Wednesday, January 27, 2016

Jealousy

Lyn loves personalized attention and has a jealous streak.  Both came into play last week.

There is a client at day hab who disembarks from the bus backwards.  The staff work with the client and more than one, particularly the men, are right at hand to guide and help the client during the exiting process.  Sometimes, the staff member will put a hand on a back to provide gentle reassurance while the client is on the bus's stairs.  This makes Lyn jealous.  Jealousy makes her angry.

The above scenario happened on Thursday or Friday and she was still angry about it when we spoke over the weekend.  She was able to tell me that she was angry and it was because of something the staff did.  It took a while for her to put her thoughts together but Lyn was clear that she didn't like what happened because it didn't happen to her.  She wasn't happy because she felt she should get that level of help too.

I was actually glad to hear her say it and see that she was able to acknowledge that she wants personalized attention.  Expressing herself is an increasingly difficult thing to do.  However, Mom and I still need to help redirect her emotions.  In this case, we pointed out that Lyn is capable of getting off the bus without help and the other client is not.  We pointed out that all of us want Lyn to do as much for herself as possible because that will help her be as independent as possible for as long as possible.

Lyn made a disappointed face and said "Well..." which was short for "Well, I may not be able to argue but it isn't what I want."

Tuesday, January 26, 2016

Shopping Pleasure

Lyn loves shopping and a gift certificate is a welcome gift to her.  She received one or two for Christmas and again for her birthday.  This weekend, Mom took her to the store to use one of her gift certificates.




She was very pleased.

Monday, January 25, 2016

Blizzard Worries

My family and I weathered the blizzard this weekend known as Snowzilla.  We received about 28 inches of snow.  The national news showed footage of empty store shelves from a store in the next county over.  This image sent Lyn into a state of worry over us.  She also knew we are having issues with our heat system and will have to replace it soon.  (It is old and long past time for replacement.)  The heat issue added to her worries.

We had our Skype conversation on Saturday during the blizzard.  Lyn was adamant about a few things.  She wanted to check on our food stores and our heat.  She also had a few things to say about God.

My ability to speak with her on Skype is not limited to one location in the house and I've been known to take the conversation into the kitchen if I need to get dinner cooking or outside if we want to show them something in the garden.  To ease Lyn's worry for us, I walked her into the kitchen and opened the pantry, freezer and fridge for her to peer into.  This assured her we had plenty of food to get us through the storm.  Mom even pointed out the milk and eggs which were in the fridge.

While I didn't show Lyn the thermostat, she accepted my assurances that our heat was working and we are comfortable.  I wasn't wearing gloves, a scarf or beanie and I think she believed me.

As for her worries about God, I think the topic that triggered this train of thought was when I mentioned that a local Bishop had absolved congregants from their obligation to attend Mass this weekend in light of the blizzard.  Lyn was not pleased with this statement from the Bishop.  She felt he was giving people permission to stop going to church and start ignoring God.  Her message went from a general "some people" to a specific "you" rather quickly and I had to keep my hand over my mouth so she couldn't see me suppressing a giggle.  "God sees everything and he knows what you're doing.  You need to stop ignoring Him and go to church."  Mom interjected with "She's not repeating anything I've told her.  I would get onto you directly."  I had to laugh and assured Mom I knew this wasn't at her behest.  I promised Lyn I would think about it.  Explaining my position to Lyn or how I came to where I am today would not be a useful conversation.  She would neither understand nor accept my beliefs.  At least she doesn't believe that an atheist is a devil worshipper like the missionaries who recently approached me in the grocery store parking lot.

Surprisingly, Lyn remembered that she wanted me to advise my husband that we were risking arrest by having sex.  She asked if I had told him what she said but she was embarrassed to bring up the topic.  It was pretty funny.  I told her that I had conveyed her message to him and that we would make sure we were careful.  When she realized I wasn't promising to stop, she started to tell me that the police have very good ears and can hear us.  Mom and I convinced her the blizzard was keeping the police too busy to hear anything at my house this weekend.  

Thursday, January 21, 2016

Of Good Days and Bad Days


As we noted yesterday, Monday was a bad day for Lyn's symptoms.  Tuesday was a good day.  This is a common issue with Alzheimer's patients and it is not a well understood aspect of the disease.  I wish I could say the bad days were because of this process in the brain and the good days were because of that process in the brain.  I honestly haven't been able to find any study or explanation for it.  I've seen several pieces in which people commiserate and suggest charting the days to look for triggers so you can adjust.  Some theorize that the bad days are more evident when the patient has not had a run of consistent sleep.  We haven't noticed a particular pattern with Lyn yet.

We've long heard about these good days and bad days.  We've seen it in action before but not to the extend that Monday showed us.  In February, Lyn goes for a new neuropsych evaluation and we actually anticipate that she's going to be on and having some good days.  She'll feel she needs to perform and may be able to cover quite a bit because she'll be working with someone new and she'll be getting one-on-one attention.  

Several of us who are involved with her care have been asked to provide a written assessment of the changes we've seen.  I think this is a good thing because it will allow the clinician to get insight into what others who are more familiar with Lyn perceive of her behaviors and symptoms.  The Alzheimer's Association writes in an article titled "Monitoring Progress",  "...since Alzheimer's patients regularly have 'good days' and 'bad days,' a clinician's evaluation in one brief visit may not be as valuable or reliable as a caregiver's report of the patient's condition over several days or weeks."

It really won't matter if she's having a good day or a bad day when she goes for the evaluation.  It is spread over three mornings.  It is a long process and previously she's come home exhausted from it.  I suspect the same thing will happen.  She won't be able to be on show for all three days.  I anticipate that the clinician will see many of Lyn's symptoms and will be able to combine that with the write ups we provide.

Wednesday, January 20, 2016

I'm Lost

On Monday, after having Mom help her get her bra on, Lyn stepped out of Mom's room and walked into the kitchen.  Mom heard her say something but didn't understand her.  Mom stepped out of her room to ask Lyn to repeat what she said.  Lyn was looking up and around, trying to take in the room about her.  She looked confused and kind of blank.  Nikka knew she was off and leaned into her.

"I'm lost."  Mom asked if she wanted to eat.  Lyn said she wasn't hungry.  Mom asked if she needed to take her medicine.  Lyn agreed that she needed to.  Lyn asked if she needed to take her vitamin and Mom agreed that she needed to take it.  Mom told Lyn that she needed to finish getting dressed because her knees were getting cold.  Lyn laughed and followed Mom into her room again.

Lyn's shadowing has increased to the point that Lyn's nearly in physical contact at all times.

While Mom finished getting dressed, Lyn said "I need help."  Mom asked what she needed help with and Lyn asked if her shirt needed to be tucked into her pants.  Lyn lifted her sweatshirt and exposed her undershirt and then just stopped.  She didn't know how to tuck in her shirt and Mom ended up having to help her.

Mom prompted Lyn that she needed to brush her teeth and Lyn stated she didn't know how to use the toothbrush.  Mom said "Ok.  Let's go take a look."  Lyn indicated she needed help with her teeth.  By the time they got to the bathroom, Lyn didn't remember that Mom was going to help her.  "No!  I can do it but that toothbrush doesn't work."  Mom suggested that sometimes you have to push the button a little harder.  She told Lyn to sit and open her mouth.  Lyn opened up and allowed Mom to brush her teeth despite her previous objection.  When she was done, Mom stepped back and asked Lyn to rinse the sink.  Lyn couldn't.

The bathroom sink has been increasingly needing attention.  Mom usually asks Lyn to clean her sink every two days.  Mom has noticed that despite the attempts, it is no longer clean.  Mom has also noticed that she frequently has to send Lyn back to brush her teeth a second time.  We think that it will no longer be a "Go brush your teeth" approach but a "Let's go brush your teeth."

The staff at day hab ended up sending Mom and email expressing their concern over Lyn's off day.

On Tuesday, Lyn didn't have these issues and was able to brush her own teeth.


Tuesday, January 19, 2016

Birthday Celebration

She had a good birthday!


She asked Mom to make her a German Chocolate cake and a few guests came to help her celebrate.  She had calmed down from our sex talk before they arrived and was able to enjoy the attention.

Monday, January 18, 2016

No Such Thing as Safe Sex

Over the weekend, our uncle called to speak with Mom.  They chat regularly and she frequently shares jokes with him.  This time, she had a joke with the word "sex" in it.  Lyn was appalled.  She was standing at Mom's shoulder for the entirety of the call and started elbowing her when the word was said.  "That's NOT appropriated!" she hissed.

When we spoke via Skype, Lyn was eager to tell me about it.  She wanted me to commiserate with her about Mom's appalling behavior.  I asked Lyn to tell me the joke so I could understand what was upsetting about it.  Lyn refused to tell me because she knew she would get in trouble.  So, Mom told me and we chuckled over it.  It was cute but not at all scandalous.  Lyn was not pleased with hearing the joke again and started back onto the "not appropriated" chant.  So, I decided to throw a wrench into her mental works by announcing "You know... I have sex."

Needle on the record.

Lyn stopped to stare at me for a long heart beat and then let loose.  "You should not!  It is not good for you!  You will get in trouble!  The police will come and arrest you!  I know!"  I think I started laughing before she finished saying that sex is not good for me.  She was so mad that she was shaking.  She proceeded to describe in detail how the police know these things and they'll come to arrest me and frisk us.  She mimed being patted down.  She felt it very urgent that I end the call and go tell my husband that we "can't do that anymore!"  She refused to say "sex" and insisted that I use the hand motions she was demonstrating.

I promised to make sure the curtains were closed the next time we engaged in such illegal activities.  She was not eased.  She was insisting that I stop and tell my husband he too has to stop or the police will know.

Mom and I had to wipe tears from our faces.  I theorized that perhaps Lyn has watched a few too many episodes of Cops.  When I told her that it was OK and legal because we're married, she was again unconvinced and was ready for a second round of her diatribe.  My lungs couldn't take it and I tried to get her onto another topic by promising that I would most definitely tell my husband of her concerns.

Unfortunately, I'm not interested in mending my ways.  We've decided we'll take our chances with the police.

As for Lyn, she again proves she would have been quite a leader in the Temperance movement had she been born in a different era.

Thursday, January 14, 2016

Happy Birthday

Today is her birthday!

She's 45 now and cake shall be had.



I'm not the only one who wants to wish her a Happy Birthday though.  The Jolly Elf also sends his wishes to her today.

Happy birthday to my dear sister!!

Wednesday, January 13, 2016

Blood Work


Mom's taking Lyn for blood work this morning.  It is just part of her annual check up.  Lyn's not to eat before the appointment.  This isn't an issue because she often chooses to not eat in the morning.  Mom reminded Lyn of this and Lyn announced "Well, I'm going to be hungry."  She's angling for a breakfast burrito.

Mom will suggest to the phlebotomist that best results will be had if a butterfly needle is used and that the white medical tape should be avoided.  Lyn's skin very quickly reacts to the white medical tape.  Hopefully, they'll have a bandaid or allow her to not use one.  

Lyn's not thrilled with the appointment but will be cooperative.  

Tuesday, January 12, 2016

Microglia

In July, we learned that microglia can stop working and that they may be implicated in Alzheimer's.  We don't often hear the word "microglia" in everyday parlance.  So, a quick refresher may be in order.  Microglia are an immune cell resident in the brain and spinal column.  They are macrophages which surround and consume cellular trash such as dead cells, pathogens and anything that doesn't register as healthy cells that belong there.  Some macrophages can increase inflammation and others have anti-inflammation properties. Microglia decrease inflammation.

The study in July indicated that microglia may stop working and allow for a build up of detritus in the Central Nervous System which then allowed for Amyloid Beta to reach critical levels.  The theory which resulted is that by blocking a receptor called EP2, the microglia could be bumped back into work.

A new study from a different lab has been released.  This study examined post-mortem human brains and found an increase in the microglia count in the brains which had Alzheimer's.  More microglia would indicate that the bodies were trying to clear the debris and trying to reduce the inflammation.  The resulting theory is that by blocking a different receptor, CSF1R, fewer microglia will be produced and there will be an improvement in memory and cognition.

Both studies hope to find a drug which will help reduce Alzheimer's symptoms.  The first study looked at genetically engineered mice and the second looked at, I presume, human brains.  However, it did use a drug which prevented the production of the receptor in mice brains as well.

Maybe I'm wrong but these two studies seem contradictory.  Increase microglia vs decrease microglia.  Either way, their results with mice need to be proven in humans before we can determine if either are correct.

Monday, January 11, 2016

A Quick Visit

Over the weekend, my brother called to let Mom know he was hauling a load into town for work and inquired if Mom and Lyn would be available for a visit even though it was short notice.  His time in town would allow them to meet up for a late lunch/very early dinner.  It didn't matter to him what time they ate because it was an opportunity for him to get a chile fix.

While at the restaurant, they realized that Lyn would not join in the conversation.  She stayed focused on her food despite repeated attempts from both my brother and Mom to get her engaged.  When their plates were empty, she was already showing that her Sundowner's was in play by her nervous movements, repeated glances out the window and statements that she was done.  Mom asked to take their picture but could only get one snap (just as my brother blinked).  Lyn would not stand still for a second picture though she did try to smile.



Afterwards, they returned to the house for a bit.  Once there, Lyn was happy and chatty.  Mom thinks it was because she was home, in her safe environment and had Nikka with her.  Nikki was glad for his visit too because it meant an extra pair of hands for rubs.  The playtime with Nikka settled Lyn enough that she was calm when they had to leave the house again to take him back to his truck.

We Skyped the day he called to let them know he was to be in town.  She was clearly excited about the pending visit because it was the first thing she wanted me to know when the conversation started.




Thursday, January 7, 2016

Jan 2016 Team Meeting

The team who oversee Lyn's care held their monthly meeting yesterday.

The modifications have been made to Lyn's Individual Service Plan to give Lyn more one-on-one community access time.  The changes have been submitted to the State and the team is waiting for the State's approval of the changes to the ISP and its associated budget before they can implement the changes.  It is a waiting game at this point.

Lyn's behavioral and physical therapists did not attend the meeting.  As a result, the team wasn't able to fully discuss Lyn's decreasing motivation to do anything.  

So, not much has changed this month and we'll see what next month brings.

Wednesday, January 6, 2016

Emotional Memories


I've been binge watching the first season of Transparent this week and one of the characters is an elderly man with aphasia, a tendency to wander and decreasing abilities to care to his most basic needs such as waste elimination.  While it is never stated in the show that the character has Alzheimer's or another form of dementia, much of what I've watched strongly reminds me of the disease.

There are some very uncomfortable moments in the show, including one where the man's wife describes her desperation and need to be "done" with his care.  She talks sobs about cleaning him up each day and about people not visiting or helping.  When one of her kids comments "I call all the time," she expresses such frustration that she doesn't want him to call, she wants help.

There's an earlier scene in which one of her daughters asks if he's OK and then goes to visit with him, trying to connect with him on his terms.  The character of the elderly man and these exchanges made me think about an article published by BBC News earlier this week which indicates that dementia patients continue to feel pleasure at visits even when they are beyond the ability to communicate that pleasure.

One of the sentiments about Alzheimer's that I frequently encounter is that "love is remembered."  This is not the same as "love is a memory."  If love were a memory, then it is a past experience which may be recalled in a nostalgic way but not currently experienced.  Think of your first crush or your first love.  Hopefully, that memory brings you a smile but it also may be tinged with a sense of saudade, a longing melancholy.  When love is remembered, that is an active experience.  It is current.

While the patient may not be able to communicate any longer, while they may be bed-ridden and barely breathing, there is reason to believe that a visit from someone they loved in their life brings an active pleasure, happiness or an easing to their moments.  So, the moments that the daughter spent speaking softly to her elderly step-father didn't change his aphasia or slow his decline but they brought him a brighter moment or two.

If you know of someone who is in the advanced stages of dementia, don't stop visiting them.  Don't visit them for your needs.  Visit them for their needs and bring them that time to remember the love, to brighten their day.  Even if you get nothing out of the visit, they will.

Tuesday, January 5, 2016

New Year Transitions

As 2015 was shutting down, Mom and Lyn hunkered down to wait through the bitter cold.  It was cold enough to keep the New Year's festivities from the neighbors low key.  Very few fireworks were lit off and very few gun shots were heard.  Lyn was able to sleep through much of the night undisturbed.  Normally, the noise makes it a long and anxious night for the household.

Over the past few weeks, we have observed a decrease in Lyn's verbal abilities.  It is hard to describe the changes without counting her available vocabulary.  Perhaps, her speech therapist can provide us with an assessment of her current verbal capacity.

Lyn will be undergoing neuropsych evaluation soon and that may give us some insight into all the changes that are happening.  We've documented before the transitions.  She'll be going along in a relatively stable fashion for a time and then we'll see her slipping.  It is like watching someone trying to traverse a steep hill and seeing them loose their footing and slide down a bit.  You know it can happen and expect something to but it still surprises you with how rapidly things change.  Yet, there's still a part of your brain which is wishing the crossing was done with already.

I'm sorry to be grim but it seems like we're starting the year in a less optimistic spot than we would like.

Monday, January 4, 2016

Birthday Planning

2016 has started quietly.  The holidays are over and the decorations have started to come down.  Lyn knows her birthday is coming soon.  She's started advocating for me to send her a birthday gift.  Lyn and I discussed gift options and she settled on something she wants.  It was actually a funny little exchange.  She wants to do something to celebrate but doesn't know what.

She knows her birthday is in January and that it happens after Christmas.  She does not know that it is currently January and I don't think she knows her actual birthdate any longer.

Mom pointed out that we have plenty of time before her birthday for my gift to arrive (hint, hint) in time.  I had to laugh as Mom pointed out that I've never forgotten Lyn's birthday.  I've forgotten Mom's.  It was just once and I even spoke to her that day.  I realized my idiocy the next day.

Tomorrow, I'll run an errand over lunch and pick up Lyn's birthday present so it can go into Tuesday's mail.  It will be there in time.