Friday, November 28, 2014

Making Bracelets

While Mom and Lyn visited, we made sure that any shopping we did was early in the week.  Lyn might have been able to cope with the Black Friday crowds, but neither Mom nor I have any interest in shopping on that day.  Early in the week, Lyn had said she wanted to get a bracelet for one of the employees at day hab who was kind to her.  I asked if she might like to make a bracelet instead.  She liked that idea.  We spent Friday afternoon making jewelry.


Lyn found the small beads and fine wires too small to manage well.  Fortunately, I had various cords and some larger wooden and plastic beads from which she could choose.  She selected what she wanted and strung the beads together.  I just finished the ends for her.  She was very happy with the results and proudly delivered the bracelet to its intended recipient.

I was just glad I had some supplies on hand to entertain her.

Thursday, November 27, 2014

Thanksgiving

Thanksgiving would not be complete without turkey.  Thanksgiving with Lyn would not be complete without her helping pick the carcass after dinner.  She worked hard and did her best.


I don't know if she'll help pick this year's turkey breast clean.  I'll find that out soon.

Thank you for sharing your thoughts and your time with us this past year.  We appreciate your words of support, the virtual hugs we've received and the stories you've shared in the comments or directly with us.  We are honored you take time out of your week to read the posts here at DBD and we are glad to be of any assistance when dementia touches someone in your life.

From my family to yours, we hope today is a day filled with good food and peaceful moments.  May you put your feet up and enjoy a good cup of tea or glass of wine.  May you smile and, at the end of the day, may you feel it was a day well spent.

Wednesday, November 26, 2014

Playtime

Lyn's always had an affinity for dogs.  She doesn't care for cats and the fact that they make her sneeze just adds to her desire to deal with them.  All of our dogs have been so responsive to Lyn throughout her life.  They know she's different and they meet her at the level that she can handle.

My dogs were no exception.  You'd expect my Bernese Mountain Dog Ian to sit and gently accept pets from Lyn and he did.  Berners are gentle giants who embody love.  It is a hairy kind of love that will lean into with all 100+ lbs of snuggle if you even hint at attention.  However, we weren't entirely sure how our American Bulldog, Magda, would do with Lyn.  Mags is much more enthusiastic and can tear through the yard like her tail's on fire when she gets excited.  She'll grab a toy and shake it so hard its ends will knock against her skull.  She's been stung by bees and shakes it off.  She's a level of intense that Ian just doesn't comprehend.  She's also a love.


Mags toned it all down while Lyn was here.  Even a game of tug was more like a slow dance.  Lyn was delighted and lavished both dogs with attention and they reciprocated.

Tuesday, November 25, 2014

Dinner was Her Choice

While Lyn was here, we made sure that the food offered at each meal was something we had confidence she would eat.  There was no curry or paprikas.  Mom would have enjoyed it but Lyn wouldn't have eaten it.  The goal during the week was to cater to her needs and make her as comfortable as possible.  For the most part, we succeeded.


She was happy that we even made spaghetti and garlic bread for her one night.  This picture makes me smile because I know she was happy even though her face looks grim.

If you care for someone with dementia, this is one of the changes that takes a long time to get used to seeing.  We expect that a person's expression, even at rest, should reflect their overall emotional state.  We rely on small visual clues provided by expressions to anticipate how a person will respond to us as we engage with them.  When there's a disconnect between the person's facial expressions and their emotional state, we're left guessing and can guess incorrectly.

I really have to acknowledge how Mom works with Lyn and how she's learned to not rely upon Lyn's facial expressions for an indicator of Lyn's emotions.  The truth is that Lyn doesn't always understand her own emotions anymore.  Tears come just as easily through joy as they do through anxiety or fatigue or any other emotion.  The key is just being willing to go along with whatever is being expressed in the moment.  Mom moves along with Lyn's emotions from moment to moment.  She deserves a medal for that.

Monday, November 24, 2014

A Year Ago

A year ago this week, Lyn and Mom made the journey from New Mexico to Virginia to spend the week with my family.  The week had its challenges, but we were all glad we did it.



Looking back, it is hard to believe it was just a year.  I would have argued that it was two or three years ago until I saw the dates on the pictures which have sat on my desktop ever since.  I've looked at them every time I access my computer.  At some point, I decided to use them for this week's blog.  (That decision was months ago.)

Her face has changed so much in this past year.  Her walk is more of a shuffle than it was even a year ago.  She's more argumentative and stumbles over her words more.  She's quick to cry and struggles with anxiety.  However, she remains essentially Lyn.

She can be drawn out on certain topics and can express excitement or laughter.  She still likes to engage with handsome men, particularly those in uniform.  She likes to help and be considered helpful even if she really is not.  She still loves Nikka with a passion and howls with laughter because of the dog's antics.

She is eagerly anticipating Christmas and a message from Santa.  She assures me that as soon as Santa's website is up, she's going to email him and tell him how good she's been because she put away her clean clothes this week.  Santa will send her a message soon.  The site I've used for the past few years is back up.  I'll do it again for her this year but I'm waiting until December.

I'm happy that magic and excitement is still there for her.


Thursday, November 20, 2014

Evening Anxiety

Earlier this week, Mom took Lyn out to a very early dinner.  They were at the restaurant by 4 pm and had not gone very far from home.  When they got home, they gave me a call and we chatted for a bit. About an hour later, Mom wrote me saying:

You know how someone hugs themselves when cold?  That's how she was sitting in her chair.

I asked if she was cold.  No.
I asked if she was sad that she didn't talk to you.  No.
I asked if she was tired.  No.

Then it dawned on me.  "Are you still a little anxious from being out after dark?"  "Yes and I don't like it."  The tears began.  I got up and hugged her.  I suggested she go take a bath since she's also tired.  Forget about Wheel of Fortune.

Wednesday, November 19, 2014

Jackpot

Somewhere along the way, an organization was established to understand the intersection between intellectual disabilities and dementia.  The organization is the National Task Group on Intellectual Disabilities and Dementia Practices.

Their primary report is called "My Thinker's Not Working."  They also have several committees and if you're interested you can join one.  I've just added my name into the "Friends of the NTG" to get updates about their work.

Their website is full of good information.  Go check it out!


Additional Information:

Dementia in Older Adults with Intellectual Disabilities - March 2009 (PDF)
     One of the Directors of the National Task Group has research cited in this survey.

Monday, November 17, 2014

Biding Time

Yesterday afternoon, Lyn couldn't understand why Mom said we would not Skype.  Mom told her that I was fighting a migraine.  Even when she explained it as "a bad headache," it was clear that she just didn't understand why I wasn't talking with them.  I suspected this was going to be the case and made sure to call them a little later in the afternoon than normal.  

Lyn had decided to wait for my call and worked on sorting beads to bide her time.  


She hadn't touched her beads much in recent months but dug them out about two weeks ago.  When she did, she decided that they had previously been sorted all wrong.  The blue beads should not be put near the purple beads.  She dumped them all out and started sorting them again.  As you can see, she's about halfway through the sort project.  

It is a useful way for her to bide her time.  After our call, she sat back down and picked up where she had left off, a little calmer for having had our conversation.

Thursday, November 13, 2014

Aspiration and Alzheimer's

After reading the obituary for Tommy from Car Talk, I've been thinking about complications from Alzheimer's which lead to death.

As we've discussed several times before, Alzheimer's is a terminal disease which causes the brain to die over an extended period of time.  It prevents the body from healing from disease or injury.  If the body goes long enough, organs can fail and the body may even have difficulty producing its new blood leading to anemia.  If the anemia is severe enough, the individual may need blood transfusions to increase the hemoglobin allowing oxygen to be increased in the body.  (I remember my husband's grandmother received several transfusions before she passed after having Alzheimer's for many years.)  Anemia is interesting because it may be a result of malnutrition which itself may be a result of the body no longer being able to properly absorb nutrients as a result of the Alzheimer's itself.

One of the other complications is aspiration.  When the individual is in the late stages of Alzheimer's they may have difficulty swallowing when eating or drinking.  As a result, food or liquid goes down the wrong pipe and an infection can result if it is not cleared.  The other danger is that the person may die as a result of choking.

We're seeing this a bit with Lyn in the amount of drool she's constantly wiping away.  While we hope she doesn't choke or aspirate, the risk is a reality.

Wednesday, November 12, 2014

A Chunk of Cake

Mom makes a great apple cake.  The cake has a couple of layers of apple slices coated in cinnamon and sugar.  Between the layers is a heavy and super moist cake that is, in my opinion, better than a pound cake.  Perhaps it is the bit of orange juice in the batter that makes the difference.  She bakes it in a tube pan and the cake goes without frosting or even a dusting of powdered sugar.  It just doesn't need it.

She made one yesterday.  She also made a mistake.  She used a bundt pan instead of the tube pan and the cake won't come out cleanly.  Fortunately, Lyn doesn't care and is perfectly content digging out a chunk of cake directly from the pan.


There's more than one way to get some cake and she's got it figured out.

Tuesday, November 11, 2014

Two Weeks = Changes

In the past two weeks, I spent very little time online after work.  I spent the evenings decompressing after my kids went to bed instead of researching Alzheimer's or writing a post here.  I also didn't call Mom very much.  Mom knows the situation here and was patient while I sorted things out to get my youngest the sense of security and additional that are currently needed.  We're sorted here for now and I'm engaged again with Lyn's care and the blog.

When I spoke with Mom and Lyn via Skype before they attended the wedding this weekend, I noticed a couple of changes.

First, the dementia face is way more pronounced with Lyn than it was last month.  You can see it in yesterday's posted picture.  There's no emotional engagement and her facial muscles are slack.  It is this expression that I most closely associate with dementia.  I see it in so many pictures of dementia patients from around the world.  It seems a universal trait of the more advanced stages.  This is the lack of expression that makes people think that the body is just a shell and the person they knew is gone.

The second change is the use of the phrase "You know."  Lyn has those two words on high repeat.  She is using it to fill space as she tries to connect the words she's just said with the though she's struggling to get out.  In one sentence in our call, I counted 8 repeats of "you know" before the sentence was terminated.

Both of these issues have been there for a bit.  However, they either got worse in the last two weeks, my hiatus made them more noticeable to me or both.

Monday, November 10, 2014

A Friend's Wedding

On Saturday, Mom and Lyn attended the wedding of a friend of the family.  They had been looking forward to it since they received the invitation.  It was an intimate affair with the couple's families and a small collection of friends.  I am honored that they thought to include us and regret I was unable to fly out to join them on their day.

Lyn spent a lot of time thinking about what she wanted to wear and eventually decided that the outfit she wore to a wedding a year ago is her go-to wedding attire.

Once they arrived and were seated, Lyn turned to Mom and told her she was "happy we came."  Fortunately, Mom had her camera out, ready to snap a few pictures and was able to capture Lyn's expression.


Don't let the expression fool you.  She really was happy to be there.  She enjoyed herself and was happy to help the couple celebrate their vows.  The small setting and the time of day all worked together to allow Mom and Lyn to participate without Lyn melting down due to anxiety.

We all wish the newly weds a lifetime of happiness together.  We are thrilled they have each other!