Friday, August 31, 2012

Workbooks

Over the years, Lyn has gone through many, many workbooks.  She particularly favored math workbooks.


She would sit for hours writing in them and placing numbers in the answer spot for the exercises.  Very rarely, if a question as a simple equation like 1+1, she might actually get it right.  At other times, as in this picture, she would just copy words or names down from other books.  There was a time when we knew where every teacher supply store in town were located.

She no longer works on her workbooks and no longer asks for them for her Birthday or Christmas.  It is just another change in her behavior and another lost skill.

Her bowling continues, however.  


Thursday, August 30, 2012

Recent Clinical Trials News

Numerous clinical trials are being conducted to test different potential treatments for Alzheimer's Disease.  The trials are a necessary step to determine if a treatment is not only effective, but also safe.

Recently, a clinical trial for Bapineuzumab by Pfizer and Johnson & Johnson had to be stopped because it was found to not be effective in improving cognitive functions any more than a placebo could.  Bapineuzumab was designed to treat mild-to-moderate Alzheimer's.  It was controversial because the patients being treated were already fighting the disease.

A similar drug, Solanezumab by Eli Lilly has also failed to slow cognitive decline in late stage clinical trials.

Another drug in clinical trials is Gammaguard by Baxter.  It is an immunoglobulin liquid which is approved for treating immune deficiency disorders.  It is currently in an early stage trial which will last another three years.

Gammaguard or another drug may one day prove effective and make it through the trial process.

Wednesday, August 29, 2012

Frustrations

Mom writes:

I keep thinking about others, all of a sudden, becoming "hyper" about Lyn's symptom's.  The team at UNM, I'm willing to bet, will decide she doesn't have dementia or sundowner's.  They kept saying "Atypical" symptoms.  They seemed to be hung-up on the fact that here at home she didn't exhibit sundowners.  No, but some day she will.  Just because she doesn't do what is "normal" for most dementia patients doesn't mean she doesn't have it.  The medical establishment HATES to think that someone doesn't fall into the box they have established for a condition.

But all this is like a re-run for me.  The last couple years of mother's life was filled with dementia & sundowner's.  She was fine for one minute then some place else the next.  It wasn't until after about 4-5 years that she exhibited signs of sundowners at home.

  One evening we were coming home from a friend's house.  Mom had lived in Albuquerque most of her life.  She and Dad moved back here in 1946 and never left, living in the same home since 1947.  The route I was taking was one she and I had used for MANY years.  I was driving west and she insisted we were going north and would end up in Santa Fe.  I promised her we would be home within 10 minutes and I was going west.  She said she doubted it but as long as I knew that when we stopped she was going to say "I told you so."  Ten minutes later, when I pulled up to the gate and got out and opened it, she still insisted we were some other place.  I got her into the house, into her room and all was well.  No, I didn't say "told you so."   She was fine, knew where she was and insisted I had turned around "some place".  I knew when to keep quiet.

I see things like this with Lyn.  Perhaps it is Atypical.  I have said for 40 years that she is herself.  She has challenges but was never put in a cubbyhole.  Just because "most" people do something one way doesn't mean they all will.  Just because her sundowner's hasn't kicked in at home doesn't mean it won't.  I believe it will - one day.  

I am frustrated with the medical establishment, with a case manager who now seems to be back-peddling on all this.  I'm frustrated!  Maybe it's just that she "didn't read that chapter in the medical books" as a pediatrician once told me.  She's just Lyn.

Tuesday, August 28, 2012

Atypical

During Lyn's evaluation with the TEASC team at the University earlier this month, one descriptor which was used a couple of times was "atypical."  It was stated that Lyn's Sundowning symptoms are atypical because she gets agitated when she's out of her environment in the evenings but is calm at home.  This thought has stuck with me a bit because we don't think of her symptoms as atypical.

For us, Lyn's pattern of symptoms matches those exhibited by my maternal grandmother.  Grandma also started showing agitation and a desire to return home if she was out in the late afternoon or evening.  If she was to go out for dinner, she made sure it was an early dinner at about 4pm.  She stopped going to Mass in the evenings and stated she preferred morning Mass.  However, if she was in her home, she was calm and comfortable.  Then it changed.

One evening, after dark, Mom received a call from her eldest brother demanding to know what was going on.    (At this time, Grandma was mostly bedridden and Mom was her primary care provider.  She did that while also maintaining a full-time job.)  Mom commented that nothing was going on... "Why?"

It turned out that Grandma had called him to ask for his help.  She was scared.  She had been kidnapped and didn't know where she was.  She was very worried because her clothes were there and she didn't know what that meant.  She needed him to come get her and take her home.  

Mom assured her brother that Grandma was in her room watching TV just like she did each night before going to sleep.  Mom also assured him that she would go in and check on her.  They hung up and Mom went straight back to Grandma's room.  She was in her bed watching TV with the lights off.  Mom asked her if she was OK as she turned on the lights.  Grandma stated that she was fine and Mom says her body language indicated she was relaxed and comfortable.  Mom asked if she had spoken to the brother recently and Grandma stated she had not.  Grandma had no recollection of a call she had just placed.  From that point on, Grandma became agitated in the evenings in her own home.  Eventually, she had to live in a small nursing home where she received excellent care until her death three years later.

Lyn hasn't had that change yet.  However, we do anticipate it.

Monday, August 27, 2012

An Impromptu Adventure

Yesterday, Mom and Lyn went to breakfast with their neighbor.  The day was beautiful and Mom knew none of them had any set plans for the day.  Their neighbor is a lovely lady who is ready to jump in the car at the word "go" like Lyn.

On the way home, Mom turned towards Rio Rancho instead of continuing straight to their neighborhood.  Lyn and the neighbor were convinced that Mom had gotten confused about where they were going.  Mom had an impromptu idea for them to go to Jemez.  They thought it was a great idea.

When they go up into the Jemez area, they chanced upon a farmer's market.  Mom pulled in and they all got out to peruse the offerings.  They ended up buying corn, zucchini, yellow tomatoes and onions along with a fresh apple pie which was still warm from the oven.  The woman who sold them the pie had picked enough apples that morning to whip up six pies.  Lead by their noses, they walks "across the way" where they found fresh fry bread which they added to their haul.

From there they drove on into the village and beyond to Soda Dam before turning around to return home, stopping at the Visitor Center on the way back through.  Lyn was in a good mood and kept talking about how they "need to do Santa Fe."  For Lyn, this means driving up in the morning, doing some window shopping and having lunch before returning home.  Mom promised they would go to Santa Fe before it gets too chilly to enjoy walking around the Plaza.

Thursday, August 23, 2012

In a Different Time Zone

I think Lyn has shifted to a different time zone.

Lyn and Mom attended church at their old parish because their current parish was hosting their annual fiesta.  The fiesta is a pretty big event and lots of people who rarely attend come participate.  It is a busy, packed time for the church which Lyn does not enjoy.

While at their old parish, Lyn was content and comfortable.  She told Mom she wanted to go to that church instead of their current parish where she's been increasingly lost and uncomfortable.  The old parish is the familiar one now.

Mom has thought about it and decided it may be for the best if they switch back.  It is not a significant distance to drive and Mom has been stepping back from her responsibilities with the church because of the needs of caring for Lyn.  If Lyn is more comfortable in one building instead of a different one, then there is value in that change.

On a slightly different but closely related note, Lyn is distraught over her PBR hat.  She left it at the home of her respite provider.  Her respite provider tried to bring it to Mom but appears to have lost it en route.  Lyn is bouncing between anger and sadness.  It was her favorite hat and the only one Mom can get her to wear in the sun.  She does not think this is "an Oh Well."

Lyn has had the hat for a couple of years having purchased it at one of the bull riding events there in town.  I've checked ebay and currently there are none available that matches her lost hat.


Wednesday, August 22, 2012

Her Long Wait

Lyn has waited for nearly a decade to get her revenge on me for the Busch Gardens prank.  Her ire would be raised anytime she was reminded of my prank.  Each time, she swore anew that she would get me one day.

I have no idea what precipitated her attempt, but she finally decided she had a way to get back at me.  She and her respite provider were out and about when Mom picked us up from the airport.  When their time together came to a close for the day, they returned home where we were already waiting.

Lyn walked in, about to burst.  She was already giggling and backing up against a wall.  Her respite provider had to take the lead and describe how they went out to lunch before going to their tattoo appointment.  Lyn had tears streaming down her face through her laughter.  She just knew she was getting back at me good.

Lyn stopped squirming long enough to reveal a mandala tattoo on her arm, a flower on her ankle and a couple of hearts on her lower back.


I made a fuss about her "tramp stamp" and she squirmed and giggled all the more.  

She was so proud of pulling a brilliant trick on me.

It was a long wait, but Lyn felt she had really gotten me good.

Tuesday, August 21, 2012

A Splash and ...

Nearly a decade ago, Mom and Lyn visited us in Virginia Beach.  One of the scheduled activities was a trip to Williamsburg to enjoy Busch Gardens.  It was a hot and sticky Virginia Summer day.

As we approached the Escape from Pompeii ride, a boat ride with a huge splash finale, I realized there was an opportunity to pull a prank on Lyn.  She wasn't paying much attention and there was several minutes between each boat's plunge down the last slide.  At the bottom of the slide, there is a viewing area which juts out quite far into the water.  If you stand there, you will get drenched.  I had been to the park before and knew this.  So, I convinced Lyn to come to the viewing platform with me, asking people to step aside so my sister could watch the boat slide down the ramp.  Amazingly, no one said a word to stop me.  They moved aside, letting Lyn get right up to the railing, my hand on her shoulder.  There were some knowing smiles shot back and forth, but the other guests quickly joined in on the joke.

The doors at the top of the ride opened.  I took my hand off her shoulder and pointed out that the boat was coming.  It was time to watch it come down the slide.  She turned to look and I ducked out of there as fast as the crowd would let me.  Mom and my husband were off to the side, watching and waiting.  They knew what I was up to.  The boat hesitated at the top of the slide and then plunged.  I had timed it particularly well as there was a rather large gentleman in the front seat of the boat.  It hit the bottom and a wall of water erupted out, soaking Lyn to the bone.  She turned, furious and sputtering.  I was clutching my sides, howling with laughter.  The crowd around Lyn was squealing and laughing.  Mom and my husband were as well.

Lyn could hardly speak through her rage.  Mom pointed out that at least Lyn was cooler now that she was wet.  She was mad that I had tricked her.  She was mad that her clothes were dripping and her shoes were squelching.  The more I tried to apologize, the madder she got.  The madder she got, the more I couldn't contain my giggles.

As we continued around the park, she wouldn't talk or even stand near me.  She decided she had a grudge and that she would one day get revenge on me for tricking her like that.

Her wait began.

Monday, August 20, 2012

Sandia Mountain Trip

While we were in New Mexico, we took a trip just out of town to the other side of the Sandia Mountains.  We had learned of the Sandia Mountain Natural History Center which is affiliated with the New Mexico Museum of Natural History and Sciences and the local school system.  The center provides an outdoor classroom for all of the fifth graders to visit each year and is only open to the public about two days a year.  We happened to be in town for one of those days and made the trek out.

It was easy to find and the location is beautiful.  The East side of the mountains is a long, steady slope.  The West side of the mountains is a jagged wall from the uplift that created the range.  The center is on the East side.  There are several buildings and several miles of well defined hiking trails.



When we arrived, we were surprised to learn that one of the paleontologists from the museum would be providing a lecture on the Ice Age Mammals that lived in New Mexico.  We had some time before the lecture started and he graciously spoke with us about the fossils he had brought with us.  He invited us to stay and listen.  I was game.  Unfortunately, my companions were not interested in sitting through a lecture.  Instead, we decided to follow one of the trails for a while.


Lyn enjoyed herself despite not wanting to follow the path for more than about 10 minutes.  I don't think she ever let the buildings of the center out of sight.  When half of our party decided to turn back, the rest of us continued on for a few more minutes, finding a scenic outlook area and open-air classroom at the top of a hill.  It was lovely.

We were investigated by several hummingbirds who hovered a few inches from us.  They would dart away before we could get a picture of them.  This fine fellow stood still long enough for a portrait, however.


Friday, August 17, 2012

Been A While

I spoke with Mom and Lyn last night to see how their week has been going since our return home.  It was a busy week and Lyn's schedule was pretty much out the window.  This week, her schedule is still different because her respite provider is starting classes at the University again and having to switch away from her summer schedule to her more restricted academic schedule.  These two weeks are causing confusion with Lyn as these changes are difficult for her to keep up with.

On Wednesday night as Mom was reviewing what Lyn would need for her day hab field trip to the zoo, Lyn was unable to find her PBR hat.  She wanted to wear it to keep the sun out of her eyes.  It turns out she had forgotten it with her respite provider Friday night.  Lyn wanted to get in touch with her right then to retrieve the hat.  Mom explained that was not possible.  Lyn was very out of sorts.

Over the course of the evening, she asked Mom numerous times why her respite provider would not be able to take her bowling Thursday.  Mom and the respite provider have been telling Lyn for a couple of weeks about the change in the respite schedule and the start of school.  Lyn can no longer keep the thought in mind.  It is not connecting.  Yesterday, Lyn asked early in the morning if her respite provider would take her to bowling in the afternoon.  Mom had to explain several more times that the schedule has changed.

Once at day hab, Lyn was excited to go to the zoo.  She had told Mom a couple of times that she had not been to the zoo in a long time.  When I spoke to Lyn on the phone, she was excited and wanted to tell me about her trip to the zoo.  I asked "When did you last go?"  Lyn replied "It has been a while."  She then proceeded to tell me about seeing the baby monkeys and the black leopard and eating lunch at the zoo.  I asked "Have you eaten at the zoo before?"  "Yes!  It was a long time ago."  I told her that it sounded like a very good day.

We went last to the zoo Tuesday while in town.  We ate our lunch at the cafe in the middle of the zoo and rode the train over to the aquarium for an hour before returning to the zoo where our car was parked.  Lyn was with us the full day.  She even cried on the return train from the aquarium to the zoo. I did not remind her of our recent visit.  After speaking to her, Mom came back on the line and confirmed that Lyn has no recollection of last week's zoo trip.

After the zoo, Lyn did go bowling.  Her second game was quite good.


Thursday, August 16, 2012

Meeting Stan

Lyn decided to not attend day hab or spend much time with her respite provider while we where there last week.  It was important to her that she spend time with us and join us in the various activities.  That was just fine with us because we were there to visit her and Mom.

On Wednesday, knowing that we were expecting company in the afternoon again, Mom decided she needed to stay home while we went out.  I had seen that the New Mexico Museum of Natural History was hosting an exhibit to highlight the 100 years of dinosaur discovery in the state and wanted to visit the museum.  It had been several years since the last time we were there.  Lyn was happy to join us, leaving Mom to a quiet morning with the house to herself.

We arrived at the museum and Lyn wanted to pay for her own ticket.  I let her know that it would cost her $7.  She counted out $5 and started to put away the rest of her cash.  The cashier looked confused and I reminded Lyn that she needed $2 more to get in.  Lyn was a little confused but pulled her money back out and started pulling out $1 bills until I told her to stop.  She stepped off to the side to wait for us to pay our admissions fees.  Moments later, we stepped into the atrium and met Stan.


Stan is a Tyrannosaur Rex skeleton from the Black Hills of South Dakota.  He is the largest and most complete male T Rex found so far.   While he was not found in New Mexico, he is representative of the T Rex fragments and incomplete skeletons which have been found there.  Lyn was unimpressed.  She stood by and patiently waited for us to stop staring in wonder at Stan.  She wanted to move.

The museum wasn't too busy that day and we had plenty of room to move around and enjoy the exhibits without tripping over other visitors.  We went into the Naturalist Center and were disappointed to learn the docent there at the time was uncomfortable handling the snakes.  From there, we went through the anniversary display and stopped to watch an employee in the FossilWorks area, a bone prep lab.  The lady stopped her work and brought out the specimen to show us.  It was the lower left mandible of a Motoposaur and it was nearly 3 feet long.  A Motoposaur was an amphibian similar to a giant salamander.  Lyn wasn't too impressed with this either.  The rest of us were delighted!

We continued our tour of the museum.  When we arrived on the second floor, we were looking at a replica of the Mars Rover when another employee invited all the museum visitors in that area to head out to the observatory where a telescope was set up for solar viewing.  Lyn was interested and we went into the observatory.  There were a couple of families ahead of us, including one with another intellectually disabled family member.  We all filed into the observatory and inched our way up the stairs to the telescope's platform.  Lyn found the stairs difficult to manage but the double rails and my hands behind her kept her stable.  Three community science outreach members were present, talking to everyone about the Sun and its relationship to the Earth.  Even our smallest member was addressed and given an opportunity to see the Sun and its spots.

Once down, we started wending our way out through the last few exhibits, saving the volcano for last.  Lyn didn't want to go in the volcano.  So, she and I found a bench to wait for the rest of the family.  Lyn knew we were going to meet Mom for lunch in Old Town and was ready to go.  I'm not sure she was comfortable with the lighting and noise of the volcano exhibit either.  That was fine.  I've been through the volcano more times than I can count.

We had a great morning at the museum.  Lyn was pretty patient with us as we examined the various exhibits and sometimes provided her own commentary.  Sometimes, it is hard to impress Lyn.  This is too bad because some things are worth being impressed over.


Wednesday, August 15, 2012

Pacing Visits

Since my family and I are only able to return to New Mexico for a week's vacation each year, we've typically packed as much into the eek as possible.  We would try to arrange a barbecue or dinner party to invite groups of friends or family over for a concentrated visit.  We really can't do that anymore with Lyn.  She gets too agitated and we risk a breakdown.

This year, Mom arranged four visits with only a couple of people each to allow us to see friends and family while not overly stressing out my sister.  It was a challenge for Mom to arrange all these visits, but it was worth it.  The side effect was that we were unable to travel outside the city to do any day trips as we had hoped.  The sites will be there for future visits, however.

On Sunday, Mom hosted two dear friends of mine who, surprisingly, had never met each other before.  They went to different schools, but my friendships with them had overlapped.  It was a pretty relaxed evening and Lyn was in good form.

On Wednesday, our cousin and his children were able to visit.  We missed seeing his wife who was home ill.  Their visit was complicated by school having already started for the children.  Lyn did pretty well.  However, she disappeared at one point to bathe and get ready for bed.  Her evening was over as far as she was concerned.  As the evening progressed, she was increasingly agitated, but she kept it together pretty well.

On Thursday, we were visited by Father T.  He's a long-time family friend and our family's former priest.  He's retired now.  One of the local nuns with whom he's good friends also joined the visit.  This visit was for a couple of hours in the early afternoon.  Lyn was happy to see Father T and Sister.  After initial hugs and kisses, she sat and listened for a little while before heading to the table to color for the rest of their visit.

On Friday, one of our uncles visited in the afternoon.  He's one of Lyn's favorites and she was happy to see him.  Lyn had decided to keep her normal Friday time with her respite provider and left before our uncle departed.

This was the first time we had to really spread out the visits with friends and family.  There were, of course, others who we would have liked to visit with, but time and schedules didn't always allow for it. As much as we would like to see them, keeping Lyn from a situation we know will result in a breakdown is our priority.

Tuesday, August 14, 2012

Evaluation

On Thursday, Lyn was evaluated by a team associated with the University of New Mexico's Transdisciplinary Evaluation and Support Clinic (TEASC).  It was a very interesting experience and one in which Lyn was fully engaged.

When we arrived, Lyn went through in-take just like any patient visiting a physician.  Her vitals were checked.  Her blood pressure was in the normal range with a reading of 100/80.  Her weight indicated she had lost 10 pounds of weight since her last weight check about 6 weeks prior.  Mom indicated that the weight loss is mostly attributed to small changes such as limiting Lyn to one soda a day and not having dessert every day.  The weight loss was widely praised and Lyn was beaming as a result of all the positive attention.

In addition to Lyn, two of her team overseeing her participation in the DD Waiver program, Mom and I attended.  We were escorted up to a large conference room where the evaluation organizer asked Lyn if she was comfortable inviting medical students in to observe the evaluation.  Lyn gave her permission.  She was very clear in her statement that she was comfortable with them participating.  A few minutes later, a large group of staff and students joined us.  The group consisted of the program director, a physician's assistant, a psychologist, a neurologist and a dental hygienist.  Accompanying them were five students which included students of nursing, pharmacy, dental hygiene and two medical students.

The program director initiated the conversation by asking everyone in the room to introduce themselves.  We went around the table.  When Lyn introduced herself, she stated her full name followed by "... and I'm the center of attention!"  She was thrilled to be the center of attention for such a large group.

After introductions, the program director started with Lyn's case manager and asked her to talk about Lyn's strengths.  She described Lyn as having a good sense of humor, social and active with bowling or out in the community.  The next member of Lyn's team described her as thoughtful, giving and creative.  When it came to Mom, she described Lyn as helpful and willing to offer advice.  At this point, the evaluation evolved into a conversation in which multiple examples of Lyn's memory challenges were highlighted.

Lyn's sundowning was discussed as was the more recent changes we've documented here for the past year such as the loss of ability to change the preset car radio station, to turn on the washing machine or, most recently, to open her bowling bag to locate her ball.  During these examples, Lyn demonstrated crabbiness, non-sequitors and adamant story telling.  She was engaged and trying very hard to participate and offer her own examples.  At one point, Lyn stated "For a lot of years, I've been doing what I want to do." This was said in context of her decision to quit working for Wendy's.

A classic example of Lyn was up for consideration when she stated that "A month back, Mom got me a bike..."  That month back happened three years ago and Lyn hasn't ridden the bike in two years.  I had to smile at this because this lack time tracking has always been there with Lyn and it never fails to evoke this response in me.

At one point, the psychologist decided to explore the possibility of Lyn being depressed.  We stated that Lyn is not depressed and is a happy person, waking up motivated for the day.  The psychologist asked Lyn directed if she "...ever gets sad...".  Lyn stunned us all by saying "I don't want to talk about it!" and bursting into tears.  Lyn took a couple of minutes to compose herself and then kept her head down on her arms for a couple more minutes.  Lyn is not depressed.  She is, however, very susceptible to suggestions and had an audience.

The evaluation continued for a total of two hours.  Towards the end, it was asked if Lyn was on any medication for the memory problems she is exhibiting.  We confirmed that she was not.  Lyn has expressed a desire to not have the medication and Mom doesn't see the point to putting her on something that is not going to help.  It was asked if Lyn is on Vitamin D supplements and noted that D3 is available in liquid though it is hard to find.

It was also asked if any genetic testing had been done to determine if Lyn actually has a genetic condition causing her intellectual disability.  This question is an interesting one.   At one point, it was theorized that Lyn might have Fragile X Syndrome.  Genetic testing has never been done on Lyn because of cost and because we've actively worked to make sure she never got pregnant.  The team pointed out that if there is a genetic basis to Lyn's current state, that it may be predictive of what her progression will take over the coming years.

I had intended to ask a couple of questions of the TEASC team while there and the questions fled from mind during the evaluation.  I would have liked to ask:

  • Should Lyn's neuro-psych evaluation have been conducted using tests geared for the intellectually disabled instead of a normative population?  
  • If there is early on-set Alzheimer's, would anything significant be visible in the MRI of her brain?  (The MRI done a year ago shows nothing of note.)  
  • Would there be value in repeating either of these tests to see what changes are notable in the year since they were last done?

I have asked Mom to forward these questions to her TEASC team contact.

The term "atypical" was stated several times, particularly by the psychologist who indicated that Lyn's sundowning symptoms are atypical.  Lyn gets agitated outside the home in the evening; but not when she's in her own environment.  Apparently, this is atypical.  We found this surprising because this is also how Grandma behaved when her Alzheimer's began in her late 70's/early 80's.

After two hours, the evaluation ended.  The TEASC team will evaluate Lyn's file and their notes from Thursday's evaluation.  They will report their findings and suggestions.  This report will be shared with us in a few weeks time.  I will update you all when I have the report sent to me.   I am very interested in reading the team's report and appreciate the time they gave us.


Monday, August 13, 2012

Gold and Silver

I just spent a week with Mom and Lyn.  It was a good week and I'll catch you up on it over the next couple of days.  However, I wanted to share something with you that I found as I was packing to return home.  My eldest slept in one of Lyn's two rooms.  When I went in to double check that all of my child's belongings were accounted for, I found a number of pictures sitting scattered across the dresser and around her television.  These two were in the mix.


In 1992 or 1993, Lyn won another gold and silver for her efforts in the Summer Special Olympics games.  I was off to college at that time and had never seen this picture until finding it this past weekend.  Lyn's smile is so big and genuine here.  She's proud of her efforts and happy to pose for the camera.

In 1998, Lyn was New Mexico's first female athlete to compete in the pentathlon.  The Special Olympics pentathlon is comprised of the 100m sprint, long jump, shot put, high jump, and the 400m run.  The event takes endurance, strength and flexibility.  Lyn had all of those traits as an athlete in her 20's.

She was the only female athlete in the pentathlon that year.  She competed and took the gold and was just as proud of that as she was of any of her other competitions.


Friday, August 3, 2012

Taking a Vacation


Tomorrow, my family and I fly out to New Mexico to spend a week with Mom and Lyn.  I'm mostly disconnecting from my daily demands and spending the week focusing on them.  I will be back with more stories, pictures and updates of dementia in the news after we return.  Anticipate a new post on Monday, August 13.

As always, if you think of something you'd like us to address, just drop me a note via email or  add in a comment.  I will be sure to respond when I'm back from the land of sunshine and good chile.

Enjoy your week.  We will enjoy ours.

Thursday, August 2, 2012

Giving Yourself Permission

Caregivers often don't give themselves permission to enjoy their live outside of caring for their loved one.  For many reasons, they may put their lives on hold.  There may be logistics problems with coordinating a back up care provider.  There may not be a back up care provider.  The caregiver may have a feeling of guilt when engaged in an activity that doesn't directly pertain to the care of their loved one.  However, this adds stress to the caregiver and makes the job of providing care that much harder.

Caregivers need to give themselves permission to continue as much of their lives as possible.  The Caregivers Support Network offers up this set of oaths that are geared for the caregivers about themselves.


CAREGIVER CODES

Take Care Of Myself

Seek Support

     Accept Help
       
Get Answers
  
Stay Open To Change

  Be Satisfied With Doing My Best

Enjoy Time Away From My Loved One, Without Guilt

Maintain Relationships With Friends, Family, Co-workers & Community

Set Goals, Pursue Dreams And Remember To Live My Life


If you are a caregiver, please consider caring for yourself just as important as the care you provide your loved one.

Wednesday, August 1, 2012

A Singular Moment

My eldest's birthday is rapidly approaching and will be celebrated with Lyn while we visit.  This thought made me recall the  time when I told Mom and Lyn that I was pregnant.

They had come to visit at Christmas and I had to explain a change in our planned activities for the week.  I had a doctor's appointment scheduled that conflicted with our original plans.  Mom was shocked but quickly recovered into delight.  Lyn seemed to take it in stride.

A couple of days later, I had the appointment with my doctor.  The nurse ushered me back to the exam room where an ultrasound was performed to confirm my pregnancy.  I did the math and realized that this ultrasound was probably going to be the only one that Mom and Lyn would be able to see during my pregnancy.  So, I asked the nurse if they could join me.  She kindly called my family back when she let the doctor know that I was ready.

Mom, Lyn and my husband were quickly escorted into the room.  Before the door closed, another face popped it.  It was one of my former roommates, a good friend.  She was leaving and encountered my family in the waiting room.  They grabbed her and brought her along for the exam.  The nurse stood to block her and said "You can't be in here!"  She wasn't one of the people I had identified after all, and the nurse was protecting her patient.  We immediately assured her it was OK.  She was family too.

They all squeezed in and the doctor quickly came in as well.  They had to squeeze in around the exam table that I was stretched out on.  The doctor reached up to perform the ultrasound again and I looked between my knees towards Mom and Lyn.

Poor Lyn!  She looked like she was going to pass out.  She was so uncomfortable.  I was draped but it wasn't 100% effective and Lyn was getting more of a show than she that for which she was prepared.  She didn't understand what the doctor was doing, was pinned in a corner and couldn't understand what the ultrasound was showing on screen.

I motioned to Mom with my eyes.  Mom is very attuned to Lyn and how she's doing.  Mom directed Lyn to look at the screen where the doctor was explaining how far into my pregnancy I was.  At the same time, Mom put a hand of each of my knees and shifted, effectively blocking my sister's view while still staying out of the doctor's reach.

Lyn was happy to get out of the exam room.  Later in the day, she began to understand that she was going to be an aunt.

She's a good aunt and even if she was uncomfortable, I am glad I was able to share that day with her.