Saturday, June 30, 2012

A Tough Week

Lyn has had a tough week.

She had to deal with the move of day hab to a new location.  As we found earlier this week, that she is finding the move very stressful.

She also had to deal with her favorite employee there being out on vacation for the week.  Changes in who she's working with can really set her off.  She doesn't know it yet, but her current respite provider is going to have to reduce her hours because the fall semester at the University is starting back up in August.  Another respite provider has already identified and this one is someone Lyn's already familiar with which is a bonus.

On top of all of this, Lyn and Mom learned that a dear friend has only a couple of weeks to live due to an aggressive, metastasized cancer.  The friend's diagnosis is a shock to everyone and there's nothing that can be done beyond palliative care.  Lyn has been quick to cry about this for the past several days.  She's trying to process and to understand that this lovely individual who has been friends with Mom longer than Lyn has been alive will soon pass.  Even the activities and the efforts of the staff at day hab have not been able to distract Lyn for long.  It is hard enough knowing that this friend is in a terminal state.  It is even harder not knowing or being able to help soothe Lyn's grief.

Friday, June 29, 2012

Zoo Visits


A couple of years ago, Mom and Lyn visited during early Spring.  We spent a quiet day at the National Zoo.  This picture was from that day.  She humored us when we asked to take her picture.  I know we won't be able to visit that zoo again together.  However, we still can visit the Rio Grande Zoo when I visit New Mexico.

I don't know just how many times we've visited zoos together over the years.  I believe it has been over a hundred.  There are moments during these trips when she's focused on the animals.  Most of the time, she's just along for the walk.

Thursday, June 28, 2012

The New Location

Lyn's day hab has been in the process of relocating from its original location to a new facility for the past couple of weeks.  Lyn has visited the new location several times already.

Yesterday was the first day that the new facility was used for the clients.  The change has really thrown her for a loop, resulting in belligerent and agitated behavior.  When Mom picked her up in the afternoon, Lyn got in the car and announced "I'm just kind of stressed."  Mom asked if it was from the move but Lyn didn't know what was stressing her.  Mom got her to drink some water and suggested a nap.  Lyn decided that it would help after all and slept for over an hour.

It is going to take her a while to adjust to the new location.  She will but she'll just be a bit stressed in the meantime.

Wednesday, June 27, 2012

Fish Oil

Recently, I attended to my annual eye exam.  While in the waiting room, I encountered some lovely seniors who inquired about a crochet project I was working on while waiting to be taken back.  One lady was more talkative than the others and our conversation quickly turned to dementia.

She confided that she was taking a plethora of dietary supplements including coconut oil and fish oil to stave off dementia.  She was very worried about it because her sister had died about six months ago from Alzheimer's Disease.  She wasn't sure if she should believe her doctors when they said "Misplacing your keys is normal.  Not knowing what your keys are for is when you should be concerned."

We talked briefly about coconut oil and the risks to her heart.  I asked her to look into the information available on-line about it.  She politely shot down the suggestion indicating she was "not much one for computers."  I had to concede her point and so I asked "Would you eat a couple tablespoons of pure fat each day simply because someone asked you too in connection with dementia?"  She was fairly disgusted by that concept and said she would ask her doctor about it.

She mentioned fish oil was also in her supplements, having been suggested by our mutual doctor.  I asked if the fish oil was for eye health or dementia and she wasn't sure.

When my turn came around, the doctor also suggested that I start taking fish oil supplements.  I asked the reasons for it and the doctor explained that she believed fish oil helped maintain good vascular health and good vascular health helped maintain your eyes longer.  She was quite dismissive of using fish oil as a ward against dementia.

The research on fish oil is mixed at this time.  As recently as last year, it was being touted as a possible aid in the fight to stave off dementia.  This month, however, saw the announcement that it is not effective.  The vascular supports of fish oil do not seem to be in question.  So, if any benefit is derived from fish oil, it is in maintaining a healthy heart and vascular system.  Unlike coconut oil which would directly negatively impact your health, fish oil still has benefits even if not directly against dementia.

Tuesday, June 26, 2012

Final Frame Counts


Lyn just knows that she bowled a 130 and a 111 instead of the 130 and 98 that were noted as her official scores last week.  She was not happy that "they" didn't give her the 111.  She no longer recognizes how the scoring works and that her final frames count.

While she was mad about her Thursday bowling score, she has admitted to me that she likes bowling just for fun more these days than she does the bowling for Special Olympics practice.  If she's verbalizing this, it may be an indicator that she'll soon transition away from competitive bowling and just bowl as a day hab activity.

Monday, June 25, 2012

Healthy Aging Brain Care Monitor

The Healthy Aging Brain Care Monitor is a questionnaire designed to provide a reliable and easily repeatable measure of the changes experienced by the dementia patient and the patient's primary caregiver.  The monitor is being described as a "blood pressure cuff" in its ease and efficacy in measuring these changes.  There are two versions of the monitor.  One is targeted to caregivers providing responses.  The other is geared for dementia patients who are still able to respond for themselves.

The questions are grouped into four categories; cognitive, functional, behavioral and a caregiver stress scale.  When I first read the description of the monitor, it was not obvious that the monitor is measuring the caregiver in addition to the dementia patient.  This is a novel approach in a clinical setting and one I hope spreads.

A few of the questions would not be ones that apply to Lyn.  For example, Lyn has never handled complex financial affairs such as balancing a check book.  However, the majority of the questions would be applicable to her.  Maybe it would be worth downloading and providing a completed form to her physician with each visit.


Sunday, June 24, 2012

University Group

A year ago, Mom was made aware of a group of doctors associated with the University of New Mexico who are focused on helping intellectually disabled individuals.  The group apparently consists of several specialists including neurologists and cardiologists.  One of Lyn's team members passed to Mom the application forms that would need to be filled out in order for the group to consider taking Lyn on as a patient.  Mom didn't fill out the forms because the forms led her to believe they had a different focus.  The forms asked a tremendous amount of questions that were centered on any sexual abuse a patient may have experienced.

Fast forward to a few months ago when Mom was able to start attending the Alzheimer's support group.  Mom continues to attend and is finding it very beneficial.  The support group's facilitator works to help connect participants to resources in the community which may be of use to them.  She approached Mom with the information about this same group of doctors associated with the University. This time, however, she was able to confirm Lyn's needs were within the group's area of focus.  She additionally took the extra step to put Mom in direct contact with the head of the group.

Mom has now had a couple of conversations with the lady in question.  Mom has gathered all the information about Lyn that was needed for the group to initially review.  Gathering the information proved to be fairly simple because of the notes that Mom has to keep and the reports she has to turn into Lyn's case managers.  Since Lyn's diagnosis last year, Mom has been keeping copies of all test results.  The University group has set an expectation that they may ask Lyn to repeat tests or take new ones better targeted to an intellectually disabled patient.  I deeply hope that a new neuro-psych evaluation is performed using the tests that are not geared for a normalized population.

An initial meeting has been set up.  The meeting will involve doctors from the University group, Mom, Lyn and at least two members of Lyn's team.  I also get to attend.  The meeting happens to be scheduled while I'm in town and the representative from the University was most welcoming to having me participate in the discussion.

We don't know what, if anything, will result from Lyn's interaction with this group of doctors.  Maybe the interaction is one that benefits their understanding of intellectually disabled patients more than it benefits Lyn.  That would be a wonderful outcome in itself.  If nothing else, this may provide Lyn an opportunity to be evaluated and treated by doctors who accept dementia in a patient of her very young age or in a patient with her existing disability.  It would just be nice to have someone say "Yes, I see." instead of "I won't list this as dementia because she's still able to communicate" or "...because I don't believe it is possible in someone her age."

Saturday, June 23, 2012

So Excited

We secured our travel plans for our annual pilgrimage home and have let Lyn know that we'll be there for a week.  Our visit will be in early August.


When we sent Mom our itinerary and Lyn knew she had it, she nearly squealed her "I'm SO EXCITED you're coming!"  I don't think she really believes that we'll make it until she knows the itinerary is done.

She now has something new to focus on until we get there.  I bet she's already had Mom circle our arrival date on the computer.

Friday, June 22, 2012

And She Worries About Me?

Lyn has her routine of asking about my family, my pets and me with each phone call.  She seems to find it important to know how each member of my household is doing or what activity they are currently working on.  It doesn't matter if I say my little one is asleep and my eldest is watching TV.  She's just as interested every time.

She's also quick to pick up on the days when I am a little off.  If I sound tired or mention that I'm not feeling well, Lyn is immediately focused on that.  She readily offers me advice.  If I've had a busy, meeting filled day at the office, she'll advise me to go take a bath and go to bed early.  This is very sound advice that I rarely listen to.  (Little sisters are like that, you know.)  If I'm ill, there's no telling me what directions she'll give me in her most earnest tone.  It may involve Tylenol and juice or an urgent plea for me to see my doctor.

Earlier this week, we spoke on the phone and I had a trifecta of issues that worried her.  I was fatigued after a full day of work, was sore and achey and had an infected scratch from my kitten.  All were minor ailments that would not warrant notice with most people.  Apparently, neither of us fit that category because I mentioned them and she worried.  She advised sleep, Tylenol and aloe for the scratch.  Again, sound advice that I followed in my own way after our call.

After Lyn issued her advice, she turned to Mom and declared the very familiar "She has to go!  She's not feeling well."  Mom took the phone from Lyn and we both chuckled.  Despite the fact that I was tired and having a hard time focusing on much of anything, we continued to chat for a good half of an hour longer.  As the minutes ticked by, Lyn kept glaring at Mom.

When The Look wasn't enough to get Mom to hang up, Lyn started muttering about keeping me on the phone.  Mom would comment on The Look or the mutter and we'd chat on another topic for a while.  We both were well aware of Lyn's growing irritation and we were both amused by it.  Yes, we could have calmed her down by hanging up, but it was not something we felt was necessary.  Lyn doesn't have to get her way on everything.

Eventually, we did hang up.  Lyn, however, didn't give up.  She spent the rest of the night glaring at Mom and muttering about the phone.  I take all this as evidence of her love and concern.  I just have to laugh though.

She's the one with dementia and she worries about me?

Thursday, June 21, 2012

Mom's Year

Mom writes:


I can't believe it's been a year since the dreaded words were uttered, "early on-set dementia."  June 20, 2011 was that day.  Today, it seems it was just 2 or 3 months ago.  On one hand, it seems there have been lots of changes but since we are dealing with a new norm, it seems like just a few changes.  

I hate admitting she is no longer as independent as she had been.  The worst is watching her sort dirty clothes and leave them on the floor, unable to correctly put them into the washer, much less turn it on.  But I am thankful she can still put them into the dryer and turn that on.  I try to find something funny about each situation.  In this case, if I simply do her laundry while she's in day hab, I know when she gets home she'll be mad because she doesn't want me in her room.  I just tell her I'm sorry, I was just trying to help. 
 
Seeing the blank or confused look in her beautiful blue eyes breaks my heart.  I don't believe I'll ever get used to it.  When I see her like that I am amazed at how soft my heart becomes and how my patience rises to surface.  By nature, I think I am demanding and impatient if something isn't done correctly.  You know what?  You nature can be changed.  Let me give you another example.
Knowing I am dealing day to day all alone in this journey I have proven I really don't need others.  Perhaps I'll sing another tune next year.  I do tell Nikka what's going on, how I feel, how frustrated I am and she listens and wags her tail.  But I've gotten it off my chest and feel much better.

Nikka, dear Nikka, was put in our lives by a Higher Power.  I wish you could see the two of them together.  The dog is protective of her and won't let her out of sight.  She wants to touch Lyn all the time.  She gets nervous when Lyn first goes to bed but finally settles down.  She's super excited when she hears Lyn coming down the hall in the  morning.  She quivers with excitement.  I'm thrilled with this dog.

I'm learning not to say "do you remember.........." because chances are that she doesn't.  I'm learning there is no future in "correcting" what she says.  I look back at how we started joking that between us we have 4 brain cells and how they seem to jump from one of us to the other.  I'm learning to just "go along" with whatever she might be trying to tell me.  For example; on 6/16/12 she & her respite spent the day downtown at Civic Plaza at the State Centennial Summerfest.  They each got a "tattoo" that said State Centennial 1912-2012.  When she showed it to me for the 4th time she said "a little girl about 2 or 3" said to stick out my arm.  I smiled and chuckled to myself just picturing a 2 yr old handing out temp tattoos.

Just as I did 41 yrs ago I take care of her by doing what my heart and gut tell me to do.  My goal is to keep her healthy, happy, safe and secure.  I reassure her of my love and how we have a good home where she has 2 bedrooms to live out of and I only have one.  No, I wouldn't do anything differently than what I've done.  Why?  I'm learning as I  go along.  I don't look back and say "shoulda, woulda or coulda."  I just look forward.  I try to be prepared for whatever will come.  It's a learning process for anyone dealing with dementia.  

It would be nice of others could or would take a small part of her life but I truly understand their position.  I don't want others to think I'm pointing fingers because I'm NOT.  I hope no one is in this position with a loved one because it's a rough road to travel.  I remind myself that I've prayed GOD will take her before HE takes me.  Looks like HE will answer my prayer.  I would then be happy knowing she is with HIM and will be "normal."

My emotions don't run rampant as they did a yr ago.  I am learning to push them down into a controlable place.  

Wednesday, June 20, 2012

Decreased Memory

One year ago today, Lyn was diagnosed with early on-set dementia.  The physician actually wrote "Decreased Memory" in her charts.

This diagnosis was brought on by the conversation her team had in her 2011 ISP meeting.  During that meeting, as each member of the team spoke, a picture was revealed of Lyn's lost skills.  At that time, they noted that she had lost the ability to turn on the washing machine and the ability to turn the car radio to her favorite preset station.  The various meeting participants had different examples and it was the first time they had come together and started comparing notes.

The diagnosis of decreased memory kicked off a series of tests.  Lyn had an MRI, lab work and the neural consultation scheduled.  The tests were scheduled to start on July 7, after Mom and Lyn returned from a week's visit to my home.  While that first official diagnosis was "decreased memory," Lyn's physician was also using the word "dementia."

It hit Mom and spun her for a loop.  She didn't even discuss it with me until a day or two into their visit.  She needed time to process it.  She needed time to grieve for Lyn and time to steel herself for the journey they find themselves on today.

During this visit, I pitched the idea of this blog to her and she was open to considering it.  We started it a couple of weeks later on July 8.

The past year has seen more changes in Lyn.  Her speech is more stilted and discombobulated.  Sentences are frequently left incomplete and the topic is dropped easily.  Lyn drools more now, even when she's awake and conversing.  Her evaluations continue to show decline.  She is more moody and easily frustrated.  However, she can still be redirected.  She requires oxygen for each night's sleep and she no longer tolerate of any travel that takes her more than an hour from home.  Her world, while still busy and engaged, is definitely shrinking and becoming even more regimented than before.

Lyn remains capable of love, especially towards Nikka.  She expresses concern for my children and gets excited to see them on camera during our weekly Skype sessions.  I can see her work hard to ask about them by name each time we speak.  She has decided they are important to her and for this effort, I am grateful.

Lyn continues to drive me to read and write about dementia each day.  Unfortunately, the overlap of information about dementia and about the intellectually disabled who do not have Down Syndrome is vanishingly small.  I look but find nothing.

In many ways, we are in uncharted waters with Lyn.  It is not that we are the first to experience dementia in an intellectually disabled loved one.  It is that we may indeed be the first to document it, to publicly share it and to seek more insight.

So, even as Lyn's memories continue to decrease, we will continue to document and remember for her. She deserves at least that if not more.

Continued tomorrow with Mom's thoughts.




Tuesday, June 19, 2012

Repose

1971
Seven months after she was born, Lyn finally started to chunk up.  You can see she was also in her red hair stage.

Correction:  I didn't pay close enough attention to the date on the photo.  Lyn was 4 months in this picture.  At 3 months, she finally hit a weight of 7 pounds.

Monday, June 18, 2012

Diabetes and Alzheimer's

Diabetes has been known for some time to increase the risk of vascular dementia because diabetes damages blood vessels. However, it also is a risk for Alzheimer's and scientists have found a possible genetic link between type 2 diabetes and Alzheimer's.  The experiments which are suggesting these findings use a nematode which is able to replicate amyloid proteins so well they serve as a human analog.  The research found that one gene found in many Alzheimer's cases disrupts insulin pathways.  Type 2 diabetes also has this same disruption of insulin pathways.  The reason this research is exciting is that it suggests a path to study which may lead to treatments of both diseases.

Additional Information Sources:
Gene May Link Diabetes and Alzheimer's
Single gene may link diabetes, Alzheimer's

Sunday, June 17, 2012

Happy Mother's Day Encore

I propose that Mom gets recognized for both parental days of the year.  She has been a single parent since 1978 and really tried to be as comprehensive a parent as possible.

We never really celebrated Father's Day because after the divorce, our father did his best to disappear into the ethers.  The day was somewhat of a painful one for me and, I suspect, our brother.  For Lyn, it was just another day.  It has passed her unremarked each year.  She may say "Happy Father's Day" to my husband during my Skype session with her this afternoon.  She may not.  It is hard to say.  He's a good father and she'll be quick to say so if she realizes it is Father's Day.  However, she won't apply it to herself.

In 1996, I briefly re-established contact with our father.  I met him and spent a little time with him.  There were a series of letters and phone calls between us.  When Lyn became aware of this, it caused her great agitation.  She wanted nothing to do with him and was actually afraid of meeting him.  She didn't want him to contact her the way he was in contact with me.  We had to promise to not tell him how to reach her or to speak about him around her in order for her to calm down about it.  Her fear originated from confusion.  She didn't understand who he was, why he was gone or what he wanted in communicating with me.  She didn't understand why I might have wanted contact with him, either.  So, we promised her she never had to speak with or meet him.  Not long thereafter, the attempted building of a relationship between my father and me ended in spectacular failure.  I've never spoken to him again.

I know my aborted attempt at a relationship was painful for Mom to witness.  He had abandoned us after all.  I know the fall out with Lyn over the attempt was also painful.  I was so sad to see her scared and confused over someone with whom she had no contact.  Mom calmed Lyn down and patiently waited for me to have the understanding about my father that she knew was coming.  She knew he would make false promises and have no follow through.  She knew he would rely upon charm.  She let me experience and decide for myself about him.  It was painful for us all; but it was the right thing for her to do and I appreciate her for it.

I cannot spell out all the reasons I appreciate my Mother.  They really are that numerous.  Ultimately, what matters is that she's our Mom and she's loved us like no other person has.  She's stuck with us and supported us and continues to give her all even now.  She's my measure of what it takes to be a great parent.

So, forgive me.  I'm going to honor my Mom today while you honor your father.

Thank you, Mom.

Saturday, June 16, 2012

Animal Crackers

Lyn takes her lunch with her to day hab.  The lunch containers that Mom purchased for Lyn have worked beautifully.  Mom can portion out a lunch from the remains of dinner into the containers and Lyn does not feel that her lunch is made of leftovers.  Lyn hates leftovers.

Lyn likes to have a sweet with her lunch or as part of her snack.  So, while Mom was out getting the week's groceries, she purchased some Nilla Wafers.  That didn't go over so well.

When Lyn got him with her respite provider and Mom mentioned the selection, Lyn got very snotty.  "I distinctly remember telling you to buy animal crackers."  She hadn't but there was no point arguing with her.  Mom pointed out that her tone of voice was not appropriate.  She also pointed out that she was done shopping for the weeks, the cookies were purchased and "you like Nilla Wafers too."  After a moment or two more of resistance and tone of voice, Lyn gave in and accepted that she would have Nilla Wafers instead of animal crackers.

I know these interactions are trying but Mom, despite her frustration, really does handle it quite well.

Mom also keeps us up on Lyn's weekly bowling scores.  This week, Mom says Lyn was tired going into the bowling.




Friday, June 15, 2012

Never Too Old

Montana 1991

Lyn's never too old to take a little time to play.

Summer has started and she's already been to a baseball game with her respite provider.  She's gone to a  cook out, bowling and swimming.  She's looking forward to our visit in August and some of the in-town activities we will do like picking up breakfast burritos before hitting the Natural History Museum. Her life continues to be active and full.

Thursday, June 14, 2012

Fear

Yesterday, I mentioned that fear is a common emotion expressed when people discuss dementia; particularly Alzheimer's.

We may define ourselves by what we do.  Think about how common it is for someone to say "I am a mom", "I am a systems analyst" or "I am a police officer."  While these statements are true on a surface level, it is a short-hand way of identifying ourselves by all of the experiences we have had or all of the training we have completed.  Really, this is not who we are; it is what we do.

To define who we are, some say we need to look at our values, our thoughts or our memories.  Maybe it is a combination of all these things in addition to our achievements and our actions.  For many of us, we have a hard time articulating who we are because we just know.  It becomes incredibly difficult to explain something so obvious and yet so layered and meaningful.

While we may not be able to express that which defines us, we are able to express what we fear about dementia.  The fear I hear expressed by others when the topic of dementia is brought up seems to come from a couple of common themes:

We are afraid of loosing ourselves.  If we cannot remember or continue to express our values, thoughts or memories, then how can we still be us?  If we cannot recall our achievements and if the disease removes our ability to act as we have before, are we still ourselves?  If I am not me, then who am I?  Am I just a shell of a person?  Is the spark that is me gone or diminished to such an extent that I am functionally dead?

We are afraid of loosing the ability to control our bodies.  As a brain progresses through the disease expressed by the dementia symptoms, the physical body is dramatically changed.  Hair and teeth may fall out.  Posture and muscle tone go slack.  Drooling starts or increases.  Physical frailty sets in.  The fear of loosing control over our bodies speaks to our desire to maintain dignity and control.  If I cannot tend to my personal hygiene, then am I still an adult?  Am I still a functional person?

We are afraid of suffering.  Dementia causes confusion and frustration.  To many, confusion and frustration are equated with suffering.  Physical pain in the dementia patient may be hard to detect because of impaired communication skills.  Untreated pain causes suffering and we fear being trapped in a painful body with no way to communicate a need for help.

We are afraid of being a burden.  At least in the U.S., we are often taught to be self-reliant and to not rely upon assistance from anyone; even family members or close friends.  We are taught to not impose ourselves on others with our needs and have difficulty accepting assistance even when it is freely offered.  We do not want to feel we are indebted to another with no way to repay that debt.

We are afraid of the length of the disease.  From the time of diagnosis, does the dementia patient have one year?  Three?  Five?  Ten?  We, unfortunately, do not know.  The diseases which cause dementia progress differently with each patient.  We have broad patterns; but nothing definitive.  We cannot say with any certainty, for example, that Lyn will be alive in 5 years.  We also cannot say how long Lyn will still be able to engage in a conversation no matter how stilted it is.

Of all of these fears, the one most strongly expressed to me is the first one; we are afraid of loosing ourselves.  I have heard several individuals, including a dear friend, clearly state "I would rather be dead than suffer a cognitive impairment."  When I heard these statements, I used to wonder if the speaker would even be aware of the changes.

Lyn has taught me that awareness is there.  She knows her brain used to not work backwards.  She knows her thoughts and actions used to be smoother and less frustrating.  Even Lyn is cognizant that her brain is changing and impacting her in ways she doesn't like.  I do not know how long she will have this awareness.  It is this awareness of the slips that I think we actually fear more than loosing what we define as ourselves.  The changes are hard enough.  Being aware of them and being powerless to stop them is the stuff of nightmares.

I wish I could allay all these fears.  I cannot.  I just try to not let it keep me from living with what I have today.


Wednesday, June 13, 2012

Stigma

A stigma is a mark that is characteristic of a disease or a mark of disgrace or infamy.  "Shun" is frequently used in connection with "stigma."  You can easily find headlines that a bank will shun a bail out to avoid the stigma of failure, for example.  The avoidance of an undesirable mark is common.  Shunning is a social rejection which is an institutionalized or socially acceptable form of avoidance or rejection.

Dementia has a stigma.

Dementia's stigma is multifaceted.  It causes both the dementia patient and the caregiver to be shunned.

The dementia patient is frequently shunned by friends and family members who are not caregivers because those friends and family members find visits painful.  They are unable to accept the steady changes and the loss of shared memories that they observe in the dementia patient.  They don't want to visit one day and learn they are no longer recognized.  They don't know how to handle the emotional or physical outbursts or the repetition or uncoordinated movements.  It is grief and denial that leads them to walk away and not return.  It is sometimes a fear of their own mortality or a lack of an understanding of the disease.

The dementia patient's caregiver is also shunned.  Their dedication and time commitment to the dementia patient means they are frequently unable to break away for a social jaunt of their own.  Their charges are shunned and in the process, so are the caregivers.

So, how do we break the stigma of dementia?

We educate.  Dementia is not contagious.  It causes us, the observers, grief and confusion.  If I get dementia one day, it won't be a result of spending time with my sister.

We bring dementia into the public discussion.  The more we talk about dementia, the more we normalize it.  Dementia is something people fear.  They fear the loss of their cognitive abilities and we need to discuss that fear.

We share our stories.  We share our funny moments as well as our sad moments.  We look for the ways to laugh, to honor our loved ones and to celebrate our efforts.  Most of all, we just keep talking and telling everyone.  We don't need to romanticize it.  We need to be honest in our assessments of how things are going or what we experience.  Some days are going to be incredibly difficult.  Some will be filled with light.  We need to share both.


Additional Information Sources:
Caregiver Isolation as Cultural Disease
Caregiver and Isolation: Do You Feel Like the Loan Ranger?
Alzheimer's - the problem of stigma
7 Ways Caregivers Can Survive Isolation
Reducing Caregiver Isolation

Tuesday, June 12, 2012

CAD106: A Vaccine

Nearly ten years ago, the first human tests for a vaccine against Alzheimer's Disease were conducted.  They were ended when it was discovered that the vaccine caused the body to attack the brain's own cells instead of protecting them.

Last week, The Lancet Neurology reported that a second set of vaccination trials have been conducted with very different results.  Findings suggest that the vaccine, CAD106, is acceptably safe and causes the body to produce antibodies to amyloid beta.  The study was small, using only 31 patients receiving the vaccine and not the placebo.  CAD106 is a new molecule.  Novartis has provided the funding for the research into it.  While some are hailing this study as a success, the results are not without controversy.  Additional trials are necessary.

Monday, June 11, 2012

Towels

As I was doing laundry yesterday, I pulled a load of towels out of the dryer.  This simple, weekly chore evoked a strong memory for me.

When we were young, Mom usually did laundry on Saturday afternoons.  If we were in the house watching tv at the time that she pulled a load of towels out of the dryer, there was a very good chance that the person occupying the couch would have the entire toasty load dropped into their lap.  Mom didn't care who was sitting there.  Each of us got hot towels on us at one time or another.  Each of us also responded in much the same way.  We'd snuggle in a little deeper, inhale the clean scent and usually smile.


Mom wasn't asking us to fold the towels though that sometimes happened too.  (We were kids and were lazy when we could get away with it, after all.)  Mom was getting the towels to the couch where they would be folded and in the process finding a way to say "I love you" at the same time.

I think it is safe to say that we all loved this simple act; even Lyn.

Sunday, June 10, 2012

Better Scores with Less Competition

On Thursday, Lyn had her weekly practice for bowling with Special Olympics.  Her pattern of flagging scores was evident as was her interpersonal conflict and agitation at being in with all the other athletes.


The next day, she returned to the bowling alley with the staff from day hab.  The bowling alley had about 1/3 less people in it the day before.  It also had none of the regulars from Special Olympics.  Lyn's scores were dramatically different.  

  
The day hab staff report that Lyn was more calm and focused.  She was not agitated and she enjoyed herself tremendously. 

I know Mom has suggested to Lyn that she consider just bowling with day hab each week for fun instead of bowling for Special Olympics.  I hope Lyn seriously considers it.  Mom can point out how much more fun she had on Friday than she did on Thursday.  She wouldn't be getting frustrated with the other athletes and could just focus on what she was doing.

Bowling for Lyn really isn't about getting the highest scores.  Yes, she has been historically been competitive and has won numerous medals and ribbons for it.  However, it has also been a highly social activity for her.  Given her interpersonal challenges of late because of the dementia, it may be time to step away from the competitive aspect and continue bowling for the social and pleasure aspects alone.

Friday, June 8, 2012

Worried

Lyn is agitated.  The smoke from all the fires in New Mexico is really starting to wear on her.  On Wednesday night's news, they told of a new fire between Cochiti & Santa Fe.  That make 8 fires currently burning in NM.  Mom writes:


"Lyn asked where Cochiti was.  I told her but said it was far enough from Albuquerque that we didn't have to worry.  She fixated on it all evening.,  About 7:30 she was looking out the patio door and said that the fire was headed this way.  I got up to look and could see 2 large columns of smoke.  I said that it was nothing but clouds and she began to point out differences between the clouds near the mountains and the smoke.  I tried to assure her that even tho we could see the smoke, the fire was a long way away and would not come this way.  She must have looked to the north a dozen times over the next hour.  She was tired but didn't want to go to bed till about 5 min ago (11:30pm).  She made me promise to watch the news and let her know in the morning."


The wind has brought the smoke from the Baldy fire into Albuquerque.  It has been hanging there for days now.  The fire is the biggest in New Mexico's history and is hardly contained.  The terrain is so rugged, the winds so high and the humidity so low that containment is incredibly difficult.  The air tastes of ash some days and health warnings have been issued because of it.  Mom continues:


"This morning there was so much smoke I couldn't see the mountains but could see 6 balloons.  As I came down the hall after waking her, I looked up and called her to 'Come see what's right here.'  A balloon landed in the field catty-corner from here.  I took a picture.  Poor Nikka all but climbed into Lyn's lap, but never barked.  Someone got out of the gondola and another got in.  They lifted off and flew right over us.  It was the one with multi colored stipes."


Despite the pall from the smoke, the balloonists are still out there and are visible even if the mountains are hidden.  

Thursday, June 7, 2012

Interesting Science

It frequently amazes me what interesting findings scientists announce.  This week is no exception.

Alzheimer's Protein Structure Suggests New Treatment Directions
One of the proteins involved in Alzheimer's actually binds to cholesterol.  This may explain the previously noted correlation between high cholesterol and a risk for Alzheimer's.   This finding suggests that a drug which could cross the blood brain barrier and block the protein from binding to cholesterol may aid in the treatment of Alzheimer's.

How the World's First Drug for Amyloid Disease Works
Amyloids are insoluble fibrous protein clumps which are the result of proteins which do not fold properly.  Alzheimer's is an amyloid disease because it involves clumps of the Beta Amyloid protein.  A drug has been found that prevents the clumps from forming which slows the progression of an amyloid disease.  While it is not treating Alzheimer's, it may prove to be a model for developing other treatments for the various amyloid diseases.

Two Radioactive Tracers Detect Amyloid, May Aid in AD Diagnosis
Two molecular imaging agents are able to detect Beta Amyloid clumps, making them visible to PET scans of living patients.  This finding is particularly interesting because Alzheimer's is not official until an autopsy is performed and the clumps are found in the deceased's brain.  If a scan could be done on a living patient which identified these hallmarks of Alzheimer's, doctors wouldn't have to guess as much as they sometimes do when dealing with dementia patients.

Wednesday, June 6, 2012

HRC Meeting

The Human Rights Committee (HRC) for my sister met yesterday.  The meeting lasted a brief 45 minutes.  The Committee consists of Lyn's case manager, the service coordinator, the agency nurse, the agency Quality Assurance, the individual from the agency who reads all medical reports each month and Mom.

Mom writes:

"The purpose of the committee is to oversee that Lyn's rights are never violated.  This step is required by the DD Waiver because Lyn's had a controlled substance prescribed for the Sundowner's.  With the letter from the physician's assistant, it's understood it will be used only as needed.  The committee was impressed that June 1 was the first time it was used.  I was complimented three times on "being a great mother" because Lyn knows what the prescription is to be used for and that I don't use it often.  


They noted that I have the baby monitor and that Lyn isn't opposed to it being used.  The baby monitor provides only an audio feed.  If it provided a visual feed, it would not have been acceptable.  They also noted, for future reference, that when the time comes that she may begin to wander I am going to install alarms on the top of the doors.  Everyone agreed that any of this is done for safety and no other reason.  These measures are considered to be acceptable and not a violation of Lyn's rights. 

It was agreed that there is no need to meet except once a yr for the ISP.  If there are major changes any one of us can call a meeting.

I felt better when we were done because it wasn't what I expected.  At no time was I asked to sign over any of my rights or care of Lyn.  The committee had no problem of this info being used on the blog because no name of individuals or agency is used.  I explained what you do with the blog.  The case manager was aware of the blog and complimented what she has read as well.  

Hope this makes sense and clarifies what the HRC role is in Lyn's life and care."

I spoke with Mom after reading her email.  She was very relieved with how the meeting went.  She was unsure of what to expect and was prepared to have to defend her decisions.  She's happy to know that the measures being put in place to provide for Lyn's safety such as the baby monitor or the possible use of door alarms were acceptable.  

I appreciate that the committee also felt that I could know their findings and have agreed to allow us to discuss it here.  This summary may serve other families if they are ever faced with this HRC provision in the DD Waiver or any other similar program.  The committee's decision was made because of the measures we take in not identifying individuals by their real name.  

Tuesday, June 5, 2012

ISP Review

Yesterday, Lyn participated in the annual review of her Individual Service Plan (ISP).

Lyn's ISP year is from August 27 to August 26 of the following year.  Budgeting for the ISP is based off the rating of the client which results from the assessments that are done to determine the client's needs.  If you remember, Lyn was recently classified as a "B" level.  This kicks into effect on October 1.  Because of this change and the request for Lyn's reassessment, the budgeting can only be put into place to cover from August 27 to September 30.

The States does not currently know when they will reassess Lyn.  They will do it but it has not been scheduled yet.  They hope to have to have it done before October 1 and the impact of budget changes to Lyn's ISP.  In her conversation with the representative from the State, Mom learned that 90% of the requests for re-evaluation are clients who are now classified as a "B."  There appears to be "a glitch causing people to be classified" that way.  Mom also learned that the original notes recorded by the individual who evaluated Lyn a year ago are no longer part of Lyn's assessment.  The notes included concerns about the changes of Lyn at that time and noted the pending appointment for an evaluation of what was suspected dementia at that time.

Mom states that she got lost in hearing "the changes that have occurred this year" so many times during the ISP.  It was a bit overwhelming to her.  It is one thing to note a change one day or to document it in the blog another  and a different emotional reaction to hear all the changes itemized and verbalized in the course of a one hour meeting.  Fortunately, the notes that were taken by Lyn's case manager will be sent to Mom within a few days.  Mom did note that Lyn's diagnosis has been changed on the ISP to list the early onset dementia before the intellectual disability as a way to highlight it for the reassessment.

Up next for Lyn is the first meeting of her Human Rights Committee.

Monday, June 4, 2012

In a Snit

Lyn has been in a bit of a snit for the majority of the past week.  Mom says that your guess is as good as mine as to why she's being grumpy.  It is not PMS and it is not fatigue associated with being on her period.  In all honesty, it may just be the dementia itself.


On Friday, Mom reached over to touch Lyn's hair to help her straighten it before they headed out to day hab.  Lyn pushed Mom's hand away and grumbled at her.  It wasn't until Mom went to the garage and started the car that Lyn got up and ran a brush through her hair, making Mom wait until she came out to the car.

In yesterday's Skype session, she was a bit mad at my husband for having a minor accident in our garage and needing four stitches.  The Look she shot was more intense and withering than normal.  A few minutes later, she decided to lecture me on how the airlines would allow me to send my five year old unaccompanied.  She wouldn't let the topic go even when Mom and I both assured her that we knew she was right.  We ended up having to explain that even if the airlines say it is OK, I don't believe my child is ready to fly without a parent.  She settled down when we pointed out that accompanying my child also allowed me to see her.

She's so quick to get angry right now.  We're thankful that she is not exhibiting violence as one of her symptoms as some dementia patients do.  I hope she never does.  There are days I can hear the fatigue in Mom's voice and I'll call her just to check up on her; not Lyn.  Lyn will behave as the disease dictates and changes in her behavior are a result of the disease.  There is nothing I can do to stop that.  I can, however, continue making sure that Mom is OK and that she has someone to vent to or someone to laugh with.  Sometimes, I find a little success to share with her even if I spoke to her earlier in the evening.  It is my hope that the little moments help mitigate all the stress and grumpiness she has to deal with the rest of the day.

Sunday, June 3, 2012

Swimming and Bowling

Lyn used to swim with Special Olympics.  We also used to swim in our neighborhood pool as kids.  Until earlier in the week, it had been several years since Lyn went swimming.  One of her activities this weeks at day hab was to go swimming.  She had a good time and enjoyed herself.  However, she didn't know how to swim.  She has forgotten.  I'm sure, if she didn't have dementia, she would have been able to swim even though it had been a long time.  The muscle memory for swimming is gone though.

Her bowling scores are down this week.  Mom says she was struggling with the distractions provided by the bowlers.  Apparently, she's having more interpersonal conflicts with them.  Mom has suggested that she consider just bowling for fun and not bowling for competition any longer.  Lyn has not decided to do that yet.



Saturday, June 2, 2012

A Predictive Story?

The Henley's story is one in which Early Onset Alzheimer's plays a dramatic role.  Mike, the father, was diagnosed with it 10 years ago, at the age of 36.  His mother and brother also died of it because they had the familial type.  Mike passed away early this year.  Through out his decline, his wife worked to bring attention to the disease, care for their children, and work full-time in addition to being his primary care provider.

All of Karen's posts are on Maria Shriver's site.

It is not an easy story to read, but it is worth it.  I wonder if it serves as a predictive story for what we will witness with Lyn.  Only time will tell.

Additional Information Sources:
BBC News - Early-Onset Alzheimer's Strikes Families Fast and Ferociously

Friday, June 1, 2012

Medal of Freedom

Pat Summitt received the Medal of Freedom from President Obama this week.  The Medal of Freedom is the highest civilian honor awarded in the United States.  She is being recognized because of her outstanding leadership.  She will also be awarded the Arthur Ashe Courage Award later this year because of the courage she displayed in her final year of coaching after her diagnosis with early onset dementia.

Congratulations to Coach Summitt.