My Life With Dementia
These days I wake in constant anxiety. Wondering what the day will bring and expecting the worst. My forgetfulness is getting progressively worse, however my hearing ability had doubled, quite painfully in ways which makes it very confusing to me. If I go out for a meal I am constantly bombarded by other peoples conversations which, at times, does not allow me to concentrate on the people how are with me.
I wonder if I will be able to manage my temper through the day. If things go wrong, could I keep a clear head without hitting the roof following a tiny mistake that someone or myself, have made and spoiling a nice day.
Will I remember the directions to a particular place I am trying to get to without panicking, appearing normal and getting confusing looks from passers by not unaware of my condition. I sometimes put on a pair of headphones and listen to my favourite music as low as I can, just enough to be able to hear it. This gives me the ability to hear all around me and also makes me concentrate on the music in the background and this clears my head.
I know that I am not the same person as I was a few years ago. I even get hallucinations where I see shapes and ghostly figures crossing my path as I walk. I stumble when I walk at times, especially over different surfaces, when it’s been raining and areas of the pathway are dark with rainwater, or crossing a road where the surface is different with cracks in the pavement.
I am always losing my trail of thought. I will start talking about a particular subject, I get stuck on a particular word, then all of a sudden I forget the subject I had been talking about. At times I say words I didn’t want to say. Also, I could be listening to someone talking and just get lost in what they are talking about. I struggle when the phone rings and the caller asks me an unexpected question, I feel so anxious that I am unable to carry on the conversation and, frustrated, I hand the phone to my wife. Sometimes if I need to call someone, I will try to plan what I want to say and half way through, I could loose the trail of thought and have to apologise and start at the beginning.
Mostly everything I do in a day is planned. I have a number of note books around the house and I jot things down to remind me of what I wanted to do throughout the day and refer to it sometimes hourly. The evenings I tend to stay in and watch TV and then retire to bed. I have a laminated tick sheet on my bedside table and refer to it approximately 3 times before I lie down, returning to the same door to make sure that I had locked it, wonder around the house a second time making sure that the lights are all out. Happy that all is will I end my day and hope the next will be less stressful, and also hope I don’t wake up in the middle of the night anxious that I have not forgotten to do something that I should have done or worry about something that is on the horizon.
However, this is all within a 16 hour day and although I struggle, I do know that I have family and friends that love and care for me. I have new interests now, photography, sketching and even singing are now a part of my life and I have now learned not to disregard anything and just give everything a try, although not all is suitable, I find that my life is still active. I also enjoy my memory cafe meetings, both virtual and actual and enjoy contributing to bring ideas for helping people with similar problems getting advice from other sufferers and sometimes have a bit of a laugh about it.
Photo by Andrew Garvey.
Rcvd via pdf in email 2015-09/26.
Andrew’s index for other pages is at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/andrew-garvey/
Explanatory page for Lewy Body Dementia is here >> https://www.lbda.org/learn_about_lbd
Explanatory page for Fronto-Temporal Dementia is here >> http://www.theaftd.org/life-with-ftd/newly-diagnosed
* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If there is an advertisement below, I have no control over what is shown. — copyright exclusively by Andrew Garvey on 2015-09/26.
Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year
Wanted to let you know that this article will be included in the dementia “Symptom Perspectives” monthly links tonight, October 30, 2015
I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.