Tag Archive | Dementias

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

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.

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!

The Role of Stress For Our Loved Ones Suffering From Dementias and Alzheimer’s Disease

Nov1

In the fall of 2013, I took the “Care of Elders with Alzheimer’s Disease and Other Major Neurocognitive Disorders” course, which was taught by the John Hopkins School of Nursing. This course is designed for both individual caregivers at home as well as caregivers in a community setting like assisted living facilities and nursing homes.

If you are a caregiver at home for a loved one suffering from dementias and/or Alzheimer’s Disease, I strongly urge you to take this class. It’s free (health professionals can pay a nominal fee to get a certificate and CEU credit for the course) and it’s got a lot of really good information.

Before I talk about the stress effects on our loved ones who suffer with these neurological diseases, let me talk about the course itself. The approach for care being presented by the course is, unfortunately, in my opinion, still largely confined to the halls of academia.

I have never seen the comprehensive – and sensible and workable – and integrated approach to care that is patient-centered this course emphasizes being done in practice in professional (physicians, nurses, hospitals, etc.) and community-based (assisted living and nursing home) environments.

That, in my opinion, is a major shortcoming and flaw in American health care and in the way America treats its elders – as a business commodity off which they make large profits with little effort and little concern, instead of as people who’ve given the best years of their lives to others – their families, their jobs, their country of residence (federal and state taxes, social security, Medicare, etc.) – and who should now be treated with dignity, honor, and respect.

Ironically, though, it is among the individual caregivers of loved ones at home that you see this model that John Hopkins is outlining for care of elders with Alzheimer’s Disease and other major neurocognitive disorders in practice. Not all, but in some.

I certainly know this model was the one I used with my mom. She was the priority. Not me, not anything else, and maintaining her dignity and showing her unconditional love, honor, and respect was paramount. I enforced it with the health care professionals on our team, and those who didn’t or wouldn’t make Mama the priority and treat her with dignity and show her the honor, respect, and love that she deserved were quickly fired by me.

(Most of our team was wonderful, by the way, as individuals; my biggest challenge was always getting and keeping everyone on our team on the same page, and that will always be the biggest challenge for the team leader-caregiver.)

This post will talk about the physiological cycle of stress and the effect of what can become continual stress on our loved ones with dementias and/or Alzheimer’s Disease.

I will also briefly list some of the stressors that our loved ones face. In subsequent posts, I will give some tips and guidelines on how we, as caregivers for our loved ones, can reduce or eliminate some of the stressors that we have control over to alleviate as much as is within our power the sources of stress for our loved ones with dementias and/or Alzheimer’s Disease.

I had to, through observation and trial and error, learn a lot of this on my own with Mama, but because she was my priority, and her comfort, safety, and care along with the continual assurance that she was very much loved were paramount, I took the time (one of three key components missing in a lot of caregiving – the others are patience and slowing down to our loved ones’ paces) to figure it out.

The physiology of stress begins in the brain as a chemical reaction to a demand (real, possible, or perceived) that exceeds a person’s ability to adequately cope.

Stress initiates survival-oriented behavior, which is necessary for surviving acute danger. The neurological response is to turn off the prefrontal brain cortex, which is responsible for intelligent and insightful behavior because we don’t have time to reflect on a course of action in the face of an immediate threat. Instead the “survival centers” in the midbrain take over and cause the brain to react instantly in an instinctive way (the fight-or-flight response associated with lots of adrenaline being released).

The picture to the right shows the brain in low and high survival-behavior modes. Note the “holes” in the second image of the picture. These are not actual holes in the prefrontal brain cortex, but are areas which are inactive. That’s about as good a visual of stress’s effect on the brain as you can get.

In every situation where we feel stress, the following reactions occur:

Cognition is disturbed and can be impaired
Emotions are disturbed and can be impaired
Behavior that may adversely affect well-being

An example of cognition being disturbed and impaired is that often in the most intense moment of a stressful situation a condition I’ve always heard referred to as “brain freeze” (inability to think, remember, recall anything for a short period of time) can occur. The brain just locks up. For those of us who are not cognitively-impaired already, that’s a scary situation. Imagine how much more frightening it is for our loved ones who are cognitively-impaired by these diseases.

We have all seen and experienced the intense emotional disturbances and impairments of stress. One example is uncontrollable sobbing. Another is ferocious anger. Like cognition, this emotional disturbance and impairment is even more magnified in our loved ones when they experience stress.

An example of behavior that may adversely affect well-being on the extreme end would be suicide. However, other examples might be throwing things, flinging our bodies against something repeatedly, and self-injury like hitting ourselves or cutting ourselves with a sharp object.

This may seem incomprehensible to someone who’s never had unrelenting and long-term stress so strong that it literally creates an insurmountable and continual deep inner pain that will not go away, but this behavioral aspect seeks to override that internal pain with physical pain, which, in general, is much easier to deal with and is short-lived. However, the results can be devastatingly permanent.

For those of us who are not cognitively-impaired, getting past the action stage of the behavior component is a matter of the ability (and sometimes this is just sheer force of will) to wait it out until it passes (it’s brief, but in times of stress, will recur frequently). For our loved ones suffering from dementias and/or Alzheimer’s disease, many times this ability has either been compromised or lost.

We all know people who do well, most of the time, with a lot of stress and other people who do poorly, most of the time, with even a little bit of stress. Most of how we respond to stress depends on the coping mechanisms we’ve developed over time.

One of the immediate coping mechanisms is the ability to determine whether the stressor is real or perceived. If I see a car going 70 mph heading toward me on a sidewalk, the stress is real. However, if I believe – but don’t know – that something that would negatively impact me could happen, the stress is perceived.

Like my mom, perceived stress is something I – and maybe I’m the only one left now that she’s gone, because it’s not something I hear other people ever talk about – really struggle with and my coping mechanisms are not as good as they should be, although I’m trying to work on improving them.

Mama and I were very different in temperament in some ways, but this is a trait we unfortunately share – Mama because of her experiences, especially during her childhood, and me because I need a plan, need to clearly see the plan, and need to be able to execute the plan, and when periods of life hit where there’s no visible plan and I’m in what feels like interminable limbo hell, I get stressed to the max.

A lifetime of chronically high stress levels combined with poor coping mechanisms is now being linked, by scientific research, to a risk of developing vascular dementia (the result of strokes and TIA’s) and Alzheimer’s Disease. One of the responders to stress is a hormone produced by the adrenal gland called glucocorticoids. Repeated exposure to glucocorticoids accelerates the aging process of the brain and damages and shrinks brain tissue, which is clearly seen in Alzheimer’s disease.

This gives me more incentive to quickly and drastically improve my coping mechanisms (and I admit, so far, I’m failing way more than I’m succeeding, but I’m determined to make this happen) because I know that Mama’s poor coping mechanisms to stress played a role – not the only one – in her development of vascular dementia and Alzheimer’s Disease.

As our loved ones become more cognitively-impaired by these diseases, more and more things of everyday life become stressors (real or perceived) and their anxiety-tolerance thresholds get lower and lower, until almost anything can be a source of stress.

Since we know one of the results of stress is cognitive disturbance and impairment, stressors for our loved ones with dementias and/or Alzheimer’s Disease create even greater cognitive disturbance and impairment, in the form of more confusion, more agitation, more anxiety, more restlessness. There can be a serious and sudden decline in cognitive function because of a stressor that we may or may not be aware of. In addition, we see the emotional and behavioral disturbances and impairments in exaggerated form as well (crying, yelling, hitting, biting, and pacing are common emotional and behavioral manifestations).

However, a lot of these stressors are easily remedied or eliminated, which we will discuss in the next few posts on this topic. For now, though, I’ll list of some of the most common stressors that we’ll be looking at:

Unmet needs
Physical environments
Routines
Communication
Hearing
Vision
General physical health

We’ll begin next week looking at these specifically to see how they can be stressors and what we, as loving caregivers, can do to remedy or eliminate them as stressors for our loved ones.

What Not to Say to A Caregiver of Our Loved Ones With Dementias and Alzheimer’s Disease

Oct23

While this article gives brief explanations of what and why you shouldn’t say certain things to caregivers of loved ones with dementias and Alzheimer’s Disease (and any other chronic age-related illness), I would like to focus on being mindful of what we say to caregivers who are taking care of loved ones suffering from dementias, Alzheimer’s Disease, and/or other age-related illnesses. The human proclivity is to talk without thinking and my hope is that, with this post, we’ll all slow down, take a deep breath, and think before we speak.

As difficult as it may be to comprehend in our multitasking, “have-it-all, do-it-all,” split-second world, once we chose to become caregivers, our lives stop in many ways and we have a single focus: taking care of the loved one(s) entrusted to our care.

This has become an anomaly in our 24/7 digital, connected, always-on society. Personally, I believe it is why caregivers often find themselves alone in taking care of their loved ones. Siblings, friends, and other family just can’t slow down, disconnect, and, yes, sometimes, can’t be bothered with the labor and time-intensive task of caring for a loved one.

Agingcare.com posted a list of things not to say to caregivers of our loved ones with dementias and Alzheimer’s disease.

I always add caveats to these black-and-white statements, so please know that I understand there are many circumstances, sometimes way beyond our control, to be an interactive part of the caregiving process.

What I am talking about here are the able, the capable, but the unwilling and unrelenting people within the circle of our lives who could, but won’t step up to the plate, but who often are our most vocal critics.

But this post isn’t a diatribe against these people. There are a lot of reasons for why, some of which I and all the other caregivers out there will never understand, and accepting that is part of building character. It is what it is. Anger, resentment, and bitterness don’t hurt anyone but us and our loved ones, so please don’t let any of these take root and let them become who we, as caregivers, are.

This post is about what we all should be mindful of not saying to caregivers of loved ones suffering from Alzheimer’s Disease, dementias, and/or other age-related illnesses. It is about thinking before we speak and putting ourselves in someone else’s shoes. It is about sensitivity, care, concern, and love.

Most of the people who say some of these things listed in “11 Things You Should Never Say To a Caregiver,” have never been caregivers for loved ones and would never consider being caregivers because it would mean they would have to sacrifice their lives, give up what they want to do, put their own goals and ambitions aside – and risk losing their place and relevance in their careers, their social networks, their lives as they define them (and when a person makes the choice to be a caregiver to a loved one first and foremost, it dramatically, and not always positively, changes his or her life in all these areas both on a short-term and long-term basis).

I get that. Once upon a time in my own life, I was all about me, about my career, my success, my move up the corporate ladder. Every career move I made was a step forward, carefully planned (and blessed and allowed by God, much like Jacob in his life [reading through Genesis in the last week or so has made me realize how similar my view of myself is to Jacob’s view of himself until he hit critical mass and realized that he was the beneficiary of God’s blessings, much the same position I find myself in now]) even in spite of, many times, my arrogance and belief that it was all me – my talent and ability moving me ahead.

But always, and this was perhaps the thing that somehow, in spite of me, kept me grounded, I was deeply connected to love, responsibility, and obligation to my family, especially to my parents. Daddy and Mama sacrificed a lot to adopt us kids. They, in their own ways, both gave up more lucrative careers to build a family with us.

I bonded with these two people who chose me when they could have chosen anyone, and in spite of our rocky places, our mutual lack of understanding at times, our frustration with each other because we couldn’t find common middle ground at times, in the end, we loved each other unconditionally, and it was that unconditional love that tied us together no matter what.

So, when my time came around to complete the circle of life, I failed Daddy more than I failed Mama. I still, when Daddy was so sick, had not quite gotten beyond what I wanted and the idea that my life was all about me.

I will regret that the rest of my life and I will regret that I didn’t know what I didn’t know about what Mama was going through after Daddy died. But I didn’t know. Some lessons take time and they take longer to effect the changes that I wish could have happened sooner.

It didn’t then. It has now.

I’ve had to make a lot of peace with myself and with God (and, at times, still find myself making peace with myself and God as I realize where I let both Daddy and Mama down, unknowingly along the way) that I was younger and just didn’t get it the way it was back then. I did the best I could, although I wish I’d done better and more, in spite of the limitations of understanding, of experience, of knowledge I had then.

Time is both a curse and a blessing. In the middle of time, we don’t have a clue. We move through it blindly, occasionally having flashes of light and inspiration and understanding, but never really grasping it fully. After that time has passed, we have time to think, to reflect, to dissect, to analyze, and it is there that we gain wisdom, understanding, and often times, change for the better. It is never an easy process in either circumstance, but if we learn from it, then it brings about permanent and positive changes.

A few months before Daddy died, he and I sat down, face-to-face, at the kitchen table that had been the gathering place for our family from my earliest memories. We held hands. He asked me to promise him that I would take care of Mama when he was gone. I promised him that I would.

I knew that day that Daddy didn’t have much time left. His heart function was very low and there were no options left for him to change that. It was the last time I would see him alive. He died about three and a half months after we had that conversation.

Daddy’s death was probably the beginning point of my stepping up to the caregiving role for Mama. There was a protectiveness for both of them that I’d had since I had graduated from college, gotten a job, and was in a position to help them through the rest of their lives, no matter how or where they needed the help.

After Daddy died, that protectiveness took hold much more deeply with regard to Mama. Something in me changed and I realized I was willing to do whatever it took to make sure Mama was okay, safe, secure, and comfortable. Although it took time for me to be willing to give up everything and make Mama the physical priority in my life (and I did), the root of that decision took hold the day Daddy died.

Along the way, after Daddy’s death and as Mama progressed with vascular dementia, Alzheimer’s Disease, and Lewy Body dementia, I heard many of the eleven things you should never say to caregivers.

Fortunately, by the time I heard them on a regular basis, my commitment, my focus, my life, on a physical level, was completely dedicated to Mama being where she wanted to be (and where I wanted her to be), which was at home with me, and I actually, once I got over the initial “how could you even say that?!?” reaction I always had, learned to just let it go.

In the end, when we come to these decisions and choices with our loved ones with Alzheimer’s Disease and/or dementias, we have to get thick skins and realize that most of the things that people who have never been through this say are not malicious, not unkind, and not critical, but are simply a product of inexperience, ignorance (and I don’t mean that in a bad way – no one can know what they don’t know), and a lack of understanding.

This, for me, was where I really learned about not being easily offended, about forgiveness, about compassion, and about mercy. Good lessons. I still have a lot to learn, but I’ve made progress.

So the list of what not to say is provided here as a guide, an educational tool, an effort on my part to offer experience to those who don’t have experience, to teach those who don’t know, to provide understanding those who may not understand.

It is not a criticism. It is not a condemnation. It is simply another step to bridge the gap, which this blog, in part, was created to do, so that we all know a little more, understand a little more, and can help a little more as we interact with those caregivers of loved ones with Alzheimer’s Disease, dementias, and other age-related illnesses among our friends and our family.

The Layperson’s Guide to Alzheimer’s Disease

Jun19

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You Will Never Be the Same Again

Jun12

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Going Gentle Into That Good Night” on Amazon.com

Jun11

“Going Gentle Into That Good Night” on Amazon.com

I’m creating this blog to continue to provide practical information related to the loving care of our loved ones with all types of dementia and Alzheimer’s Disease.

I decided this was the best way to get salient information out quickly and also to answer questions as they have been coming in since the publication of Going Gentle Into That Good Night.

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this: