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!

A Mindful New Year

Feeling overwhelmed is normal; but don’t let that keep you down. Getting to a place of control (even if it is just perceived) and feeling a sense of calm CAN happen for you if you work on it.

As we kick off a brand new day in a brand new year, take this time to evaluate how you feel.

What are you proud of in 2015 (getting that appointment with a great doctor, learning a new trick to get your LOWD into the shower, finding 20 minutes for yourself each day)?

What are you grateful for (those moments when your LOWD looks at you and shows love, your dogs, your kind neighbor who brings in your mail)?

What do you want to learn this year (how to balance medications correctly, how to fit in exercise)?

And what will you do for YOU?

Consider what is important to you in these next 365 days. You are a superhero taking care of someone who truly needs you, but you are also a person; you are also still YOU.

happy new year!

My challenge to you, as millions write down their New Year’s Resolutions, is simply to think of three things that would bring you joy this year. Big or small. Write them down. And then tell someone in your life. Tell that person who can help you reach that particular goal, and ask them to help you get there.

If you’re struggling to get started, get inspired by this great site from Lezza Gibbons, Leeza’s Care Connection. There are some basic tips to “breathe, believe, and receive,” that may get your mind in the right place.

That’s it. Do it for you. And then send me a note about what you wanted to do, how you did it, and how you feel when you do.

Let’s celebrate YOU.