08.10.18 Alzheimer’s and Dementia from the patient’s perspective reblogged from January 2015

August 14, 2018 –  Since I originally wrote this in 2015 I’ve found two very interesting dementia patients who still communicate pretty well.  One, Rick Phelps, started a Facebook group called Memory People. Here is a link to that group: Memory People on Facebook   I’ve shared some of Rick’s writing before and plan to share soon one he just wrote about “anticipatory grief.”

The other dementia patient, Peter Berry, publishes on Facebook a weekly video on different dementia topics and an update on how he is doing. Here is a link to his facebook page: Peter Berry On Facebook

10460724_539323889537944_4082775068952904086_nThis 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!

i am still here graphic to go with song

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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.

1d-510 REQUESTS1d-5

The following links are to stories from Alzheimer’s patients. Please spend some time reading each one of these stories told in a way that only they can:
|108I just found this blog called Welcome to DementiaLand by Wayne who does have a last name but I couldn’t find it just now.  I don’t know whether it’s my brain issues or his that make navigating his site difficult.  His level of sharing is great though and I felt strongly it should be included here.  

http://dementialand.chewtor.co.uk/#category2

108

Interview with Alzheimer sufferer Richard Taylor: ‘You turn into a person you don’t know any more.’

http://www.spiegel.de/international/zeitgeist/interview-with-alzheimer-sufferer-you-turn-into-a-person-you-don-t-know-anymore-a-688049.html

108

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer’s but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

http://www.agingcare.com/Blogger/David-Hilfiker

108Harry Urban has lived with Alzheimer’s disease for seven years, “We have no typical days. You have your good days, your bad days and your Alzheimer’s days,”

http://www.agingcare.com/Articles/alzheimers-patients-share-their-experiences-153702.htm

1d-5guilt.

The video below  of a five year old singing “Peace in Christ” seemed appropriate to me to share with you today.  As a Christian with dementia, having peace in Christ is what gets me through every day. I hope you enjoy hearing this song!

Until next time,

psalm 26 73

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Click on the links below to go there!

Dora and the Explorers

Wacky Wonderful Wednesdays 

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