Sunday, October 29, 2017 – Wow, when I first put this post together almost three years ago, it was to help others understand the dementia their loved one had from the patient’s point of view. Now looking through the various stories and songs I provided links to below, I realize that things from each of their stories are now part of my little world having dementia myself. I wasn’t where they were at that time I originally put the post together but things have changed.
I truly hope you take the time to read the stories, poems, prayers and listen to the songs. Dementia is not just about losing your memory. My balance while walking is pretty bad, I often have problems swallowing, putting a sentence together is quite a chore on occasion and planning things or making decisions have become difficult. Being with people has always been something I thrived on, now I prefer to be alone with just Roy. I can no longer drive and depend on Roy to go everywhere with me. This and more are added to the memory loss which is growing all the time. I think that reading these first person stories about people living with dementia will help you see what I mean about it’s not just losing your memory.
The original blog:
This week I want to share about Alzheimer’s from the patient’s standpoint.
“I’m Still Here” is a song about dementia, written from the patient’s point of view. It can be a helpless feeling after you get an Alzheimer’s diagnosis, and the support of your loved ones can help ease the stress that this disease causes. Click on the photo below to watch this short video!
ALZHEIMER’S PATIENT’S PRAYER BY CAROLYN HAYNELI
Pray for me, I was once like you. Be kind and loving to me, that’s how I would have treated you. Remember I was once someone’s parent or spouse. I had a life and a dream for the future.
Speak to me, I can hear you even if I don’t understand what you are saying. Speak to me of things in my past of which I can still relate.
Be considerate of me, my days are such a struggle. Think of my feelings because I still have them and can feel pain. Treat me with respect because I would have treated you that way.
Think of how I was before I got Alzheimer’s. I was full of life, I had a life, laughed and loved you. Think of how I am now, my disease destroyed my thinking, my feelings, and my ability to respond, but I still love you even if I can’t tell you. Think about my future because I used to.
Remember I was full of hope for the future just like you are now. Think how it would be to have things locked in your mind and can’t let them out. I need you to understand and not blame me, but Alzheimer’s. I still need the compassion and the touching and most of all I still need you to love me.
Keep me in your prayers because I am between life and death. The love you give will be a blessing from God and both of us will live forever.
How you live and what you do today will always be remembered in the heart of the Alzheimer’s Patient.
The following links are to stories from Alzheimer’s patients. Spending some time reading each one of these stories told in a way that only they can:
Norman Mc Namara, diagnosed with dementia five years ago aged just 50yrs old.
http://tdaa.co.uk/norms-pages/
Interview with Alzheimer sufferer Richard Taylor: ‘You turn into a person you don’t know any more.’
Leah, a 58 year old former elementary school teacher, was recently diagnosed with vascular dementia. This blog is her way of reaching out to family members and caregivers of others with dementia and Alzheimer’s who want to know what life for their loved ones is like.
http://www.healthcentral.com/alzheimers/day-in-the-life.html
Harry Urban has lived with Alzheimer’s disease for seven years
http://www.agingcare.com/Articles/alzheimers-patients-share-their-experiences-153702.htm
Please come back next time when I’ll share several links to stories written by Alzheimer’s caregivers. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.
Until next time,
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Saturday, November 4th would be a great day for you guys to come visit, if you are up to it. I would love to visit with you. Let me know … You can choose any other day that you want if that day is not good for you. Love you xoxo
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