Last week I had a unique speaking engagement. Sure, it was the normal stuff I talk about…but the setting was different. I spoke in the town where I spent the majority of my formative years. It was a great opportunity to show them that I’ve finally ditched that middle school mullet for good.
Two of my former teachers were in attendance. I had a strange fear they’d go home thinking that they had wasted nine months teaching someone who never dropped the habit of saying “um” after each sentence and who got off on so many tangents that her Powerpoint seemed irrelevant.
However, after the presentation it was an old friend of my mother’s that asked a question for which I had no good answer.
She had heard the woman who introduced me mention my blog, and she asked, “So what exactly is the purpose of this blog thing?”
The purpose of this blog thing…
I have no idea.
There was not a lot of foresight when I started this blog. I mean, I’m lucky if I get my laundry put away within a week of getting it out of the dryer. I never get gas in my car until the display tells me I have fewer than 10 miles left. (I’m not joking or even exaggerating on that. It’s often down to 2-3 miles.) To tell you I had laid out the purpose, vision, or target audience of this blog when I started out would be a lie of epic proportions.
At times, I’ve thought my target audience was caregivers. However, I also sometimes write for the general public–hoping to increase awareness of Alzheimer’s and related dementias. (Caregivers are usually already pretty aware of dementia…)
And sometimes I hope my posts are an encouragement to people living with dementia. I want them to know I see them, and I see the challenges they work so hard to overcome every single day.
If your neighbor has dementia, I want you to read my blog so you understand why they do the things they do. No, they aren’t weird. And they’re not trying to annoy you. They have dementia. I want you to say, “I have a better idea of what they are going through. I’m gonna be a little more understanding and a little less judgmental.”
If you are a caregiver, I hope that you’ve read my blog and gained more of an understanding of what your loved one with dementia is experiencing. Sure, you’re a team. But you really are on two unique journeys. Having dementia and caring for someone living with dementia are both challenging, but the challenges are not the same. You don’t entirely get them. And, to be fair, they don’t understand what it’s like to be the caregiver.
If you’ve never met anyone with dementia….first of all, maybe you’re just not paying attention. People with dementia are living life–hanging out at restaurants, stores, movies, and yoga classes. They do not walk around with big “D’s” on their foreheads to designate their status. You may notice small things…maybe they take a little longer to get their cash sorted to pay the tab. Perhaps they get turned around in the store and struggle to locate the front door. And at those times, a smile rather than a look of judgment and annoyance can make a big difference.
I was once at a big conference in Washington, DC. I ended up at what I call a “mingly” event and did my best to make my awkward self be social. I was sitting at a table with some bright young academics, all of whom were just finishing up their PhDs, who had enjoyed a few beers each.
They were talking about career goals.
The first guy said something like, “Well, obviously, I want to be on the team that finds the cure for Alzheimer’s.”
The second guy said something like, “I’ll be thrilled if this drug we are testing is shown to slow the progress of the disease.”
I felt really small. I just kept sipping my wine and acting impressed (which I was) at the ambition of these bright young people. I hoped they wouldn’t ask me too many questions about my work in the field.
I know they say you can do whatever you want in life if you set your mind to it. But I disagree. There are lots of things I will never do–even if I work my butt off. I will never be an Olympic figure skater. I will never sing be invited to sing the national anthem at a major sporting event (although I’m not sure I could do worse than Fergie). I will never run a mile in under 5 minutes. And I will never find a cure for Alzheimer’s–or any other dementias for that matter.
I might as well have been sitting at a table of Nobel Prize winners.
There’s nothing wrong with not being the person who has the skills to cure diseases and development new drug treatments. But there are times we question whether what we do matters when we compare it to the impactful work of others. They are times we ask ourselves whether we really make a difference. And we have to search for the meaning in what we do. This was one of those times for me.
For a long time, I have felt that this field is focused on finding a cure or prevention method–which is a valid and important goal–but has not been focused enough on improving life for those who currently have a condition that causes dementia. When we talk about people who live with dementia in 2018, we often do it to point out how many there are, how expensive their care is, and how we hope that these individuals with diseases that cause dementias do not exist in the future. We want to end dementia. But what about those who get up everyday and negotiate the challenges dementia presents?
So back to the purpose of this blog thing….
It’s about understanding.
Most people you encounter are having a harder time than you think they are.
When we understand people and the challenges they must negotiate, we tend to be just a little bit kinder.
So that’s it. I want you to understand a little more so you’re less likely to lose your cool and more likely to offer a smile.
To my readers that live with dementia, understand that it’s not easy for your family and caregiving team. I’m not saying it’s harder on them than you. In fact, I hate it when people say dementia is really harder on the family. But know that it’s tough for them. And when you’re about to snap, do your best to take a deep breath.
If you have a family, friend, or neighbor with dementia, I want you understand a little more about what it’s like to have dementia. You’ll never fully get it (unless you have dementia someday, and I hope you don’t) and that’s okay. But the more you know, the more likely you’ll be to shrug something off rather than get frustrated. And that person with dementia isn’t giving you a hard time. They are having a hard time. Please understand that.
If you are someone who reads my blog even though you have no personal connection to dementia (and I’m sure this is a total of about 5 people–maybe some ex-boyfriends from grad school who are snooping to figure out what I’m up to nowadays), understand that most people with dementia live at home, in the community, like the rest of us, for the majority of the years after their diagnosis.
You might not know who has dementia, but when you see someone struggling for any reason, understand that a kind smile goes a long way. Swallow your judgement and realize you probably aren’t really in that big of a hurry anyway. (I hope I’m not coming off as preachy…I admit that I am not as patient and understanding as I could be at times. We are all works in progress, right?)
So the purpose of my blog:
I want to help people understand each other because with understanding comes kindness.
And this world could use a little bit more kindness.
10 thoughts on “The Purpose of Welcome to Dementialand”
yes yes yes! Let´s make it a better world for families with dementia today…now. Thank you Elaine! That´s why I am doing my PhD research on dementia services.
I just wanted to let you know that the purpose of your blog really resonates with me â it reminded me of the (attached) speech I recently made before a performance of the musical âThe Color Purpleâ (which Iâd booked to raise funds for Alzheimerâs South Africa). Given the difference between our 2 countries, you might find my speech interesting.
To my enormous relief (as itâs the first time Iâve organized something like this), the event was a huge success, with guests wearing some purple in support of Go Purple Dementia Awareness, informative speeches, and everyone enjoying a truly world-class, standing-ovation performance of âThe Color Purpleâ. We raised just over R78,000 (a respectable amount in South African terms, but which due to the exchange rate translates to only $6,600!) Hopefully, I will fix my blog soon (https://www.dinasdementiadiscoveries.com) and post pics there.
PS: I also almost run out of âgasâ (known as petrol here) before filling up, and am generally totally disorganisedâ¦.!
Once again, Elaine, your post today sang to me, not just a solo, but a whole chorus. I needed to read this right now while I struggle through a recent crisis with my husband, then a sudden upturn, and my own doubt about trying respite care for a while. You always have the answers I need when I need them. I started my ‘Dementia isn’t funny’ blog to follow my passion, writing, but also to help others if I could. It has turned out to be my salvation, and I believe I’ve helped others in the process.. I’ve recommended your blog to others who need you as much as I do.Thanks!
I am sorry to hear of your crisis and happy to hear of your sudden upturn. My blog, in many ways, is my salvation as well. THANK YOU!
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Elaine, you captured the purpose of your blog perfectly. That’s how I’ve always seen it. I love your blog and recommend it to people. Thank you for giving this gift of understanding.
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I should have asked you about the purpose of my blog long ago….I just figured it out! 🙂
I love reading your blog – it is a good reminder that there are lots folk out there living with dementia and just trying to understand a tiny part of what they are going through has helped me interact with my Mum. I write my blog to help me come to terms with my Mum’s condition and to record the good times as well as the bad. Hopefully by sharing it with a few people who are going through the same thing it can help others all be it in a very small way remember that it is not all gloom and doom!
I really look forward to your blogs. My Mother has vascular dementia, and I’m constantly trying to read more, and am hungry for information on coping with this condition.
I am a one of her caregivers, and understand, that it does, “ take a village,” and lots of patience , and support to care for those whose brains are betraying them.
I started blogging a few years back, and like you, was not sure what the purpose was… except to perhaps, save myself. I had been caregiving/loving/trying to cope with my 17 year old special needs daughter who had intense , and total needs.
I think that I was finally ready to throw myself a lifeline, and the amount of love, and support that I received back from sharing my journey was truly inspiring and incredible.
Thank you for sharing your insights.. I gobble them up like “ fresh Manna from heaven.”
My blog is entitled jillybrandon.co
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Excellent post. Thank you for sharing and helping us all understand the perspectives, for the persons diagnosed and for those that care for them.
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