Thanks for joining us as we share our stories, experiences, knowledge, good times and bad times. About the terrible disease of dementia.
You might be wondering what the name has to do with dementia or Alzheimer’s. Well, I first came up with the name several years ago, after my wife had spent several weeks with her mother out of state. She was at the house and wanted to go somewhere our teenage son was at the house and had the car keys. He called me a told me that mom wants the keys to the car. After a little inquiry, I told him to go ahead and give her the keys. He protested, but I explained that I had installed an app on her phone and that I could locate her if she got lost. I knew where she was going and felt comfortable with the route and felt that she knew it well enough to drive without getting lost or endangering her self or others. So, we hung up and a few minutes later my wife was calling me screaming that “our son” would not give her the keys. I spoke to him and he told me that he did give her the keys. I could hear my wife in the background saying “that is not the keys”. Granted it was not a conventional key but an electronic dongle which just needed to be in the car to start it. However, I knew at that moment we were at the end of her driving days.
It is one thing not to know where your keys are, but it is a totally different thing not to know what keys are.
As I am writing this we are into our seventh year of coping with this devastating disease that slowly steals the very soul of the people it possesses. It is a long slow journey that not only takes its toll on the PLWD (person living with dementia) but also the people around them.
That brings me to the second meaning of ‘What Are Keys’. I am forced every day to find new keys to help my wife as we battle this disease. I hope to share some keys that I and others have found that may help to unlock some of the anger, frustration, anxiety, that befall the PLWD, caregivers, family, and friends. The key that worked yesterday may not work today. The change may be slow, or it may be sudden. Not only are forced to find new keys but you must have several locksmiths on call. Because the key may be lost, and you need someone to help may a new one or change the lock. I have several locksmiths in my life, support groups, Alzheimer’s Association, friends and family, outside caregivers.
As the disease progresses you and the PLWD will pass through many doors. Some will be like a revolving door just going in circles, other will be like the fun house at the county or state fair fun, silly and happy, but the next door is fraught with fear. Some of the doors you will pass through many times. However, all the doors will eventually be locked the keys thrown away and the doors boarded up and nailed shut never to open again.
This disease is terminal, there are no survivors. There is no known cure. There are no known causes. Yes, it is known that Alzheimer’s suffers have plaques within the brain, but there is no smoking gun as to what caused those plaques. It is a very slow death as the brain deteriorates and the PLWD slides backward in their mental age abilities until they are but a shell of their former self. It is not just a disease of the elderly but strikes people in their 50s, 40s and even in their 30s. By the time most are diagnosed they have been living the disease for years. The third meaning of ‘What Are Keys’. Misidentified keys or unknown keys. Have you ever looked at a keyring or old keys you have stashed in a drawer or box somewhere and tried to remember what those old keys went to? Well, I have, and I missed a lot of keys prior to my wife being diagnosed with dementia. First, I never thought that she was suffering from dementia. Second, I did not know the warning signs. Most cases of dementia are usually diagnosed in the later stages rather than the earlier stages. The keys and the doors were there, but we fail to open them. As we look around and go past the doors for 4, 5, 6, 7, 8, 9 or 10 or more years, earlier detection may help to slow down the progression of the disease.
That brings us to the fourth and final key within ‘What Are Keys’. The keys researchers need to cure this disease. By detecting the disease earlier rather than later they have a better chance of following the progression. You or someone you know could be that key. It requires early detection and enrolling in a clinical trial.
2 Replies to “The Story Behind The Name”
Brilliantly and beautifully written. Many in your situation will learn from all the information you have shared.
Thank you, Patty.