Wednesday, September 30, 2015

Shedding Her Inhibitions

Mom writes:

Well, end times are truly here!

In the not too distant past she NEVER came out of her room or bathroom unless completely dressed.  Lately, she got to where she would come to the hall or living room asking for me to hook her bra.  Now she'll come into my room for that.  Doesn't matter if blinds are up, windows open.  Well, this morning she walked over and stood in front of window and sliding door to look at a balloon in her bra!!

It was difficult not to laugh out loud.

Tuesday, September 29, 2015

A New Ted Talk

A new Ted Talk has popped up.  I haven't had a chance to watch it yet but I'll put it here so you can watch it today.  I'll try to watch it tonight.


Monday, September 28, 2015

Depends

Towards the end of last week, Lyn came to Mom and announced that she needed new panties.  She only had one pair left.  Mom had just done Lyn's laundry two days prior to this exchange and was a bit surprised by the rapid decline in available underwear.  She checked Lyn's drawer and found one pair and an unopened package of new panties.  Instead of opening the package and putting them in for the wash, Lyn had just put them in her drawer.

Mom then went to Lyn's laundry basket and found all of the others.  Lyn had changed her underwear each time she changed her clothes (up to three times a day) and some smelled of urine.  Mom had realized that recently she had started to smell traces of urine when they were in the car together.

Mom asked Lyn if she was having little accidents and Lyn denied it.  She was defensive about it.  The evidence was at hand and it was pointless to argue with her.  So, Mom took a different tactic and pointed out that sometimes "when adult women sleep very soundly they may not realize the need to go to the bathroom."  Yes!  Lyn immediately agreed that happens.  It is hard to judge what is just a response to a suggestion and what really isn't.  However, the evidence was at hand that Lyn is starting to have issues with incontenance from time to time.

Mom pointed out that this happens to enough adult women of a certain age that there are commercials for disposable nighttime panties.  Would Lyn be open to trying them?  Yes!  She is very open to trying these nighttime garments and made a point of telling me about them during our Skype conversation yesterday.  Mom had sent me an email about it earlier in the week.  I was glad for that because when Lyn raised the subject, I was able to support Mom's suggestion while making it just a normal part of life.

Friday, September 25, 2015

Recent Drug Developments

The news surrounding Alzheimer's and drugs this month has been very interesting.

Salsalate, a drug related to aspirin, may provide a new hope for Alzheimer's.  The interesting thing is that Salsalate has been known of and in use since the time of Hippocrates.  It's an oldie but a goodie. Salsalate helps reduce inflammation which is why it has been used to treat arthritis.  In at least one mice model, there is evidence that Salsalate clears Tau from their brains.  If that can transition to humans, than that's a good thing.

Alternately, donepezil, which is used to treat Alzheimer's, appears to build bone mass.  Scientists are now looking into using it as a treatment for osteoporosis.  

Finally, a combination drug called dextromethorphan-quinidine appears to reduce aggression and anxiety in Alzheimer's patients.  This is an off-label finding.  Dextromethorphan-quinidine is normally used to treat pseudobulbar affect in which individuals may not be able to have their external emotion expression match their internal emotional feelings.  This finding isn't as surprising to me as the donepezil finding.  Individuals with pseudobulbar affect have some sort of brain damage, injury or neurological disorder which makes emotional regulation difficult.  It is also not an antipsychotic which can pose particular risks for side-effects in Alzheimer's patients.  If it is approved for use in easing Alzheimer's patients' anxiety and aggression, it may be a safer option.

Thursday, September 24, 2015

Mushroom Music

When this picture of Lyn was taken, she was just a few months old.  The mushroom was a music box.  I remember it sitting on the shelf in our room for years.  It was destroyed when the house burnt down.

In this picture, Lyn was whistling.  It was the first time they had been able to grab the camera to get a picture of her doing it.


Tuesday, September 22, 2015

A Toy

On Monday, I received the following email from Mom:

She's watching her new favorite tv program, Family Feud with Steve Harvey.

The question was "What would you hate to discover that your grandma's hiding in her bed stand?"  One woman answered "a sex toy."

"WHAT?  What is that?"  I just said "a toy" and went on with reading.

"That was a dumb thing for her to say cuz grandma doesn't play games."  For some reason I didn't think I needed to say anything more. Now she's concerned that I have "a bad cough."

Friday, September 18, 2015

They Help Me

"They help me."  This is the sole reason Lyn gave for pretending to not see the rug when she and the staff were practicing getting on and off the van.

Why did she want to pretend to not see the rug?  Because the staff helped her.  Because she knew that by pretending to not see it, she could get their attention focused on her a bit longer.  Because she likes being the center of someone's attention.  Because it feels good.

Did the staff know she was being manipulative?  Probably not.  They may not have been watching her face closely or understanding the difference in what her expression was telling them.  Is that their fault?  Not at all.

Humans are adept, even from an early age, of figuring out ways to manipulate each other.  It's just that, for the most part, we teach each other to be more upfront about trying to get each others' attention or having our various needs met.  We teach our children to say "Excuse me.  May I ..." when they want something.  We teach our partners how best to communicate the need for intimacy.  Typically, we favor open and forthright requests and eschew passive aggressive actions.  We get angry when we encounter adults using them.  As the parent of a teen, my current operating theory about why adults and teens find themselves butting heads is because teens prefer passive-aggressive approaches like the side-eye glare or the Eye Roll of Doom which so clearly conveys "Moooom! You're such an imposition upon my very busy texting schedule.  Geez!"  (Not that I've encountered that at all.)

Before we can master the skills needed to present our requests as one adult to another, we use those skills which are closer at hand.  We manipulate.  Are babies manipulative?  That's a controversial topic and I'm not convinced that an infant crying is an attempt to manipulate you.  They have a need and they only know of one way to try to get it met.  However, by the time they become toddlers, they definitely are learning patterns of behavior which are reinforced when they get what they want.  Perhaps instead of always saying "Please" for a cookie, the child has received the positive reinforcement of getting a cookie when they make a particularly appealing expression and use a cute babyish voice.  Perhaps the child gets what they want by throwing a full-blown tantrum until the harried parents give in.  It comes down to learned patterns of behavior which have received positive reinforcement over time.  Heck, even our dogs and cats learn to manipulate us.

Lyn is no different.  She may be intellectually disabled and suffering from Alzheimer's, but she can still seek to control other people around her to her benefit.  I have seen people assume that her disabilities make this type of behavior impossible.  I believe it is a basic skill that the vast majority of us have.  She can be obvious about it like when she says "Those sure are my favorite cookies" as a request.  She can also be subtle about it such as pretending to not see something.  Who's to say she didn't see the rug?  Who would think to question that?

How can you tell if she's being honest with you or trying to manipulate you?  Her eyes give her away.  If she's being honest with you, there's a loss and a dullness in her eyes.  There's confusion there now too.  If she's trying to manipulate the situation, there's a presence, an awareness in her eyes.  She is engaged in the moment and enjoying it.  She may be a bit more charming than usual.  If you're a man, she'll be overtly charming.  Once you know what to look for, it is easy to spot if not glaringly obvious.

What do we do about it?  Well, we try to correct the behavior or point out that she's capable of doing something independently.  We do want her to keep trying because if she relies on others for everything, her disease progression will increase its pace.  I know Mom gets angry with her and even embarrassed.  Mom will got to bat for Lyn in an instant and on many occasions over the years, it has turned out that Lyn was fabricating stories and working herself into a lather over nothing.  She did it at her current day hab, at her previous day hab and even at work when she worked for Wendys.  Mom is embarrassed when this happens because she's tried to protect Lyn only to discover it is Lyn who is causing the trouble.

At this point, we know Lyn needs help.  We know believe the panic attacks are real.  We also know that she enjoys when she's getting the attention and her "They help me" is her motivation.  It is a fine line to walk and trying to navigate that while recognizing that her reality is different than ours complicates things.

Will there come a time when she won't try these behaviors?  Perhaps but she'd have to be non-verbal first.  Grandma was verbal to the end and could still lay it on thick even a week before she passed.




Thursday, September 17, 2015

Manipulation Tactics

Yesterday at day hab, the staff practiced with Lyn getting on and off the van.  Mom had sent along a small, light color rug to serve as a visual taget as Lyn stepped down from the van.  Lyn told the staff she could not see it.  She claimed to see only black.

When Mom got Lyn home, she took a second small rug and held it up, asking Lyn what she saw.  Lyn very clearly saw and desccribed the rug.  Over the course of the evening, Lyn indicated that she had seen the rug at day hab.  She pretended to not see it because she likes when the staff helps her.

She is manipulative. She always has been.

She is having panic attacks and she is genuinely frightened.  However, in a situation she perceives as controlled and safe, she wll work to have the attention on her.  It is a form of feeling valued and connected.  It allows her to feel a sense of control overserself and her environment.

It is also incredibly maddening.  It is hard fo the rest of us who do not live in her reality to have patience with behavior like this.  Grandma was the same way.  She could charm one moment and then spin on a dime to be ugly or vindictive.  Lyn did exactly that  when I was on the phone checking on them.  She was calm until Mom turned the channel on the television at which point Lyn got ugly.  If Lyn follows Grandma's pat of deterioration, she will continue to try to manipulate when she can.

Lyn is taking a rug again tomorrow and they will practice again.  Given today's outbursts, I suspect she will see the run just fine.

Wednesday, September 16, 2015

They are Working on it

The various folks who work with Lyn had an email exchange in which ideas were shared to identify ways to help Lyn feel safer on outings.  Several mitigation strategies have been suggested.


  • Have Lyn wait on the van until everyone is off 
  • Have a staff member escort her off the van while giving her verbal cues
  • Add a contrasting color tape to the van steps to highlight where they are
  • Have a contrasting color mat placed on the ground to give Lyn a visual target to focus on
I believe they are looking to see if adding the contrasting color tape is a possibility.  For the rest of the suggestions, training and practicing will have to take place, but they are workable.  We won't know f any of these suggestions will prove effective.  However, they are worth trying and if any of them help, they may extend her ability to participate in the day hab activities.

One thing that we all need to remember is that Lyn is not trying to give anyone a hard time when she asks for help or melts down.  This is not her trying to just get her own way.  Yes, it can be perceived to be controlling behavior.  She is trying to control her environment so that she can figure out how to safely navigate it.  She is not giving the staff a hard time.  She is having a hard time.

Tuesday, September 15, 2015

Panics in Public

Lyn's been having increasing difficulty in handling day hab outings.

We've known she's not able to process plexiglass at  the mall.  Day hab has been advised that she should not be taken to the mall.  Going even to the first floor causes her anxiety.  The mall was redecorated and a primary decorating element is plexiglass.  Even the stairs are plexiglass.  She cannot see it and her brain cannot process it.  It induces full-blown panic attacks with tears, shakings and an inability or lack of desire to stand.  A recent outing was scheduled to be to a doughnut shop.  At the last minute, a trip to the mall was added.  The staff took her to the second floor and she melted down.  She asked for help and at some point, someone stated that she needed to stop her games.

In a another incident which happened just last week, Lyn started to panic getting out of the day hab van.  She called to the day hab staff three times for assistance and received none and a another full panic attack ensued.  We do not know if the staff did not hear her or chose to not respond.

What is happening to cause these panic attacks?  They don't happen when she's with Mom or her respite care provider.  An email from Lyn's behavior therapist provides good insight.  She writes:

There could multiple issues going on: 
*  transition from on activity to another, and having difficulty with remembering what is next
* the change in lighting leaving the bus into bright lights could not be registering the depth of the stairs
* the commotion of the transition with everyone talking, getting stuff, standing in line waiting to get off the bus, etc.
* difficulty problem solving visual illusion effects (for example, when going downstairs – determining how many steps there are, and where the next one is; going upstairs is not usually a problem) 
The real extent of Lyn's visual difficulties will not be apparent until she experiences a change in environment, like going out shopping, on an outing, or on the van. Visual difficulties and ‘perceived obstacles’ will make Lyn more anxious and fearful. It would be helpful to anticipate situations where Lyn will likely have perceptual difficulties, help explain what is being encountered, offer encouragement and support, and slow down their own movements around Lyn.  When there is a lot of commotion, talking, other people moving around, her brain is not processing this information and she is over whelmed.   
The size of the vehicle (she can't put her foot out and touch the ground while still seated) and the number of people add to the processing confusion which leads to panic.  A hand out and a staff member standing right there would allow Lyn to focus on the staff and see where their feet are in relation to hers.  The staff to client ratio is only 3 clients to 1 staff.  This is not a high ratio and should be adequate to cover Lyn's transition and movement needs.

Mom is actively working with Lyn's team and the supervisors at day hab to address the situation.  

Monday, September 14, 2015

Deciding on Dinner

Mom had promised to take Lyn out on a picnic on Sunday, trying to make up for a tough day at day-hab on Friday.  Mom had planned for the lunch but didn't remember to take something out for dinner before they left.  When they arrived home, they called me so we could Skype.  It was late in the afternoon and I had already put dinner in the oven for my family.

Lyn asked what I had fixed and I had shared with her the meal plan.  I could tell she probably didn't even know what twice-baked potatoes are.  Mom indicated they needed to figure out what to fix.  Without hesitation, I suggested breakfast for dinner.  Lyn made a face than indicated she wasn't thrilled with the idea.

Later, I received an email from Mom.  After our call, Lyn had told her "I don't like breakfast at night but are you allowed to make french toast for me to eat?"  Mom assured her that she could eat french toast at any time, day or night, if that's what she wanted.

Thursday, September 10, 2015

Silverware

Each afternoon, while Mom is preparing dinner, she asks Lyn to set their places.  Lyn collects the silverware from the drawer and gets a napkin for each of them.  She's been doing this small chore for decades.  I remember her doing it when we were kids.

Earlier this week, she told Mom she wanted spaghetti but "I just can't make up my mind."  Mom started cooking the spaghetti and asked Lyn to set their places.  Lyn stood before the drawer, total confusion nearly sending her into a panic.  She didn't know which pieces of silverware to pick from the drawer.  Mom asked Lyn to get one fork and two spoons.  Mom already had a fork and knife on the counter which she would use to cut up Lyn's serving, passing Lyn the fork when being served.  

Once Lyn had the necessary utensils, she placed the fork and spoon at her place and left the spoon for Mom.  Mom asked Lyn to shift the fork to her spot.  Mom tried several times to convey what she wanted to Lyn.  Again, the panic was close to the surface.  Mom walked over and moved the fork herself.

Mom's seen this a time or two over the years but it is happening with increasing frequency.  Lyn's having a harder time recognizing utensils and how they should be used.  While Mom gives her a fork, Lyn mostly resorts to using a spoon.  We've also noticed that she now actively grunts with most bites.  

We will keep asking her to help for as long as she's able to assist.  Every little bit of stimulation is needed to help keep her engaged.

Wednesday, September 9, 2015

End of Summer

Summer is ending and already the quality of the light has changed.  The shadows are a bit more crisp and stretched.  The days are shortening and we anticipate an increase in Lyn's Sundowning symptoms.  Summer is such a nice break from them because the daylight often lasts longer than she does.

She is retreating again into herself.  There are days now when she declares she doesn't want to day hab.  She doesn't know why.  She doesn't have the words to express it.  There are days when she doesn't even want to go out of the house or change out of what she wore to bed the night before.  For now, Mom can still get her to bathe daily and at least change into clean pajamas at the end of the day.

We know that as the summer light dims, she will too.  Each spring sees her less intact than the year before.

Tuesday, September 8, 2015

Tricycle

Here's a sweet picture of Lyn from the summer of 1973.

She loved her tricycle and would ride it around the yard, always ending up at the fence to greet the neighbors should the come out.


Mom passed the picture to me when I was out there last month.

Thursday, September 3, 2015

Uncle Howdy

Howard Morgan was a weatherman in Albuquerque for many years.  He drew a smiley face on the sun each time the graphic was used in his weather displays and named it "Thermo."  He was also Uncle Howdy on a children's television show.  He worked in the Albuquerque marked from 1971 until his retirement in 1999.

Earlier this week, Lyn was watching television when she turned to Mom and asked if Mom knew who Howard Morgan was.  Lyn went on to explain "He used to be on this channel and did the weather.  He would draw circles and put faces on them.  Sometimes, he dressed as a clown."  Howard has been off the air for almost 16 years.  His children's show has been off air much longer.

Something triggered a long buried and rarely used neural pathway in her.  Mom says these random, deep memories happen more frequently these days.  Alzheimer's is a strange place.


Wednesday, September 2, 2015

Grandpa's Sister

In 1979 or 1980, my Grandpa's sister Mary came to visit.  She is deceased which is why I'm using her first name.  I remember her being a petite and lovely person.  His other sister was hard and intimidating.

It was Spring and Lyn was already competing in Special Olympics.  She had done very well and was well on her way towards many ribbons and medals.  We had finished up with competition and had driven down to my grandparents house so Lyn could show them her ribbons.



My grandparents were always supportive and made Lyn feel special over her achievements.  Aunt Mary clearly joined in too.

Mom passed this picture to me while we were there last month and I thought it was very sweet.  Lyn's so happy.


Tuesday, September 1, 2015

A Passing Plan of Action

If you are dealing with end of life issues, I highly encourage you to sit, think about the situation and outline a plan of action.  Think about what you will need to do when the person you're involved with passes.  Think about what needs to happen and the order in which it needs to happen.  No matter how much you love your person and no matter how much it hurts to think of their pending death, you need to put a plan into place for how you will deal with their death.  You need to do it at a time when you're not feeling high emotions, when you can think and make decisions with as little emotion, particularly guilt, as possible.  Doing so is not a betrayal of them.  You're not hastening their death or wishing them dead now.  You're being honest with yourself that action will need to be taken and you need to be prepared for that action.

Mom and I have these discussions at least once a year if not more.  Sometimes, especially when Lyn is at hand, we may only be able to obliquely refer to them.  When we're in physical proximity, we have been able to carve out an hour or two to discuss the topic.  We discuss the following:

  • Who needs to be called? 
  • What needs to be done?
  • When do we make the first, most important call?
  • Where are the documents?
  • How much time will be needed for me and my family to arrive?  How much advanced warning will we have?
  • Finally, in what order do those things need to happen?
So, here is our plan as it stands today.  We evaluate annually and the following may change.

Mom will not interfere with Lyn's death.  While she will not hasten it, she will take no action to delay it.  Let's be realistic and honest here.  Lyn's got a terminal disease and she's transitioning to the later stages of that disease.  If she were to aspirate on a bite of food and not breathe for a couple of minutes while Mom struggles to clear her breathing, what would the impact of that event be?  Would she ever be able to recover to where she was before?  No.  She can't.  So why torment ourselves with hope that she'd get better?

When Lyn stops breathing, Mom will wait until Lyn is clearly dead and rigor is starting to set in before calling 911.  Why wait?  Why not call immediately?  Simply put, we don't want them to take action to revive her.  They have to.  It is their job.  Our directives can and will be ignored if they arrive on scene and she's got even a flicker of a pulse.  

After the call to 911, Mom will then call the case manager and service coordinator.  Death is an "unexpected or unusual event" which Mom has to report.  

The office of the Medical Investigators will be called by the first responders to come and confirm there is not concern of foul play and that the death was of natural causes.  We will request that no autopsy be done.  What's the point?  We know what's causing her body to fail.

Mom will then start to notify others.  She's not going to call in the middle of the night.  It isn't an emergency or an unexpected event for us despite how the state labels it.  She'll call me and my brother.  I've offered to call others on her behalf.  At this time, she has declined the offer.  It stands and she can change her mind.  She may send a few emails and post it on FaceBook.  I'll update here and on FaceBook as well.  An obituary is already drafted and will be submitted to their local newspaper.  

I'll make travel arrangements for me and my family.  While we may arrive together, I anticipate staying behind to help Mom.  Depending on the situation, if Mom wants me there beforehand, I'll go early.  We don't know if we'll have advance notice of her passing.  Some families do and some do not.

A memorial service will be held in their church.  There will be no open casket and Lyn will not have a lift despite what has been done for previous family members.  Lyn will not be on display.  Lyn will be cremated.  

My grandparents cremains are in niches at a graveyard in Rio Rancho.  Those niches only have enough space for 1 each.  However, there are family plots in a graveyard in town.  I suggested we inquire about the feasibility of interring Lyn's cremains there.  Mom has no intention of keeping Lyn's cremains with her.  

From there, the plans become more fluid.  I can stay and work from Mom's house to help her out as she plans for the next stage of her life.  Perhaps, she'll travel.