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For Part 4 in this series, click here.
Dementia: The Raw. The Real. The Poignant.
There are many awful ways to die. But dementia is one of the worst.
While I'm no expert on the subject, dementia has become a part of my life. At least, as a person who's had a loved one stricken with it.
My father fought dementia for approximately eight years, the last nine months of which was spent in a professional memory-care facility called Autumn Leaves.
Even though Dad was the patient, my entire family ended up fighting his dementia along with him. And if you or a loved one has been diagnosed with dementia, that battle will quickly become yours too, whether you're the patient or not.
Here are a few things I've learned from my family's experience that may help make your battle a little less surprising:
1. Explaining Dementia and Alzheimer's
Alzheimer's disease is a form of dementia, just as leukemia is a form of cancer. Dementia is the broader diagnosis, and Alzheimer's is the most common type of dementia. The distinction is important because not everybody with dementia has Alzheimer's. Alzheimer's can literally kill, whereas generic dementia does not.
2. Dementia is More than Alzheimer's
Other types of dementia include Lewy Body disease, which particularly affects muscle control, and even Parkinson's disease. These are potentially-lethal medical conditions whose causes generally have nothing to do with mental capabilities, emotional health, or other psychological considerations. People with dementia are not "crazy," although many dementia patients develop forms of depression in association with their dementia.
3. General Forgetfulness is Not Dementia
Dementia is not simply a problem with one's memory. Forgetfulness is not, by itself, a precursor nor a symptom of dementia. Forgetfulness is a normal part of the aging process. Dementia, on the other hand, is not a normal part of the aging process. It is a severe, abnormal decline in one's memory caused by as-yet-undetermined medical factors in the brain.
4. Can a Person Be Proven to Have Dementia?
How can you tell if you or a loved one has dementia? That's for a doctor to decide, but even then, the only way to prove a person has a disease like Alzheimer's is by an autopsy of the patient's brain.
5. Senility
Dad's process through dementia began with a medical diagnosis of senile dementia (senility) with short-term memory loss. Many doctors today consider "senility" to be a dated or obsolete diagnosis, but others use it as a convenient term to describe a moderate level of dementia. For years, his neurologist insisted that Dad had a generic, moderate dementia, but not Alzheimer's. It wasn't until Dad's last visit with his neurologist this past December that the doctor finally used the "A" word.
6. My Dad's Final Diagnosis
What finally convinced Dad's neurologist to diagnose him with Alzheimer's? It was a combination of factors Dad had been increasingly exhibiting for several months, including severe emotional aggravation, paranoia, difficulty with keeping his balance, and extreme forgetfulness. He'd be inside the home in which he'd lived for 30 years and not recognize anything about it. There would be several extended periods of time each day when he didn't know who Mom and I were. He was particularly belligerent, and a physical danger to himself and us. Combining all these behaviors, and considering Dad's seven years of continuous mental decline, his neurologist was convinced to make his final diagnosis. And it was the only cause of death listed on Dad's death certificate.
By way of information, we're told that Alzheimer's does not usually cause death. Usually, some other health condition, from cancer to heart disease, will be considered the leading cause of death. In Dad's case, however, he had no other health ailment. In layman's terms, his brain simply fell apart inside his skull, and eventually compromised his entire body.
7. Uniqueness
Just as each dementia patient is a unique individual, the ways dementia manifests itself in each patient are also unique. Dad's journey through dementia was affected by his physical make-up, his original personality and emotions, his background, his childhood, and all of the various environments in which he'd spent significant amounts of time during his life - such as Brooklyn, the Army, being a husband, being a son, attending church. It's the deep uniqueness of each human life, and how that uniqueness conditions that patient's battle with dementia, that makes it a difficult disease to diagnose and treat.
8. There is No Cure. Period.
And when I talk about "treating" dementia, make no mistake: there is no cure for dementia. There are medications Dad's neurologist prescribed that seemed to regulate some of dementia's worst symptoms, but nothing reduced or reversed those symptoms. Mom and I would consider Dad to have "plateaued" if a particular symptom seemed to stabilize for a while. But we never let ourselves be seduced by the possibility that Dad was being healed by those medications.
Hey - think about it: If there was some effective medication, procedure, mantra, poultice, lifestyle change, exercise, faith, or mystic out there that could cure dementia, don't you think somebody by now would have figured out a way to mass-market it?
9. Medications
What were the medications Dad took? I'm not going to tell you, because I don't want people running to their doctor with new ideas and medication brand-names to try. If your doctor is good, they'll already know what treatments out there may work best for your loved one.
I will say that Dad was on a popular patch for years, and he went through all of the successive upgrades in dosage available until his doctor at Autumn Leaves finally concluded that they'd ceased to provide any benefit. However, like all other medications, the patch has side effects that I've heard some patients can't abide. It just so happened that for Dad, those side effects did not present themselves.
10. No Proof Dementia Can Be Prevented
Oh, and by the way; just as there's no cure for dementia, there's no proven way to prevent it, either. All those people who say you need to exercise your brain? Don't count on it. Dad did crossword puzzles every day for years before his first neurologist visit. After he retired, he taught himself how to paint with watercolors. He took a class at a local college for painting with acrylics, and his artwork hangs all over his former office at home. He frequently drew little freehand sketches, wrote out Bible verses long-hand on 3x5 cards to help himself memorize them, and learned how to surf the Internet and send e-mails when in his 70's.
And that's not all. One of the gentlemen at Autumn Leaves right now is a member of Mensa, the prestigious high-IQ society. Most of the women at Autumn Leaves are former schoolteachers. There's a CPA, a lawyer, several small-business owners, and a number of high-ranking military
veterans at Autumn Leaves. These are all people who used their brains their entire lives. Except for now.
11. Diet?
Well, it's no secret that we are what we eat. And I personally suspect that many of the chemicals we put into our bodies from all of the processed foods we eat are exacerbating our chances for developing dementia as we age. However, the head nurse at Autumn Leaves is from Kenya, and when I asked her about the rates of dementia in her home country as compared with the United States, she said that while dementia is rare in Kenya, so is old age itself! In other words, we Americans - with our processed foods - have a much longer life expectancy than people in those parts of the world with fewer processed foods. So don't bet on diet as your salvation from dementia.
12. Some Manifestations of Dementia
As for the various ways dementia expresses itself, consider that the Mensa member now unzips and urinates wherever he wants to - or needs to. The CPA now wanders around mumbling incoherently, carrying decorated throw pillows from one part of the facility to the other, all day long. One of the small-business owners waits at the "bus stop" (part of a hallway near the lobby) most evenings for the bus to Maysville, Oklahoma. And the lawyer? I won't tell you what I saw him doing with an eager female resident one evening in the atrium.
One resident claps instinctively whenever she hears music (including the lobby's doorbell chime), but she almost never talks. Another used to be an accomplished pianist, but even in the short period of time she's been at Autumn Leaves, we've seen her distinct decline, from playing often and quite proficiently, to barely being willing or able to play her favorite piece, "Walking in a Winter Wonderland." One short, petite woman who looks like she'd be a sweet grandmotherly type can curse worse than a sailor. Actually, when they're riled, most of the residents at Autumn Leaves - even my dear Dad - spew vulgarities without the slightest inhibition. Indeed, propriety and decorum are some of the social controls that dementia permanently disables in its victims, often with awkward and embarrassing effects.
13. When is Professional Care Advisable?
When should a dementia patient be placed in professional care? Well, obviously, that depends on the individual patient and their family. Some facilities offer "senior daycare," but changing the schedule and environment with daycare arrangements for dementia patients can compound their problems instead of alleviating them. Particularly in the early years of their dementia, patients need stability, normalcy, consistency, and as much of a continuation of the best environments of their past existence as possible. Another factor complicating senior daycare is "sundowning," which happens late in the afternoon as daylight begins to dim. Mornings may be one thing, but changing the environment of a dementia patient at the end of your workday could present a host of challenges that will make senior daycare unworkable.
For seven years, Mom kept Dad at home, and during that time, it was not only the most affordable option, but logistically, and considering his mental and physical health, it was the most logical one. Of course, some dementia patients have nobody at home to care for them. Some dementia patients who have been highly social during their pre-dementia lives intrinsically benefit from the stimulation of being around lots of other people, even if they're all stricken with dementia.
What you want to avoid is placing a dementia patient in an environment where they could either be ostracized by other residents for having dementia (such as a conventional assisted-living or nursing home), or where they could be preyed upon by younger, stronger, more psychotic residents (such as most Medicaid facilities, which along with prisons have become America's new psych wards). After all, dementia doesn't mean you've got mental problems; it means you have memory problems. There's a big difference.
I developed my own rule of thumb after watching a room full of dementia
patients eat: If your loved one can complete a meal in a dining room
with other dementia patients, then they're a suitable candidate for
living in a memory-care facility.
For years, Mom and I were able to re-adjust ourselves to Dad's steady decline as he reached each new stage. However, last fall, his belligerence and paranoia became significant both in terms of their profundity, and how long each episode would last - sometimes three or four hours at a time. His lack of logic was confounding. He refused to cooperate during showers, for example, stretching a 5-minute task into a 45-minute-long ordeal, with temper tantrums that baffled us even more than they saddened us.
Then there was his paranoia. At least twice, he became convinced I was about to murder him. He'd verbally pray to God a sort of prayer of committal for himself, quivering in utter fright as I tried to assure him that I had no intention or desire to hurt him in any way. Sometimes he didn't know the way around his own home. We had the police out to the house - on his orders! - three or four times last fall, because he said he only trusted the cops. However, when he began to argue with and threaten the officers, that's when we stopped calling them.
Finally, the neurologist told Mom that for her own sake, as well as Dad's, it was time for us to place him in professional care. And moving him from home wasn't easy for us. One of the major deciding factors to do so, however, was that since Dad really didn't know where "home" was anymore, an unfamiliar environment like Autumn Leaves didn't have the impact for him that it would have had earlier in his dementia journey. I would say that when you've reached that point - where they don't know where "home" is anymore - you've come to another benchmark where professional care may be the better option than family care.
14. Dementia's Ugly Process
Throughout your family's journey with dementia, you'll learn very quickly how things that may seem to make your life easier will not do so if they don't make your loved one's life easier! One of the hardest lessons to learn about dementia is that everything soon centers around the dementia patient. And that's not something the dementia patient shrewdly contrives, no matter how selfish a person they might have been pre-dementia.
Dementia is a process by which an adult becomes like a child again; it's development in reverse. Complicating matters, of course, is that the dementia patient can't
learn anything; their current behavior is almost completely predicated
on their past. A child should be able to build a successive pattern of behavior based on learned outcomes of past behaviors. Meanwhile, a dementia patient operates solely on what they can remember as being habitual - something they've already learned years before. But an increasingly malfunctioning memory is the hallmark of dementia. Therefore, just as you ascribe more autonomy to a young person as they become an adult, inversely, you have to assume more control over the care of an adult stricken with dementia.
For example, the CPA's husband had an expert gauge her mental ability, and the expert figured the former accountant, who spent her career at a major national bank, currently has a brain functioning at the level of a two-year-old. Meanwhile, biologically, she's in her late 60's. And she's had dementia for approximately 10 years, meaning her husband discovered she had it when she was in her late 50's.
That's pretty young, isn't it? That's one of the scariest things about dementia in general, and Alzheimer's in particular. Of all the 47 residents at Autumn Leaves, I'd guess their average age to be somewhere in the high 70's. Not the 80's or 90's, as one might expect, seeing as how dementia is generally considered to be an "old person's disease."
One resident, yes, is in her early 90's, quite spry for her age, and able to carry on a fairly logical conversation, at least if the topic is something with which she's been familiar most of her life. Then there is the CPA, who can barely talk at all, or another resident in her late 60's who softly cries most of the time.
Then there's Vivian, a former Navy WAVE, a proud veteran of World War II. Although now in her late 90's, she's as saucy as a wheelchair-bound dementia patient can be, thanks likely to her years of military service in her youth.
The first time we met Vivian was a Sunday afternoon, and Mom and I were visiting Dad in the TV room at Autumn Leaves. The thing about Vivian is that one usually hears her before ever seeing her - Vivian's voice is shrill and distinctive. That Sunday, she was invisibly bewailing her state as a resident of this home with too many hallways. Eventually she pulled herself along in her wheelchair, around the corner, and into the TV room, where some men were dozing as a football game played itself out on the big screen appliance.
"You spend all your life, working hard for your money, getting stuff, and then they put you here, and take it all away!" Vivian was hollering to nobody in particular, although everybody heard her.
Oddly enough, considering how much Mom was paying for Dad's care at Autumn Leaves, Vivian's point was true and accurate. I told Mom later: "that Vivian is a lot more with-it than people give her credit!"
Of course, it was the wheelchair-bound Vivian who, every time I saw her in the dining room, threatened to climb up onto one of the tables and dance.
"Oh, she's always saying she's going to do that," one of the resident schoolteachers would playfully scoff, "but she never does... thank goodness!"
That's another thing I've learned about dementia: You've gotta take those meager reprieves from its horror wherever you can find them.
_____
PS - Here's the real deal: Perhaps you've discovered those smiley-faced soothsayers online or in self-help books who coo about all of the wonderful strategies you can use to combat various negative behaviors exhibited by dementia patients. Well, you can try all of those cute ideas, and maybe some of them will work on some patients.
But here's the down-low, dirty, nitty-gritty reality of dealing with dementia patients:
If they don't want to take a shower, or change their clothes, or get out of bed, or brush their teeth, tricks and gimmicks likely won't work. That's not being negative or depressive, that's simply stating reality. Don't blame yourself as a caregiver for not being able to cajole a dementia patient into doing something they truly don't want to do. Often, you'll either have to wait out the patient, change your own schedule, or otherwise accommodate the patient rather than yourself for a period of time.
Those self-help folks who come up with handy tips for frustrated caregivers are actually only adding insult to injury. "See, it works for Mr. X; you should try to make it work for Mrs. Y." But dementia care doesn't work that way. What's the easiest solution? Come to the realization that you're either going to have to force (gently, yet firmly) the dementia patient to do something they don't want to do, or you're going to have to come up with an alternative arrangement yourself.
This is why caregiving for dementia patients is so stressful.
Basically, the rule of thumb involves the degree to which the task at hand directly impacts the patient's comfort. Not their health; their comfort. For example, should you try to force dementia patients to consume medications that don't correlate with their physical comfort? Why not talk with their doctor instead, and ask why non-comfort medications are still being prescribed for a dementia patient, since dementia is an incurable prognosis?
Other tasks appear to be negligible when it comes to their comfort, but peek behind the scenes, and consider the impact not performing a certain task may have further on down the road. For example, with my Dad, he had such bad teeth, if we didn't make him brush his teeth and gargle with Listerine, he'd have soon developed significant problems in his mouth that would have become very painful for him. No, he could no longer draw the simple correlation between proper dental hygiene and a comfortable mouth, so we'd have to maintain that correlation for him. Sometimes that meant skipping the brushing and trying to get him to gargle (without swallowing it all). Sometimes it meant offering the unpleasant alternative of having me brush his teeth for him - something Dad's stubbornness wouldn't abide. After some meals, his teeth got neither brushed nor rinsed, his attitude was so bad. But we tried to make sure that happened as little as possible.
In my opinion, the objective of proper caregiving for dementia patients is for the caregiver to be suitably confident that they're doing all they can for their loved one. Nevertheless, caregivers need to remember that dementia is going to win this battle in the end, so they must be realistic about it.
It's an arduous, miserable, perplexing, morose, sad, and exhausting business - caring for a loved one with dementia. There are no shortcuts. About the only way you'll know you're doing a good job is if you're having to give up parts of yourself in the process.
