and add slowly. With my mom, a 5 mg dose provided enough for her to sleep as best as she could through the night. Do not overdose because this will disrupt the circadian rhythm further by producing late sleeping and grogginess during the day.

Usually our loved ones with dementia and/or Alzheimer’s Disease, even though these diseases are fatal (when the brain’s dead, you’re dead), don’t die from them specifically.

They die either from a concurrent health problem (in my mom’s case, it was congestive heart failure which lead to a major heart attack, a minimal recovery, and then her death twelve days later) or from complications that arise from the brain degeneration caused by the dementias and/or Alzheimer’s Disease.

The two most common causes of death in Alzheimer’s Disease are pneumonia (the brain controls swallowing, and once that becomes compromised, aspiration of food into the lungs is likely and leads to an infection) and fatal trauma to the head from falls.

The Layperson’s Guide to Lewy Body Dementia

Jun17

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:

Vivid and recurring hallucinations and delusions early on when the inkling that something’s going wrong starts.
REM sleep behavior disorder
Mild to moderate motor skills impairment, most notably with balance, muscle stiffness, and the tendency to fall frequently. A shuffling gait when walking is usually noticeable as the disease progresses.
Strong and dramatic fluctuations in cognitive function and alertness.

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.

You Will Never Be the Same Again

Jun12

Caring for a loved one with dementias and Alzheimer’s Disease changes us. This, I believe, is one of the most unrecognized aspects of going through the journey of these diseases with loved ones.

I know with my mom, who had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease as well as suffering from congestive heart failure, I changed throughout the course of our journey together, perhaps as much or more, in different ways, as she did.

And now that she’s gone, it’s difficult for me to imagine that person that I was before all this started. That person in that configuration is gone. In some ways, that’s good, because that previous iteration of me had some flaws that needed mending, ideas that needed changing, and attitudes that needed correction.

In other ways, though, it’s challenging. Caregiving is a 24/7 job, especially as the diseases progress and the changes become more rapid and more intense, requiring every bit of time, effort, and diligence on our parts to ensure our loved ones are safe and comfortable.

Because of the nature of dementias and Alzheimer’s Disease, this is a long, extended high-alert, always-alert, always-ready position for caregivers. It becomes who we are and it reflects the tenor of our lives.

And then one day, it suddenly stops. Adjusting to that abrupt and radical change is, in my opinion, of all the things caregivers do in the course of taking care of loved ones, the hardest part.

I think of it as being in a car going from 120 mph to a dead stop within the time it takes to snap your finger. In some ways, it’s like the aftermath of a high-impact car crash that you walk away from.

I have learned, though, that unless you’ve walked in the shoes of caregiving day in and day out for someone you love with dementias and/or Alzheimer’s Disease, it’s very hard to relate to what the now-defunct caregiver is going through in this post-caregiving phase. It’s not that other people don’t want to understand. It’s just that they can’t really if they haven’t been through it.

There is a tremendous sense of being lost. Because loving caregiving requires such a high investment all the way around, when that ends, there’s a sense of purpose, usefulness, and worth that ends with it.

There’s a sense of wandering around aimlessly while the rest of the world around you is going on as it always has. There is a sense of not belonging anywhere, to any time, or any place. It seems like no matter what you do after that, it’s meaningless, compared to what you were able to give your loved one.

My guess is that will be something we carry somewhere inside us the rest of our lives. It’s just part of the change.

Another change will be that you’re more observant and helpful, especially around elderly folks. Not long ago, I volunteered to help during a cookout at a rehabilitation hospital. One of the things I was doing was helping people to the tables, some of which were on concrete and some of which were on grass.

There was an elderly woman with a walker who clearly had balance issues, and although there were staff members around, no one seemed to realize that as she was walking on the sidewalk toward a table in the grass, she was precariously close to the curb and all it would have taken is just a second for her to have lost her balance, fallen and hurt herself. Visions of Mom flashed in my brain and I ran over to help make sure she got where she was going safely.

Greater compassion toward and protectiveness of those who are vulnerable, as our loved ones suffering from dementias and Alzheimer’s Disease are, will be another change that occurs.

A friend of mine who works as a beautician in a senior care facility wrote on Facebook the other day about getting cursed out by an 88-year-old woman who didn’t want the shampoo rinsed out of her hair.

Almost immediately, the insensitive and disrespectful comments started. One person said that she would have sprayed the elderly lady in the face if she had cursed at her.

I got very angry. That could have been my mama they were talking about. I sent a private message to my friend explaining that the lady probably had some form of dementia and/or Alzheimer’s Disease and didn’t even know what she was doing and would have probably, given her age, never done that in her right mind.

And the biggest change will be that your life will never be the same. You will never look at anything the way you looked at it before you embarked on the caregiving journey with your loved one. At a core level, you’ve changed.

And your biggest challenge will be figuring out what to do with that to go forward, to make the experience count, not just for your loved one, but everyone else, in whatever small way you can, that your life intersects with until the day that you draw your last breath.

And you’ll find it’s a very solitary, lonely journey. But like all the journeys you’ve been on up until now, it’s a necessary one. It will take a lot of patience and gentleness with yourself. It will take time. Most of it will be arduous.

But the most important thing I can pass on to you is not to quit and keep putting one foot in front of the other, even if for long stretches it seems you’re walking in place. Sooner or later, as long as you’re moving, eventually it will be in forward motion.

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this: