Tag Archive | Alzheimer’s Disease, Dementias, Age-Related Illnesses Caregiver Support

The Implicit Agreement We Enter Into As Caregivers for Our Loved Ones with Dementias and Alzheimer’s Disease

For many of us as caregivers for our loved ones with dementias and Alzheimer’s Disease, we choose to enter into the agreement to care for them willingly, without any compensation (we don’t expect it), aware that, in the majority of situations, we will carry the responsibility with little to no help from others and that it’s a lifetime 24/7 obligation that we’re inextricably bound to until our loved ones die.

We also enter into an implicit ethical agreement with our loved ones when we assume responsibility for their care. We promise implicitly that we will be honest and trustworthy, that we will be supportive, that we will be comforting, that we will be loving, and that our loved ones will want for nothing.

As our loved ones with dementias and Alzheimer’s Disease – parents, grandparents, etc. – did for us when we were babies and children, we promise that, with as much equanimity as possible, we will bear the burdens, carry the worries, handle the vacillations of change, and never abandon them.

The way I always look at this is that our loved ones (our caregivers) when we were babies and children didn’t know what they were getting into. They could not have possibly imagined or dreamed the things we would say, we would do, and sometimes the trouble and mischief we could find without even trying.

And, yet, for most of us, they hung in there with us, even though it was sometimes hard, sometimes maddening, sometimes frustrating, and sometimes almost unbearable (especially in the teenage years). They didn’t put us away some place, complain about the fact that no one in their families was helping out, or scream and rant and rave about us to other people (well, maybe they did to our friends’ parents when they were alone and traded horror stories about all of us, but we never saw any of evidence of that in their treatment of us).

By agreeing to be caregivers for our loved ones with dementias and Alzheimer’s Disease, we agree to do for them what they did for us. To complete the circle of life as we switch roles with them as they begin their exit from the stage of life.

How well are we living up to our agreement in all the areas that we agreed to?

Sometimes it’s necessary to just step back and evaluate the agreement we made, why we made it, and whether we are fulfilling the terms that we agreed to.

I know these diseases take a heavy toll on more than just our loved ones. I walked this journey side-by-side with my mama for several years, at first not realizing fully what Mama was experiencing, and then once I did, dealing with it and Mama according to the terms I’d agreed to.

I had my moments of anger, frustration, impatience, and fear, but overwhelmingly what I experienced was fierce protectiveness, deep compassion, strong empathy, and unconditional love. No matter what I was going through, I knew what Mama was going through was worse. The more fragile her own position became, the stronger mine became to be her comfort, her safety, and her rock – even if, at times along the way, she wasn’t, because her brain was betraying her, able to recognize that.

It was never about me. It was always about Mama. Keeping that at the front of my mind and heart at all times helped me be there 100% all the time to do whatever needed to be done to help her.

This is an imperative mindset for us as caregivers. It’s a rare mindset because it has largely disappeared in the general population that has wholeheartedly embraced the “it’s all about me” mindset.

We live in a society that has become increasingly self-absorbed, self-centered, selfish, and whiney when even the littlest of things don’t go our way. We live in a society that is easily offended and gets hurt feelings on the turn of a dime, that is quick to give up on things and people when the going gets a little rough, that is all too ready to walk away from anything that poses a threat to our comfort zone or might require a little extra work to sustain. (The irony is that this same society expects from us the things it is unwilling to be, do, or give.)

But, as caregivers, we have chosen to take the road far less traveled by. The one that says we’re in it for the long haul. The one that says our skins are thick enough that we learn not to take the effects that our loved ones with dementias and Alzheimer’s Disease exhibit personally. The one that says we love and we care to the end. The one that says we never walk away.

It’s not a road that many are willing or able to walk. But for those of us who have walked it and are walking it to the end, we find that the rewards and the lessons and the love we acquire as part of the journey are priceless. And our loved ones find in us relentless champions, unsung heroes, faithful friends, and beloved spouses, children, grandchildren, nieces and nephews who show them we love them by who we are and what we do.

So let’s never forget the promises we made, the pledges that we made, the trust, integrity, and honesty that we committed to be worthy of when we chose to care for our loved ones. Always remember that they are counting on us to honor those and if we fail them, then who will step in and fill the gap?

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Dec19

Author’s note: I originally posted this in June 2013, but I will now be reposting this every month, because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses (“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“) offers a more comprehensive list of the areas in which we can offer help and support to our loved ones).

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Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

A living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

Because of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations.

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it.

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.

Is the Precipitous Rise in Dementias and Alzheimer’s Disease Over the Last Twenty to Thirty Years Linked to Lifestyle?

Dec12

I have discussed lifestyle dementia, especially in the Baby Boomer generation and beyond, being a real concern for the near future.

One of the lifestyle factors that I discussed was improperly managed and uncontrolled diabetes. Diabetes can occur at any age, but it seems that more people in their 30’s and 40’s are, at the least, pre-diabetic, with many going on to be diagnosed with Type II diabetes. Type II diabetes used to be controlled with exercise and diet, but now typically includes non-insulin medication as part of the equation (Type I diabetes must be controlled with insulin).

One of those medications is the diabetes drug, Victoza (liraglutide [rDNA origin] injection). You’ve probably begun seeing a lot of commercials for this drug in the last couple of months here in the United States. Victoza is also being tested to see if it can slow the progression of Alzheimer’s Disease.

Personally, in addition to dementias and Alzheimer’s Disease being labeled as diabetes III, some of the new research seems to me to show a more compelling link between high blood glucose levels and the burgeoning explosion of not only dementias and Alzheimer’s Disease in the elderly population, but also in people as young as their late 30’s.

I suspect – this is my opinion – our more highly-processed food diets combined with being overly sedentary are major factors in this. I’ve spent a lot of time thinking about why over the last twenty to thirty years, we’ve seen such an explosion in these two neurological diseases.

And we’re seeing an alarming increase in dementias and Alzheimer’s Disease at younger and younger ages.

And, it is, no doubt, in large part due to a greater toxicity in our natural environment (air, water, and even big-farm-grown food, with all the pesticides and herbicides that have, with prolonged use, permeated our soil and our water supplies so that we’re eating and drinking poisons every time we put “fresh” food in our mouths).

But with this emerging link between high glucose blood sugar levels and cognitive impairment, I am coming to believe that our fast-food, “meal-in-a-box,” highly-processed foods diet combined with little-to-no regular exercise is a significant contributor as well.

Americans, especially, have some of the most atrocious eating habits in the world. Eating real meals at appropriate times during the day has all but disappeared and, in a lot of homes, eating has become whatever, whenever, and results in being the equivalent of nonstop snacking.

I’m always amazed at how much we eat out and don’t cook at home. I’m equally surprised that when we do cook at home, it’s not really cooking, but taking a box, can, or bag of something prepackaged and heating it up.

We have grown to really like the taste of processed food, fast food, and restaurant food and we don’t like the taste of home-grown food and foods made from scratch. The fast food, restaurant food, and processed food industries have made sure that we prefer their food to real food by making it high fat, high carbohydrate, and even high sugar.

McDonald’s, for instance, uses a simple sugar, dextrose, to give its french fries their unique and – I may the only person on the planet who has eschewed McDonald’s food all my life – for most people, addictive flavor .

Check your pantry, refrigerator, freezer, and cabinets right now and see how many of the processed foods in there have a form of sugar (dextrose is a common one) added. Remember that the listing order of ingredients on food packages is from most used to least used.

While our grandparents or great-grandparents had gardens and fruit trees, raised chickens and/or beef cattle (or had a neighbor who did), and worked more laborious jobs to earn a living and then spent a lot of time working laboriously at home (cleaning houses, mowing lawns with a push mower and tilling, planting, harvesting, and preserving the produce they grew), we modern westerners grow very little of our own food, preferring the boxes, cans, and bags of food at the grocery store and buy hormone and antibiotic-filled chicken and beef in super WalMarts after our 10-12 hour days mainly sitting in an office staring at a computer screen.

When we do get home, if we haven’t hired a lawn maintenance service, then no matter how small the yard, we jump on a riding lawn mower and cut the grass in a few easy sweeps. A fair number of us pay someone to clean our houses. Our other time at home is mostly spent in sedentary activities in front of computer screens, video games, and TVs.

So in many ways, although I don’t at all discount genetic factors and a very toxic planet, we westerners have adapted a diet and exercise lifestyle that very likely could be contributing to the earlier and exploding rise in cognitive impairment and decline.

As with all diseases, there are many factors out of our control, but what we eat and whether we exercise are two factors we have complete control over. When I consider everything outside of my control working against me, then I undertake very seriously anything that is within my control.

Does that mean, if I live long enough, I won’t suffer with dementias and/or Alzheimer’s Disease? Frankly, the odds are against me – as they are against you – with these diseases.

However, how I personally to choose to eat and exercise all my life may have a great impact on how long it takes and how bad it becomes. It may not, but I’d rather err on the side of caution.

I steadfastly believe that because Mama ate healthily all her life and exercised every day, even in little, short, slow increments throughout the day, with my guidance, almost up to her death, the worst of her symptoms were in only the last two years of her life.

So, what will you do differently, starting right now, with the things in life – and your lifestyle – that are in your control?

Do Extroverts Outlive Introverts?

Dec5

Like Kay, I am also an introvert (on the extreme end of the spectrum). I very much enjoy one-on-one or small-group interactions with deep and meaningful conversations, but even those suck up a lot of energy and I need recharge time afterwards.

Big groups of people, especially in non-business settings (for some reason, I can handle that better because it doesn’t require anything but me being a SME [subject matter expert], which doesn’t tax my energy reserves because what I need is automatically there and doesn’t require a great deal of effort] just overwhelm me – too much going on, too much noise, too much of everything. I get zapped quickly and easily and just want to find a quiet corner to regroup and be invisible in.

I also highly recommend Susan Cain’s book. There were points reading this where I suddenly felt tears running down my face because I realized that she was accurately describing me and that it didn’t mean I was crazy, odd, weird, or any of the other negative descriptors that the western world, which places a high value on extroversion, while considering introversion to be undesirable and abnormal – and changeable (it is not!) – ascribes to introverts.

Ironically, introverts understand extroverts (even if they drive us crazy), but extroverts, through no fault of their own other than temperament and personality, are pretty clueless about introverts. In their cluelessness, they can often be insensitive, offensive, and abrasive. Introverts will take all of that deeply to heart for life sometimes while extroverts (a) don’t even realize what they’ve done and (b) forget it as soon as they’ve done it and move on to the next energizing thing that catches their attention.

This book will help both extroverts who want to understand introverts and will help introverts understand themselves better.

To Kay’s question, I’d venture to say “yes” as long as they have an active social network and excluding all other health/life factors. Mama was more of an extrovert (although she had some introverted tendencies at times) and I’m glad she was able to have a big social network as long as she was able to handle it. However, too much of noise, people, activity as her vascular dementia, Lewy Body dementia, and Alzheimer’s Disease progressed as well as becoming even more hard-of-hearing made a lot of social activity way too overwhelming and confusing for her.

As an introvert, will I have a shorter life? If so, no complaints from me. The quality of whatever life I have left and the character I develop with God’s help is all that’s important to me, not a bunch of Ecclesiastes 12 years.

Dealing with Dementia

My Mom is calling me up to six times daily now and we have a varied conversation about the mail. On one call she will say in a disgusted voice “I’ve only gotten two letters about Dad’s passing” and then a half-hour later she’s adamant that “I’m not getting ANY mail.” Each time I direct her back to where I stacked all the letters I found dispersed throughout her apartment. Sometimes, it takes several attempts for her to find the drawer where we put the stacked the letters together. On each call, as patient as I can be, I work on finding out what specifically is troubling her as I previously discussed in the Question Behind the Question.

Today, when I asked her who she was expecting letters from she said she hasn’t gotten any letters from her girlfriends. I dug a little deeper and asked her which ones?…

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

Nov21

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

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

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

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

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

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

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

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

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

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

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

The unequivocal answer is “No!”

The Stressors of Communication, Vision, and Hearing in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease

Nov19

In “The Role of Stress for Our Loved Ones Suffering From Dementias and Alzheimer’s Disease,” we discussed the negative impact that stress has on everyone in terms of cognition, emotion, and behavior. We also discussed that this negative effect gets exacerbated when our loved ones with dementias and Alzheimer’s Disease experience stress.

In “The Stressors of Unmet Needs, Physical Environment, and Routine in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease,” we looked at three common stressors associated with dementias and Alzheimer’s Disease and practical, common-sense ways to recognize them, address them, and minimize or eliminate them as a source of stress.

This post will discuss the next three most common stressors – communication, vision, and hearing – that our loved ones suffering with these diseases experience and practical, common-sense ways that we as caregivers can recognize them, address them, and minimize or manage them as a source of stress.

It is important to say at the outset that the stressors we’ll be discussing today require some creative solutions taking the guidelines listed here because of the integral link that each of these, standing alone without prior existence (which we’ll also look at) to the development and progression of dementias and Alzheimer’s Disease, has to each other and to the diminishing functioning of the brain itself.

The first stressor we’ll discuss is communication. Issues with communication are often among the first signs of cognitive impairment with our loved ones and those issues become more pronounced as dementias and Alzheimer’s Disease progress. Common manifestations of early communication problems include:

Extensive searching for words when speaking
Misidentifying common objects (e.g., calling a pen a knife or a boy a dog) both verbally and in writing
Omitting words both verbally and in writing
Speaking and writing sentences or phrases that don’t make sense
Not totally comprehending or misunderstanding what is being heard or read

As the diseases progress, so do the communication problems, often resulting in a total inability to communicate verbally. Losing the ability to read seems to occur after this, but comprehension of what is being read generally precedes the inability to recognize written words.

Losing the ability to communicate – to express oneself in an understandable way, to participate in interactive dialogue, to understand the meaning of words – is frustrating and isolating for our loved ones suffering from dementias and Alzheimer’s Disease (it’s also frustrating and sad for us as caregivers because we so badly want to find a way to open that door wide open again), and the result of that frustration and isolation creates stress in our loved ones.

While we as caregivers may not be able to completely eliminate the stressor of communication, there are things that we can do to minimize the stress associated with it.

In the early stages, we can exercise patience in listening. This is easier said than done, but it is vital because it shows that we are interested in and care about what our loved ones are trying to communicate, instead of cutting them off because they’re taking a long time and faltering, and either completing what we think they’re trying to communicate, often erroneously, or simply dismissing them by interrupting them and saying what we want to say.

Here are a few strategies for keeping the lines of communication open for as long as possible and minimizing the stress associated with it:

Break complex ideas and tasks down into simple, understandable steps that are easy to comprehend and walk through the idea or process one step at a time. Repeating this step-by-step approach using consistent language each time, being a guide for our loved ones with each step, and going through each step at their pace will establish a routine of habits that eliminates much of the stress associated with what is essentially information overload for our loved ones.
Limit the number of options that our loved ones are presented with and make the options concrete. An example of how this would look is instead of asking “What do you want for dinner?,” ask “Do you want baked chicken or roast beef for dinner?”
For those situations where it applies, ask “yes” and “no” questions. (A caveat may be that as dementias and Alzheimer’s Disease progress, “yes” and “no” will get flipped around, so they may become an unreliable way to communicate.)
Use gestures, such as the motions of washing hands, brushing teeth, drinking something, or eating something.
For difficulties finding the right words, often times the easiest thing is to ask our loved ones to point to what they are talking about.
For sentences or phrases that don’t make sense, we should listen for meaningful words or ideas and then take those and ask questions about them to gain understanding into what our loved ones are trying to communicate.
For misunderstandings of what is being heard or read, it’s important for us to stay calm and not get defensive or reprimandingly corrective, because that will escalate our loved ones’ stress in a heartbeat. The easiest way I found to minimize this aspect of communication was to repeat what Mama had said and then ask her why she believed that or thought that. Once I gave her the opportunity to express herself and be heard, then I could find ways to gently steer her toward an accurate understanding and that eliminated both the stress of the immediate situation as well as the stress of the misunderstanding.
In cases where our loved ones are completely nonverbal, stress can be minimized by reading their nonverbal language (discomfort, pain, fatigue, etc. ) and by anticipating their needs (bathroom, food, drink, etc.).

Hearing and vision problems are often stressors for our loved ones suffering with dementias and Alzheimer’s Disease.

We discussed in detail many of the vision problems associated with these diseases in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias,” and how those vision problems (and the vision problems normally associated with the aging process) can be proportionately more severe as neurological damage increases, and we discussed ways to eliminate and minimize the stress related to those problems, so I encourage everyone to go back and read that.

Hearing is directly tied to neurological functioning as well, so as dementias and Alzheimer’s Disease progress in our loved ones, even those with normal hearing will experience auditory changes. For our loved ones with impaired hearing already, these changes are often complicated and compounded by the existing hearing loss.

Most auditory changes are in the form of auditory hallucinations – hearing someone who isn’t there – or auditory misperceptions – believing they heard something said that wasn’t said or believing they heard words said a certain way.

This causes stress in our loved ones, mostly because – and neither I nor anyone else explain definitively why this is the case – what they believe they’ve heard is negative, dismissive, rejecting, and abandoning and the fear associated with these possibilities opens their stress flood gates.

This stressor is manifested by our loved ones in the forms of verbal anger and, at times, physical anger, extreme agitation, and extreme restlessness.

The keys to managing this stressor – the best outcome is to minimize it, because since it is the product of fear of losing the most basic of human needs, it’s virtually impossible to avoid or eliminate entirely – lie with us as caregivers.

We must manage our emotions very, very carefully in both our speech and our actions, and this is one of our toughest battles in this journey with our loved ones.

Projecting gentleness, kindness, tenderness, patience, and equanamity at all times, whether we are experiencing any of those at the moment or not, is critical to minimizing this stressor for our loved ones who are suffering from dementias and Alzheimer’s Disease.

The more we can do this consistently, the more reassurance our loved ones will have that nothing negative is coming from us and that we will not dismiss them, we will not reject them, and we will not abandon them and the less fear (i.e., stress) our loved ones will experience.

Here are some guidelines on how to accomplish this:

We respond in a way that lets our loved ones know that we understand they’re concerned or afraid. Examples would be, “I know this is upsetting for you” or “I know this is scary for you.”
We reassure our loved ones that we’re in their corner. Examples would be “I’m not going to let anything bad happen to you,” or “I’ll take care of you.”
We redirect our loved ones’ attention to something else that’s positive, if possible (this sounds good in theory, but it doesn’t always happen in reality – sometimes we just have to stop at reassurance, walk away for a little while, and be sure to come back and try again later, especially if our loved ones are so worked up that there’s no calming them down nor persuading them that we’re the “good guys”).

In our next and last post in this series on stressors for our loved ones suffering from dementias and Alzheimer’s Disease will look at how physical health can be a stressor and how we as caregivers can minimize and eliminate, within certain parameters, the associated stress for our loved ones.

Gracious Goodbyes – Missed Connections

Nov18

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

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

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

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

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

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

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

The Stressors of Unmet Needs, Physical Environment, and Routine in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease

Nov7

In this post, we will look at three common areas that can be stressors for our loved ones with dementias and/or Alzheimer’s Disease and what we as caregivers can do to reduce or eliminate these sources of stress.

A source of stress for all human beings is not having our needs met. These include physical needs, spiritual needs, emotional needs, and psychological needs. Even for those of us who have no cognitive impairment, these needs are difficult, at times, to quantify and to verbalize.

For our loved ones with cognitive impairment, where thought and verbiage are tangibly disconnecting from each other, expressing needs that need to be met is even harder, if even possible. Therefore, the responsibility lies with us as caregivers to examine whether there may be needs that aren’t being met.

I strongly urge each of us as caregivers to call to conscious memory who our loved ones were before dementias and Alzheimer’s Disease took center stage. This exercise is vital in determining what needs our loved ones may have that are not being met and then finding ways to meet those needs.

So, let’s ask some questions. Was your loved one a social person who enjoyed being around people? Were faith and spiritual sustenance an important part of your loved one’s life? Was your loved one hot or cold-natured? What were your loved one’s food preferences, meal schedules, and general diet look like? Did your loved one like to exercise or not? Did your loved one like being outdoors or indoors? Did your loved one prefer a lot of light coming into the house or did your loved one prefer less light?

While this list is not exhaustive, we should be able to to see areas in which our loved ones with dementias and Alzheimer’s Disease may have unmet needs. If our loved one was always cold-natured, for example, and we keep the temperature in our homes low, then the need that needs to be met is ensuring that our loved one is warm at all times, whether that means dressing them in layers or turning up the thermostat.

Another example would be that, if our loved one was a social person who loved to be around other people a lot, he or she may be lonely or experiencing isolation as their social network disappears (this happens frequently, I believe, because of the discomfort that a lot of people experience around dementias and Alzheimer’s Disease and because communication can be difficult, so most people don’t make the effort). An easy remedy to this can be something as simple as going to sit in a bookstore, a library, or even the mall on a regular basis. Even though our loved ones may not be making one-on-one contact with all those people, we can talk with them and they can be surrounded by people and it gives the same effect.

I offer these to hopefully stimulate our creativity in safely and successfully eliminating, as far as we are able as caregivers, the unmet needs of our loved ones with dementias and/or Alzheimer’s Disease. As needs get met, there will be less depression and less apathy, which is often the result of unmet needs.

Another stressor can be the physical environment. As cognition declines, the ability to sort through complex situations to have a sense of where to go, what to do, and how to do it becomes increasingly difficult.

So let’s look at some ways that physical environment can make this even more stressful for our loved ones suffering with dementias and Alzheimer’s Disease.

Let’s take clothing (which for me, personally, has always been a challenge because of a rare aspect of color-blindness I suffer from, so I have a very limited and basic wardrobe to eliminate this as a stressor from my life). For our loved ones suffering with dementias and/or Alzheimer’s Disease, opening a closet full of clothes and shoes is a stressor. Often times, when you see someone wearing the same clothes several days in a row, it’s because the physical environment component of trying to pick clothes out of a closet is too stressful.

There are several ways to eliminate this as a stressor. One is to pare down the clothing to a few outfits and to put clothes that are meant to be worn with each other together on the same hanger. Another way to address this is to lay the day’s clothing out where it needs to be put on (for example, a daytime outfit hangs on the closet door – don’t forget the shoes! – and pajamas are on the pillow on the bed).

Why does this help? Beyond the obvious reason that it reduces stress and confusion, it can often also help our loved ones be more independent in personal grooming and dressing. Most dependence comes from simply not knowing what to do. If we as caregivers can eliminate the stressor of having to make complex choices, then we can also give the gift of more independence to our loved ones.

In many ways, this is no different from what parents do with children as they grow up to make the children more independent in taking care of their own needs as much as they are able. It reduces the stress for everyone involved, and our loved ones are no different in that respect.

Other physical environment components that can be huge stressors are clutter and a lack of organization. Remember that our loved ones with dementias and/or Alzheimer’s Disease are also experiencing visuoperceptual changes. Therefore, the more clutter and lack of organization that is in our loved ones’ physical environments, the more stress from visuoperceptual issues will affect our loved ones negatively.

Practical ways to eliminate this stressor are to get rid of the clutter and get organized. Pathways need to be clear. Get rid of unnecessary and distracting knick-knacks and other items that are just taking up space (often having too many things to look at is overstimulating and creates stress). Have all living areas organized.

For example, Mama spent a lot of time in the recliner in the living room where she could read, look outside, and we could do activities together. The end table next to the chair was organized with her hearing aids (in a case), her glasses (in a case), her Bible, and a coaster with a fresh glass of water on it at all times. Everything went in the same place every time, so Mama knew exactly where to find what she wanted or needed.

The last stressor that we’ll discuss in this post is daily routines for our loved ones with dementias and/or Alzheimer’s Disease. Unstructured or erratic routines are huge source of stress for our loved ones, in part, because they’re losing or have lost their internal clocks of knowing when to do what and they’re depending on us as caregivers to help them, and when we don’t seem to have an internal clock and schedule of when to do what, it’s frightening.

The unpredictability of something as simple as mealtimes can be very, very scary (think about when we were kids and didn’t know how to tell time and if our parents had eaten whenever the mood struck them, there would’ve been a real concern about if we’d ever eat again).

If bedtime’s at a different time every night, then our loved ones suffering with dementias and/or Alzheimer’s Disease don’t know when they’re supposed to sleep and when they’re supposed to be awake. And if our daytime routines are different every day, there is absolutely no sense of a firm foundation that our loved ones can count on and expect to happen in sequence each day.

All of these create a huge amount of stress for our loved ones. And it’s unnecessary stress that can easily be eliminated. However, it means that we, as caregivers, need to put ourselves on a schedule and adhere to it without deviation (and that can be inconvenient, at times, for us, but it’s not about us, but about our loved ones, so we just have to have the discipline to make it happen).

Once a predictable routine is established and followed, this stressor will be eliminated from the many possible stressors that our loved ones suffering with dementias and/or Alzheimer’s may have be dealing with.

A lot of this is just common sense, but sometimes we have to be reminded to use common sense because life can be quite chaotic and crazy to the point that we, as caregivers, forget to stop, step back, and ascertain what we can do to help our loved ones out. It takes time and it takes patience and it takes slowing down to their paces, but they are worth it!

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Nov7

*****

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

Adderall For Work Performance: A Lifestyle Choice That Could Contribute to Developing Dementias and/or Alzheimer’s Disease Down the Road

Nov4

I’ve discussed lifestyle dementia here before, and the premise of Stephen Petrow’s “The Drugs of Work Performance Enhancement” certainly falls into a lifestyle choice that could have negative long-term effects neurologically.

I got anxious just reading Petrow’s article, which discusses the “work-productivity” effects of taking the Attention Deficit Hyperactive Disorder drug of choice, Adderall, to “work” better. The risks associated with taking Adderall alone should scare people away from this lifestyle choice.

But what really caught my attention is Petrow’s description of the immediate effects of taking it and then the aftereffects:

“While the medication did wonders in prompting me to write, it inexplicably interfered with my ability to speak, scrambling my thoughts before they’d come out of my mouth. (I learned never to take a dose if I were to be out in the world anytime in the next four to six hours, otherwise I either spoke too quickly or too garbled.)”

It’s important to note that speech is commonly one of the first signs of cognitive issues.

As I writer myself, I understand the chaos and the immense struggle sometimes to pull all the research and thoughts in my head together to present a cogently, well-organized, well-presented final outcome.

Some days it’s impossible (and you just accept it and go on to something else), and other days everything flows.

In reality, though, in the bigger picture, that’s kind of how life goes too. Some days work well and effortlessly and other days are just an uphill battle every step of the way.

By tampering with and altering what seems to be the normal ebb and flow of how we humans operate in every area of life, in my opinion, is tantamount to playing God without being God (a very dangerous proposition of and by itself), and is possibly increasing the risk of developing, if not dementia, debilitating cognitive problems later in life.

Adderall is an amphetamine. From Medical News Today, here is a description of the effects of amphetamines:

Amphetamines have the following short-term effects on humans:

Heart rate increases
Raised blood pressure
It can be an appetite suppressant (you eat less)
They make you feel happy (euphoria)
They make you feel more in control, alert, able to concentrate on things better
They reduce the sensation of fatigue
There may be a positive effect on self-esteem and self-confidence
The patient may become more sociable

However, after long-term use, the following may occur:

The feeling of power and superiority may become a problem
Increased anxiety
The individual may suffer from insomnia
Restlessness may increase
Some people can develop paranoid psychosis (chronic or high doses)
There may be hallucinations
The person may experience tremors
There may be undesirable weight loss
The individual’s behavior may become more aggressive and even violent

Many of the long-term effects are the same symptoms associated with dementia, and perhaps are indications of the neurological damage associated with dementia that can be specifically tied to the use of amphetamines.

So while, as Stephen Petrow claims, there may seem to be short-term benefits to using Adderall to enhance work performance (I don’t agree with this at all), it is a lifestyle choice that presents the real possibility of long-term negative consequences neurologically.

Most of the current elderly sufferers of dementias and/or Alzheimer’s Disease do not have a history of lifestyle choices that contributed to their neurological and cognitive impairments, although it is my opinion that the chronic stress of the exponential speed of change associated with technology along with living on a toxic planet, breathing toxic air, and eating and drinking toxic food and water are two major contributors to the increasing numbers of dementias and Alzheimer’s Disease sufferers we are seeing now.

However, it is very likely, given the increased trend toward lifestyle choices that are targeted specifically toward affecting and altering cognition, that the next wave of dementia sufferers will be largely populated with these people who have voluntarily chosen to chemically manipulate the landscapes of their minds.

It is certainly food for thought.

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