Tag Archive | Dementia

Experiencing Dementias and Alzheimer’s Disease From the Inside

I recently watched The Iron Lady, the 2011 movie in which Meryl Streep portrayed Margaret Thatcher, the late Prime Minister of Great Britain. I think everyone ought to see this movie, not so much for the historical content, but to experience from the inside what our loved ones with dementias and Alzheimer’s Disease experience.

According to Mrs. Thatcher’s daughter, Carol, her battle with dementia and/or Alzheimer’s disease became noticeable in 2000 and The Iron Lady focuses on the years after the death of her husband, Dennis, in 2003.

I cannot adequately express how much insight and understanding experiencing this – and I literally felt like I was experiencing it – gave me into what Mom went through.

I also cannot begin to convey the deeper empathy, Margaret Thatcher, Prime Minister, Great Britain, The Iron Ladysympathy, and protectiveness that I experienced as well. There were many moments when I wished I could take both Mrs. Thatcher and Mom into my arms and just hold them tight and not let go.

This movie touched my heart on its deepest levels and my tears and my helplessness welled up deep within me. And, yet, it looked like – and explained – a lot of what I saw, from the outside, with Mom.

I remember the first time Mom told me that Daddy, who’d been dead for ten years, had visited her the night before and that he’d left right before I got there. Mrs. Thatcher spent a lot of time with Dennis, as the dementia/Alzheimer’s Disease progressed, after his death as well.

There is a frenetic and frenzied scene in which, in an attempt to banish Dennis for good, Mrs. Thatcher packs everything of his up in a few short hours, including a suitcase for him. He takes the suitcase and leaves for good while she is begging him not to leave just yet. It’s a very poignant scene.

One of the brilliant aspects of this movie is that it captures the mental confusion and chaos of dementias and Alzheimer’s Disease. We experience it right along with Mrs. Thatcher. And it made sense to me because it explained a lot of what I had seen with Mom. Interestingly, it didn’t bother me nor did it seem weird to me. It looked a lot like what I already knew.

But the difference was that I was finally able to walk in Mom’s shoes and know how she experienced it. That made me love her even more – if that’s possible – and it made me wish I’d known then what I know now. But maybe I can take what I learned and, as always, pay it forward.

Sundowning and the Sleep Conundrum of Dementias and Alzheimer’s Disease

Today’s post will discuss how dementias and Alzheimer’s Disease affect circadian rhythms and sleep, as well as some tips to help manage sleep disruptions effectively.

There are a lot of factors that make up our sleep behavior. I first want to discuss the biology of sleep and how, even if there are no other sleep disorders, dementias and Alzheimer’s Disease disrupt the biological sleep cycle.

Normal Circadian RhythmHumans have an internal 24-hour clock that is synchronized with daytime and nighttime (light has a profound impact on this clock). This clock is referred to as our circadian rhythm.

As people age, this clock changes so that they normally tend to go to sleep earlier and wake up earlier. Sleep disorders like insomnia and sleep apnea are more common in older people as well. But their circadian rhythms are still primarily based on light (the more light, the more wakefulness; the less light, the more sleepiness) and time of day.

However, in our loved ones suffering from dementias and Alzheimer’s Disease, circadian rhythms go out the window because the diseases impair the brain’s ability to tell time and to distinguish between light and dark as indicators of when to sleep and when to awaken. It is sometimes helpful, in the early stages, to get a 24-hour clock to help our loved ones distinguish between A.M. hours and P.M. hours, but eventually that will be a casualty of the diseases.

The most common circadian rhythm disorder associated with dementias and Alzheimer’s Disease is a phenomenon known as “sundowning.” It occurs in the late afternoon and early evening.

It is characterized by speech and behavior repetition, constant pacing , excessive restlessness, wandering, disorientation to time and place, and agitation or aggression towards others.

Wandering is especially dangerous because if our loved ones get outside, they can walk long distances with limited vision because of the sun going down, sometimes on crowded roadways, and are susceptible to being the victims of crime and vehicular death.

One probable cause of sundowning is that there is damage to the part ofSleep/Wake Patterns Circadian Rhythm the brain that produces melatonin (the sleep hormone) and the reduced production causes an irregular sleep-wake rhythm

Another theory on the cause of sundowning is related to the energy levels of our loved ones with dementias and Alzheimer’s Disease . At the end of the day they are likely tired from the day’s activities.

This can aggravate the symptoms of the diseases, making them more anxious and stressed. Before the onset of these diseases, this time of day would have typically been the busiest for them. They would be getting home from work, getting ready for dinner, doing household chores, and going to bed. Now that they’re unable to do those things, they have little to do at a time that was the busiest of the day for them.

The most common sleep disorder that occurs with dementias and Alzheimer’s Disease is an irregular sleep-wake rhythm. You can see in the graph above how disruptive this rhythm is and why our loved ones with dementias and Alzheimer’s can be so tired, in general, all the time.

However, I believe the most damaging effect of this sleep pattern is that it actually prevents the restorative/repair functions that occur during a normal sleep rhythm, which exacerbates the neurological damage that dementias and Alzheimer’s Disease do to the brain. In short, this sleep pattern makes the diseases worse.

The most effective – and safe – way to try to minimize an irregular sleep-wake rhythm is to add melatonin to nighttime medications. As I’ve said before, up to 12 mg of melatonin is considered safe, but start with a low dose (3 mg or 5 mg) and give it time to see if that gives our loved ones more continuous and restful sleep. The goal is to keep them asleep at night and keep them awake during the day. Too much melatonin can have them sleeping all the time.

I would also suggest keeping our loved ones active and busy – as they are able – during the day (I will talk more about this in another post, but will briefly touch on it here). Up until the last week and a half of my mom’s life, when she’d had the major heart attack and just couldn’t do much with me, I had her help me with the household chores that she could like making the bed, folding laundry, preparing meals, and helping me with the dishes.

I didn’t care whether it was perfect or not (initially a big challenge to my normal OCD about those kinds of things), but I found that the more she did, the better she felt and the better she slept.

There is a sleep disorder that is specific to Lewy Body dementia and is one of the primary symptoms of that form of dementia. It is called R.E.M. sleep behavior disorder.

R.E.M. sleep behavior disorder is impossible to miss. Anytime a sufferer is asleep, they are in motion acting out their dreams and, at least in my mom’s case, having sometimes understandable and sometimes not in-depth conversations. It is also characterized by “picking” at clothing or bedclothes while asleep.

On the one hand, at least for me, it was quite fascinating to watch Mom dream and act out her dreams. Apparently – and I’ve seen this with other Lewy Body dementia sufferers, so it must be common for all of us to dream about – she dreamed quite often about food, because she’d often make the motion of either eating with a utensil or with her hands to her mouth. That was usually when she was napping during the day. 

Most of her conversations occurred at night, although occasionally she’d say a line or two during a daytime nap. And they’d last all night sometimes.

Her nightime dreams also included a lot of moving around and possibly a version of restless legs syndrome (not uncommon for R.E.M. sleep behavior disorder).

While I know this had a detrimental effect on her quality of sleep, it was disruptive for me too. I have always been a light sleeper and have had my own issues all my life with not sleeping much (and sometimes not sleeping at all for a day or two) and not getting quality sleep (waking up a lot or being wide awake in the early morning hours and not being able to go back to sleep for an hour or two). With Mom talking and moving around all night, it made sleep that much more difficult for me.

An increase in melatonin helped with this as well. I bumped her up to 7 mg each night (she was at 5 mg before) and it was just enough to keep most of the symptoms at bay. There were still some nights when it was noticeable, but the worst of the symptoms seemed to be alleviated. And because she slept better, she felt better and did better during the daytime.

I hope this brief overview helps. If you have any questions or any topics you would like to see discussed here, leave me a comment or email me at goinggentleintothatgoodnight.com. If I don’t know the answer, I’ll do my best to try to find it.

You’re not alone and my intent and goal is to keep reminding you of that and help you as much as I am able.

“Fields of Gold: A Love Story” Published and Available for Purchase

My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.

Watch the publication announcement video to put some faces with the posts I write here, including that of my beautiful Mama.

I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.

Reminder About “Going Gentle Into That Good Night” on Amazon

I’m working on a couple of posts, but I went in for a full eye exam this morning and they dilated both eyes and I can barely see to type. 🙂

So, since I’m unable to finish the posts I’m working on today, I’d like to thank everyone who is following this blog. I’d also like to remind you that Going Gentle Into That Good Night is available on Amazon.com (there are print and Kindle versions).

And if you find the information here useful and helpful, I would sure appreciate it if you’d consider a small donation (there’s a PayPal button on the left menu). All donations will be used to continue to provide practical and loving caregiving for our loved ones with dementias and Alzheimer’s Disease.

Be sure, if you haven’t subscribed to email updates, to do so. Every time I update the site, you’ll get an email notification. I’m planning on incorporating different kinds of media here (nope, you won’t see me or hear me…and that’s a good thing, trust me!) because I believe that sometimes a picture is – or pictures are – really worth a thousand words.

Hope you have a good weekend and looking forward to being back with you more regularly next week!

The Layperson’s Guide to Vascular Dementia, Multi-Infarct Dementia, Small Vessel Ischemia, and TIA’s

There are many kinds of dementia. In the next few posts, we’ll take a look at a few of them, along with Alzheimer’s Disease, which is a distinct neurological diagnosis from dementias.

Before we start, it is important to note that our loved ones can suffer from only Alzheimer’s Disease or only one kind of dementia. Or they may suffer from Alzheimer’s Disease and multiple kinds of dementia. That distinction is important to loving caregiving, which includes medical advocacy for our loved ones, because each brain disease is distinct, affects the brain differently, and has specific characteristics and symptoms and treatment.

I will admit here that one of my pet peeves while caring for my mom was hearing some people who have no real knowledge of these diseases lump everyone who suffers from them under Alzheimer’s Disease and giving advice on how to deal with that, not realizing the complexity of the situation posed by the presence of both dementias and Alzheimer’s Disease.

So, for non-caregivers or those who are unfamiliar and inexperienced with these diseases who may be reading this, please don’t assume because you’ve seen or read The Notebook that you’re an expert on the subject and please don’t offer medical diagnoses and advice.

The best gift you can give is to just listen and offer non-medical support. Most caregivers get so deep into the details and all the aspects of these diseases because they need to be able to take care of their loved ones in so many ways that if there were such a thing as a non-M.D. expert on them, most caregivers would qualify.

This post will discuss vascular (multi-infarct) dementia. The cause of this dementia is small vessel ischemia in the brain, which presents itself as chronic transient ischemic attacks (TIA’s). TIA’s are sometimes also referred to as mini-strokes.

TIA’s can occur when the small vessels in the brain get temporarily blocked, cutting off the blood supply and oxygen to that part of the brain. The cumulative affect of these is what causes the damage that is present in vascular dementia. Multi-infarct dementia just means that there are many areas in the brain where this vascular damage has occurred and accrued.

Although high blood pressure is a culprit, high levels of stress and a history of migraines are also players in these kind of TIA’s.

In my mom’s case, all three were factors, but high levels of stress were what brought on the majority of her TIA’s. I suspect she started having these as a small child, because there were times that she just couldn’t remember what happened in a specific instance but she’d referred to it as “blacking out.”

She never lost consciousness with them that I witnessed, but she used the same expression to describes times when we kids were all babies and she was under a lot of stress and she couldn’t remember certain instances of things.

Her TIA’s were common as we grew up, and although we never got over the shock of the suddenness of symptoms and the helplessness we had to do anything about it, we all got pretty good at taking care of her when she had one, and that lasted for Daddy until his death, and for me into adulthood until Mama’s death.

Her TIA’s always presented the same way. They were sudden. Her face would lose all color and her lips would get very pursed as she seemed to salivate more. There was a sort of paralysis except for her right hand. She would start rubbing her thumb across the first two fingers and that would last until the episode was over. I suspect there was a sense of unreality associated with the TIA, so the feeling of her fingers rubbing together was the only reality for her in those episodes.

I’d always hold Mama’s left hand and kind of stroke it so she knew I was there and she wasn’t alone. When the TIA was over, she’d immediately try to talk and everything came out totally garbled. That would last about thirty minutes and then she’d be okay.

And she never remembered them happening. I remember the first time I was giving her medical history as her POA at an ER (and this was way before the dementias and Alzheimer’s Disease) and I named TIA’s as part of her medical history and she disagreed with me and said she didn’t remember ever having those. I laughed at the time and told her that not remembering them was part of the symptom of having them.

small-vessel-ischemia-brain-mriOver time, though, as small vessel ischemia recurs, eventually clusters of damage occur in the brain. This disrupts the normal neurological pathways of how information is learned and communicated. One of the most clear indicators of vascular dementia is difficulty in communication. One of these difficulties is misnaming things.

For example, the brain knows that a pencil is a pencil. Someone suffering from vascular dementia knows a pencil is a pencil. But because of the damaged pathways, there is often a break in the connection between knowledge and speech, so someone with vascular dementia is just as likely to call a pencil an apple.

Another clear indicator of vascular dementia is slower processing time. A brain with vascular dementia will fight to reroute stored information to speech. However, because of the extensive damage, it has to take a much more convoluted and lengthier route to do that conversion.

A third clear indicator of vascular dementia is that it occurs in sudden, steep steps of decline (brought on by recurrent TIA’s and new clustered areas of damage in the brain). These can occur in a very short period of time, as they did in my mom’s case.

In addition to these definitive indicators, vascular dementia also has features in common with other dementias, including difficulty learning anything new, cognitive impairment, problems with short-term memory, extreme emotional swings, and confusion.

There are no specific treatments for vascular dementia. Unlike any other organ in the body, once the brain has sustained damage, that damage is permanent.

However, there are medications that can address the symptoms of vascular dementia. The two most likely to help are cognitive enhancers: Excelon (although this comes in oral form, the 24-hour patch is best, if there’s no allergic reaction, to get the continual effect of medication that comes in a starting dose of 4.6 mg, a stabilizing dose of 9.5 mg, and a high dose at 13.3 mg)  and Namenda (given in 5 mg increments, two to three times a day).

When I discuss the medications in later posts, I will give some practical experience and advice on these two medications, especially with regard to Medicare, the “donut hole,” and working with your loved one’s psychiatrist to get the medication at either no charge or a reduced rate during the “donut hole” period. Both of these are patented, so there’s no cheaper generic version. And paying full price for them will break the bank.

In the next post, we’ll take a look at Lewy Body dementia: what is is, how it’s diagnosed, what it looks like, and effective treatments for the symptoms.

Going Gentle Into That Good Night Blog

After publishing Going Gentle Into That Good Night, I have given a lot of thought about how to best provide on-going and more detailed practical help and information about loving caregiving for our loved ones with dementias and Alzheimer’s Disease.

I intentionally wrote the book to be read quickly and to give immediate, big-picture information to caregivers.

However, there are a lot of details and little things that will come up along the way. There is a lot of information that can take hours of research to find and put together to evaluate a new or sudden situation or a change in behavior, actions, etc. There are many practical matters and considerations that take time and energy that you won’t necessarily have that need to be addressed.

Based on some of the messages I’ve gotten so far, there’s a real need for a blog like this. And it gives me a chance to continue in my parents’ footsteps of paying forward. In every thing that I have done since Mama died, that’s been the intent behind it. To step into the shoes of my parents’ legacy and leave the world a better place than I found it. Just like they did.

So, my intention with this blog is to give you as much information in one place as I can to help you do what’s most important: loving and practical caregiving.

So follow the blog and we’ll walk through the journeys together. Please comment or if there’s something you’d like to discuss privately, you can email me at goinggentleintothatgoodnight@gmail.com.

And, for those who are inclined, I’ve included a Donate button on this blog. It’s optional, but anything given will be used to continue to educate and help in every way that I am able anybody and everybody who is caregiving (not just dementias and Alzheimer’s, although that will be a strong focus of this blog) for elderly loved ones.

Thanks and welcome aboard!