A LOOK FROM THE OTHER SIDE OF DEMENTIA
AN ANGEL IN DISGUISE
As I was trolling on Google+ recently, I came across a very unusual post. It didn’t have pictures or headlines. It could have been easily missed. but it caught my attention anyway. It was written by a new friend Mr. Norman McNamara.
This post had only a small title across the top that said “One Man’s Perspective” that’s it.Those three words that stopped me in my tracks. When I read the rest of the post it brought tears to my eyes and I thought about it for the rest of the day. It was brilliant, easy to read and it broke my heart.
Mr. McNamara is the founder of Torbay Dementia Action Alliance and is also the author of 3 books. He is also blogging about his journey of having been diagnosed first with Alzheimer’s related dementia and then finally with Lewy Body’s type. This is another form of dementia that includes hallucinations. He was diagnosed 7 years ago at the young age of 50. He is a self-made, self-taught man who like me holds no degrees.
He said that he started writing as an outlet for his emotions. Because he was so young when he was diagnosed, there were no services to help him, at the time. He was asked by a forum called PPoint to put his writings into a book, now 3 books later he says “…and the rest was history“.
I asked him how he felt the diagnosis had changed him. His reply was simply “It made me look at life a whole new way and not to expect to much. I now know however, that you only get out of life what you put into it”. He is a remarkable man in my opinion who not only shares his struggles but also raises awareness to help other people in the same situation he has found himself to be in.
What an inspiration he is. This is the post that I read that day…
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The room I am sat in isn’t that big but seems to be getting smaller, the light coming through the windows is disappearing and it’s getting darker every minute. I can see thousands of pictures of my family adorning the four walls that surround me, and yet they look like they are disappearing one by one! The light above my head starts to flicker as it gets darker outside. Images of my past flash in front of my eyes as the light bulb fights to find a full connection.Distant sounds emit from the walls, sounds from my past, voices of loved ones long gone, searching, calling for me. Its getting darker as I struggle to see any pictures of my family now, I am sure the walls are closing in on me, not sure, but they look much closer than before, the curtains gently close in every window with a silent Swish, the light stops flickering and eventually goes out, the light from outside diminishes even further until eventually all is black.
“””””””””””””””””””””””””””””””””””””””””””””””””The TRUE horror of Dementia, from a person who is living with this awful disease, please share if you want to, but will understand if you don’t CC Norrms Mc Namara Diagnosed aged 50, now nearly 57 and still fighting it xxxxxxxxxxxxxx
This was haunting. I find myself more and more moved by the awareness aspect: that one knows what’s happening while they are at a loss to slow it or change it or halt it at all. It’s a goal of mine to become better at communicating with people who suffer from this. I can’t imagine what that isolation feels like.
It is something I have wondered about. It is an important goal for sure Susan and something I think the whole nation needs to work on! Thanks so much for commenting.
Excellent interview and research, Rena. Glad that Norman can educate this cause for first person. I also interviewed an Early Onset lady. She is wonderful. Makes us appreciate all the days we have and all the time we have with people.
Carol
Widow of a Mixed Dementia patient
You are so right Carol, this will definitely help caregivers everywhere to know what their loved ones are going through without have to guess.
Wow, Norman was so young when he was diagnosed. I can not even imagine dealing with this.
Yes he is young and there are lots out there even younger than him! It’s called early onset Alzheimer’ and can affect people in their 30’s. It’s a very sad statistic!
What a perspective he gives, how vivid how relatable, how disheartening. Thanks for sharing another view.
Thanks so much for your comments Haralee! It is a vivid look into a scary reality. It is something that I definitely will never forget.
Thanks so much for sharing this Rena. One of the hardest parts with my mother in law was wondering what was going on inside her head. What an amazing man.
Thank you Lana for taking the time to comment. Norman McNamara is an amazing man. He has taken a devastating illness and turned into his life’s mission. He’s an inspiration!
What an amazing perspective! I’ll have to get my hands on his books so I can read more.
That is one of my goals to sit down and read these books. I bet they are amazing and inspirational. Thanks for commenting Melissa!
Heartbreaking, sad and wonderful all at the same time is what I thought when you “met” this extraordinary human being.
That’s what I thought when I read it too Cathy! Amazing! Thanks for taking the time to leave a comment!
That was so moving and really made me think about his quote. I attended the AARP conference this week, and spoke to so many people who were caring for family members with dementia or Alzheimer’s. It was very sobering, but their attitudes were amazing. Very inspiring.
It is definitely becoming an epidemic in today’s society Lois! Thanks so much taking the time to stop by and leave a comment!
Thank you so much for sharing this with us. I am still haunted by the early days of my grandmother’s illness when she would slip in and out and knew she was going. That was so much worse than when she was completely “gone” and would speak in German. Horrible, horrible disease. God Bless both of you for shedding light on this illness. xo
I quite agree Kathy. Sometimes my mother gets a look on her face when I know she realizes what is happening to her and it just breaks my heart. Thanks so much for commenting!
A positive attitude is key to maintaining a happy life in this situation! Thanks for sharing this story,
A positive attitude is very important Krystal but sometimes I think it takes much more than that to deal with the ongoing horrors of Alzheimer’s/Dementia. Thanks for your comment.
Thank you so much for sharing this, I’ve been worried about dementia ever coming into my family.
Knowledge is always the key to success in anything! Thanks so much for commenting.
I always wonder how my mom felt. I believe she was partially in denial which made it really hard for us and her.
It does make it harder and something I also deal with on a daily basis. I suppose it is fear of the unknown that drives that denial. I often look at my mother and wonder what she is thinking at particular times. Thanks for commenting.
My Mom has dementia and it was powerful to read Mr McNamara’s account and get insight.
I so glad it helped you Ines. That is the most important step of any caregiver or family member is to learn everything they can about this dreaded disease. Thanks for commenting.
This is amazing. I’m sending a link to a friend who really needs to read your post..
Thank you Michelle, I hope it and other stories help your friend. If I can be of any help please let me know and thanks for your comment.
What a wonderful point of view this man gives, I feel touched by his attitude and outlook. It’s great reading stories like this because a lot of us are on the outside looking in you know? Great post, very admirable.
Thanks so much Lesley he is an amazing man that’s for sure. Thank you so much for your comments.
This is wonderful, what a great post. I have someone I need to share this with. Thank you.
Great Carmen and thank you very much for your comments. If I can be of any help to your friend let me know.
Thank you for sharing this information! I work in a long term facility and love my patients. They each mean so much to me that I feel good knowing family looks to us to care for their loved ones.
You are a special breed for sure Maria and I am so glad you enjoyed reading about Mr. McNamara! Thanks so much for your work and your dedication and for your comment.
A positive attitude can go a long ways, that is for sure.
It definitely helps Amber. Thanks for commenting.
Inspiring story. I think that it is awesome that he is using his time wisely by bringing about awareness to this disease.
I am sure it is a mission of love Erica. He is definitely an inspiration! Thanks so much for leaving a comment.
That is such a young age to be diagnosed. I can see why he has such a passion for spreading awareness. What he describes is something that I saw my father go through last fall when he was first diagnosed. Such a difficult thing for the person diagnosed and family members to experience.
It is definitely hard on everyone involved that’s for sure Pam. It hard to watch our loved ones suffer as you well know. Thanks so much for sharing your comments.
WOW. I had no idea that you could be diagnosed at such a young age! What courage he has to share so openly!
Thanks for your comments Kristen. Early onset Dementia is growing more and more prevalent in our society and we need to be able to recognize the signs and do what we can to make life easier on the ones who are dealing with this horrible disease.
Very interesting. Thanks for sharing, I don’t know much about dementia but I do know my husbands grandfather suffered from it before he past, so this is something I am interested in reading.
Thank you Jeanine that is my hope to educate the general public about the affects Alzheimer’s not only has on the sufferer but also the family and society as a whole. Thanks so much for your comments.
Powerful testimony. Powerful.
It definitely is Carol. Thanks for your comment.
Truly an eye-opener of an article. Brilliant! Amazing man!
He is an amazing man Diane! I’m so glad you liked it. Thanks so much for your comments.
This is just heartbreaking to read. What an incredible insight he gave.
It is Liz! He has chosen to make some good out of a whole lot of bad. Thanks so much for commenting.
The inside perspective is startling. How wonderful he is sharing, I imagine so much good will come from it (for him, for others, and maybe even from a medical standpoint).
From your mouth to God’s ears Rosey. We all hope and pray for those same exact things. Thanks for commenting.
It is hard to imagination what someone with dementia feels. It is quite something seeing things from their perspective. It definitely hits a chord in my own heart to be more aware of people who suffer from this.
It’s very important Veronica to be aware of other’s peoples suffering as much as possible that maybe we could offer a helping hand when we see someone struggling. Thanks so much for you comments.
What a gift Norman is giving to fellow sufferers and their caregivers. If you haven’t seen the elegiac film called “Iris” with Judi Dench, I highly recommend it. So sad, touching and human.
Thanks for the tip Shannon I had never heard of this movie but will definitely search it out. Thanks so much for stopping by and commenting.
My Grandmother has Dementia. It is very hard to watch. A woman who was once so lively and caring- she is just a shell of herself now because of this disease.
I am so sorry for you struggles Ashley! It is very painful to watch those we live slip away to somewhere we can’t follow. I watch the same thing in my everyday life with my mother. I hope you will be a frequent visitor and if there is anything I do feel free to contact me on my contact page. If there is something you need information on I would gladly research it for you. Thanks so much for sharing and commenting.
I am so moved by his sentiment. I did not know it could happen so early in life. The awareness is definitely needed!
It’s a sad tragedy Elayna. It happens even younger in some instances. It’s called Early Onset Dementia and can affect people in their 30’s and 40’s
I love reading stories like his, so inspirational and amazing to see him working to bring good and help people out of this very difficult thing he is going through. I’m sure it gives him a great sense of purpose and happiness to make a difference and bring meaning to it all.
His is an amazing foundation and one I hope to do some great work for. It’s all about making stores and other places dementia friendly and it’s a wonderful idea. THanks so much for commenting.
As I was reading this it helped me understand what my sis-in-law must have gone through — she passed away last month. Do you think it makes a difference keeping your mind so active?
Thank you for sharing this informative and emotional post.
I am so sorry to hear about your sister-in-law Carol. I dread that day with my own mom. She slips away a little each day but hopefully there are a few years of memories left for us. You are always in my prayers and such a great friend. THanks for you comments.
As you are, my dear friend.
This is so scary. I am all about finding out the causes of problems like alzheimers.
I hope one day we can find a cure for Alzheimer’s and Dementia. It’s a disease that effects lots of families. Thanks for commenting.
Wow, that is pretty powerful. I am glad you shared this.
Thank you so am I. It is so eye opening to see what someone with dementia really goes through. I know it’s a big help as a caregiver. Thanks so much for your comments.
My kids paternal grandmother suffers from dementia and it can be difficult communicating with her. I’m always glad to read more about something that I really have no understanding of from someone who is going through it. Thank you for sharing his story.
Thank you Amanda. It is a very hard disease to understand and is often misunderstood, misdiagnosed and mishandled. I hope to shed some light on the subject. Thanks for commenting.
I believe that sometimes what we see randomly whether in real life or virtually, it has a message for us.. that kind of thing. 🙂 So I guess, you stumbled upon it for a reason
So true Aisha there is a meaning behind even the simplest things. I always want to learn more in the hopes of helping my own mother. Thanks for commenting.