Someone stop the music. My feet hurt!

You know when you've danced to long and your feet just hurt so bad? 
That's how I feel sometimes.  I'm sure Mom feels that way too.

When Mom came to us, Alzheimer's grip on her was tight.  The steps to her dance were difficult but still doable.
Come evening, we had time to sit back and laugh at the retelling of the days events.  I'm not sure Mom ever connected that it was herself who had executed those amusing dance steps but she enjoyed the story non the less.

One of those events was when she came downstairs in the morning with all her clothes on.  Now when I say all, I mean every single piece of clothing to be found in her possession!
It was still cool outside and I thought she would layer her clothes due to the chill.  However, I soon learned that this was just another step in Mom's dance with Alzheimer's.  In fact, this is a very familiar step that many Alzheimer's victims are plagued with (or should I say, the caregivers are plagued with).
As I said, she had all her clothes on.  she looked like a football player dressed in full pads and their grandmas outfit.
When I first saw her I couldn't figure out why she looked so heavy and then I put my hand on her back to guide her into the kitchen and felt all the padding!  I instead, guided her back up the stairs to change.  As we climbed the stairs, I noticed how difficult it was for her.  It was the constriction of.....are you ready for this?

6 pair of pants (the smallest were on the outside and how she did that I will never know), 3 shirts, 2 sweaters, 3 pair of socks, 2 depends and her coat!
I kept pealing off layers and she kept telling me that she didn't do it.  Someone else did that to her.
Later that evening when we were all talking about it, she believed I was telling a funny story about someone else.  Mom said, "I didn't do that!" and just laughed.

There was also the time when I was standing at the kitchen sink and Mom went into the bathroom.  As she came back into the kitchen I turned and went to get something out of the fridge. She seemed perfectly normal. Mom walked over to the sink to wash her hands.  As I turned around, I noticed something amiss.  Mom stood at the sink in her coat, sleeves pushed up to her elbows, her shoes and her socks.  She had left her pants in the bathroom!  Fortunately for us, her coat is a bit on the long side.  It made a nice "mini-dress".
As we were re-dressing her, she said, "Oh I didn't do this, someone took them off me".


"Someone" is also responsible for untold amounts of paper towels and toilet paper, toys, headphones, ear rings, ear gauges (the grandson has holes in his earlobes...big ones!), q-tips, fruit, french fries and various articles of clothing, being stuck in her pockets.  Most of it, I catch, but the occasional paper towel will slip by unnoticed until the laundry is done!  I have learned a few tricks to keep "Soemone" at bay most of the time.

My husband has decided he would like to have "someone" start hanging out with him.  He thought it was a great excuse for just about anything!!!

Someone....the silent dance partner...
He will dance with you so long your feet will hurt. :)

Now for my soapbox (They have those at dances?)

If revenge is a dish best served cold, then Alzheimer's is a dish best served at a pot-luck.
Yea, I guess that is a little random but there is a point there.  I promise.

When I was introduced to this disease, like many others, I thought it was terrible and sad.  Not only for the patient but for the family as well.  It is.
When I first heard of this disease I thought it was something I might have to deal with some way, some day.  I am.
When I first began this personal dance with Alzheimer's I never thought I would feel as if I am dealing with this alone.  I do.

I have an amazing family and great friends to support me and yet, there are still times when I think they just don't understand or even worse, just don't care.
I know that isn't the reality of it, but it is how I occasionally feel.

Here is the soapbox part to this entry.
If you know a person who is caring for a loved one with Alzheimer's or severe Dementia, call them.  Take a cup of coffee over and go see them.  Better yet, grab a few chocolate bars and go see them. 
There are times when they feel as isolated and hopeless as the patient does. 
This is not a disease you can "deal with" on your own.  You MUST have someone to talk to, to keep you sane, to share with, pray with and to cry with.

Alzheimer's is not a dance you go into alone.  There are the brave and strong few who can and do, but just like your first dance in Jr. High, it is so much easier if you go with friends.

A little night music

Last night we had the joy and privileged of spending some time with dear friends.
They had come over to help my husband with a little project earlier that morning.  During that time we were invited to go out for an evening cruse and BBQ on their boat.  After a little discussion we were encouraged to bring Mom and join them.  I was a little concerned about having her "stuck" on a boat for so long.  This was a new dance for Shelarose and I was worried that she would be overwhelmed by it all.

I was pleasantly surprised at how calm she was most of our journey.  We enjoyed a beautiful late afternoon watching the sights and boats twirl past us like ballroom dancers.  Each looking splendid in the last stunning rays of sunlight and trying to look just a little more spectacular than the last, yet still seeming to be united on this waterfront dance.  It was quite beautiful and Mom just quietly soaked it all in.

We arrived at our destination and BBQ-ed, watched the kids play in the skiff and watched a full moon rise over the water and the sky turn the most beautiful shade of lavender. As night fell around us, the lights of other boats and the city began to twinkle, not to be outdone by the starry array displayed above us.

This was when I noticed Mom had changed. Something in her tune was different.  She all of the sudden became very animated and joined in the dance.  She was like that young girl at her first dance who sat at the wall, waiting for the right song.  She sat patiently, waiting, waiting.  Then Shelarose heard it.  The song that moved her to join the rest of us.  It was perhaps a different song than ours but still able to move her to join the dance.

Mom started to view everything around her with wonder.  I watched her eyes light up as she sat in awe at the full moon and asked us "do you see him?  You can see his face".  She viewed the Space Needle lit up in it's evening finery as if she had never seen it before.  It was all so amazing to her!
She had, a bit earlier, began to wave.  We had, earlier in the evening, when it was light, waved to the occasional boat that passed us.  Mom seemed to be waving at no one.  It was dark. It was then that I realized, she wasn't waiving at others, she was directing her own tune. A little night music.

Mom continued to lead her private orchestra the entire way home.  You could see the joy and pleasure on her face.  As we arrived back at the dock her music stopped and it was time to end the dance for the night.  Her disease had started to take control and agitation began to creep in. 

Once safely home and in bed, she was quiet and calm.  Surely she dreamed of the evenings dance and the gift of her own night music.

And our dance has begun.

Mom decided that 5:45 am was a good time to get up today.  Had it still been dark she would not have been so ready for today's dance.  Darn that daylight savings time!
So far her mood is good.  It's a happy dance for now.  Mornings seem to be her better time of the day.  She is at her most challenging for me to deal with in the morning and at night but her mood is generally chipper earlier in the day.

We have definitely had adventures in the morning hours.  You know, it's not always the dance that is the big deal.  Sometimes it's the outfit and the accessories that count.

When Mom first joined out home she didn't have a lot of clothes with her.  What she had she would wear all at the same time!  She also didn't have a purse.  What good woman would go to any dance without a purse to hold her lipstick, keys and a little cash?  The music that morning took us to a local "everything" store where we went in search of a purse. 
Now you must understand, Mom was married to Dad for over 50 years prior to Dad passing away and they had four sons.  Mom , understandably, has a preference for men.  We had not been in that store more than three minutes when a very nice, albeit unsuspecting, young man catches Mom's eye and asks her how she is and if she is finding everything. To Mom, this man asked her if she would like to dance with him for the rest of the day!  She held out her hand to shake his, without the poor soul even knowing she had no intention of ever letting go.  As she vigorously shook his had and squeezed tighter and tighter, the poor fellows eyes got wider and wider!  His comment was, "well, you sure are strong!".  That thrilled Shelarose to no end!  She started dragging the unsuspecting and down right frightened, sales employee with us on our mission to find a purse.  After I pried her hand from his and explained the situation to him, the "deer in headlights" look left his face and understanding dawned.  We bid him farewell and in her own way Mom thanked him for the dance.

How often do we take the time, even in our fright, to be kind to someone we don't know?  Yea, yea...I know that was this young man's job, but really...he made her day.

I should have done this sooner!

So I'm told I should have started this much sooner.  Go figure!  I didn't have time.  I was to busy dancing with Shelarose.
This dance started about five months ago.  The music changes daily but some days the dance seems to go on forever!

I'm Kerie and Shelarose is my mother-in-law. Mom is in the later stages of Alzheimer's disease...or dementia, depending on who you ask.
Due to family "issues" mom is now living with us and I am her primary care provider.
This is not a party I was wishing to be invited to but, here I am.
Most days are "doable" with only a few bruised toes, but other days..........

Do you ever feel like you are the only one hearing a particular tune and everyone else is dancing to another?
I imagine that is how Shelarose feels most days.  I understand that, because I am on the opposite side of the room wondering why she doesn't hear my music.
I too feel very alone and frustrated.  Surely my family will help.  They try but they too have their own dance to dance and most of the time that dance is spinning away from Shelarose and I.

Alzheimer's is an insidious disease!  It robs one of their ability to communicate clearly, remember things held dear. It takes away independence, choice and dignity.  I would not wish this on anyone.

In spite of the hardships there are moments of levity.  I will endeavor to not only tell you of my difficulties, though they be many, but also regale you with the absurdities that dancing with Shelarose brings to my life, and they too are many.

For now I will rest.  My dance partner is tucked safely in her bed.  Tomorrow the music will start early and I will try to be ready.

Let the music begin!