Mountain Jay

On Wednesday, Lyn looked out the window and got too excited to verbalize well.  She softly called to Mom and repeated "Come slow!" several times.  When Mom got to the window, she found that Lyn was excited to see a Mountain Jay that was visiting their yard.  He quickly figured out where there was fresh water and seed to be found and was sitting on the hummingbird feeder when Lyn spotted him.  They're a fairly common bird in the mountains of New Mexico but this was the first one they've seen in their neighborhood.

The bird stayed the night and set up quite a conversation Thursday morning while feeding.  Lyn didn't see him the rest of the day, but she was very excited by his visit.

Perhaps she'll see him again today.  I'm sure she'd be thrilled if she did.

School's Back in Session

It is the time of year when students of all ages return to school.  I think we should too.  Here's your educational moment of the day.  The first two video links are about an hour long each.  If I could give you college credit, I would.

Alzheimer's Disease: Overview and Current Research - Emory University

What is Dementia - Presented by Dr. David B. Reuben - UCLA Health

Understanding Alzheimer's Disease as a Public Health Issue - Alzheimer's Association

Portraits

We had family portraits done while my family visited Mom and Lyn earlier in the month.  The photographer and Mom are friends and he was gracious to come to the house to take the photos.  This allowed Lyn to feel relaxed and comfortable.

August 2013

I don't know if this will be the last opportunity to have a good family portrait done, but it was so worth it to get the pictures of the three of us along with other poses.  These are some of the best pictures taken of Lyn in years!

It is not often that we see a real smile out of her anymore.  She was oozing charm for the photographer. It doesn't matter why she smiled.  It just maters that we got that smile captured.

In this together

My Golden Girl

Mom and Lyn were watching The Golden Girls earlier this week.

The character Sophia said something about her Social Security check being late.  This prompted Lyn to turn to Mom and tell her to go online and check the status of her Social Security check.  "They haven't mailed my check to me in a really long time."  Lyn's received a small Social Security stipend each month due to her disability.

Mom assured Lyn that she's been receiving her monthly disbursement.  Social Security doesn't mail the checks because they are directly deposited into Lyn's account on the third day of each month.  Lyn was shocked!  "Really..." was all she could say.

Bling

It has been two years since Lyn's last eye exam.   When she was seen last, the doctor said the all she needed as the light reading glasses that could be found at a local pharmacy.  Given that she doesn't read, he said even that was unnecessary.

Recently, she had been complaining that she was having a hard time seeing and would rub her right eye.  Fortunately, her eye exam was scheduled for last week.  She knew it was approaching and talked to me about how they would dilate her eyes.  They did after they attempted to have her read the eye chart.  She was unable to verbalize what she was seeing and subconsciously would raise her hand to try signing what she was seeing.

The technician realized fairly quickly that Lyn's responses were unreliable and the exam required her to test as though Lyn was non-verbal.  While Lyn was talking and trying to participate, her confusion and susceptibility to suggestion prevented her from giving meaningful answers to the questions like "Is it easier to see with 1 or with 2?"  Since "2" was the last she heard, it was the only answer she gave.

The result of the exam is that Lyn's vision has changed quite a bit in the two years since her last exam.  She no longer needs light readers.  She needs prescription bi-focals.  She is also to come back annually instead of biennially.  Visual changes are, unfortunately, common with Alzheimer's Disease.  As the disease progresses, the areas of the brain which process visual information are damaged.  The brain is less able to process the information coming in through the eyes.  The brain is also less able to direct or focus the eyes resulting in decreased visual acuity, reduced depth perception and a reduced field of vision.  (The impact to her depth perception was noticeable as we played Jenga and she needed multiple attempts to touch a block.)

Mom was more startled by the change than Lyn.  Lyn saw this as an opportunity to go shopping.  Mom took her to a shop so she could pick out a pair of frames.  Lyn apparently has expensive tastes.  Her preferred frame selection was a pair of $400 Coach frames.  Mom vetoed that pair.  They did find a pair that is in a more reasonable price bracket to please Mom and had enough bling to please Lyn.  Mom said that every pair that Lyn tried on were sparkly.  Lyn's new glasses will be ready in about a week.

Additional Information:
Vision Aware: Alzheimer's Disease
The Importance of Innovative Sensory Activities: Exploring the Changing Sense of Sight for Individuals Living with Alzheimer's (PDF)

Do Not Resuscitate Orders - Part Two

Decisions to not perform CPR are controversial.  CPR is intended to restart the heart which has been suddenly stopped as a result of drowning or a minor heart attack.  It is intended to save a person who is otherwise pretty healthy.  It has become, however, one on the most widely performed medical procedures even when it is futile.  DNR orders prevent this procedure, which is often considered the standard of care, from being performed.

Why would you withhold CPR if you can restart a patient's heart or breathing?  

Survival rates of CPR attempts are not what we might believe.  Less than 1 in 5 elderly patients who had a need for CPR while in the hospital survived to be discharged.  Rates are even lower for those with complicating factors such as cancer or age related fragility.

Why would you not attempt resuscitation if you can give the patient more time?

The patient may not want to be revived.  Period.  Full Stop.

The patient may not be revived to the same functioning level as prior to the event.  Bones may be broken.  Internal organs may be damaged.  One quarter to half of patients who survive CPR may be left with neurological damage due to the loss of oxygen to the brain.

Who has to follow a DNR?

In general, if it is a durable DNR, pretty much anyone who may normally administer CPR must refrain from it if they are presented with the DNR orders.  This includes medical staff as well as care providers in home, day hab programs, or respite providers out in public.  The laws around this may vary from jurisdiction to jurisdiction so please familiarize yourself with the laws in your area if you decide a DNR is needed.  Additionally, please make sure you have plenty of copies to share with any care providers who are involved.

Do we have to have this discussion?  

Yes.  We do have to discuss DNR orders.  We have to discuss them early and repeatedly because we need to know where each of us stands on the topic in case we are ever called upon to answer for a loved one who cannot answer for themselves.

This leads me to DNR orders and Lyn.  Mom has already secured durable EMS DNR orders on my sister.  Mom is going to discuss a physician's DNR for Lyn with her physician soon.  I fully support these decisions.

Lyn has a terminal disease for which there is no cure.  As her disease progresses over the coming years, Lyn's physical condition is going to decline just as much as her brain declines.  If her heart should stop, what would we be bringing her back to experience?  Would CPR even be successful for her or would that be a false hope based off of a procedure which is popular on TV because it is showy?  Would she be in more pain, have more brain damage, or be in a vegetative state?  How is any of that a benefit to her?  Should we keep her physically alive just because we are not ready to let her die?  Again, how is that of benefit to her?

We have been discussing this for several months and are agreed.  Lyn's Alzhiemer's diagnosis and the questions we asked in the above paragraph were really what guided our decisions.  However, when we decided to write this two-part topic, I dug into the topic of CPR a bit more, researched and even spoke with an experienced ICU nurse about CPR and its results.  I can honestly say that I was surprised at what I learned.  I previously thought it was more successful than it is.  A dear friend from college is alive today because of the CPR performed when his heart stopped.  Unlike Lyn, he was a good candidate for the procedure.  He is young and doesn't have a terminal disease.  Lyn is young but does have a terminal disease.  That is a significant difference.

Comfort care is appropriate in Lyn's case when the time comes that her heart stops.  If this happens at day hab or while she is with a respite provider, they must honor the DNR orders according to NM law.   As a result of these decisions, we will soon be updating Lyn's medical alert bracelet to include a DNR notation.  That way, if she's out and the papers are not at hand, at least it is noted on the bracelet which is never off her wrist.


Additional Information:
Ethics in Medicine - University of Washington School of Medicine: Do Not Resuscitate Orders 

Do Not Resuscitate Orders - Part One

A week ago, I was able to participate in the annual review of Lyn's individual service plan and home inspection  with two of Lyn's team.  It was a pretty standard review except when it came to the discussion surrounding the concept of Do Not Resuscitate (DNR) orders.

A DNR is a legal document which directs medical providers to not perform CPR on an individual whose heart or breathing has stopped.  It does not prevent other forms of medical care from being administered.  It is solely focused on the methods necessary to restart a heart that has stopped.  A living will or advance medical directive are not legal documents and do not carry the same weight as the DNR even if they clearly state your wishes to not be resuscitated.  There are several types of DNR orders which can be set into place.

The standard DNR that you may be aware of which is normally a document signed by a patient or a patient's acknowledged representative when the individual is hospitalized.  These orders may only b valid for the duration of the hospital stay or may expire after a certain period of time has elapsed.

The EMS DNR directs the first responders to an emergency to not resuscitate the individual.  If the first responders are presented with such a directive, they will continue to provide medical care to the individual while comforting the bystanders witnessing the individual's death.  This DNR is one form of a Durable DNR which does not have an expiration date.  At any time, however, it may be revoked by the patient or patient's representative.

The Physician's DNR is a set of orders put in place by one or more doctors who have either had prior knowledge of the patient's wishes to not be resuscitated or who have determined that even with the application of CPR the patient has no significant hope of surviving a heart stopping event.  The Physician's DNR is sparingly used because medical advances frequently allow doctors to perform heroics to save a life which previously may not have been possible.  Thus, they are often limited to those patients in the end stages of terminal diseases.

Please note that names and availability of DNR orders varies from country to country.  In the United States, all states recognize DNR orders.  However, each state's approach may be different.  You are best advised to familiarize yourself with the laws in your location and how they impact the availability or execution of DNR orders.

Additional Information:
Deciding about CPR: Do-Not-Resuscitate (DNR) Orders A Guide for Patients and Families

Visit 2013 Wrap-up

The week with Mom and Lyn was good though it had a different feel than our previous visits.

Mom was more tense when we arrived than I've seen her in a long time.  The stress of my sister's changes, particularly the emotional outbursts combined with frustrations trying to get work lined up in their home left her feeling discouraged and weary.

Lyn was happy to see us but is emotionally delicate.  She cries each day now when she is tired or when something provokes a strong feeling in her other than pure joy.  Joy leads to laughter which can hold off the tears for her.  Any other emotion leads to tears.  For example, at the wedding, she started to cry when the bride began her walk down the isle.  She also burst into tears when I had blocked her from swatting something off my skirt.  She told me there was something on my skirt and speculated it was a bee as she reached down for it.  I quickly reached back and blocked her from touching whatever it was because I know she doesn't know how to handle bees and if one stung me, I'd end up in the hospital.   I surprised her and her inability to regulate her emotions lead to tears and an angry huff off around a corner.

Over the two weeks preceding our visit to NM, additional changes have been noted in Lyn's behaviors.  She's asleep before 6pm each night.  (During our visit, she forced herself to stay up until at least 9pm.)  She also sleeps until 8am unless Mom wakes her.  (During our visit, she got up the moment she heard anyone stir in the house which was closer to 6am.)  She needs daily help picking out her clothes now.  She also has started finding social events increasingly difficult and has decided to reduce the amount of time she spends with a respite provider.  As of now, she will continue with day hab because that happens during the best hours of the day for her, roughly 10am to 2pm.  However, respite will only be used for bowling on Thursdays and 10-2 on Saturdays.  Anything else is too difficult for Lyn.

All of this points to where Lyn is at in the progression of her disease.  In the three stage model of Alzheimer's, Lyn is in Stage 2.  In the seven stage model, she's in Stage 5.  What this means is that she has Moderate Alzheimer's.  This is a difficult stage because of the emotional outbursts and the increasing need for daily interventions.  This is the stage where hallucinations can occur as well as aggressive behaviors.  Lyn has a visit with her physician in two weeks or so and all of this will be discussed.  We may be rapidly reaching the time when Lyn needs daily medical intervention to keep her emotions on a more stable level.  During this week, Lyn stated "I want to be happy but my brain won't let me."  This is a very telling statement because it again highlights her awareness of her own disease and her desire to not be upset all the time.

So, where does this leave me on how our visit went?  Actually, I think it went well despite the challenges noted above.

We got to see each other and that is value enough right there.  Mom got time with the grandchildren who demonstrated that they really can be great little people.  My little one's emphatic hands delighted and entertained each day.  My sister got to play with my children and upheld her self-declared title of the Best Bowler in the World by beating us all at 2 games.

Mom did win the first game though Lyn is firmly ignoring that result.

For the first time in my life, I experienced shoe envy over the pair Lyn was wearing.  She has a nice pair of white and black sneaker style bowling shoes.  The pair I bowled in were not that.

We had family portraits done.  It was a great success because the photographer came to Mom's home and did the shoot in a setting where neither Lyn's dementia nor my little one's PTSD were triggered.  That was a gift for which I cannot adequately convey how much it means to Mom and me.

We helped celebrate my other sister's wedding to a great guy.

We shared good food.  We shared way too much good food.  We ate chile each day, including the morning we flew back to NM.  I love being asked "Red or Green?" even though I'm going to always say "green."  I like just having that choice.

We oohed and awed over the playful snow leopard cubs at the zoo as they pounced on empty cardboard boxes, their mother and each other.

Not to be overlooked, I showed Lyn that my camera could take our picture while we watched.  This is probably the only selfie you'll ever see with me.  She was curious and it entertained her so it was worth it.

It got her to smile.  So, yes.  It was a good visit.

Slipping Away

I am sitting at the airport waiting to board our plane home.  We slipped away from Mom's in the pre-dawn gloam.  Lyn once again did not want to say goodbye and quietly went to bed last night.

Our week was good but short.  It was harder on Lyn to be out of her routine than it was a year ago.  She cries daily now, mostly unable to express why or what she feels.  She wants to be happy but says her brain will not let her.

She is slipping away and I ache for the load Mom is carrying.

Male Motivation

When my family and I arrived at Mom's, Lyn was still up and wide awake waiting with their lovely neighbor.  She hopped up and hugged my husband and children.  She barely looked at me.  She was happy we were all here, however.  As the week has progressed, the fact that Lyn is motivated by men has been made blatently clear on a daily basis.

When we had family portraits taken earlier in the week, she wanted to position herself next to my husband in pictures and she flirted with the gentleman behind the camera who was able to evoke some pretty smiles from her.  I had asked for a picture of my hand holding hers.  She asked for a picture of her hand holding my husband's.  (We said "No because it is time for a picture of just you.")

Prior to our arrival, she had told Mom her computer was no longer working and she needed my husband to fix it for her.  Mom took a look at the computer and said "It might be dead.  I have an old one in my closet you can have."  "No!  He will fix it for me.  On the second day of our visit, her subtle hints for technical assistance got him in her room evaluating her computer.  It is dead as Mom surmised.  When my husband stepped into the kitchen to inform Mom, she pointed out the computer in the closet.  He collected that and got her up and working on it in short order.  She was so excited to have a "new" computer with Solitaire.  She was about to burst when he told her he would install a bowling game as well.  Mom went into the room to thank him for bringing a computer with him in case she needed it.  You see, because he said the old one was dead, it was and because he set set up another, it was new.

Over the past several days, Mom and I have chatted about other examples of Lyn's male motivation and it reminded us very strongly of my maternal Grandmother.  Grandma was also motivated to show her best behavior when a man other than my Grandfather was around.  She would flirt and focus her attention on them to the exclusion of the women around her.  This personality trait did not diminish when her own Alzheimer's was in play.  It actually became more blatent as it is becoming with Lyn.  A clear example that Mom shared with me occurred a few months before her death.  Grandma's leg had broken as a result of her severe osteoporosis.  When Mom was called by the nursing home, she immediately went in and found Grandma was being tended to by multiple male EMTs.  She was flirting outrageously while ignoring every woman in the room.  Lyn's nearly at that point.

It is actually kind of funny.  

When in Rome

When we visit Lyn, we let her set the pace these days.  Some days that means we sit and just play games.

Dancing and Driving

Last week, Lyn and the other day hab participants were in the facility's van returning from an outing when the driver turned on the radio to a station they all enjoy.  A song came on that they all knew and one after the other, they put their arms in the air and started dancing in their seats.  None of them had noticed the police officer driving behind them.  He noticed them, however.

Before the song was over, the officer turned on his lights and hit two quick bursts from his siren.  Upon seeing the lights and hearing the Whoop-Whoop of his siren, the driver quickly pulled over, rolled down the window and asked "What's the problem officer?" as the police exited his car and approached.    The driver continued "I wasn't speeding and didn't change lanes.  What did I do wrong?  Is there a burnt out tail light?"

The officer assured her that she didn't have any driving infractions.  However, he was quite agitated by all van's passengers flipping him off.

"Are you serious?  I am driving a van full of special needs clients who were dancing to a song and you think they're insulting you?!"  She said as she reached to turn the radio back up.

The officer backed down and told them to move along.  Unfortunately, Lyn and the others were rattled.  One was visibly upset.  They returned to day hab in subdued moods.

The officer didn't apologize for pulling them over.

Guessing Games

Mom, Lyn and I held our regularly scheduled Skype conversation on Sunday.  It didn't matter that Mom and Lyn were to see us the next day, keeping to the schedule was important.  Besides, it provided a good distraction for Lyn who was bouncing between belligerent and excited all day.

When we started the conversation, Lyn wanted me to guess where she had gone on Saturday.  Her clue to me was that it was "big and fast."  I dislike guessing games like this but recognize it for a conversation tactic and decided to play along.  I asked if she went on a boat, a semi-truck, an airplane, or in a racing car.  With each question I asked, she got more and more disgusted in her "No!"

The next clue was issued with "It goes North."  I asked if she went on water or in the air.  "No!" and "No!" When I asked if she was on land, I got my first "Yes."

I asked if it had wheels.  "Yes!"

I asked what sound it made.  Mom whispered to Lyn and she mimiced with "chugga-chugga-chugga-chugga."  "You went to a beer festival?!"  "No!" she nearly yelled at me.   At this point, I'm merrily laughing as Mom flips me off.  "You know I will pay for this later."  I nodded and asked "Did you go on a train?"  "Yes!"

"If you went on a train and it went North, how are you home already?"  She responded with "Because I went yesterday" as though it was the most obvious thing in the world.

With that she changed the game from what she did to where she went.  "You said the train went North. Did you go to Canada?"
"No!"
"Montana?"
"No!  It starts with 'S'."
"Oh!  South Dakota!  Why didn't you tell me?"
"No!"
"You went to Santa Fe on the train?"
"Yes!"
"That sounds like a good day.  Did you have fun?"
"Yes."

The guessing game was over and she had let me figure out that she had taken the Rail Runner commuter train from Albuquerque to Santa Fe with her respite provider.

"You must think your sister's an idiot for having to guess so many times."
"Now, don't you say that!  It is not true."

Good to know.

Of Anticipation and Late Nights

Lyn's on edge today.  She's excited that we'll be arriving tonight and is assuredly going to keep herself up super late to see us when we arrive.  Mom's lovely neighbor will come over to stay with Lyn while Mom collects us from the airport.  

If you think she'd let us just grab a rental car or cab it over to her house, you don't know Mom.  This is the woman who once met me at the airport "with bells on" when I was in college.  Seriously, she was wearing an actual bell.  She rang it when she saw me.  I now use it as part of my Christmas decor.

So, what do I expect when we arrive?  Hugs and kisses at the airport.  A quick drive to Mom's.  Hugs to Lyn and the lovely neighbor.  Tears from Lyn.  I'm sure Lyn won't stay up very long after our arrival.  She'll be glad we're there but exhausted from the wait.  

That's OK.  It will be worth it.

As a side note, if there is intermittent blogging this week and early next, please forgive any missed days.  We'll be spending the time together and I'll be taking a much needed break from the keyboard.  I thank you in advance for your understanding.

Just Around the Corner

Our tickets are purchased.  Our bags will be packed this weekend.  In just a couple of days, we'll be in New Mexico spending time with Mom and Lyn.  We will be there a week and have a few things planned.

There's the wedding of my Mother's other daughter.  We will all attend the ceremony.  Mom has graciously offered to care for the kids so my husband and I can attend the reception like grown ups.  You'd think that caring for an Alzheimer's patient would be more than enough.  Yet, here she is asking for unsupervised time with the two kids.  Either she's crazy or she's a grandma excited to see the kids.  Maybe it is a bit of both.

There's a team meeting for Lyn with her staff.  I always appreciate that a meeting is scheduled during our visit.  This gives me an opportunity to participate in person, to observe the dynamics of the group and to feel like I'm part of Lyn's care circle.

There's time for eating as much chile as we can stuff in our gobs.  Given that you can get chile with each meal, including dessert, I assure you, we'll be sweating chile by the time we fly home.  A colleague asked if I like Christmas chile and I surprised her by saying I didn't care for it.  Christmas chile is when you have both green and red chile on a single plate.  I'm a green chile girl all the way.  Red chile tastes brown to me and I don't care for it.  (Sorry, I can't explain it any other way.)  I know that admission puts me at risk of being booted from the New Mexican club, but it is the truth.

There is an opportunity to get family portraits done as well.  It has been a few years since we've had them done and I'm not sure it would be wise to delay.  A year from now, we may not be able to actually manage a session with Lyn.  So, we'll make it work.  I'm very excited about it and hope we get a good one or two.  It should be interesting between Lyn's behaviors and those of my little one.

I just hope for a smile.

Just Say No

The Temperance lecture is not limited to humans as we found out.

Mom took Nikka to the vet's office for the annual visit.  She got a clean bill of health.  During the visit, the vet asked how Nikka was doing and learned of her terror of thunderstorms and fireworks.  New Mexico has been in a drought for years but this summer has been full of thunderstorms which leave the dog a quivering mess hours afterwards.  Wiping her down with dryer sheets only do so much.  Her terror has become so bad that the thunder shirt has been ruled out for her.  The vet provided Mom with a prescription for the dog.  Here's what Mom wrote earlier in the week:

"Well, today's storm has passed.  We almost had rain at both front and back of the house.  So unlike yesterday with rain, hail and wind.  (The day before, they had a little rain at the front of the house while the back remained dry.)  This year, for the first time in several, we are having a real monsoon.  Poor Nikka.  We have had lots of thunder and lightening.  It can last a minute or continue for over an hour.  As with most dogs, it frightens her.  Last year, she would settle down when the storm had passed.  Not this year.

As the storm approaches she becomes nervous, panting and pacing.  This will continue for hours after the storm has passed.  She doesn't just shiver she SHAKES.  If I attached a container with cream to her sides I bet I'd have butter after a while.  Last week when I took her for her annual check and shots the vet asked me how she was coping.  I laughed and said that one of us needed something.  He said so many dogs were having a more difficult time this year.  He offered a prescription of Xanax.  I thought it was so funny, a controlled substance for my pet.  I said it might work.  He figured out from her weight that I could give her 1-2.5 every 4-8 hrs as needed.  I put it in my purse and didn't take it to my pharmacy till Saturday.  BAD idea.  They had to have the vet's DEA number.  Remember, it's a controlled substance.   Naturally, we had a storm Saturday and Sunday nights and she "suffered" so I made sure I picked it up Monday afternoon.

When Monday's storm hit with a vengeance, I told your sister that I was going to try the meds.  I gave her 1 pill.  No effect for an hour and as the storm turned back and hit again I gave her a 2nd.  It took about 1/2 hr to kick in.  However, the storm blew out of our area.  Poor dog was now looped.  Your sister was MAD.  She went on for about 2 hours how I should "not give a dog drugs."  She didn't care if the vet prescribed them.  She would again tell me NOT to give them to her again, this as the dog struggled to get her back legs on the couch.  As Nikka laid next to Lyn and looked up with a sad face, I began to hear again how I didn't know that drugs were not good to use.  She would tell me I could get in trouble for giving drugs out.  I tried to explain it's ok when we get them from a doctor, use them according to directions and don't give or sell them to others.  It didn't matter!  "Drugs are bad."

OMG, you would think we lived in a area where drugs are a problem.  LOL, I told her she was right but it's not a problem for dogs.  Nikka was beyond chilled and happy.  Next time it'll be 1.5 pills.  About 8pm, we heard sirens and what was I told?  "See, the police are looking for people doing drugs."  Actually, it was Rescue and an Ambulance screaming by.  I knew it was best to just keep quiet.  

Never argue with the disease.  Should add Never laugh either."

Princess of the Deep

Years ago when Lyn was still swimming competitively, there was a swim meet which gave us a good laugh because Lyn was putting on her best display.  Lyn was still very able bodied at this time and was either in her late teens or early twenties.

We took her to the meet and found that most of the volunteers were service members from the local Air Force base.  They have frequently been volunteers at the various Special Olympics activities over the years and it was no surprise to see them there.  They've volunteered for bowling, track and field and even skiing.  What was different was that this was a swim event.  So, the volunteers were mostly in swim attire.  Additionally, because some of the athletes were less coordinated, the volunteers were both at the edge of the pool and in the pool providing assistance getting athletes in and keeping them afloat if necessary.

Lyn saw an opportunity.  These fine, upstanding service members who were physically fit and ... oh my... were there to help and she was there to take advantage of any and all assistance they offered.  They didn't know her or her skills and just saw a swimmer who obviously needed hands-on assistance getting in and out of the pool.

Our jaws dropped as she played the damsel in distress getting into the pool.  She graciously accepted the strength and stability the volunteers provided.  Of course, she positioned herself so that the volunteers who helped were all male.  She swam her heat, reached the end of the pool and just held up her arms while looking at the volunteers at that end.  They reached down and pulled her up.  She walked away with supreme confidence and a smug smile playing about her lips.

When her second heat was called, the same tactic was employed.  Only, this time, Mom was on the alert for the behavior.  As Lyn struggled to get into the pool, clearly playing up the need for help from a dashing young airman, Mom clapped her hands together and called out a sharp "Basta!"  Lyn knew exactly what was going on and she stopped the act and got into the pool unaided.  The poor volunteer was so confused.  When she got to the end, she started to hold up her arms again and glanced over to Mom.  Mom was already nearly at the pool edge by that point.  "Cut this out and get out of the pool right now.  You don't need help."  Lyn scowled and hauled herself out of the water, no assistance needed.  The airman was still trying to assist so Mom turned to him and said "Back up!  She can do this."  Shortly, thereafter, one of the coaches approached Mom to tell her she cannot approach the pool again.

Through out the rest of the day, Lyn continued to find little ways to get the male volunteers to help her and get their attention focused on her.  She'd glance over at Mom to see if Mom was watching and if she was, Lyn would tone it down a bit.  If she thought Mom was not watching, she'd sashay to her position, bold enough to cut across the catwalk that spanned the middle of the pool which was supposed to be closed to the athletes.  She always did admire a willing hand attached to a good looking  volunteer or man in uniform and still does.

Laundry

On Saturday, Mom helped Lyn do her laundry.  Lyn is able to still put the clothes in the washer or dryer.  Mom turns on the machines for her. 

When Lyn pulled her first load from the dryer, she brought the pile of clothes into the living room, asking if Mom would "be happy to help fold" her under pinnings.  As she dropped the clothes onto the couch, two of the dryer balls Mom keeps in the dryer fell out of the pile and rolled across the floor.  

Exasperated, Lyn stated "Don't you just hate it when your balls fall off?"

Mom bit her lip so hard to keep from laughing that her lip is now sore.

Waiting is Difficult

Friday night, after Lyn returned from respite, she sat on the floor with Nikka.  She was trying to tell Mom something and couldn't get it out.  

Mom had called me earlier in the afternoon and Lyn, of course, wanted to speak with me.  Mom had told her that the call would be quick as I was probably starting dinner cooking.  She said "yeah, she's probably tired too."  Within 2 minutes of hanging up she was still sitting on the floor and burst into tears.  Again she didn't know why.  

Mom went over and hugged her.  "You want (your sister) to get here."  The tears really started.  

"I want her here now.  I miss her too much."  Mom agreed with her and told her how many days were left.  She knew but she wanted me there right at that minute.  

Poor girl.

Her Reality

Lyn's reality is a different place than the one the rest of us experience.  She is easily agitated as a result of perceived offenses or her own realization that she's unsure of what is going on around her.

Take for example the recent example in which the subject of a local bar was brought up.  From Lyn's telling, her respite provide asked if she wanted to go to a Country-Western bar to go dancing and drinking.  This raised Lyn's ire and she was quite upset that someone would think that she would visit a bar.  It is not her cup of tea, after all.  We've heard her tell this tale several times now and each telling makes her upset again.

Mom was able to speak with Lyn's respite provider to find out what really happened and the incident is much less of a situation than Lyn's telling would lead you to believe.  Lyn and her respite provider had recently attended a dance hosted by a local church.  While there, Lyn's respite provider asked another respite provider if she knew of similar events.  The other respite provider asked if the local bar was an option.  Lyn's respite provider indicated that the bar was not a good option because Lyn doesn't care for bars or drinking.  While she likes the organized dances, she no longer dances.  She just stands on the floor and looks around her, watching the movements of the others.  It was a reasonable suggestion given that some of the adult clients do enjoy visiting the bar.

Lyn's brain and the dementia have translated this simple inquire into something upsetting and offensive to her.  It reminds me of the tales my Grandmother would tell before she passed.  She had her sisters and other relatives convinced that she was left home alone every day and Mom refused to take her to Mass, the grocery or even the doctor.  My Grandmother was never diagnosed with Alzheimer's though I believe now that she had it.  My relatives took Grandma at her word and didn't inquire with Mom to learn if there was another side to the story.  Grandma's reality caused unnecessary tensions within the family.

Lyn's reality has the potential to do the same.  Fortunately, we're much more aware of the workings of the mind diseased by Alzheimer's and Mom wisely sought a different perspective on what was upsetting Lyn.

1, 2, 3, Repeat

I recently mentioned that Lyn is struggling to count.  Mom confirms that this change is here to stay and getting worse.  Mom writes:

"When I washed her hair this morning she wanted the top twisted.  I take 6 rows and twist them and clip with little clips.  She brought out 8 clips.  I said to get 6 and put the rest back.  She struggled a couple of times then told me to "use what I wanted"  After I did the hair, she put the other 2 away.  

Then just before we left, I asked how much money she had just in case they went to Tingley and rode the little train.  She said "enough."  I asked her to count because I didn't want her to get down there and find herself short.  She pulled out a wad of bills.  I asked if she had a $5 bill.  She didn't.  So I said "Let's count to see how much you have."  She began four times to try to count and couldn't get past 3.  I could tell there were more than 10.  She began to be frustrated.  I said that I thought she had enough and distracted her with getting Nikka's toy.  When we left a few minutes later, it all was forgotten."

Lyn's numbers are falling away.