Tuesday, May 31, 2016

A Handful of Changes - Continued

Continuing yesterday's topic:

There have been times when I've been in a Skype conversation with Mom and Lyn and I'll witness Mom discreetly directing Lyn to return to the restroom because she needs to tend to a hygiene issue.  I experienced this first hand last week.  We were at the table playing a round of Bingo when waves of nauseating odor would hit me.  While Lyn was looking for a number on her card, I motioned to Mom.  A few minutes later, Mom whispered to Lyn and asked her to go clean herself again.  Lyn was instantly angry.  This incident is indicative of two things which is common with Alzheimers.

First, person hygiene tasks are complex, multi-step activities.  Alzheimer's patients forget the sequencing of the tasks involved and may omit steps altogether.  They may need verbal reminders and, in time, physical assistance.   Lyn currently needs verbal prompting on a nearly daily basis.

Second, Alzheimer's patients have ever decreasing abilities to smell.  We have noted before that there are seats that can serve as an early indicator of someone potentially having Alzheimer's.  Scents such as citrus, leather and peanut butter are not easy for someone with Alzheimer's to smell.  As the disease progresses, they continue to loose the ability to smell.  They can literally be stewing in their own waste without having any clue.

There are new changes with her phrasing as well.  She now asks "May I make an idea?" instead of "May I make a suggestion?" or "I have an idea."  I find this change charming.

Finally, I've noticed an odd little change.  Lyn's dog Nikka is a love.  She's a sweet and gentle dog who melts at the hint of a bit of attention.  If you try to pet her, she may become a boneless lump with her belly in the air.  She loves a good belly rub and was very insistent that I give them to her all week.  This provoked a bit of jealousy in Lyn which is nothing new.  What was new was Lyn's response.  She would tell Nikka "Close your legs!"  It became a regular statement when I was petting Nikka and I'm not sure Lyn felt that seeing the dog's genitals was inappropriate.

Monday, May 30, 2016

A Handful of Changes

Each Summer when I visit, Mom asks me to identify any changes I notice.  When I first get there, I usually think there's nothing new that I can note.  I see the changes to some degree through the year.  I'm always wrong.  There are changes which are more evident when you spend extended periods of time with her.

Lyn can no longer follow a conversation.  She can follow a few sentences but not much more.  She's desperate to engage but she's not sure where to jump in gracefully so she just jumps in with whatever thought is in her head.  That thought may be triggered by a word or a half of a sentence she just heard.

Lyn's attempts to control her environment is driven out of anxiety.  It extends now to what we say.  As I mentioned last week, there's a whole list of things that she won't let us discuss.  She will correct anything she perceives to be wrong or inappropriate.  She cannot parse colloquial phrases.  For example, when I said "I'm going to jump in the shower," this sparked a lecture on safety.

Lyn is now in high repeat mode.  She will repeat a sentence or a question many times a day now.  While I was there last week, I heard countless times that she calls Nikka "twinkletoes."

Lyn seeks less physical contact than she has in the past.  I only saw her hug Mom once in the week where it had been a daily thing before.  She wouldn't touch me at all.  She pulled away if I reached out to touch her.

Lyn is not able to maintain a thought for very long.  She wanted to play Memory.  I didn't know that they now only play with a few of the tiles.  We played and I watched as she picked up the same two tiles for 6 or 7 turns.  There were times she knew she had seen a tile but had no memory of where she had seen it.  A year ago, she would have been able to get more than one or two pairs.

Wednesday, May 25, 2016

The Archbishop's Visit

A story from my Grandmother's Alzheimer's:

Before Grandma's care became too complex for Mom to manage, she still lived at home.  Mom was her primary caregiver.  Grandma was not very mobile and spent much of her time in bed.  Despite this, there were times when she insisted on attending special events at church.  

There was an evening event where the Archbishop came to their parish.  He was to say Mass and there was to be a meet and greet social afterwards.  Grandma put extra effort in getting dressed to meet the Archbishop.  She wanted to charm and impress.  She refused to put on a Depends.

They arrived at church and Mom pushed her wheelchair to the front of the sanctuary.  They found themselves seated next to the priest as the Archbishop conducted Mass.  

Halfway through the service, Grandma suddenly looked panicked.  She turned to Mom and urgently whispered "We need to leave NOW!"  A moment of confusion was quickly removed as a wave of noxious fumes hit Mom.  She looked to her left and saw a clear shot to the side exit.  Mom directed Lyn to get the door as she grabbed Grandma's wheelchair and started sprinting for the exit.  "Hurry!  Hurry!" Grandma urged.

They hit the door at a run and kept their pace to the car.  Mom grabbed the sun visor to separate Grandma from the car seat and got her seated in the car before the gas which warned them in church was replaced with something more substantial.  Mom rushed home and got Grandma into the back bathroom where she could strip down for a shower.  

Grandma never got to charm the Archbishop.  She also never objected to Depends again.

Of Boyfriends and Bowling

Annually, I go bowling with Lyn because it is an activity she loves and is good at.  For months beforehand, I hear how she's going to beat me.  She's right.  She always wins.  I'm a terrible bowler.

We were just getting started when a large group arrived and occupied the next three lanes.  The bowlers were also special needs.  We immediately recognized several of the athletes.  Lyn knew them from school and Special Olympics.  She had even dated two of the men years ago.  They both came over and greeted us all by name.  They hugged each of us and one of them settled in to chat with us as we bowled.

Lyn and I rotated through our turns.  In each game, she threw two strikes.  In each game, I had at least 4 gutter balls.  Pretty soon the other bowlers were laughing and calling out to me to "throw it down the middle!"  They're better bowlers and were giving sound advise.  I'm just that bad.

After throwing another gutter ball, I walked between Mom and one of Lyn's friends.  He asked Mom " Do you remember when Lyn and I went to Cliffs (amusement park) together?  We were boyfriend and girlfriend then.  Can Lyn be my girlfriend again?"  He had called out some encouragement and some teasing comments to Lyn.  Otherwise, he had been trying to charm Mom.  She told him " No.  Not today."  Lyn later agreed she didn't want to be his girlfriend again because he wasn't always appropriate.

We had a good time.  Lyn is very pleased that she has the higher score as she predicted.  Her friends gathered around us as we packed up to leave.  There were more hugs and well wishes.  It was a delightful surprise encounter.

Tuesday, May 24, 2016

On the Question of Faith

I think I have hinted at my beliefs here before.  I am an atheist.  I was raised a Catholic and Mom and Lyn are active Catholics.  They attend Mass weekly.  Mom used to be much more involved but Lyn's care now prevents her from being able to teach or participate in evening activities.  Their faith is important to them.

Every once in a while, Lyn will raise the topic of God with me.  Yesterday was just such a day.  We were in the car and she asked "Do you enjoy going to Church?"  Mom was driving and I saw her flinch.  I used to give very vague answers when confronted by such questions.  There was a time when I was trying to sort out my own thoughts on the question of faith and when I was afraid of offending others.  I decided to answer the question she had asked; not the implied question.

"No.  I do not enjoy going to church.  Do you enjoy going to church?"


"I'm glad you enjoy it.  What do you like about it?"  I am happy to hear why someone enjoys services or why they find meaning in their faith.  I'm bemused by my recent encounters with missionaries at my local grocery store.  The have recoiled in horror and run away upon hearing "atheist." You would think I was a good candidate for a conversation.

Lyn proceeded to tell me that God is very helpful to everyone. He gives us what we need and loves us.  The best part was when Lyn told me that "We need to go to Church to pray for Him."  I had to stifle a giggle.  Mom interrupted at that point to distract Lyn to a different topic. 

When we got home, I told Mom that "I never knew God needed people to pray for Him."  Lyn apparently considers God her equal.

As I wrote this, Lyn asked "Do you love God?"

I hesitated as I wondered what her reaction would be if she heard "No."  Mom quickly jumped in with "In her own way."  Lyn accepted Mom's answer and stepped into the other room.  Mom confirmed that Lyn would not understand and she doesn't want Lyn upset by my potential answer.  So, I will use vague answers for Lyn in the future.

Monday, May 23, 2016

Things We Cannot Discuss

Conversations and interactions with Lyn are potential filled with potential land mines for her.  We know topics about medical conditions or treatment will result in a directive that the topic is inappropriate.  If I say a word she doesn't like such as "crap," I will be reprimanded.  

I'm not always able to anticipate when will raise her ire.

Yesterday, as we were out and about, Mom and I were laughing about family stories which are so unusual as to be unbelievable even though they're true such as my great aunt who was seated upright through her funeral.  Lyn told us we should not talk about it.  

When we were in a home decor store picking up black throw rugs, I playfully reached over and did a slow, fake slap on Mom's arm.  Lyn tried to throw me out of the store.  We had to explain that we were playing and not fighting.  

Later, we were in an Old Town shop with vintage and eclectic fabrics.  I spotted some dish towels with appliqu├ęs of shirtless cowboys from some Alexander Henry fabric.  I pointed them out to Mom and Lyn was instantly angry.  She gave me a very stern expression and pointed towards the door.  She wanted me out of the shop.  Once we were home, I asked Lyn what was wrong with the shirtless cowboy.  She told me it is inappropriate for them to be without a shirt.  "They need to be sharp."  Sharp means dressed nicely.    

I asked if I could find pictures of shirtless cowboys on the internet.  "No.  Don't.  That's dangerous."  So I did and her eyes about popped out of her head.  I showed her a few pictures and she disapproved of them all.  The shirtless firemen and policemen pictures were just as scandalous.

I figure if I have a list of ever growing things I cannot discuss, I might as well explore the boundaries of those things.

Sunday, May 22, 2016

A Girls Week

Mom asked if this year's trip could be just a girls week.  I told her we would make that happen. Each day, we will do things that either need to be done or short things which we figure Lyn can handle.  

I flew in on Saturday.  My flight were uneventful and the children who were screaming in the airport passed out for the flight.  We approached Albuquerque from the East, passing between the Sandia and Monzano Mountains.  Normally, planes fly in North of the Sandias and circle the city to West before landing.  By coming in directly from the East, we were right on top of the airport and had to skirt the foothills before making a tight u-turn to land.  It was unexpected but nice to see the city a little differently.

Lyn was with her respite provider.  When they got home later in the day, I was already there waiting for them.  Lyn's respite provider tried to tell Lyn to "go hug your sister."  She stated that Lyn was excited to have me visit.  I laughed and assured her that I was aware of Lyn's excitement but didn't expect a hug.  While I had a layover in Dallas, I had called to let them know that everything was going as hoped.  When I told Lyn that I was on time, she whooped loudly in my ear.  Just because she was excited, does not mean that she would be demonstrative when she saw me.

Saturday night, Lyn was exhausted but refused to go to bed because I was still up.  I decided I was grown up enough to go to bed at 8.  That made it easy to convince Lyn to go to bed too.

The week has been planned out for me by Lyn.  There will be games of bingo and uno, craft time for perler beads, going out to eat and, of course, bowling.  

Wednesday, May 18, 2016

Not Wandering - Yet

Lyn's sleep pattern has definitely changed.  She still goes to bed early in the evening.  Frequently, 5pm is beyond her ability to get beyond.

She's now getting up about 5 hours later.  She'll be up for 30 minutes to an hour.  She'll come out of her room and look for Mom and Nikka, often saying she heard or saw something that woke her up.  We suspect she's still hallucinating at night.  She'll sit in her chair and watch tv if it is still on.  After a bit, she'll start to fade again and Mom can redirect her to bed.  Mom will then go to bed herself.

A couple of hours later, Lyn is up again.  This time, she finds the house dark and works her way to Mom's room.  She'll ask Mom if she can get in bed with her.  Mom will hold the blanket up so Lyn can slide in beside her.  They'll both fall back to sleep.  Lyn snores terribly and Mom doesn't quite sleep as well as could be hoped.  If Mom can't fall asleep, she won't get up or relocate.  If she stirs, then Lyn's up and up for good.

By six, Lyn's up and ready for the day.  She'll get up and let Nikka out.  If Mom doesn't get up, Lyn will come and talk to her every few minutes, eventually telling her it is time to get up.  It may be 6:30 at that point.

The sleep is definitely interrupted.  There's no getting Lyn to nap unless she's sick and napping during the day will increase her nighttime wakefulness..  She's sleeping less than she was a few months ago but this is just one of the transitions in Alzheimer's.

This is an expected and unsurprising change.  At this point, we're thankful that she's not yet wandering.  However, it is time to get the black rugs out and install a couple of baby proofing measures like the door knob covers which will prevent her from going out the door unsupervised.

Tuesday, May 17, 2016

The Paperwork

Mom called the university to discuss the documentation needs for the donation of Lyn's body.  Mom explained the situation (intellectual disability and early on-set Alzheimer's) and asked what documentation would be needed to donate Lyn's body without Lyn's signature.  Lyn would not understand the concept of donating her body when she passes and would find the concept very upsetting.  We don't want to upset her and don't feel it is necessary to discuss the decision with her.  She's never been comfortable with the topic of death and feels such discussions to be "inappropriated."

Mom spoke with a university staff member who let Mom know that with the Power of Attorney, Medical Power of Attorney and the court documentation making Mom Lyn's legal guardian she could sign the body donation paperwork without Lyn's involvement.  It would need to be notarized.  The university will hold their copy of the documentation until such time as it is needed.

Mom went to the bank to use the services of the notary there.  He ended up being very uncomfortable with the situation.  He wanted to know why Mom was signing the paper meant for Lyn.  Mom explained she had already cleared it with the university and had the necessary court documents at hand.  She pointed to the number at the bottom of the document and invited him to call the university to confirm.  She reminded him that the obligation of the notary is to confirm that the person who signed was who they claimed to be.  The notary is not to pass judgment or allow their feelings to intervene in their ability to confirm a person's identity for the document being signed.  The notary was not happy but eventually did notarize the donation documents.

Monday, May 16, 2016

A New Impediment

Lyn's been approved for Community Access for several weeks now.  Mom had interviewed and selected an agency to provide the service.  Mom had even interviewed a couple of providers and found one that clicked.  Lyn should have started with the program two weeks ago but she has not.

The agency hasn't gotten everything lined up.  The provider who Mom selected has decided that Lyn doesn't need enough hours and has decided to not work with Lyn.  The agency has no other provider available currently and has indicated they will have to hire and train staff before Lyn will be assigned to a provider.  This delay is hard for Lyn to understand and she's very impatient to get started with the service.

It looks like we'll have to start the process over again.  We have he budget.  Now we need to find a provider willing to work with Lyn and use the Freedom of Choice to move her from the current agency to a different one.

Wednesday, May 11, 2016

Tender Hard Spot

Off and on for more than a year now, Lyn will complain about her head.  There are times when she's described it like ants on her scalp.  Sometimes, she's described it as "tender hard spot."  Mom always checks and there's nothing there.  The doctor has checked and there's nothing obvious.  What seems to help is having her hair brushed.  It soothes the unhappy nerves and calms whatever it causing her discomfort.

For a long time, I've wondered it the cause is actually pain or a strong itch.  An itch happens along the same neural pathways as pain.  While they are different, they are related but respond differently to stimuli.  She could be experiencing pain and is unable to help more clearly identify it.  It could also be a minor issue but because of her Alzheimer's she may be more focused on what she's feeling, less able to evaluate and dismiss it.

It is happening less these days but when it does, the brushing is the solution; for now at least.

Tuesday, May 10, 2016

Body Donations

One of the many conversations we've had about the pending death of my sister is a discussion about how will we tend to her in the time immediately after she passes.  We've found repeatedly that we are quickly able to come to consensus.

We've decided that we won't interfere or try to delay her passing.  When her body begins to fail, we'll make her comfortable and let her death take place.  We will not call emergency services because they may attempt to revive her.  We will wait and call the non-emergency number once we're sure she's not just merely dead but most sincerely dead.  We had also decided to cremate her.

The topic of body donation has come up.  We're investigating it.  We know that Lyn's direct relatives (parent and siblings) need to be in agreement.  We are.  However, there's also forms for the individual to fill out, granting their permission to be donated.  These forms need to be notarized.  We're looking into what that means given her capacity for understanding.

Mom also is interested in what this option means from the perspective of her religious beliefs.  She's Catholic.  She's spoken to her priest and is looking into what the Vatican has to say about the concept.  A little nosing about the web looks like she'll find the Church is supportive of organ donation as well as body donation.

Now, we'll look into the logistics of what will really be needed to donate her body and how much Lyn needs to agree to it.

Monday, May 9, 2016

Mothers Day 2016

My dear sister provided Mom with a bouquet of roses for Mother's Day.  The surprise was done with an assist from Lyn's respite provider.  The flowers were given on Saturday.

Late on Sunday afternoon, Lyn pulled out a card she had purchased at the same time as the roses.  Lyn told Mom that she didn't think Mom needed both the card and the flowers at the same time.  Mom got a good laugh as a result of Lyn's logic.

Mom, Lyn and I had an extended conversation on Sunday.  My visit to them is set for the end of the month.  We'll celebrate in person.  It will be our first time as just the three of us in years.  I know we're all looking forward to the week and are counting down the days.

Thursday, May 5, 2016

Sea Hero Quest

Last night as I was reading through the news, I found an article about a new dementia research project which is cleverly disguised as a mobile game.  It is Sea Hero Quest.

Of course, I had to download and give it a shot.  The point of the game is to see how you navigate through three dimensional spaces which is a skill compromised by dementia.  The game play is easy and quick.  I played through the first 5 levels and snapped a picture of a sea monster named Adorabella in just over a minute of actual game play.  I'm sure the levels will increase in difficulty but the first five are your introductory levels to teach you the game play mechanics.

My minute plus of play indicates that it is equivalent to about 4 hours of late based testing.

If you have a mobile device, check it out.

Wednesday, May 4, 2016

At the Movies

On Golden Pond
The Notebook
A Song for Martin

What do these movies have in common?  They all deal with the topic of dementia.  I've seen the first two but have not yet seen the last two.  There are funny moments but all four movies are listed as "touching."  None of these are a comedy.

Thank You for Smoking
Funny People

How about these movies?  They all deal with the topic of cancer.  Some characters have terminal cancer.  One even has Alzheimer's.  They are also all comedies.

This week, word circulated that Will Ferrell was associated to a film titled _Reagan_ which was described as "an Alzheimer's comedy."  There was a tremendous amount of negative and immediate criticism directed towards Mr. Ferrell.  At the time that this was swirling, the primary plot point which surfaced is that he would portray President Reagan at the start of his second term with dementia symptoms already in play when an intern convinces him he is an actor portraying the president.  The criticism decried the movie and the actor as callous and disrespectful towards the late President Reagan, other individuals with Alzheimer's and their caregivers.

But, is it?

Is the film actually what the criticism claimed?  Is there honestly nothing funny about Alzheimer's?  Was the mistake that the screenwriter included such a recognizable individual with living family? How would the film have been received if the presidential character was ascribed another name?

Personally, I think there could be a comedic movie which involves Alzheimer's as a primary theme.  Goodness knows that we've laughed ourselves to tears over things that Lyn has done or said such as her advise to me that the police will arrest me for having sex with my husband.  Every caregiver that I've spoken to has wonderfully funny and touching stories they can tell about the person they've cared for.  Sometimes, those stories are uncomfortable while also being funny such as the story Jim Breuer tells of hosing his father with dementia down after he soils himself in the car.

Why should Alzheimer's be such a sacred topic that we can't include it in a comedy?

Tuesday, May 3, 2016

Anticipating a Storm

As the rain and thunder shake my house, I am reminded of an email note from Mom a few days ago.  She wrote:

"Dinner's late but she's wide awake.  It's dark and cloudy and Nikka is a bit shaky.  They are sitting here watching me.  Lyn said "Know what?  She wants me to sleep out here with her since she's scared."

Mom laughed and advised that Lyn could sleep on the couch to keep the dog company when Nikka asks Mom.  There was no thunder or lightening even though it was anticipated.  Both Lyn and Nikka were able to sleep well.

Monday, May 2, 2016

Witnessing Discrimination

On Saturday, Lyn went bowling with her respite provider and another client.  They like to go bowling together because the two clients get along well and both enjoy the activity.  At the end of the activity, Lyn went to the counter and asked to have a printout of her scores as she does each time she bowls.

The other client asked if her scores could also be printed out.  When the other client went to get her scores printed, the individual behind the counter told her they didn't do that.  If she wanted her scores, she needed to write them down.  Lyn was confused because she had her scores in hand.  She tells me she felt like she had done something wrong.

Lyn's respite provider realized that the other client had just been discriminated against.  Lyn's blond and blue eyed.  The other client is Hispanic.  The respite provider went to the counter and spoke with the bowling alley manager, pointing out the blatant discrimination and the unacceptable actions taken by the employee in question.  The manager apologized and provided the other client with a printout of her scores.  However, the respite provider made it clear that they will not return to that particular alley for bowling in the future.  There are a number of alleys in town and they have options.

After the conversation, Lyn asked if she had done something wrong.  Lyn knew her respite provider was very upset and she was afraid she had been the cause of it.  Lyn calmed down when she was assured that she had done nothing wrong.  She was advised that the bowling alley had not treated everyone nicely or in the same manner.  This made Lyn upset but she's accepted the explanation that the problem has been addressed.