Posting as a dementia patient

Good morning,

What I'm about to write is probably no surprise to anyone walking this dark path and still posting on boards such as this. I would, however, like those who walk beside us to know what it takes for those of us with a scrambled mind, at least this scrambled mind, to complete a reasoned, sensible post.

I know I can tend toward the wordy side but I've tamed a great deal, just ask my daughter in law. Often these posts, which seem wordy but aren't really that long, have taken me the better part of a day to complete. That's quite a change for me. Not that long ago, 15 minutes would have killed my longest, most complex post. Even this post is taking the better part of the morning. Why so long now? Often I will have spent a period of time writing what I thought was a well reasoned, properly structured response to or opinion about something only to realize what I have actually put on the screen is unintelligible. It will look as though I've just sat there holding down one key then holding down another for line after line. This will shock my consciousness. To my mind and body, I just completed a comprehensive, coherent statement only to reread it and find a jumbled mess. Now I must erase the entire thing and try to recreate it. I often can't remember why I went to the bathroom so putting a complex idea back together is often next to impossible.

As an example, I was responding to a question in an email with a friend a couple of nights ago when I started to hit "send". I though maybe I should review for any grammatical errors, omissions, etc... I had spent 10-15 minutes crafting this response. Again, it was what I thought to be a complete, intelligent response. The following couple of lines are an example of what I found:

dddddddfgh jjnkygkjn. Kgkhv.mhgk. Little kjygutd jhrclkgjtfkjgvjkf jar djhc kjyfjgrd khgckrs htdkhtfged khgfkhtfkhgfjhrdjhtfkfkhgftfffffffffffoutf had kuyfkutfg ktkhtfflflfyuuyyjlygfjkyfkgj

If you can make sense out of that you're a better person than I. Rather than spend the rest of the evening trying to recreate my response, I just stopped for the evening. This is the frustration we often face. However, and perhaps sadly for you, this is not going to stop me from subjecting you to my ramblings. It may take me a day or two to get them out in some form that makes at least a little sense but I think it's worth it. There is so little written from the patient's perspective that I hope this will be valuable information to someone and make both their life and that of the person they care for just a little bit easier.

Take care,

Randy

7 Replies

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  • I appreciate your "ramblings" as a person also with slightly scrambled mind as it helps me navigate my own experience. Your posts are very important not only for others, Randy, but for you to be able to articulate and share what is going on within yourself.

    I have also started to journal my own experiences inspired by your example for my adult children and friends.

  • Randy -- Your post reminds me to express my gratitude that at 86, I've lived 6 years past the age at which my mother died six years after being diagnosed with Alzheimer's and my father died of a heart attack. You express yourself clearly and benefitting yourself by remaining in contact with people.

  • Well said Randy...I understand it COMPLETELY. I've said something quite similar to this in my blog, I've even had comments that they "could see no evidence of dementia" which makes me wonder what do they think dementia is... or isn't for that matter. It take me an inordinate amount of time (like you) to express my thoughts and feelings and then try to thread them altogether in a way that everyone understands what it is I'm trying to convey. I'm eternally grateful to who ever it was that created spell and grammar check lol. Rarely, do I ever read what it was that I've posted. I write the first thing that comes to mind so that people get the real picture of what's going on in my mind... not some sanitized version of events, and then move on. But, on that rare occasion that do read what I've posted, I soon realize that spell and grammar check are not always perfect either lol. I hope that you have some good weather so that you get back to your fence.

    Tim

  • Isn't it funny how it's come to the point where the written word is our last effective way of cooperation. I can clearly, almost, see in my mind what I want to say but so often can not get that through my lips in any coherent manner. I've become so ineffective at conveying my meaning, my feelings, that it's become so frustrating for both me and my listener that I've all but given up. Now, I take the time to sit down and express my thoughts and feelings in type. It is still much more effective to this point.

    Lately though, I have had to read each and everything I write, sanitize it as you say. Otherwise I tend to get a whole lot of unintelligible gargbage like the example in my original post. And it always surprises me because I'm certain that Hemingway is streaming through my fingers as I type the original text. Little did I know it was actually a woodpecker randomly catching ants on the keyboard typing for me. Therefore, I often take hours to compose a single post.

    We've had some sporadic rain so the fence has kinda been on the back burner for a few days. What are the plans for the pond?

    Randy

  • Hi Randy,

    It's just an ornamental pond that I put in the backyard for my youngest son, who is autistic. I'm done cleaning and have refilled it. In years past I've had some goldfish in it for his enjoyment. I've stopped stocking it, thanks to the blue herons, racoons and garter snakes who saw them as an easy buffet dinner. I forgot to ask you... go figure lol if I could copy and paste your post to my blog. It will save me a great deal of time to articulate once again just how difficult it is convey coherent thought into the written word.

    Tim

  • Tim,

    Funny, that was my brother's name. Yes, feel free to use anything I write that you feel may be useful to someone else. That's the main reason I post, other than as a resource for my family, to help others understand our daily walk with this monster. It is so poorly understood, even by our closest caregivers. I know I didn't truly understand what either my mother or father were struggling through.

    Randy

  • Thank you Randy, for explaining how difficult communication is on your part. I have reached the point with my husband where I can no longer understand what he is trying to get across. It's a guessing game to establish what is the apparent problem, then another half hour of cross-talk to try to get him to see there isn't actually a problem. It's exhausting for both of us, and the temptation is to stop talking!

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