Thursday, December 29, 2016

Thinking of Holiday Dangers

The holidays can actually be dangerous time for those with Alzheimer's or another dementia causing disease.

If they live at home, the home may end up decorated for the holidays, introducing new objects such as a Christmas tree which may cause confusion.  Having many guests at once may also increase the person's anxiety and confusion.  The noise level goes up.  It is hard for them to follow one conversation much less multiple.  There is increased activity around them and they can become anxious.

If they live at a nursing home, they may be brought to a relative's home for a visit and not recognize the location.  When an individual with Alzheimer's doesn't recognize their environment, their anxiety can increase and, if the person is already starting to wander, they could feel an undeniable urge to "go home" but may be thinking of the home where they lived in their younger days.  The person doesn't have to be at the relative's home overnight to start wandering.  They could slip out quietly in the confusion of dinner preparations or when guests are arriving or when presents are being opened.

If they travel, traveling without a companion who will stay with them 100% of the time is outright dangerous.  I think of the elderly man I found wandering lost in the Los Angeles airport several years ago or the elderly woman who wandered away from the Reagan National Airport in Washington, DC and died walking distance from the airport.  I'm also thinking of the woman and her great granddaughter who got lost in VA as they drove from New Jersey to North Carolina.  They've been found and are safe.  While the various news stories indicate the lady had no known medical conditions, I'm wondering if dementia is a character in this story too.

Do these risks mean you shouldn't visit with an individual with dementia or have them visit in your home?  Not at all!  There are options available to help mitigate the risks associated with wandering and anxiety.

Some suggestions to consider:

  • Designate people to take shifts watching and serving as the primary care giver for the individual with dementia.  This will allow the effort to be spread across multiple individuals and alleviate the care load from any single individual.  This is, unfortunately, not always possible.  If it is, then consider it.  This may need to include overnight shifts, particularly if the person is prone to wandering.
  • Everyone needs sleep and dementia patients are not always tied into stable sleep cycles that correspond to the nighttime hours.  Technology can be a huge assist here.  Mattress alarms can alert if the person gets out of bed.  Door alarms can alert if they get a door open which should remain closed such as an exterior door.  If you use a door alarm, remember to also alarm the door to the garage.  The door may technically be internal but the person could open the garage door itself and get out that way as well.  Consider GPS trackers to help locate them if they get out and a medical ID to help identify them to anyone they may encounter.
  • Consider a smaller, more low-key visit in their nursing home.  This allows them to stay in their familiar environment and can satisfy your desire to include them in a holiday celebration.  Encourage others who would normally gather at your home to visit to swing by and pay a visit to the nursing home as well.  Spreading out the visit with all of the cousins can allow grandma to enjoy more focused time with each instead of feeling anxious over a busy visit with all at once.
  • Never let anyone who has been diagnosed with dementia or is starting to show the signs of dementia travel independently.  While they may find your insistence an intrusion, it really is about safety.
  • If you're looking at a visit over New Year's or the Fourth of July, consider the impact of the noise from fireworks.  Individuals with dementia often have auditory and visual hallucinations which can be quiet disorienting.  Taking them to see the fireworks may lead to an emergency if they try to escape the booming and flashing lights of the display.  Enjoying a televised viewing in a very well-lit room with the sound down low.  

Wednesday, December 28, 2016

Totally Unacceptable

You know I'm "unappropriated", right?  I've shared with you some of the many ways in which Lyn disapproves of her little sister: the drinking, the marital relations, the questionable life choice of having short hair and my choices in decorations.  What?  I haven't told you how she disapproves of how I decorate my house?  Yeah.  That was new to me too.

When we were Skyping this weekend, my dogs wanted out.  I took my laptop and carried the conversation with me.  When the dogs were ready to come in, I set the laptop on the counter so I could keep talking while helping the dogs dry off and wipe their feet due to the rain.  (Yes, you can teach dogs to wipe their feet.  It helps.)  

Lyn proceeded to tell me I was being unappropriated again and that I know better than that.  I needed to take it down and get rid of it.  It took me a minute to figure out what set her off but a glance over my shoulder revealed the crime against modesty which I was actively committing.  The laptop ended up positioned in such a way that Lyn could see a rather large magnet which sits right in the middle of the freezer door and she was scandalized.

I wasn't sure if Lyn could see that the young woman is clothed.  I picked the magnet off the fridge and brought it to the camera, pointing out that she was dressed.  Lyn countered that she needed to untie the bow to cover her stomach.  Mom suggested that if the bow was untied, her breasts might show.  That comment made Lyn more upset.  Even Mom pointing out that she was wearing a nice big hat didn't mollify her.  

She didn't want my husband or kids to see the magnet and I had to assure her that it was too late.  They've seen this magnet every day for at least 5 years.  Remembering that my husband is often my trump card, I pointed out that he likes the magnet.  He likes it because the model looks like Nigella Lawson.  

Lyn's not happy.  She still thinks I'm unappropriated but she'll accept that my husband likes this magnet.  I would be in SO much more trouble with my sister if it weren't for my husband.  

Tuesday, December 27, 2016

Finally Success

As a gift recipient, Lyn is next to impossible to please.  She may not like the color or texture of something.  She may not know why she doesn't like something which previous indications would lead you to believe she would love.  In previous years, a number of gifts I've given her have been rejected and some even returned to me.  It is frustrating but comes with much laughter.

This year was a successful year for giving gifts to Lyn.  She loved the thermal pajamas we sent her in two different colors.  She liked the print pattern and decided that the fabric was soft enough.

Mom gave her a Star Wars shirt as well as a wind-up Storm Trooper.  She was paling with the Storm Trooper when I spoke to them on the phone.

One of Lyn's team gave her a handmade winter beanie with a hole at the top so she can pull her pony tail through.  The giver let Lyn pick out the colors and Lyn loves the hat.  Hopefully, she'll wear it too.

She was also excited that Santa left her a pack of drawing paper which was something she had told him she wanted.

Despite coming down with a cold and generally feeling quite poorly, Lyn had a good Christmas.

Wednesday, December 21, 2016

Memoriam: Shirley

Today, the Killen family will lay to rest Shirley, wife, mother and grandmother.  Shirley died of Alzheimer's after many years of declining health in which her husband of 60 years cared for her.

Shirley's daughter is my friend and I have been honored to listen and learn about Shirley over the past few years.  Shirley's stage in the disease was more advanced than Lyn's and I've been able to learn from those who go before me.

The path has been long and, at times, very hard.  Shirley was well cared for and deeply loved along the way.  She can rest now.  May her family find comfort in the care they gave her and may her memories bring them smiles in the days to come.

Tuesday, December 20, 2016

Of Proteins and Methylation

It has been a while since I have taken the time to really dive into the current Alzheimer's research.  Let's just say that my non-blog life takes a lot of time.  So, let's try to get caught up a little.  Here are two for today.

DNA methylation is involved with memories going from short-term to long-term storage and may impact relearning.  This experiment was interesting because it involved honeybees and how they learn.  The honeybees have a more simple brain than humans and have a visible response of sticking out their tongues when they remember where a source of food is located.  If you block DNA methylation, you directly impact the bees ability to learn.  DNA methylation also happens in human brains and this study indicates that what happens in our epi-genome may play a role in our development of Alzheimer's.  In other words, we may have a genetic predisposition for developing Alzheimer's but it may take certain environmental triggers to cause it to develop in any one person.

Aquaporin-4 may be another protein for scientists to look at in the quest to find a treatment or cure of Alzheimer's.  Its job is to conduct water through cell membranes and helps the brain flush out proteins such as amyloid and tau from building up in the brain.  If there's too little Aquaporin-4, the brain may not be able to clean itself well.

Monday, December 19, 2016

The Highs and the Lows

Conversations with Lyn are full of highs and lows.

On Sunday for example, she was happy that she got to see Santa again on Saturday.  She had attended the holiday party hosted by one of the support agencies and he "snuck in and snuck back out."  However, she started to get very agitated about one person requiring Mom and I to distract her.

She's as persistent as my eldest child which is to say that she can bulldog a subject when it raises her ire.  She was deliberately tuning Mom out.  I had to pull out the big guns and tell her about how I gave some of the coasters she made for me to a colleague at work.  Her coasters made him happy.  I knew what I was doing and what the consequences would be.  Sometime after Christmas, I anticipate receiving a box with more coasters that I can "give away."  I didn't tell her that I demonstrated the great flying ability her coasters have.

Tuesday, December 13, 2016

Our Helpers

Mom does a lot of baking through the year.  She bakes assorted breads and cookies.

I used to bake until my husband had some significant dietary changes as we tried to sort through some health issues.  Going gluten-free broke me of my baking skills and reintroducing gluten didn't make them reappear.  I cook more than I bake.

Both Mom and I are in the kitchen daily doing something to prepare edibles.  Often, we get offers of help from younger members of our households.

My youngest has started offering to help.  Kiddo waits until I'm wrapping up and about to plate before offering assistance.  The few things that can be passed off, such as setting the table, will be.  My kitchen is small, my assistant is strategic in the offer and so, not much assistance occurs.

Lyn will offer to help mom bake.  She used to help transfer cookies to the cooling rack.  If Mom needed dough formed into balls or balled peanut butter cookie dough mashed with a fork, Lyn could help.  Lyn used to be able to help her retrieve ingredients from around the kitchen.  Now, when Lyn offers to help, she will come and stand at Mom's shoulder or on the other side of the kitchen island from her.  Once there, she indicates she doesn't want to help.  She just watches and critiques instead.  Mom's kitchen is larger and better laid out than mine.  However, her assistant really isn't interested in helping and not much assistance occurs anymore.

We come at it from different angles, but our assistants leave us shaking our heads, often with a smile.

Monday, December 12, 2016

Nutcracker 2016

Mom and Lyn attended the matinee performance of The Nutcracker at the Kimo yesterday for the fifth straight year.  Lyn enjoyed the performance to some degree but her assessment of it was not as enthusiastic as it has been in years past.  She was more interested in the very sparkly ballerina Christmas ornament she purchased at the show.

Lyn indicated she thinks this is the last time she wants to go.  She wasn't happy about going before they left and was generally in a bit of a sour mood.  She hadn't been as excited about the pending show beforehand, even when Mom purchased tickets weeks ago.  Lyn was happy to be out and about but has suggested they find something else to do in the future.

Tuesday, December 6, 2016

Of Trees and Elves

Mom and Lyn are attending Mass early on Sundays instead of on Saturday evenings because Lyn was starting to panic with how dark it was after the late afternoon Mass.  By going so early, they have plenty of time to run errands, do an activity and stop for lunch before coming home for our Skype conversation.  On Sunday, they filled their morning with a visit to the convention center to view the Festival of Trees.

The trees are an annual event and one which Lyn enjoys attending.  It is low key but filled with plenty of pretty sparkle to entertain her.  This year, she was excited about the tree inspired by the Minions from the Despicable Me movies.  It was simple, bright and cheery.

She was confused by the tree inspired by a wedding cake.

I suspect the tulle and the monochromatic approach doesn't give her enough contrast to appreciate it.  Remember, vision fails with Alzheimer's.

One of the other reasons she likes going, possibly the main reason really, is that Santa will be there in person.  The advertisements for the event announce he will be in attendance and she knows she'll be able to get a hug in.

She was nearly bouncing with her excitement in telling me about seeing Santa.  She told him about the blog and he promised to read it.  He told her to put her arm around him and, of course, she did!

Honestly, I wonder sometimes what the actors are able to piece together when they encounter someone like Lyn.  Like Cinderella in Disney, his job is to make someone happy and he never knows just what will happen.

To all the Santas who have made her and countless others smile over the years, thank you.  Your rosy cheeks, snowy beards, and patient, cheerful disposition have kept the very large Elf alive for her.  You're a crucial part of her Christmas and have never failed to bring the magic.

Monday, December 5, 2016

Processing Santa

Lyn viewed her video message from Santa several times over the past few days and loves it.  Upon watching it the first time, she immediately wanted to call our Uncle in Tennessee to tell him about it.  He lives just about 10 miles from Gatlinburg and has been dealing with the impact of the wild fires there.  He was happy to have a call which was so upbeat and excited.

Lyn no longer realizes that I am behind the videos.  To her, they really are pure magic now.  Last year, she was still in on the game, even saying " KNOW!  You sent it!"  This year, there was no connection between her receipt of the video any anything I may have done.  In Lyn's reality, Santa really did send her the message.  He really looked for her file and his team made the decision that she was on the Nice list.

She wondered how he got the picture of her and the picture with me.  Mom assured Lyn it was "Christmas magic" and she agreed with "Must be!"  She also has no firm grasp on time or how quickly things can be shared electronically.

I have the option of the outcome being Naughty or Nice.  I cannot imagine how much it would hurt her to have Santa declare that she was on the Naughty list.  If she was able to process a joke and really understand that I was just playing, then maybe.  A Naughty list video could be done for Mom and she would get it.  Lyn would just be crushed.  There's no fun to be had in that which is why last week's post indicated that Santa had made a wise decision.

Thursday, December 1, 2016

Santa's Wise Choice

The Portable North Pole has come through again.  Lyn's annual message is ready for her to view.

This is part of the reason for the photo with Santa that I had done.

Mom showed Lyn yesterday's blog.  Her only reaction was to comment that it was a nice picture before wandering off.  Ah well... maybe she'll like it more when she gets the print out.  At least I'm pretty sure she's going to be excited about the video.