Tuesday, May 29, 2012

Loosing a Piece of "Me"

By Ruthanne Monday, April 14, 2008
Each day a little piece of 'me' disappears.  I see it go, sometimes, but I can't get it back.  I can't multi-task anylonger, and I was Queen Mulitasker.  Reading mystery novels and judicial drama novels has been my hobby for years.  I could finish a novel in 2 days.  The book I'm now on I have been reading for 2 weeks.... I'm on page 64!!!!  I can't remember anything I read.  I HATE THIS!!!!!!  ok..... I got that out.  I'll behave.... perhaps.  ......................  There are no groups for US.... everything out there if for the Caregivers.  There has to be other people out there that have this ..........  grrrrrrr..... can't say the word..... disease!!!!  Yes, I am angry.  Yesterday I was the nice 'me'.  Today I am hateful.  Tomorrow... who knows.... OK..... that is a beginning.....    Ruthanne  66  EOAD
4/15/08 3:23pm

Dear Ruthanne,

 

Thanks so much for your post and welcome to our community!  I think you may have found a place where you can find others in your similar situation.   I am the moderator for the site and hope I can help you find answers to questions or at least lead  you in the right direction.

 

There are two items I think might be helpful to you.  The first is the Alzheimer's Foundation of America.  They have a hotline (1-866-232-8484) that you may want to consider calling for help and their Social Services Team makes regular posts to our community.  As well the Alzheimer's Association has local groups for support.

 

I also encourage you to read the posts in A Day in the Life of a Dementia Sufferer.  It is written by Leah who is 58 years old and is suffering from vascular dementia.  Her perspectives are real and honest and inspiring all at the saem time. 

 

Hope this helps - all the best, sue  

4/17/08 9:34am

Ruthanne,

 

Your feelings are understandable. My mom also felt the same way when finding out she had this disease (has you call it.).  The experience is all new to you, and right now, you are in some form of denial. What helped my mom express all her range of emotions was an early stage alzheimer's support group she attended for persons with Alzheimer's. This support group was offered through our local (Philadelphia)Alzheimer's Association chapter. Call the 24 Hour Helpline of the Alzheimer's Association 1-800-272-3900 or the website www.alz.org for more information.

 

7/22/08 12:33pm

My Dear Ruthanne,

 

You have hit the nail on the head. I feel exactly like you do. I feel like I have lost so very much. But on the outside, I look normal. I am however, totally consumed with watching myself for every little loss that comes. I beat myself up emotionally and wonder if anyone noticed. I have only told a few people. I don't tell people that it is my early onset Alzheimer's that make me forgetful and less capable, I say it is my fibromyalgia acting up. I wonder if people wonder why I say I am retired at age 57? I now say it it is medical, stress and fibromyalgia. I feel guilty about applying for social security disability. I DID NOT WANT TO QUIT WORK! I was FORCED to. I simply could not do my job.

 

Every day there is a little less of me and a little more of the alzheimer's. Thank God for Aricept and Namenda. They have made the downhill slide go so much more slowly.

 

Lynn

7/23/08 9:58am

Hello Lynn......Thank you so much for your response to my post.  It was the first one that truly stated that I was clearly understood.  I have been doing a bit better, but I still see daily changes.  I am open about the Alz., and I think that people that want to stay away from me, because of my disease, are better off just leaving me alone.  None of my 4 adult children have read anything about Alz.  My husband is the only person in my life that totally supports me, and doesn't 'put me down' when I do 'strange' things.

I would like to hear more about your, and welcome you to write to me again.  I will always answer as soon as I get the notice that you wrote.

 

I used to teach 40 piano students.... before the beginning of this year.  I now have 10.  I can no longer teach beginners... the theory is a stumbling block for me as to number sequencing problems.  My doctors don't want me to drop any more students.  I have kept the ones that are more advanced.  My ability to play/perform has not changed, but I must use the music.

 

I live in northern Ohio, near Lake Erie.  Thank you so much for writing.

Best to you.... Ruthanne

7/23/08 11:20am

RuthAnne,

 

For years I thought I was either going crazy, was lazy, or just plain stupid. Why could I not remember things I had known how to do for years. How do you turn off the cruise control in the car when you are driving for example. How stupid of me not to remember I thought! Why can't I remember the word kleenex or tissue. Why did I have to stumble around and then say pass me the nose napkins please. Why couldn't I learn how to run a simple report from the computer software at my new job. It looked simple. Even with every step written down. I could not follow it and remember how to run it a second time, 5 minutes later,  if I made a correction to the report information.

 

Downhill I went two years ago when I changed jobs! I think the stress of trying to keep it all together made it much worse. I was "a suit" for years. I traveled across the US for a National Company as a professional speaker/lecturer/teacher doing Medical Office Management Seminars. From Medical Terminology, insurance billing and coding, Medicare. I taught it all. I dealt with hospital client/sponsors and did in-office consulting & business management for physician offices. I went up the ladder in the company and was promoted to be in charge of the Professional Services Department for the company. I hired and fired speakers. I wrote the teaching curriculum.  Very high pressure. After 12 years in the company, breast cancer, fibromyalgia, and my husband's heart attack I decided I could not take the travel. 5 days a week. 3/4 cities in several states each week takes a huge toll on the mind and body. I lived in hotels, airplanes and hospitals. I am 57 years old now and my body said "Nope you can't do it any longer". My brain said "Hey, I ain't gonna help either, I'm tired so I am gonna trip you up every chance I can." 

 

So 2 years ago  I went back to the Dental field. That is where I first started my professional life when my 35 year old son was less than 2. I took on a large practice with 18 employees including 3 dentists and 5 hygienist. I was the practice administrator. As with any corporate situation there were huge written $ and other growth goals with $ signs at the end for me. I made great money. On the outside everyone thought things were great. With my background I should have been able to do this job in a snap. But this was the beginning of the end. I had been doing my old job for 12 years. I knew it inside out. I could probably go back and do it today. It was old learned information. In my old job I taught the same thing to different people day in and day out.  Two years in that new job with "new" tasks with excellent training at the beginning and I still did not know the software among other things. That is so typical of Alzheimer's. Can't learn/remember new stuff!

 

But Hey ..... my practice was # 1 for 2007. Out of 50+ dental practices owned by this company in 3 states, financially (based on profit/loss). Keep in mind that #1 had nothing to do with being the largest practice (most employees, doctors, patients and dollars billed out and collected) with some of the most difficult situations in the company.   I had the #1 practice base on key operational goals and growth compared with the previous year. Mind you however, I was not the #1 Team Leader. Operationally, and based on the report card criteria I was average at best. Getting reports in on time etc. Getting the massive amounts of paperwork associated with running a million dollar dental practice, I was ALWAYS behind. I worked 60 hours a week. Should not have taken more than 45. I could not understand why I was not able to do it.  At the end of the day, I could not remember discussions with the doctors, phone calls I received and even patients that I discussed $5000 treatment plans with in the morning. Not Good! This Stress did not help but it was not the reason for the problems.

 

I was doing a huge disservice to the practice, the patients, and the dedicated employees that tried so hard to help me remember the bits and pieces they could. On the outside, things looked great but on the inside .... I finally crumbled. Thank God for my wonderful Doctors. They finally had the courage to say it in January of this year. Maybe it was "The Big A" for Alzheimer's. You know doctors will do anything not to use that word on a young 50ish successful looking professional woman.

 

Diagnosis day was a blessing. I had a "DISEASE". I was not LAZY, CRAZY, or STUPID as I had been feeling. There is so much more to the story. But I tell you all this RuthAnne to say, I WAS THRILLED TO SEE YOUR POST! To see someone finally say that each day they feel like they lose a little of them self. A little of their memory, knowledge, self-esteem and dignity .... gone. I was and am so surprised to learn that we as individuals identify WHO WE ARE by WHAT WE DO! When you don't have anything to do you must not be Anything? Is that how you feel?

 

I was officially diagnosed in late February and retired March 8, 2008. It has taken me until now to accept forced retirement, learn to live in shorts and flip flops, and enjoy it. We have 75% of the income we once had but that is OK. I have a future to plan.

 

Thank You ~ Thank You. You are correct. Most Everything is for the Caregiver. Rare to find the Early Onset Patient participating in anything. I think they are either hiding or struggling to keep all of the balls in the air. I wish I could make a difference not only in my life but in others. This is not a shameful disease. We need to speak out and let others know that Alzheimer's is not just the "shuffling, empty look in the eyes, elderly person" they see or perhaps know in their mind.

 

Perhaps we can talk on the phone. I would love to talk with someone I can relate to on a personal basis. I actually live in Boerne, Texas and that is right outside of San Antonio. I have a cell phone with 1000 minutes of roll over time. Seems I don't need to talk 400 minutes each month any longer so they just roll over and I lose the excess. I would love to use them. Perhaps there is a way to send a private message with your phone number. I would love to call you.

 

Sorry this is so long.

 

God Bless, Remember that God Loves Us All!

 

Lynn

7/24/08 12:50pm

Hi Lynn,

Thanks for writing.  Never apologize for letter length.  I will enjoy every single word.  What turmoil you had to go through with your job situation.  I'm glad that you are home, now, and can still use the computer.  I have not found one single person in any of the support groups that can do email.  I sometimes think that they just have not tried, or have been told that they are not capable of using the computer.

 

I have seen/heard some husband 'caregivers' speak so rudely to their wives that they are now convinced that they are incapable of doing anything of value.

 

I would love to talk to you, but don't know how to give my phone # without it being public.  Same with email address.  If there is a way, please let me know.

 

Today is not a good day.  I'm not feeling well, physically, and as a result, been a real bitch to everyone around me.  Hubby is also in a snit, so we are NOT good for each other today.  I really look forward to talking to you again.  Thank you so much for writing.

Best to you.... Ruthanne  7/24/06  Thursday

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By Ruthanne— Last Modified: 12/19/10, First Published: 04/14/08