I’d love to tell you that I am confident person who has thick skin and is able to blow off all of her blog critics…but that’d be a big fat lie.
I’ve learned that when you put yourself out there on the internet, you should brace yourself for the response. As Forrest Gump said–Life is like a box of chocolates….you never know what you’re gonna get.
I am grateful that on most days I feel that the world is a kind place and people are thankful for my work. Many of you who subscribe to this blog and wake up to read it every Monday are way too kind, way too forgiving, and way too amazing to me.
When I first started writing Welcome to Dementialand, I had few but enthusiastic supporters (my mom, my husband, my friends CJ and Dana). I wasn’t sure if my supporters would continue to be limited to those who were related to me and/or had a history of spending evenings consuming adult beverages with me. I have been humbled that complete strangers (well, former strangers) have somehow found me in this crazy technologically-based world and continue to encourage me to keep writing.
This post is not to complain about the feedback I get because 95% of it is more positive than I deserve.
However, I have received some messages over the past few years criticizing me for portraying dementia in such a negative light. People have said that I overemphasize that dementia is progressive and fatal. (In my defense, I think research and awareness of dementia has been hindered by society’s lack of knowledge that dementia is progressive and fatal.) If I were to sum up these comments over the past couple of years, I’d have to say that there are a lot of people out there who see me as a Negative Nancy.
Interestingly, another common criticism that I receive is that I’m way too Suzy Sunshine. Some people have told me that I downplay the destruction that dementia causes. They tell me that I work too hard to shed a positive light on the lives of those living with dementia…when their world is getting dimmer and dimmer.
Sometimes the comments from both camps are thought-provoking and insightful. Sometimes they are just mean. You might have noticed that you can no longer make anonymous comments at the end of my blog posts. I’ve decided that you’re welcome to say whatever you’d like to me, but you need to own it–just like I own what I say.
So either I’m Negative Nancy or Suzy Sunshine. Strangely, I feel comforted that I receive relatively equal criticisms in each category. I guess they cancel each other out, right? Maybe I’m Natalie Neutral?
I can’t promise that I present a balanced view of dementia in every blog post. Sometimes I’m happy; sometimes I’m sad. I admit that is likely reflected in how I perceive the situations I encounter and the posts I choose to write.
I would hope that if you read this blog weekly you understand that I see the challenges encountered by those living with dementia but also the quality of life enjoyed by many diagnosed with Alzheimer’s, frontotemporal dementia, Lewy-Body, and other types of dementia.
There is no master plan to convince the world to perceive dementia in a more negative or positive light. In fact, there’s no master plan at all. You’re giving me too much credit if you think I’m pushing a calculated agenda.
I’m just a human being who spends a lot of time thinking and teaching about dementia. I am privileged to meet many individuals touched by dementia, and these people are kind enough to share their stories with me. A few years ago, I decided to write about it.
As I look back on my posts over the past three-ish years (which I don’t do often because I notice typos that bug the heck out of me), I think I’ve done a decent job of representing the good, the bad, and the ugly. And I will argue that there are plenty of each in dementia.
When people are diagnosed with a disease that causes dementia, I’m not sure that the diagnosis is always made in a way that acknowledges both the potential of someone living with dementia and the challenges encountered not only by the individual but by their care partners.
A lovely friend with younger-onset dementia sent me an email a couple days ago that ended with “Life is still good!” followed by a smiley face. In the same email, she acknowledged there are some “strange” things going on in her brain and that she recognizes she sometimes has gaps in time.
She says she’s still herself, but needs to reboot frequently, and I know that sending me such a long email probably took a lot of mental energy. And her mental energy is precious; she should get to spend it as she wishes.
She is not overly negatively nor overly positive in her perspective. She seems to be saying “I’m still me, but I know I’m changing.” I am in awe of her in so many ways.
She’s living with dementia.
And maybe life is different than before dementia…but it’s still life.
Too often, people who are diagnosed with a type of dementia are told to get their affairs in order. I’m all about planning, but there’s still life to be lived. And how do we support people in living their best possible lives with dementia?
As with any disease that is fatal, there’s something between diagnosis and death–it’s called life.
Not every day is going to be a good day, but not every day was a good day before diagnosis either.
So that’s my official viewpoint on negativity vs. positivity in dementialand. Yes, dementia is progressive and fatal. You’re gonna have good days and bad days. But life after dementia is life. It’s the same but it’s different.
Call me a Negative Nancy. Call me a Suzy Sunshine.
Just don’t call me late for dinner.
(I’m here all week.)
When Dementia Knocks 
I find your posts informative and refreshing in tone. I appreciate that you can find the humor in certain behaviors or situations. Those with dementia can say the darndest things at times, and its OK to chuckle. We need to take advantage of levity whenever possible, because as you also depict, there are dark days full of frustration and sadness.
LikeLike
Thank you…and thank you for reading!
LikeLike
i think accurate portrayal will be both.
Grief process is absolutely needed in order to appreciate life with cognitive decline (with a dying brain) — over and over again with each drop in abilities. Grief becomes a huge portion of getting on with Life, and if you try to avoid it or just not pay it any time/attention, then you will pay the consequences.
Irritated by organizations or Folks that will only share the positive stories. Like so many other things in life, BALANCE is essential. Thanks 😀
LikeLike
And you are absolutely entitled to feel grief with each loss. Thank you for your thoughts!
LikeLiked by 1 person
Sorry you get such strong messages from each end of the spectrum. I found your blog and do appreciate knowing more about Alzheimer’s. Knowledge is power. Thank you!
LikeLike
I’ve been reading your blog through my emails for over a year and as someone employed by a residential home specialising in dementia care, I always find it interesting and insightful. I wouldn’t say you’re too negative or too positive. I’d say you’re realistic, in that you use real world examples of your experiences to help your readers to think creatively about living with dementia. Regardless, I think your blog is great and am happy that you continue to post despite negative comments from people who can’t see what you’re trying to achieve
LikeLike
I love reading your blog every Monday and find that you always provide food for thought. Witnessing a loved one move down the path of dementia can be frightening and overwhelming. To know that others understand is very helpful. Thank you.
LikeLike
I think you are absolutely right – dementia has room for negative Nancys and suzy sunshines and often the two live together quite happily. I love reading your blog not just because of the educational content but enjoy the ‘human’ approach which you bring to the table. I am lucky in that most of the time my Mum seems very happy in her own creative world but do realise that many people are not and that many of my own negative thoughts about her condition are not shared with her. Keep up the good work.
LikeLike
After my wife was diagnosed with Alzheimer’s, a wise man told me that she didn’t “have” Alzheimer’s; rather, she “was living” with Alzheimer’s. That opened me to the realization that our entire family was “living with” Alzheimer’s. She wasn’t in it alone, though it was her brain being affected. We all were in it together. What a difference this has made in handling the ups and downs of dementia.
This week she enters a memory-care unit. After 50 years of living in the same space, we’ll be living in two separate spaces. However, we’re still living! She’s a three-minute walk away from me. Alzheimer’s has changed our living arrangements, but not the fact that we’re still living.
Thank you for talking about living with dementia!! And thank you for talking honestly about the ups and downs of that life. You’re a gift from God to those of us on this trip! mngopher
On Mon, May 14, 2018 at 4:58 AM, Welcome to Dementialand wrote:
> Elaine M. Eshbaugh, PhD posted: “I’d love to tell you that I am confident > person who has thick skin and is able to blow off all of her blog > critics…but that’d be a big fat lie. I’ve learned that when you put > yourself out there on the internet, you should brace yourself for the > respons” >
LikeLike
When I opened your blog post this morning and read the first few sentences, I felt relief wash over me. Your topics often “hit the spot” at just the right time. I enjoy your posts so much that I recommend them to others. I wish we lived closer so that I could be a part of your classes, both as a fellow educator, and as a caregiver to my 52 year old husband with FTD (beginning year 6 of his diagnosis). I feel a connection to you no matter what you write about, and there are certain topics that have truly sustained me during the progression. One article in particular was about flying. I admired your honesty about not stepping forward to help a dementia patient on the trip home from an Alzheimer’s Conference. The lesson you learned and the courage it took to share, made my flying experience a bit more tolerable and I was able to anticipate issues that might arise. The fact is that some days in Dementialand stink and you have to fight the dark fatality cloud that comes with the diagnosis, but most days are just fine. You adapt. However, part of that adaptation comes from support systems such as yours. Keep writing. We look forward it every week. You are a Godsend.
LikeLike
I look so forward to your Monday posts.. it then is not a “ manic Monday,” but one that is honest, and gives me hope, and welcomed tools to work with. It makes me feel not quite so alone in the “ dementia” journey with my Mum. It has been heart breaking to see my Mum’s fear, and anger erupt towards me.. and I’m reading like a fiend in order to understand how best to support her in this phase of her life. Thank you for blogging, and education, and being candid, and funny, and relatable.. I appreciate your words.. so blog on.. Nancy, Natalie, or Joyful Julie…
LikeLike
Thank you! My mam was diagnosed with front temporal dementia 18 months ago. I also got the amazing 50/50 genetic diagnosis the same day. The support from the health profession since has been non existent and your blog is my only connection to a world of understanding what to make of it all.
I was fully shocked when I realised that dementia is fatal. Looking back I have no idea what I thought the alternative was!!! But nobody says it outload do they.
My mam is happy and living with her diagnosis in a lot of ways I never imagined…like her insight in to her situation. It’s awful and sad, but it’s her life for as long as she’s got it.
Thank you for being awesome and helping me understand the world of dementia and find the lighter side of our dark situation. Keep up the wonderful work you do..and ignore the typos, they make you human!
LikeLike