Sunday, February 12, 2012

The long good bye or the daily hello

It is always startling to me when someone I know, even if only through some make believe roles in make believe movies, dies and has been prior to her/his death living with a diagnosis of Dementia , probably of this or that type.

 

Someone found the press release Mr. Heston read announcing his diagnosis, and I just read it.  Reading Charleton Heston's announcement that he had been diagnosed with Alzheimer's disease reconfirms for me that many, too many individuals, even those diagnosed with the disease see the diagnosis as the start of a long good bye.

 

We announce and prepare ourselves and others to the fact that we have already started to fade away. It started the moment someone in a white coat told us “You have Dementia, probably of this or that type, and certainly with these features.” I’m on my way out! It’s all downhill from here! Don’t look for me anymore; I’m going to be busy fading away and not being me.

 

We are seldom seen post diagnosis. We seldom speak up or speak out post diagnosis. After all we are fading away. What could we have worthwhile to say? Could we possible grow as a human being after we have been diagnosed? We become someone we would be embarrassed to be were we capable of appreciating who we had become!

 

Are we? Will be embarrassed for ourselves? Who is embarrassed for whom? How do you know I'm not accepting, perhaps even contented with who I am today. Even if I'm sometimes frustrated. Even if I'm sometimes agitated. I'm still me! 

 

Isn't it time others who don't live with the diagnosis focus their energies on understanding, appreciating, supporting, enabling those of us who do live with diagnosis? Don’t concentrate on who we were? Don’t try to convince us we should hang on to yesterday, or last year, or fifty years ago – when we are struggling to understand today.!? 

 

Wouldn’t it be easier to love someone we believed was a whole person, instead of someone half empty? Instead of someone who is literally a shell of who they were?  

 

Is it any wonder people find us hard to love when they find us so hard to understand? to appreciate for who we are? to accept our changes, our symptoms, our forgetting and confusion. Of course it is. Some people with dementia and many caregivers keep saying good-bye. I, and I honestly believe every other person living with and in dementia need to hear, feel, and be supported by saying "Hello!" 

 

This is not an issue just for those in the late stage of the disease, nor just for those in the mid stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to find the courage, the support, the understanding to say hello to ourselves and each other.

 

Every day! Every day! It's that simple! It's that easy! Reduce stress, increase love you give and receive, enjoy and live in today.

4/ 9/08 11:40am

Thanks Richard - again for standing up and shouting to us all that their is hope.  I think all of you that come to our site and posts your thoughts and feelings and opinions are teaching us this valuable lesson.

 

Some may be interested in reading The Day in the Life of A Dementia Sufferer.  It is the chronicle of our expoert Leah's journey with vascular dementia.  She is very special and really a great lady!

 

All the best, sue (moderator) 

4/13/08 5:56pm

Hello Richard.... 1st time at this site, just read your letter.  How beautiful. Thank you for your thoughts.  I am 66, dx 4 mos ago.  I already see people withdrawing from me in my life.  And I'm still almost, kinda, sorta, a bit, normal.  I used to be really funny.  Great sense of humor.  Now I am not so humorous.  My husband is wonderful through all of this.  He only gets on my nerves a couple times a day.......  But he is a blessing.  I feel as though I lose a little piece of me each and every day.  I have lost a lot this past month.  Our 4 adult kids.....  pretend Mom is just fine.  Let's not talk about her forgetting that we drove 10 hours to come see her for Easter. 

 

Ooops.... Richard.... thank you for being here.  I hope I get to meet other people that are open and ready to talk about the BIG A word.

Best to you..... Ruthanne

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (1454) >