Thursday, June 22, 2017

Showing Pride

June is Pride month and Lyn LOVES the Pride parade!

She loves the colors and the happiness of the Pride parade.  She's attended for several years now.  This year, she received an invitation to view the parade from under the awning of a business owned by her former manager.  This added even more happiness to the day.  

Lyn got to enjoy the parade AND see a favorite person!

For all of our LGBTQIA friends and family, know that we love you and celebrate you being in our lives. 

Tuesday, June 20, 2017

The Stairs

If you think of Alzheimer's as a stairway which the individual is going down stairs, you find that they may linger on a step for a time.  Things might seem stable and the changes seem to hold off.  They do, for a bit, and you adjust to whatever is the new normal on that step.  Then one day, you realize that the individual has quietly shifted from one step down to another.  Or, you look back up to the top of the stair, where they began and you realize that they're much further down this course of stairs than you had initially realized.

Lyn's shifted down a step or two.

Her language is noticeably reduced.

Her days are now interrupted again by crying jags.  She just "gets a feeling" and will start crying.  Distractions and redirections no longer work.  She will cry for a few minutes and then stop.  She's not panicked.  She doesn't know why she's crying.  She does appreciate you sitting next to her or holding her hand when she cries.

She's stopped coming into Mom's room in the mornings to wake her up.  Lyn may be awake, but she's either staying in her room or wandering the house for a bit.

She needs help picking out her clothes most days and has started putting them on backwards.  Mom now helps her get dressed daily.

When you realize the changes that have happened recently, you're left wondering how many more steps this stairway has for her.

Wednesday, June 7, 2017


We're on the cusp of summer.  Lyn's plotting and planning my family's visit to New Mexico.  She's identifying all of the places she wants to take us and many of the usual spots are on the list.  We'll definitely get breakfast burritos one day and go bowling another.  All of that needs to wait until August however,

In the meantime, I am going to step away from the blog here and there this summer.  I've had a lot on my plate for the past year and the winter and spring were especially challenging.  I need a little time to recoup.  Next week is the first such quiet blogging time.

It is planned.  Nothing is wrong.  Activities will be done and I will probably be exhausted by the end of the week.  That's OK because it should be a good exhausted.

So, while I'm enjoying some extra time away from the keyboard, I hope you'll have a great week.  Put a sprig of mint in your iced tea and enjoy a little quiet time watching the sky's colors as the sun sets.

See you around the 19th.

Tuesday, June 6, 2017

An Unexpected Connection

On Saturday, Mom and Lyn attended the matinee performance of Mary Poppins at their local theatre. It was three hours and Lyn enjoyed it tremendously.  Mom said it was past midnight last night before she got "Supercalifragilistic" out of her head.  Lyn felt the actress who portrayed the titular character was very good.

While there, they encountered a family they have long known.  The two girls, Lyn and the other family's daughter, had gone to school together.  The mother is older than Mom and her health is not good.  It appears the sister has stepped in to provide additional support now that the father has passed.  When the mother commented that her husband had passed late last year, Mom extended her condolences.  Lyn paused for a moment before blurting out his name.  It wasn't a question, asking for confirmation.  It was a statement of fact.  Both mothers were stunned.  Not only was Lyn right, she had recalled a piece of information which had been of passing note from more than 30 years before.

We can never explain these moments when certain neurons fire and she recalls something from her deep past.  We recognize that more and more, all she has is her deep past.  Things that made her angry last week are long gone this week.

Monday, June 5, 2017

Makes You Wonder

Lyn enjoys watching Family Feud.  She likes Steve Harvey and calling out answers to the questions he poses to the contestants.

On Friday, the episode she watched included the following:  "We asked 100 women to name an animal that best describes your husband's lovemaking style."

Lyn's answer?

A raccoon!

Wednesday, May 31, 2017

Mental Inflexibility

Lyn has no remaining mental flexibility.

If she gets angry, she'll rage for hours on high, circling repeat.  It can be a small offense that sets her off.  It could be as small as finding green chile on her donut cheeseburger.

My office mate would point out that her holding a grudge is a family trait given my muttering "water!" like a curse over a mismate drink last week.    I may have grumbled but I didn't rage and Lyn's filter is permanently broken.  She's unable to differentiate from the small grievances and the great offenses.

Mom tries to redirect her but Lyn's tenacity doesn't give up.  I feel for Mom and wish I could change it for her.

Tuesday, May 30, 2017

Tickets Galore

Last week, Lyn's care provider took her to Hinkle, an arcade, to play some games.  Lyn likes going and has gone regularly for years.  She will collect tickets and save up for an item which catches her eye.  At some point, she decided she needed to save enough tickets for an iPad and has been working toward the 11,000+ tickets to reach that goal.

While there last week, Lyn paid a visit to the ticket machine and put in a little money.  The machine started spitting out tickets and didn't stop.  She ended up with a pile of several thousand.

She was so excited!

Despite the pile being the result of a machine malfunction, the staff didn't contest her luck, giving her the bag to carry them home.  She is now about 500 tickets from her goal.  Management has already set an iPad aside for her and are cheering her on.

Thursday, May 25, 2017

Conversion Time

Lyn's requested that her bath tub be converted to a walk-in shower.  She's explained that she would feel safer not having to step over the sides.  It makes sense.

Tub to shower conversions are pretty common.

The idea has been floated before as something that may need to be done for her.  It would be easier for her to walk-in and shower than for her to bathe sitting down.  If she wanted to sit, the shower could have a built in bench at one end or a separate shower chair could be made available.

We'll have to start looking into it, I think.

Tuesday, May 23, 2017

A Man in Uniform

Lyn had an exciting week.  She got to do one of her most favorite things.  She got to interact with a police officer.

It may be the man-in-uniform effect, but she does love flirting with the police.  She loves to thank them for their work and will sneak in a hug if she thinks she can get away with it.  She will look for an excuse to get their attention and wanting to say "thank you" has gotten her good results over the years.

She's been talking about wanting to do a painting specifically to give to the police as a "Thank you".  She was insistent that this was necessary.  She worked on the painting and when it was finished, an officer paid her a surprise visit while she was with her care provider.  It turns out her care provider has a brother who is a police officer.

Lyn was given a tour of his patrol car and allowed to sit in it.  She was very impressed by the equipment within.

She was then able to give the officer her painting, thank him for his work, and get a hug.  

The officer was kind and gracious to Lyn.  (In all honesty, they always have been.)  He made her feel special and excited over the whole exchange.  His acceptance of her painting made her feel proud.

Our thanks go out to this officer and his sister, Lyn's care giver, for arranging this visit for her and photographing it.  She was thrilled!

Monday, May 22, 2017

Looking for Flowers

Life took an unexpected turn which knocked me for a bit of a loop.  I needed to take last week off from blogging because I was doing good to get through each day, making sure all the required boxes were checked and the living beings in my home were all at least fed.  I'm starting to feel things normalize again, as evidenced by this weekend's sewing, and should be back to blogging this week.

All is well with Lyn.  Nothing new or worrying has happened since last I wrote.  Her care provider continues to work with hr on painting and Lyn's really cranking them out.  

It's funny because she's selling her paintings as quickly as she makes them and refuses to let Mom put the money in the bank.  In talking with her about it last week, I suggested she should put some of her painting money in the bank.  She strongly objected saying that she needs it for supplies.  This strikes me as funny because worrying about money or where the money is located is a common dementia symptom.  Lyn likes to check her little stash and know exactly how much she has available.

I'm not sure she's had to buy more paints yet; just canvases.

Wednesday, May 10, 2017

Why Do It

Why do we take Lyn out in the community when it can cause her anxiety?

If we kept her home where she always felt comfortable, we would artificially be limiting her world and preventing her from being able to be engaged.  She may not engage with people and events the way she used to, but by pushing and letting her experience new places and events in a way that we try to make safe for her, we're asking her to keep engaging.  If she stayed at home, her decline would be faster than it is already.

If we kept her at home, her opportunities for physical activity would be reduced even more and that would also speed the decline.

She's got good days and not so good days.  Some days, she's on top of her game and you wouldn't realize she has Alzheimer's.  On those days, her walking is more stable and she less anxious.  We appreciate those days.

Ultimately, we do it because she likes going out.

This makes the effort worth it.

For the friend who suggested we hire off-duty firemen to escort Lyn on her outings, I love you.  I got a good laugh at that suggestion and have stored it away for when I am old and feeble.

Tuesday, May 9, 2017

Safety Options

So, if Lyn is getting confused and feels lost when she's more than a few feet from you when you're out in public, what are our options for her safety?

Currently, Mom has her hold hands or has Lyn place her hand on Mom's shoulder.  The physical contact is reassuring to Lyn.  However, it can impede movement and is more difficult if Lyn has her cane.

Technology based solutions are more targeted to when you are trying to keep the person wandering off from home.  Though a Fitbit or similar tracker may be useful if the caregiver had a cell phone which has been paired with the device.  The concern I would have with it would be if the individual with Alzheimer's would keep the device on.  We've long had to use a medical alert bracelet that Lyn is not capable of taking off so that she's constantly identified.

There are a few other options we can consider.

If Lyn's willing, we could use a wrist/belt loop tether which are designed for an adult and toddler.  The wrist straps are cloth and may fit her wrist.

If she's not willing for the tether approach, there is the My Buddy Tag system which looks more like a bracelet but alerts the adult when the other person is out of a pre-set range.  The wrist unit expands to 8 inches which would be big enough for Lyn's wrist.  (I see "My Buddy" and my 1980s childhood rears its head with a particular jingle.)

I posed the question on FaceBook yesterday about using a tether to help keep her safe.  The question sparked some good conversation and suggestions were made.  The general consensus was that it didn't matter what others think about using such a device.  The concern is more about caring with Lyn with dignity.  To do this, we need to pose the use of such devices as a choice in which Lyn has a say.

Monday, May 8, 2017

Lost In A Crowd

Lyn's community access provider gave us an update yesterday.

She has noticed that Lyn's having a lot of problems following a conversation.  We've noticed it too.  Lyn can keep a concept for about 2 or 3 sentences.  Most of the time, it is a single sentence or question from you and a single sentence from her in response.  Conversations can only be maintained by the other person.  This means that we have to do a TON of prompting to help Lyn feel like she's engaged in a meaningful exchange.

Lyn's provider wanted to test this change out.  She asked Lyn if she (the provider) should get a tattoo, her nose pierced or have her earlobes stretched.  We would have expected Lyn to tell her that all of that was "unappropriated" or give her The Look.  Lyn instead responded that she (Lyn) didn't like being called names.

Most concerning is that when they're out, if Lyn gets more than a few feet from her provider, she seems lost and confused.  Lyn's no longer able to recognize her provider if she's more than arm's reach away.  Her care provider is having to keep hold of Lyn's hand or have Lyn hold onto her shoulder when they're in public.

Yesterday, as they were coming home from an outing, Lyn's provider asked if Lyn knew where she was.  They had just turned a corner and were about a block from home.  Lyn goes through this intersection multiple times a day and she no longer recognizes it.  Two weeks ago, Lyn did know the intersection.

As a side note, Blogger is now suggesting "unappropriated" as the proper spelling to me.  I guess we've used that word enough here for the algorithms to recognize it.  It has yet to suggest "day hab" as acceptable.

Thursday, May 4, 2017

Who's Spoiled

A half hour belly rub knocked Nikka out.

Not sure who is more spoiled.  The woman or the dog?

Wednesday, May 3, 2017

Children's Books

If you have young children in your family along with someone who's got Alzheimer's, you may want to consider some resources which can help normalize what's happening to help the children understand.

Story books help children process what is happening and allows them to see that others experience what they're experiencing.  It's been a few years since we've looked at what books were available on this topic and I've found a few more.

They Love You No Matter What by Gregory Affsa
Weeds in Nana's Garden by Kathryn Harrison
The Memory Box by Mary Bahr
Really and Truly by Emilie Rivard
Forget Me Not by Nancy Van Laan
Raising Grandpa by Lucinda Moebius
Why Does Grandma Call Me Jenny by Karen Kruse Strobhar
My Name is Cally by Donna Balthazard-Dube

For older children and young adults, consider
And Every Morning the Way Home Gets Longer and Longer: A Novella by Fredrik Backman
The Dementia Diaries by Matthew Snyman

If the individual with Alzheimer's is the parent of the child and has early on-set, consider This is My Family by Karen Harborow.

I hope some of these are helpful to you.

Tuesday, May 2, 2017

A Caught Breath

Sometimes, a headline will make me catch my breath.  Last week, my husband and I were at the dining table, on our laptops.  He turned his screen towards me in a silent "look at this."  I read the headline and froze.

"David Attenborough Has Admitted He's 'Coming to Terms' With Memory Loss"

The article is light on details about Sir Attenborough's memory challenges and describes it as "the kind of memory loss that comes with old age."

Memory loss is not a guarantee as you age.  Sir Attenborough indicates that writing and filming documentaries is more difficult now than it has been in the past.  He's about to turn 91 and while some may be a result of that, it could also be a result of larger cognitive issues.

I hope that Sir Attenborough is not facing larger cognitive issues.

Tuesday, April 25, 2017

Fingers Crossed

Recent news has been reporting that a combination of Trazodone and DBM , anti-depressant and an anti-cancer drugs respectively, have been found to halt neurodegenerative diseases in mice and worms.  This is an amazing discovery because a disease damaging the brain has never been stopped before.

This combination didn't reverse the effects of the disease; just stopped it from getting worse and reduced the amount of brain shrinkage found in the treated animals.

The scientists at the British Medical Research Council tested 1040 compounds before these two used in combination were settled upon.  They tested them in mice which were genetically modified to have prion disease and a form of frontotemporal dementia.

Trazodone is well known in the medical community and it's safety for humans is already well studied.  As a result, the scientists are moving forward with studying this combination in humans.  Their hope is to at least slow the progression of at least one neurodegenerative disease.  

Fingers are crossed.

Monday, April 24, 2017

The Clock Face

I was running my errands this weekend when I caught Act Four of This American Life's episode 583: It'll Make Sense When You're Older.

The clock exercise is a standard diagnostic tool.  A clock face is an easily recognized and near universal object that we are taught to understand at a very early age.  The test is easy to administer and the mental processing errors are immediately obvious.

It sounds like an easy task.  It's actually quite a complex task.  The individual has to be able to imagine the clock face, recall the numbers and their positions on the clock, keep the requested time in mind, and correctly render that time on the drawn clock face.

Lyn has never been able to draw a complete clock face.  The test would not have been a useful tool for her because of this life-long inability.  She used to understand it though and could read the time from it.  I chuckle as I recall how she would try to manipulate people, particularly men, into giving her attention by convincing them she didn't know how to tell the time.  She no longer can tell the time from an analog clock.  She can still read the time from a digital clock.  

It's absolutely worth listening to because it highlights why individuals with dementia struggle with drawing a clock.  The first link above will let you listen to the story without having to sit in your car to hear the whole thing.

Thursday, April 20, 2017

Planning Ahead


What are you doing in June?
On June 21?
Do you have any plans?

Do you want to help raise funds for Alzheimer's research or participate in an Alzheimer's related event?

Think about it.

If you decide you're interested, now's a good time to register with the Alzheimer's Association's Longest Day effort.

Wednesday, April 19, 2017

Stigma and Social Media

Humans have been speaking, gesticulating and singing to and with each other for ages. While we've been writing and drawing for ages as well, the advent of social media has changed the tone of our communications.  Social media is a new comer to our methods of communication.  Our communications have become shorter and less nuanced.  It's often speedier and off-the-cuff.  We seem to value the instantaneous and un-edited thoughts.

While it can be great to get instant access to news and the thoughts of your friends and family, it can also be deleterious.  Comments are made without thought or care for how others perceive them.  There's an aggressive stance in believing you can say anything and another's feelings are their own problem with which to deal.  Anonymity allows people to feel free to be hateful without consequences.

This is having an impact on the Alzheimer's community and is already starting to increase the amount of stigma associated with Alzheimer's.

Mom's advice to "Think before you speak" still applies.

Monday, April 17, 2017

Beer and Bacon and Blues

This weekend saw the Southwest Bacon Fest in Albuquerque and Lyn felt she needed to go.  From the description that there would be beer, bacon, and Blues, it sounded like the kind of party that I would have loved too.

Lyn told me that "There were lots of people drinking!"  Despite that, she decided she needed to have a bacon cheeseburger on a doughnut for lunch.  Her assessment is that a glazed doughnut "is gooder than a hamburger bun."  She did say that the doughnut made the burger sticky and messy.

Lyn had a great time and came home exhausted.

Thursday, April 13, 2017

Reasons to be Proud

Yesterday, Lyn had a quarterly check up.  Her lab work are as perfect as a doctor could want for a patient.  Her weight has stabilized and she didn't lose more this quarter.  Her blood pressure is 114/68.    She's proud of all of that.

She took three of her paintings to show her physician.  Her doctor asked her to bring one in August that the physician can buy.  The subject doesn't matter.  Lyn's proud of that request too.

On the way to meet up with her Community Access care provider, Mom mused that she needed to figure out what to cook for dinner.  Lyn announced that she knew what she wanted and proceeded to request "A breakfast burrito with egg, ham, cheese and bacon."  Mom doesn't remember the last time Lyn knew what she wanted to eat without prompting.  Lyn stated, "I am proud dI could tell you what I want."

You know, Lyn gives a good perspective.  Sometimes, being proud of small things are great things of which to be proud.

Wednesday, April 12, 2017

Virtual Supermarket

A group of my friends who are spread across the globe have recently been sharing pictures of the isles in their grocery store, allowing us to see glimpses into things we just assume other communities have.

Grocery stores require the ability to picture where the object resides, to recognize the grouping of common objects, and to navigate the isles to find the desired object.  Financial comparisons and basic math are all involved.  All of these skills become increasingly difficult with Alzheimer's or other dementia causing diseases.

Researchers have found that virtual supermarkets can actually identify individuals with Mild Cognitive Impairment (MCI) which is often a precursor of Alzheimer's.  The virtual experiences can be immersive to the point where the individual interacts with the application as though it were fully real, allowing the system to record error or issues with how the participant engages with the simulation.

Tuesday, April 11, 2017


So, apparently, at least according to the book of faces, yesterday was Siblings Day here in the US.  These smaller holidays always trip me up.  They sneak up on me and I'm left wondering what kind of person needs to declare their love of their siblings on a specific day?  You've got so many chances through out the year to punch them in the arm and say "I love you, you big lunk."

Yeah... That wouldn't go well with Lyn.  She wouldn't know how to respond to even a gentle pop on the arm.  I suspect we'd have tears.

Should I have sent flowers?  That's a thought.  She might really enjoy a delivery of flowers that weren't intended for Mom.  I'll think on that.

As for recognizing my sister and declaring my lover for her, I think I've got that covered.  My regular calls with her are always ended with an "I love you" shared both ways.  Plus, I've been writing about my love for her for several years now.

She may be crabby and difficult most days due to the Alzheimer's, but she's my sister and I love her.

Wednesday, April 5, 2017

A Sister's Love

Imagine being 34 and knowing that you've probably lived the majority of your life.  Imagine knowing you have a genetic mutation for familial early on-set Alzheimer's and that you'll have 100% chance of getting the disease and a zero chance of surviving it.

The McIntyre sisters are facing this.  One has the mutation and the other does not.  They have already lost their mother to the disease and know what they're facing.  They've already started planning for it and know they will have to deal with one outliving the other.

In reading the above linked article, I have to commend them for their realistic approach to the disease and what they're facing.  One sister has committed to caring for the other.

Monday, April 3, 2017

Who's Old?

Mom writes:

This morning I heard her elbow "creak" and I said that she must be getting old.

Lynn:  I'm not old.  I'm a young lady.
Mom:  Yes, you are a young lady.  I am old.
L:  No you aren't old.
M:  How old do you have to be for you to think someone is old?
L:  I don't know but if you look in the "old" dictionary you can find out.
M:  (bite lip so no laughter's heard)  I can google it.
L:  No, you have to use the "old" dictionary. 
M:  OK, but is 69 old?
L:  No, you have to be a lotta old.  You aren't lotta old.
M:  Thank you but I feel lotta old.
L:  Go look in that dictionary to find out.  I know where it is, do you want me to get it for you?
M:  No thank you.  I'll look it up later.
L:  OK, look it up when you are lotta old.

So, guess I'm better off than I thought.

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.

Tuesday, February 28, 2017

The New Shirt

Lyn found a new shirt in her closet.  It was very exciting for her.

She came running in from her room, mostly dressed, to show Mom the new shirt she had found.  It's a nice blue shirt with eight stars on it forming the Big Dipper and North Star arrangement and the word "Alaska" on it.  She didn't know where the shirt came from and wanted to know if she could wear it.

Mom assured her she could wear it and was glad to know Lyn likes the shirt.

It was given to her several months ago by a family friend who had picked it up for Lyn while on a cruise to Alaska.

On the plus side, our friend should rest assured that Lyn has now been excited by this new shirt more than once.  She liked it the first time and likes it again.

Monday, February 27, 2017

A Waste of Dirt

There are times we can't help but giggle.

Lyn was on a tear on Sunday during our Skype call.

She told Mom that Mom's not allowed to flirt and that she must take her purse with her to get orange juice at the grocery.  Lyn refused to watch Mom's purse in the future and offered to go get the orange juice herself so that Mom won't be tempted to flirt.  Lyn insists she's beyond flirting and thinks that Mom's just a flirt waiting to happen.

At one point in the conversation, I had offered to help Mom research a topic.  Mom declined, indicating she had the information she needed.  Lyn then told Mom that the deacon at church had "said we have to help each other."  Lyn didn't care that he was speaking about a particular fundraising activity for the parish.  Lyn wanted me to research on Mom's behalf.

She wrapped up by telling me that the construction around the city is just "a waste of dirt!"

Mom and I spent more time covering our mouths to keep Lyn from seeing us giggling than talking.  Lyn no longer realizes that when we cover our mouths, we're hiding our grins poorly.

Wednesday, February 22, 2017

Waiting is Hard

Lyn was supposed to go to day hab on Monday.  Mom knew they needed to be home in time for the inspection.  The inspectors had told them they would arrive "sometime after 1pm."  Mom told Lyn she could pick her up from day hab at 12:30 and they would be home in plenty of time.  It made no sense.  Lyn couldn't understand the schedule change no matter how she thought about it.

Lyn decided she would not go to day hab.  She opted to stay home.

The day be came infinity long and challenging as a result.

Lyn played a few games with Mom.  She paced.  She cleared off her dresser and decided to get rid of her jewelry box and its contents.  As the afternoon wore on, she became more confused and lost.

She can't cope with schedule changes even when they are her idea.

Tuesday, February 21, 2017

Spot Check

On Friday, the State pulled files from one of the agencies that works with Lyn.  Our family's file was pulled for a spot check.  It has been pulled for inspection at least 5 times before.

These inspections involve representatives checking the files with the agency and seeing if everything is in order.  Has it been filed on time?  Are the monthly reports all there?  Are any necessary forms missing?  If there was an incident noted in the monthly report, is there a separate incident report?

They also visit the residence of the client.  They look to see if the client is living in a safe setting.  Does the client have a designated personal space for their belongings and their sleeping arrangements?  Does the client have the ability to go into another room for privacy?  This is not just about the physical space such as does she have her own room.  It is also about permission.  Does she have the right, the self-determination to decide to seek privacy and does the care giver respect that decision or are her rights as an individual limited by those around her?

The staff look for the notebook that is to be kept at the residence.  There are particular forms they look for there and they look to see if the daily activity log is up to date.  They will (and did) ask to see any dates which have not yet been submitted to the agency.  Mom was missing a printout of a single policy.

They also look for medical care resources.  What medications is the client on?  Are they up to date?  What allergies does the client have?  Does the care giver know and understand the risks of allergic reactions up to and including death?  Does the care giver know what to do if the client has a seizure or other medical emergency?  Does the care giver know how to administer or over see the taking of medication?  Does the residence have a first aid kit and is it properly filled?  Mom had a tube of expired neosporin in her first aid kit.  She indicated that she wasn't surprised it was expired because is it not a product they use.  That raised some eye brows.  Mom explained that she uses aloe instead and the response was not positive because aloe is not on the approved list of care options.

The State inspectors had questions for both Lyn and Mom.  Their questions were all answered in detail and at least one of the inspectors was surprised by some of the answers.  When they asked about "any noticed changes in the past year," Mom indicated that the Alzheimer's had progressed.  One of the two was familiar with Alzheimer's and the disease's progression.  When they asked if she lost weight, Lyn proudly exclaimed that she continues to loose weight.  One inspector was a little concerned about Mom doing something to Lyn to make her loose weight and Mom explained that it is a side effect of the Alzheimer's because the body is forgetting how to absorb nutrients.  Mom noted that the recent visit to the audiologist confirmed a 95% hearing loss in the left ear (Alzheimer's origin) and the physical revealed a near total loss in the ability to smell (also a result of Alzheimer's).

Overall, the inspection went well.  Lyn was cooperative.  Mom might be dinged on the two minor and easily corrected issues.

Monday, February 20, 2017

Designing for Alzheimer's

Mom told me about an article she read in the paper and I thought you might like to hear about it.

The article was about an interior designer who is trying improve the lives of Alzheimer's patients by providing tips which are easy to implement and are low to moderate in cost.  For example, to reduce bathroom accidents, paint the wall behind the toilet a color which increases the contrast between the toilet and the space around it.  This is a very similar idea to putting the person's food on a colored plate.

The design company is called Design Prescription.  You can read a about her suggestions in detail at her blog.  Take a look at her work.  It's very interesting.

Tuesday, February 14, 2017

Steve Harvey Causes Trouble

Mom writes:

Well, Steve Harvey has done it again!!

I was watching him this afternoon.  It was his Valentine Show.  He was setting a woman up with a date.  The man had been there previously and was not picked.   So, he was brought back to have a date with a woman who lost 105lbs.  He came out shirtless.

Lyn was sitting at the computer when I said "wow".  Never on purpose would I say it.  Of course I was looking at her.  She looked over but whirled back to the computer so fast I thought she'd twist her neck.  No comment.

A few min later he brought out 4 men with gifts for everyone in the audience.  Of course these guys were also shirtless.  I made a comment about the roses one was holding.  Yes, she looked and muttered "unappropriated" again.  I asked if she thought the roses were pretty and if the guys were cute.  I know she muttered something but I couldn't hear because I was laughing out loud.

I told her that she was funny.  "Yes but they need shirts because we don't need to see that."  By the time I quit laughing she had stormed out of the room and back to her room.

I asked if she was ok. "Yes, but I don't think we should see all that."  Mad again because I was laughing again.  Poor kid, I couldn't help it.

Monday, February 13, 2017

Painting Up A Storm

Lyn's Community Access care provider has introduced her to painting and Lyn LOVES it.  She's been exposed to crafts for most of her life but I don't recall if she's ever really painted before.  I know she actively avoided it when our grandparents wanted us to scrape and repaint their white picket fence every few years, but that's different.

Together, Lyn and her care provider decide upon the subject of the painting.  Her care provider will look it up online and then roughly sketches out the shape on the canvas.  Lyn takes over at that point. She selects and mixes all of her colors.  She chooses what tools she will use and she then starts painting.  She might work on a painting over the course of a couple of weeks.  You can really tell the difference between when she puts in a few hours and when she dashes one off.

She's also started selling the paintings and is very proud of herself.  Here are a few of her recent works.

You can see how happy this activity makes her.  (You can also see how much weight she's lost.)

Mom has the sunset.  

This is the Sanctuary de Chimayo.

This sunset is over the Three Sisters volcanos which are to the West of Albuquerque.  This painting is en route to me.

Mom says the shading on the water was excellent.  Lyn hated painting the water and has declared she's never painting water again.

These two are her most recent works.  Mom bought the tree as we had our Skype conversation.  The paint was still wet when Lyn came home.  The flower was already promised to someone else.  Actually, all of her paintings to date have been claimed.  

Considering she's new to the art and has an intellectual disability and Alzheimer's, she's pretty impressive.  She's always had an eye for color.  

Wednesday, February 8, 2017

Modifying Tests

I'm fighting a cold and am going to totally cop out by pointing you to an NPR story.

I encourage you to read or listen to Monday's story on a prion test which is being modified to detect Alzheimer's and other brain diseases with misfolded proteins.  It's quite interesting.

Prion Test for Rare, Fatal Brain Disease Helps Families Cope

Tuesday, February 7, 2017

The Hard Hat Edition

My friend in Italy has been amused by the tales of Lyn and the shirtless firefighter calendar.  When I mentioned I had tried to find a picture from an Italian calendar to include in yesterday's post as proof that Italians do understand, she told me that "shirtless men are a national treasure" and sent me this picture from a 2013 calendar as proof.

Mom and I decided a Skype call was necessary so I could document Lyn's reaction.

We connected and Lyn told me about the day's activities before I encouraged Mom to look at the picture send by my friend in Italy.  Lyn is calm and happy at this point.

Mom accesses the picture of the nearly nude man and Lyn gets a good look at it.

You can see the disapproval begin and it is swift.

Mom gets The Look with bonus over the glasses "I'm looking at you!" action.

That look right there was worth it all.  At this point, Mom and I are giggling like fools and I am not spared her wrath or chastising.

We were told to shut the picture down.  We were told it was wrong for him to not have his shirt or pants on.  When we pointed out that he has a hat, Lyn said "He NEEDS a hat!"  I asked Lyn if the man was handsome.  She stopped cold.  She didn't want to answer but eventually conceded that he was "cute but needs to be dressed."

She also told us that we've had our "share of that."  We're not entirely sure what she means but it was related to me being married.  Apparently, since I'm married I'm not supposed to even look at picture of a man with his shirt off.  As for Mom, Lyn has told her she's too old to be looking at such pictures.

Does this stop things?  Nope.

I just tell them about the man who I nearly physically bumped into while shopping this weekend and how he invited me out for coffee.  I declined, explaining that I'm married.  Lyn wanted to be angry with me over that but couldn't because I didn't go out on a date.  She says I have to only date my husband (agreed) and was miffed when I said "if he dies, I know I have options."

She has options too and declared that she's done with dating.

Monday, February 6, 2017

Totally Worth It

This fireman calendar is getting more mileage than we ever anticipated.

Mom picked up a second calendar which she's sending to me so I can forward it to my friend in Italy. Lyn is not pleased.  Lyn is convinced my friend in Italy won't like it because "they don't do things like this."  I'm not sure that's the case but we'll let Lyn believe what she wants.

On Sunday, the firefighters were to be at the auto show selling their calendars.  Mom offered to take Lyn so they could get the calendars autographed.  The Look was out in full force.  Lyn was disgusted that Mom would even suggest such an activity.

Lyn tells us it is not appropriate to laugh about the men being without shirts.  She's very serious and we should take the situation as seriously as she presents it to us.

That is never going to happen.

Wednesday, February 1, 2017

No Dumping Allowed

When I watched the Alzheimer's documentary last week on PBS, one of the hospital staff interviewed mentioned a problem of "granny dumping."  Granny dumping is the practice of abandoning an elderly person with dementia at a hospital, leaving them to be cared for by charity.  The individual's dementia is far enough along that they are no longer able to identify themselves or their care givers.

The practice is not frequent but happens in many places around the world.  Japan is apparently seeing an increase of it recently.

On Monday, while reading through the BBC's World news, I came across another reference to granny dumping.  In this case, a US family (mother and son) flew the husband/father to the UK and left him there alone while they returned to the States.

Caring for an individual with dementia is emotionally and financially draining.  I understand the desire to run away and remove yourself from the obligation of caring for someone.  Heck, my own kids cause me to feel that sometimes and I, at least, have the hope that one day they will be independent humans successfully being part of society.  However, I don't think I'll ever understand what it takes to actually walk away, leaving a vulnerable person alone.

Tuesday, January 31, 2017

How "Not Appropriated"?

How "not appropriated" was the calendar?

So glad you asked!

This is the face of disapproval that we get from her.

Monday, January 30, 2017

STILL Not Appropriated

Saturday was hysterical.

Lyn knew Mom wanted to purchase a 2017 calendar and was determined to stop it from happening.  Lyn told me she "needed to get onto Mom."  She started before Mom was even out of bed and kept it up until the end of the day.  I asked if Lyn "needed or wanted" to correct Mom.  Lyn wasn't sure but she did indicate she enjoyed getting onto Mom about the calendar.

Mom felt it was her civic duty to purchase the calendar to support a local effort to find animals homes. Lyn feels very strongly that the desired calendar titled "Albuquerque Firefighter Pet Calendar" was not appropriated (Lyn's word) because so many of the firefighters pictured in the calendar are shirtless.

Mom has looked over the calendar.  She's offered to take down the 2017 calendar given to her by a friend who does a lot of wildlife photography.  Lyn objects to that idea.

Mom has offered to send me the calendar because I don't have a 2017 calendar much less one with firefighters, dogs and cats.  There's even a picture with a bunny.  I like this idea but Lyn objects.  She objects because she says my husband should not be forced to look at this calendar.  She offered to send me a calendar in her room that doesn't have shirtless men.

I offered to send the calendar to a friend in Italy.  She's a single lady who appreciates the efforts of firefighters.  Because she's single, there's no concern over a husband being forced to look at the calendar.  Lyn couldn't argue with that point but maintained that the calendar was not appropriate for anyone.

Mom and I spent the majority of the conversation laughing as Lyn rolled her eyes at us, gave us withering looks, and called our sensibilities into question.  She strongly maintains that she's the only one with a well-formed thought in her head and the calendar purchase proves it.

Thursday, January 26, 2017

Alzheimer's on PBS

Did you catch the documentary "Alzheimer's: Every Minute Counts" on PBS last night?  It sounds the alarm of the impact Alzheimer's is about to have on the US.  With a new case of Alzheimer's diagnosed every minute in the US and every 4 seconds world-wide, the approaching tsunami of patients will overwhelm our medical resources.

A successful treatment is desperately needed.  It is needed to help ease the anxiety and confusion of the patients with Alzheimer's.  It is needed to help ease the burden on the care givers.  It is needed to help ease the drain on the economy.  From the individual level to world-wide, treatment is needed.

If you did not catch it, you can at least view some of the clips which have been made available.  Hopefully, the documentary will be aired again soon or made available online in its entirety.

In the meantime, you can help fund research to find a cure.  I am.  My husband and I have established a monthly deduction to go to Alzheimer's research.  It's not a lot, but over the course of the year, it will add up.  Combined with other contributions, it can have a big impact.

If you're considering supporting Alzheimer's research, here are some links to organizations you can consider.  Do some research and choose the organization(s) which make you most comfortable.

Alzheimer's Association
Cure Alzheimer's Fund

Here's the list of Alzheimer's charities rated on Charity Navigator.

Wednesday, January 25, 2017


Lyn still bowls regularly and her scores are still consistent.  She'll usually have a good start with a game in the 130's followed by a game of 100 to 110 points.  If she plays a third game, she rarely tops 100.  Her low scores are more than me on a good day.  Then again, she bowls weekly and I bowl annually.

Last week, she went bowling and played two games.  Her first was 130 (consistent).  Her second was 198!!  I think that's one of the best scores she's ever done.

She had Mom call our Uncle to challenge him to a competition.  Mom offered to buy him a beer at the bowling alley.  He says he'll need two.

Lyn had Mom update me and later gave me explicit instructions that my husband needs to start practicing.  She intends to beat us all soundly when we visit this summer.

She will too.

Tuesday, January 24, 2017

A&E Investigation

The A&E report incident is currently under investigation.  The investigator came out to the house and spoke to Mom and Lyn.

Prior to the appointment, Mom and Lyn's team reminded Lyn that it is OK if she couldn't remember what happened.  They told her to just tell the investigator whatever she could.   When the investigator was there, Mom introduced him and then transitioned herself out of the conversation.  She left the room so they could speak in private.

Prior to Mom's departure, the investigator assured Lyn that there was no right or wrong answer and the he wanted to know Lyn's thoughts.  After he was done speaking with Lyn, he spoke for a few minutes with Mom.  Mom had printouts from a conversation she had with the respite care provider which happened 5 minutes after the incident.  Mom had asked what had happened.  The respite provider gave her account of the incident.

We know the respite provider is one of the individuals to be interviewed by the investigator.  Lyn's community access provider may also be interviewed.

I will let you know when we have the findings from the investigator.

Wednesday, January 18, 2017

In Purple

A package from Mom and Lyn arrived yesterday.  In addition to some delicious baked goods (always a welcome gift), there was one of Lyn's recent paintings.

At some point, while in a craft shop, she spotted a wooden cross and decided I needed it.  She painted it in a couple of shades of purple before drizzling the metallic puff paint all over it.

She's already asking where I will hang it.  I honestly answered that I don't know where it will hang.  It's not my style.  She's been insistent that I need a cross and we have no idea why.

Mom has suggested that Lyn paint me a picture.  Lyn offered to sell me one of her paintings and was quite put out when Mom told her that I should get one for free.  She's not having it.  If I want a painting other than the cross, I'll have to pay.  I don't blame her approach and got a good laugh at how openly mercenary she can be.

Tuesday, January 17, 2017

Who Takes the Blame

When we were kids, Mom used to ask if there were a couple of additional children living in our house named "I don't know" and "It wasn't me!"  These were the most common answers we gave when she asked who was responsible for whatever misdeed was being investigated.  We, being normal kids, actively looked for ways to get out of trouble.

These days, "I don't know" has been replaced by "I don't remember" and "It wasn't me" has been replaced by Nikka.

Alzheimer's is an interesting disease.  Lyn knows that her brain isn't working right.  She's described it as "jumping all over the place" or "flipping inside out."  She seems to recognize that her anxiety and shadowing of Mom is abnormal.  She's shadowed before but it has become nearly constant ever since the incident just after Christmas.  She is intent on keeping Mom or her community access provider in sight at all times.  With Mom, this now means that Lyn actively interjects herself into the act of going to the restroom.

If you ask Lyn what she needs, "I don't remember" is now her most common response.  Lyn no longer remembers details about anything.  She does remember feelings, particularly strong ones.  Unfortunately, her strongest emotions at this point are in the fear and anxiety category which cycles into her desire to shadow.  She's looking for assurance that everything's OK.  She knows enough that she doesn't trust her own assessments and is looking to others for added assurance.

If she proactively offers a reason for her shadowing, the chances are very high that she'll blame Nikka.  Nikka wonders where Mom is and when she'll be done in the restroom.  Nikka wonders what Mom is doing in the kitchen or who is on the phone or who wrote what in an email.  Lyn offers Nikka up as a potentially believable excuse.

Fortunately, Nikka is one of the most patient beings I have met.  She stands there and wags her tail as if every word Lyn says is 100% true.  Nikka's not one to correct Lyn.  Both Nikka and Mom know the truth and that correcting Lyn will just hurt Lyn's feelings.  So, with a pat on the head, Mom lets Nikka know that she's in on their complicity in helping Lyn manage her daily anxiety.

Monday, January 16, 2017

Safety Plan

The State jumped on the A&E Report within 24 hours of receiving it and has already reached out to start the investigation process.

One of the things they have requested is that the agency where the incident occurred provide a safety plan for keeping Lyn safe.  In this case, the plan should be exceptionally simple.  The individual who cornered Lyn should have ZERO contact with Lyn.  If Lyn is there, that person may have to go to her office and close her door or perhaps leave.  That person should not speak to or in any way to engage with her.

The inquiry by the State has caused a couple of people to get all aflutter.  There have been calls seeking more information by individuals who are concerned (read: being nosey) but who are not involved with the case.  These callers are being directed to Lyn's case manager.  If they need to be brought up to speed, it is the case manager's job to do so; not Mom's.  Once the report was filed, the who process is out of Mom's hands.

Wednesday, January 11, 2017

A&E Report

Last week was a bad week for Lyn.

She has been expressing an increasing desire to no longer work with the respite care provider who has worked with her for about three years now.  Lyn hasn't been happy with doing activities that the care provider wanted to do instead of doing the things she wants to do such as bowling.  Mom and I have been talking about it and wanting to keep an eye on things, knowing that we would have to consider reducing the hours or even ending the work with the respite care provider.

Lyn's Alzheimer's makes it very difficult for her to exercise discretion.  She mentioned her feelings to an employee at day hab.  That employee broke protocol and disclosed Lyn's feelings to the respite care provider.  The day hab employee was wrong to tell the respite care provider.  First, they are not colleagues.  Second, any change in hours or service is between the client, the care provider, and the case manager.

Lyn's community access provider needed to drop off some paperwork at the location where the respite care provider works.  She and Lyn stopped by on their way to their activity.  The respite care provider called Lyn into her office and partially closed the door, starting a conversation which seemed benign by asking how was Christmas.  A couple of sentences later, she closed the door fully, cutting Lyn off from her community access provider so she could ask Lyn why Lyn had a problem with her.  Lyn panicked, thinking she had done something wrong and feeling completely intimidated and afraid even though she was not being physically harmed or yelled at.  The conversation was brief but Lyn came out of the room in tears, shaking, and asking to go home.  The community access provider reported the incident and alerted Mom.

It took at least 48 hours before Lyn began to calm down.  We now see a new behavior from her.  When she's shut down, she stands stock still and won't make eye contact.  That lasted for those two days.  After that, she started shadowing Mom to the point of not allowing Mom to go to the restroom alone.  Poor Nikka has been blamed for everything including needing to know where Mom is at every moment.  For several days, Lyn's sleeping was greatly disturbed and her general emotional outlook has been very down.  She doesn't know how to process the intimidation she felt.

Mom reported the incident to Lyn's case manager and now an A&E (Abuse and Exploitation) report is being submitted to the State.  The report should have been made the day after the incident but Mom was still dealing with the fall out and trying to piece together information, including from the respite care provider.

Lyn will no longer work with this respite provider who will not be allowed additional contact with Lyn.  We've done a tremendous amount of trying to assure Lyn that she did nothing wrong.  The person in the wrong was the respite provider.  She should not have isolated or questioned Lyn.  She knows Lyn's diagnosis and even though she's not accepted the scope of the changes, she violated a number of policies in how she handled the situation.  She should have directed her questions to Mom.  She should not have removed Lyn from her community access provider.  She acted in her capacity as a service coordinator and abused that role as well.

So, the State will now investigate.  They will speak with the two providers, Mom, and Lyn.  They must speak with Lyn without Mom so that they are assured that Mom is not leading Lyn to her responses.  If the State determines the A&E report to be unfounded, it will drop the investigation.  If it finds the report to be substantiated, then the person could be sent for additional training or even face termination from employment.

It's deeply troubling to see the impact and trauma this incident has caused Lyn.  The respite provider has changed her story a couple of times, in writing even, to make it sound like she's been the victim of Lyn casting aspersions against her.  She even approached the community access provider who was with a different client at the time to try to discuss the incident and did so in a public venue.

Mom may not be hoping that the respite care provider looses her job over this.  I am not so magnanimous.

Tuesday, January 10, 2017


Last week, I posted a little reminder that a person with dementia can be experiencing a different reality than the rest of us.  I'd like to expand upon that a bit today.

Grandma was in the nursing home in the two years or so before her death.  One day while living there, Grandma started accusing Mom of stealing her clothes.  Grandma was dressed and Mom could show her the clothes she had there in her room.  Grandma didn't believe her.

Another time, Grandma accused Mom of stealing her jewelry, particularly her Thunderbird necklace that my Grandfather had given her in the 1930s.  Mom assured her that the necklace was at home, safe.  Grandma demanded that Mom put all of the jewelry in a bag and bring it to her.  Mom did and a few days later, at her next visit, Grandma complained of the staff not disposing of her trash.  Mom looked over to the corner of the room and recognized the bag with jewelry.  Mom offered to dispose of it for Grandma and took it back home.

Both of these accusations are pretty common, particularly with Alzheimer's.  When this is happening, the person honestly believes the accusations they're leveling.

Dementia can be caused by other conditions than just Alzheimer's.  In a recent exchange with a new friend, I learned of a situation with her step-father who suffered a stroke which caused his dementia.  I have her permission to share.

In his reality, he levels accusations that someone has injured him.  He has claimed that he's been shot in the head, had his ribs broken and most recently accused his wife of breaking his arm.  This most recent incident ended up having the police involved because the couple were checking into a hotel on their way home from a holiday visit when he started screaming.  The police responded and the man continued to insist his wife had broken his arm.

Fortunately, he was wearing a shirt which said "Pardon me.  I have dementia."  His wife was not detained while medical attention was given to the man and it was quickly determined that his arm was not broken nor in any way injured.  In his case, the family and his physicians have determined that his accusations correlate to injuries he suffered in a motorcycle accident 50 years ago.  He doesn't remember the accident any more due to his stroke but they believe his bones ache sometimes and that prompts him to believe that someone has injured him.

The dementia impacts the person's ability to process what they are experiencing.  If your reality is determined by what you're experiencing or how you're interpreting what is happening, then yes, their reality can be quite a bit different from yours.

Monday, January 9, 2017

First 2017 Adventure

It was a cold start to the weekend in NM with enough snow and ice to shut down day hab and cause local officials to encourage residents to stay home.  Mom and Lyn were safe and snug.  For some reason, the winter weather prompted them to go on an adventure on Sunday.

Sunday morning saw them bundled up for a trip out to the Bosque to see what birds and other wild life they could spot.  Why would you go to an outdoor wildlife reserve in the middle of Winter?  The Bosque's residents change with the seasons.  The lack of leaves on the trees allow you to spot birds which you might not otherwise spot.

Lyn was quickly able to spot three Bald Eagles, a Golden Eagle, and three Mule-Eared deer.

They also saw Snow and Canada Geese as well as several large herons.  Lyn was happy.

The snow and ice from Friday had melted off.  It was a cold but clear day which made for a nice outing.  They weren't up and out as early as the birders with their very large cameras.  Some of them had been set up by 4:30 AM.  Lyn was impressed by the large sizes of some of the lenses they were using.

Wednesday, January 4, 2017

Your Reality My Reality

If you're working with someone who has Alzheimer's or another disease which causes dementia, you need to remember this one piece of information.  The other person's reality is NOT the same as yours.

I cannot stress this enough.  You are not dealing with someone who plays by the same social rules as you.  The internal governor is broken.  The person cannot process their experiences or their emotions in the same way you can.  Heck, with the progressive nature of the disease, they may not be able to process in the way that they could have a year ago.

So, if you're caring for someone with Alzheimer's and something hurtful is said, you MUST consider the source.

It is often the disease talking.

Tuesday, January 3, 2017

Follow Up on Solanezumab

In 2012, we learned about Solanezumab by Eli Lilly which was in phase III trials.  The results at that time were mixed and the company decided to move forward with testing to determine if there was any clinical benefit from the drug.  

Late last month, it was announced that Solanezumab additional trials have failed to change the progression of Alzheimer's in human subjects.  An additional 2,000 patients were tested and no slowing of the disease was noted.  In other words, Solanezumab had no impact.  

Solanezumab was targeted to clear accumulations of amyloid beta.  Several other failed treatments have also focused on the same symptom of Alzheimer's and, to date, none have succeeded in humans.  

So, is the story of Solanezumab finished?  Not yet.  Some improved cognition was noted.  Some theorize the dose tested was too low.  Some theorize that the patients tested were too advanced in their Alzheimer's disease to gain benefit from the drug.  Additional testing is scheduled to focus on individuals who are at risk but are not yet symptomatic of Alzheimer's.  

Monday, January 2, 2017


Unfortunately, soiled underpants are a reality with Alzheimer's.  If this is TMI for you, then feel free to click away.

We'll wait.

Still here?  Ok, good.  This may be an uncomfortable conversation for you, but if you're dealing with the care of someone with dementia, it is something that should be discussed.  If it helps you, I have a cocktail at hand as we talk.  Don't tell Lyn.  She'll get mad at me for both the topic and the cocktail. She may even threaten to re-educate me again.

Incontinence is not a guaranteed dementia event.  However, it is common enough that we should address it.  It can be either urinary or fecal incontinence or both.  The person may have it only a few times or may loose all ability to control their bodily functions and need specialized garments and care.

I seem to recall Grandma needing Depends undergarments due to frequent urinary incontinence and a chronic Urinary Tract Infection.  Lyn occasionally experiences some urinary leaks at night during her sleep.  They're not major and do not happen nightly.

Jim Breuer, the comedian, has spoken of his need to hose his father down after a particularly explosive bout of fecal incontinence.  He also indicates the clothes were not worth salvaging and needed to be burned.  Mom didn't have to resort to that level of intervention recently.

On the day after Christmas, upon returning home from eating lunch out, Mom heard Lyn's stomach rumble as if she was hungry.  Lyn went into the bathroom and after a few minutes, Mom heard "Oh no."  Lyn had soiled herself.  Mom asked Lyn to bring her the soiled garments and take a bath to clean up.  Mom heard a second "Oh no" and discovered a bit of mess on the floor of Lyn's room.

Fortunately, the accident happened at home and Mom was able to redirect Lyn in such a way that Lyn didn't feel mortified by the event.  Unfortunately, this may become a more common occurrence and additional toileting prompts may be required to avoid a public accident.

Additional Information:
Clinical Stages of Alzheimer's (includes information about incontinence and expected stages)