Alzheimer’s & Dementia – Is Brain Functioning Really Lost?
Alzheimer’s & Dementia –
Is Brain Functioning Really Lost?
My name is Michael Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.
I have learned that as we progress with Alzheimer’s/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.
It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.
Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.
Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer communicate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.
I don’t want you to think it’s going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer’s. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.
When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your love one.
Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like “do you love me? If yes lift your finger or lower your finger”. Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to ensure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.
Also keep in mind if the person has not had any real dialog with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong.
If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.
Click on the logo below to go to Michael Ellenbogen’s website
For more resources check out Alzheimer’s Speaks by clicking below
I had a very powerful experience one day recently when I went to visit my mother in her end stages of Alzheimer’s on Mother’s Day, at the nursing home. At her dinner table where normally all people sit quietly and little communication is perceived; there was an awakening.
What triggered this?
A simple and inexpensive change. Out went the boring white placements and today on the table were bright floral placements with beautiful roses.
As I approached the table I commented on the beautiful bright addition to the table setting. To my surprise, each and everyone sitting at the table almost in cue, raised their heads, opened their eyes, rolled out a brilliant smile on their faces as each looked at the gorgeous flowers before them. From that point forward I talked about about flowers and spring and all were engaged. There was a joy and happiness that almost glowed from all 6 residents at the table. The three staff also at the table were amazed and intrigued at the difference a simple placement made.
So is the ability to connect lost, displaced or is there a need to ignite the connection? I say, from my multiple experiences over the past 30 years, we need to find new ways to ignite connections and encourage people to look for new signs of engagement.
Thank you for sharing your important and beautiful observation!
Thanks for stopping by and taking the time to comment
Lori
Reblogged this on lava kafle kathmandu nepal <a href="https://plus.google.com/102726194262702292606" rel="publisher">Google+</a>.
Hello Michael & Lori,
I think the question begs splitting. Do we loose are ability to think or does the brain loose its’ ability to function? I like Michael have outlived the expected time period. But I believe that both are lost to a degree. I know I can no longer link in the terms or the level I was could. As the brain cells die and the brain shrinks from what little knowledge I have this affects the ability of the brain to tell the body systems what to do. That is why in the very end stage our organs and systems shut down one at a time. I have written about this on my blog. I know you both would agree, that those of us that can still tell our stories and how we live with this condition, we should.
God Bless,
joe
HI Joe
Thank you for writing. I always appreciate your comments and you are right! We need to hear your voices. Enjoy your week
Lori
This was so encouraging to read. I worked in memory care for quite some time and always felt that while it was precieved that the individual was disengaged and/or unable communicate the way staff and family members preffered; that each individual was still present. It’s our job as care providers and humans to be purposeful and discover what that individual needs – it’s true person centered care.
Taking the time to engage is vital and many times is lost in clinical shuffle!
HI Jessie
I am so glad you found the post helpful and affirming to your work.
Lori
wonderful information. Sounds a bit like Aphasia. We have so much more to learn about how the brain works and processes… let alone how to get it back on track. Keep thinking.
Yes you are right we must never stop thinking!
Lori
We know that people who have dementia can still learn, even new coping skills or ways to help themselves heal. I see it all the time in my work as a music therapist and Certified Validation Worker. Great to read a post from someone who is able to articulate a firsthand experience of having dementia; it is precious, invaluable information.
Thanks for taking the time to comment Ashley. Your in put is important!
Lori
I recently removed all Alzheimer’s medications for my husband and instead introduced Prevagen, Lion’s Mane, and Super B Complex. Early this year I had introduced coconut oil and Pycnogenol. To my surprise he started talking again and asking me questions. He was making movements with his legs and arms that he had not done in several years. He now wants to listen to recorded books at night, etc.
I can tell you that Alzheimer’s does not mean you lose your brain functioning. It is impaired, even to the point of disability. However, it appears that there are ways of feeding the brain the right vitamins (as I listed here) and will proper diet. The brain is like a potted plant. If you don’t feed the plant, it dries up and dies. I believe I may have found the right food for my husband’s brain.
At the very least I feel he will have a better quality of life. Who knows, maybe I am buying him time until something better comes along.
Keep the faith everyone so we can come up with great solutions to this devastating condition that is affecting all of us.
~ Ethelle
Pioneer in Alzheimer’s Coaching
Hi Ethelle
It is so nice to hear your results! Thanks for sharing
Lori