by Sharron Warren

Archive for December, 2014

YOU HAVE BRAINS IN YOUR HEAD

fd0f57d38a4b6a79ec24e10df11a9465

As I continue this adventure there are ups and downs – do I stay or do I run?  Do I venture out or do I hide?  I know in talking with friends and remembering my life before Alzheimer’s this saying could be for any of us.  We all have challenges, change, loss, confusion, indecision……….on and on.  Yes, I remember feeling all of the above but now these feelings are so different.  There are days I feel so normal.  I lie in bed in the mornings and I feel great – “This is all a dream, I’m thinking clearly, I remember yesterday – thank goodness, I’ve finally woken up!”  This wonderful feeling doesn’t last long.  The mood swings are the worse.  I can not help that I can’t remember but I should be able to control these swings.

I am corresponding with a couple of women at my stage or a little further along and they all feel the same way………….at certain times they feel SO normal and wonder if they really have Alzheimer’s.  Then the day goes on and there IT is – smacking you in the face – its back, if it ever really left.

My heart swings back and forth between the need for routine and the urge to run.  In the late stage I often wonder if those that wonder off are looking for a peaceful place to go and therefore get that urge to run or wander.  I think of places where I can escape the mess in my head, the feelings of dread and the need to not upset my Husband and family.  Run as far as you can…………..I do believe that no matter what stage we are in there are so many things we understand but can not communicate so never give up on us.

2f86f9ebe2acc2814a461b7db52533b6WELL, the Holidays are over and despite many breakdowns that Tom had to endure it ended up fairly well.  Do any of us live the Fairy Tale Christmas?  I’d love to!  If you look on Face Book you’d think so, but a few family pictures and “So happy all my family is here” may not be the whole story but I hope so – for them.  As I’ve said before – we never know what is going on inside someone’s home. I shall not dwell because as Tom tells me, “Nothing is going to change unless we do!”  To put Christmas week into a nutshell, we went to church twice at two different churches and it was wonderful.  We went to a Holiday Musical with neighbors and enjoyed dinner, drinks and wonderful conversation after. We also attended an after church Christmas Eve party at Tom’s parent’s house and we ended it with another great meal at my Son and Daughter-in-laws house on Christmas Day.  The kiddies were wild with excitement – made me remember when mine were little – that Christmas Day nap was so well deserved – for ME.

Another great memory – us folks NEED to make and hopefully remember them – was participating in the Colonial Williamsburg Christmas Parade on December 6th.  Tom and I carried the Alzheimer’s banner and we all had a great time.  With perfect weather and being near the front of the parade we were able to watch the rest of the parade to the very end.  I still want to know where Santa went.  This certainly put us in the Holiday spirit.  As I’ve said many times the Alzheimer’s Association, staff and volunteers are most wonderful.  They care for us as much as we care for them.  HAPPY NEW YEAR TO YOU ALL!!

va-vg-your-pictures-2014-williamsburg-christma-014

Other great memories for December were taking Riley (grandson) to the Air and Space Museum.  After a couple of hours I had to sit down and let Tom and Riley explore, fly planes and travel three levels. I slept very well that night. The next day we had Emma (granddaughter) over for to make sock snow people.  I had tired making a couple the week before to make sure I could show her and we had a great time.  These are her snow people:

IMG_1232

Money is always needed for research.  If you think this can not happen to you, think again.  If you think down the road your children and grandchildren can not get Alzheimer’s – think again.  In America at present there are 5.2 million people with Alzheimer’s and it is projected in 2050 there will be 16 million. Think how old your children and grandchildren will be in 2050.  The cost to Medicare and Medicaid is 150 billion now and it will be 800 billion in 2050.  Can you or the government afford these costs?  Baby Boomers – think long and hard about what’s to come.

With this research I am praying for a vaccine to PREVENT ALZHEIMER’S from starting because for me and many others the medications out there now have terrible side effects.  Some people do well but many others can not tolerate them and they may or may not work and even if they do work for a while there is no lasting affect………..there is NO CURE.  THERE IS NO STOPPING IT.

Speaking of medications, the 1st of December I started the first line of treatment – Aricept. I won’t go into all the reasons why I could not tolerate it but it was not pretty. After a week or so off the Aricept I started on the Exelon Patch with hopes of fewer side effects.  I want it to work so I can be involved in a local clinical trial.  Without subjects for these trials progress can not be made.  If I have to suffer through this I’d love to make a difference.  How wonderful would that be for my family?  I’d rather pass down a legacy of being one to change the path of ALZHEIMER’S than to pass down my ALZHEIMER’S.

 Wonderful news to my Walk Team and to all of those who walked in October!!

You did it! Many of you signed our petition to tell Congress to approve the Alzheimer’s Accountability Act and increase funding for Alzheimer’s research. Today, both are signed into law. With your help, we’ve reached another milestone in the fight against Alzheimer’s!

Wishing all of you the best for 2015.  I am always available to talk or email.  I’d love to hear from you.

for blog

Advertisements

THIS CRAZY YEAR WENT BY TOO FAST

flaa8

Oh my goodness, what a crazy November.  I got so sidetracked and “lost” that I totally forgot about writing.  I usually keep a WORD document going with things I’ve done (normal and weird) but when I opened it up there was very little in it.  I said “Oh C****”  –  closed it to do laundry and think about Christmas.

As many of you might know we just returned from a month in Florida – beautiful SUNNY Florida – NOT.  I know vacations can have a few off days but out of 28 we had about 3 days at the beach and about 4-5 short spurts at the pool therefore I will not need to see my Dermatologist until next summer.  I’ve been to many Caribbean Islands where the trade winds blow but nothing to compare to Florida – the wind blew with gusts the WHOLE month.  What’s funny is that in talking to neighbors who also went to inland Florida they experienced the same thing and stated they will never go back in November. Too much time and money to “maybe” get a good few days.  All of the month was not bad as we did a lot of shopping, ate out, drank our fair share of beer and wine, visited a couple of marine museums, went to the Saturday farmer’s market that has the best food to eat, plus crafts and a band……………the best part of our stay.  I actually did not gain any weight – Praise!!

fla4

We took the Amtrak auto train and it was terrible, our friends thought so two and we went on different days. Now I can say that we tried it and won’t again.  I drove us home and we stayed one night in a nice Hampton Inn that we’ve been to before.  We ended up with a room with about 5 spiders (Cathy (my sister) – I’m glad you were not there!!) that I flushed – bonus – we got the room for free.  After returning home to the COLD thinking of spring does sound nice. But for right now, bring on the snow!!

                                                                  Holiday Traditions – “Tis the Season”

baeb15a3324e311a6ba96375e4ece772

When I was a young girl I had one little sister, many cousins & we celebrated ALL holidays together, who needed friends??  We were all together for Thanksgiving, Christmas, Memorial Day, and July 4th, Labor Day, Mother’s Day, Father’s Day and all birthdays & some summer vacations.  It’s sad but that doesn’t happen anymore.  Most family are scattered about, some travel and some just don’t care.  With this season I am missing my parents who were the best parents and Grandparents.  We never missed a Thanksgiving together if physically possible and come Christmas Day my parents were at our house by 6:30 AM drinking coffee & waiting for the kids to get up.  After the kids saw their Santa gifts we all ate breakfast and then started cooking for our Christmas Feast.  When my sister and her kiddies couldn’t come over my folks would leave to do Christmas with them and hopefully they all come back for dinner and drinks.  It wasn’t arranged and it wasn’t talked about – it just was.  This is the way my son was brought up – with his PaPa waiting to play with him. Of course PaPa always got the neatest gifts like the remote control cars.

My main point here is that those of us with early stage Alzheimer’s can remember all the good things in the past and we want that again before we forget who our loved ones are.  We may appear “normal” to you but in our heads we are not – we are losing a little bit every day.  If you are a care partner, care giver or family member please remember these things during the holidays – it will matter to us.  If your loved one is in a facility remember to go visit – you never know what they understand.  Spending time with them is good for you and for them.

I’ve recently read several articles about music therapy and it can be amazing at any stage.  When my Mother was in an Alzheimer’s unit she was quiet and probably bored but the minute the nurse put on some music she perked up and started dancing.  The staff would dance with her – everyone was smiling.  I love my soothing music.  Here are a few things that might help you or someone you know with Alzheimer’s.

How-to of music therapy:

When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function, and coordinate motor movements.

 Early stage—

  •  Go out dancing or dance in the house.
  •  Listen to music that the person liked in the past—whether swing or Sinatra or salsa.  Recognize that perceptual changes can alter the way individuals with dementia hear music.  If they say it sounds horrible, turn it off; it may to them.
  •  Experiment with various types of concerts and venues, giving consideration to endurance and temperament.
  •  Encourage an individual who played an instrument to try it again.
  •  Compile a musical history of favorite recordings, which can be used to help in reminiscence and memory recall.

In closing I’d like to share some of my funny words – the ones that just do not come out right.  I can only laugh.  Please remember if you are talking to someone in any stage of Alzheimer’s be patient when we are talking – words escape us, we can’t find them and while it’s frustrating to you it is more frustrating to us.

  • Fruit machine for my iPad
  • Cottage instead of cabbage
  • Jack hole my name for a manhole cover

Happy Holidays!!

3d8b29feea697a249928ac1c7c0510fa