Tag Archive | Dementias

The Layperson’s Guide to Neural Disorders That Often Lead to Neurodegeneration and Dementia

Most dementias – Lewy Body dementia, vascular dementia, early-onset dementias, alcohol-related dementia, and Alzheimer’s Disease among them – appear seemingly suddenly as primary and distinct neurodegenerative processes without definitive causes (except in the case of genetic inheritance, which primarily occurs in rare dementias like Corticobasal Degeneration, Progressive Supranuclear Palsy, and Fatal Familial Insomnia and some of the early-onset dementias).

However, there are a group of neural disorders, which are caused by the same genetic mutation that affects lipid storage in the body, that often have dementia as a secondary symptom as the diseases progress.

These neural disorders (all these have sphingolipid metabolism dysfunction in common) – which include Niemann-Pick disease, Tay Sachs disease, and Gaucher disease – are characterized by by increased levels of a particular type of sphingolipid.

There is no cure for these neural disorders and they are all fatal (in many cases, during childhood).

Spingolipids are the biological product of a chemical process that creates a protective layer on nerve cell membranes and ensures proper – and protective – cell signaling and are critical to optimal brain function.

The genesis of sphingolipids are long-chain – also known as sphingoid – bases that normally have a length of 18 carbons, although they can also have lengths of 16 or 20 carbons. The length of long-chain bases is determined by serine palmitoyltransferase (STP), a multiprotein enzyme.

In neural disorders like Niemann-Pick disease, Tay Sachs disease, and Gaucher disease, a mutation (known as Stellar) in one of the proteins that makes up STP creates an abnormally high number of 20 carbon long-chain bases, which dramatically interferes with sphingolipid metabolism.

This causes neurodegeneration to occur. In all these neural disorders, much of the neurodegeneration begins soon after birth.

In Tay Sachs disease, neurodegeneration of the brain and spinal cord begins at about six months of age. The average lifespan is four years.

Gaucher disease has three subtypes.

In Type 1 Gaucher disease, symptoms, which include anemia, bone deterioration, and liver and spleen impairment, are non-neurological and do not materialize until middle age. The average life expectancy for Type 1 is 68 years.

Type 2 and Type 3 Gaucher disease are both neuropathic forms of the disease. Neurodegenerative symptoms include abnormal eye movements, seizures, and systemic brain damage.

In Type 2 Gaucher disease, the onset of symptoms is within three to six months of age. Deterioration is rapid; the average life expectancy is about two years of age.

Type 3 Gaucher disease is a slower onset and involving version of Type 2. The average onset of neurological involvement is late childhood into adolescence. Life expectancy ranges from the mid-twenties to, in extremely rare cases, the early forties.

Niemann-Pick disease has four types: Type A, Type B, Type C1 and Type C2.

Niemann-Pick disease Type A occurs in infants. Symptoms include enlargement of the liver and spleen (around three months of age) and a failure to thrive during the first year of life. At one year, widespread damage to the lungs occurs, and there is a progressive loss of neurological and motor function.

Along with Tay Sachs disease, Niemann-Pick disease Type A also has a common eye deformity consistent with neurometabolic disease, known as a cherry spot, that occurs within the macula and is often what initially identifies the two neural disorders.

While most children born with Niemann-Pick disease Type A die in infancy, a few may live as long as four years.

Niemann-Pick disease Type B includes most of the same symptoms as Type A (motor skills are not usually affected), but the onset of symptoms is during adolescence. Most people with Niemann-Pick disease Type B survive into adulthood, but mortality rates climb dramatically between twenty and thirty years of age.

Niemann-Pick disease Type C (C1 and C2 are caused by different gene mutations, but the symptoms are the same) is characterized by severe liver disease, severe pulmonary infections, progressive neurodegeneration, and increasing difficulty with speech and swallowing that deteriorates completely over time.

The onset of Niemann-Pick disease Type C can be at any age, but it is most commonly seen by the age of five. The life expectancy with this type is under twenty years of age when symptoms appear in childhood. When symptoms appear later, the life expectancy is ten to twenty years after symptoms begin.

Believe Half of What You See and None of What You Hear (or Read): Navigating Dementias Information Online

Sep20

We humans are a very gullible bunch. We are also capable of the most incredible leaps of faith in tying the most disparate and thinly-threaded information together while we routinely disbelieve proven facts and credible information backed by proof, analysis, and critical thinking.

Why is that we go to the outermost reaches of implausible information to build our internal knowledgebases on instead of doing real, credible – yes, it takes time, it takes effort, it takes analysis, it takes critical thinking, it takes patience, and it takes commitment – research to understand the various kinds of dementa (Alzheimer’s is just one kind of dementia), to understand what the scientific process – and effects are – and to understand how we as caregivers can love and support our loved ones with honor and dignity?

Going Gentle Into That Good Night is a comprehensive resource for factual, well-researched, and practical information on dementias. The information is free for everybody. Yet routinely I see the most outlandish and untrue information on dementias on social media.

Silver bullet cures (there are no cures). Unproven links to other diseases based on an infinitesimally small test sample (no real scientist or pathologist would hang their careers on samplings this small to announce a finding). Claims that this or that “natural” thing will reverse or improve a brain already neurologically compromised.

It sounds wonderful. But it is misinformation, disinformation, and, in many cases, completely dishonest.

For a lot of these things, the motive is to get us to spend a lot of our hard-earned money on a pipe dream while the people getting rich on our backs are laughing all the way to the bank. For the other things, it is simply a matter of hacks or inferior scientists, doctors, etc. trying to get their 15 minutes of fame.

All at our expense and at the expense of our loved ones with dementias and Alzheimer’s Disease. Not only is there a monetary expense, but there is also an emotional expense, a psychological expense, and a physical expense.

All of these areas can be significantly drained and irreparably damaged in the process.

An example of this insanity in the pre-information age was in the widespread usage of mercury as a cure-all during the 18th and 19th centuries. Mercury, it turns out, is incredibly toxic and rapidly leads to premature death (Louisa May Alcott, author of Little Women, died an early death from mercury, which was prescribed for her various physical ailments, poisoning).

It is easy to think, “Duh!” now, but the same kind of misinformation, disinformation, and outright lies are even more rampant and accessible today because of technology.

If you want to believe something – even something unproven, outrageous, dead wrong, and possibly life-threatening – the internet offers you the backup and the “proof” you need to justify whatever it is you want to believe.

The internet is full of hacks. It is full of wannabes. It is full of misinformation, disinformation, and lies. About dementias. And about everything else.

Do not believe anything that you cannot prove yourself beyond a shadow of a doubt. Do not trust anything just because it looks like somebody credible (a doctor, perhaps) said it.

I implore you not to check your critical thinking, your BS meter (we all have one, I hope), your logic, your reason, and your common sense at the door when you enter the wild and wacky world of the internet.

Here’s the most important thing to remember. Most disinformation, misinformation, and outright lies have a tiny grain of truth in them. That is always the hook. Always.

However one grain of truth surrounded by countless grains of not truth still makes the information as a whole untrue. Do not fall for the hook because once you do, then you are moving as far and as fast away from the truth as possible.

An example related directly to dementias is the supposition that shows up over and over that Lyme Disease is the cause of Alzheimer’s Disease.

This is sensational disinformation and misinformation. A healthy dose of common sense with thoughtful, careful, and diligent research, analysis, and critical thinking would prove or disprove this bombshell claim.

Common sense brings the “5 in 5 brains” into focus. Five brains out of the millions of people who have had and who have some form of dementia is not a credible sampling of the population affected.

I could very easily go out and find five random people who have the same auburn hair that I do and declare that I have turned genetics upside down and found that auburn hair is a dominant trait (it is recessive).

This is common sense and logic and we must bring these to the table when we’re looking at any and all information. Applied to this graphic, we should automatically mistrust this information.

But that’s not enough to prove it wrong. We actually have to go and do some research. This microstudy was done by McDonald in 2006. The opening statement of the abstract tells us key information through which to view McDonald’s microstudy: “Here is hypothesized a truly revolutionary notion…”

A hypothesis is not fact. It is a theory, a guess, an imagination that remains to be proved or disproved. The infographic, then, presents the information as already being proved, which is misinformation.

That the study was done almost 10 years ago also raises the eyebrows of doubt because much has been done in the research and causes of dementias and Alzheimer’s Disease in those intervening years.

In fact, with some research on the possible link between Lyme Disease and Alzheimer’s Disease, we find a study from 2014 (eight years after McDonald’s microstudy) that definitively repudiates the existence of a link between the two diseases.

To not verify and prove anything and everything is not only lazy, but in many ways, ignorant. Why would we not want to get all the facts instead of trying to support some pet theory that we believe? I don’t understand that.

Too few of us, to our discredit, actually go through this process and that is what I am begging each of you and imploring each of you to do. Know why you know what you know. Know why you believe what you believe. Know why you do what you do.

Never, ever accept anybody else’s word for anything. Prove it. Disprove it. But never just accept it.

Ever. If not for ourselves, for our loved ones. They’ve entrusted their lives to us. We owe it to them to be rigorously honest and apply that everywhere in our lives and to not fall for gimmicks, misinformation, disinformation, and outright lies.

The cost of not doing this is high to everyone.

To us in terms of our character and our credibility (if we perpetuate disinformation, misinformation, and erroneous information, then we are leading people astray and away from the truth).

To our loved ones in terms of their care and their lives (we can cause much harm and much suffering by believing things that are not true and not proven).

A huge part of true love is the continuous hard work it requires us to put into living it, being it, showing it consistently and continually.

Is our love real or is it not? How do we know?

Help is Available to Pay for the Medications Our Loved Ones With Dementias and Alzheimer’s Disease Need

Sep17

On top of the devastating neurological, physical, and emotional toll that dementias and Alzheimer’s Disease have on our loved ones, the cost of care – hospital equipment, adaptive devices, supplies, and medications – even when we as caregivers are carrying a fair share of that burden is often financially overwhelming.

Most costly, especially for our loved ones who depend on Medicare (and, hopefully, a Part B supplemental policy and a prescription plan), are the prescription medications used to help manage symptoms and behaviors associated with dementias and Alzheimer’s Disease.

Very few of these medications have generic equivalents, so there is no other option but to buy the Big Pharma patented – and outrageously expensive – medications.

When our loved ones with dementias and Alzheimer’s Disease who are covered by Medicare hit the “donut hole” of coverage, the prescription costs go through the roof because they are billed at full price.

However, there are options available for assistance with paying for these medications all year round.

I’ll summarize the options here:

Do your homework before filling the prescriptions. Big-box retail stores like WalMart and Sam’s Club (Costco and BJ’s as well) have more affordable prices than stores that are specifically geared around selling medication (CVS, Walgreen’s, etc.). Independent pharmacies may be able to give a better price as well.
If the PCP prescribes a medication that the insurance plan doesn’t cover, you can appeal for coverage.
1. The insurance plan will send a letter of denial.
2. Make sure that the PCP provides documentation that the medication is medically necessary.
3. Contact your state’s regulator to ask for a free independent medical review.
Financial assistance may be available.
1. NeedyMeds is a national non-profit organization that helps connect people with financial assistance.
2. Other non-profits who may be able to help with financial assistance for prescription medication are: Partnership for Prescription Assistance, Patient Services, Inc., and Patient Advocate Foundation’s National Financial Resource Directory.
3. Financial assistance – and sometimes free medications – is also available from pharmaceutical companies for medications that are still patented (there are no generic equivalents).

A note from my own experience will save you a lot of time, aggravation, and trouble. Having a PCP or a geriatric psychiatrist deal with the pharmaceutical companies for assistance with patented medications will get the fastest and best results.

The pharmaceutical companies have applications for assistance that the PCP or geriatric psychiatrist will provide. You will have to provide income statements, Medicare expenses already paid, and other expenses related to care. Include everything!

The PCP or geriatric psychiatrist will submit the paperwork and if it is approved, the medication will be sent to them and dispensed from them. The good news is that once you’re in, you don’t have to redo the paperwork again.

Another thing to be aware of is that these programs are not designed just to assist the most economically-disadvantaged members of our society.

The middle-class, which is the largest segment of American society, is feeling the financial squeeze on all fronts more than any other group (and if we are taking prescription medication, we can use some of these resources too for financial assistance to help pay for them). Even though our loved ones with dementia and Alzheimer’s Disease may have pensions, Social Security, and Medicare coverage, the costs of living – and dying – are far outpacing what they have coming in each month.

So this is a potential lifeboat to keep them as financially solvent as possible, while ensuring that they have the medication they need.

Global Dementia Report for 2015 Released

Aug25

The infographic above was included in the World Alzheimer Report 2015: The Global Impact of Dementia, released on August 24, 2015.

Dementias of all kinds are on the rise, despite pernicious and false claims that the rate of dementia diagnoses is stabilizing.

With an increasingly toxic planet – air, water, food, soil – our bodies and our brains are suffering irreparable damage over time, and dementias are the neurological manifestation of that damage.

Additionally, we have developed lifestyles – processed and fast foods with chemicals, too much salt, and too much sugar, neurologically-altering drugs (prescription and illegal) that have become the rule, not the exception, and increased alcohol consumption and abuse – that are harmful to our bodies and our brains, resulting in the dramatic rise in both physiological diseases and neurological degeneration.

With technology addiction and sleep disorders/deprivation layered on top of these, we, as a society, are choosing to further increase the odds of our widespread development of dementias.

And to top it off, the general population is getting older – Baby Boomers are about to bust all the rest of us in their old age – and medicine continues its march toward quantity of life (age) instead of quality of life (health).

With all of these factors in play, the reality is that most of us don’t stand a chance of not developing some sort of neurological impairment. It may not be full-blown dementia, but most of us are at high risk.

In some of these things – lifestyle, technology addiction, sleep habits, quality of life versus quantity of life – we have complete control. Our previous habits may have already done irreparable damage, but we have the choice today to say “Enough already!” and change.

But will we?

The pessimist/pragmatist/realist in me says most of us won’t.

I watch myself making every change I can and I watch most of the world around me continuing – even increasing speed and intensity – headlong into the very practices and behaviors we have complete control over that will lead to cognitive impairment.

I have sounded the warning here many times. But I realize that I’m just talking to myself. Nobody else cares, it seems.

At times, I wonder why I care if nobody else does. Talking to yourself is a waste of time, so I often wonder if I’m just wasting my time with this blog. Maybe I am.

But I keep doing the blog because if it helps just one other person on the planet, then that’s one person out of 7.5 billion people that I’ve been able to serve and if I stop, then I stop serving. My conscience and who I am won’t let me do that.

And even if nobody wants to hear it now, maybe in a few years, when I’m dead and gone, and their families are watching them go through the journey of dementias, their families will find this blog and it will help them.

If I leave a legacy, this might be it. I don’t have high hopes for any legacy. People are so hedonistic and narcissistic now that they don’t pay any attention to anything serious or important. I can only imagine that will get worse in the future too.

But even if there’s no use for this information, at least I know I’m doing the best I can to pay what I’ve learned forward and try to help others. The choice of whether they want to learn or ignore is theirs, not mine.

C’est la vie.

The Layperson’s Guide to Revocable Living Trusts, Guardianships, and Conservatorships

Jul6

When our loved ones with dementias and Alzheimer’s Disease reach the part of the journey through these neurological diseases where they are unable to handle their own financial and legal matters, we as caregivers have no option but to step in and act for them and in their best interests.

Here in the United States, there is an incomprehensible aversion to planning for the possibility of having to entrust our lives to someone else and for how we want to die.

It’s as though we have this national collective mentality that if we don’t think about it, then it won’t happen.

The bad news? No matter what, it’s still going to happen.

And someone is going to be left holding the bag – maybe the person we would have designated or maybe someone we don’t want making decisions for us – to decide for us.

If it’s a person we trust, then they have the agony of trying to figure out what’s best and what we would have wanted. This is especially agonizing when dealing with end-of-life issues.

Too many people in this position of not knowing what we want, because we refused to talk about it, prolong our suffering and run up needless bills in the process, simply delaying what would have been the inevitable outcome anyway.

If it’s a person we don’t trust, all bets are off. And it is not going to be pretty.

The time to prepare for both of these inevitables – unless we die early and truly unexpectedly (I can’t help but laugh every time I see an obituary for a really elderly person that says they died unexpectedly: suddenly, perhaps; unexpectedly, no) – is when we have the ability to and can make sure what we want to happen happens.

From the standpoint of appointing someone we trust to handle our financial and legal affairs (most of us do an okay job with medical powers of attorney, but even that gets ignored more than it should), a revocable living trust is probably the best and safest way to go.

The benefits of a revocable living trust are:

The person creating it retains control and can revoke control at any time as long as they are competent;
It can be set up with a small amount of money or a piece of property in the trust and the attorney’s fee (varies by state);
The person creating it designates the person/people they trust to handle their legal/financial affairs;
It eliminates the need for a will;
It cannot be legally contested;
The process of transferring control to the designated trustee in the case of incompetency requires a professional (psychiatric) letter with the diagnosis and evidence of incompetency;
It, with the professional letter declaring incompetency, is the only documentation needed for the designated trustee to handle finances and legal matters.

A revocable living trust is probably the easiest way to ensure what we want both in life if we can’t do it ourselves and in death after we’re gone.

However, it is of supreme importance to choose wisely and be absolutely convinced of the trustworthiness of the person we designate to be our trustee.

The bottom line? If we have any doubts as to whether we can trust someone completely, we do not choose them as our trustee.

It will not end well for us – in fact, it could end gruesomely and tragically – and all our careful planning will have been for nothing, to put it mildly.

But what if, as many Americans do, our loved ones with dementias and Alzheimer’s Disease reach the stage where they are not competent to handle their affairs without any legal documents in place?

There are two options, and by the time this is needed, it’s likely that the petitioner (us for our loved ones or our families for us) will need both of them granted.

Both options are very costly (much more expensive than the cost of powers of attorney and a revocable living trust), often take a long time to be granted, and, in many cases, set off a family war, which not only can delay a decision, but can also create irreparable rifts within the family.

One option is guardianship. Guardianships give the petitioner the legal authority to take physical care of the loved one who is incapacitated.

The process to obtaining guardianship begins with getting a professional letter confirming the person for whom guardianship is sought is incompetent to handle their own affairs.

That letter must be taken to an attorney to have a petition drawn up to submit with the letter to the court. The petitioner is responsible for all the attorney fees (general estimates are in the $2500 to $4000 range if the petition is uncontested) and court costs.

The court will decide – slowly – whether to grant the guardianship and the entire process can take several months at the very least.

The second option is a conservatorship. A conservatorship gives the petitioner the legal authority to handle financial and estate matters for of the loved one who is incapacitated.

A conservatorship has the same legal requirements and process as a guardianship and has the same potential problems as well. That’s why if a petitioner has no other choice but to pursue these options, it’s prudent to do both of them at the same time.

There is an additional requirement for the petitioner who is granted a conservatorship for a loved one who is incapacitated. The petitioner will have to file a detailed annual financial report for the estate to the court for review to ensure that the estate is being managed as the court sees fit.

If the petitions for guardianship and conservatorship are uncontested, they will take a much longer time and much, much more money to obtain than having an attorney draw up a revocable living trust that settles everything.

If the guardianship and conservatorship petitions are contested by other family members, it’s conceivable that the legal fight could outlast the loved one who is incapacitated and the amount of money spent to fund the fight would be outrageously high.

We may have no choice in these matters with our loved ones that we are caregivers for, but I urge each of us to consider taking care of these things for ourselves now for our potential caregivers.

We need to tell our families what we want, carewise, for longterm care and at the end of our lives. We need to choose and discuss with the person we want to ensure that our wishes are carried out. We need to get the legal paperwork done and keep one copy in our home safe or a safety deposit box at the bank and give the other copy to the person we designate to carry out our wishes.

We never know when time and chance are going to happen. Today is the day to prepare for that. Tomorrow may be too late.

After Caregiving For Our Loved Ones with Dementias and Alzheimer’s Disease Ends

Jun30

For each of us who have been or are primary caregivers for our loved ones with dementias and Alzheimer’s Disease (along with comorbid age-related illnesses), we are firsthand witnesses to the physical, emotional, mental, and financial toll it can have on us the caregivers.

But at some point our role as caregivers ends. Dementias and Alzheimer’s Disease are ultimately fatal since the brain affects every part of the body and as the neurological damage of these diseases progress, the damage spreads to the rest of the body.

As I wrote in one of the very first posts I wrote for Going Gentle Into That Good Night, we will never be the same again after being caregivers for our loved ones with dementias and Alzheimer’s Disease and other age-related illnesses.

But it’s been my observation that the caregiver experience leads us in one of two polar opposite directions after our caregiving days are over.

For some caregivers, their path after caregiving leads them toward helping other caregivers who are or will be on the journey through dementias and Alzheimer’s Disease. They do this through blogs – like this one – and books and online and offline support groups.

This path gives an added benefit to the caregivers who choose it: it facilitates the healing process and it often provides a productive journey through the grieving process.

However, for caregivers who choose this path, they learn along the way that there are some things that will never heal in this lifetime and grieving is not a finite process.

The benefit, though, is perspective and acceptance, even in the deeper wounds that won’t quite close up and the unexpected tears that can show up anytime and anywhere no matter how much time has passed.

For other caregivers, though, the path after caregiving is to leave it behind and shut the door on it. In most cases, this is the result of a tremendous amount of pain and loss in their own lives while they were caregivers because of the huge physical, emotional, mental, and financial toll caregiving had on them.

They don’t want to be around anything having to do with caregiving anywhere in their lives: blogs, books, support groups, or even friends and family who are or will be caregivers.

You can literally see this group of caregivers shut down and mentally check out when anything related to caregiving comes up in their lives. They physically, mentally, and emotionally walk away and never look back.

None of us knows what path we’ll choose when our caregiving days for our loved ones with dementias, Alzheimer’s Disease, and age-related illnesses are over.

And what I hope we remember is that neither path, regardless of which we choose, makes us better or worse than those who chose the other path.

For all the similarities we humans share, we each are unique creations who walk unique paths through our lives. I don’t know the details of where or what you have been through and you don’t the details of where and what I’ve been through.

So I urge each of us to be kind, to be empathetic, to be respectful to every other person who has been, who is, who will be a caregiver for loved ones with dementias and Alzheimer’s Disease and age-related illness, regardless of which path they have chosen, choose, or will choose.

Let’s not forget that we’ve all shared the same experience and that creates a bond between us of understanding. We should also remember that, when it’s all said and done, being a caregiver is an incredible act of love that, sadly, in our society more and more people are not willing to make the sacrifice for.

So all of us who have been, who are, and who will be caregivers are incredibly loving people who made the sacrifice, just like the loved ones we care for did with us, at, sometimes, a huge personal cost to themselves for the rest of their lives.

The path we choose afterward is often self-protective and a path toward some sort of wholeness. And that’s okay, even if it’s not the path we chose, choose, or will choose.

There is no right or wrong in the path after caregiving. It depends on each one of us which direction we take. But let’s don’t attack, don’t condemn, don’t criticize our fellow travelers in this journey because they choose a different path than we did after the journey with our loved ones with dementias and Alzheimer’s Disease ends.

“Memory Lessons” – Jerald Winakur: Book Review and Recommendation for Caregivers

Jun28

Memory Lessons: A Doctor’s Story by Jerald Winakur is a must-read for all us who are caregivers for loved ones with dementias and Alzheimer’s Disease. Going Gentle Into That Good Night cannot recommend it highly enough.

This is my Goodreads review:

“What an incredible book! Dr. Winakur is a geriatric physician – old-school, steadfastly bucking against the managed care model of the for-profit companies that own medicine in the U.S. and Big Pharma, the for-profit companies who advertise magic-in-a-pill drugs directly to consumers and pay off medical providers to prescribe them – and is/was the son of aging parents, one of whom was his dad, who had dementia.

Dr. Winakur weaves the story of his philosophy as a doctor – do not harm, take the time to listen t0 and to think about each patient, we all forget, in devaluing our elderly population and shuffling them off to care facilities because we’re too busy with our own lives and can’t be bothered, that not only do we owe them our turn in the circle of life, taking care of them when they need us most just as they took care of us when we needed them most, but one day, if we live long enough, we will be them and the examples we set with our own attitudes and behavior toward them are what our children see and what they will, in turn, do to us – with the story of his family and his parents.

It is refreshing, poignant, and from the heart.

A must read!”

This is great book for all of us as caregivers. He is a doctor and a caregiver for his parents. It’s interesting to see how he deals with the same dilemmas and decisions as a son, in spite of being a geriatric physician, that we do as sons, daughters, grandchildren, sons-in-law, daughters-in-law, and spouses of our loved ones.

The Power of Music and Memories in The Journey Through Dementias and Alzheimer’s Disease

Jun18

I’ve always tracked time through music. I can hear a song and go back with photographic accuracy and precision to the exact time, the exact place, the exact month, and the exact year that I either first heard it or when it made such an impact on me that I’ll never forget it.

Usually these jaunts will prompt me to walk back through other times and places in my life – perhaps to test my own cognition – to see if I still remember them with the same level of accuracy with regard to details and precision (even down to wallpaper and house layouts in each of the many houses we lived in growing up). So far, so good.

But yesterday afternoon I heard a song that took me back to almost five years ago – July 12, 2010, to be exact – and hit me with the same effect it did when I heard it that morning.

Unexpected tears began to fall as I relived that memory and the memory I relived that day that took me even further back in time, way before dementias and Alzheimer’s Disease came to take my mom and me through its journey together.

On Sunday, July 11, 2010, in the very wee hours of the morning, my mom had the psychotic meltdown that would land her in a geriatric psychiatric hospital for almost two weeks and that would give me the grim diagnosis that she was in the mid-to-late stages of vascular dementia and Alzheimer’s Disease.

When my phone rang at 7:15 a.m. that Sunday morning, I already knew it was about Mama. The week before had been insane – with wild and dramatic mood swings, mostly negative, with each one getting more dire, and out-of-the-ballpark suspicion and paranoia – so I knew we were coming to a point where something was going to break.

Quite frankly, I wasn’t sure it wasn’t going to be me first. I was restless, anxious, unable to sleep that Saturday night, and as I paced and prayed, I kept telling God He needed to do something because there was nothing left that I could do to help Mama.

And He answered those prayers. I wasn’t at all surprised when the voice on the other end of that early morning call identified herself as someone from one of the psychiatric hospitals in the area. She said that Mama had been brought into the emergency room around 3:30 that morning (Mama had called 911) and they had determined that she needed to go to the only geriatric psychiatric hospital in the area.

The lady on the phone ask me if it was okay to involuntarily commit Mama. I said the only thing I knew to say at that point: “Absolutely.”

She then told me the procedure for going over and changing it to a voluntary commitment by me, told me what to pack for her, and told me that Mama would be there by early afternoon.

I hung up, surprised, but not surprised, my mind racing about what I needed to do that day and what I was looking at needing to do within the next couple of weeks. It was all a little overwhelming, but I tackled the tangible stuff first that I didn’t have to think about.

I went over to Mama’s apartment in the independent retirement community she had decided to move to, without ever discussing it with me, five years earlier. I opened the door and decided to pack the bag I needed for her, clean up, and make sure there was nothing pressing I needed to take care of.

I packed Mama’s bag, labeling all her clothes so that they wouldn’t disappear. Then I decided to clean the apartment, make her bed, and do a thorough inspection of everything.

In the midst of cleaning (the refrigerator, which I tried to keep an eye on, but which I’d not been able to since she had pretty much banned me from her apartment the last couple of weeks before that, made me wonder how she had not killed herself with some of the science experiments that were in there), I found a notebook that she’d accused me of stealing two days before, hidden behind the only place I did not look when searching for it the day she told me that I’d better leave because she’d called the police to come and arrest me.

I shook my head as tears rolled down my cheek for my mom. I found a couple of bills that needed to be paid, so I took them home to pay. I knew even then that she would not be able to come back to that apartment to live, so I got on her computer and sent emails to her friends and let them know she wouldn’t be back on (no details), then unplugged the cable modem (I had been paying for her internet service) to take back to the cable company the next day.

Once everything was clean, I got Mama’s bag and her purse and the important papers I needed, and anything else valuable to take with me, and left to do the rest of what needed to be done that day.

The next morning, Monday, April 12, 2010, I began the day’s to-do list with returning the cable modem and stopping the service for Mama and having that taken off my bill. Everything was still surreal, although I was going through the motions, taking care of the things I could before the first visit I could have with Mama at noon.

On the way back from the cable company, I turned on the radio and this song came on:

Immediately, my mind went back to when I was little and Mama had the radio on all the time and we heard this song in the mix of the music that was played. I thought of those carefree days and when Mama was healthy and then all the music and summer days we’d had since then played like a movie through my memory.

Then I got to the present and I was sobbing. Not only for the past, but for the reality of the knowledge that we’d never be able to go back there again. I was crying for what we’d lost for good.

That was the song I heard yesterday. It took me right back to being in that car face-to-face with a new reality for Mama and me, reminding me again of that trip down memory lane that I had taken (and which I took again yesterday). And unexpected tears streamed down my face again.

I’ve had a hard time listening to “Mama” songs since her death. For the most part, I’ve avoided them like the plague because they evoke such a strong emotional/memory response in me and my mind and my heart get consumed with a grief I can’t stop and I can’t contain.

I don’t know exactly why this song prompted and prompts such a strong emotional reaction in me. There are no concrete, specific memories, other than the one five years ago, attached to it.

There are many other songs that I do have concrete and specific memories of Mama and me attached to: U2’s “In God’s Country,” The Commodores’ “Easy,” and Kenny Rogers’ “Lucille” are among them.

Maybe “Chrystal Blue Persuasion” is just a demarcation song for me and that is why it is so powerful. It encapsulates a childhood I miss, a mom who was at the top of her game, and a world and a time I’ll never have in again in this life. Maybe that’s all it is. And maybe that’s enough.

My advice? Embrace the music. Embrace the memories. And embrace the tears.

Because that means you had – and have – love.

And that is most precious thing we take, not just through, but beyond, this journey we walk through with our loved ones.

Profiles in Dementia: Muriel June Foster Ross (1929 – 2012) – My Beloved Mama

May8

With Mother’s Day right around the corner, I decided to make this profile in dementia personal, and so I write about one of the heroes in my life, my mama, Muriel June Foster Ross.

Mama is the reason that I wrote 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 and You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

Mama is the reason the Going Gentle Into That Good Night blog exists.

And Mama is the reason why I created a Facebook support group for caregivers of loved ones with Alzheimer’s Disease, dementias, and other age-related illnesses.

My mama, Muriel June Foster Ross, was born March 2, 1929 in Erwin, Tennessee, a small town in the hollows of the Smokey Mountains in northeast Tennessee.

From the get-go, Mama had a life full of tragedy and triumph, successes and failures, bad times and good times, love and hate, deep-down sadness and uplifted-heart happiness and forgiving and forgetting, which I chronicled in the first book I wrote after her death, a memoir about my parents and us kids and our life together titled Fields of Gold: A Love Story.

My mama was a most remarkable woman in so many ways, because no matter what came her way in life, she persevered, she overcame, and she prevailed.

Mama left me with an incredible legacy and some pretty big footsteps – ironically, because Mama was a lady whose physical foot size was 4.5W while my own foot size was almost twice that big and even wider – to follow in and I see continually how far I fall short of the example she left me.

However, even in my failures, I see Mama’s legacy of prevailing and not quitting. I’ve finally been able to see that even trying and failing is doing something and that beats not failing because I’m not trying to do something any day of the week.

It’s still hard for me to fail over and over, but I find myself rehearsing Mama’s life and all the places where it looked like failure and she could’ve quit but she didn’t. And, in the end, not quitting brought incredible meaning and blessings to Mama’s life.

My mama was intelligent, curious, active, humorous, whimsical, outgoing, and loving. She had a lifelong love affair with learning anything and everything. Mama was a decent writer – she got her second Bachelor’s degree in English at the age of 54 – but she was an even better oral storyteller.

Mama’s twinkling blue eyes and her mischievous smile could light up even the darkest room. She had her dark moments, her fears, and her insecurities as well, but she reserved those for the people she loved and trusted the most: my daddy and us kids.

Mama’s journey with dementias (vascular and Lewy Body) and Azheimer’s Disease probably began in 2005. The real nuts and bolts of these neurological diseases didn’t really appear in full force and persistently until 2009. And the downhill slide was pretty precipitous from that point forward until her death (related to congestive heart failure) on August 14, 2012.

But I had the blessing of being beside Mama throughout the journey and through the end. That’s priceless. I also had the blessing that Mama didn’t live long enough to become completely uncommunicative and bed-ridden. That would have killed both of us. The journey was no picnic, but the blessing was that we shared it, and I am thankful for that.

It seems that each Mother’s Day since Mama’s death has made me miss her more than the one before. On the one hand, I’m glad Mama’s not suffering anymore. But, on the other hand, I miss her.

And not just the Mama I remember before these neurological diseases, but the Mama I remember after they appeared. There were moments interspersed with the chaos, the uncertainty, and the tough stuff that were some of the softest and gentlest and most loving moments Mama and I ever shared and those are etched just as deeply in my heart, in my soul, and in my mind.

Side by side with Daddy, Mama’s resting now in the peace that often eluded her in life until the Sun of Righteousness arises with healing in His wings.

May that day come quickly for us all. I love you, Mama. See you and Daddy soon.

Dementia of the Preoccupied: How Multitasking and Being Attached to Technology 24/7 is Creating A Dementia Effect on Society

Jan30

Neuroscientist and author Frances Jensen, in describing what normal life has become for most of society, calls what happens neurologically dementia of the preoccupied.

It’s an apt term. It’s also the brain mimicking dementia symptoms, because our brains aren’t wired to do continual rapid attention/task shifts nor is it wired to multitask.

Despite a lot of evidence that a 24/7 connection to technology (produces a neurological condition, which includes changes to the structure of the brain, known as digital dementia) and multitasking are not only damaging the brain long-term, but they also reduce productivity dramatically (the effect neurologically is exactly the same as staying awake for 24 hours or more or smoking marijuana), a 24/7 connection to technology and multitasking are still seen as badges of honor and are highly prized both professionally and personally.

The problem with multitasking is that we can’t really multitask. Neurologically, we are wired to focus all our attention on a single task and to complete it before moving on to something else. When we try to force our brains to do something they aren’t designed to do, we end up doing more harm to ourselves than good.

One harm is simply forgetting what we were doing, leaving it unfinished, or forgetting to do something we needed to do altogether.

As a result, at the end of a day, which is when we finally put that phone down, turn the digital devices off, and turn off all the rest of the technology we have going (until we open our eyes the next morning), all we have is a random, disjointed mess of incompletion. In other words, we have little to nothing concrete or finished to show for being awake for 14-16 hours.

That increases anxiety, which is damaging to the brain. It also increases stress, which is damaging to the brain.

And because we’re not getting anything accomplished, we’re constantly behind and getting further behind until we’re completely overwhelmed to the point of just quitting, so that most of what we set out to accomplish as far as things that actually mean something and are important never get done.

The modern world, if we choose to follow the crowd, is bad for our brains. I suspect that we will see more dementia-like symptoms emerging sooner in the general population in the not-too-distant future because of our addiction to multitasking and being connected 24/7 to technology.

I also expect the longer-term outcome of our multitasking and 24/7 connection to technology to be another kind of permanent lifestyle dementia among the general population.

But, as with all lifestyle dementias, we can make choices that can prevent dementia of the preoccupied, digital dementia, and the real possibility of early, permanent dementia.

But it means that we have to be willing to go in a different direction from the crowd of society, and most of us, it seems, get more short-term satisfaction from following the crowd and being part of it than we do from the conscious effort of taking care of ourselves and making changes and choices that are neurologically – and physically and emotionally – healthy.

We’re already paying dearly, in ways we may not be aware of, for the choices we’re making. The cost will only get steeper with time.

It will not only affect us in dramatic and negative ways, but also our loved ones who will end up either taking care of us because we are unable to take care of ourselves or will be forced to have someone else take care of us because they can’t meet the demands of caregiving.

We don’t have control over the external factors – and nobody really knows or will ever know what all of those are – that cause dementias and Alzheimer’s Disease. We don’t have control over genetic factors that give us a greater risk of developing these degenerative neurological diseases.

But we do have control over the choices we make in our lives that put us at greater risk for developing dementias and Alzheimer’s Disease.

It is my hope that we will all choose to take that control and use it wisely.

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