People are abandoning me. I’m a freakin’ lone ranger.

So here’s the crappy truth: dementia makes people uncomfortable. Perhaps they feel badly talking to someone who either cannot understand them, cannot communicate back as expected, or cannot maintain a conversation because they keep forgetting what was said. Perhaps they are worried they will get it themselves and don’t want to think about it. Perhaps they just cannot stomach seeing someone they love change in such a dramatic way.

Whatever the reason, this discomfort will cause people to walk out of your life. The funny thing is that there will be people who will stick around whom you never expected. My dad has a friend who, for a long time, came by once a month to take him for a haircut and a donut. They weren’t best friends, and I actually do not know him well, but he is one who has been loyal and supportive like no other.

When people stop spending time with you or make up excuses, please, please, please do not take this personally.

This is about them; this is not about you. Here are three ways to start coping:

  • Embrace those who are there for you
  • Join a support group
  • Talk to your people

find the best support for youEmbrace those who do come around, don’t stew over those who do not.

Embrace the people who do come around, and empower them to help you if and when they ask. Have a list of things you could use help with ready to go when someone says, “what can I do?”

Share with them what they can expect when they come visit and how they can best provide love to your loved one. Share with them what he or she is capable of doing (maybe going for a walk or sitting out in the garden) and make sure they know what to avoid doing.

Let them know how much it means to you to have them there so that they continue to be there for you. If these individuals know how powerful their time with you is they are more likely to make it a priority.

Join a Support Group.

Regardless of the people who stay in your life, I strongly recommend joining a support group (usually sponsored by the Alzheimer’s Association or another group at a local hospital or research center – the one in Phoenix that I love is with Banner Alzheimer’s Institute). Most are in-person, but there are some online that can be helpful, too. There are also groups on facebook and reddit that you may find useful.

Phoenix-area Support Groups 

Under 40 Online Group – through Hilarity for Charity

Facebook Support Group 

Reddit for dementia

No one will ever understand what you are going through like those who are going through it as well (or have been through it in the past). Take advantage of this. You are going to have a ton of questions, and these people are a wealth of knowledge. Almost everything effective that my mom learned, she learned from her support group (such as carrying cards with her that say “please be patient with us, my companion has Alzheimer’s disease” to hand to various service workers like restaurant servers or airport personnel).

Beyond that, the caregiver support group circle is a place you can laugh at your situation and not feel like a jerk. I think laughing as much as possible is so powerful. When someone you love loses brain cells and as a result, cognitive function, it can feel like a cruel joke. You regain power by saying…you can take some memory and some function, but you cannot take my joy or my sense of humor.

Talk to your people.

Finally, talk to your close friends and family…and be open and honest. Let them know how shitty it is and allow them to listen and be there for you. It takes courage to share when you feel scared, sad, or overwhelmed. Remind yourself that you deserve support – no superhero operates alone. Set up a system that allows you to reach out on your terms but that also ensures you get the support you need.

If you have a little trouble with this, perhaps share this post or other aspects of my blog with your friends and family so they can start to explore and understand.

Be strong, superheroes!

Raw links if above do not work for you:

Facebook: https://www.facebook.com/groups/243952378956864/

Phoenix area: https://www.alz.org/care/alzheimers-dementia-support-groups.asp

Under 40 online: http://www.hilarityforcharity.org/#!get-involved/c1eju

Reddit: https://www.reddit.com/r/dementia/

BrightFocus – Toolkit for Alzheimer’s

The good news in all of this dementia mess? More and more individuals and organizations are working toward preventative treatments, cures, tools, and support to help individuals with dementia (with much focus on Alzheimer’s disease) and those who care for them.

This week, a colleague of mine turned me on to BrightFocus Foundation, an organization that has created a toolkit for those diagnosed with Alzheimer’s disease (as well as Macular Degeneration and Glaucoma). They are also working to create a community around the disease.

Just have 15 minutes to poke around? I would explore the toolkit (above) and the fact sheets that may help you understand the diagnosis further. Bookmark this site and use it when you have time to explore or have questions.

find the tools you need

Dementia: The Brain

In my last post I talked about the difficulties in diagnosing dementia. One thing that adds a significant challenge is how difficult it is to really be able to see and test what is happening in the brain – it’s not safe to be poking, prodding, or cutting into that thing!

So what’s happening in a brain with dementia? There is a lot we know, but still a ton we don’t yet know about dementia.

Here’s what we know:

  • Pathology (physical signs) of dementia can start in the brain as far as 20 years prior to symptoms of dementia like significant memory loss (Specifically with Alzheimer’s disease).
  • The brain starts to lose the flow of information through key parts of the brain called neurons and synapses because neurons die and/or synapses are destroyed. This means that a path of information that may have helped us remember or make sense of something is no longer there.

So what’s in a brain? Well we have a large sheet of tissue that is crumpled up inside our skulls, and this is called the cerebral cortex. The cerebral cortex understands what is happening in the rest of the nervous system and it is divided in 4 lobes: frontal, temporal, occipital, and parietal. The most human part about us is our ability to understand a situation, its nuances, and know how to behave, and this happens in our frontal and temporal lobes.

We also have a wishbone-shaped section of the brain called the hippocampus. The hippocampus is where we store our short-term memory in a given day. When you meet someone new named Jennifer at a breakfast meeting, her name is stored here so that when you see her later that day at the final presentation, you can say “Hi Jennifer.”

At night, when we sleep, our cerebral cortex turns off and rests and the hippocampus transfers all of the events from that day into the cerebral cortex to be stored as memories. This is when short-term memory becomes long-term memory (and why sleep is so freakin’ important).

When our loved ones have dementia, the cerebral cortex and hippocampus are severely affected – starting with the hippocampus in the early stages (and even before we really see symptoms). As you can imagine, when the hippocampus doesn’t work, the “thread of the day” as the University of Tasmania faculty put it, doesn’t exist. This is why our loved ones get confused with daily activities and new things.

What is actually happening to these parts of the brain?

The brain cells are dying; and when a brain cell dies, its connections to other brain cells no longer function either. You’ll hear references to “synapses,” the connections between one cell and another that help the brain transfer information. We need these! Without them, we lose the ability to observe, understand, and act normally in our environments, as well as a host of other things we see as symptoms of dementia.

This is one very elementary reason why curing dementia is such a challenge – dead brain cells cannot (currently) be brought back to life. Once they’re gone, they’re gone.

You will also hear reference to the existence of proteins and tangles in the brain that cause these dead cells. This gets complicated fast, so we will leave that for a future post!

Go get some sleep!

What is dementia and why is it so hard to diagnose?

In my “What the hell is going on” posts 1 and 2, I started discussing what dementia is, what it is not, and how to move forward with a diagnosis. Now I want to start sharing a little more. This can get confusing, but stick with me.

I, like many of you, just wanted answers when my dad was diagnosed. And sadly, like most of the country, I really didn’t pay much attention to the details of dementia because it wasn’t in my life.

My dad’s diagnosis changed from doctor to doctor (Alzheimer’s, not Alzheimer’s, stroke-caused, no stroke, and on and on) and I felt lost in the research I was doing. I am a facts person: tell me what I need to know and I will deal.

But dear lord, don’t leave me out in the dark.

Even just the communication between my mom and I kept me believing for years that my dad had young-onset Alzheimer’s disease (a form of dementia) when really my mom had only confirmed young-onset dementia (no confirmed cause). I’m still begging for more information!

I realized I didn’t really know what the hell dementia is, nor did I understand what happens in the brain with dementia. As a result, I decided to enroll in a MOOC (massive open online course) called Understanding Dementia offered for free by the University of Tasmania and to attend an educational symposium put on by local Alzheimer’s Association chapters (I attended the one in Denver, find one near your city through the link above).

This was so incredibly helpful and led to further research on my behalf. There is a lot to learn, so I am going to break it up over multiple posts.

The basics I’m going to share in this three-part post to start understanding are:

  • Dementia and Causes (like Alzheimer’s Disease)
  • Mild Cognitive Impairment
  • The Brain
  • Science and genes and stuff

First and foremost, dementia is not just a part of getting older. I know, I’ve said this before. This is important because we shouldn’t treat it like an inevitable hip replacement or eyeglasses. We should aim to take action in prevention and planning.

Dementia is a combination of symptoms (such as significant memory loss, disorientation, lack of reasoning) caused by other things, like brain diseases, conditions, and traumatic events.

Dementia is the “umbrella” category of the brain disorder; Alzheimer’s disease, Lewy Body dementia, and Huntington’s disease for example, are one of many causes of dementia. Think of it like this: dementia is like the category of “automobiles” and Alzheimer’s is a specific part of that category, like a purple truck. There are many types of automobiles, like a white car or a blue van, but they are all automobiles. In the same concept, just because you have an automobile does not mean you have a purple truck. So, if you have Alzheimer’s disease, you have dementia, but if you have dementia, this does not mean you have Alzheimer’s disease.

Why does this matter? In some instances, it really doesn’t. But in many cases there are certain treatments that should be considered and certain symptom management approaches that may be different depending on the cause of the dementia.

And guess what? You cannot get dementia by talking about it or by talking to and spending time with someone with dementia. It is not contagious!

Most often, dementia is progressive dementia, which gets worse over time. It is a devastating, progressive disorder that can be caused by many things (an accident, depression, or a brain diseases like Alzheimer’s) and can materialize in different ways at different rates for millions of people.

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Diagnosis of dementia is challenging to say the least. There are many reasons for this, including:

  • It is difficult to diagnose, and a 100% certain diagnosis can only be confirmed upon autopsy (or gathering and testing of tissue). If you like reading research abstracts, you can read more here from NIH.
  • Doctors, like the rest of us, don’t like talking about it and will avoid early conversations because there’s no true medical treatment and no cure for dementia (there are a few drugs that can help with symptoms, but this is still one of the great challenges). Read more about it in this NPR story. 
  • Patients don’t want to know – and for the same reasons. Most people think, if I cannot treat or cure it, don’t tell me. When in reality there is a lot you can do to plan and prepare if you have an early diagnosis.

Prior to a dementia diagnosis, one may be told they have MCI: Mild Cognitive Impairment. MCI does not mean you will develop dementia, but it can be a sign. Learn more from the Mayo Clinics here.

Regardless, if you have signs of MCI, taking action to build new pathways, or synapses, in the brain would be a good idea. Things like learning a new language or learning something else new and novel can do this for your brain. It’s just like going to the gym…you may not love it, but your body needs it.

So now we know what dementia is, what causes it, and why diagnosis is challenging. Next time I will get into what is happening in the brain.

Take a deep breath and find joy and gratitude in your day!

What the hell is going on? (Part 2)

If you haven’t yet read Part One of “What the hell is going on,” see that prior post to learn more about what dementia means.

So you suspect a loved one may have dementia. Here are the three things I would do first.

The most important thing right now is to get your loved-one with dementia (LOWD) to have the important conversations that need to occur, specifically about their care plan and wishes and preferences they may have. This is easier for some than others. You may want to watch the movie, Still Alice, to get a little understanding of what this may be like. These early conversations are important because they give the LOWD the dignity and respect of being a part of major life and care decisions while they still can.

There are many resources that can be helpful for you at this early stage. Here are two examples that we have here in Arizona.

EPIC – Early-stage Partners in Care – (http://www.alz.org/dsw/in_my_community_22265.asp)

CarePRO – Alzheimer’s Association + ASU + others (http://www.alz.org/dsw/in_my_community_19976.asp)

One of the smartest things you can do is encourage a trip to the doctor and get an early diagnosis (or understand what may be going on if it is not dementia). While there is no cure for the diseases leading to dementia, early diagnosis is vital in stacking the cards in your favor for the best possible scenario in care and medical management. It also helps you have the conversations and take the actions mentioned above.

Finally: take a deep breath, and have a come-to-reality moment with yourself and anyone close to the LOWD. Your loved-one is going to say things that don’t make sense, accuse people of doing things they have not done (stealing, trying to trick them…which gets difficult because strangers may actually try to take advantage at some point), argue with you about things that seem ridiculous, perform activities that seem odd, experience hallucinations, and a whole host of other strange things.

Click here for a list of common symptoms.

You MUST remember: this person’s brain is no longer functioning normally. The cells in the brain that allow for “normal” function are dead or dying. Their whole picture is becoming spotty and this can be very confusing or scary. But on the inside, this is still your loved one. They simply need a different kind of care and understanding now.

You must now think of this every single time you speak with them. When they say something to you that makes you want to argue back, be defensive, or react in a less-than-kind way, stop yourself. Do not take this personally – they are not trying to hurt you…they are scared.

There is a powerful book that I wish I had years earlier than I did. I recommend anyone with a LOWD read:

A Dignified Life: The Best Friend’s Guide to Alzheimer’s CareBy Virginia Bell and David Troxell

There are many ways to handle difficult conversations and encounters with this person…and this can be the most empowering thing to learn and exercise early. You’ll be looking at and talking to the father, mother, wife, husband that you know so well, and they will say something to you that is way off base, potentially rude or offensive. Do not react to the father, mother, wife, husband that you know…react to the person whose brain is being taken from them and who needs gentle, loving kindness.

And then…?

This is a process and it will take a lot of strength and courage. You’re starting to do the right thing by learning more. Just keep that up, do what you can, and don’t be so hard on yourself. One breath at a time. Your wellness is just as important as your LOWD. I will have MANY more posts on that.

Peace.

What the hell is going on?

So someone close to you in your life is starting to act strangely (forgetting events or conversations, not recognizing your sarcasm like she used to, acting confused in moments she shouldn’t be, imagining things, acting defensive, and many more lovely things); you are wondering if it is dementia.

First of all – what the hell is dementia?

Dementia is not a normal part of aging; it is a progressive condition caused by many diseases, the most well-known and largest cause being Alzheimer’s disease (but there are many different kinds). It leads to an individual, typically 65 or older (but in some cases as early as 40) losing his or her brain function in a way that is atypical to the natural aging process. It leads to impairment in five areas:

  • cognitive
  • functional
  • physical
  • psychiatric, and
  • behavioral

Each may be seen at different times in different ways for each individual. We often notice it first related to short-term memory loss and confusion.

This video is an excellent example of what to look for if you are not sure if it makes sense to be suspicious.

When someone has dementia, the hippocampus (a fancy little wish-boney shaped thing in the brain responsible for making memories each day) starts losing brain cells. They simply die. Ok – not simple…it is a little more complex, but for right now…they just die. In a properly-functioning brain, the hippocampus makes memories as you live your life, and then at night, when you sleep (why good sleep is so important!), the hippo transfers those short term memories to another home in the cerebral cortex and those memories are stored. That’s where long-term memories live.

When the hippo cannot do its job, memories do not get stored. Thus, a person with dementia loses the actual memory of something that has recently happened…it is not there, so it cannot be recalled.

Let me be clear with you – nothing about this situation you are currently trying to decode or anything that is going to come in the future related to this is going to be simple or easy to understand. If you feel confused, overwhelmed, sad, or panicked… that’s about right.

Now, that doesn’t mean there can’t be positivity, love, laughter, and peace…but don’t worry if right now you feel like that would be impossible. You’ll get there.

I think (based on my hindsight) there are three major things to focus on at this point:

  • Get the loved-one to have important conversations
  • Get to a doctor to get an early diagnosis (and get a 2nd and 3rd opinion)
  • Start the process of resetting your mindset about this person

These are my recommendations and I will elaborate on them more in part 2 of this post.

Deep breath. You can do this – and you’re not alone.