Thursday, March 30, 2017

Holy Disco Has A Home

Do you remember the purple and silver cross Lyn made me?  I've been calling it "Holy Disco."  

Lyn was mad at me because I hadn't hung it on my wall the last time she asked about it.  She was mad at the picture I posted of it because the cross was clearly resting on a small table.  She's forgotten all about the cross and my lack of compliance.  This is a good thing because Holy Disco has a new home and is on it's way back to New Mexico.

A friend of the family mentioned over bunch with Mom that she was catching up with the blog and loved the cross.  She indicated that if I ever decided to get rid of it, she would love to have it.  

Say no more!

We've all agreed to say nothing about this arrangement to Lyn.  There's no need to make her angry again.  I'll just quietly mail it off to its new owner.  I'm delighted to send this piece to someone who will appreciate it more than I.  

Tuesday, March 28, 2017

Alzheimer's Advocacy Forum

This week, the Alzheimer's Association here in the US is hosting their annual Advocacy Forum in Washington DC.  They've organized a three day conference which culminates in the attendees visiting their Representatives and Senators to advocate for increased funding for Alzheimer's.

I lost track of the conference this year and didn't register.  However, if you're sitting this one out with me, you can still participate through their Thunderclap and by sending a video message to your Representatives and Senators.

Monday, March 27, 2017

A Note on Comments

I receive notification of every comment posted here and try to respond in a timely manner.  For posts that are more than a week old, I have the blog settings hold those comments out of public view and awaiting moderation.  This is a deliberate choice.

Comments which come in within the week of a post tend to be focused on the post's content.  I absolutely welcome these and enjoy the dialogue which may result.  The feedback you provide gives me insight into what you feel is helpful or lets me know when a post speaks to you.

Comments which come long after the fact tend to fall into two categories.  First, there are the comments which express appreciation for the post.  Second, there are the comments which purport to have a cure for dementia and link out to a sketchy site.  The first will be approved for your viewing.  The second will be deleted after I check out the claims and the links provided.

While I was away, a comment came in on a post from 2013.  It had quite the claim of a miracle cure and the contact information for the "healer" lead to some pretty questionable material.  The comment was deleted.  In my searching, I found the exact same comment had been posted to other sites.  Someone was spamming a number of unrelated sites with the same malarkey.

I hope that one day, there will be a real cure or a viable prevention which can give us hope.  In the meantime, I do feel an obligation to screen the comments.

Monday, March 20, 2017

Annual Conference Down Time

It's that time of year when I disappear due to my annual corporate conference.  By the time you read this, I will have already been at the conference for at least three days.  I will barely have time to check on my own family much less spend time writing.

I'll be back with new posts next week (March 27).

Wednesday, March 15, 2017

That Look

There is a look which is distinctive to dementia.  The individual has an emptiness to their eyes.  The body is there.  The eyes see.  The brain is not engaged or responsive.  This is not the same look you see when someone is in a quiet or meditative state.  It is not the look of someone who is resting due to illness.  This is an absence.  This is a lack of processing or connection.

This is the look the man had in the airport three years ago when I found him wandering and asked an airport employee to help him.

This is the look the woman sitting across from Mom and Lyn during Sunday's lunch had even though she opened the menu and appeared to look at it.  Her son suggested a meal and she only nodded in response, never speaking through their meal.

This is the look of an advanced stage of the dementia causing disease.

This is the look on Lyn's face with increasing frequency.

Tuesday, March 14, 2017

A Switch is Thrown

On Saturday, Lyn was so full of herself.  On Sunday, she continued bragging about her painting to the minister and some of the congregants at church.  The minister exclaimed over the lovely cross Lyn painted for her and got a chuckle over Lyn's attitude.

After church, Mom and Lyn went out to lunch and Mom could see Lyn starting to deflate while eating.  By the time they got home, the switch had been thrown.  Lyn collapsed into sobs, repeating "I hate myself" over and over.  She was able to verbalize that her brain just doesn't work and she hates herself because of it.  She knew she wanted to do something as they walked in but she lost the thought between the car and the house and could not retrieve it at all.

Mom tried to comfort her but it took quite a while.  When the sobs subsided, Lyn was spent and agreed to a nap.  She only slept for a half hour.  Upon waking she was still off.  Her eyes were dull and vacant.  She didn't understand what Mom tried to tell her.  Nikka kept in constant contact with Lyn, trying to ease her discomfort.

Monday, March 13, 2017

No Mucks

Last week, Lyn finished a painting of the full moon rising over some trees in a starry sky.  I offered to buy it because I think it is lovely.

In the back and forth, Lyn accepted my price.  When I asked if they could just hold onto the painting and let me pick it up this summer when I visit, Lyn got upset.  "But, I need the money now!"  It struck me as funny because it sounded like she was trying to make rent or something.  She has no such concern.  She just likes getting money (who doesn't?) and doesn't want to wait for it.

A few minutes later, I found myself on camera in a Skype call, assuring her that I was good for the money and that I wouldn't make her wait.  I went to my purse, pulled out the cash she wants and showed it to her.  I pulled out a card and showed her the cash going into the card.  I showed her the envelope and let her watch me addressing and putting a stamp on it.  It was like some poorly executed bit in a movie where the gambler assures the mob guys he's going to have the funds ready before someone comes to break some legs.

Mom was laughing over Lyn's impatience for the cash.  Lyn's gotten a bit of a swollen head, announcing to people that she's "going all over town to sell paintings."  She's surprisingly good, all things considered and has received a lot of praise for it recently.  She has even tried to explain her techniques to me.  She asked if I knew how she painted the stars and didn't wait for me to finish my answer before telling me she uses the end of the paint brush handle.

"Humility is running amuck." Mom chuckled.

"No!"  Lyn immediately retorted.  "Let me say this.  First!  No mucks!  We have no mucks running here.  No.  There is no running mucks allowed."

Mom asked me if I have humility running amuck at my house.  Lyn looked concerned.  I assured her there was no muck running through my house either.

The card goes int the mail today.

Tuesday, March 7, 2017

Sunday Night Television

On Sunday, Mom, Lyn and I had our Skype conversation.  Lyn was very excited to show me the new socks she bought.  They were black and grey and said Star Wars.  She was also wearing her black and grey Star Wars shirt.

She loves Star Wars and thinks we're idiots for not knowing how much she's loved Star Wars her whole life.

Later, Mom sent me an email that read:

"She wanted to watch tv but needed me to see what's on.  Scrolling down the listings, I joked about Star Wars.

She became animated.  "The real one?  Like here?"  She tapped her shirt.  "Yes, it's the real one; The Empire Strikes Back."

She's sitting watching it and very happy.

OMG, I would NEVER thave thought she was such a fan.  What is Alheimer's doing to her brain?????????  lol"

Monday, March 6, 2017

There is Love

Over the weekend, I received an envelope in the mail from my sister.  She had made two "cards" and asked Mom to send them to me.  Each is a piece of unfolded construction paper adorned with foam letter stickers and some stamps.  The letters have been arranged to spell out our names.

These cards are how Lyn tells me she loves us.

She's long made cards when we weren't feeling well or when we were celebrating something special such as birthdays, anniversaries or our adoption.  The cards used to include a picture she drew or a sentence she wrote.  She used to sign "Love" before writing her name.  The cards used to be folded and were sometimes multiple pages bound together as a booklet containing her well wishes for us.

The complexity is gone now.  The cards are flat sheets.  There are no sentences.  There is drawing, binding nor hand-written "love."  There is still love.  The love is there in the decision to make something for someone.  The love is there with each letter she's asked Mom to carefully spell out for her.  There is love with the few stamps which circle our names.  There is love in the request that the cards be specifically mailed on their own and not tucked into a package of other items being sent to us.

She's lost so many skills but she still has the capacity to show love.

Wednesday, March 1, 2017

Confusion Causes Sadness

On Tuesday, Lyn struggled with waking versus sleeping.

Upon getting home at 1:30, she was exhausted but refused a nap.  By 4pm she was struggling to stay awake.  At 5, she was crawling into bed.  At 6pm, she was awake, wanting to get dressed for today.

Mom opened the curtain over the sliding door so that Lyn could see that it was night and not morning.  Lyn sat on the couch, confused and increasingly sad.  She told Mom she thought it was supposed to be daytime.

Just before 7pm, she went back to bed.

She's excited to spend time today with her community access care provider.  We hope that excitement is what caused her disruption today.

Unfortunately, this is happening more frequently and it may become a serious concern.  We have to make sure she's safe through the night.  We also have to make sure that both Lyn and Mom get enough sleep.  There may become a point where we have to bring in a night-time attendant to help.