Friday, August 29, 2014

Sage Test Reminder

I've noticed myself struggling to remember a word here and there.  Recently, it took me a minute to remember the name of Richard Dawkins and at work I completely forgot the name of a form I wanted to show a colleague.  Of course, I found the form after our meeting was over and was able to send it to him.  I also have realized that I may ask a question more than once of my husband or my eldest and, I hate to admit, I have actually forgotten small conversations that my husband and I have had in the past year.  So what does this mean?  Is it time to worry?

I have also been asked by a couple of people this week if I was concerned that I am at risk for early on-set Alzheimer's because of my sister's diagnosis.  As I explained to both people, we don't know if Lyn's Alzheimer's is connected to her intellectual disability, a genetic mutation or a family trait.  Alzheimer's has been evident in my Grandmother and her sisters before they passed.  Their Alzheimer's, however, was not early on-set and the ladies all passed well into their 80s or 90s.  Lyn is the only family member that we know of with early on-set Alzheimer's.  As a result, I tend to suspect it is either a mutation or connected to her birth and her disability.

In both conversations, one was with one of my doctors, the individual pressed on the issue asking me if I forgot things that I shouldn't.  I laughingly gave the examples cited above and said "...but we all do that."  I may misplace my keys but I still know what they look like and when I find them, I know what they are.  When I was groping to find the name of Richard Dawkins, I stated "Oh, you know!  He's been on 'Inside Nature's Giants' and is friends with Christopher Hitchens."  Don't ask me why Mr. Hitchens name came to mind when I'm much more familiar with Mr. Dawkins work.  It was just the connections my brain was trying to make to get to the name I wanted.

My doctor asked if I could take a test that would give me insight, would I?  I told her about the Sage Tests and promised to take one again.  It has been about 8 months since the last time I took the test.  Previously, I took test 4 and this time I took test 2.  After taking the two tests, I can see how one grading schema can be applied to all four tests.  I am pleased to report that my score has not changed.

There's nothing for me to worry about.  These minor memory burps are not early signs of dementia.  These are the signs of a person who is juggling a full-time job, an active family, the blog and other personal hobbies.  These are the signs of a normal person who is choosing to focus on some things more than others.

Wednesday, August 27, 2014

Down Syndrome Provides Insight into Alzheimer's

It has been known for years that individuals who have Down Syndrome have a higher rate of Alzheimer's, particularly early on-set Alzheimer's than the rest of the population.  Down Syndrome is also called Trisomy 21 because the disorder is caused by three copies of the 21st chromosome.  It appears that one of the genes on the 21st chromosome is involved in the production of Beta amyloid, an amino acid which has been implicated in the production of amyloid plaques in the brain.

In all the reading I have done since Lyn's diagnosis, I read time and again that the rate of Alzheimer's is particularly high.  However, what I did not previously pick up on is that by the age of 40 all individuals with Down Syndrome have the pathology of Alzheimer's.  This means that they have the amyloid plaques in their brains even if they are not yet demonstrating clear cognitive or memory issues.  Perhaps we have previously missed this because so many die very young as a result of cardiac issues and, until now, they really have not been the focus of concerted or widely available research.  What research has been done has been mostly focused on how to improve their cognitive abilities or reverse other effects of the syndrome.  This may be changing.

Scientists have enlisted the help of individuals with Down Syndrome in a study to see if a new drug may be used as a preventative therapy.  One of the issues with testing such a drug has been identifying someone who may develop Alzheimer's years in the future when there is no obvious indicator for them to have it now when such a therapy may be most effective.  Could I develop Alzheimer's in 10, 20 or even 40 years.  Sure.  Would I be a good candidate for a long-term study into a preventative drug?  Not without significant testing to see if I'm already at risk though I'm not showing symptoms.  An individual with Down Syndrome, however, is a great candidate because they are essentially guaranteed to get Alzheimer's if they live long enough.  We see Alzheimer's in a couple of people my sister has known through Special Olympics and, like her, they are only in their 40s or 50s.


Tuesday, August 26, 2014

Unplugged and Instructed

We keep Mom up and running with a laptop.  It is a retired corporate item which is slicked and refurbished before we get her set up with it.  Every few years, we replace it with a newer refurbished item.  When we were there earlier this month, we took her another laptop to replace one that she's had for at least 3 years.  It worked great for a week after our departure and then it failed.  As a result, Mom's forceably unplugged until she receives the older one which was brought back with us.

Mom's gone through a bit of withdrawal and Lyn's on a tear about the computer problems being Mom's fault.  Lyn told Mom that my husband had gotten the computer set up right and that Mom needed to just follow his instructions on how to handle it.  Mom clearly had it plugged in wrong.  Lyn stridently insisted that it get unplugged and plugged back in properly.  Mom unplugged everything in front of Lyn and plugged it back in.  The computer didn't turn on despite these efforts.  Lyn's response was just "Oh."

Lyn's not limiting her instructions to Mom to computer issues.  Mom had sneezed and Lyn came quickly out of her room to teach Mom the proper way to sneeze.  Mom listened to Lyn's instructions and was able to confirm that she had followed proper procedure.  Lyn was not convinced.

Monday, August 25, 2014

On Pluto

Finding first-person accounts of Alzheimer's disease or other dementias is becoming increasingly easy.  While the number of individuals who have been diagnosed with dementia has been increasing for several years, I think part of the increase in these accounts is a result of more people writing about their experiences.

One of the first I encountered is While I Still Can by Rick Phelps.  Rick was diagnosed with Early On-Set Alzheimer's when he was about 54.  Rick has created a very active support group for individuals with dementia or individuals who care for them called Memory People.

One of the most recent accounts is titled On Pluto: Inside the Mind of Alzheimer's by Greg O'Brien.  Mr. O'Brien is a reporter who was diagnosed with Early On-Set Alzheimer's a couple of years ago.  Using his professional skills and his knowledge of Alzheimer's acquired from watching a couple of his relatives, including his mother, pass from the disease, he decided to write about Alzheimer's from his own perspective.  On Pluto provides you several ways to gain access to Mr. O'Brien's perspective because there is a book, a movie and a blog.

Who better to talk about Alzheimer's than those experiencing it.  Check these out.

Friday, August 22, 2014

Bowling While Angry

Lyn has, for weeks, talked smack about going bowling and beating me.  She was insistent that we add bowling to the list of activities for our visit.  We, of course, obliged.

We planned the day to start with an early trip to the zoo, lunch at Tim's Place and then round it out with an early afternoon bowl.  Lyn wanted to bowl first but was mollified when we pointed out that the bowling alley would be cooler than the zoo in the afternoon.  While we were at the zoo, she started suggesting we go to lunch after we bowl.  We pointed out that my youngest was hungry and should eat first.  As the morning progressed, she got more antsy to bowl and more irritable with me.

Ah well.  No surprise really.

When we made it to the bowling alley, it was still an early hour.  However, I was fighting a major headache and the thought of 2 or 3 games was just brutal.  When Lyn started telling Mom we had to pay for at least two games, I quietly held up one finger over her shoulder, begging for mercy.  By this point, Lyn was seriously mad at me and the smack talk escalated.

She paid for her game and marched to her lane.  She got madder when she realized it would take us a few minutes to rent shoes, pay for our game and find balls that we could manage.  We're not the bowling enthusiasts that she is, after all.  By the time she could toss her first ball, she was in full arrogance and anger which she directed towards me.

I made the mistake of trying to take her picture and she snapped at me "Not now!"  If she had known how to flip her middle finger, she would have.  Instead, she flipped her whole hand at me.  I was startled enough that I lowered the camera as I pressed the button.  The shutter snapped as she whipped around to wait impatiently for her ball.

I put away my camera before wrapping my arms around Mom's neck and hugging her.  We both quietly chuckled as she apologized.  "She can be a real brat sometimes."  "Yes.  I know.  I won't take it personally though."  I laughed.

As the game progressed, she kept it up.  She would loudly challenge me each time I went to get my ball, trying to rattle me.  Normally, she's not one to show poor sportsmanship.  She historically has cheered others along while still being competitive.  This day, if we acknowledged her strike, she'd smirk and say "I know."  About the 8th frame, I finally looked over my shoulder after getting my ball and being verbally abused again and just said "Enough" and gave her my best Mom glare.  (You know the one.  It is the one that a misbehaving child can sense from atop a display they've climbed three store isles away and it makes them look in your direction where you mouth the words "Get down" and the child complies without actually hearing the words.  Yeah.  That one.  I learned it early and well.)  She snapped her mouth shut.

We wrapped up the game.  My head was feeling a bit better and I could have gone for a second game but wasn't interested in dealing with the attitude anymore.  So, we wrapped up.  Lyn won.  She beat us all by at least 9 points.  Some of us had a much larger deficit.  However, she was too angry to accept our congratulations.  She was even mad that she had to wait for the rest of the family to finish up on the next isle.

We had tears in the car on the way home.

She was hateful to me but it was only me towards whom she was hateful.  She didn't act out towards my family or Mom.  Mom usually catches the brunt of it.  From her perspective, it had to have been hard.  All she wanted to do was beat me at bowling.  She did.  However, the day didn't go exactly as she wanted and she struggled with it despite enjoying the three places we had grouped together for the day.

Thursday, August 21, 2014

Gran Quivira

We braved an hour and a half drive from Albuquerque out to Gran Quivira.  Gran Quivira is the largest of the three ruins which are collectively known as the Salinas Pueblo Missions.  Gran Quivira is also the furthest from Albuquerque.

The day was beautiful and called for us to hit the road.  New Mexico is having its first actual monsoon in years and is as lush as I can ever remember seeing it before.  The grass was tall and there was a profusion of wild flowers.  There were pollinating insects galore.  We were struck by the variety of native bees and thrilled to see hummingbird moths for the first time.  Even the park ranger who has worked there for over 20 years commented that he had never seen so much green there before.

On the hill at Gran Quivira, looking West
 The paths around the site are paved and proved easy for Lyn to manage with the use of her walking stick.  With all the sunlight and open spaces she was comfortable walking around.  As a result, we were able to stroll through the ruins, enjoying the sights.  (Later in the week, she struggled to stay calm in the Museum of Indian Arts and Culture in Santa Fe because the lighting was lower and done for theatrical effect.)

One of the small kivas sits beside some of the housing ruins.
Lyn humored us as we toured the ruins before sitting down for our picnic lunch.  She had wanted to eat first but didn't argue.  As we came down the hill, Lyn took a moment to rest on one of the benches beneath a tree.

As she rested, the park ranger came down the hill on his way back to the guest center and greeted us. My eldest had a question and took the opportunity to ask.  We learned that the piles of rocks in each of the ruin's rooms covered a 50 gallon barrel which is buried in the sand that has been back filled into the rooms.  This is a crude drainage system, the ranger explained.  It is necessary to prevent the walls from being damaged by the ground washing away in heavy rains.  He admitted they were infrequent except for this year.

This exchange took just a couple of minutes and before it was over, Lyn had gotten up and walked determinedly away.  She did not even attempt to interact with the ranger.  That was deeply surprising to Mom and me given how much she likes to be the center of attention.  She had swung her cane up parallel to the ground was was making haste down the hill towards the car, never once looking back to see if we followed.

Wednesday, August 20, 2014

Walking with the Stick

Months ago, I told you that my former step-father had made Lyn a walking stick to help her with her balance issues when she is out and about.  When he had finished it and sent it to her, she refused to show it to me.  All I knew was that she had requested a riot of colors and that she was keeping it in her room to keep it clean.

When it was suggested that she use it on the day trips to Santa Fe or around town with Mom, Lyn refused saying she preferred to hold onto Mom's shoulder.  Mom went so far as to ask my step-father to speak with Lyn and encourage her to use the walking stick.  He did.  He talked about Mom getting older and that Mom might not be able to handle Lyn hanging onto her shoulder.  He asked Lyn to promise to use it.  She begrudgingly did and he thought the issue was solved.  It wasn't.  She stormed out of the room angry and still refused to use the cane.

Mom and I talked about this the night that my family arrived for our visit.  We decided to apply a bit of peer pressure and enlisted the help of my husband to convince Lyn to use the stick.  We assured her it could be cleaned.  It was made for use, after all.  We told her Mom may be too distracted corralling my little one that her shoulder may not be available.  We also pointed out that the paths would be uneven and the stick would help her.  Lyn eventually gave in and agreed to take it with us to Tinkertown the next morning.

We did not exaggerate or lie to her.  As you can see from this picture of Tinkertown's entrance, the place is not your standard or well laid-out museum.

It has narrow paths in the building.  The floors are uneven and patched used license plates.  The lighting is poor and the construction is a hodgepodge of pieces cobbled together.

The cane was perfect.  She was able to use it without a problem and she managed without once having to reach for Mom's shoulder.  She didn't always let it touch the ground, sometimes carrying it a couple of inches above the ground.  However, it was there when she needed it.

It is a beautiful cane made of hand turned dark wood with a tight grain.  The handle is carved to look like a toucan's head.  My step-father did a very good job on the cane.  We kept insisting that Lyn use it with each trip we took during our week.  Hopefully, she'll start to use it more.

Tuesday, August 19, 2014

Moving Back Home

Lyn is currently unaware that some changes are about to happen.  They're going to be hard on her, but we'll help her get through them.

Their lovely neighbor is putting her house up for sale at the end of the month and moving back to her home state of Texas to be closer to her family.  She's been exceptionally kind to Lyn ever since she moved into the neighborhood and Lyn often likes to invite the neighbor to join them if they go out to eat or drive up to Santa Fe.

Lyn has been in the disability waiver program for over ten years now.  In that time, she's had only one case manager.  Lyn's case manager has been an important part of Lyn's care ever since Lyn was assigned to her case load.  Lyn has seen her on a monthly basis ever since.  Her case manager has decided to return to her home state of Montana where her family still resides.  She has already sold her house and her move is just a few weeks away.

We have not told Lyn yet of these changes.  It will make it harder on her if she knows for longer.  She will worry and cry about it each day between now and when the events happen.  So, Lyn will be told when the For Sale sign is placed on the neighbor's house and at the team's next monthly meeting.  Neither lady will leave without saying "Good bye."  There is no sneaking away.  We're just trying to delay the inevitable tears a bit.

A new case manager has already been identified for Lyn.  The new case manager is very experienced in this work and was chosen specifically because her own father is currently an Alzheimer's patient.  The hope is that her personal experience with Alzheimer's will provide her with insight into what is happening with Lyn.

So far, Lyn has handled the transition to new respite providers pretty well.  Hopefully, she'll still have some resiliency in dealing with these pending changes.  

Monday, August 18, 2014

Introducing Herself

Lyn is completely unafraid to introduce herself to someone, particularly if she perceives them to be a person of authority.  She'll stop police officers and firemen to thank them for their service.  When we were with her last week, we visited a local restaurant for breakfast and two officers were gracious recipients of a few minutes of her attention as we waited to be seated.

On Saturday, Mom and Lyn had to run some errands and stopped at a local pizza place for a couple of slices while they were out.  It was early and they were the only customers when they entered.  As they waited for their order to be delivered to the table, another party entered and sat down.  It was Governor Susana Martinez, two aids and a State police officer.  Lyn recognized her and said "I saw her at the mall about a month back."  Mom explained who was at the table.  Lyn expressed a desire to thank the Governor for her service.

Mom asked the waitress if she could get permission for Lyn to go say "Hello."  The waitress was very helpful.  She made the inquiry with the Governor and escorted Lyn over when the Governor quickly replied to "Bring her over."  Lyn was able to introduce herself and chat with the Governor for a couple of minutes.  The Governor gave her a hug and Lyn came back smiling from ear to ear.  Upon returning to the table, Lyn announced to Mom "I told her I am special and have Alzheimer's so she hugged me!"

The hug doesn't surprise me.  Governor Martinez was not just greeting a constituent on Saturday.  I suspect she quickly understood Lyn.  Governor Martinez has an older sister, Lettie, who has special needs.  Lettie lives with the Governor who has been an active part of her care since their childhood.  Lettie has competed in Special Olympics and Governor Martinez has cheered her on as I have for Lyn.

Friday, August 15, 2014

Yearly Informal

Each summer visit with my sister now includes a question that Mom and I discuss.  Sometimes my husband provides feedback as well.  The question is "What are the changes you notice from last year's visit?"  This question is actually hard to answer for me and Mom because we're keeping watch of the changes happening with Lyn.  My husband is a bit more removed from Lyn's care which allows  him to notice things that we tend to forget to call out since we've been noting them all along.

This year has brought to our attention that Lyn's behavior and her responses are more juvenile.  For example, she frequently seeks affirmation or praise for an action which should not require it.  When she gets a high score on her electronic bowling game, she would ask us to guess her score and then brag about it.  When we went bowling at the alley, she continued talking about how she was going to beat me while expecting me to cheer each of her efforts.  I know she's competitive and a bit spoiled, but she was hateful towards me in the alley and I received numerous sidelong glares.  She would call out to me as I would approach the lane with my ball but get ugly if I said anything to her or if I tried to take a picture.  She pushed it enough that I turned to her at one point and quietly said "Enough" over the ball in my hands.

Jealousy and paranoia are a daily occurrence even when the day is focused around her.  At one point on Thursday, she demanded that Mom tell her what Mom and I had been speaking of so that Lyn could make sure it was acceptable to her.  Lyn had been putting on a bit of a show at the zoo of how difficult it was to walk and how much she needed to sit on each available bench that I had expressed concern for her ability to bowl.  When Lyn heard this, she got angry at me for doubting her.

Lyn is isolating herself more.  Each day, she would spend and hour or more in her bedroom by herself.  It was deliberate and, I think, her way of not getting over stimulated or jealous of my kids.  She got mad if one of them came to her room to check on her and went so far as to close her door "to keep them out."  The keeping them out was a sign of her paranoia.  My kids are old enough to understand when someone wants to be alone and to follow directions to stay out of Aunt Lyn's room. So, they weren't offended.  They know what is happening to her and are very good about not taking her actions personally.

Last week, I wondered if Lyn would remember my little one's name while we were here under the same roof.  She does not.  She has not stated my child's name once to the recollection of Mom, my husband or me.  She would call the child "Goofy" or "Snicklefritz" instead.  Fortunately, my child never corrected her or made her feel bad about this.  The reality is, however, that the name is gone from her.

Lyn's hoarding money.  It is all small denominations but that's really all she has available to her.  Every coin is saved.  When she has dollars in her purse, she says she wants to spend them, but then only wants to spend one or two.  When we went to the zoo, Mom had Lyn pay her own entrance fee.  It was $9 and Lyn pulled a stack of ones from her purse.  She peeled off $2 and handed it to Mom.  Mom prompted her for more 4 more times and Lyn got madder with each request.  "I don't want to spend this much!  I want to save it!"  Mom had to remind her that the zoo costs that much and it was Lyn's responsibility to pay her own fee.

The week with Lyn has given us an opportunity to see and experience some of the challenges surrounding her care.  It has allowed us to see her changes and the stresses on Mom.  Our yearly, informal assessment indicates that Lyn's dementia is progressing which is no surprise to us, really.  Unfortunately, it is hard to anticipate where she will be in a year.

Thursday, August 14, 2014

Behavioral Assessment

Lyn recently underwent a behavioral assessment to determine if behavioral therapy would be of assistance to her.  The assessment was sent to Mom last week and we reviewed it together when I arrived.  There were a number of errors and some concerning statements which prompted us to ask for some time with the therapist to review the assessment.

The therapist had some time early yesterday morning.  We were able to meet in person and go over each item.  The errors were easy to correct and quickly resolved.  For example, it said "support staff" instead of "mother" and it referenced "both biological parents" having provided care for Lyn's life.  Lyn hasn't seen our father since December of 1978 and the reference to him has been removed from the assessment.

The concerning statements ended up just needing explanations.  At two points in the assessment, we read "Socially destructive.  At risk of self-harm."  We read that as meaning that Lyn was socially destructive and that she could hurt herself physically.  We were glad to learn that we were incorrect.  The therapist explained that Lyn's dementia causes paranoia and anxiety which is socially destructive because Lyn no longer works to maintain casual relationships.  Her social circle is getting smaller because she's no longer cognitively able to engage in social small talk.  If another day hab client asks a question and Lyn thinks the question is about her, she withdrawls from social interactions with the other client as a result of her paranoia which is a direct result of the Alzheimer's.

This plays into the "At risk of self-harm" statement.  Lyn is not at risk of cutting or other forms of physical self-harm.  In this context, the reduction of social interactions and the increase of social isolation is viewed as harmful to the individual.  These statements are considered standard for these assessments though they were very concerning to our initial reading of them.

The time and explanation the therapist provided was greatly appreciated.  She helped clarify our understanding of her assessment of Lyn.  The interaction was educational, interesting and well received.  She took a time to also set the context for the service plan that she will write up.  It will be more targeted to the day hab staff and Lyn's respite provider.  The therapist indicated she was happy to review the assessment with us and to answer our questions because she often wonders if her assessments are read in detail by those who are engaged in the care of her clients.  She often receives no feedback at all.

So, if you end up engaging the services of a behavioral therapist to help mitigate the anxiety of an individual with dementia, please read the assessment and ask about anything you don't understand.      

Wednesday, August 13, 2014

A Month Ago

Lyn took some time yesterday evening to look through some of her photo albums.  She wanted to show me a picture of her current boyfriend.

As she was flipping from page to page, she announced that she didn't want some of the pictures anymore.  They were pictures of her Special Olympics team celebrating their ribbons and medals after competition years ago.  I offered to take the pictures for the blog if she didn't want them anymore.  When she set them on the table next to me, she explained that they were taken "way more than a month ago."

The "month ago" phrase has popped up a lot during our visit.  Lyn no longer has the ability to remember how long ago an event occurred.  She resorts to saying "about a month ago" or "more than a month ago" when she's unsure of the timing.  This was highlighted for us in an unexpected way on the way home from dinner Monday night.

As we drove home, she had finished a repitition of her drive home mantra when she stated "That woman who taught me to tie my shoes about a month back... I don't remember her name."  Mom responded with "You called her Nana."  I could tell from Mom's voice that she was startled and I whispered to her "How old was she then?"

Lyn was remembering a time when she was 8 years old but to her it was only a month ago.

Tuesday, August 12, 2014

Computer Troubles

After lunch yesterday, Lyn turned to my husband and announced "You know what I'm having trouble with?"  

He looked up and asked a foolish question.  "What?"  

"I can't get into my calendar on my computer."  He nodded his head and walked towards the back of the house.  Lyn assumed he was heading for her room to work on her computer.  With a satisfied expression, she turned to Mom and said "What?  I was subtle."  Mom and I both had to choke back laughter.

My husband came back a few moments later having just gone to wash his hands.  Lyn was already in her room waiting for him.  He realized what was happening and decided to go back to assist so that she didn't have another reason to be mad at us today.  Two minutes later, he was back having fixed the issue.

There was no issue.  Lyn's just forgetting how to open programs on her computer.  He opened the program she wanted and confirmed there was nothing wrong.  It was simple operator error.  He's kind enough to not point that out to her and she was delighted he had done what she wanted.

Monday, August 11, 2014

We're Ahead of the Game

My family and I were in Albuquerque for less than a full 24 hours when Lyn pulled out her list titled "To Do" and announced that we had to have a talk about what we were going to do.  She started to go through the list she had compiled.

"I am a good speller" she announced.  She then proceeded to start spelling the words on the list.  I had to parse the letters quickly because didn't pause between the words.  She didn't know what she wanted to do today but we had to make a decision before we progressed any further into Sunday afternoon.  A brief discussion ensued and a decision was made.

Lyn immediately turned to my husband to ask "Is that OK?"  Once she got the approval from my husband, she was content.  She put the list back on the fridge and walked away.  If he had declined, she would have opened up the topic for debate again.

She's out of her schedule and we had tears by noon on Sunday.  I think she was mad that we had said we were not getting blended drinks at Starbucks.  When she had been with us for about an hour yesterday, she came out clenching her stress ball.   I saw her tension and got her to tell me what would make her feel better.  We played a game of memory and she was happy.

I know she's happy that we're here.  She's just going to struggle a bit while we're here.  But as she said, "We're ahead of the game" and have options to enjoy with her.

Friday, August 8, 2014

Christmas List

I guess it is time for me to get shopping for Lyn's Christmas present.  She's already dropping hints.

"You know what I really wish I had?  A game about The Price is Right."

She's just as subtle as ever.

Thursday, August 7, 2014

Little Sisters

Look at her smile!
I love it.
Green has always been a good color on her.

The spots on the picture are a result of surviving the house fire.  I am very glad Mom had the photo albums so tightly packed they didn't burn; just smoldered around the edges.

(Please note the booties on my feet.  They were a promotional item made and distributed by Anheuser-Busch, the beer company.  Our uncle delivered beer around the time I was born and gave them to Mom.  When our house burnt down, these booties were one of the few things I was sad couldn't be replaced.   Ah well.) 

Wednesday, August 6, 2014

The Secret Weapon

I spoke with Mom and Lyn last night.  Lyn was in a contentious mood.  She was on Sunday and Monday as well.  She's looking forward to our visit but she's also growing increasingly argumentative.  Are they connected?  I don't know.  It really doesn't matter.

We expect that Lyn will be fractious while we visit.  Our job is to redirect, distract and amuse.  Our job is to run interference for Mom and let her have a bit of a break.  I know how to play along with Lyn.  My husband is extremely patient and unflappable.

Actually, he's sort of the secret weapon in this because if he says so, then it must be in Lyn's eyes.  For example, we have a couple of places we want to visit while out there and Lyn's started to balk at the thought of going.  She knows the drive to the location will take us out of town and is anxious that we won't be home early enough in the day.  The drive is less than an hour each way, but she no longer understands that.  So, when the little venture was mentioned, she refused.  When Mom pointed out that my husband wanted to go, Lyn's tone changed immediately.  Why, of course, we'd go!  If HE wants to go, then we're going.  Why would we consider otherwise.

Mom and I had a chuckle today over this behavior.  Lyn is her Grandmother's descendant, after all and Grandma would have pulled the same thing.  It is a good thing I've never been a jealous wife because Lyn's flirtatious behavior would pose problems.

Tuesday, August 5, 2014

Living Accessibly

When an individual has Alzheimer's, the on-going brain decline impacts the individual's balance, vision, hearing, dexterity as well as their cognitive abilities.  Living at home for as long as possible is the desire of most of us.  It is our space with our belongings, after all.  However, our home may not be the safest place for the individual with Alzheimer's or other dementia.

My home is typical of my neighborhood.  It has two stories and the bottom floor is not all on the same level.  The entrance, the kitchen and dining room are on one level.  The living room is down a step.  The library and laundry room is down two steps.  The stairs up to the second floor have two landings with a turn two steps down from the top.  Let's not even address the railing situation.  My home is an accident waiting to happen for someone with failing balance, vision and dexterity.   Fortunately, Lyn doesn't have to navigate all these issues on a daily basis.

Lyn's home  is all one one level.  She has a single step up into the house.  Once inside, she doesn't have to navigate up or down another step.  Her bathroom now has a handle she uses to get in and out of the tub.  If that becomes too difficult, her bathroom has enough space that the tub could be refitted to allow her to just walk into a shower.  It is a minor renovation if it becomes necessary.  Some homes, like mine, would require much more work to make safe.

What do you do if you've got to improve the safety of your home and yet you have limited resources?  There are some low to no cost changes that you can make such as rearranging or reducing the amount of furniture to create more open walking spaces.  If the person struggles with round door knobs, consider switching them out for lever handles.  The American Foundation for the Blind has a list of helpful suggestions you might consider.  The Design Linc has quite a few articles on the topic of improving the accessibility of your home, both inside and out.  A little bit more internet digging will provide you with more information about disability accessibility.

One thought that popped in to mind as I was contemplating this post was the shower.  I've read many times that individuals with Alzheimer's often resist showering as their disease progresses.  Alzheimer's educator and advocate Teepa Snow speaks about the impact dementia has on a person's vision.   I've also read the suggestion that perhaps the Alzheimer's patient is confused by the shower because the water, though wet, is essentially invisible.  So, perhaps an LED shower head which lights up the water would be useful for the Alzheimer's patient.  If the water is blue or green and contrasts against the white of the shower, perhaps the person would see it more easily and be less confused.  It is a small change, but it may be worth investigating.

Monday, August 4, 2014

Little One

My little one is excited that we'll soon be visiting Grandma and Aunt Lyn.  The child knows that Aunt Lyn's brain is changing but it is currently hard to know just how much is understood.  It is going to be interesting to watch them together.

My child is loving and gentle.  However, kiddo tries to be a bit controlling at times.  Aunt Lyn is great with kids and is happy to play with them.  However, she's used to being the center of attention and is also a bit controlling.  Hopefully, she will be in a charming mood and not in an argumentative mood like she was yesterday and they'll get along.

My child's name mostly escapes Lyn these days and she uses "Little One" to refer to the child more often than not.  Perhaps, while we're there, our constant use of the child's name will help her recall it more easily.  We'll see what happens and how the two interact.

Friday, August 1, 2014

Growing Excitement

Lyn was in a great mood on Sunday when we talked.  She's so excited we've got our plane tickets that she practically dances each time she talks about it.

She's been planning an agenda for our visit for weeks.  As she thinks of things that she'd like to do with us, she has Mom put it on the agenda.  With each of our calls, she reviews the agenda with me to make sure that I've bought into her plans.

She's also now into count down mode, marking off each day on the calendar.  She asks Mom how many days are left.  If she speaks to me, she asks me if I know how many days are left as well.  I let her tell me.

While it is highly repetitive, I don't mind since it is making her smile more.