Wednesday, July 30, 2014

A Little Lost

Lyn needed to have the linens on her bed freshened.  Mom asked Lyn to strip her bed and put the sheets into the washer.  Lyn pulled the sheets off the bed, put them in the washer, dropped in a detergent pack and then froze.  She didn't know how to turn the washer on.  Panic prevaded her expression.

Mom covered for Lyn by asking her to pick out a set of clean sheets from the linen closet while Mom got the washer started.  Lyn went to the linen closet and stood there, looking for the sheets.  Mom reminded Lyn that the sheets were on the second shelf.  Lyn insisted there were no sheets.  Once again, Mom stepped in and gracefully covered for Lyn.

Even though no one was there to see what was happening, the covering is necessary at this point.  We're not hiding from Lyn that she cannot do something.  We're just easing the fact that she cannot by redirecting her elsewhere.  This is actually a kindness to her so that she doesn't feel frustration or increasing disappointment that she cannot follow simple directions.

When Mom asked Lyn to put the sheets on her bed, Lyn again started to panic.  She didn't know how to even begin unfolding the sheets to identify which sheet needed to go on the bed first.  Mom assured Lyn that it was ok because it was time to leave for day hab and it would give Mom something to do when she returned.

Lyn used to know that we were covering and she was very good at covering for herself.  I suspect that we're moving beyond her ability to recognize that this is happening.  Instead, we see that she is just relieved when a simple solution is presented to her.  Without these rapid little interventions, Lyn would be lost in her own home.

Tuesday, July 29, 2014

Great Questions, Kids!

This weekend, my kids wanted to know if Aunt Lyn is mentally ill.  It ended up being a great discussion in which we learned a few things.

Mental illness is a medical condition resulting in behavioral or mental patterns which cause an individual to suffer.  Mental illness can be debilitating.  There is no cure for a mental illness and the individual who has a mental illness must come to recognize their patterns of behavior in order to actively manage it.  Mental illness may respond positively to medical treatment as well as counseling.  Mental illness covers a wide range of disorders including anxiety, schizophrenia and depression.  Autism spectrum disorder and ADHD are also classified as mental illnesses.

On the face of it, Alzheimer's and other dementias seem to fit this classification.  They are medical conditions that result in behavioral or mental patterns which cause suffering.  They are debilitating and there is no cure.  However, they also currently are unable to be treated.  Alzheimer's and other dementias are not mental illness.  They are brain diseases.  The symptoms that seem to fit mental illness are the result of neurodegenerative processes; diseases which are actively destroying neurons.

Mental illness does not cause decay in the brain; brain diseases do.  A person can be mentally ill and not have increasing damage to the brain.  Mental illness causes differences in perception, processing and behavior while not destroying the brain.  Brain diseases destroy the brain and cause differences in perception, processing and behavior along the way.

My kids were able to understand this difference after a few minutes of conversation.  It was great to see them making these connections and my eldest had an Ah-Ha moment when the realization struck that ADHD is actually considered a mental illness.

This lead to the question about Lyn's brain damage.  Was it mental illness or brain disease?  It is neither.  Brain damage is an injury to the brain which is often the result of trauma.  In Lyn's case, she was born very premature and was deprived of oxygen during birth for significant periods of time.  Lyn was also exposed for high doses of antibiotics for an extended period of time immediately after her birth.  Any one of these or all three combined could have damaged her brain.

The kids wanted to know if Lyn's brain damage caused her brain disease.  I don't believe we'll ever be able to say for sure if the two are related.  We know that in individual's with Downs Syndrome, Alzheimer's is much more likely to occur than in the general population.  While Lyn does not have Downs Syndrome, it is possible that her intellectual disability could be caused by a genetic mutation which also triggered her Alzheimer's.  However, if her intellectual disability truly is the result of damage to the brain which occurred at birth, that does not rule out it being a trigger for her Alzheimer's.  Traumatic brain injuries can lead to neurodegenerative processes such as Alzheimer's years after the injury occurs.  So, it is entirely possible that her brain damage did result in the Alzheimer's.

I love it when the kids pose questions like these!




Monday, July 28, 2014

Therapeutic Changes

With the change in the ISP year just around the corner, there will be changes in the therapeutic supports put into place for Lyn.

Physical therapy is being introduced.  She will work with a physical therapist who will focus on exercises which will help with her balance and mobility.  The therapist will conduct the sessions with Lyn at day hab.  The sessions will include one of the day hab staff members so that the therapist can teach the exercises to the staff.  By teaching the exercises to the day hab staff, Lyn can be encouraged to complete the regimen of exercises multiple times in between each visit by the therapist.

Behavior therapy is also being introduced.  We've long said that Lyn "isn't a behavior problem."  However, it turns out that a behaviorist may be able to help identify strategies which may be used to ease some of Lyn's paranoia and anxiety.  We're just at the beginning of what is needed to identify a behaviorist and begin to work with one.  So, at this time, we don't yet know where or when Lyn will receive behavior therapy.  The allowance for behavior therapy has always been available to Lyn.  It is only recently, with the on-going changes in her, that it has been deemed a good time to add this therapy into her active supports.

The physical and behavior therapies will be allotted at a higher amount than the speech therapy because they are just now being introduced.  The amount allotted is also dependent upon Lyn's SIS classification which is at a level F for the year.  This means that Lyn's capabilities are lower than previously assessed when she was classified at a B or D.

Speech therapy is being reduced to a 30 hour a year limit because the state changed the allotment for established therapies.  As a result, Lyn will no longer be seeing her speech therapist for one hour a week.  We are concerned that this state-mandated reduction will have a significant negative impact on Lyn and are actively investigating switching this therapy to self-pay to maintain her at her current level of care.  If we start paying out of pocket for Lyn's speech therapy, the therapist is freed from having to write reports and keep her work on the client's case or with the client to a limit set by anyone other than the client.

None of this will slow down the progression of the disease.  So, you may ask, why do it?  The answer is simple, really.  If the therapeutic supports make caring for Lyn a little easier, if they make getting through the day easier from Lyn's perspective, then they're worth the time and effort put into them.  If the behaviorist can provide us with guidance on how to interact with Lyn when she's in an anxious or paranoid state, then we're all better off.

Caring for other may be a natural skill set for some people.  However, most of us have no idea how to interact with someone as their brain is changing and making them more fractious.  While we can handle the basics of personal care including feeding and cleaning, the additional strategies help raise the level of care provided to Lyn and help us continue to treat her with dignity and respect.


Thursday, July 24, 2014

Slam Dunk

After this weekend's Mass, Lyn greeted the priest on the steps of the church as they were leaving.  "My sister and her husband and their kids are coming to see us soon!"

"That's exciting!  Will we get to see you all when they are here?" he asked.  Lyn just shrugged in a non-committal response before bounding off to announce it to another parishioner.

The priest turned to Mom and quipped "You know she's got a slam dunk into Heaven, right?"

"I am glad one of us does!" Mom laughed.

Wednesday, July 23, 2014

Alarm Clocks

When you need an afternoon nap, you might rely on an alarm clock to help wake you up.  Lyn does too.  She just doesn't have to set her clock.  It is automatic.


Tuesday, July 22, 2014

Road Trip

In 1978, my family took a little road trip vacation around New Mexico.  New Mexico is so large, you can drive for hundreds of miles and still be in the same state.  I recently took my own kids on a road trip around some of the states near our home and it reminded me of that road trip of my childhood.

As with memories from your early childhood, I don't remember a whole lot.  I remember we had a red station wagon with faux wood panel sides.  I remember it was before the age of required seat belts and we'd sit in the very back playing card games like Go Fish or coloring as our parents drove.  I remember we visited White Sands National Park and slid down the gypsum dunes which are blindingly white.



I remember that the next day was spent at Carlsbad Caverns.  Despite wearing shorts, we needed our jackets to go through the caves comfortably.

My family and I enjoyed the road trip we just did in our part of the country.  We're also planning our trip out to NM next month.  As much as I'd like to drive the kids around NM, visiting some of these same places and having similar experiences to my 70s trip, that's just not possible now.  Lyn couldn't handle it.  It seems wrong to fly out to see them but leave them behind while we road trip too.  So, we'll let Lyn set the agenda and we'll stick close to Mom's home for our visit.

I am sure that in a few years, we'll be able to road trip NM with my kids and slide down the dunes at White Sands again.

Monday, July 21, 2014

Personal Conflict

One of the challenging aspects of Alzheimer's is that it can cause personal conflict between the person who has the disease and the people they care about or interact with most.

We've seen some of this with Lyn when she can be ugly towards Mom.  We're fortunate that she really only acts out with a snotty tone or an ugly expression.  Only once did she use foul language and that was to mutter "Well... F--- You" under her breath to me a couple of years ago.  So, why is this fortunate?  She doesn't resort to violence or rages.  She doesn't scream or throw things.  She's not tried to hit anyone at any time to the best of my knowledge.   In the Alzheimer's world, that's fortunate.

My Grandmother wasn't violent either.  Her anger was directed to cutting words like the time she disowned me.  She would pit one member of the family against another.  Usually, my Mom was the focus of her verbal and emotional attacks because Mom was her primary care giver.  Grandma was pretty high functioning for a very long time and people didn't really believe that her brain was diseased.  As a result, she could tell her sisters that Mom refused to take her to the store or church.  It didn't matter than an hour earlier Mom could come into her room and say "Mother, I'm going to the store.  Would you like to come?"

When families are in denial about what's going on or if they genuinely don't know that the personal conflict is the Alzheimer's talking, it can break a family to pieces.  Heck.  Even if they do know, the personal conflict resulting from a diseased mind can fracture families.

Grandma's sisters believed her and never questioned if Grandma's reality was different than the rest of ours.  Grandma couldn't remember if she went out in the morning.  She couldn't remember the last time she had gone out.  Thus, Mom was clearly keeping her confined to the house according to Grandma's logic.  At that time, Grandma could still tell stories about her early days.  She could listen and manipulate a conversation so that it appeared that she was following along better than she really was.

Grandma passed 13 years ago as a result of her Alzheimer's.  She has been on my mind this week and I think, at some level, I remembered it was about this time of the year when she passed.  When I spoke with Mom yesterday, she confirmed that Grandma passed on July 12, 2001.

I first met her in 1973.


She was a loving and attentive woman.  She was beautiful even though her hair had turned white in her youth and the wrinkles had framed her blue eyes.  She could be tough and acerbic when she wanted.  Her decline did fracture our family and more than a decade after her death, some of those breaks remain.  Grandma's sisters never believed Mom took good care of Grandma.  Several of them later developed Alzheimer's themselves and I have to wonder how much of the family conflict was influenced by multiple cases of Alzheimer's.

I mentioned that she disowned me.  Her Alzheimer's was evident in the early 1990's if we had realized what was going on.  In 1992, I had decided to get married and was not marrying in the faith in which I was raised.  She refused to speak with me after I spoke to her of my intentions though she never held it against my (now) husband because "it was not his fault how he was raised."  I can laugh about it now though at the time I was deeply hurt and confused by her words and actions.  It took Lyn's diagnosis and my growing understanding of Alzheimer's to realize what had happened 20 years ago.

About 18 months before she passed, I was able to see her for the last time.  I couldn't make it home just before her death because I was in the final weeks of my pregnancy and advised not to travel.  When I saw her last, she spoke to me briefly but she had no idea who I was or how I was connected to her.


I was just some nice person who came to visit.

Friday, July 18, 2014

TDP-43

A new protein has been identified at significantly higher levels in the brains of those who died of Alzheimer's than in the brains of those who didn't have Alzheimer's at the time of death.  The protein, known as TDP-43, is not new to science, having already been linked to two other neurodegenerative diseases and chronic traumatic encephalopathy.  TDP-43 is the mutated form of TAR DNA.  Everyone has TAR DNA at some level.  When functioning properly, the protein is a binding protein which attaches to DNA and RNA to provide instructions used in the creation of other proteins from genes.  However, it is the mutated form which leads to the neurodegenerative diseases.

TDP-43 is already being researched in connection with ALS and FTD.  ALS patients can develop FTD.  Not all FTD patients have ALS.  This recent research which provides substantial evidence that TDP-43 is also involved with Alzheimer's means that scientists have another possible course of study.  Additionally, the research into curing or preventing any one of the three diseases may prove beneficial to the others.

Thursday, July 17, 2014

Kansas

In 1976, my family attended a family reunion in Kansas at the home of one of my Great Aunts.  Lyn was still mostly non-verbal at that point.  Lyn had decided it was her job to take care of our young cousin and the elder generation thought it was delightful that she was so attentive to him.  His mother welcomed the attention from Lyn.  With Lyn looking out for him so well, his mother could relax and enjoy the party.

He would wander off to see what was going on elsewhere and Lyn would intercept him.  If he zigged, she zagged.  Using no words, she'd gently take him by the hand and lead him back to where she wanted him.


He never objected.  He would readily follow her.  A few minutes later, something would catch his attention and he'd wander off and the whole thing would begin again.

Wednesday, July 16, 2014

Let's Play

First, let me start with a correction.  In yesterday's post, I stated that Lyn went to a soup kitchen to feed the homeless.  I was incorrect.  She and a staff member make sandwiches in the kitchen at day hab and then take them to a nearby park to hand them out.

We now return to our regularly scheduled post.

Exercise has a wealth of positive benefits on us and there's increasing evidence that it can also help reduce our risk for Alzheimer's.  With the wave of anticipated new Alzheimer's cases on the horizon, perhaps we should all get up and move more.

While we're at it, we can play some games to boost our brain volume because that too may help reduce our risk for Alzheimer's.  Can we make cross-words a full contact sport?  Scrabble is nearly that in my house.

So forgive me for keeping this short.  I need to spend a little time on my stationary bike while doing some puzzle solving.  What will you do?

Tuesday, July 15, 2014

Growing Frustrations

As I mentioned yesterday, Lyn is having a difficult time at day hab lately.  Her frustrations have been increasing over the past few months and they cannot all be placed into the category of just resulting from the changes happening in her brain.

For the past year, Lyn's ISP has stated that she was to have time and assistance at day hab each week in which she would work on some sight word workbooks.  She and a staff member are to go to a quiet area where they will work one-on-one for a period of time.  This has not been happening.  Either the staff are not directing her to her workbooks regularly or they are directing her to sit in the middle of the common room where all the activity happens and tell her to do a couple of pages while they go off to tend to other things.  Lyn's cognitive capabilities at this point make it impossible for her to do focused work in a space with lots of activity or for her to do the work independently.

Also for the past year, Lyn's ISP has stated that at least once a week, Lyn will help feed the homeless at a local soup kitchen.  She likes helping out and feels valued when someone asks for her by name.  As with the workbooks, however, she cannot make even a sandwich without assistance and has found herself in tears of frustration after being left unattended in the kitchen.  Despite this, she still wants to go and help.  Unfortunately, only one or two of the staff members want to go and the number of weeks in which she is not able to go is increasing.

It is summer and a number of the clients like to go swimming.  Lyn does not any longer.  She doesn't want to get sun burnt and she finds the activity at the pool too chaotic.  At least one of the staff members will insist that Lyn go or complain that Lyn is not cooperating if she refuses and chooses to stay behind.  This staff member has stated on more that one occasion "When I ask her if she says she wants to go, she says "Yes"."  When this staff member is reminded that Lyn will tell you what she thinks you want to hear and that her desire to go or not go can change in a moment, the staff member is dismissive of these considerations.

It wasn't always like this.  Lyn's been going to day hab a couple of years now.  When she started, she was one of four clients.  The staff have stressed repeatedly that they're there to accommodate the desires of the clients, that the clients get to decide if and where they go.  They have stated that they have the resources to provide one on one supervision if that is best for any of their clients and that they will make that accommodation for Lyn "when the time comes."

Today, the center has at least 15 clients and several more are about to join.  At least one of the client's receives one on one supervision.  New staff have been added as well.  While this is all good for the center's business, this is not good for Lyn because she now feels like they're forgetting her.

Her brain's changes are also a factor here.  She's unable to handle the increased activity around her well.  She's less resilient to stress than she used to be and she's more easily moving to an anxious state.  She may be "at that time" when she needs direct one on one supervision at day hab.  Her brain is changing faster than the staff are accommodating her.

Mom and Lyn's case manager are currently having to actively advocate for Lyn.  This is currently a work in progress and we'll have more to report soon, I believe.

Monday, July 14, 2014

Getting Her to Smile

When I spoke with Lyn this weekend, she took some time to express that she's increasingly unhappy at day hab.  She is struggling with her own changes as well as changes that have occurred at day hab in the past few months.



She was pretty upset.  I could see she was trying to remain calm but the more she talked about it the more upset she became.  Tears were imminent if she couldn't be redirected.


Despite her emotions being a bit raw, I was impressed at how coherent she was during our conversation.  It seemed like she was having a good day and was able to express herself clearly.  I thanked her for telling me about why she was upset and about what was happening.  I tried to validate her feelings and let her know that we were very much aware of what was going on and are working to change it.

I decided to try a different tactic and said "Lyn, look up at me.  I'm going to make a silly face."  I don't normally announce when I'm going to do things like this, but I needed to in this case because she was upset and she may have thought I was making fun of her.  Fortunately, it worked.


I got her to smile and kept her at it for about a minute.  I think the smile helped change her focus.  Tears were averted that time.  It won't always work, but it is definitely worth a try.

We didn't make silly faces to each other before the dementia kicked in but we do now.  As long as she responds positively to it, I'll do it for her because she understands that I'm playing with her.  Who knew that crossing eyes and sticking out tongues would become something that lightens her for a moment and gives a different, more innocent joy to the conversation?

Friday, July 11, 2014

Parts

Just before I left on vacation, I had called Mom and Lyn early one afternoon to check on them.  I could hear the television on in the background.

Lyn suddenly screamed "You can see her parts!"  She was incensed.

Mom told me they were watching Nicki Minaj waking onto the set of the Ellen Degeneres Show.  I knew exactly which episode and why Lyn was shocked.  The actual event is less entertaining than the spook Ellen did at Halloween.


Apparently, seeing under bust is scandalous "parts" in Lyn's book.

This is just one of the reasons I love her.

Thursday, July 10, 2014

Closer and Closer

The big news this week is that a blood test has been developed which indicates with about an 87% accuracy if a person who has Mild Cognitive Impairment (MCI) will develop Alzheimer's disease within a year.  The test detects plasma proteins in the blood which are indicators of Alzheimer's disease.  The test is still in development but the initial findings are very positive.

The test is being developed to identify individuals who would be good candidates for participation in the clinical trials for treatment or prevention of Alzheimer's.  One of the concerns about the failure rate of those clinical trials is that participants already have the disease.  The goal of the test is to identify individuals earlier in their disease progression in the hope that the drug being tested will actually be beneficial or effective.

The test is not expected to be rolled out to doctors offices initially.  Some question what use it would be to have it widely available when there is no effective treatment or cure for the disease.  However, there's the realization that individuals who are currently facing memory problems are often told to jut wait a year or two to see if the memory issues progress.

So, while we've heard talk of this test before, it is good to see that progress is being made.  Hopefully, they will decide to make it more widely available so that people can have answers about the changes they are bringing to their doctor and plan accordingly.

Wednesday, July 9, 2014

Frequent Failures

Did you know that only one drug to treat Alzheimer's has been approved since 2004?  Did you know that between 2002 and 2012, 99.6% of clinical trials for Alzheimer's drugs have either resulted in failure or have had to be discontinued?  Cancer treatment trails have a 19% success rate than Alzheimer's 0.4%.  The recent study titled "Alzheimer's disease drug-development pipeline: few candidates, frequent failures" brought the above numbers to light.

The study is easy to read and brings much more to light.  For example, in the decade between 2002 and 2012, over 400 studies were conducted.  However, at the end of the study period in Feb 2014, there were over 100 underway.  That was a tidbit that the article which brought this study to my attention didn't mention.

It is significant because it would be easy to become discouraged by what was reported by the BBC.  A 99.6% failure rate is staggering.  How can we hope to ever find a cure, prevention or even something that will at least ease the symptoms when the disease is so complex that we've had such poor results after so many years studying it?

Despite the failures to date and the many more that will be had, scientists are not giving up as the 100+ current studies indicate.  They recognize that the rate of Alzheimer's is increasing and that a treatment of some sort is needed to ease the global burden we're facing.

Will it be in time?  For someone, yes.  For the wave that's approaching?  We hope so.

Tuesday, July 8, 2014

Communication Challenges

And we're back!  

Before my vacation, I noted that Lyn is having increasing difficulty getting her words together so she can convey her thoughts and be understood.  This is a common symptom of Alzheimer's.  However, with Lyn, it is actually a return to early days.  

When she was young, she had great difficulty speaking.  She wasn't able to say more than a few words until she was five.  Once she did begin to speak, it wasn't smooth sailing for her.  She still struggled to put her thoughts together and would get frustrated if she wasn't understood.  


This picture was taken during one of those times.  She was so frustrated that she had gone to the corner by the front door to cry.  

I look at this picture of her and see that same emotion for the same reason in her today.  She worked hard for a very long time to learn ways to successfully communicate.  She was very good at it.  If you spoke with her only socially or flirted with her, for many years you might not have realized that she was different.  It quickly became obvious if you asked her academic questions and even simple math could trip her up.  But she had mastered social communication.

Those days are long gone and we're back to the state pictured above.  Alzheimer's really is living your life on rewind.