Friday, June 28, 2013

Sharing Knowledge

Yesterday, Mom spent the afternoon providing an educational opportunity to the day hab staff and some of Lyn's team members.  Here are Mom's thoughts on the afternoon:

I wanted to explain what little I know and how it relates to Lyn. 

I drew an umbrella and wrote "Dementia" on top then listed the 5 types underneath.  As with most of us, at first, they thought dementia was "another form of Alzheimer's."  I was able to explain things we are facing such as hallucinations which we haven't dealt with yet, paranoia which we are beginning to see, frustration, excessive sleep.  I explained how short term memory is the first to show decline and used, as an example, the use of utensils during dinner.  She leaves the napkin by the plate, rarely uses a knife and eats almost everything with the spoon.  It was rather funny watching expressions because most people don't think about these things. 
One lady, a new employee, dropped her jaw when I introduced myself and told a bit about Lyn, her age, how I suspected "something" and began the rounds of medical offices.  She had never heard of early-onset Alzheimer's disease.  When we were done she hugged me and said Lyn was so lucky to have me as a mom.  My first instinct was to brush it off but instead I thanked her and said "I try" and will continue to do so.  She pointed out how so many parents "throw away the special needs child once they are out of school" and don't really bother with them.  

When I spoke about having registered her with the City in the Silver Alert program the staff really took notice. They will be calling to find out about registering several others who are special needs. It's not just for the elderly, after all.

This was a fun, upbeat and touching afternoon.  Even her case manager thanked me several times saying she learned much.  I have to admit I was on a high.  I would love to do this, educate others about this horrible disease.  I am learning, will be learning for years to come.  But as I learn I want to share, especially since no one knows about early on-set for the special needs other than Downs Syndrome. 

Thursday, June 27, 2013

Kicked in the Stomach

We've had more slippage in Lyn's skills.

This week, the employees at day hab informed Mom that Lyn now requires assistance identifying which water faucet is the hot and which is cold.  She also needs help turning the faucet on and off.  If only that were all.

Mom writes:  "On the way home this afternoon it was hot and sticky so I asked if she wanted to stop and get a cool drink.  I knew the answer for I pulled into Sonic.  The total was $1.64.  I asked if she had 4 pennies.  She said "yes" and grabbed her purse.  By the time I got to the window, I had 2 bills out.  She said "here, I don't know how to count" and handed me a bunch of pennies.  I took four and handed the remainder back to her.  She put them away, no big deal.  Don't know how to count???????  I felt like I'd been kicked in the stomach.  It wasn't too long ago she offered "change" and properly counted the pennies before handing them to me."

We'll see what happens, but those skills may also be lost.  

Wednesday, June 26, 2013

Burritos for Breakfast

Yesterday, Lyn had to get some lab work done in the morning and she needed to be fasting.  Not a problem since she doesn't eat breakfast most days.

When they left the lab, Lyn announced that she was hungry and immediately asked if they could go across the street to eat at Sonic.  Mom agreed.  When she pulled up to the speaker box, she pointed out that they had french toast sticks.  Lyn likes french toast.

"No.  I want a burrito."

Mom had to work to keep from laughing.  Lyn ordered a burrito with bacon.  It was what she wanted and she at it all.  Mom writes, "The 'nice' thing about Alzheimer's is she doesn't seem to remember what she used to refuse to eat.  I LOVE IT."

Update:  I just realized that an explanation may be needed for our international readers.  In New Mexico, where Lyn lives, a common breakfast option is to have a large flour tortilla, a type of flat bread, wrapped around scrambled eggs, fried potatoes, cheese and a meat like bacon or sausage.  It is also common to have chopped up red or green hot chile peppers added in as well.  This glorious creation is the breakfast burrito and is readily available throughout the state.  

Lyn has never liked burritos of any variety.  You can give her the components spread out on a plate without the chile and she'd eat it.  Before yesterday, however, she'd never eat them combined.

Tuesday, June 25, 2013

Making Science Possible

I have previously discussed that funding for research into a cure for Alzheimer's Disease and other diseases takes a tremendous amount of funding from a variety of sources.  Today, I'd like to highlight one grant to one lab and what is happening there.

In October 2012, the Cure Alzheimer's Fund gave $5.4Million to the Genetics and Aging Unit at Massachusetts General Hospital to support whole genome DNA sequencing in the search for the genetic causes of Alzheimer's.   This gift is just a portion of the $7.6Million the organization has given this lab's Alzheimer's Genome Project over the past 8 years.  These gifts have played a substantial role in the lab's discovery that familial early on-set Alzheimer's is not just a result of three gene mutations as has been previously found.  Familial early on-set Alzheimer's disease can also result from copy-number variants (CNVs) in the DNA.

Copy-number variants are sections of a chromosome which has too many or too few copies of a DNA section.  They are actually fairly common in the human genome.  The CNVs which are factoring into familial early on-set Alzheimer's, however, are rare and not previously identified as possible risk factors for Alzheimer's.  They had previously been identified as having neuronal functions.

The impact of this finding is not yet known.  However, as always, it may prove beneficial to finding a treatment related to a particular cause of the disease.


Monday, June 24, 2013

Birthday Wishes

My birthday is later this week and it has been heavily in Lyn's mind.  She and Mom sent me a gift in the mail.  Mom made sure to send it out in enough time for the gift to arrive before my actual birthday.  Then the fun began.

Each day, Lyn has asked Mom if they should call to wish me a "Happy Birthday."  Mom has pointed out that there were a couple of days before it actually happens.  "But we sent her the gift!"  The demands to call me were increasing each day and Lyn was becoming more and more difficult to distract.  Each time I had called in the evening, Lyn was either already asleep or was out with her respite provider.  Mom took to reminding her that they would Skype with me on Sunday and she could tell me then because it would be in plenty of time.

Yesterday, when we Skyped, I thanked them for the lovely and very useful gift of a yarn bowl.  I held it up to the computer's camera to show Lyn that it came through the mail in perfect condition.  She was happy to be chatting with me and listened as I thanked her but was more intent on telling me that they went out to lunch.  It was only later, after the conversation ended, that I realized Lyn had not actually wished me a "Happy Birthday" and that's OK.



I love the fact that she had focused enough to want to wish me well.  She's my favorite sister.


Administrivia:
I noticed that a user of Pinterest (pinner?) pinned Dementia Be Damned and a few new readers have dropped in for a look.  We welcome you and hope you stick around.

Friday, June 21, 2013

Second Anniversary

You get a bonus post today.

Not only is today the longest day, it is also an anniversary of sorts.  Two years ago today, Lyn was diagnosed with dementia.

In terms of seeking a diagnosis, this came relatively quickly.  In April of 2011, pieces finally started clicking together for us to see that something was going on.  We just didn't know what.  We didn't know if she was having seizures again.  We didn't know if she was having a cognitive decline as a result of her already present brain damage.

We've learned a tremendous amount in the last two years.  We've learned that Alzheimer's disease does not wait until you are elderly to strike, that it can be present and actively impacting your thoughts and behaviors for a decade before anyone thinks that something's wrong.  We've learned about individuals who have an Alzheimer's diagnosis as early as 25 or 30 years old and that a couple of mutated genes have been implicated in their conditions.  We've learned that mice have to be genetically engineered to produce Alzheimer's-like symptoms but that the animal model is a bit further from the human model in Alzheimer's than we would like.  As a result, drugs that work in animals do not correlate to drugs that work in humans. . . yet.  We've learned that an individual's progression through the stages of Alzheimer's is not clearly delineated or follows the same pace or exact same progression.  In general, the younger you receive your diagnosis, the faster the disease progresses.

Beyond all the Alzheimer's related experience and knowledge we've gained, we've learned that in sharing it, we help ourselves and help others.  We've made connections with others who are providing care for their spouse, parent or other loved one with Alzheimer's.  We've had numerous opportunities to hear from others with Alzheimer's as well.  Those individuals bring a voice to what Lyn experiences that she does not have to express what she's experiencing.

We are watching Lyn decline fairly quickly and know that the time will come soon where the little independence she has will be gone.  While we do not have hope that a cure will be found for Lyn, we do have hope that a preventative treatment will be found one day to help the rest of us from avoiding this disease.

Through all of this, all of what we've learned, all of what she's lost, we still find our hearts breaking with each new loss, each new change.  This is why Alzheimer's is the long good bye.  You don't get to say a simple good bye to the person.  You say good bye to the myriad facets of what made them the person they were.  In saying good bye, however, we have an opportunity to celebrate that that now lost achievement was ever made in the firs place.  We can choose to rewatch the life movie of our daughter, sister, friend and relive her moments as her life unwinds.  And we can see and honor the person she continues to be.

Lyn is still in there.

Genius of Marian

Today is the longest day of the year and the Alzheimer's Association has organized volunteers to participate their annual Longest Day events to raise awareness of Alzheimer's and funds to support the mission of finding a cure.  If you are participating in an event, thank you.  If you are not, perhaps next year.

Until a cure is found, we need to continue to raise awareness and individual stories help that.  The Genius of Marian is an independent documentary which tells the story of one woman and her early on-set Alzheimers.




The film currently does not have a wide distribution but I thought it worth bringing to your attention.  Perhaps it will become more widely available.  In the meantime, as we go through today, I hope you take a bit of time to help raise awareness of Alzheimer's and the stories of those it touches.

Wednesday, June 19, 2013

Studying Existing Drugs for Clues

An interesting study which was recently published in PLoS One came to my attention today.

It is titled "Unintended Effects of Cardiovascular Drugs on the Pathogenesis of Alzheimer's Disease."  The study examined 1,600 existing drugs which have been approved by the FDA to see if any had an impact on Alzheimer's Disease.  The interesting thing about this study is that it found some drugs seem to slow down the onset of the disease while others seem to accelerate it.

This reminds me of Viagra.  It was originally designed as a cardiovascular drug and the improved blood flow to the genitals was quickly noted as a side-effect.  Pretty soon, the drug's use was redirected to treat sexual dysfunction.  In this case, the cognitive side-effect of the drugs surveyed were not obvious so the team went hunting for patterns to see if there were any effects on Alzheimer's.  While this study and any subsequent studies may not necessarily lead to an Alzheimer's treatment, it may allow doctors to treat the intended condition while factoring in the risks or benefits the drug may have on individual's at high risk of developing Alzheimer's.


Additional Information:
Commonly Prescribed Drugs May Influence the Onset and Progression of Alzheimer's Disease

Tuesday, June 18, 2013

Choosing a Title

Through the joys of Pinterest, I chanced upon a post at Disability and Media Matters in which the author questions when he stopped being considered "Dad" or "Father" to people who inquire about his special needs son, and instead became "carer."  I think he raises a very good question and one I wanted to consider.

Lyn's diagnosis with early on-set Alzheimer's has brought the term "caregiver" into our vocabulary.  Unlike the author linked above, we had not previously been asked if we were her "carer."  She was referred to as our "daughter" or "sister" and we as her "mother" or "sister."  According to the definition of a care giver, we've actually been her family and her carers her entire life.  This is especially true of Mom because Mom has tended to Lyn's daily needs since birth.  While Mom hasn't had to dress her, bathe her or help her with toilet needs all this time, she had advocated for Lyn with physicians, petitioned for legal guardianship and managed a household in which Lyn comfortably resides.

Caregiver was not part of how we described our relationship with Lyn until just recently.  While we are still Mom and sister, we have also assumed the title of caregiver because her needs have changed.  For me, I think the difference is the terminal nature of her diagnosis.  We are there to help her and hold her hand as her body and mind fail.  That is what made the difference in my mind.

Friday, June 14, 2013

Career Choices

I could name this post Carer Choices instead of Career Choices because for the care givers of dementia patients, their choice to provide support to an individual in need impacts their careers.  Their careers may also directly impact their ability to provide a care giver.

We are fortunate that Lyn is able to remain living at home with supports for her care in place.  We are fortunate that Mom is retired and not having to manage a 40-hour work week on top of a 24/7 care for my sister.  We are fortunate that we don't have to move them here to Virginia or my family to New Mexico to take over.  We will if we have to, don't get me wrong, but neither option would be the best for her.  Joan Lunden faced some of the same concerns when she had to take on the care of her mother.  Alfred Molina is now facing them as well as he cares for his wife who has recently announced her own diagnosis.

Not every family has the resources to be able to afford a professional carer and has to make career choices.  Not every family has the hands available to care for the dementia patient.  Sometimes, they have to make tough choices.

Though that phrase, "tough choices," really applies to almost all decisions involved in this kind of care.


Additional Information:
Talking with Julie Winokur: The Sandwich Generation



Thursday, June 13, 2013

Webinar

Just a quick link to a webinar hosted by Cure Alzheimer's Fund on using stem cells to find a cure for Alzheimer's.

Be patient.  It takes a long time to load.

Wednesday, June 12, 2013

Glares Over Dinner

Even at a happy dinner party, The Look can pop up.

June 2007
Her hair was longer, her weight was less, the dementia was undiagnosed but already well in play when this picture was taken.

If only we had known then what we know now.

Tuesday, June 11, 2013

Picking Clothes

In Lyn's closet, she keeps at least three dozen shirts hanging at any time.  On Monday, when she was getting dressed, she called out to Mom asking for help.  She was lost and didn't know what to do to get dressed.  She didn't know if she should wear pants or shorts.  She didn't know what shirt to wear and it all made her sad.

Mom suggested shorts because the weather was to be a "hot heat" as Lyn would say.  It was to be 100 degrees but Lyn couldn't break past her refusal to wear shorts in public.  So, despite the heat, she settled on a pair of pants with Mom's help.  She couldn't make a choice on a shirt and just accepted the one Mom ended up pulling out for her.

This first happened a few weeks ago.  It was just one piece of clothing that day.  She struggled with her entire outfit this time.  The time is coming soon where Mom will have to lay out Lyn's outfit each day.  

Monday, June 10, 2013

Comment Response

I ended last week with an update from Mom on how Lyn's ISP meeting went.  In it, she mentioned that she would be spending some time soon (sorry, I got my dates mixed up) with the staff at day hab teaching them what she has learned about Alzheimer's.

One of our cousins posted a comment indicating surprise that the day hab staff were not familiar with Alzheimer's disease.  Mom responds with:


"It is not uncommon that most people know very little about Alzheimer's. It's like anything else, unless it touches you personally you don't learn about it.

 I was somewhat shocked during the ISP when I realized case managers and day-hab staff didn't realize how much she sleeps and how she is still able to 'cover up' when she doesn't understand.  When the ISP was over I asked day-hab staff if I could come talk to them.  I wanted to share what I've learned over the past 2 years.  She jumped at the idea and our case manager asked if she could also be there.  I said it needed to done when Lyn's not there because I will be very honest.  I will explain that this is a terminal disease, which they didn't know.

I have pictures of a healthy brain as well as an Alzheimer brain.  I will explain how "dementia" is the umbrella and there are 5 kinds of dementia.  I finished reading the book The Alzheimer's Journey and made notes.  It is such a wealth of information and practical advice.  I want them to understand how when she does "cover up" it is called "rising to the occasion."  I want them to know NOT to treat her differently but with kindness and respect as they do now.  I want them to understand how important they are in our lives since family has deserted us; other than her siblings & their families.

By using the example of the movie reel I can easily show what happens to the brain.  I'm excited about doing this on June 27th at 3pm.  Respite will pick her up at 2:30 which is about the normal time for Thursday."

I would like to add this in response as well.  Most dementia diagnosed in the intellectually disabled has been limited to those with Down's Syndrome.  It is widely recognized as a common event in the later life of those with this genetic condition.  However, dementia, particularly early on-set Alzheimer's is often misdiagnosed or overlooked in the neural normal population.  To have it identified and acknowledged, even grudgingly, in an individual like my sister who is intellectually disabled without Down's, it extraordinary.  I think this was only possible because we knew what she was able to do before and we were able to specify clear example of a loss of lifelong skills like turning the car radio to her favorite station or knowing how to turn on the washing machine.  We were met with "So?  That's not unusual for this population."  We had to counter with "Yes, but it is unusual for HER."  

I honestly believe that Lyn would have been overlooked or misdiagnosed and allowed to decline faster if it were not for the attentive care she receives.

Thursday, June 6, 2013

Updating the ISP

Mom writes:

The ISP meeting on Tuesday was good.  Lyn worked very hard to focus on what was being said.  Every once in a while, she'd look over to me with the puzzled look.  I'd explain in very simple language what was being said.  

She lit up like a Christmas Tree when the lady from day-hab said they could get a Wii system so she could bowl and do exercises.  She's been asking me to buy one.  I told her I could get one but it would have to sit in the box till her brother-in-law is here later and could hook it up.  She pointed out that I'm not as smart as he is.  lol

I found it interesting when the Case Manager was going over different points and mentioned that in the past Lyn was able to be alone for up to 5 hrs.  I shook my head.  Lyn saw that so she shook her head as well.  She was asked if she was comfortable to be alone for one hour by herself.  She said "no, not at all.  I need mom here."  Everyone looked surprised but I wasn't.  So it's in there, officially, that she's not to be alone at all.  We kept telling her that we want to be sure she is comfortable and taken care of.  She would try very hard to be part of the conversations but wasn't able to.  She would begin to talk about something far removed from the topic at hand but everyone was polite and listened.  I would bring her back to where we were.  

We will continue as we have been the past year.  She has asked me a dozen times today what will happen to her.  I assure her nothing will happen.  She will continue with day-hab, continue with respite and being here at home.

She still is sleeping 10-14 hrs a night which seems to surprise everyone.  Haven't they been listening?  

I did ask the executive assistant from day-hab if it is possible for me to come talk to them about Alzheimer's.  They jumped at the chance.  She said they really don't know anything about this horrible disease.  I said I am learning but want to share what I've learned the past 1.5 years.  I just want to know that everyone who deals with my daughter, on any level, is as aware as possible of the disease.  Be aware of the probable changes we face.  They looked very surprised when I said that this is a terminal disease.  It'll be set up for a Thursday since her respite picks her up that afternoon.  I'll arrange for that to happen about an hour earlier than usual.  I don't want her in the room so I can be blunt.

Wednesday, June 5, 2013

Transformative Words

Just before Easter, I received a letter, a real, hand-written letter from a gentleman who reads this blog.  He is a friend of Mom's and sent the letter through her to me.  I've read the letter a couple of times and have needed time to mull it over and consider the contents before acting on it.  You see, it is not often that you receive word that you've profoundly impacted someone's life.

This letter shared with me the story of the man's anger at the loss of his special needs brother during his teens and how he carried it with him until this year when he started reading Dementia Be Damned.  This letter shared how the posts here helped the gentleman see his brother's life and death is a different light and allowed him to let go of his anger, allowed him to forgive his mother the choices she made and allowed him to breathe again.

When I first approached Mom with the idea of a blog documenting Lyn, her changes and any information we could find on dementia in the intellectually disabled, we both acknowledged a hope that  maybe somewhere, sometime the blog would prove useful to someone.  What I was thinking was that someone might read our descriptions of the neuro-psych evaluations and feel more comfortable seeking one out.  We also hoped, and still do really, that another care provider of a person like my sister would find the blog and feel like there are others in the world who understand what they're seeing and feeling. What I did not anticipate is the love and acceptance we have for Lyn to allow a person to see his own history in a different and transformative light.  As a Mom, I hope to raise my children so that I guide them into being good adults.  As a foster parent, I hope to calm a fearful heart and provide a place where a child can feel safe enough to begin healing.  As a blogger, I hope to share information and stories.  This, however, is beyond my hopes.

To say that I am humbled is an understatement.  I found myself overwhelmed by his letter and had difficulty accepting that I and this blog could have such an impact on someone.  I owe this gentleman a personalized response and needed the time to piece my thoughts together so that I could adequately respond with the depth of my own feelings.  They have been examined and sorted and I believe I can now respond in the manner he deserves.

Until he receives my letter, however, I want to publicly extend my thanks for the time, emotion and care he poured into his words.  I am honored to have the opportunity to play any role, large or small, in a person finding peace in themselves or with their family.  I am touched by his faith and appreciate him sharing his story with me on such a personal level.

To my friend, if I may call you that, know that if we ever have the opportunity to meet in person, I have a hug just for you.  Thank you for reaching out and touching my heart.

Tuesday, June 4, 2013

Still Sensitive

If you remember, Mom was recently able to convince Lyn to purchase a pair of shoes with velcro closures.  She picked out the black sneakers because black was more comfortable than white.  She was happy about the purchase and showed them to me during our Skype conversation that week.  She even wore them a couple of times.

I don't know if something was said to her.  It is entirely possible, after all.  However, Lyn has stopped wearing the velcro shoes.  She went back to wearing her sneakers with the laces.  She's still clever and still able to cover her short-comings by refusing to untie them at all.  She slips them on and slips them off.  This is, of course, wearing them out faster.

Mom and I have agreed that when she breaks these shoes down enough to be disposed of, we'll point out that she has a perfectly good pair of shoes and doesn't need to buy another pair with laces.  This may be a bit of a challenge, but we'll see how it goes.

I raise the issue of "something being said to her" because  one of the other participants at day hab has made some nasty comments about her appearance prompting her to want her legs shaved for when they go swimming.  I would not be surprised to learn the other client had also made a comment about her shoes.  I could be wrong and she may just still be sensitive to the thought of velcro closures as though it is admitting defeat.

Monday, June 3, 2013

Fresh and Hot

Mom and her neighbor took Lyn to lunch this weekend.    Lyn wanted fries with her sandwich.  She was feeling a bit brassy and asked her waiter to make sure the fries were "fresh and hot."  Mom pointed out that the restaurant always made their fries fresh and hot.  Lyn wouldn't really accept that and expanded that "was how I like them."

When the waiter brought the fries, Lyn immediately took one and bit into it before the waiter could turn around.  I am sure he was waiting for her to pronounce them acceptable.  She savored her bite and declared "they are just the way I like them."


Administrative note:  Blogging may be intermittent this week due to a renovation underway in my home.  We're hoping to have it wrapped up in a couple of days, but then we have to return the furniture to the rooms under work.