Monday, December 31, 2012

Closing Out 2012


This past year with Lyn has been interesting.  

She went through more tests and evaluations and was finally, officially diagnosed with early on-set Alzheimer's disease.  (We still disagree with the psychologist's finding of agoraphobia, however.)  She's exhibited many changes this year and shows us that her changes are happening at a rapid pace.  This is typical of early on-set Alzheimer's.  

With the rate her changes are happening, we really cannot even speculate as to how she will be in six months from now.  So, we'll take each day as it comes and look for those moments when we can watch her laugh at Nikka or where we can laugh because of something she's done.  Those moments really are treasured because they lighten an otherwise challenging day.

What I do know is that in 2013, Mom and I will continue to speak several times each week.  I will continue write Dementia be Damned and look for Alzheimer's news to share.  Mom really shoulders the burden of Lyn's care and I will continue to do what I can to help.  Some days, it feels insufficient.

I'm proud of my Mom for all she does for Lyn.  I cannot imagine the difficulty of watching your child struggle with a terminal disease, knowing your child will die before you.  Mom knows what she's facing as she dealt with much of this with my Grandmother in the 1990's.  The ironic part of our conversations about Lyn and what she's experiencing is that we find commonalities.  There are behaviors that my 41 year old sister with Alzheimer's has in common with my 6 year old child who has PTSD.  These commonalities never cease to strike us and we find that they allow us to understand each other and our daily lives a bit better.

So, as 2012 comes to an end, I hope you will continue to read and share Lyn's journey with us.  It amazes and pleases us greatly when someone comments on something they've read here.  Thank you for that.

May the New Year bring you happiness!



 

Friday, December 28, 2012

Wintery Beach



Virginia Beach - mid 1990's
Even the cold wind off the Chesapeake Bay could not stop Lyn from watching the waves.  She's always been drawn to the water.


Thursday, December 27, 2012

Cavalier

When we lived in Virginia Beach, Mom and Lyn came out to visit us at Christmas a couple of times.  One of the things we liked to do was visit the beach front even in winter.  While the majority of the shops were closed, there are a number of places that stay open all year.  One of them is the Cavalier Hotel.

It is a grand old hotel that was built in the mid-1920's.  Decades later, a sister hotel was built across the street.  Annually, the chefs for the hotels work together to build a gingerbread version of the original hotel.  The gingerbread version is truly impressive at nearly five feet to a side.


Lyn enjoyed going to the hotel to look at this creation.  She would exclaim over the details, pointing out the different candies she could recognize and the different details around the display.

This is one of the pictures that Lyn took during one of our visits.

Wednesday, December 26, 2012

Human Anatomy

Buying presents for Lyn is always a challenge.  She used to like math work books and puzzles.  She has hundreds of pencils and dozens of shirts.  She's particular about what she likes and obvious about what she doesn't.

We usually start pretty early in the fall asking what she'd like for Christmas.  She would tell us her desired gifts and we'd take note.  It was usually one of the items listed above so it was pretty easy even if it was repetitious.  Then there was the year in the mid 1990's that she announced she wanted a book about the body.

I asked several times to make sure that I understood her correctly and she remained steadfast in her desire for a book.


And that's exactly what she got.  She was happy.

That was actually a good year for her as far as presents were concerned.  She was happy with all she received.  She still uses that robe and eventually wore out the Tigger slippers.  She still has the book though I don't think she looks at it any longer.

Update:  This year was also good.  She was pleased with her presents and seems to particularly like the stuffed PBR bull that I found for her.  Dementia is making her harder to buy for, but she was giggling over the toy while telling the dog "No.  This is mine!"

Tuesday, December 25, 2012

Merry Christmas

Christmas 1989
May today fill your home with peace and happiness.
May the obstacles in your path be cleared.
May you find joy and love in those around you.

From my family to yours,
Merry Christmas!

Monday, December 24, 2012

Define Long-Distance

Yesterday, Mom, Lyn and I had our regular Skype conversation.  Lyn was a bit put out and decided to express her discontent.

Mom had a phone call from a friend in Scotland the night before.  Lyn was watching TV and Mom took the call into her room for a little privacy.  This made Lyn mad.  She was angry that Mom was "tying up the line."  She didn't want Mom to talk in the other room.  She wanted Mom to sit with her while she watched TV.  Lyn's gotten a little more cantankerous when Mom's on the phone with me.  She'll frequently tell Mom that I'm "tired and must go now."  It is her attempt to get Mom off the phone.  Lyn prefers to be the center of Mom's attention at all times.

I asked Lyn if she new that our phone calls were long-distance.  She told me that our calls were "sometimes long-distance."  I asked if it was OK for Mom to talk on the phone or if that bothered her.  She said it was OK.  She then went into detail how it was not good for Mom to talk on the phone to Scotland for so long because it was MORE long-distance than our calls.

Neither Mom nor I could argue with that.  We both got the giggles.  We assured Lyn that she was absolutely right.  Scotland is further from New Mexico than Virginia.  Lyn was adamant.  Fortunately, she wasn't offended by our laughter which quickly went from giggles to full guffaws.

I really enjoy these moments of spontaneous hilarity.  I'm sure that my recounting it does not do it justice.  However, when she's insistent and the demand is absurd, it is better to laugh than get upset about it.  Lyn's logic is all hers.  It doesn't have to make sense to the rest of us.

Friday, December 21, 2012

Three Day Tear

Lyn's been in a mood for the past couple of days.  Mom has no idea why but it is like Lyn's looking for a fight.  In all honesty, it is the dementia talking.  We just don't know what set her off this time.

She was happy to see our Uncle when he came for a visit.  However, she wasn't thrilled that the visit included more than just him.  Within five minutes, she decided it was her job to make sure his 4 year old grandchild didn't get into anything.  The child was very well behaved but Lyn didn't even want the child to come near the Christmas tree.

Mom's neighbor is out of town and asked Mom and Lyn to collect the mail.  The neighbor called and asked Mom to open a package to confirm that a particular item had actually arrived.  Mom opened the package and then returned it to the bag with the rest of the mail.  When Lyn put the daily mail in, she came out and got quite upset with Mom.  Mom had to calm her down before Lyn could accept that the neighbor had requested the package should be opened.

Last night, when I called to check on them, Lyn announced to Mom that I was "tired and had to go."  This announcement is usually reserved for after Lyn's had her conversation with me.  During this call, she didn't want to talk to me and kept pushing for Mom to get off the phone.  Mom acknowledged to Lyn that she was right because I was yawning and clearly tired.  However, we kept talking.

On days like this, Mom tries to confirm to Lyn that she is heard and her comments are understood.  She tries to redirect Lyn and to not respond with anger.  It is hard though to have someone being so openly critical and attempting to control your actions.  But, it is the disease talking and in a day or two or three, she'll be less confrontational.

Thursday, December 20, 2012

Lemon Oreos

It is the time of year when New Mexico is garnished with fresh cut pine boughs and lemon oreos.

In front of El Pinto

Traditional lemon oreos only show up on Christmas Eve and are used to light the way for the Christ Child to enter your home.  My husband likes to tease that they're just candles in bags.  Many places now use the plastic, plug-in variety to decorate with them longer into the Christmas season.

Lyn can't say luminarias and has called them lemon oreos for as long as I can remember.  The first time we remember her saying "lemon oreos" was the time we spent Christmas Eve in the long line of cars slowly creeping through one of the large graveyards in town which had been decorated with thousands of luminarias.  It was 1979 or 1980.  We only did that tour once.

When I was with Mom and Lyn last week, we went to dinner at El Pinto, a long-time family favorite.  The restaurant was covered in the luminarias and greenery.  It was lovely and Lyn was happy to pose for a picture.

We don't correct her pronunciation.  We kinda like that she calls the luminarias "lemon oreos."

Wednesday, December 19, 2012

Santa's Message

Once again, I used the services of the Portable North Pole to craft a message for Lyn from Santa.  To say it was a big hit was an understatement!

She was so excited that she was literally on the edge of her seat, nearly tipping the chair over.  Her jaw dropped when she saw that he had a picture of her and said that he remembered her from when she was little.  She knows that I asked him to contact her because the video tells her.  However, she doesn't understand that the video is the result of selecting prerecorded options.  That's OK.  She doesn't need to understand.

She gets so excited and is just so happy about these little videos that I'm happy to have this service available to use for her.  It makes her day each time she watches it.  She may not watch the classic holiday specials any longer, but this is still magic.  As long as Santa's message evokes this in her, I'll keep doing it.

Tuesday, December 18, 2012

Cha-Cha-Cha-Changes

I was with Mom and Lyn for a week this summer, less than six months ago.  Six months in the progression of early on-set Alzheimer's is plenty of time to notice differences.  Here are the differences that I noticed with this trip:

  • Lyn asks for help when having to tie her shoes.  She doesn't do it all the time, yet.  When she does, she tries to cover it by saying that she wants the knot in the center.  I don't remember a time when she actually tied her shoes with the knot in the center.  It has always been off to the side.
  • Lyn doesn't always know how to use a knife now.  During dinner, she tried to spread butter on her roll using her finger.  When Mom directed her to use her knife, she looked confused and just put the bread in her mouth instead.  While I didn't see it directly, Mom commented that Lyn is asking her to cut her food for her more and more often.
  • Lyn prefers the spoon to the fork.  When she holds the spoon, it still sits easily in her hand.  When she holds the fork, she's got it clutched in her fist and has to turn her hand to an odd angle to get the food to her mouth.  She will only use the fork on meat now.  All other food is either eaten using her hands or a spoon.  
  • Lyn's smell is becoming more pungent.  Her clothes are clean and she still bathes daily.  However, her toileting requires the fan for some time after she's done; even if it is just to urinate.
  • Lyn's speech is generally more monotone and carries less inflection.  However, she still uses a tremendous amount of inflection when talking to Nikka.  She actually almost uses baby talk to the dog.  
  • When she wants to tell you something, she rushes through it like she's trying to get the thought out before she looses the thought.  The more important the thought is to her, the more she'll rush and the more likely she is to repeat herself.  
  • Lyn's walking is even more unstable.  Her feet really slap the ground even though she's not walking quickly.  If I didn't know better, I would have thought she was stomping.  She's not aware of this change in her gait but it is like she's trying to remain firmly planted at all times.  Her movements are slower and tentative.  It reminded me of how I moved after delivering my eldest child who broke my coccyx.  She doesn't seem to be in pain, fortunately.  It is strange to see this caution combined with such heavy footfalls.  
  • She has greater difficulty getting up off the floor where she likes to sit with the dog.
  • Lyn doesn't notice if you move things away from or in front of her when she's not looking.  It is as if she assumes she took the action herself.  
  • Lyn regularly complains that her scalp hurts.  She reaches for the same general location at the top right of her head.  There is nothing there that we can detect.  There is no bump, scratch or even an infected hair follicle.  We have no idea and I wonder if it is internal.
  • Lyn's diet continues to become more restrictive.  Peas and carrots are about the only vegetable she will eat.  Chicken or pork chops (boneless) have to have no seasoning.  Plain rice, boiled potatoes or french fries are her preferred starches.  She does still each spaghetti but not as much as she has historically.

Monday, December 17, 2012

Back in the Saddle

The past few days were spent in New Mexico with Mom and Lyn.  It was a short trip but well worth the effort.  I arrived late Tuesday night and was only able to stay until early Saturday.  However, my time was primarily dedicated to Mom.  My job this trip was to just be there for and with her.

We chatted and laughed.  I washed her dog and helped clean spilled butter off the floor.  I distracted Lyn and got her to focus on me for a bit.

Lyn asked me if I wanted more placemats.  I added two to my carry-on.

She asked if she could show me her rubber stamps.  We looked at all of her large ones.  When I asked if she wanted the container with the minis, she was dismissive of them.  I waited until she went to the bathroom and retrieved the mini stamps.  She didn't bat an eye over their sudden appearance.  We looked them over and she ended up making a Christmas card for my husband.  She even used the mini stamps, many of which had never been used before.

In between, Mom and I chatted and laughed some more.  It was definitely worth the travel.

Wednesday, December 12, 2012

Growing Confusion

Lyn's confusion is growing and she's less and less likely to know what she did in her time out with her respite provider.  On Saturday, for example, when Lyn returned home, she was confused.  She knew there was a holiday dance this Thursday but she did not know that she and her respite provider had just visited the respite provider's grown daughter who wants to curl Lyn's hair for the dance.  When Mom asked what they had done during their time out, Lyn responded with "I don't really remember."

At that point, Nikka came into the house and was spinning circles in her excitement that Lyn was home.  Lyn started laughing at the dog's antics and quickly forgot the previous confusing conversation.

Tuesday, December 11, 2012

And I'm Off


I'm en route to New Mexico today.  I'm fortunate enough to work for a company which is well set up for telecommuting.  My manager and the majority of my team all work from their homes.  As a result, when I asked my manager if I could work from Mom's house, I was given approval.  So, right after work today, my husband will drop me at the airport and I'll spend the evening hours flying to Mom's.  

A year ago, I told her not to get used to a mid-holiday visit when I flew out.  I reminded her of that again this year when I purchased my tickets.  I'm not sure either of us was really listening.  As much as we enjoy the summer visit with my children and husband present, there's a different quality to the visit when it is use the three of us girls.  

Lyn's very excited that I'll be there this week.  She knows I have to work while I'm there.  She doesn't know that I'm actually taking Thursday and Friday as vacation days to just hang out with them.  We really want to keep her schedule as normal as possible because she does better when her day is as normal as possible.

Monday, December 10, 2012

All the Jumping

Yesterday, Mom and Lyn attended the performance of the Nutcracker Ballet at the Kimo Theater.  It was a big hit with Lyn.

They arrived a little early, allowing them to park in the garage less than a block from the theater.  They were allowed into the lobby and had a half hour wait before the doors to the auditorium were opened to allow guests to find their seats.  The theater staff were selling mementos related to the performance; nutcrackers of various sizes, ornaments shaped like dancers and ballet shoes.  Lyn bought a pair of socks with nutcrackers on them.  She's very happy with her purchase.

Mom writes:


When the ballet started she sat up straight and leaned forward a bit.  Our seats were perfect, last row, seats at the aisle.  She LOVED it.  She applauded when others did and oohhhed & ahhhhhed quite often.  For 2 hours, she was enthralled with it all.  When it ended, we were able to be one of the first out of the theater and headed to the car.  She was cold and the wind must have been 35-40mph.  I had parked close to the entrance so within 2 minutes, we were out of our seats and back in the car.  

On the way home I asked what she thought and she said "I loved it and want to go next year."  What did she like the best?  "All the jumping."

There's another ballet in Feb, The Wizard of Oz and I think I'll get tickets.  



Friday, December 7, 2012

TN

Mom and I both have Trigeminal Neuralgia (TN) which is usually in remission.  Mom is wading through a nasty bout currently and the pains are coming in waves.  The pains can be debilitating and interrupt every aspect of your life including sleep.

The other night, Mom had a particularly rough time in the small hours of the morning.  The stabs of pain were coming almost in time with her heart beats.  After about two hours, she was out again.  She doesn't know if she fell back to sleep or if she passed out from the pain.  When next she looked at the clock it was 8:15.  Nikka was still on her bed.  Mom got up and found Lyn already fully dressed and ready.  Mom hurriedly dressed to take Lyn to day hab.

During the ride, she asked Lyn if she had come into the bedroom to check on her.  "Yes, but I knew you needed to sleep."  Mom asked Lyn to try and wake her in the future.  If Mom doesn't wake up, she's to call 911.  Lyn got mad at that suggestion.  That night, Lyn asked if they were both going to bed early.  Mom agreed they were and reminded Lyn to call 911 if she doesn't wake up.  Lyn just grunted in response.

Mom set her alarm for a 7am start.  She was able to get up and was having less pain that day.  A few minutes later, Lyn came down the hall and spotted Mom feeding Nikka.  Lyn announced "At least I don't have to make sure you could wake up!"  She flipped around and marched back to her room.

Mom and I both laughed over this.

Thursday, December 6, 2012

Migrations

My grandparent's home was in the South Valley, right beneath the migration route for the Sandhill Cranes.  Twice a year, the cranes fly along the Rio Grande and we'd hear them calling to each other.  (That woke my dogs up.)  Our grandparents taught us to listen and pay attention when we heard their calls.  As soon as on of us heard them, the house would empty as we all would hurry outside to watch them fly on their way to winter in the Bosque or to spend the summer in Nebraska or further North.

Sandhills flying towards the Bosque.
Photo by Lauren Hurtgen.
Used with permission
  In the 1980's there was a failed attempt to raise endangered Whooping Cranes with the Sandhill population in the hopes that they would establish a new breeding colony.  During that time, we could easily spot the great white birds flying among the smaller Sandhills.  The Whooping Cranes imprinted on the Sandhills and never bred with others of their species as a result.

Lyn loves the cranes and still recognizes their calls.  The home she shares with Mom is no longer directly in their flight path but she'll still respond when she hears them.  She move to get the largest view of the sky and starts looking up.  She was delighted that she got to see several Sandhills when she and Mom visited the Bosque last month.  

Birds still engage her attention.  It doesn't matter if it is the little hummingbirds that peer in the windows after they chase off competitors, the noisy and greedy flocks of finches, the hawks, roadrunners or the cranes.  If she is aware of them, she'll watch and enjoy them.  She'll tell me about the hawk and if he's plucked his catch in their garden again.  It is pretty fun to watch her watch the birds.

Wednesday, December 5, 2012

Nutcrackers

Lyn loves the The Nutcracker Suite.  She'll put the music on and listen to it any time of year.  During December, when The Nutcracker Ballet in its myriad forms are aired, she will watch all she can as long as they're at least half-way traditional.  A rock and roll version with motorcycles just won't cut it for her.

When we were growing up, we'd catch the version with Mikhail Baryshnikov and watch it each year.


For the past several years, Lyn has been able to go to a live performance at a local theater.  This year, Mom got them tickets for the Ballet Repertory Theatre of New Mexico's performance at the Kimo Theater.   When Mom purchased the tickets, Lyn promised to not get sick.  She is looking forward to this year's performance.

Tuesday, December 4, 2012

A Very PBR Christmas

Lyn's difficult to shop for and is playing a bit coy this year.  She apparently already told Santa what she wants for Christmas.  When Mom asked her what she told him, Lyn just tells her "Let's just wait and find out what Santa brings me."  I think that's just her trying to cover that she either doesn't know what she wants or doesn't remember what she has requested.  We do know she's asked for a pencil.

There's a part of me that feels like I should get Lyn more for Christmas than what is on its way.  There's another part of me that recognizes that she's actually going to be thrilled about her Christmas gifts.  Well... I hope she'll be thrilled.

Lyn has a deep love for the PBR and all the riders.  She keeps her signed programs from previous PBR events in Albuquerque easily accessible and can get them out in a flash.  Knowing this, Mom suggested we get Lyn a PBR shirt for Christmas.  I've ordered one and hope it arrives in time.  However, I wasn't sure that a single shirt was a good enough gift to make her happy.

Much to my surprise, the PBR doesn't currently sell plush bulls.  It just seemed like an obvious piece of marketing to me.  I'm not in Marketing so my opinion is irrelevant to a company looking to make money.  However, I did find one from an earlier year with its original tags still attached available on ebay.  It should arrive in time for me to take it to NM before Christmas.

Fingers crossed that she likes her PBR Christmas gifts.

Monday, December 3, 2012

TEASC Check In

After Lyn's visit with the neurologist last week, a member of the TEASC committee happened to call and check up on her.  The committee had committed to checking with Mom "in a few months" to see how things were going and how they could be of additional service.

The caller was the therapist on the team.  She asked if Mom had questions.   Mom let her know that Lyn was doing OK.  She has good days and bad days.  Mom did raise the question about the agoraphobia diagnosis.  The therapist said that she didn't know why the previous diagnosis of atypical Sundowner's was dismissed in place of a diagnoses of agoraphobia.  "Perhaps the team misunderstood" what we were telling them.  Lyn's not afraid to leave the house or engage in social situations.  In fact, she is quite the opposite.  She's out of the house 6 days a week and looks forward to going out.  Lyn becomes uncomfortable and somewhat anxious when out after dark.  The therapist agreed that this didn't sound like agoraphobia.

The therapist has promised to check with the team and call back.  Mom wants to get this corrected because, based on this report, Lyn's primary health care provider is listing agoraphobia as the diagnosis having deleted the Sundowner's diagnosis.  She explained to Mom that she defers to this committee's findings even though she doesn't agree with it.  The impact of this is that it could substantially change how the State manages Lyn's case.