Saturday, December 31, 2011

Resources for the Care Provider

One of the hardest things about caring for someone with dementia is meeting the needs of the care provider.  Care providers typically are friends and family members of the person with dementia.  They are untrained and are not professional care providers.

HBO has produced a number of films about Alzheimer's Disease.  One of the films in the series is called Caregivers and it gives some good and moving insight with just a few of the challenges faced by care providers.

As their loved one declines, they may have to stop working outside the home to provide care around the clock.  This will lead to social isolation which will increase their stress.  It could also lead to others who are not full-time care providers underestimating the amount of effort is involved in caring for the afflicted individual.

As we've started to see with Lyn, the care provider's private space is reduced as the individual, in this case my sister, seeks more and more reassurance that everything is OK.  Bathroom breaks may be interrupted, the care provider is shadowed and has a pair of eyes constantly looking over their shoulder and their sleep may be interrupted.  I remember as a new parent that I was told repeatedly that I would loose up to 750 hours of sleep in the first year of my child's life alone.  How much sleep is lost by the care provider as their loved one declines month after month?  The loss of sleep alone would start to take a toll on any care provider.

Care providers need strong social and support networks upon which to rely during the time they are tending to their loved one.  They may find their faith community plays an important role in providing this support.  However, they may find a more understanding support structure by reaching out to a local Alzheimer's or dementia support group.

Support groups are not the only resources available to the care provider.  There are numerous on-line resources available to them.  While books are tremendously informative, an on-line resource may provide a level of interaction, a give and take, from which the care provider can benefit.

On-line Resources for Care Providers:
National Family Caregivers Association provides resources and a free community for care providers to connect to each other.

Strength for Caring provides articles as well as message boards and care provider stories.  This site appears to be sponsored by Johnson and Johnson.

Family Caregiver Alliance provides email groups for care providers in addition to a plethora of articles.

Friday, December 30, 2011

Care Options

As the dementia patient's brain dies, their body is less able to respond to infections or other illnesses which may arise.  An upper respiratory infection is more likely able to move into pneumonia than it would have previously because the brain is unable to direct the body to efficiently fight the infections.  The care provider(s) and individuals who have a voice in the patient's care must make decisions about how to have the patient treated.

They will be asked to consider pain medication, hospitalization, feeding tubes, and eventually hospice care in addition to many other medical decisions.  In short, they will be asked to provide palliative care or to intervene more directly and aggressively in the immediate health concern the patient is facing such as a bout of pneumonia.

Some definitions may help us at this point.

Palliative care is defined as medical care focused on relieving and preventing patient suffering in all aspects of the patient's life using a multidisciplinary approach.  Palliative care does not seek to cure the patient; just ease their distress and improve the quality of life.  Unlike hospice care, palliative care may be given at any point of a serious illness regardless of the diagnosis.

Hospice care is palliative care provided for a terminally ill patient, usually in the last stages of the patient's life.

Intervention care, if I can be allowed to use those two words together, is the medical care administered to  tend to the immediate issue.  For example, the patient has pneumonia and treatment is administered to stop that particular infection.

The patient's care providers will be asked to decide to aggressively tackle that infection or to allow the disease at hand to progress while providing palliative care.  For many, this decision is a difficult one and it may go against what the patient themselves would choose were they still able to make the decisions independently.  However, if dementia is a terminal disease, we may be wise to ask what purpose is served by aggressively treating the infection at hand.  I'm not saying to let the patient suffer.  I'm merely questioning if the hospitalization is necessary or the best course of care which can be provided to the patient.

Questions to consider:

  1. What level of care would my loved one, the patient, want in this circumstance?  If possible, you should address this question with your loved one before their dementia progresses to the point where they are unable to communicate their preferences.  
  2. Given my loved one's preferences, would aggressive medical intervention or would palliative care be best?  Should there be a medical directive put into place?  One thing to keep in mind; if the medical directive says "do not resuscitate" or anything similar, then the care provider should not call emergency services as they are mandated to ignore that and provide intervention care to the emergency at hand.
  3. Does intervention care make sense given the current state of my loved one's decline?
  4. Am I seeking intervention care because of my own needs and desires instead of my loved ones?  We need to be honest with ourselves as we evaluate the medical decisions placed in front of us.  Are we seeking intervention because that's what our loved one wants or because we are not yet ready to say good bye if death is a possible outcome of the illness at hand?  We're human and making a choice which could lead to someone's death is not something that most of us would willingly do.  If we consider how hard it is to euthanize a loved pet, then it is understandable why we struggle with the care questions for our loved ones.  
If your loved one is still able to participate in the conversation and still able to state how they want to be treated, these questions become moot, of course.  If your loved one is currently in a nursing home, be sure to convey all of your care decision information to the care facility as it may help them to avoid unnecessary hospitalizations.

Is it too early in Lyn's dementia for me to be raising this topic?  I hope not.  Lyn is most likely in a middle stage for her dementia.  She's been forgetting recent events she's experienced.  She's lost complex skills and she's become increasingly moody and withdrawn.  Lyn can still participate in her care and can still state her preferences.  However, there will come a time when she is no longer able to do so.  Mom and I would be well served to be on the same page with regards to her care.  Planning now will facilitate Lyn's care and quality of life in the months to come.

Additional Information Sources:
Barriers to Excellent End-of-Life Care for Patients with Dementia
Dementia Patients Suffer Dubious Hospitalizations
Should Advanced Dementia be Considered a Terminal Illness
Redefining Dementia as a Terminal Illness

Thursday, December 29, 2011

A Terminal Disease

Dementia is a terminal disease and one of the leading causes of death in the United States.  We don't like to think of it that way; but it is terminal.  Dementia is the set of symptoms we witness and the patient experiences as the brain slowly dies.  Dementia is a long and irreversible brain death.

In the very early stages of dementia, the changes seem minor and may go easily overlooked.  The patient may have a little more difficulty driving, finding their keys and remembering appointments.  They may be more likely to get into interpersonal conflict.  The friends and family around them may make allowances for these changes and pick up extra work without realizing what is going on at the time.

As the brain changes and the patient moves deeper into dementia, the changes observed and experienced are more noticeable.  The patient begins forgetting events they have just experienced such as Lyn recently forgetting that she and Mom had just filled up the car with gas.  Complex tasks become more difficult and the patient becomes more moody and withdrawn.

Bit by bit, the damage being done to the patient's brain will cause more memory loss and less interaction with their environment.  The skills needed to tend to their own daily needs will be lost.  The patient will require assistance with personal hygiene and even eating as they may begin to struggle with swallowing. The ability to recognize those around them and their environments will also be lost.

For many, it is this last stage of dementia that is thought of when the topic is considered or discussed.  In fact, this stage is years into the disease.  The brain death that has been occurring has impacted every aspect of the patient's life irreparably.  At this point, it is only a matter of time before physical death occurs as well.

Given that dementia is terminal, the question becomes how to respond to the patient's failing body?

Additional Information Source:
Seven Stages of Alzheimer's

Wednesday, December 28, 2011

Slow Recovery

Lyn's recent illness took her longer to recover from than previous bouts.  Typically, she would have a sinus infection annually.  Once it was identified and she was placed on antibiotics, recovery was usually pretty quick.  She would be down for a couple of days, napping during the afternoons and not really going out much in the evenings.  When she was working, she might miss a day of work as a result of a sinus infection.

This last infection was sinus, ear and upper respiratory before it was over.  It hit her harder and lasted longer than an infection has since she was an infant.  Mom, as my sister's care provider, has to maintain a notebook on Lyn's activities each day.  This notebook has been maintained since Lyn was put into her current case management through New Mexico's disability waiver program.  It has allowed us to recognize that Lyn's infections have gotten worse and taken longer for her to recover from over the past few years.

On Christmas Eve, Mom could finally tell that Lyn was on the mend.  She had developed a case of attitude:

     About 11:30 in the morning, I heard her say something about lunch.
     I said "Ok, but let me finish this first."  Big mistake.  I should have asked her to please repeat
     what was said.  She then said she needed to get her shoes on.  What?

     I went to her room to ask her why she needed to put them on and was informed that  she wanted
     to "go" get lunch.  I realize how cruel I can be and here was proof.  I was saying no.  "We'll eat
     here" and proceeded with a couple of suggestions for lunch.

     "But I want to go get something."
     I asked if she had any dollars.
     "No, but I have all this."  She had poured lots of coins on her bed.  There must have been $30
     in change.  I still said no.  I told her I knew she hadn't been anywhere all week because of being
     sick but we weren't going out till tonight.  The Look was given!  I then offered 2 choices for lunch
     and she said she didn't know what she wanted.  About 10 min later she said she "guessed" she
     would take leftover spaghetti.  I was supposed to feel guilty but I didn't.

This is another aspect of the "new normal" for Mom and Lyn.  The growing damage in Lyn's brain makes it harder for her body to recover from any other illness at hand.

Additional Information Source:
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease, Related Dementias, and Memory Loss

Tuesday, December 27, 2011

Strawberry Baby

Lyn's hair has been through many different shades over the course of her life.  She's only recently started having highlights put in her hair.  All the colors she transitioned through, especially in the early years, was all natural.

If I remember correctly, she was born with dark hair that quickly fell out.  That was replaced with strawberry blonde which later went platinum.  She was blonde in our early childhood and more red in her late teens and early twenties.  She's not got dark, sandy blonde or light brown hair.  At the time the picture below was taken, she was in her strawberry phase.

Lyn was less than a year old when our parents returned from Italy with her for a visit.  Grandma started referring to Lyn as "my granddaughter with the pink hair."  Grandma really had no room to talk with her blue rinse.  Grandma had been playing peek-a-boo with Lyn and the jello mold got left on her head for the picture.

Hair color is determined by the amounts of the pigments eumelanin and pheomelanin present in the hair. Typically changes to hair color occur slowly, over the life of a person due to factors such as aging or as a result of a medical condition such as vitiligo.  Malnutrition and certain medicines can also change hair color.  Malnutrition will make the hair lighter and more brittle.  Antibiotics can also lighten hair color.  Given that Lyn was put on antibiotics when she was just four hours old, it could be that they played a role in her rapid, very early hair color changes.  Hard to know now after all these years.

Monday, December 26, 2011

An Interesting Perspective

Each day, I try to take a little time to catch up on the news, do a little reading and a little research.  Sometimes, those things are all the same activity for me.  I'm always on the lookout for something interesting which may pertain to this blog.

Recently, an article on the BBC jumped out at me.  It was a precis of a murder mystery told from the perspective of a woman with dementia.  The author, Alice LaPlante, incorporated observations from her own mother's struggle with dementia.  The book is Turn of Mind and was published this summer.

I'm going to have to read this book to see another person's narrative resulting from their observations.

Sunday, December 25, 2011

Merry Christmas

Thank you for joining us on this journey.

Six months ago, we were reeling from Lyn's dementia diagnosis.  We didn't know where it would take us or what we would learn along the way.  We still don't.  Dementia and the changes it brings is so individualized that no two patients will progress through their declines in the same manner or at the same pace.  Finding information on how dementia impacts those with impaired cognitive abilities is a challenge and so I keep finding myself at the realization that what Lyn experiences is somewhat unchartered waters.

When I proposed starting this blog to Mom, I did so with two purposes.  First and foremost, I needed a way to easily share information with Mom.  While this could have been achieved just through email, I wanted to have a more permanent record that we could both easily go back and refer to as needed.  So, a shared repository of the information made most sense.  Second, I wanted to gather the information and resources together for other families who may find themselves in the place where intellectual disability and dementia overlap.

It is a bit of a specialized spot.  However, it is my long-term hope that the information gathered here and the stories about Lyn become useful to other families who are faced with adding dementia into their lives.

As you read through the entries, I highly encourage you to join in the conversation.  Your comments are most welcome!  I may not always respond because I believe that some comments are able to stand on their own and because, like you, I have a full life away from the blog.  If you find a link of interest in your wandering around the web, please feel free to send it my way.  I maintain a list of resources for future blog posts and am always on the look out for more.

A friend of mine recently asked if she could share this blog with her daughter.  I had to laugh because the blog is out publicly and I welcome you pointing others our way.  It does not matter to me if you are in the communities who care for the intellectually disabled or those with dementia.  It does not matter if you are reading because you're a friend or family member keeping tabs on my sister.  All are welcome.

Thank you for reading and learning along with us.  May today and everyday bring you a smile and a moment of joy.

Christmas 1997 - Virginia

Merry Christmas, everyone.

Saturday, December 24, 2011

Santa's What?!

When Lyn was 14 years old, there was a program a local charity had established to have Santa call and speak to your child.  The maximum age limit for the call was 8 years old.

When Mom learned about the program, she signed Lyn up even though Lyn was clearly well above the program's limit.  On the registration form, Mom noted Lyn's real age and why it was still OK for Lyn to participate.  Mom noted Lyn's disability and that she still deeply believed in Santa.  Mom felt it was worth a shot and we didn't think much more about it.

A few weeks before Christmas, the phone rang and the caller identified themselves to Mom as part of the program.  They had seen the note and agreed that Lyn should speak to Santa.  A time was arranged for the call to happen when we were to be home.  At the designated time, a call came for Lyn.  Lyn took the call and her face lit up when she realized it was Santa on the phone calling to speak just to her.

Let me step back from this story for a minute to tell you a little about Lyn.  You already know she love the jolly old elf and counts him as a personal friend.  What you may not know about Lyn is that speech came late to her and it has been a challenge for her.  When she's tired or excited, when her brain's not firing right, her words get jumbled.  When we were little, I often served as her translator because I understand her speech patterns better than anyone except maybe Mom.  There was a time when even Mom would ask me to translate.  The other thing to know about Lyn is that she's not a mean or malicious person by any stretch of the imagination.  Don't get me wrong, she can be a pill.  However, she's inherently a good person.  So, that being said... back to our story.

Lyn was ecstatic that Santa was calling just to speak to her.  He didn't want to speak to her siblings.  He needed to check in with her.  She was shaking in her excitement.  We all knew what was going on and had gathered around to watch her call with Santa.  Here's how it went down from my perspective.

"Santa?  Santa!  How are you?"
"Santa, how is Mrs. Claus?"
"How are the raindeer?"
"How are your slaves?"

Yes.  She asked Santa how he slaves were doing.  I saw Mom's color drain from her cheeks and I knew that Lyn had mixed up sleigh and elves.  I literally fell over, good thing I was sitting on the floor, and laughed with tears streaming down my face.  The more I tried to not laugh, the more it was wracking my body to escape.

Lyn got mad at me.  She was trying to have a serious conversation and I was ruining it for her.  She would ask Santa a question or respond to something he said.  She was polite and happy in her responses to him.  To me, she was giving The Look and pointing her finger at me and then down the hall.  She wanted me GONE!

I have no idea what all they ended up discussing.  I was banished from the room until I could get myself back under control.  That was well after the call ended.  She was happy as a lark and I knew I had just encountered one of those stories that illustrate your life.

Friday, December 23, 2011

Santa's Visit

I used to work for a college and had a boss with a very good heart.  Kevin was a big man who was deeply involved in the communities of the college and his church.  It was December of 2000 and Lyn and Mom were coming to Virginia to celebrate Christmas with us.

When chatting with Kevin one afternoon before they arrived, he suggested we have Santa visit Lyn at my house.  I thought it was a great idea and wondered how to make those arrangements.  Turns out, Kevin had his own Santa suit and played Santa for his church each year.  He offered to come to my place for a special visit.  I brought in a couple of small gifts that he could bring to her and the child of our best friends.

Mom and Lyn arrived from New Mexico.  Mom was aware of these arrangements and gladly played along.  We told Lyn we couldn't go out one afternoon because our friends were coming over to visit them.  Our friends arrived and the visit was well underway when a knock sounded on the front door.

I answered and there on my step was a 6'2" Santa asking for Lyn and the little one.  I'll let the pictures tell the rest of the story.

Kevin was a great Santa!  The little one was a bit unsure of the situation but was happy to receive a present just the same.  Lyn devoured the attention and the special visit from Santa.  I'm glad Kevin made the suggestion.  He helped make a special memory for my family.

Thursday, December 22, 2011

First Smile

From Mom:

When Lyn was 2 and a half months old, she began vomiting, projectile vomiting, each time I fed her.  Because she was so small, she was eating every 2-3 hrs.  I knew she would become dehydrated quickly.  She was 7 weeks premature and it wouldn't take much for that to happen.  Off we went to sick call.

The doctor checked her out and when he listened to her stomach he said she had gastritis.  He had the corpsman give her an injection and said it "might make her sleepy for a couple of hours."  She was knocked out for 48 hrs!

I was to give her jello water at each feeding  There was nothing like Pediolite in 1971 in Northern Italy.  Every 3 hours, I would try to wake her.  I had to rub and tap the bottom of her feet.  She struggled to open her eyes and drink.  She might have gotten 2 ounes down each time.

After the second day, the medicine wore off and she would wake normally.  That evening, she was wide awake and hungry.  First, I gave her some jello water to see what happened.  She gulped it down but of course wasn't satisfied after a few minutes.  I washed her bottles while your father was holding and talking to her.  I poured whole milk in one and set it to warm.  I had the camera in hand and snapped this picture just as she smiled.

This was her first real smile that wasn't from gas.  She was looking straight at your father and smiled again.   Not only was this her first smile but the first wrong diagnosis to deal with.  She didn't have gastritis.  The formula was too rich for her and she couldn't tolerate it.  Whole milk was not too rich.

She drank the milk and kept it down with no vomiting.   She began to put on weight.  Usually a baby gains weight with formula.  Not her.  She gained weight with the cow's  milk.  Two weeks later, at her 3 month check up, the doctor saw she was up to 7lbs.  He asked about the vomiting and made a comment about her responding to the shot.  I kept quiet and knew I was doing the right thing for my child.  It wasn't long till I began to question and speak up.

Wednesday, December 21, 2011

Time and Space

Years ago, I was on the phone with Lyn at this time of year when I realized that she doesn't really grasp time and space very well.  She and Mom had ben out and about one evening when she spotted a Christmas tree on top of a building.  She was amazed.  How did they get it up there?  It was just so beautiful!  Did you see it?

Did I see it?  How do you explain that there was too many miles between us for me to see it when I was out and about?  I told her I was too far away and had not seen it.

Lyn directed me to "just go down Menaul and it is on the right."

Now, Menaul is a long street in Albuquerque and I was about 2,000 miles away.  Neither of those factors mattered to Lyn or to the directions she gave me.  To her, they were very clear and it was my failing at not having spotted the tree up on the building before our conversation.

There are times when you realize that explanations about distance, time or the curvature of the Earth become irrelevant to the conversation at hand.  Lyn would soundly reject all of those reasons as to why I didn't go looking for the tree.  So, I assured her that the next time I was on Menaul, I'd look for it.

This type of conversation has happened since.  There was the time when she was telling me about a car accident that happened on the street in front of their neighborhood.  In the excitement of her telling me about it, she asked "Did you hear the crash?  It was so loud!"  She heard it so, clearly, I should have as well.  I responded that I had not heard the crash but I was inside and had the windows closed.  She accepted that reason.  Had I even attempted the "too far" reason, it would have failed.

Lyn knows I live across the country from her.  She's travelled to my home annually for about 20 years now.  She had come by train, plane and car.  When I travel to their home, she keeps track of where I am in the route.  For example, she knows that I'm on my first plane and will call during my layover.  She knows that it takes a long time to each other.  Even so, when she wants to share something and it is new and immediate to her, then factors such as time and space are not important to what she's trying to tell me.

I love those conversations.

Tuesday, December 20, 2011

Tales of Christmas Past

Lyn has not always enjoyed Christmas.  Sometimes, it was overwhelming.

In 1972, my family had moved from Italy back to the States because our father was to be stationed at Red Stone Arsenal in Huntsville, Alabama.  Since they were relatively so close to home, they returned to New Mexico for Christmas.

Lyn found the whole event to be too much.  There were too many people and it was too loud for her tastes.  Worst of all, there were too many people with names starting with J.  If I've done my math correctly, there were 9 relatives who had a J name at that time including the boy in the background.  His entire family; Mother, Father and younger Sister all had J names as well.  My poor Grandmother would start stammering out J's when she wanted to get someone's attention.  Unable to get to the right name, she'd give up and just issue a "You!" to select the person she wanted.  I can't  imagine how much confusion it was for Lyn that year.

I'm not sure what she's focused on in this picture.  I like to imagine that she's casting a wary eye at the Christmas tree itself.

Monday, December 19, 2011

Feeling Crappy

Lyn woke up "feeling crappy" yesterday.  She was in tears.  She showered, "felt human" but was soon in tears again.  It was Sunday and Lyn's physician's office was closed.  So, off to urgent care they went.  The doctor was attentive and listened to Lyn when she described how she was feeling, quoted above.  From check in to being seen by the physician was only about 10 minutes.  Lyn has an ear infection and a sinus infection.  Her throat is also a wreck but she tested negative for Strep.

The illness scuttled the plans Mom and Lyn had to attend an afternoon performance of The Nutcracker which Lyn loves.  Lyn didn't want to expose anyone and ended up in bed for the afternoon.  She was chilled and needed a pair of sweats, her electric blanket and 2 fleece blankets to settle in.  The tickets were a loss but she would have been miserable the entire time.

It is not often that Lyn comes down with an illness.  When she does, it really knocks her for a loop.  As long as she's willing to cooperate with taking her medicine, she'll bounce back in a few days.  We anticipate this will become more difficult as her dementia progresses.

Sunday, December 18, 2011

She's Been Adopted

Meet Nikka!  Nikka has adopted Lyn. 

Mom and Lyn heard about a large pet adoption event on the news.  Lyn told Mom "If you get a dog, you know I'll play with it."  So, off they went.

They looked at a couple of dogs and then spotted this girl.  She's about two years old and was a surrendered pet.  She's been in the city's care since August but was with a foster family because she was not coping well with being in the shelter.  She is gentle and gets along with other dogs and children.  When they had learned all this about her and more, Mom turned to Lyn and asked "What do you think?"  Lyn was grinning from ear to ear.  

A volunteer took Nikka and Lyn for a walk while Mom filed out the papers and paid the adoption fee.  They then went to the store to purchase the supplies they'd need right away.  Nikka decided she needed to walk between them.

On the way home, Lyn burst into tears.  When Mom inquired about the cause of the tears, she choked out that she missed Griz.  Mom assured her that Griz would be happy that Nikka was joining the family. It took about 10 minutes for Lyn to cry it out.

Once they got her home, she and Lyn went out and ran around the yard.  Inside, if Lyn went to another room, Nikka would follow.  If Mom went to another room, Nikka wouldn't move.  When Lyn went to the restroom, Nikka waited for her by the door.  When she left with her respite provider for her evening activity, Nikka sat by the door and cried for her for about a half hour.  She's decided that Lyn's her person.  

So much for Mom getting herself a new dog.  It looks like she's gotten Nikka a Lyn.  

Saturday, December 17, 2011

Nice or Naughty Machine

My manager at work pointed out a website where you can make a customized video message from Santa.  I used it to create a message for Lyn yesterday.  You can view it here:

Lyn's Message from Santa

When Santa says "Come a little closer," Lyn was nearly nose to nose with him.  When he said that he had "a message from your sister," she nearly sprained her neck whipping around to look at Mom.  Mom ended up having to tap her on the head because she realized Lyn wasn't breathing.  She was holding her breath in her excitement.

Mom says she was intensely interested and was amazed that he sent her a message.

Friday, December 16, 2011

Christmas Wish List

From Mom:

I forgot to tell you this: during our team meeting this week, Lyn was showing the email she got from Santa.  What she sent was a form letter where she told him she wanted a sweater, pen set & surprise.  His reply repeated this.  One of her team members asked what kind of surprise she wanted.  Not blinking an eye she said "a young man".  I nearly fell on the floor laughing and of course she didn't think that was funny.  She said "No, really."  They were sputtering.  

I have to come up with the surprise and it sure won't be a young man.

Thursday, December 15, 2011

She Believes

Lyn believes in Santa.  She has maintained this belief despite people making comments that would call this belief into question to anyone else.  She believes in Santa with the same certainty that you and I know that the sun will rise tomorrow.  It is fact, pure and simple.

In years past, she's sent him cards and letters.  Apparently, Santa's upgraded his technological capabilities.  He has a website which Mom and Lyn checked out over the weekend.  From the website, you can send an email to the old elf.  So, that's exactly what Lyn did with Mom's help.  Lyn populated a form letter where she filled in her gender, three things she wants and her age.  She hit send and was lingering on his site when a chat window popped up.  Santa came into view and chatted with her.  During their chat, an email replay arrived which was in perfect syn with what she had submitted.  In both the chat and the email stated how happy he is that "older" kids still contact him.  She was enthralled to say the least.  She kept inching closer to the computer.

Mom and Lyn printed his letter so show her team during the next team meeting.  She also showed it off to all the guests at the open house.  She was still excited about it when she went to bed.  I know that these touches which make it so real to some are geared towards little ones.  However, it works with her too.  She Believes (yes, with a capital B) and these touches are just the proof for her.  It doesn't hurt that we've looked for ways to reinforce this over the years.

Wednesday, December 14, 2011

Spacing Paid Off

Mom and Lyn's open house was a great success!  Seven of the invited ten guests were able to make it.  They were spaced over the course of the afternoon which allowed Lyn to focus on one or two people at a time, to feel included and to participate readily.  She was not overwhelmed by the noise of many people talking or the motion of lots of kids running around.

The first two guests arrived at 2:30 in the afternoon and stayed for just a half our.  Lyn entered into the conversation nicely.  She pointed out how she helped put things together for the open house.  There were six kinds of cookies, two kinds of candy, banana bread, pumpkin/apple bread and chococlate pound cake.  There was posole, queso and chips as well.  Lyn was initially worried about the amount of food she and Mom had prepared.  She was relieved that there was enough for their guests to eat. One thing she worried about all afternoon was the queso.  She kept stirring it so it wouldn't stick since it was in the little crockpot.  As soon as she thought the chip bowl was low she filled it.

As the first guests were leaving, our uncle and his family arrived.  They stayed over two hours and ate and ate and ate.  A few min after they came, the last guest arrived.  We all had the posole which really was the best Mom says she's ever made.  Lyn didn't eat it.  She never eats the posole.

She was about to pop since her gift to our uncle under the tree.  She had made a card for him and one for our aunt.  I let her give them their cards and tell our uncle to open his gift.  Lyn wanted to see if it was ok.  Lyn gave him a hoof pick to use on his horses and he loved it.  She made sure our aunt knows that the goodies that she gets will be delivered next week.  Lyn and our two teenage cousins went into the living room and talked about the tree and looked at all the ornaments.

When the guests left, Lyn helped Mom clean up.  She had a great afternoon and Mom's planning helped pave the way for a successful, melt-down free afternoon.

Tuesday, December 13, 2011

Fixated on Something

Here are two examples of Lyn fixating on something:

Earlier this week, Mom gathered the towels for the laundry.  While they were washing, Lyn decided to get ready to take a bath.  She asked if Mom could do the towels since there wasn't one in her bathroom.  Mom directed her to get another one from the linen closet because the ones in the wash were not yet ready.  A few minutes later, she asked again if Mom could do the towels.  Instead of asking Lyn to get a towel, Mom went and got another one out of the closet.  Lyn seemed puzzled.  Mom said there are plenty of towels and the one in the dryer could wait.  "Yes but it's my favorite."  Mom asked her to use the one now in her bathroom until the ones in the wash were finished.  She wasn't happy but was too tired to argue.

I wonder if getting a couple of identical towels would solve this.  One could be in the wash while the other hangs in the bathroom, ready for her.

As for the second example, it came about in a phone call between us over the weekend.  When I was out  there last month, Lyn and Mom had asked for a Christmas gift idea for my eldest child.  We discussed several options and settled on one.  They placed the order for the item and all is set.  When I called this weekend for a quick conversation before finally tackling the Christmas decorations at my home, Lyn insisted she had to talk with me.  She asked what she could get my eldest for Christmas.  I reminded her that we had agreed upon a particular item and that it had been ordered already.  She wasn't sure.  I told her her again what the item is and that there was nothing needing to be done.  When she decided our part of the call was over, she passed me back to Mom.  Mom explained that Lyn decided about 3 days prior to my call that no gift had been secured for my eldest.  There's been nothing Mom could do to convince her and that's why she insisted on having the conversation with me.  I'm not sure I succeeded.  We'll see if this current fixation settles down soon.

In the meantime, we'll keep her on her schedule, including two bowling sessions each week.  Saturday's resulted in a score set of 128, 80 and 103 along with a $0.27 win at the casino.

Monday, December 12, 2011

Cautiously Entertaining

Three years ago, Mom and Lyn hosted a Christmas open house.  It was well before Lyn's dementia diagnosis and before anyone had any idea that the changes in her behavior were a result in the changes happening in her brain.  Mom explains:

"During the last one, she went to her room and came storming back all but yelling.  I had put a small santa ornament on her door, like I've done for years.  She exploded, in front of several mental health therapists and wouldn't calm down.  You could have heard a pin drop outside her ranting about that being on her door.  At the time I had no idea what the problem was, now I know." 

Dementia changes a person's ability to perceive, think and understand what is going on around them.  For Lyn, this causes challenges when she no longer perceives that she's the center of attention.  It also happens if she thinks her role in the event, such as hostess, is questioned or in any way called into doubt.  Her desire to prove her worth is very high and she is defensive about her contributions.  

When your caring for someone with dementia, managing their environment is one of the primary approaches to managing behaviors such as the agitation described above.  In the last open house, for example, Mom had invited about 30 guests.  The guests were all in the house at roughly the same time.  It was a large, chatty gathering which may have been too much stimulation for Lyn.  

Mom and Lyn decided to host an open house again this year.  Lyn's diagnosis means that Mom knows what's going on and what she can anticipate.  To mitigate, Mom has only invited about 10 guests and asked that their arrival times are spread out over the course of the afternoon.  Mom is cautiously looking forward to the open house.  She wants to have the social event but is afraid that Lyn will melt down like she did the last time.  

Additional Information Sources:
Living with Dementia by Patrick Barkham for The Guardian

Sunday, December 11, 2011

The Importance of The Same

It is important to Lyn that things stay the same.  It means reliability.  It is understandable and it is something she can anticipate.  She knows her brain is changing so keeping things the same as she always has them is even more important than it was even a year ago.  You and I really have no real way to understand the importance of the same or to feel it the way she does.  However, we will have glimpses of it.

On Thursday, Lyn had her normally scheduled bowling practice.  Normally, she bowls on lanes 5-6.  For some reason, she and her partner were moved over to lanes 7-8.  She was irritated and started to gripe.  Even after she got home, she was still unhappy with this minor change and was voicing her displeasure.  Mom asked if she had fun bowling and Lyn affirmed that she had.  Mom then pointed out that her scores were good and that the lane she used was unimportant.

Saturday, December 10, 2011

When you gotta go...

From Mom:

The newest blog reminded me of just how she has always been able to just go talk to someone.

During the opening State Special Olympic ceremonies in about 1982 she was one of the ones chosen to carry a banner.  Now this banner stretched across the 4 lanes on the field track and the ends were attached to wooden pieces about 5 ft tall.  She was to hold it up high as they marched around the track then into the middle of the field.  I don't remember who carried the other end, but that didn't matter.

There were several coaches and officials marching ahead so the kids knew where to go.  She did very well marching around and into center field.  When they got to center field they were to stand until all the athletes filed in behind.

I was watching her be in her element when all of a sudden she turned to the man on her right and said "hold this" and handed him the end of the banner.  Off she went.  It took a coach a few minutes to realize Lyn was headed off the field.  The man holding the banner looked shocked and wasn't sure just what to do.  The coach headed after her as did I.  She said "I have to go potty" so the coach went with her and I went back to my seat.  The banner holding man stood there as he was told watching the rest of the kids gathering behind him.  The ceremonies began and the mayor was to give an opening speech.  I realized we had a problem.  The mayor was holding the banner.  He got a coach over to relieve him and made his way to the podium.

It was the late Mayor Harry Kinney, the one who looked like Benjamin Franklin.  He was the 1st mayor Albuquerque had had in almost 100 yrs.  He laughed, took it in stride and said it was everyone's duty to help the athletes in every way possible even if it meant a slight change in plans.  She proudly marched back on the field to re-take the banner and was not happy it was in someone else's hands.

When the ceremonies were over the Mayor was still milling around talking to the kids.  I went over to him and apologized for Lyn's actions.  He laughed and said it was "the greatest thing" that had happened to him in a long time.  He said it was nice to be treated as a regular person and not the mayor.  We saw him again about a year later and he remembered the incident and we laughed about it.

When you gotta go you gotta go.

Friday, December 9, 2011

She's Not Shy

In case I haven't made it clear in previous posts, Lyn's not shy.  She's such a social butterfly that she's totally comfortable walking up to a complete stranger to say something to them.  It is usually something nice.  Actually, I cannot think of a time when she's said something rude to someone she doesn't know.

Years ago, Lyn and Mom came out to my place for Christmas.  We took a day to walk around Colonial Williamsburg and enjoy the holiday decorations.  It is beautiful during the regular days and quite striking during the holidays.  They decorate using lots of natural items such as with garlands made of boxwood and magnolia with fruit for accents.  The actors create quite an ambiance that we enjoyed as we strolled from block to block through the day.

At one point, we were enjoying the antics of a rather fat squirrel who was clutching the tree trunk right at head height just chattering away at people.  He was rather bold and unafraid of us.  Lyn thought he was very funny until she spotted a flash of red.  That was it!  She was across the street in a shot.  She had spotted Santa.

He was there to wish visitors well.  She excitedly told him about visiting us and wanted to make sure he knew how to find her on Christmas Eve.  He assured her he knew right where to go.  He wanted to make sure she was behaving herself and she promised she was.  They posed for pictures, of course.  She even got a hug before she'd let me tend to the little girl who had toddled up behind them.

Lyn was on top of the world.  It had been a good day to start with and seeing Santa had made it that much better.  To her mind, it was like he had been there just for her.

Thursday, December 8, 2011

Tucked In

Lyn came into the living room and said she wanted her turtleneck tucked in.  She had a sweat shirt over it as usual.  Mom said "Ok, tuck it in."  Mom went on with the vacuum and didn't watch.  She's tucked her shirt in for decades.  A short time later, Lyn stood up and said "I want this tucked in."  She lifted the sweat shirt.  Mom responded "Well, tuck it in."  Lyn informed Mom that she didn't know how.  So, Mom reached over and began tucking in the back.  Mom was almost done when Lyn pushed in the bit right in front.  In the past, if Mom tried to tuck the shirt in, Lyn would pull away and inform her in no uncertin terms that she could do it and would.  

It is things like this that make Mom sad.

Wednesday, December 7, 2011

Fighting the Cold

Lyn is nearly always cold.  Grandma was the same way.  They could both give lessons in proper layering.

New Mexico has been in the grips of a winter storm.  Parts of the state have already received over a foot of snow.  Mom's had over two inches in her yard.  For those of you used to the snow, it is OK to laugh at that amount.  However, in Albuquerque, two inches is enough to delay school for two hours.  Much more and the city shuts down.  Mom and Lyn live out on the mesa West of town.  They're in an area that doesn't even have naturally occurring trees.  It may not officially be desert, but it is pretty darn close.

Their nighttime temperatures have been dropping into the single digits.  Mom's leaving the faucets dripping to keep them from freezing.  Lyn's fighting the cold in her own way too.  She has an electric blanket, fiber filled comforter and 3 fleece blankets.  With the sweats and socks she's wearing Mom felt certain she would be warm.

Lyn wasn't sure.

Tuesday, December 6, 2011

Making Cookies

Mom does a tremendous amount of baking for the holidays.  In years past, she would give baskets packed with all sorts of bread and cookies to friends and family as Christmas gifts.  Whenever a helping hand was offered, Mom could find some task to assign.

Last week, Mom was making a batch of snickerdoodles when Lyn asked if she could help.  When Mom rolled a cookie, she passed it to Lyn.  Lyn dredged it in the cinnamon and sugar before putting it on the cookie sheet.  Mom showed Lyn how to put them in a row.

Lyn did well with the first pan.  With the second cookie sheet, she had to mentally strain to get the rows started.  Cookie sheet three was way out in left field.  She put the first cookie at one corner.  The second cookie was placed in another corner.  The third cookie went into a third corner.  Mom tried to redirect Lyn into putting the cookies into a row.  Lyn no longer understood what she meant.  Mom showed her how to do it but it didn't compute.  There were only 20 to go on the sheet but 19 of those were either put in corners or all but on top of another one.  When she was finished, Mom rearranged the cookies and put them into the oven.  Lyn was happy that she helped and Mom thanked her while cleaning up the kitchen.

Monday, December 5, 2011

Setting Up The Tree

There was no bowling on Thursday due to weather.  Lyn participated in the decision to not go out but ended up not being happy with the change in schedule.

Mom had turned on the noon news which was talking about how dangerous the winds were.  The news casters were comparing the speed of the Albuquerque winds to hurricane forces when the gusts were in excess of 80 mph.  She made some comment about the danger and Mom jumped on it.  She suggested they play it safe and stay home since there was so much dirt blowing, power was out in places and trees were coming down.  Lyn thought this was a good idea so no one got hurt.

Within 45 minutes, Lyn's face was long and she was very withdrawn.  Mom asked what was wrong and she just shook her head.  Mom tried to talk with her about the wind and that they made the best decision.  She said "I know."  Mom suggested that they think of something fun to do so she wouldn't be unhappy.  Mom got The Look.  Several ideas were met with "No, thanks."  In desperation, Mom threw out "I know it's early but we could put the tree up."  She liked that idea so they moved some furniture and brought the boxes of decorations in from the garage.  Mom uses an artificial tree and needed to organize the tree parts.  Lyn started grabbing branches.  When Mom asked her to wait so she could get all sizes together, Lyn decided she was no longer interested in helping.  Mom tried to get Lyn involved again and asked if she wanted to put them on the center pole.  She did but after a few minutes lost interest again.  Mom considered putting it all back in the garage but the project was too far underway.

After the tree was complete, Lyn sat alternating watching Mom and looking outside at the storm.  Mom suggested putting the lights and decorations on the tree.  Lyn put four ornaments on the tree and then announced she didn't like getting glitter on her hands.  The majority of the ornaments have glitter on them and Lyn was done, completely done this time.  She sat down in the rocker and just watched with a blank expression.  Mom's attempts to talk, even about their trip got no response from Lyn.

It was a tough day.  Fortunately, the winds died down the next day and Lyn was back on schedule.  Saturday, her respite provider took her bowling and she was thrilled.  She bowled three games and had one pretty good one.

Sunday, December 4, 2011

Day Hab

Lyn and Mom have been talking about finding Lyn a day hab program.

Day habilitation is a program to help the individual learn and retain behaviors and skills that allow easier participation in regular community activities such as shopping, taking a walk or attending a social event.  Day habilitation is also known as day activity programs.  They typically offer recreational activities in addition to daily living skills.  Some programs offer a track for clients who are memory impaired or have been diagnosed with Alzheimer's.

In Lyn's situation, it is the skill retention that is so important.  Realistically, we don't anticipate that she will learn new skills as a result of the program.  We hope to slow the loss of her existing skills by reinforcing their use.

Additional Information Sources:
Dementia, Aging, and Intellectual Disabilities by Matthew Janicki and Arthur Dalton: Adult Day Services chapter
Habilitation Therapy: the Answer to Caregivers' Frustrations by Brenda Dapkus

Saturday, December 3, 2011

Christmas On The Pecos

Here is Mom's account of their trip to Carlsbad Caverns this week to enjoy the Christmas on the Pecos light show:

We headed out mid-morning, Nov 29th. I didn’t want to deal with morning traffic. She was happy and somewhat excited. I will admit, I have a lead-foot so I use cruise control on the highway. Good thing because the police were running radar in Tijeras Canyon. No problem. I would keep it about 5 mph over the posted limit, well maybe 9mph. As we came back thru Vaughn, I slowed down like I do when it says “reduced speed ahead.” Good thing I follow the speed signs in the towns because their entire police force was out running radar. One man for south bound traffic and the other for north bound traffic. Yes, a 2-man force. I did fine and when we got home Lyn said she was surprised we never got stopped. Ha, not me. Anyway, I said I still wanted to see the hawks and antelope. She laughed at me.

All we saw were LOTS of sheep, cattle and goats. There were a few hawks but nothing like last year. The ride down was a bit depressing since the sky was overcast. We did have sun half way down but as we approached the almost-ghost towns of Encino and Vaughn the clouds were still overhead. BTW, if someone is looking to buy I saw a home in Encino that was an adobe, 3 bdrm 1 bath. The yard was a good size. List price $18,500. Of course there is almost no one living in Encino. Right outside Roswell you can buy 145+ acres for $25,000. What a deal, both places.

OK, so now we’re in Carlsbad and I even know where I’m going. The highway construction from last year is still going on, just on the opposite side of the street. Thought I was back in Albuquerque. We checked into Best Western and relaxed for a while. We were to be at the riverfront by 5pm. So we were there at 4:30. I wanted a chance to look thru the gift shops. I bought myself a birthday present since it was my birthday. I got a lovely, handmade bowl.

We got on the Bella Sera at 5:15 for the first trip down the Pecos. This is the 20th anniversary of this event. The homes were so pretty, so diverse. We saw everything from The Holy Family to Santa to Clifford, the big red dog. Music was coming from of the yards with such beautiful lights. Fortunately, we were able to sit in the front, just like last year. She was happy and relaxed.

We went back to the room and she was able to watch Wheel of Fortune. She began to get nervous because it was now dark and we weren’t home. I did some fast talking about how much fun we had, how pretty the lights were and we were going home in the morning.

Wed, we had breakfast and went back to the riverfront. They had a banner along the chain link fence I wanted to copy. I’m sure you are familiar with the song “The Twelve Days of Christmas.” Well, this one is the NM version- such as “On the 1st day of Christmas, my true love gave to me a quail in a polvadera tree.”

On the way out of town we turned into the Living Desert Park and Zoo. Now, both of us love to visit a zoo wherever we visit another city. This one is built on the north end of Carlsbad and only took about 1.5 hours to go thru. This part of the state is the north edge of the Chihuahua Desert and all the animals are native to the region. We saw cougar, bobcat, lobos (wolves), elk, deer, antelope, rattlesnakes, owls, eagles, ravens and mountain blue jays. They have a bear, Millie, but she wasn’t out. We smelled her!!!! Her talent is painting. They sell the pieces and they were so cute.

Time to head home. We pulled onto 285 and she wanted to put in a CD. She wanted Christmas music. It is too early for that, I think, but oh well. After cruising thru Artesia and stopping in Roswell for gas and a quick sandwich we’re back on track. She put her seat down to take a nap. We did see several herds of antelope. About 50 in all and it was nice to see how fat they are. I’m sure I saw 3 that had my name on them. What I find interesting is that different things look going north on the same street we went south on 24 hours earlier.

I’m glad we did this again. I urge you, if you live in NM, to throw a toothbrush and clean underware into a overnight bag and go down to Carlsbad. It’s beautiful. If you live in England, when you visit a trip to Carlsbad is still on the books for the Caverns.

Friday, December 2, 2011

A Year of Seizures

When Lyn was a freshman in high school, Mom got a call from the school nurse one day.  Lyn had just had a seizure.  Lyn had never had seizures before and it came out of nowhere for us.  Lyn was quickly in with her pediatrician who sent them to the neurologist.  There was not just one seizure. They were happening a couple of times a day.

The neurologist performed all the tests available at the time and made a couple of interesting conclusions over the course of his year working with her.  First, he said that the majority of her brain damage was centered in the left frontal and temporal lobes of her brain.  Second, he couldn't determine a cause for the seizures and was reluctant to label it epilepsy.  He concluded that Lyn was faking the seizures and doing it for attention.

Let's pause a moment and let that sink in.  A neurologist stated that a patient, an intellectually disabled patient, was faking seizures and fooling everyone.  She was that good an actress.

When Lyn had a seizure, she would freeze and all major activity would stop.  The light would go from her eyes though it seemed like she was staring at something.  She was having petit mal seizures.  However, she would frequently be exhausted and physically weak afterwards.  Her first documented seizure was observed by her special education teacher during their lunch period at school.

Regardless of his personal opinions of her acting abilities, he did struggle to treat her.  He put Lyn on Tegretol in an attempt to get the seizures under control.  The medicine did not sit well with Lyn.  She lost a dramatic amount of weight, seemed lethargic and uncoordinated.  When she sat in a chair, she slumped to one side like an infant who is just learning to sit independently.

You can see from this picture just how thin and out of it she was while she was on Tegretol.  As soon as the full effects on her became evident, they weaned her off of it.

The neurologist never figured out why she had the seizures.  The seizures stopped just as suddenly as they started.  To the best of our knowledge, Lyn's not had a single seizure for since that year.  She has also not been medicated to prevent them since then either.

Before the seizures, Lyn met the standards to be considered educable.  After that year, she was no longer considered educable.  She was trainable, instead.  The difference in these two terms is the degree of self sufficiency that the individual can achieve.  It was at this point that her education switched to focus more on necessary life skills such as catching the bus, washing her laundry and recognizing critical words like "stop" and "police."

Thursday, December 1, 2011


When Lyn was little, about five years old, my family visited my Grandparents as Christmas approached.  Grandma loved candles and kept a red ball candle in her room during that time of year.

Lyn was intent upon the candle.  It was lit and she studied it for a very long time.  Mom and Grandma were keeping a close eye on her as they chatted and noticed when she started trying to blow it out.  She worked and worked at it.  She tried shaping her mouth in the O needed to produce the puff of air that would blow it out.  She struggled for several minutes as they looked on, letting her find her way and not wanting to sabotage her efforts.

"BLOW!" She croaked.

They were stunned!  She only had a couple of words at that point.  She could reliably say "Mama", "No", or "Shhhh" when she wanted water.  No one moved for a couple of moments because they weren't sure they heard her correctly.  She struggled again and out "Blow!" came once more.

They jumped up and told her to blow it out.  She blew it out and the matches were grabbed.  The candle was relit.  Lyn again said "Blow!" and it was with a little more confidence.  They told her to blow it out and she beamed!  They continued to relight the candle, each time getting a "Blow!" and a puff from my sister.

Soon, the smoke filled the room and was noticed by my Grandfather.  He came in wanting to know what was happening and if everything was alright.  Grandma told him to just watch as they lit the candle again.  Grandpa was floored when he saw what was happening.

He hurried into the kitchen for the big box of matches and took over.  He lit and she blew.  He said "As long as she'll say it, we'll do it!"

The game continued for another ten minutes and filled the house with smoke.

Wednesday, November 30, 2011

What Could be Better?

On Saturday, Lyn went out with her respite provider after a few days without seeing her.  Lyn was happy to go because she knew they'd be hitting the casino after a couple games at the bowling alley.  Scores are included below.

Bowling followed by the slots at the casino followed by dinner out.  What could be a better day for Lyn?    It would be a day in which she wins at the casino.

Her haul?  27 cents!
Her reaction?  Excitement!

Tuesday, November 29, 2011

Well Wishes

Happy Birthday, Mom!

I have, once again, failed to get a card in the mail.  Seriously, how you put up with me, I'll never know.  However, I've called in the forces and given Lyn the task of making you a card.  She's also promised to be extra sweet to you today.

Lyn was nearly giddy that I called to speak to only her last night.  I reminded her that it is your birthday and a card from her would be a perfect gift.  She said she could do that.  I could hear her smiling into the phone.

Your email later in the evening, about 20 minutes later, made me laugh.  To share with our friends, here's Mom's side of the story:

Your sister is so funny.  She was all but dancing when she hung the phone up.  Said "it was for me.  She wanted to talk to me about tomorrow."  
"Oh, our trip?"  
"NO."  A few minutes later, Lyn announced she was going in her room to watch Wheel of Fortune.  She closed the door.  She just came out and wanted to know if I would write something down if she gave me some paper.  
"Of course, I'll always help if I can."  
She went to get some paper and said "I don't know how to spell Happy Birthday."  
I almost chuckled.  I said "Hand me the card I got today from your cousin because it is in there."  I showed her the words and off she went to her room assuring me she'll bring it right back.Hmmmmm, such a mystery.  Of course I'll go along with it all. 

Monday, November 28, 2011


One morning while visiting Mom and Lyn, I turned to Mom and said "I need to go jump in the shower.  Is that OK?"  Mom started to say "Sure" when Lyn commented quite loudly and with emphasis "We do NOT jump in the shower.  What I'm trying to say is that you'll fall and get hurt."

Both Mom and I had to keep from laughing.

Sunday, November 27, 2011

She's Good with Kids

Lyn has always been good with kids.

She's happy to play with them on their terms.  She will sit on the floor and play with blocks, cars, dolls or Mr. Potato Head.  It doesn't matter to her what they play.  She loves the interaction even when she shoots me The Look.

She's gentle with babies.  She's happy to hold and cuddle them.  If they move suddenly or cry, the parent better be ready to receive because she'll pass the baby off pronto!  It doesn't matter if she's holding a baby or playing with a child on the floor, when she's done, she's DONE.

When the children are young, they don't notice that she's different from the other adults.  They just know they've got a great playmate who's happy to be silly with them.  Last week, with my little one, she played Hide-and-Seek each day.  They played outside.  They played inside.  They ran around the house cackling like loons.  

As the children get older, they begin to notice the differences in their interests and their intellects.  They see the world stretching out before them and realize that her world is not as expansive as theirs.  Sometimes, a child struggles with their relationship with her at that point.  They may want to correct her mistakes but quickly realize that she cannot keep up with the knowledge they are gaining.  They find themselves in a position of having to accept Lyn on her terms.  

This transition in the relationship is a good thing.  While it may not be easy to transition from pure playmates to something else, Lyn provides an opportunity for people to expand their own understanding of love, intelligence, compassion and the value of each person.

The young man in the picture above is a cousin who has grown into a fine young man.  He is a Marine and has graciously given permission for the use of this photo.  Thank you.

Saturday, November 26, 2011

Emotionally Ragged

My final night in town with Mom and Lyn was a bit challenging.  We'd had a good day when we'd gone out for breakfast and ran a few errands.  In the evening, our cousins were coming for a visit to let our children play.

After the initial greetings, the children ran out to play in the yard until dinner was ready.  My cousin spoke with Mom and Lyn, primarily focusing on Mom.  My cousin's wife and I got into a conversation.  Lyn didn't jump into the conversation as she normally does.  However, she would get up and come try to share the chair with Mom.

As the two conversations progressed, Lyn started growing agitated.  She wasn't the sole focus of the attention and wasn't sure what to do about it.  At one point, we heard the kids and wondered "Was that a happy or hurt sound?"  Lyn started pounding for the door and belligerently declared "I'll go find out."  Mom called her back and I said "Why don't we let one of the parents check?"  Lyn insisted that she knew what to do.  When she asked the children what they wanted to drink, she was pushy and demanding.

Fortunately, our cousins are well aware of what is going on with Lyn and are genuinely kind and patient people.  Despite Lyn's behavior, we had an enjoyable visit.  As they loaded into their car to head home, Mom alerted me to "expect tears by 8."  It was 6:45.  By 7:30, Lyn was sobbing.

I tried to talk to Lyn to see if there was something I could do, if she wanted to talk or needed a hug.  She shook her head at me and went to her room.  When Mom talked to her, she cried and cuddled up to Mom.  It came out that Lyn was upset that we were leaving in the morning.  She didn't want us to go.

She really didn't talk to me the rest of the night.  When she went to bed, she didn't say "good night" and we didn't say "good bye."  That didn't surprise me.  For several years now, we've not said "good bye" when I have to return home.  If we do, she always ends in tears.  It just seems mean to do that to her.  So, we don't.  We don't even say "good bye" if she's the one returning home.

The next day, Mom reported that Lyn was emotionally ragged.  She struggled through her speech therapy appointment and was taciturn afterwards.  She ended up in tears again.  They talked and Lyn was still very upset that we had to leave.  She understood that I needed to get back home.  She seemed to be grieved by the departure and that's unusual for her.

The night before apparently took more out of her than we anticipated.

Friday, November 25, 2011

Thankful For

Yesterday morning, as Lyn and Mom were watching the Macy's Day Parade, Mom asked Lyn what she was thankful for.  Lyn responded with "Christmas!"  Mom suggested that there were other things to be thankful for such as living in New Mexico, their home and their family.  Lyn thought for a second and then stated "I only have one brain cell today.  You're going to have to wait for me to think."  Mom struggled not to laugh at her response.

As Mom cut their pieces of pie for dessert, she tried again.  "Is your one brain cell able to say what it is thankful for?"  She shook her head and said "for you."  Mom thanked her and asked if there was anything else.  "No, I'm good."

When you have only one working braincell for a day, then that answer is good enough.

Thursday, November 24, 2011


Mom and Lyn are having a very quiet Thanksgiving today.  They've done so for the last couple of years.  With our family so dispersed, it is difficult for travel to happen this time of year.  Given the changes Lyn is experiencing a quiet Thanksgiving is not necessarily a bad thing.

There were years when we would join our Aunt and Uncle for their Thanksgiving meal.  My Aunt used to own a restaurant with her family.  Even though the restaurant would be closed on Thanksgiving day, there were years in which it was packed with friends and family.  When they stopped hosting the dinner at the diner, they would still host it at their house.  There was always too much food and, in all honesty, too many people for Lyn.

Regardless of where the meal is held or who hosts, Lyn always offers to pick the turkey carcass.

She will sit for as long as it takes to get all the meat off the bones.  This gives us time to clean up the rest of the meal.  Picking the carcass has become Lyn's job.  If we were to have a turkey or even a roast chicken meal at my home, she'd do the same thing.  Her patience for the task is pretty interesting.  The bones come out looking like they've been run through the dishwasher.  They're that clean.

We don't know how many more turkey carcasses she'll be able to clean.  However, we'll take each one.  I wish I could be with them today.  I'm very glad I spent last week with them.

(This picture was taken in November 1990.  We lived in Montana at the time.  Note the snow on the ground.)

Wednesday, November 23, 2011

Washing Hair

While we were visiting Mom and Lyn, I observed how Mom is already having to participate in the routine attention to Lyn's personal hygiene.  Lyn wanted to wash her hair before going out to her social group's dinner Friday night.

Out came the towel and shampoo.  Lyn bent over the kitchen sink and had Mom wash her hair there.  I asked how long this has been going on and Mom said "Oh, a couple of months."  It was evident to me that they had just adjusted to another task change and hadn't paid too much attention to it.  To my "Why?", Mom explained that Lyn had stopped washing more than just her bangs.  Even if she was to wash her hair during her evening ablutions, she would only do the bangs.  If she was asked to go back into the bathroom to do it fully, she'd come back out with just her bangs wet.  The rest of her head would be completely dry.

Lyn used to have long hair.  Actually, she's had long hair off and on through her life.  When she was able to keep her hair clean and well tended herself, she would frequently grow it out.

When she was working, Lyn would ask Mom to wrap her hair up into a bun to keep it tucked up and neat in the restaurant.  At one point, Lyn's hair was long enough that she even donated 12 inches to Locks for Love.  When Lyn had her most recent cut, 11 inches were removed.

Mom and Lyn have agreed to keep Lyn's short from here on out because Lyn is no longer able to maintain it independently.

Tuesday, November 22, 2011

Evaluation Results

The evaluation results indicate that Lyn struggled to complete a number of the tests.  For example, she stated the day of the month incorrectly despite getting the month and year correct.  She did not know the county and was unable to complete consecutive serial seven subtractions or spell "world" backwards.  She was unable to read or write a sentence and was unable to draw intersection pentagons.  (In all honesty, she could not have done those things prior to the on-set of her dementia anyway.)

Lyn's Full Scal IQ is 46 which is below the 0.1 percentile of the population.  However, her verbal comprehension index IQ score is 61 (as was mentioned in a previous post) which is in the 0.5 percentile.  Her perceptual reasoning index core, working memory index core and processing speed index core are all 50 and all in or below the 0.1 percentile.  The difference between the verbal comprehension and perceptual reasoning scores suggest she has a better set of verbal than nonverbal abilities.

Test results show that she's got impaired attention and concentration processes.  Memory problems were noted as well.  However, her previous assessments do not contain any comprehensive memory testing.  The clinician noted that, as a result, she is unable to determine if her memory issues represent a decline or  a stable low level.  Poor performance was also noted with tasks of concept learning, set shifting and response inhibition.  Lyn has defective problem solving and her capacity to profit from experience is sub-par.  Her judgment is impaired and her capacity for abstraction, including using inductive and deductive reasoning, is also impaired.  The clinician notes this means she has significantly compromised executive functioning.  However, her personality and emotional function results indicate no emotional problems.

At this time, the clinician has returned a result that Lyn has severe developmental disability requiring 24/7 care.

So, what does this mean to us?  The findings are very interesting in themselves.  They are considered a benchmark against which Lyn can be evaluated and compared again between now and two years from now.  The findings are not a great surprise or revelatory to us though because we're pretty honest in our observations of Lyn and her skills.

Monday, November 21, 2011

Neuropsychological Evaluation Tests

The neuropsychological evaluation results are in.  They are extensive and very detailed.  We'll look at them over the course of a couple of posts.  Before we delve into the results, I thought I'd share the tests the clinician used to return the results we now have.

The tests administered were as follows:

In addition to those tests, the clinician had access to the clinical reports from an evaluation one in 2000 as well as reports dating back to 1978.

I'm disappointed that the clinician who performed this evaluation did not do the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities  or the Assessments for Adults with Developmental Disabilities (PDF Link).  The tests above are geared for the regular population; not the intellectually disabled.  One, the Connors' Continuous Performance Test, is normally used in the evaluation of children with ADHD.

Sunday, November 20, 2011

Snicklefritz means "I Love You"

When we arrived for this visit, Lyn quickly called my little one "Snicklefritz."  The child is a bit literal and has been focused on names recently.  A correction was quickly offered up to Aunt Lyn before "What's a snicklefritz?" was piped from the back seat.  In unison, Mom, Lyn and I all said "Snicklefritz means 'I love you!'"

There are several definitions for the word.  It is a nickname for a child who is mischievous or a chatterbox. It is the name of a mouse in the movie Stalag 17.  Most recently, it is apparently a type of marijuana referred to in the movie Pineapple Express.  In our family, it has been around for as long as I can remember as a term of affection for a child.

Over the past couple of days, Lyn has called my child "Snicklefritz" more than she has called the child's name.  Snicklefritz is making Lyn laugh hysterically.  They've been playing Hide-and-Seek.  They've been playing with balls and blocks and building toys.  They've been sharing hugs and general silliness.  My little one accepts Aunt Lyn's use of the term and is readily responding to it from her.  I love seeing them play together.

Saturday, November 19, 2011

Maintaining Her Routine

Lyn was very excited when my youngest and I arrived in Albuquerque on Thursday.  She and Mom were at the airport waiting for us.  Other than that minor deviation in her schedule, she had a normal day that included bowling.  Lyn struggles to remember her scores and brings home her bowling league record to share them with Mom. 

The difference between her best game and her worst game since we’ve started charting her scores is about 100 points.  What is interesting to me is that it looked like her early scores were all over this place and the scores in the last couple of weeks have been coming closer together.  If she was new to bowling, I’d say she was getting more consistent in her approach.  She’s not a new bowler.  Lyn was introduced to bowling when she was in grade school.  She’s been bowling as a primary activity for at least 20 years.  Without having 20 years worth of scores available, I think our data set is too small to be meaningful, if it even can be. 

As long as she can continue bowling, she will.  As we found with a fellow bowler, she may be able to continue bowling for quite some time yet.  

We anticipate more Special Olympics award ceremonies and more hamming it up as the center of attention as she is above with the Knights of Columbus.