A Little Appreciation Expressed Goes A Long Way to Let You Know That Your Efforts Are Not For Nothing

Sep10

As a dedicated and passionate educator, advocate, researcher, writer, counselor, supporter, encourager, and someone who has walked firsthand through the journey of dementias and Alzheimer’s Disease with a loved one who spends a lot of waking hours – as well as many hours when I should be sleeping – devoted to making sure there is no lack of practical and usable information and resources available to those who are currently going through or will be going through this journey with their loved ones, it can often seem, with very little tangible feedback (I know people are reading the blog), that I’m wasting my time and just talking to myself.

But every time I start wondering “What’s the point? Nobody cares anyway.,” I remind myself that it’s worth it if only one other person on the planet obtains the help, the information, the encouragement, the empathy, or the “one person besides me gets this” they need.

On the other hand, it is encouraging once in a while to have someone tell you that the work you’re doing is appreciated. It means as much to have a fellow blogger whose own work is appreciated to consider what you provide a source of inspiration.

(None of us is in this for recognition and praise. We’re doing it because we’ve been there and we know what you’re dealing with if you’re there now or what all of those of you who will be dealing with dementias and Alzheimer’s Disease in the future will face.

We know what it’s like to have no information, no support, no help, no nothing and to have to figure out on our own. Our efforts are to not waste the pain, but to pay it forward so that others don’t have to face what we faced.

This is a labor of love and service for the rest of the human race that we are dedicating to providing to each of you.)

I was nominated for the “Very Inspiring Blog Award” by Kay Bransford who blogs in Dealing with Dementia about the journeys with her dad (now deceased) and her mom (living and progressing) through dementias and Alzheimer’s Disease.

It’s nice to be appreciated and I would like to repay the compliment to several other bloggers. The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

Seven facts about me:

My parents were both in the medical field, and although I excelled in and loved the biological sciences (especially genetics), to my dad’s dismay, I didn’t choose the medical profession as my career. Armed with a humanities degree (with practical minors in math and accounting) and a concrete plan to start my career in technical writing, I morphed into a full and expansive career in information technology.
My mom developed dementias (vascular and Lewy Body) and Alzheimer’s Disease right before my eyes, but I didn’t have the knowledge and the resources to put it all together until it was no longer undeniable. I don’t ever want there to be another person in the world who has to go through the rapid and, sometimes, hard catch up the way I did.
I am thankful that I was able to fulfill the circle of life for my mom, even though I made mistakes along the way, and, to the best of my ability, I was able to fulfill my promise to her that I would do everything within my power and control to ensure that her “second childhood was better than her first childhood.”
Being able to provide hands-on, side-by-side care for my mom – and to walk beside and with her every step of the way to the end – was a gift from God for which I am thankful. I’d do it all over again in a heartbeat.
I learned things about myself I needed to know as I walked the journey through dementias and Alzheimer’s Disease with my mom. I learned lessons that I could not have learned any other way.
In the course of the journey – and beyond – I changed and am continuing to change for the better and matured and continue to mature into a kinder, gentler, more patient, more forbearing, more forgiving, more understanding, and more compassionate version of myself. Although I still have miles to go before I sleep, this much-needed and long-overdue upgrade, with its fixes, patches, and, in some cases, start-from-scratch recoding put me further down this road of change than I was when I started.
God gave me the gift of being able to write. If there’s praise to be given, it belongs to Him. I am responsible for using this gift in a manner that is worthy of the One who gave it to me. To the best of my ability, I strive to do that with every word that I write wherever I write it.

The blogs I nominate are:

My Neighbor Miss D – Miss D’s neighbor Nancy blogs about dementia, elder abuse, and the importance of neighbors caring for neighbors who are alone in their journeys through dementias and Alzheimer’s Disease

Lewy Body Dementia: Ten Plus Years of Care, Commentary, and Cleaning Up. – Joy Walker offers humorous and information commentary on caregiving and Lewy Body dementia

The Long and Winding Road: A Journey Through Alzheimer’s Disease – Ann Napoletan blogs about her journey as a caregiver with her mom through Alzheimer’s Disease and also works as an advocate for Alzheimer’s Disease research

Dementia and Dominoes – Pam Stephan gets two nods in my nominations and this is the first, where she shares memories of her dad, who has dementia, and caregiving challenges and solutions

Dining with Dementia – Pam Stephan’s blog with fast and easy recipes for dementia caregivers and their loved ones

The Daily Goodbyes – Cia blogs about her life with her father, who has Alzheimer’s Disease

D 4 Dementia – Beth Britton is a UK blogger providing advocacy and information for caregivers

My Demented Mom – Compelling blog that chronicles the author’s mother’s journey through dementia to death and offers great information for others on this journey

Momma and Me – Arlene shares the story of her mom’s journey through Lewy Body dementia with compassion, humor, and wisdom

Portrait of a Morbid Optimist – Katryna Ormiston’s beautiful blog – her tagline is perfect: “finding love in death” – about caring for her father through his journey with dementia

Let’s Talk About Family – Lori’s blog journals the ups and downs of family life as children become caregivers for their parents with dementia

Story & History – Theresa Hupp’s fascinating combination of her family’s, including dementia, and her journey through life and the history that accompanies it appeals to the history lover in me

Reflections on Dementia, Caregiving, and Life in General – Written by a caregiver in Singapore, this blogger offers a personal, yet international, perspective on dementia and caregiving as she goes through this journey with her mom

Creating life with words: Inspiration, love and truth – Kate Swaffer’s blog is a must-read blog on dementia, family, and hope

Memories From My Life – Pat White’s blog about caring for her mom since her Alzheimer’s Disease diagnosis in 2007 is a topical, heartfelt, and compassion story of their journey together

Thank you, Kay, for nominating me. I appreciate it, my friend and fellow traveler on the journey through dementias and Alzheimer’s Disease.

The Stressor of Physical Health in Caregiving for Our Loved Ones Suffering With Dementias and Alzheimer’s Disease

Dec6

This will be the last post in this series about the role that stress plays in our loved ones suffering with dementias and Alzheimer’s Disease.

We’ve discussed some of the most common sources of stress for our loved ones, including unmet needs, physical environment and routine, as well as communication, vision, and hearing.

This post will talk about how physical health – both preexisting conditions and and conditions that arise concurrently with or as a result of cognitive impairment and neurological damage – can be one of the most continuous and more serious sources of stress for both us as caregivers and for our loved ones who are suffering with Alzheimer’s Disease and dementias.

All disruptions in physical health cause stress for all of us. Even a simple cold in those of us who are physically and mentally healthy causes stress because it interrupts our lives, slows down our lives, and may negatively impact our lives.

A common example for a lot of people is that if you don’t get paid medical leave at work and you can’t be at work because you’re sick, then you don’t get paid, so you have less income that paycheck. Quite frankly, that’s why so many of us just suck it up and go to work anyway unless we’re on the precipice of dying (and that’s a bit of humor, so please take it that way!) and why the entire office ends up getting colds.

The weaker immune systems in the office may end with upper respiratory infections and even pneumonia because we couldn’t afford the stress of having less money in our paycheck. That’s the current reality in the United States in a lot of companies.

So if we realize how much stress illnesses and health problems cause in us, then we understand how the stressor of physical health problems in our loved ones suffering with dementias and Alzheimer’s Disease is exacerbated by the neurological impairment and decline.

Except for early onset dementia or early onset Alzheimer’s Disease (younger than 65 years of age when symptoms start), most of our loved ones are well on their way in the physical aging of their bodies and their bodies are wearing out.

Heart problems are probably the most common physical health condition that our elderly loved ones face. Heart problems can manifest themselves as anything from hypertension (high blood pressure) and atrial fibrillation (AFib) to malfunctioning valves, blocked arteries, and congestive heart failure.

High blood pressure is an interesting health stressor to look at because it can be a contributor to vascular dementia developing, yet high blood pressure is related to stress (it is actually the result of constricted arteries, so the heart has to pump harder to keep blood flow going), so this stressor is really a two-edged sword for our loved ones suffering with dementias and Alzheimer’s Disease. Stress causes blood pressure to rise and high blood pressure causes stress – and damage – to the heart and to the brain.

However, high blood pressure poses a third risk – and stressor – healthwise. As our loved ones age, high blood pressure becomes more difficult to manage medically, so often multiple types of medications are used, including statins, beta blockers, and diuretics, and some of these – especially long-term use of diuretics to pull fluid off the heart and extremities – have detrimental effects on kidney function and can lead to kidney failure.

Atrial fibrillation can be corrected in its early stages with some medications (with a lot of risks) and later with a pacemaker. However, when looking at a surgical option for our loved ones suffering from dementias and Alzheimer’s Disease, we must always consider that going under general anesthesia will always result in further cognitive decline and impairment. And that will be a post-surgical source of more stress for our loved ones.

Defective heart valves and blocked or constricted arteries will create stress for our loved ones in many ways. First, there is physical pain associated with these conditions and pain is a stressor. There is also a decreased flow of oxygen, so breathing will become more difficult. If you’ve ever had a hard time catching your breath (or suffered from respiratory problems like asthma), you know how stressful not being able to breathe can be.

But the decreased flow of oxygen also means less oxygen to the brain, which can make cognitive impairment even more pronounced, no matter where our loved ones suffering with dementias and Alzheimer’s Disease are in the course of their journeys, which is another source of stress.

I would strongly urge caregivers of loved ones who also suffer from heart problems to get their loved ones’ oxygen saturation levels tested. A continuous oxygen saturation level below 90 means that the body and the brain is not getting enough oxygen (you will find that these levels go extremely low during sleep).

Oxygen is available for home (or care facility) use and will help dramatically. A doctor has to prescribe it, but the saturation test results will make that easy. And a home health equipment company will deliver the equipment.

We used a non-tank oxygen concentrator for Mama at home and I had a portable version with a battery pack to take with us when we went out. I kept the portable oxygen concentrator charged all the time in case we lost power because I didn’t want oxygen tanks in our house (true confession: the oxygen tanks really made me nervous and I was terrified they were going to explode and kill us both and that was the only other no-electricity alternative).

Whether to surgically treat defective heart valves and blocked or constricted arteries is again a matter of weighing the overall risks with the overall benefits.

Although I strongly advise against general anesthesia with our loved ones with neurological damage and cognitive impairment, there are other surgical options that may be available to treat some of these conditions that do not require putting our loved ones all the way under anesthesia.

For example, my mom had congestive heart failure the last three years of her life, so we were both always on high alert for signs of it reaching an acute (full) stage and I got very good at knowing when we needed to do something, medication-wise, to get the fluid off her heart to prevent possible pneumonia and heart failure.

Five and a half months before Mama died, on a Friday afternoon in March (her birthday), Mama started sweating profusely and complaining of pain and nausea. I immediately started doing a medical inventory with her and trying to ascertain where the pain was and what, if anything, we could do at home to alleviate it.

When Mama vomited the first time, I asked if she wanted to go to the hospital, and she said she didn’t, but asked if I could help her over to the couch to lie down and sleep because she thought that might make her feel better.

Mama slept for about an hour with me hovering, wiping the beads of sweat off her forehead, wondering if I was doing the right thing by letting her decide to go the hospital or stay home. We’d already made the decision that she would not go back to the hospital for her heart problems, but instead would treat those at home under her doctor’s guidance.

I don’t know how I knew, but I knew this wasn’t a heart issue, but I didn’t know what else it could be. When Mama awoke from her nap, she groaned with pain and I managed to get a trash can over to her before she vomited again.

I put my hand over her heart and asked if that hurt there and Mama shook her head. I put my hand on her stomach and asked if it hurt there. Mama shook her head again. I knew she’d had her appendix out when she was 19 or 20, so I didn’t bother with her left lower side. I put my hand on her right side just below her ribs and she cried out and vomited again.

I told Mama we needed to go to the hospital and she agreed with me that time. After several hours in the ER, with pain and anti-nausea medication helping Mama with the physical symptoms, the tests the doctor had run showed that Mama had a gall bladder infection. We had to transfer at about 2 am that Saturday morning to a surgical hospital to deal with that.

The gastrointestinal (GI) doctor who came in around 6:30 am that Saturday morning told us that Mama needed her gallbladder removed. Without even worrying about the cognitive effects of general anesthesia, I knew Mama’s heart wasn’t strong enough to survive it.

I told the GI doctor that wasn’t an option because of her heart and I could visibly see the “whatever” look on his face when he very disdainfully told both of us that he could put a drain into to remove the infection under twilight anesthesia, and I’d have to take care of it for six weeks, but it wouldn’t remove the problem and we’d have to do it again within a year.

I knew the odds of us having to do it again before Mama died were slim to none, so Mama and I talked about it and we agreed to the drain. The procedure was scheduled for Sunday morning.

On Sunday morning, a nurse brought surgery paperwork into Mama’s room early for me to sign. I told her “no surgery” and I refused to sign the paperwork until the GI doctor changed it to the procedure for putting in the drain.

And even though we chose the least affecting method for Mama to do something that had to be done, it caused a lot of stress for Mama (both the procedure and the six weeks the drain was in) and it negatively affected her cognition dramatically for several weeks (she finally stabilized with a little improvement by the third week in April).

When we got home, I immediately revised Mama’s diet to include foods that would help her gallbladder and remove foods that might lead to another infection. I tried to keep a lot of fat out of our diets anyway, but I also knew that Mama had a limited amount of life left, so I indulged her love for ice cream every evening for dessert after dinner and when she told me one day she wanted “a hamburger at that place we used to go to,” I let her splurge on a Five Guys burger with the works and french fries.

But the stress of Mama’s physical health problems never fully went away after that. Even though she recovered beautifully from the gallbladder infection, the congestive heart failure was gaining ground and she was in pain with her heart frequently.

And that would increase her levels of stress, alternately making her worried – about me and the “burden” she thought she was to me (I always reassured her that she was not a burden to me and I wouldn’t be anywhere else doing anything else because I loved her) – and agitated about things.

My struggle – and our struggle as caregivers for our loved ones with dementias and Alzheimer’s Diseases along with other physical health problems – was not to let Mama’s stress get me stressed out.

Most of the time, I did pretty well managing my own stress in front of her.

But there were plenty of times where, even though Mama didn’t know it, my own stress levels from wanting to make sure she was comfortable and not in pain and that I was doing everything right and my own knowledge that the end was close even though I didn’t know what that would look like were extremely high and sustained.

Truth be told, I don’t really think even now, a year and a half after her death, my sustained stress levels have gone down. It’s seems as though I just traded one kind of stress for other – and, in my opinion, worse – kinds of stress.

(I often wonder if this is just the new normal for me. And how the effects, if I live long enough – although I hope I don’t because I don’t want to be a burden to anyone – will play out for me. I plead with God every day to end my life before I outlive my body and my brain.)

One other type of physical health stressors that are common to our loved ones with dementias and Alzheimer’s Disease are the cognitive impairment-related health issues. The two most common are pneumonia and urinary tract infections.

Pneumonia is many times listed as the cause of death in our loved ones with dementias and Alzheimer’s Disease. This is because as neurological damage increases, having trouble chewing and swallowing (automatic reflexes controlled by the brain) causes choking (a stress mechanism) and food gets aspirated into the lungs, causing infection.

Urinary tract infections can be very common in our loved ones as well. A lack of hydration can be one cause, while improper hygiene can be another cause. However, both can, at the same time, be causes. Urinary tract infections are treatable with antibiotics, so it’s imperative to start those as soon as symptoms appears.

One of the most common symptoms of a urinary tract infection in our loved ones with dementias and Alzheimer’s Disease is a sudden and sharp cognitive decline marked by profound confusion, extreme agitation, and sometimes physically aggressive behavior (a stress mechanism) where there was none before.

So, if we as caregivers observe this in our loved ones, we need to seek immediate medical treatment for them, either by home health nurses or by going to the ER.

This concludes this series on stressors and how they affect our loved ones with cognitive impairment and neurological damage. I hope it’s been informative.

I plan on doing another series in the future on some of the ways we – who are still healthy mentally and physically – can reduce or eliminate the potential stressors others might face if we get terminally ill (these are terminal illnesses) or we die.

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.

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.

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

Practical, applicable information for caregiving for our loved ones with dementias and Alzheimer's Disease

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A Little Appreciation Expressed Goes A Long Way to Let You Know That Your Efforts Are Not For Nothing

You Will Never Be the Same Again

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