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

lifestyle dementia technology multitaskingNeuroscientist 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.

smart phone dementia lifestyleAs 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.

tablet dementia lifestyleAnd 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.

 

 

The Geopolitical Effect of Dementia: When A National Leader Has Dementia

King Salman Saudi Arabia dementia going gentle into that good nightI’ve read several news articles about the new king of Saudi Arabia, Salman bin Abdul-Aziz Al Saud, that confirm that he has dementia.

King Salman’s ascent to power is essentially a coup from rival family factions in Saudi Arabia. Alastair Crooke wrote a two-part insightful look into Saudi Arabia’s history in terms of the fundamentalism versus modern fight that has Islam as its backdrop: Part 1 and Part 2.

King Salman and his family (many of whom he has already put into power in direct opposition to King Abdullah’s express wishes for the new government) are much more closely tied to the very strict and fundamentalist Wahhabi sect of Sunni Islam than King Abdullah and his family.

These closer ties to Wahhabism could mean earthquake-like shifts in the geopolitical dynamic in the Middle East and with the West in very quick order.

But I cannot help but wonder how King Salam’s dementia will factor into the mix. My educated opinion is that King Salam will simply be a figurehead with the other people who’ve been brought to power making the actual policies and decisions.

And that’s very, very dangerous for everybody involved.

Ronald Reagan dementia 2nd term going gentle into that good nightAmericans don’t need to look too far back into their own history and Ronald Reagan’s presidency (it was clear to everyone who was around President Reagan a lot during his second term in office that he was suffering from dementia) to see this in action and how it began the continuing downhill slide of government and began the complete erosion of trust in and trustworthiness of anything related to government.

Will Saudi Arabia – and the world – experience an ever greater cataclysmic effect with another ruler with dementia at the helm?

Time will tell.

Will Poor Sleep and Sleep Deprivation Now Lead to a Lifestyle-Related Dementia Later?

restorative sleep dementias going gentle into that good nightThe answer is “probably.”

There have been several studies in the last two years on the effects – positive and negative – of sleep on the brain. They all agree on one point: to function optimally, the brain requires quality sleep and enough of it.

They also agree on another point: the way our modern society is structured, the majority of us are not getting enough sleep, and the little sleep we are getting is not quality sleep.

The fact that poor sleep and future dementia are linked is not new.

A sleep disorder known as REM sleep behavior disorder is a key characteristic of Lewy Body dementia, but the sleep disorder is often present decades before symptoms of Lewy Body dementia emerge.

In a study published in the The Journal of the American Medical Association in 2011, researchers showed a strong link between sleep apnea (sleep-disordered breathing) and dementia.

However, new research is now showing that even those of us without these two sleep disorders are getting less sleep and the sleep we do get is not quality sleep. New neurological research is showing us how important enough sleep and good sleep is for our present and future neurological help.

circadian-rhythm-sleepThe body has a natural circadian rhythm designed to promote and facilitate sleep as daylight turns into evening and then night and to promote and facilitate wakefulness as night turns into day.

Until the Industrial Revolution, which actually consists of two iterations (one in the late 18th century and the second, which was the more profound of the two, in the mid-19th century, the human race generally slept and awakened based on the body’s natural circadian rhythm.

After the second iteration of the Industrial Revolution, when crude ways to keep the lights on 24 hours a day, 7 days a week emerged, all that changed. Initially, the only segment of the population that it affected were those who were employed in factories, mines, and foundries.

factory work shift work sleep deprivation going gentle into that good nightAs textile factories, ore and mineral mines, and metal foundries remade the work day into two 11-hour shifts – generally, 7 am – 6 pm and 7 pm – 6 am – the second shift of workers were forced to ignore and work against their natural circadian rhythms to fuel the manufacturing boom, which was bolstered by a greater demand for manufactured goods throughout all strata of the population.

Although there was less concern about the workers – health, quality of life, and even death – then, there is still a significant amount of data from that period that shows most of horrific accidents (the majority of which were attributable to human error and resulted in both permanent disabilities and death) occurred during the later hours of the 2nd shift.

In the early 20th century, as manufacturing expanded into transportation, work days were again revised into three shifts – 7 am – 3 pm, 3 pm – 11 pm, and 11 pm to 7 am – with similar higher accident rates in the 2nd and 3rd shifts.

medical professionals shift work going gentle into that good nightMedical professionals in hospitals, nursing facilities, and emergency services work were the next group of people to be required to work in shifts. Additionally, of all the careers in which shift workers were employed, it was not unusual for many medical professionals to work double shifts (back-to-back shifts) to provide necessary services.

During World War II, almost all manufacturing facilities in the U.S. transitioned to 24/7 production and a 1st, 2nd, and 3rd shift to support the Allies’ efforts in the war. After World War II, as those factories transitioned back to civilian manufacturing, they kept 24/7 production and three shifts in place. 

As the Technological Revolution replaced the Industrial Revolution (also in two iterations, with the first one beginning after World War II, and the second one, which now affects every human on the planet, beginning in the late 1960’s) and the world became instantaneously and simultaneously intricately connected, the 24/7 workday began to affect almost everyone on the planet, white-color workers working late nights going gentle into that good nightincluding white-collar workers who saw their workdays – and nights – lengthened beginning in the late 1980’s.

As more and more people have been, by necessity, forced into living and working in a 24/7 environment, researchers have kept a close eye on how successful our efforts to work against our natural circadian rhythms have been.

The answer is we’re all pretty much failures at it and the results are poor quality sleep and sleep deprivation.

And like our ancestors in the Industrial Revolution, working late into the night or all night, whether in a medical facility, an emergency services department, a manufacturing facility, an office, or at home (because half the world’s awake when it’s time for people in the U.S. to go to bed), shows the same elevated risks of accidents and injuries (both work-related and non-work-related) when compared to working during daylight hours.

Here are a few statistics directly tied to shift work (if you’re an office jockey reading this, remember that this applies equally to you and all those late nights and overnights you’re working wherever you’re working them):

  • Work-related injuries increased to a little over 15% on the 2nd shift and almost 28% on the 3rd shift.
  • The longer the shift, the higher the risk of injuries: 13% higher on a 10-hour shift and almost 30% higher on a 12-hour shift. 
  • The more consecutive night shifts worked, the greater the risk of sustaining an injury (37% higher by the fourth consecutive night shift as opposed to 17% higher by the fourth consecutive day shift).
  • Almost 50% of the late-night (10 pm – 1 am) and early-morning (5 am – 8 am) car accidents – fatal and non-fatal – involve drivers who are driving to or from work.

Pretty scary, huh? And, yet, despite all the evidence that it’s a really bad idea, a dangerous idea, and a dumb idea, we, as a society, keep doing it. I won’t get in-depth into the reasons for that here, except to say that they are tied to greed and competitiveness, which are soul issues.

What is the biology behind the statistics above?

That we can answer. And I’ve had more jobs than not where I worked 10-12 hours on a Sunday-Thursday night schedule, where I’ve worked many late, late nights only to be back at my office first thing the next morning, and where I’ve pulled many all-nighters, so I’ve got a lot of firsthand experience to bring to the table.

The reality is that unless you’re physically exhausted – mental exhaustion actually keeps the brain in gear and is totally counterproductive – you can’t get any real quality sleep during the day. Melatonin production is off and all the hormones to keep you awake are in action, so trying to sleep well is a losing battle.

So while you may be able to get a few hours of restless sleep, you do not go through the normal sleep cycles associated with nighttime restorative sleep.

As a result, because your brain is “foggy” when you’re awake, your response times are sluggish, and, combined with the normal circadian rhythm of sleep kicking in at night – even if you’re awake – all of these are directly tied to the increased risks of accidents and injuries during work hours at night.

The later you work at night the more likely you will have an injury and/or accident because these are the normal hours when sleep is deepest and during which you’ll be fighting sleep the most.

But the long-term effects of poor sleep and sleep deprivation are just as serious with regard to neurological health.

In a series of studies on sleep published in late 2013, researchers discovered that good sleep and normal sleep (7-8 hours at night) enables the brain to clean out the toxins – including beta amyloid proteins, which are involved in the development and progression of Alzheimer’s Disease – that have accumulated in it during the day’s mental activities. This process is so energy-intensive that it can be done only during sleep, when the brain doesn’t have anything else to do.

And here’s the thing. Perpetually skimping on sleep, for a lot of us who don’t do shift work and don’t have careers that demand a lot of late, late nights and early, early mornings on a consistent basis, is a lifestyle choice.

Technically, however, all of these types of careers, except for manufacturing work, which puts food on the table and pays the bills for people who might not be able to do so otherwise, are lifestyle choices because anyone going into these careers know the demands before they choose the education and jobs that lead to them.

And that substantially increases your risk of developing a lifestyle dementia.

digital and electronic connectivity sleep deprivedWe, as a society, are very sleep-deprived. And that includes a lot of people who are not earning their living during the night.

Much of that, in my opinion, is because we are digitally and electronically connected all the time and that crowds out the time we allocate for sleep.

A few questions should help you know if this applies to you personally.

  1. Do you watch TV for several hours in bed or do you play video games before you go to sleep?
  2. Is your smart phone or tablet beside your bed so you can check email or keep up with social media? Do you check them during the night?
  3. Are you digitally and electronically connected last thing before you close your eyes at night and first then when you awaken in the morning?
  4. Do you remember what you did at night before you got digitally and electronically connected?

If the answer to the first three questions is “yes” and the answer to the last question is “no,” then you’re making a lifestyle choice, probably sacrificing sleep (it’s important to remember that all these digital and electronic things stimulate the brain, so their after-effects stay with you for quite some time after you turn them off, and that means it takes you longer to fall asleep), to stay connected all the time to a world, that quite frankly, isn’t all that important or real anyway.

And whatever is real or important about it can wait until tomorrow. Like it did when a lot of us were little kids and there was no cable tv, there was no public internet, there were no video games, there were no personal digital/electronic devices, and there were no cell phones.

The world didn’t end then, and it won’t end now if you put all these away early in the evening and give your brain a chance to relax by playing a game with your family, listening to music that soothes your soul, getting lost in a book, or simply being quiet for a little while, using that time to meditate and reflect on your day and make plans for tomorrow.

Even though since I was born I’ve always had trouble sleeping a lot and getting good sleep when I do, I purposely shut everything down early in the evening to engage in quieter and more reflective activities and I stay away from it until I’ve had some quality time in the morning to get ready to tackle it again.

One day each week – for me, it’s the weekly Sabbath – I disconnect completely for the 24 hours between sunset Friday and sunset Saturday, and I’ve begun to move away from being connected much on Sundays as well.

I rarely have my cell phone anywhere near me and even when I do, I rarely use it. I certainly don’t want it in my bedroom with me at night.

With my sleep history, I’m already behind in this game, so I make lifestyle choices to improve my odds the best I can. It may not be enough to stave off dementias, but at least I know the choices I’m making increase the odds that, if I live long enough (I always pray I don’t…we start dying the day we’re born, so it’s pretty much all downhill from that point on), they’re either mild or short and done.

For all of us who can read this today, now is the time to start making sure we’re doing everything in our power to get enough sleep and to get good sleep when we do. That’s a lifestyle choice that only you can make for you and that only I can make for me.

It may mean some hard choices. It may mean a career change. It may mean disconnecting during nighttime from technology. It may mean looking at our lives and figuring out what’s really important in the long-term, instead of buying into the pervasive idea that now is the only important time in our lives.

But in the end, from this moment on, at least in the realm of sleep, you can do something to help yourself, but you have to decide what you’re willing to trade off now and what you’re willing to live with in the future.

 

 

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 3

elderly father adult son caregiver dementia ADThis is the last in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we discussed how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In the second post in this series, we discussed day-to-day helps in the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones

In this post, we’re going to discuss the other day-to-day areas where we can make care easier for ourselves and our loved ones in the journey through dementias and Alzheimer’s Disease.

The first area we’ll look it is how to effectively and safely address limited mobility and problematic mobility issues that arise both as a result of the progression of these degenerative neurological diseases and the aging process itself.

Because dementias and Alzheimer’s Disease affect the parts of the brain that control movement and balance, even our loved ones with no other health-related mobility limitations will eventually develop a shuffling gait and maintaining their balance when standing or walking will be difficult, increasing their risk of falls and injuries.

Our loved ones will also have a much harder time getting up and down from a seated position.

One of the most noticeable difficulties will be getting up from and sitting down on the toilet.

bedside commode going gentle into that good nightMany occupational therapists will recommend, as part of the home adaptive accessory purchases, buying a bedside commode for use when our loved ones are sick and unable to easily get to the bathroom or when – especially toward the end of life – if our loved ones aren’t completely immobile, walking any distance is too difficult.

A bedside commode will cost between $30-$40 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this will be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

Occupational therapists will also recommend using the chair portion of the bedside commode over the bathroom toilet in the interim to facility easy standing and sitting.

This is not the best option.

The bedside commode chair is wide, and often won’t fit well, especially in smaller bathrooms, and securely enough over the toilet for this application.

Additionally, the distance between it and the toilet (even with the open guard that comes with most of them) makes keeping the toilet area clean and sanitary more difficult.

So I recommend, instead, a raised toilet seat with arms. 

raised toilet seat going gentle into that good nightA raised toilet seat will cost around $60 out-of-pocket and can be purchased at a local medical supply store. However, with home health care or palliative health care, this may also be covered by insurance (Medicare or other insurance) as part of the home health care or palliative health care services and equipment.

The advantage of a raised toilet seat with arms is that it attaches to the toilet, is more secure when standing and sitting, and is more comfortable than the bedside commode chair. It is also more sanitary and easier to keep clean.

Installation is quick and easy. With the toilet seat up, the raised toilet seat is placed directly on the bowl of the toilet where it attaches securely with a large plastic bolt to the inside of the bowl.

As our loved ones progress in their journeys through dementias and Alzheimer’s Disease, they will become more sedentary than active.

This will mean sitting for long periods of time. Motor skills become more muted with neurological degeneration and a lot of the automatic sensory information that the brain gets, processes, and responds to will disappear.

Therefore, it will become less automatic for our loved ones with dementias and Alzheimer’s Disease to feel the natural discomfort of sitting in one position or sitting still for a long period of time that, when we’re neurologically healthy, causes us to automatically move and shift weight frequently when we’re seated.

This results in the increased likelihood of pressure sores and pressure ulcers developing. Once the skin breaks down in this manner, treatment and healing are difficult at best. Because of this, infection and sepsis often follow leading to death.

The most effective way to prevent pressure sores and pressure ulcers from sitting for long periods of time is to buy padding for chair foam pad going gentle into that good nightthe chair that distributes weight more evenly and that does the work of ensuring that automatic shifting of weight occurs.

The least expensive way (about $20) to do this is to put a thick (at least 4″) egg-crate-type foam pad (most come with a plastic covering to help with incontinence issues) in the chair that our loved ones with dementias and Alzheimer’s Disease spend most of their seated time in. 

These can be purchased at most big-box retail stores.

Another physiological change that occurs for our loved ones as dementias and Alzheimer’s Disease progress is difficulty swallowing (known as dysphagia). This difficulty includes liquids and solid foods, as well as medication.

Dysphagia presents two real dangers to our loved ones. One is choking. The other is aspirating food into the lungs, which can lead to the development of pneumonia. In fact, it is more common than not that pneumonia is the cause of death for our loved ones with dementias and Alzheimer’s Disease.

That’s how serious swallowing issues are for our loved ones.

However, we can help mitigate this risk by some very simple techniques that will facilitate easier swallowing and reduce the risks of choking and aspirating food into the lungs.

Let’s start with taking medication since this is usually where swallowing issues appear first in the journey through these neurological diseases.

However, before I discuss the technique that usually is helpful for our loved ones to more easily swallow medications, it is important to discuss the medications themselves and the form they are administered in.

pill cutter splitter going gentle into that good nightFirst, as caregivers, we should all have a pill cutter (also known as a pill splitter) as part of pharmacy stash. These can be pick up at any pharmacy very inexpensively.

This will come in handy when managing medications with varying dosages (such as diuretics or glucocorticoids like prednisone, which might be increased temporarily or gradually and then decreased the same way). 

However, I strongly advise against a pill crusher and crushing any medications (although assisted living facilities and nursing homes routinely ignore this when administering medications to residents with dysphagia). The reason is because there are medications that when crushed can cause serious side effects and become completely non-therapeutic.

unsweetened applesauce medication swallowing going gentle into that good nightWhen our loved ones with dementias and Alzheimer’s Disease begin to have problems swallowing medications with water or juice, the easiest and usually-most-effective way to help them be able to swallow the medication is to use applesauce (I recommend unsweetened).

Put the pill on about 2/3 teaspoon of applesauce, which goes down the throat more easily, and swallowing should be much easier.

If our loved ones have medication that come in a large pill form (potassium supplements are a good example and because they tend to dissolve in the mouth and are very bitter are not a good candidate for cutting in half), we should have our loved ones’ primary care providers (PCPs) prescribe a different form of the medication.

Some medications are available in a liquid form (potassium, for example, comes in a liquid form and can be mixed with applesauce).

Other medications are available in a sprinkle form (for example, Depakote, which is often used for mood balance in Lewy Body dementia because of the high sensitivity to anti-psychotics like SeroquelXR, is available in sprinkle form and can be mixed with food).

If a liquid or sprinkle form of the medication is not available, then we should work with the PCP to change to a smaller-pill alternative that will produce equivalent results.

As swallowing becomes even more difficult for our loved ones, liquids and solid food may need to be altered as well.

Sometimes this can be as simple as cutting up food (meat, for example, can be very hard to chew thoroughly in large pieces) into very small pieces and modifying or eliminating foods.

Easy foods to modify are vegetables. Raw vegetables and salads become difficult to chew and swallow for our loved ones as they reach this stage of dementias and Alzheimer’s Disease. Easy alternatives to ensure good nutrition are cooked beans and finely chopped vegetables, including pureed vegetables and beans dysphagiasome of the lettuces we normally use for raw salads (avoid kale and mustard greens – I use these for raw salads – because even cooked, they can be difficult to swallow).

You can also use these cooked beans and vegetables to make a creamy pureed soup. The key is to make the soup so that it approximates the texture of applesauce (not too thick and not too thin).

And I will pass this modification on as a personal note – if you want my recipe, email me at goinggentleintothatgoodnight@gmail.com – for cornbread. Crumbly, grainy, and textured breads and crackers are eliminated from our loved ones’ diets when swallowing everything becomes problematic. The reason is that they can choke and aspirate the little grains and crumbs into their lungs.

But my mama loved cornbread and I wanted to see if I could find a way to keep it in her diet. I had been doing some reading on healthy substitutions in baking (for oil, for sugar) prior to this ever being an issue, so I decided to try one of the healthy substitutions for oil – yogurt – in a batch of cornbread to see if it would change the texture from grainy to smooth. It worked perfectly (beautiful texture) and we were able to keep that in Mama’s diet (and any time we can find a way to do this, please go for it and try it!). 

Swallowing issues may advance to the point where the dysphagia diet levels need to be implemented. There are three levels in this diet, depending on badly swallowing is compromised. I have not personally used these, although I’m familiar with them.

However, this is something that a speech therapist with home health care or palliative health care is qualified to and can help and guide us through at this juncture with our loved ones with dementias and Alzheimer’s Disease.

I can’t emphasize enough how important it is for us as caregivers to have one or other of home health care or palliative health care on board as we provide care for our loved ones since they have resources, like speech therapists, who are available to walk us step-by-step through each phase or issue that we may encountered.

This is the last post in this series. If there are other day-to-day “in-the-moment” things related to caregiving for our loved ones with dementias and Alzheimer’s Disease that would make your life – and, no doubt, many others’ – easier that you would like to see discussed, leave a comment here and I’ll work with you to get you the answers and the help you need.

And please don’t forget to share this on social media. Dementias are more prevalent than ever – and will only increase from this point on – and more and more people are in the role of caregiving for their loved ones.

I often have people ask me what they can do to help and support other caregivers. All you have to do is share. I’ll do the hard lifting of research and writing. 🙂

Even if you don’t know all the people in your online networks, by sharing this information with them, you may be giving a lifeline to someone who is struggling, feeling overwhelmed, and completely alone on their journey.

We never know whose lives are crossing the path with ours. And this may be a random act of kindness that you’ll never even know you did. All you have to do it hit the Share buttons (and there is an email button for those who may not be on social media) for the social media forums you’re on to pass this information along to whoever may need it and can use it.

Thanks!

The Importance of Fitness and Exercise for Our Loved Ones with Dementias and Alzheimer’s Disease

exercise and fitness for our loved ones with dementias and Alzheimer's DiseaseExercise and fitness are important aspects of life and are beneficial for everyone, but particularly for our loved ones with Alzheimer’s Disease and dementias.

There has been significant research that shows that leading a life that is physically active and includes regular exercise can have a positive impact on overall health and well-being.

People who exercise regularly have improved levels of general cardiovascular health, stronger bones and, therefore, a reduced risk of osteoporosis. They also tend to sleep better at night and have improved strength and balance, which can reduce the fall risks for our loved ones with dementias and Alzheimer’s Disease.

Exercise has other wonderful health benefits too. Any level of regular physical exercise can have a positive impact on emotional health.

Exercise may help alleviate some of the symptoms of depression, a common condition in our loved ones with dementias and Alzheimer’s Disease, particularly in the early steps of the journey through these diseases.

Exercise can be beneficial with depression symptoms because it releases endorphins and other mood-enhancing brain chemicals. And even if our loved ones have reduced mobility or are in the middle-to-late steps of the journey through dementias and Alzheimer’s Disease, there are still ways to incorporate regular exercise into their daily routines.

Listed below are a few simple exercises for our loved ones with dementias and Alzheimer’s Disease.

Exercises Using A Chair

Seated exercises are ideal for our loved ones with dementias and Alzheimer’s Disease since they tend to have stability issues. Additionally, chair exercises are a great way to begin getting more physically active if our loved ones haven’t been for a while.

Seated exercises can help to build and maintain essential muscle strength and balance, but they are much less strenuous than standing exercises and reduce the risk of falls and/or injuries.

It’s important to use a sturdy chair with a back (I would recommend one that’s roomy with arms to prevent our loved ones from falling off sideways) for seated exercises and for us to be close by to assist if need be.

With our loved ones with dementias and Alzheimer’s Disease, it’s important to take the time to do these exercises at their pace. This includes taking the extra time to patiently coach – without expecting perfection in execution or repetition, with “good enough” done safely being “great.”

It would be ideal to begin each exercise session by breathing in as deeply as possible and then breathing out gently (if our loved ones are able to lift their arms to the side while doing this, it will help increase lung capacity, but if not, that’s okay).

We may have to coach and show our loved ones how to do this, doing the breathing exercises with them to encourage them to follow our example. Repeat this up to a maximum of ten times.

1st exercise (shoulder rolls): Lift the left shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Then, lift the right shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Alternate between the left and right shoulder up to ten times.

2nd exercise (neck strength): In the same sitting position, tilt the head back. Following the same breathing pattern as before, breathe in as the head is tilted back, then breathe out the head moves forward. Then, breath in as the head is turned to the left and breath out as the head is turned to the right. Repeat, alternating between back and forth and left and right up to ten times.

3rd exercise (sitting march): Pace can be as slow or fast as is comfortable. Lift the right knee up and breathe in; put that same foot down and breathe out. Repeat the same process with your left leg. Alternate between left leg and right leg up to twenty times.

4th exercise (leg stretches): Extend the left leg fully, breathing in as it’s extended, and breathing out as it is bent. Repeat with right leg. Alternate between left and right legs up to ten times.

5th exercise (ankles): Cross the left leg over the right leg, and rotate the left foot. Then, cross the right leg over the left leg, and rotate the right foot. Alternate between left and right foot, breathing rhythmically throughout, up to ten times.

Exercising to Music

In the early steps of the journey through dementias and Alzheimer’s Disease, our loved ones may be able to do slightly more strenuous exercises around the home, such as gardening, walking up and down the stairs or even dancing.

Exercising to music can make the activity a much more enjoyable experience. Since listening to music can also be beneficial in many ways for our loved ones with dementias and Alzheimer’s Disease, incorporating music into daily activities like exercise makes perfect sense in our overall care strategy.

going gentle into that good night divider

This is a guest post by Helen Bowden, fitness trainer and nutritionist with experience in dementias and Alzheimer’s Disease 

United States Hospice Agency Report Card 2015

In “The Layperson’s Guide to Hospice Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” I gave a comprehensive discussion about how to choose and what to look for in hospice agencies when the time comes that our loved hospice report card united states 2015ones with dementias and Alzheimer’s Disease need comfort care and gentle and compassionate assistance with the dying process.

The Huffington Post, on January 8, 2015, had this article, which includes interactive maps for each state in the United States where state inspection data was available, giving detailed report card information for American hospice agencies. 

Here Are the Hospices That Break the Most Rules” is a must-read.

Do You Know And Have You Prepared What You Need To Ensure That You And Your Affairs Will Be Well-Taken Care Of When You Need Help?

financial legal medical documents power of attorney going gentle into that good nightEvery few months, I write a post on the immediate need for everyone – no matter what their age, their health, or their life circumstances – to know and understand the vital information that needs to documented (and executed in terms of legal documents) and communicated to their designee when they are unable, either temporarily or permanently, to take care of their own affairs.

This includes digital access (email accounts, online bank accounts, retail accounts, etc.) documentation as well as legal, medical, and financial documents everyone needs to have in place when we need help or can’t take care of our own affairs in this area.

I am extremely puzzled by the fact those most people put this off and avoid thinking about it or doing it. It’s illogical and it is really cruel to those whose laps it ends up in.

I can’t tell you how many stories I’ve heard about a family member – especially parents of grown children – being incapacitated with life and death in the balance and because nobody ever talked about this contingency and no documents – living wills and/or DNRs – exist, there’s no clear decision-maker and the ability to let go (taking off life support when there’s no chance of recovery) is long, hard, and gut-wrenching on the family.

And the one who didn’t take the time to spell out their wishes suffers terribly and needlessly, not to get better, but essentially just to run up a meaningless huge debt that will decimate their estate and perhaps ruin the financial health of those they leave behind. 

None of is guaranteed our next breath, a healthy life with no life-changing accidents and diseases, nor a healthy mind for as long as we live. Things could literally change 180% for any of us and our families and loved ones while we’re reading this sentence. Yet, of all the things it seems that we humans deceive ourselves about, this seems to be the top “It won’t happen to me.”

But the reality is that it will.

If not sooner, then later.

And the most selfish and irresponsible thing that we can do to our families and our loved ones is to not be prepared ourselves and to not ensure that we have designated and prepared the decision-makers we choose in advance.

This is one of the greatest acts of love and one of the biggest blessings we can do for and give to those closest to us and whom we love the most.

to be prepared is half the victoryAll of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

With the precipitous rise in dementias overall, which may be in part related to a more toxic planet, more toxic water, and more toxic food, and the burgeoning number of lifestyle-related dementias that are emerging, the odds are not in our favor that every single one of us, in time, will not suffer from some sort of neurological degeneration. 

Who is going to help us when this happens?

And even if you or I are the exception to the rule, we’re still going to die. Everybody dies.

You can ignore it, you can deny it, you can live in some fantasy world where you refuse to think about it ever, but it doesn’t change the reality that it will happen to you and me.

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

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

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

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

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

I did my first will and living will shortly after I turned 21. I review and update, if necessary, both of those when my circumstances change or 12 months have passed. I have a signed and notarized DNR.

I have complete documentation on my digital footprint, as well as other financial, medical, insurance, property, and notification (for death) documentation that I keep updated as well.

I have detailed instructions regarding my funeral service and my burial.

Do you?

If not, why not?

What are you going to do about?

When are you going to do something about it?

What if tomorrow never comes?

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 2

mother daughter care love going gentle into that good nightThis is the second in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we looked at how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In this post, we’ll look at the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones

The progressive neurological damage of these diseases can affect our loved ones in several ways in the areas of bathing and personal grooming, which may necessitate accommodations for them in these areas. 

Before we discuss those in detail, it is imperative that we always respect the dignity of our loved ones with dementias and Alzheimer’s Disease, and that we give them as much autonomy and independence in all areas of their lives, including these, as is safe.

Dignity is not negotiable. Our loved ones deserve that at all times and we owe them that at all times. Being more dependent and less able to take care of themselves is hard enough on our loved ones, but to not respect and maintain their dignity is humiliating and devastating.

Our loved ones with dementias and Alzheimer’s Disease have been and are being robbed of their quality of life by an unseen or several unseen thieves in their brains. We should not be adding insult to injury by robbing them of their dignity.

Independence is also critical to the well-being of our loved ones. Safety concerns will, at times, limit full independence. However, that should be the only reason we curtail independence in any way.

Being a lot slower at doing things, being less than perfect at doing things, or forgetting how to do something but trying anyway should never be reasons why we take independence away from our loved ones. If we do, shame on us. 

The requirements of making bathing – including washing hair -easier for our loved ones with dementias and Alzheimer’s Disease will change as these neurological diseases progress.

However, there are several things that we should be aware of throughout the course of these diseases:

  • Showering or a full bath every day is hard on and can damage the fragile skin of our elderly loved ones. A good rule of thumb is alternating showering or full bathing every other day with the equivalent of a sponge bath.

  • Harsh soaps and shampoos will also damage skin, including the scalp. Baby bath wash and baby shampoo is the gentlest option for bathing and shampooing hair.

  • Skin also dries out as our loved ones age – diuretics will make skin dryness even worse – so we should make sure our loved ones are lotioned up well each day with a good hydrating lotion.

  • Bathtubs for older folks are difficult to get in and out of and present a greater danger of falls.

    If you are reading this with younger loved ones you may be caring for in the future or even with yourself in mind, please make sure that a first-floor bathroom has a walk-in shower (ceramic or fiberglass frame – a metal frame can cut), which can be adapted for even greater safety using assistive devices.

    When staying in a hotel, be sure to request a handicapped room since these have walk-in showers (which are even wheelchair accessible, if needed).

  • Make sure the bathing area is the warmest room in the house. As our loved ones get older and as dementias and Alzheimer’s Disease progress, sensitivity to cold is even more pronounced.

    If there is no additional heater built into the bathroom, use a space heater. About 15 minutes before bathing time, turn the heater on and close the door. This will ensure that the bathroom is at a comfortable temperature by bath time.

  • Have everything you need for bathing, personal grooming, and dressing ready before starting the bathing process. 

    This makes the process go more smoothly and efficiently and it ensures that we don’t have to leave our loved ones unattended – with the possibility of falls and/or injury – during the process.

  • Water temperature is crucial and we must ensure that it’s not too hot or too cold. Run the shower (or sponge bath water) until it is on the warmer side of lukewarm as a general guideline. 

  • The sensation of water pouring down from a shower can sometimes be frightening for our loved ones with dementias and Alzheimer’s Disease as they approach the middle and late steps of these diseases.

    My personal theory is that it’s a combination of three things: a heightened sensitivity to change (resulting in confusion and anxiety), the suddenness of it, and the feeling of being wet.

    We will notice that some days showering is not an issue and other days it’s a huge issue.

    On the days that it’s a huge issue, it’s important that we don’t force our loved ones into a situation that is frightening for them, because this will increase fear, anxiety, confusion, and disruptive behavior.

    Instead, we should opt for a sponge bath or cleanup with adult washcloths and try again another day.

baby wash moisturizer going gentle into that good nightAs far as bathing and shampoo products go for shower days, I recommend Johnson’s Moisture Baby Wash and Johnson’s Baby Shampoo.

While there are generic brands of baby body washes and baby shampoos, I found the quality inferior (i.e., they were more watered down) to Johnson’s baby products. 

baby shampoo going gentle into that good nightSince these are designed for delicate skin, they meet the bathing and the shampooing needs of our older loved ones with dementias and Alzheimer’s Disease as well.

Additionally, the shampoo won’t irritate the eyes if it drips into them. Since following directions – such as keeping eyes closed – is harder for our loved ones to do or sustain if they are able to do it, this ensures that no harsh chemicals get into their eyes while washing their hair.

disposable premoistened adult washcloths going gentle into that good nightFor non-shower days, I recommend using disposable adult washcloths. Adult washcloths are large and premoistened, usually with aloe added, and can be used very effectively to clean up. They are not flushable.

Adult washcloths can be bought inexpensively in bulk at warehouse clubs like Sam’s Club, Costco, and BJ’s (online or in-store).

A product that many hospitals use for bathing that I do not recommend is no-rinse body wash/shampoo. One reason I don’t recommend no-rinse body wash/shampoo is that I don’t find that it does a good job of cleaning and it leaves a slight residue on skin and hair. The other reason I don’t recommend no-rinse body wash/shampoo is that it dries the skin and hair out, which makes the fragile skins of our elderly loved ones with dementias and Alzheimer’s Disease even more dry and fragile. 

There are several things that we’ll need to do to ensure the bathroom and shower is safe to prevent falls for our loved ones.

Most modern bathroom floors are either ceramic tile or linoleum. Both of these surfaces are very slippery when they’re wet, so we want to ensure that the floor has an adequate amount of non-skid covering to ensure the safety of our loved ones when they are wet.

Duck Brand Hold-It for Rugs non-skid tape going gentle into that good nightRugs and oversized bath mats are the easiest and least expensive way to cover the bathroom floor adequately. It’s also easy and inexpensive to ensure that they are non-skid by applying non-skid tape to the back of the rugs or bath mats. The best product I found for this is Duck® Brand Hold-It for Rugs™, which can be purchased through many venues online or at home supply stores.

Non-slip tub/shower mats with suction cups are the usual recommendation to keep our loved ones with dementias and Alzheimer’s Disease from slipping and falling in the shower. However, my personal experience with these is that with most shower floors, the suction cups don’t adhere well and the mat moves around easily.

non-skid safety tape shower tubSo I don’t recommend these for the shower floor. Instead, I recommend non-skid strips or tape designed specifically for the shower.

The entire floor of the shower does not need to be covered nor do the strips or pieces of tape have to be right up against each other (gaps between them are fine as long as they are not wide enough to cause a slip or fall) , but you do want the primary walking surface to have enough skid-resistant strips or tape in place to ensure safety.

Like the non-skid tape for the rugs, this is very inexpensive and provides the maximum safety for our loved ones and can be purchased online at Koffler Sales Company. There is no quality difference between the 3M™ and KSC brands, but because 3M™ is a more-recognizable brand, the price for their products is higher.

As far as the safety of our loved ones with dementias and Alzheimer’s Disease goes in the shower itself, there are two additions that I would highly recommend.

One addition is a safety grab bar. There are two kinds of grab bars for showers on the market. One kind requires no hardware to install it because it uses a suction-cup locking system. The other kind requires hardware to install it (and, if you’re not handy, may require a professional to install it).

safety grab bar shower hardware going gentle into that good nightAlthough the easy-to-install grab bar is less expensive overall, I don’t recommend it for our loved ones with dementias and Alzheimer’s Disease. Because it uses a suction cup to hold it to the shower wall, with enough weight or time, it could become detached and cause a fall.

Therefore, I recommend the grab bar that uses hardware to attach it to the shower wall.

Although this presents work and a possible upfront cost for installation, it gives our loved ones the extra measure of safety for fall prevention.

shower chair with back and no armsThe other addition that I recommend is a portable shower chair.

Built-in shower seats are often small and in one corner of the shower, which doesn’t facilitate easy showering.

However, the main concern with built-in shower seats for our loved ones is that they are slippery and the fall/injury potential is great.

Shower chairs allow our loved ones with dementias and Alzheimer’s Disease to sit either during the shower or when they get tired during the shower. 

For the most comfort, I recommend a shower chair with a back and without arms.

The shower chair should be placed in the shower near the grab bar.

We should be on hand while our loved ones are sitting in the chair and we should always assist them – directing them to use the grab bar to help – getting up and down out of the chair. While the shower chair’s feet have rubber grips, the chair will move when our loved ones are standing up or sitting down. 

In the next post in this series, we will look at how to make life easier in the areas of mobility and functionality/accessibility for our loved ones with dementias and Alzheimer’s.

Coping strategies with Alzheimer’s that invokes the feelings of guilt.

This is an excellent post…many of the things that I talk about in with regard to how we as caregivers respond to our loved ones in You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease are beautifully and eloquently stated here by someone who has Alzheimer’s Disease.

You know, for me, one of the greatest blessings in my life was the opportunity to be the caregiver for my mom. I got frustrated, at times, before I realized what was wrong, but the frustration was not with my mom, but with me because I didn’t know how to make things better for her.

But I didn’t take that frustration out on my mom. Instead, it provoked me to be even more protective, more gentle, more kind, more caring, and more loving toward her. Intuitively, I knew she was scared and because I knew how fear manifested itself with her, I did my best to make sure that she knew that she was safe and comfortable and that I would never leave her.

I also made sure that her dignity and independence (one of the chapters I cover in-depth in this book) were kept intact (independence was only modified when safety was an issue, but even then I was very careful to let Mom have as much as she could handle) to the end of her life.

The way I looked at caregiving was that I was fulfilling the circle of life for my mom. She did the same things for me when I could do nothing for myself, when I was helpless, completely dependent, kept her up all hours of the night, and was finicky and fussy. She didn’t leave me. She didn’t complain. She didn’t walk away. She did everything she could to show me love, care, and comfort.

And that she deserved from me when the time came that the roles were reversed.

Gill's avatarHandbagwarrior; verbal ramblings

There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.FUNNY-FUN-FUN.COM

One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.

This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.

At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really…

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“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 15 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this last installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the last step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 15, which gives comprehensive information on how to walk the last step in the journey through dementias and Alzheimer’s Disease, which is the one that we’ll take alone without our loved ones: grief.

There is no right or wrong way to grieve. There is no time limit on grief. Grief is a process and the reality is that there will always be a hole in your heart when you lose a loved one.

Grief is also complex and complicated. We not only grieve for the loss of our loved ones, but we also grieve for all that intertwined their lives with ours because we recognize that part of our lives is over in this life.

And part of the grief process is sorting through those intertwined lives, the good, the bad, the ugly, as we reflect deeply on our time together.

Some people are able to stuff the hole of loss with busyness and lots of people and lots of things and it seems like they just picked up and moved on without blinking. They didn’t, but it looks that way.

Other people move through the process of scabbing the wound of the hole of loss more slowly, in spurts and stages that at times seem interminable and like they will never end. But it does and eventually, they find a way to move on as well.

You will find that the grieving process will tell you a lot about the people who are around you in your life.

And because death and grief necessitate one of life’s major reset phases, which includes a period of purging (not all on our part) – usually for the better, although it’s incredibly painful at the time – part of that reset phase extends to the people who are around us in our lives.

We find out who the people around us are and what we mean to them during this period.

And, although it may be sad and surprising, depending on our temperaments and personalities, many of those people will exit your life if you don’t meet their expectations and time limits on what acceptable grief looks like.

We have to accept that they were never there for the long haul to begin with.

A very small group of a few other people will hang in there with you every step of the way and beyond.

That’s your inner circle. Love them. Cherish them. And do the same and more for them as life happens to them. They’re not going anywhere. You’re not either.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9, Chapter 10, Chapter 11, Chapter 12, Chapter 13, Chapter 14, and, with this post, Chapter 15.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 15: ‘I Have a Lock of Hair and One-Half of My Heart’”

“Death and its aftermath is the last step of this journey through dementias and Alzheimer’s Disease and it is a step that we take without our loved ones.

It is often said that in these neurological and fatal diseases that we experience death twice. The first death is the loss of the loved ones we knew before these diseases. The second death is when our loved ones take their last breath.

If hospice is on board, the first phone call we make is to them. A nurse will come out and confirm death. Hospice will also contact the funeral home and will prepare the body for transport. This includes cleaning and dressing (I actually helped our hospice nurse with this).

When the people from the funeral home get there, they will make an appointment to come in and make burial arrangements (usually the next day) and they will take the body to the funeral home and start the embalming process.

Once the funeral home people leave, the hospice nurse will collect and destroy any remaining medications and there will be paperwork to sign both to confirm the medication disposal and to end hospice services.

It’s a flurry of activity that lasts several hours, and I personally found that to be just what I needed because the reality that Mom was gone was still sinking in.