by Sharron Warren

Archive for August, 2014

PUT YOURSELF OUT THERE

ALZ coozie

August was a most fun month starting with a week on the Outer Banks.  Great weather, good food (we stayed at a motel this year so NO cooking for me!!) poor shopping BUT we did get to see a Native American Pow Wow.  While the tribe was small they were loud in voice and drums.  A most interesting way to spend a cloudy day.  Since most Alzheimer’s people do not sleep well I bought a handmade Dream Catcher to capture what dreams I do have. When I’m relaxed, with no decisions to make my mind feels settled.  Speaking of decisions one big problem I had this vacation was packing – that has NEVER been a problem for me as we made a packing list years ago but the frustration was overwhelming – then came the meltdown.

I still try to stay alone as new conversations stress me and I find myself rambling on and on.  Questions like “Where are you from?” are OK but then specifics start and I realized I’ve been talking, again, about things that either did not happen or I have the dates wrong and then I look to Tom for help.

If you have Early Stage Alzheimer’s you can understand these little frustrations.  As I’ve tried to explain to friends and family & several times in my BLOG – they may experience things similar to this but it’s not the same.  It is so hard to explain and with most folks I just give up and listen to how they do the same things and how we are all getting OLDER (remember that Alzheimer’s is not an old person’s disease) and I walk away frustrated that they do not understand. What I experience and what you may experience are so totally different.  This is one of the main reasons I do not tell many people.  We had a discussion in our group again about telling friends, family and neighbors but the above is why I am very select in who I tell.  Here is where I am:

  • Noticeable problems coming up with the right word or name
  • Trouble remembering names when introduced to new people
  • Having noticeably greater difficulty performing tasks in social  settings forgetting material that I have just read
  • Losing or misplacing a valuable object
  • Increasing trouble with planning or organizing

I decided to not be so select as discussed in my group meeting and I let my small neighborhood know what was happening to me through an email newsletter that our Board sent out for me.  I included my story that is very personal to me as well as links to the walk, donating and information about the raffle tickets.  Our support group has talked about sharing and I never wanted to take this step but decided “What the heck!”  I hoped to hear from more neighbors but we never know what goes on in other peoples homes. I hope to educate, not irritate.  I will still be there to help any neighbor who needs me.  I will support them.

On to better things like my two youngest Grandchildren who have no clue that anything is wrong with me and that makes me happy.  As long as I keep driving and remember their names they’re good.  Last month we did a special lunch for one child at a time and it was wonderful.  They got to pick the restaurant and off we go, just the three of us.  We are doing one last day at the River Beach and another special lunch before school starts.  It’s wonderful and carefree and I can be ME.  It is wonderful that Emma loves her GrandPa Redd so much and I’m ignored but Riley loves me more in his own funny way – always telling me that I smell good and that he will hug and love me even when he’s a teenager.  I pray every night that my mind will be there.  I so want to see both of them graduate from high school and head off to college.  This is where my Dream Catcher comes to use.

Our Williamsburg EASE Carepartners Walk is October 25th .

Please join to walk with ME!!  Donations are always accepted but not required to walk – just wear purple.  I also have raffle tickets – $5/each for a 2014 RED Camry.

Link if you want to sign up to WALK: http://act.alz.org/site/TR/Walk/General?pg=informational&fr_id=5706&type=fr_informational&sid=18128

If you just want to donate to my cause: https://act.alz.org/site/Donation2?idb=1731837125&df_id=21953&FR_ID=5706&PROXY_ID=9353436&21953.donation=form1

Tom and I have been asked to speak at the October walk and we will also do a local radio interview.  I will place the YouTube link in the next BLOG.  I am so excited to be a part of this wonderful organization.

 

Our vision is a world without Alzheimer’s

 

If you have any problems or questions please email me: slbeach703@hotmail.com

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FRIENDS ARE THE BEST

AD5

Summer and Life is Easy?

My favorite time of the year is sailing by but before the hot sun leaves we have two more beach trips planned.  Something about sand, sun and surf that soothes the soul.

It’s been a busy month visiting friends. I feel the love and support.  Thanks to Jim and Karen for being such good friends.  Thanks also to Steve & Jamie for the long weekend and pug heaven!!

We also made it to our lawyer – what a relief it is to have all the legal papers done.  As I said before, please do this task as it’s never too early.  I feel at peace that all my wishes will be honored but remember that there are still a few things you may want to express to your family that do not go into legal documents.

If you watched the video from my last post you may understand me a little better.  I can still carry on a conversation though some of the dates and events might be wrong and I may repeat myself a lot but most people still do not notice any difference.  Yippee, feeling normal.

Please remember that Alzheimer’s is not an OLD person’s disease. So many people do not realize this.

We started our new monthly support group and as in the past I was the only female there.  Tom tells me that men Care Partners are not as good at seeking help as female Care Partners so I definitely got a good guy!  I hope we can all learn from each other.  There is always some anger and frustration at these meetings but for those of us living this life that will not change – every day is a challenge.  One of the questions asked was how can the Dr. say you have Alzheimer’s as there are usually no clear tests until you are dead and undergo an autopsy.  I’ve learned that it’s a process of elimination…………they rule out diseases (some do MRI’s and/or spinal taps) that can cause dementia, they talk to your Care Partner and they talk to you and then there are the mental testing.  Since 95% of all dementia is of the Alzheimer’s type and there are no brain tumors or other illness – you have your diagnoses!!  No one wants to be labeled but having a diagnoses can open doors for possible medication, research and clinical trials.  In the past year since my original diagnoses Tom and I have noticed a decline.  Not what I want to hear but I am also smart enough to know that this journey of mine is only downhill. Bucket list – here I come!

Concerned and understanding friends are hard to come by therefore I want to thank a long time friend who went through cancer only to come out stronger and wiser. She has been a great inspiration to me.  She senses when I’m down and her beautiful words sooth me.  She has also learned from her experience how to love and enjoy life.  We both are working through our Bucket List.  I have another long time friend who makes sure to call me every couple of weeks just to chat.  I appreciate this even more knowing that she has struggles in her life right now.  We also have great friends that we just spent a long weekend with!!

Thank you my friends.

Our Williamsburg EASE Carepartners Walk is October 25th .

Please join to walk with ME!!  Donations are always accepted.  Please contact me for more information.  We also have raffle tickets – $5/each for a 2014 RED Camry AND my Walk donation page will soon be on FB.

Link if you want to sign up to WALK: http://act.alz.org/site/TR/Walk/General?pg=informational&fr_id=5706&type=fr_informational&sid=18128

If you just want to donate to my cause: https://act.alz.org/site/Donation2?idb=1731837125&df_id=21953&FR_ID=5706&PROXY_ID=9353436&21953.donation=form1

If you have any problems or questions please email me : slbeach703@hotmail.com

July was an amazing month – looking forward to the rest of August.