One of the most frustrating things for people with dementia is trying to explain what dementia is. The truth is you can't. People with dementia constantly hear things from people that know them like, "I forget things all the time ". "I get lost as well". These common responses are unintentionally hurtful and cause people with dementia to want to isolate themselves.
When you have dementia you have to accept the fact that you cannot explain the unexplainable. You can only explain through example and even then must accept the fact that most people will not understand.
A couple of weeks ago I was in bed and wanted to change the channel of the TV. The remote was next to me and I looked at it and sort of knew that it controlled the TV but was not sure how to use it. I picked it up and looked at the buttons but had no idea what to push or how to use it. I got up and manually shut off the TV. I did not get upset because I'm used to these quirky things happening. The next morning I woke up, reached for the remote and turned on the TV without hesitation. Haven't had a problem with it since. A classic dementia moment.
Another example is my laptop. Not to long ago I wanted to go online but did not know which icon to push. I wasn't sure if the icon disappeared from my screen and called customer service. I explained my situation and they helped me find the icon which was right on the screen where it should be and never had moved. Another one time occurrence.
Approximately six months ago I was in front of my apartment building and got disoriented and did not know where I was. This happens and when it does I either sit down or just stand still till I realize where I am. This can last from minutes to hours. Fortunately the handyman from my building found me and took me home. The scariest thing was not even getting lost or disoriented. This happens and I'm used to it. My fear at the time was a family member who was starting to discuss putting me in a group home or institution. I had more anxiety over my family finding out about the incident than the actual incident. Many of us who suffer from dementia have similar legitimate fears therefore we start shying away from our loved ones and go into a self imposed isolation. I wear a medic alert bracelet from the Alzheimer's association but have always been to scared to use it. I still wear the bracelet but no longer even think about using it. I know that no matter what happens, sooner or later I will find my way home and I always do.
Welcome to the wonderful world of dementia..........
Howard Glick
Thanks Howard, this is a wonderful blog. It is communicating to the world what I already know, that your journey has been remarkable, the admiration and respect I have for you is equally remarkable. The potential of this blog is for caregivers, the medical and legal communities and people managing dementia; it's already a contribution.
ReplyDeleteHoward...I have been reading your articles as linked into the FTD forum. I want to thank you for your candid accounts of what is happening to you. As I read I am getting new insights that will help me to better care for my loved one. I believe they are feeling more comfortable with how I am handling things due to what I've learned from you and others as yesterday he told me he was feeling another episode coming on. Episode being an emptiness in his head, kind of like being asleep, but awake at the same time. He can't focus and has had moments of confusion. At the same time he may have a headache and/or dizziness accompany the empty head. He says it's an odd feeling inside his head and touches both sides of his head toward the front sides. Anyway, thank you so much.
ReplyDeleteHi Pam,
DeleteYour very welcome. Feel free to write me anytime at howardjglick@gmail.com
Howard
Hi Howard,
ReplyDeleteI don't know yet if I have dementia. I have been having some trouble remembering how to spell words, and doing certain things. I feel like Alice in Wonderland. I go into some kind of zone that keeps me aware but not wanting to talk or do anything. I just am getting over encephalitis and I have volume loss in the frontal lobes in my brain and I am wondering if I am starting to have dementia. Going through testing now and will not know anything for a few months so it is very upsetting to not know and see myself : not interested in music any more, not wanting to be social, forgetting how to start the lawn mower, forgetting how to spell the word there, not understanding what some things mean when I say them. It feels like I am not me anymore like I am someone that I do not know. I laugh and cry at nothing and repeat certain words over and over again and don't know why I do it. I know that I am doing these things though but I cannot explain it. I feel like I am going crazy. Alice in wonderland again. My name is Lora and my email is liquidblues98@yahoo.com. I would appreciate any incite.