I’ve written this blog since January. This is my 73rd blog post, which blows my mind. I’ve received positive feedback…and I’ve gotten some negative feedback at times as well.
I’ve written a few posts that make me really proud. I’ve written some that I would say are just okay. There are a couple that I’m not sure are all that great, and I’m fine with that. All in all, I have to say that the joy for me in writing this blog has come from the connections that it has helped me make rather than the quality of the work.
I wouldn’t necessarily call myself a private person, but I’ve struggled at times to put my experiences and perspectives in writing, not knowing what type of response I might receive. I’ve written about a few regrets I have, and I regularly visit my many weaknesses and vulnerabilities. Sometimes I open up a bit and wonder if I shouldn’t have. In the end, I’m usually glad I did.
All of that pales in comparison to some of the blogs I read that are written by people with dementia. I am particularly impressed with the raw honesty of a blog by a woman in her 40’s with younger-onset Alzheimer’s disease named Melanie. It’s insightful, courageous, and amazingly real. Her work is far more more compelling than anything I’ve ever written or will ever write.
There is one particular post that I have read about 15 times. It has helped me understand dementia in a way that I did not understand it before. It also continues to break my heart.
A link to the post is included, and I have pasted the entire post below.
Thank you, Melanie. You are making a difference.
.. Remember Me ..
I knew it was coming, but the knowing didn’t make it any easier. New doctors 😦
After a horrible ordeal at my recent new neurologist’s appointment, I didn’t talk for quite awhile to my husband or daughter who took me to the appointment. I truly was just tired of it all.. the questions, tests, blood work, etc. On top of that, this highly recommended and well qualified neurologist was completely rude, interrupted each of us as we tried explaining me .. yep, feels like just yesterday, or should say 6 years of frustration with doctors with their questions, disbelief, egos bigger than the room their in, and then the overwhelming ending statement “well, there’s not anything more we can do” ..
yes I know I’m dying.. yes I know there’s no cure, no medicines for the disease, only endless pills for the symptoms and then more pills to counter those pills’ side effects … an unending cycle I want out of so bad. But can’t a doctor just give me a little bit of hope.
Finally after a bit, we took my daughter to dinner for her birthday and I was able to process everything and speak a little of how I felt. I looked at my husband and said “I just don’t want to talk to anyone anymore” .. I asked if he understood what I meant by that and he said “yes”. I thank God everyday for my husband and his “knowing” and comfort and peace he gives me. I don’t want to talk about what’s wrong with me over and over with more and more doctors or about all my medications and prognosis. I just want to be left alone.
So the medications I’ve been on since diagnosed, that again, do not do anything for the disease itself, only the symptoms of the disease… are no longer working. They were hoping they would at least help me focus a bit more, which it did for a few years, then they hoped the other med would slow down my progression.. after being tested 3x a year to follow my progression, the med has not helped .. not even a little.
In this disease, you either plateau – stay even for a bit or even longer or you just decline rapidly – all at once, or in the beginning and then later .. I’m back to that steady decline. My earlier hospitalization this year, really hurt me mentally. People think going into the hospital is a short ordeal, and then you go back home and you heal and get better. With this disease, it doesn’t always work that way for us. Sometimes we never recover from the mental and physical breakdowns. In my case, as I have fought back hard all these years from over a 100 admissions, this last one, I haven’t been able to get my footing back, my fight.
I have literally gone back to where I was the year I was diagnosed in every aspect. I look back now at the past few years and yes, I do appreciate the health, the strength and drive I was blessed to have, but now I’m truly scared. In the beginning after you battle the depression, anxiety, fear, hopelessness… you eventually come to terms with it and move on – fight back as much and as often as you can. The promise of meds to help, good doctors, progress – oh progress – I wish for that, but it’s not to be anymore.
My tests have shown a sudden fall in everything, too fast for me to even grab a hold of one aspect of it to try and stop it, or push through to make it at least bearable. My anger is back, frustration is growing, my words (though you may seem they are good as I write this) are not there when I go to talk or to express what I need or even when I need help. Their random, they don’t make sense most of the time and most conversations are filled with so much bitterness and anger.. I’m losing control and can’t seem to stop this spiraling. This isn’t me. I just want to be “me” again!! I truly hate this disease and what it does to all of us with it. I hate what it does to our caregivers, their pain, frustration and helplessness. The tears – never ending.
I want to apologize to anyone who reads this, if I’ve ever commented or posted anything to offend anyone or anger some. I truly don’t mean to. As I try and write what I feel, or truly try and comfort or encourage others – my words are just not coming out right anymore. From this point on, I may continue my blog, but I may have to face the fact of just shutting out my other social media outlets. My brain just can’t seem to grasp all the “clutter”, chaos, information… you may think those words are harsh, but to someone with this disease, that’s what it feels like to us. Too much stimulation, too much to try and comprehend and then try and process. What used to be so easy, is now so hard to just grasp other people’s words, appreciate their beautiful photos – because you’re trying to remember who they even are, to read a wonderful quote or prayer and not be able to process the meaning anymore.. this world sucks. I wish I had a different word for it, but I can’t think of any right now and may never again.
My reading and writing have also both deteriorated so bad. I thank God for my continued use of a keyboard, for “auto correct”, though it can’t correct any feelings that just aren’t coming across exactly the way I want them to. I wish there was an easier way to express how all this feels. To be able to help someone out there to understand, to be able to encourage others with this disease with problem solving ideas like I used to be able to do, or just give information to help ease some of the anxiety that caregivers feel. I’m lost. I’ve come so far to only recede back to where I was years ago.
This is what dementia looks like. We may all have different forms of it, classifications, stages and progression, but the symptoms are all the same, they just happen at different times and degrees.
Well, it’s after 4am and I have yet to sleep tonight. None of my meds help with my sleep anymore. Insomnia is now more common than a night of sleep. I have a fellow friend with the disease who also shares this same nightmare, of sleepless nights, unable to “shut off our brains”, though their not working quite the same, their still running “non-stop”.
As far as my new doctors, I understand their evaluations of me. I’m thankful that their no longer going to put me through rigorous testing anymore and constant hospital admission. I still have to do my progression testing every three months, but those have a new meaning to me: embarrassing. Questions I cannot remember the answers to; the year, the president or even things he wants me to remember and repeat later on, or the “where am I” or where do I live… frustrated, anger, embarrassed, helpless.
Those feelings are why I haven’t written in awhile. I don’t know what to say or how to say how I feel other than those words.
My husband and I have now settled where it’s warmer year-round for me, to help me, as I can’t take the cold anymore. We’ve prepared for the worse that is approaching much quicker than any of us would like. Last year, they gave me a projected date “maybe 2 years Mrs. Wagner” .. that’s what I remember them saying. I always brushed it off, as they truly don’t know, it could be 10 years. I can fight this, overcome it, keep praying, believing in a miracle.. I never gave in to a “final date”.. just kept on going.
The past month has changed all that. At first I noticed it, then my husband did. Little things just like 6 years ago, now much bigger things are happening. I’m blessed my husband can be with me every single day and night, so I’m not alone, and he’s there to help, to make sure nothing happens to me and I’m safe. But it’s getting harder as I reach for something and I drop it every time now; I open the refrigerator door and forget to close it; I start my morning routine (because I have to have a routine now due to this disease, anything out of sync will absolutely sink me, and that’s no exaggeration) and then I’ll miss a step – leave the water running in the sink, try and start a cup of coffee (and we have an easy Keurig for me to use) but forget how to even push the button or close the lid and I just stop and stare at it, hoping something would “click” and I can figure it out, but it doesn’t, so I just sit on the couch as usual and hope I can just process how to lay down, pull up a blanket or even answer my phone, which is becoming more and more difficult. Then the randomness pops up here and there: I can use my laptop once it’s been opened for me, “surf” through my emails, but can’t really understand most of what I read, so I leave them for my husband. Again, so thankful for him and all that he does for me, for us, our home, our family.
I’m not sure when I’ll be able to write again as these moments are fleeting now, of comprehension, awareness and focus.
It will be sad to leave my family and friends on facebook, etc, but I’ve gotten to that point in this disease where I don’t feel like I’m a benefit to anyone anymore, nor any good “news” on my end. I wish everyone much love and prayers and all of you will always be in my heart and mind, even if I’m losing touch with faces or names, I remember feelings, warmth, love and encouragement. I know I am supported more than I deserve and I am so grateful to each of you. Someone will keep anyone posted that would like to know or if ever close by, to visit, though I’ll apologize now if I’m not “quite there” anymore. My 45 years have been filled with all of you – great and true friends, warm and loving family – God has surely blessed me and I thank Him everyday for each gift He has given me. Till He is ready for me to come home, I’ll never give up, I just have to fight a little differently now.
The following song sums it up in a bittersweet way ❤
“Remember Me” lyrics below by Chris Mann – who wrote this song as an anthem for Alzheimer’s:
“I need someone to hold, to hold on for me ~ To what i can’t seem to hold on to ~ The life we used to live, is slipping through my fingertips ~ Like a thread that’s unraveling ~ I suppose that nothing lasts forever, and everything is lost in its time. ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ Remember me ~ I know there’ll come a day, when i have gone away ~ And the memory of me will fade ~ But darling think of me, and who I use to be ~ And I’ll be right there with you again ~ I hope I’m one thing worth not forgetting ~ Tell me that you’ll never let me go ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~
6 thoughts on “The 2041 Words That Helped Me Understand Dementialand”
Elaine, your blogs are always informative, but reading Melanie’s story and feeling the depths of her emotions as she experiences what dementia is taking from her brought me to tears.
I had the exact same reaction, Nancy.
Thank you, Melanie. You are a kind person, and your willingness to educate and share your story with the world is a generous gift.
Oh my goodness, Melanie speaks for me! I’m not that far along in the “progress,” but her words ring true. She writes in such a raw, direct way, just as I do. I can imagine myself writing something very similar in a few weeks, months, years. That has never really frightened me, but it does now, having read this blog. But that’s okay. I’m a realist and a futurist. I like to analyze what’s coming. I also share her same basic faith, although I feel I’ve lost a good bit of it to AD.
My heart goes out to Melanie. She is a courageous voice that people need to hear although few will want to. May I have the same courage and keyboard abilities long enough to continue this message. The world needs to hear this!
Thank you for sharing this, Elaine.
Thanks, Jim. The saddest part of your comment is about your loss of faith. I would certainly read anything you write and share it with my college students. Best wishes.
The world does need to hear this, Jim. Thank you for your willingness to keep Melanie’s story going. God bless you Jim and Melanie, with strength and courage.
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