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.