Have you ever wondered what goes through the mind of someone who has just been diagnosed with a dementia related disease? As I have pondered this through the years, I have also asked many people who have been living with the symptoms; 99.9 percent of them say that fear is the first thing that grips their hearts.
Another sad but common scenario is that they hurry to the doctor, expecting some much needed help, but instead their doctor writes them a prescription and sends them on their way. The last thing they hear as they are escorted out the door is, “See you in 6 months.” A medical professional displaying such a blasé attitude is unforgivable! More often than not, absolutely no information was handed to these frightened people. Many have told me that they went home and just cried for weeks!
The reality is this; these people were just given a terminal diagnosis and then abruptly shown the door! In today’s world of online search engines, it’s likely that most of these people went directly home and Googled whatever disease they were told they have. Unfortunately, what pop’s up is a list of frightening symptoms and what the end stages will be like. This only serves to make these people want to lock their front doors, hide under the bed and wait for the disease to come and take them.
Good news! Beginning today, June 1st, there will now be help for the newly diagnosed! An international coalition of people who are living well with dementia, have combined to create a website titled dementiamentors.com. This unique website was built strictly to assist anyone with dementia. The truly unique characteristic is that it is designed and built by individuals fighting the same ailment.
At Dementia Mentors a person will now be able to talk live, one-on-one, with another person struggling with the same symptoms. All they need is a computer with a webcam. Just by clicking the correct link they will be able to do this from the comfort of their own home.
All mentoring sessions will be strictly confidential. They want the person with dementia to be able to ask any question they want to and feel comfortable while doing it.
There is also a page on the website containing several 3 minute empowering videos designed by the mentors to explain how to “rule your disease.” These videos are, without question, amazing! I would recommend that caregivers watch these as well, for there is truly so much we can learn from these people.
Another main goal is to keep those diagnosed with dementia socially engaged for as long as possible. There will be “virtual memory cafés” which are live social gatherings done through the website only for those with dementia. These meetings are a place where symptoms can be discussed openly and safely, or just talk about the weather. No one is judging. The important thing is that when this communication is taking place with folks that are in the same boat, no one will be sinking in a lone vessel of their own.
We know from experience that after receiving this devastating diagnosis most everyone will, understandably, suffer a bout of depression. (I mean, how could you not?) I believe that one of the most important aspects of this project is that it will help stop them from lingering there too long. The first couple of years spent fighting these diseases are crucial. This is where we have to set them on the right track.
Who better to show someone how to keep dementia at bay than someone who has been there and is personally experiencing it themselves? You are not going to get information like this from a doctor’s office, I promise you that.