Tuesday, July 31, 2012

And Yeah

Lyn's respite provider has been working with her since April.  She's a young woman who Lyn has readily accepted.  Knowing that Lyn has an upcoming appointment with the group of doctors at the University, she wrote a letter to them documenting the changes he has observed in just the last four months.  It is with permission that I am able to include segments here to share with you today.

She writes:

In the last three and a half months, I have noticed some memory changes in Lyn.  When we first started working together, she was able to tell a story with help from my verbal cues and follow up questions.  She was not able to accurately tell me dates of the event, how long ago it was, or how it got started but she was able to tell about the event and convey the emotion associated with the event.  Now, she struggles to tell me a timeline.  She tends to get the series of events mixed up within the story.  Also, sometimes even with verbal cues and follow up questions, she still cannot finish a story.  She often finishes it with, "...and yeah."  She seems to get lost in her own thoughts once she has ended a story this way.

Lyn tends to get lost in her thoughts more and more often.  She particularly spaces out when she does not have something requiring her attention.  She will start to color and then stop and just be thinking.  Sometimes if I say too many sentences in a row she will lose focus and start thinking to herself instead of listening to me.  A time that she does this the most is when she is dancing.  She says that she likes the dance that we attend weekly but often she is not mentally on the dance floor.  

Another significant change I have noticed is that she seems to be losing track of what she does and does not like.  For example, often I will ask her about something she liked a few weeks ago and she will say that she doesn't like it or she cannot remember if she likes it.

Last, I have noticed that she has started to repeat me more and more.  Instead of forming her own opinion as she did before, she is now saying what I said about the situation.  In addition, she often repeats her reaction about what is said.  For example, someone may say that they did not bowl well today.  I will answer with "Bummer.  Maybe next week you will do better."  She will respond to them by saying "Bummer" and then repeat it multiple times as if she wasn't heard.

Seeing this letter evokes a collection of mixed emotions from me and I suspect from Mom.  Lyn's respite provider confirms our own observations of Lyn's behavior.  This is a good thing.  However, it confirms the rapid and progressive nature of the changes.  This is not good.

The "...and yeah." is standard conversation now.  Lyn doesn't do it much from my children because she's able to cover her lapses by asking them questions and then saying "Good!" or something similar in response to them.  They don't watch her eyes and see her drift off.  I see it though.  Lyn does give me the "...and yeah" in all of our conversations of the last two or three months.  It is just another indicator of the changes but I fear that this one means that she's sliding into being unable to communicate at all.

This weekend, Mom and Lyn went to a restaurant for lunch.  Mom expected Lyn to order a hamburger which has long been her favorite meal when she goes out.  Lyn ordered a sandwich she had never had before and inhaled it.  The menu had large glossy pictures of the food available and Lyn had chosen based off of one of the pictures.  Mom was stunned!  Lyn's been very restrictive of what she eats for years and is highly resistant to trying new foods.  Here she was ordering something new and enjoying it.  I mention this incident because I think it is another example of Lyn forgetting her preferences.

As for the respite provider's final observation of Lyn repeating responses other's have said, it strikes me that this may be a compensation or covering technique.  I see this with children who are unsure of the appropriate response to a situation.  In my experience, they will observe a situation and know a response is necessary.  However, if they are unsure of the right response, they will wait to see how others respond and, if the response does not invoke censure from others, the child will repeat the response that seems to be socially acceptable.  It is an interesting technique.

Monday, July 30, 2012

I Didn't Think Fast Enough

Sometimes, I just don't think fast enough and regret a lost moment.

On Saturday, during our Skype session, my youngest child pointed out to Lyn that we will be visiting her and Mom next week.  Lyn stopped all conversation and just smiled.  It was a huge smile.  Her eyes closed and her smile went fully across her face.  She said nothing; just smiled.

I was so taken by her response that I stopped and savored it.

Now, I'm kicking myself for not thinking to do a screen capture or snag a photo with Skype itself.  

Friday, July 27, 2012

The Early On-Set Diagnosis

Doreen is 49 and was diagnosed with dementia when she was 46 or 47.

Patty was diagnosed when she was 51.

Brian was diagnosed at 45.

Michael was diagnosed at 49.

Rebecca was 31 and pregnant.

Between 200,000 and 500,000 people in the US have been diagnosed with young on-set dementia.  That is between 5 and 10% of dementia diagnoses.  Getting a diagnosis of young on-set dementia is challenging because, despite its prevalence, it is attributed to other causes such as stress or depression or clinicians are reluctant to give the dementia diagnosis because of a mistaken belief that it is a disease of just the elderly.

Fortunately, there are individuals like Cindy, diagnosed at 52, who show that life can still be full and active even with this diagnosis.  Given yesterday's bowling scores, I think Lyn is working hard to maintain an active life.

Thursday, July 26, 2012


Antipsychotics has long been prescribed to quell the agitation that many dementia patients experience.  Prescribing antipsychotics for this purpose is considered "atypical" or "off-label."  The US federal government has repeatedly issued warnings (2011, 2008) against this use of antipsychotics.  However, the prescriptions continue.

Antipsychotics are sedatives used to reduce hallucinations and abnormal behavior in patients with conditions such as bi-polar disorder or schizophrenia.  Dementia patients are known to have hallucinations or delusions.  Some patients become quite upset by their hallucinations or delusions.  For example, they may believe that an unknown person has entered their home and stolen their money or treasured possessions.

Unfortunately, antipsychotics have serious side-effects such as reducing the patient's life expectancy or giving them movement symptoms such as tremors which mimic Parkinson's Disease.  These side effects are particularly detrimental to patients who already have compromised balance and reduced vision as a result of the deterioration of their brains.

The government has recently announced a push to reduce the use of antipsychotics in dementia patients.  Not everyone agrees that this is a good move.

Wednesday, July 25, 2012

Catching It Early

Doctors and research scientists are looking for ways to spot dementia symptoms earlier and earlier in the progression of the various diseases and conditions which cause them.  The hope is that the earlier the symptoms can be correctly diagnosed, the earlier the patient can receive treatment which may slow the underlying disease's progression or even halt it.

It is recognized that Alzheimer's, for example, has already made inroads into the patient's brain well before symptoms are obvious to the patient or their loved ones who observe the changes.  A recent study finds that evidence of Alzheimer's can actually be found as many as 25 years before the anticipated onset of the disease.  The study was small and the results are preliminary.  However, they do give a bit of insight into just how widespread the markers may be for those who have a genetic risk for Alzheimer's disease.  Other diseases may not have the same markers that can be measured for early detection, unfortunately.

While that study looked at markers in such things as brain plaques in spinal fluid, earlier tests have indicated that a person's sense of smell may be an indicator of the onset of Alzheimer's.  Alzheimer's, in early stages, damages parts of the brain which are important for smell making it difficult for patients to detect common scents.  So, if your loved one starts showing an impaired ability to identify or detect scents, a trip to the doctor may be in order.

There are 10 additional warning signs you should be aware of and they should cause the patient to be evaluated by a doctor when they are noticed.

Monday, July 23, 2012

Bowling Bag

Lyn has been bowling for a significant portion of her life.  In that time, she's probably gone through three or four bowling bags.  In her bowling bag, she carries her bowling shoes and her ball.  Her current bag is one I gave her for Christmas about 7 years ago.  She and Mom were coming for Christmas that year and a comment was made that she needed a new bag.  I found a local pro shop and found a black and purple bag for her.  It is a basic bag with only three or four zippers on it.  She's had similar bags since she started bowling.

This week, Mom was the one to take her to bowling.  When it was time for Lyn to get her shoes on and pull out her bowling ball, she turned to Mom for help.  Lyn had no idea which of the two large zippers would give her access to her ball.  She knew which one would open to her shoes and couldn't figure out that the other large zipper would open to her ball.  Mom got her situated.

When it was time to bowl, her Special Olympics scores were lower than last week.

If she's having an off day, like this Thursday was, then her scores reflect it.  The interesting thing about this week is that after her respite provider arrived, Lyn switched over to bowling just for fun.  Her first two games, noted above were a 92 and a 109.  Her second round of games were 115 and 112.  It is a modest increase, but an increase nonetheless.

Friday, July 20, 2012

Computer Time

Lyn has had access to a computer for a number of yeas now.  I want to say a decade, but I could be wrong.  She likes to play solitaire and has been known to play it for hours.  As various computers have come through the home, she's asked for continued access to one.  This request is so incredibly easy to honor.  When we bring in a new machine, the older is allocated to her.

Very quickly, we learned that all she wanted was solitaire.  She  doesn't want to go on the internet and email has always been beyond her capabilities.  There are times when she'll open the file manager and scroll through any pictures that may be stored on the computer.  That's it.  That's the extent of her computer skills or desired usage.

Playing Solitaire

She doesn't play much on her computer any more.  It is still set up in her room, however.  When I see her in a couple of weeks, I'll see if she reaches down for Nikka the way she did with Griz.

Thursday, July 19, 2012


My previous post on coconut oil has really brought in a steady stream of comments that start off with a positive, supportive statement but then quickly spiral out into gibberish.  I have deleted the majority of the comments because they really make no sense or they are trying to link over to a site selling something.  It has annoyed me enough that I've now shut off comments for that page.

The most recent comment rambled on about an ill young woman who was given a tonsillectomy and suddenly got better.  The anonymous author went on to ask why not use unproven treatments on Lyn, implying that the tonsillectomy was an unproven treatment that cured the woman of her illness.  Chances are that she needed the tonsillectomy and it was the right treatment for her.  However, it is a good question despite the source.  

As my Mother-in-Law has said to me, "God always knew that you would turn to science."  I don't believe in "treatments" or "healing" through such nonsense as iridologyhomeopathy or applied kinesiology.  They are complete quackery.

If you wish to use alternative therapies for yourself, go for it.  The placebo effect should not be discounted.  However, when you are caring for another person, your level of responsibility is different. When you are caring for another person who is unable understand or make reasoned decisions for themselves, then your responsibility is not just to provide care, but it is also to ensure your decisions do not harm the person for whom you are caring.

Lyn cannot decide for herself.  She cannot understand why she should not have one antibiotic for a sinus infection when another is acceptable.  (She's allergic and it causes the skin on her hands to slough off.)  Because she cannot assess her treatment options, we have an obligation to only give to her medicine which has been rigorously tested for its efficacy and safety.  Lyn cannot decide to take on a risk with any understanding of the risk itself.  If we were to offer Lyn pure fat and tell her it will cure her dementia, we would be doing her a grave disservice.  The fat won't cure her and would hasten her death through obesity and heart disease.

Our obligation to Lyn extends beyond what is a current fad in health treatments or pseudoscience.

Wednesday, July 18, 2012

Dark Shadows

The dollar movie at the theater last week was a showing of Dark Shadows, the movie remake of a 1960's gothic soap opera.  The movie is a horror comedy with the main character of a vampire.

Lyn doesn't like going to movies much, especially live action movies.  Dark Shadows was not a good choice.  She was so confused and thought it was real.  She was very upset by the "red on their necks" even though she didn't realize it was supposed to be blood.  She wanted to leave but knew she would not be allowed to hang out in the lobby until the movie was over and everyone else was ready to leave.

That night, Mom was afraid Lyn would have nightmares because of how much the movie upset her.  Mom talked to Lyn about how it was just pretend.  "You know how if you spilled ketchup on your arm it would look like blood?"  Lyn thought about it.  "Well, it is like that.  It was jut pretend."  It took some time for Mom to convince Lyn that no one in the movie had been hurt and that it was all just special effects and pretend to tell a scary and silly story.

Lyn didn't nightmare, thankfully.  However, it points out that someone made a choice without factoring in the confusion that goes along with dementia.  It may be that Lyn is no longer able to tell if a live action movie is a documentary or not.  In the past, she would not have enjoyed the movie and may have even been a bit scared by it.  She would have known it was pretend though.   If she can no longer differentiate between reality and special effects, then maybe she should only go to the dollar movie when it is showing a cartoon.

Tuesday, July 17, 2012


Lyn had a week off from bowling recently.  The week off may have been good for her.  Look at her scores.  Both games ended up with 117.

She was very excited.

The bowling as competition is not being stressed for Lyn any more.  Technically, I think she's still bowling as part of the Special Olympics team.  However, she's starting to show higher scores on those days when she bowls as part of her day hab activities.  When it is just a game for fun, her scores are markedly higher.  The last time, she brought home a 135.

Monday, July 16, 2012


Years ago, when my husband and I lived in Virginia Beach, Lyn and Mom liked to visit a diner called the Purple Cow when they came to town.  Whenever they did, Lyn always wanted to get some of their purple vanilla ice cream.  Sometimes, she wanted a scoop in a bowl with sprinkles.  One time, we convinced her to get a purple vanilla milkshake.  We wanted to take it to go because we were heading down to the Cavalier Hotel and its beach front property to walk in the sand for a bit.

Lyn enjoyed her milkshake and the super saturated dye left its mark.

Lyn was mad at me for snapping a picture of her tongue.  It was worth her ire.

Happy Monday.  If you're having a bad day, may Lyn's charming expression give you a lift.  If not, maybe you should make that expression to the day and see what happens from there.

Friday, July 13, 2012

Milking It

Lyn had an ear infection recently.  Her ear genuinely did hurt.  However, Lyn is amazingly susceptible to suggestion.  If you ask "Does it hurt?", she'll start telling you about the agony she is suffering.  If it is her foot, she'll assume a limp, for example.  I'm not sure that Lyn has ever been cognizant of her attempts to manipulate for more attention in this way.  I just think she does it without thinking about it.

She was treated and her infection is gone.  On Sunday, she proclaimed to me that her ear didn't hurt at all anymore.  I was happy for the good report on her ear and she was too.

In day hab earlier this week, she started in about her ear again.  She told one of the employees that she couldn't do an activity because her ear was still hurting and not healed.  Mom gently pointed out that her ear infection was cleared up and the medicine was over.  "Oh.  Yes.  That's right." was the response from Lyn who promptly changed the topic.

When Lyn was home that evening, she again started talking about the pain in her ear.  If her ear was hurting, Mom offered, then a drop of the pain relief ear drops would help.  Lyn agreed.  Mom had not yet tossed out the ear drops and the ones for pain relief had not been needed during infection after the first 24 hours of antibiotic drops.  So, Mom got the drops and a tissue.  She put a single, small drop into Lyn's ear.  Lyn stood up and wiped her ear.  About two minutes later, she declared "My ear is all better!"  Lyn's not mentioned her ear since.

Mom can apparently work miracles.

Thursday, July 12, 2012

Stress and Dementia

The relationship between stress and dementia is not well defined.  For years, scientists have known that high levels of stress can change the brain.  Studies continue to try and determine how or if stress is a risk factor for developing Alzheimer's in later years.  Other studies are looking to see if stress relief can repair damage to brain cells.

There is a tremendous amount of analysis available on the interaction of stress and dementia.  These links should get you started.

Additional Information Source:
Midlife Psychological Stress and Risk of Dementia: a 35-year Longitudinal Population Study (Full text)

Wednesday, July 11, 2012

Documented Change

Changes in Lyn have happened at a pace that seems rapid to us this past year.  We noted here many of the changes when they happen like yesterday's observation of her not knowing where to sit in Church.  Our notes, however, are just observations which one can easily argue are subjective.  At best, they provide anecdotal evidence for what is happening with my sister.  There have been opportunities this past year for objective measures to be taken of Lyn.  For example, she was subjected to the multiple days of the neuro-psych evaluation.

In May, Lyn received her annual Speech Language Pathology Re-Evaluation.  This evaluation was performed by her speech pathologist.

Lyn has started regularly drooling during waking hours.  She is frequently unaware of the drool.

Lyn has difficulty following multiple directions or lengthy conversations.  She will indicate that she understands even when she does not.  She will forget details when speaking of an event and she interjects comments that are unrelated to the conversation at hand.  She is having difficulty in her conversational transitions and verb tenses.  Both can confuse her listeners.

Using the Expressive One Word Vocabulary Test, Lyn's score indicates an age equivalency of 6 years of age.  Her last vocabulary evaluation indicated she had the verbal skills of a nine year old.

This decline of three years in her available vocabulary really surprised Mom and she needed some time to accept the results of this evaluation.  We've noted the drooling and conversational challenges for some time.  The vocabulary score is more objective than our perception that she's inserting more non-sequiters into the conversation.

Tuesday, July 10, 2012

Lost in Church

This weekend, Lyn got lost in Church.  Mom was with her.  She wasn't wandering but she did become a bit agitated.

They had just arrived and entered the Sanctuary.  They were heading up the aisle to their normal spot in the third row from the altar.  They were early as is their practice and the pews around them were mostly empty.  Lyn was in the lead.  She suddenly turned and said "I don't know where we're going to sit!"  Mom could see fear in her eyes so she quietly redirected her with a "Why don't we just sit here?  This pew is empty."  At this point, they were at their spot.

Lyn never realized that she was sitting where she has sat multiple times each week for years now.  Mom felt her heart sink at yet another change.

Monday, July 9, 2012

Acquiring a Bucket

In our Skype conversation yesterday, Mom mentioned an activity that she would like to add to her nonexistent bucket list.  Lyn chimed in "You don't have a bucket list."  We agreed, Mom didn't have a bucket list.

So, we asked Lyn why Mom couldn't have a bucket list.  Previously, when we asked, she said Mom wasn't allowed a bucket list.  She wasn't sure what it was, but Mom was not allowed to have one.  This time, she stated, "Because you don't have a bucket."  It was the most obvious thing to Lyn and she was a bit miffed that we didn't see the reason right off.

Given this new piece of information, Mom offered up "I could go get that old bucket of Grandpa's out of the garage and use it."  Lyn nixed that immediately.  Grandpa's bucket was not allowed in bucket list usage because it was "old and Grandpa's!"  She was insistent and was not happy when I suggested Mom needed a new bucket for her bucket list items.  "Each time you think of something, you can write it down and put it in your bucket."  Lyn shot me The Look.

Mom loved the idea but Lyn was clearly unhappy that this was not going the way she wanted.  I suggested they needed to get in the car and go to a store to buy Mom her bucket right then.  Hearing "get in the car and go to a store" was all Lyn needed.  She advocated for the shopping trip, regardless of the item to be purchased.

And they did just that!  They went to the store and found a bucket for Mom.  The first bucket they found had SpiderMan on it.  The second had SuperMan.  They decided those would be too tempting for any children that may visit.  Mom settled on a small gray bucket with a wrapped wire handle.  It is now sitting right near the computer and Lyn's not thrilled to know that Mom now has no reason to not have a bucket list.

Sunday, July 8, 2012

Second Milestone

Well, we've hit a second milestone together.  We have already passed the year anniversary of Lyn's diagnosis.  Our second milestone is that one year ago today, Dementia Be Damned was started.  I'm going to take a moment to do a little navel-gazing, if you don't mind.

This blog was started as a way to tell my sister's story and why her life is meaningful.  Its other purposes are to share information about the place where intellectual disabilities and dementia intersect and to help us learn about dementia.  Unfortunately, we've found there is a dearth of information about dementia in the intellectually disabled, especially early-onset or young-onset dementia.

While I do hope that our scheduled meeting with the University group leads to more information, I also intend to continue writing Dementia Be Damned.  I beg your forgiveness, however.  I intend to switch to a Monday - Friday format.  A fair amount of change has occurred in my own life and this will ease my own workload just a little.

Thank you for reading along.  Thank you for your comments and your feedback.  I look forward to a second year of sharing what I learn about dementia and sharing stories about Lyn with you.  

Saturday, July 7, 2012

New Educational Offerings

A new on-line educational offering has come to my attention this week.  It is called "CARE: Changing Aging Through Research and Education."  It offers 5 courses of basic information about dementia.  Each course is 15 minutes in duration or less.

Another item that you might be interested in is a book titled "While I Still Can..." by Rick Phelps.  Mr. Phelps was diagnosed with Early On-set Alzheimer's Disease.  This is his first-person account of what he has experienced.

Friday, July 6, 2012

Exploring Her Options

Lyn has heard for several years that she "has options."  This phrase is regularly used by her team and they've taught her that she is empowered to make choices on her own.  This week, she decided to explore her options.

Her favorite care provider at day hab has been away on vacation. Lyn's also been recovering from an ear infection.  During the evening of the fourth, during diner, Lyn announced "I know I have options." Mom confirmed that she has options. said that maybe tomorrow (Thursday), she wouldn't feel very good and her ear would still hurt.  Mom assured her that her ear shouldn't be hurting since she's been on the prescription for a week and it hasn't been hurting for a couple of days.  Mom went on to assure Lyn that the cursing would not happen any more.  She would have fun if she went and be missed if she didn't.

Yesterday morning, Lyn again started talking about having options.  Mom again assured her that day hab would be fine and Lyn accepted this with a simple "Ok."  Mom promised that she would have her cell phone on her "just in case" as she always does.

Lyn went and had a good time.  They went for a walk and spent some time after lunch coloring.  She just wanted to make sure she still had options.

Thursday, July 5, 2012


Lyn does not like it when people use foul language.  It greatly upsets her.  Yes, there was the time she dropped an F-bomb on me a couple of years ago, but that's an exception with her and was very out of character.

One of the employees at day hab had been using foul language recently.  Lyn normally doesn't work with this employee but did while her primary care provider there was on vacation.  Each day, Lyn was getting more upset and the other employees were remarking on the change in her behavior.  After a couple of days, Lyn came out at the end of the day and sobbed "I just don't like (employee)."  It took a little bit of work, but Mom got Lyn to tell her what was upsetting her and learned it was the cursing.  Mom coached Lyn to tell the employee "I don't like it when you say that."

A couple of days went by and Lyn tried to avoid working with this employee, even offering to work in the office and help unpack one day.  Finally, she really couldn't avoid the employee any longer and said something.  Her statement brought the cursing to the attention of the day hab management and the employee has received a disciplinary note as a result.

We're disappointed that a day hab employee would choose to use foul language.  The clients do not deserve rude treatment and if they are frustrating to the point of cursing, then maybe the employee is in the wrong profession.

We're proud of Lyn for speaking up.  It is not an easy thing for her to do.

Wednesday, July 4, 2012

Happy Fourth

Lyn, Mom and I all hope you have a Happy Fourth of July.  

We are appreciative of the country we live in, warts and all.  May your barbecues be tasty and your fireworks be entertaining.  

Lyn and Mom will have a quiet evening at home as they do each year.  Lyn doesn't like the noises associated with fireworks.  They live in an area with a high risk for fires.  Lyn tends to also worry that someone will cause a fire that will put them at risk.

Tuesday, July 3, 2012

Nightly Rituals

Animals can have a huge impact on our lives.  They can bring unconditional and unrestrained love.  Nikka has done this for Lyn.  While she may have said that she didn't want another dog after Griz died, Nikka has proven to be the right dog at the right time.  Mom adopted Nikka in the hopes having a dog for herself.  Mom may pay for Nikka's food and vet bills, but really, Nikka is all Lyn's.

Lyn and Nikka have developed routines in how they interact.  Nikka has to be with Lyn, preferably in actual contact with her as much as is possible.  As a result, each night, when Lyn settles in to watch some tv, Nikka drapes herself over Lyn's lap.

Nikka would be a lap dog if she was allowed on the furniture.  She's not allowed on the furniture, but she's allowed to rest her chest and legs on Lyn's lap.

One of the other things that Nikka does is something that Lyn has dubbed "push-offs."  She will lay on her side in front of a piece of furniture and then push off of it to slither across the floor to reach her ball or Lyn.

Lyn finds this activity to be hysterical and will laugh until the tears flow.

I'm not sure what Nikka's going to do when Lyn's no longer around.  I'm just glad she's in Lyn's life now when she's bringing so much love and joy into my sister's life.

Monday, July 2, 2012

Saving Face

Late last week, Mom swung into a candy store owned by some friends of the family.  She was introducing a new neighbor to this store.

We've known the owners of the store forever.  My grandmother taught not only the owner of the store, but also the owner's mother.  I think that puts our families in contact for about 50 years.  They make a peanut butter candy that Mom loves.  Lyn favors their chocolate peanut butter cups.  When I make my annual visit home, this is one of my stops and I stock up on an assortment of items, including their fudge laced with chili.

Lyn was at day hab and missed out on this little jaunt.

Mom ordered her usual and as the manager was bagging it up for her, he asked about Lyn.  Mom gave him an update and he expressed he was aware of her diagnosis.  He then asked Mom if she was going to share the candy with Lyn.  Mom let him know that she had no intention of sharing her candy with Lyn.  They both laughed and nothing more was said.  Both Mom and her neighbor paid for their purchases and headed out.

Once in the car, Mom opened her bag and found that not only had he given her more than she ordered of her favorite candy (he always does this to her), he had dropped in three chocolate peanut putter cups for Lyn.  Mom never saw him drop in the candies for Lyn and she knows he didn't charge her for them.  He likes to spoil favorite customers from time to time.  Mom got a chuckle out of his antics.

When Lyn got home, she spotted the bag from the candy store and knew immediately where Mom had stopped.  The bags are unmarked, but are distinctive nonetheless.  "You went there without me!" She was immediately angry.  Mom let her know it was a bit of a last minute stop but her tone of voice was not appreciated.  Maybe it indicated she was too tired to go out or she didn't need what was in the bag.  Lyn backed down a bit.

She reached for the bag and looked in.  She saw the chocolate peanut butter cups that she loves and her face softened.  However, she didn't feel that she could back down too much.  "At least he got that right" was her response.

Sunday, July 1, 2012

Consistent Contact

In the year since Lyn's diagnosis there have been very few weeks that we have not been able to have a face to face conversation via Skype.  This weekend is one of those times and it is adding to the loop that Lyn is currently in because we knew in advance the conversation would not happen.  We let Lyn know not only that the conversation could not happen this weekend, we also told her why.

Lyn knows our annual patterns and knows that this trip with my family to visit my in-laws is as much an annual event as is our trip to visit her and Mom.  She knows where we are going, who we are going to see and when we will return.  None of this makes the disruption in her routine easy for her.  She just knows that we won't be speaking on the computer and she won't see us this week.

Yesterday, when she was up and ready for the day, she asked Mom at least four times about having a call with us.  Each time, Mom explained why it would not happen this week.  Each time, Lyn nodded and said "Yes.  That's right."

I don't think she's forgotten that we won't be speaking.  Both Mom and I believe that she's aware of the change in routine and is just trying to process it.  Mom assures Lyn that we'll be back in time for next week's call.

It is noteworthy to realize just how much these conversations have come to mean to all of us.  They're mundane events.  They happen each week on a very regular schedule.  We all know that for an hour or two each week, we'll be on the computers just chatting.  There's nothing major really discussed.  Each of my children make an appearance.  Some weeks, they have little to say other than "Hi Grandma" and "Hi Aunt Lyn."  Other weeks, you can hardly get a word in edgewise because they want to be center stage so much.  I could probably list off my shopping list to Lyn.  If I did, she'd listen and look serious while offering commentary on the available brands or sale prices.  Really, it doesn't matter what we discuss.  The important part is that they are consistent.

That consistent contact is meaningful to all of us; myself included.