Thursday, May 31, 2012

Physical Therapy Begins

Lyn started physical therapy yesterday.  She went in with a positive attitude and was excited to be participating.  The therapist told Mom she could wait in the waiting room while she worked with Lyn.  Forty minutes later, they returned.  Lyn was able relay to Mom that they had worked on walking, stretching and a balance beam.  After just that much, she was tired and so they stopped.

For the rest of the day, Lyn was in a particularly bossy mood.  Lyn will not be going to physical therapy this Friday because Mom has her monthly Alzheimer's support group.

Wednesday, May 30, 2012


Blue was a horse that our Uncle owned for many years.

Blue was a gentle horse.  He was a great horse to ride if you were a young.  He was gentle and very responsive to children.  If an adult was on his back, he tended to act up by pulling on the reins or trying to go where he wanted.  Our Uncle had a quarter horse named Tabby who was the exact opposite.

Blue was one of the horses that our Uncle has allowed Lyn to ride over the years.  Lyne's ride with our uncle usually would involve a couple of circles around his property.  Our uncle didn't like to take Lyn out on the trail along the ditch.  I think it was more about his comfort level in protecting her than in her level of comfort on the horse.

Blue was a character who gave many rides to the kids in the family.

Tuesday, May 29, 2012

An Interesting Case

In 2010, an elderly Alzheimer's patient in Wisconsin was committed to a locked psychiatric unit because she could not cooperate with the nursing home staff.  Wisconsin's Chapter 51 allows an individual to be committed against their will under specific conditions in which a person is a threat to him/herself or others AND has a treatable mental illness, developmental disability or drug dependence.  Her commitment to the facility was approved by a judge.  Earlier this month, the Wisconsin Supreme Court ruled that she was improperly committed and could be ordered to a nursing home.

If I am reading the article correctly, this means that the patient in question has remained in the locked psychiatric unit since 2010.  To say that I'm appalled is an understatement.  Her inability to cooperate with the nursing home staff was not a result of a mental illness, developmental disability or drug dependence.  I do not know if she was aggressive or sexually acting out as a result of her Alzheimer's and the article doesn't provide that insight.  However, I would hope that nursing home staff would be properly trained to recognize when a patient needs more specialized care or be able to administer that care.

Monday, May 28, 2012

Other's Stories

I occasionally listen to This American Life, a weekly public radio show.  I enjoy the storytelling and the format.  When I caught this week's episode, I realized I had never checked the archives for anything dementia related.  Today, I bring you those episodes.

This American Life provides both the audio and the transcripts for their stories.  I think the audio is more powerful and more emotional than the transcripts.  Below, you'll find links to both.

Episode 216: Give People What They Want (Transcript) includes the story of weddings staged for Alzheimer's patients as a way to spark participation from the patients.

Episode 269: Someone to Watch Over Me (Transcript) includes the story of a doctor who becomes the patient after a stroke leads to multi-infarct dementia.

Sunday, May 27, 2012

I Need A Hug

When Lyn was about 11, she was really starting to excel with Special Olympics.  She had a Track and Field meet and walked away with a couple of metals.  At least one was gold.  It was only her second or third gold metal at that point.

After the event, we stopped at the grocery story to pick up a few things for the weekend.  One of our cousins was visiting.  She had gone to the meet with us and was going to spend the night.  When we got to the store, Lyn wanted to keep wearing her metals.  Mom gave her permission and into the store we went.

As we walked through the store, her metals knocked against each other, announcing her arrival on each isle.  The other shoppers would stop and make a fuss over Lyn and her metals.  They asked what she had done to earn the metals and then praised her for doing a good job.  Lyn was preening and nearly prancing down the isles.

I got annoyed.  The metals knocking against each other was like bells clanging in my head, getting worse with each isle.  I lost what little patience I had and starting making comments about it, trying to get the sound stopped along with the attention from random strangers.  My comments started making our cousin uncomfortable.  By the fourth time I smarted off, Mom had enough.  She pulled me off to the side and came down to my eye level.  "You listen to me kid..." she began.

She proceeded to tell me that I was not going to be ugly about my sister's accomplishment because it was her accomplishment and may be the only way in which she succeeds in life.  I had the whole world ahead of me and they would cheer me too when my time came.  Mom laid it out in no uncertain terms that my behavior was unacceptable.  I promptly buttoned up.  Our poor cousin was deeply shocked.

I was deeply jealous of the attention paid to my sister and felt it was out of proportion to her achievement. I knew this was not going to be the only time Lyn competed and foresaw a lifetime of participation with Special Olympics.  My achievements would not garner the same attention and would not come early in life.  In both of those points, I was right.  However, Mom was right to stop my attempts to ruin my sister's pride and self worth.  Jealousy is an ugly emotion.

Mom acknowledged that Lyn would continue to get lavish praise for regular Special Olympics events.  Mom also acknowledged that attention was not always going to be equally distributed.  A compromise was found.  In moments when I felt jealous or excluded again, I was to say "I need a hug."  This innocuous statement would let Mom know that I was starting to hurt without causing a negative scene or diminishing my sister in any way.  Our little code phrase was used several times over the years.

Saturday, May 26, 2012

Physical Therapy Evaluation

Lyn had her evaluation with the physical therapist today.  It went very well!  Mom writes:

"We got to the PT office and filled out the papers.  The therapist, an older lady, finally came for her.  I could tell Lyn took an instant like to the physical therapist.  Yea!

I followed them back to the gym and sat in a corner.  She asked Lyn to tell her history.  LOL, Lyn said "I don't know my history."  So, she began asking a few questions.  Lyn kind of answered and then I filled in the blanks.  She had Lyn do different "activities" such as walking, holding one leg up while holding on to a bar, lying down and to raise her leg up.  She couldn't get it too high without it hurting in the calf.  There was some stretching.  The therapist kept saying that Lyn's muscles are tight.  Lyn did her best to do what was asked of her.  The therapist was very patient.
She will see Lyn twice a week for four weeks.  We set it up for Wednesdays and Fridays.  Lyn's excited and I'm glad she is.  The physical therapist said if she can get her muscles to relax it will make a difference.  She will show me what I can do here at home."

I hope the physical therapy sessions continue to be a positive experience for Lyn.  It will be interesting to see if there's a change in her bowling scores as a result of the work they do.

Friday, May 25, 2012


Celebrity may provide many opportunities and open many doors; however, it doesn't protect against dementia, especially Alzheimer's disease.  The list of celebrities who have been directly touched by the disease is increasing.  A number are care providers and several have announced their diagnoses.

Celebrities may have more financial resources available to them to aid in the care of their loved one or in their own care.  However, they are no more prepared than the rest of us when the diagnosis is given.  What they do have though is a louder voice and a larger audience.  They can bring their celebrity to bear and garner more attention to the dementia related diseases or the role of the care giver.

Thursday, May 24, 2012

Checking Myself

Have you ever caught yourself struggling to find a word that you know you know?  Trying to find something you just know you put down someplace obvious?  Trying to remember what it was you were going to do next?  Retracing your steps while looking for something to jog your memory?

I think we all do things like this.  We try to multi-task but our brains are not good at multi-tasking.  Our brains switch from one task getting nearly 100% of our attention to another so quickly and with such agility that we think we're multi-tasking.  Sometimes, I think we're juggling so many things that we forget one and it takes us a minute to re-orient ourselves.

When you have a loved one with early-onset dementia, you start to question these normal and very minor lapses and quietly worry if they're a precursor of things to come.  I find myself asking if I've told someone a story before.  Before Lyn's diagnosis, I would have just repeated the story without wondering if I've told it.  We've got so many stories in us, it is easy to find ourselves repeating them.  I pause a little longer now if I'm searching for a word.  It is not that I don't have a word; I have many.  It is that I'm searching for the right word and I know I know it.  There are times when "ameliorate" really is the right word, for example, and a synonym will not suffice.  Now, when I'm looking for the word and it is not at the tip of my tongue,  my slightly extended pause is a result of me checking my self.  It is a momentary "Am I still OK?"

It may sound silly, but you wonder.  Well, I do.  It is a small voice inside; but right now, it is one of which I'm aware.  I wonder sometimes if I'm going to face dementia and if I have to, am I going to experience it sooner or later.

I look at my family history and see where dementia, probably Alzheimer's disease, was evident in the senior most members of the family in the last few years of their lives.  I look and I see that the majority of the family live long and productive lives with tremendous mental clarity until their 80's or 90's.  These things reassure me.

Then I look at Lyn.  She's my sister, my full sister; not a half sister nor a sister through adoption.  Genetically, we come from the same stock.  Does that mean anything?  Will that have a bearing?  Lyn does not have Down's Syndrome and was, presumably, at the same risk for early on-set dementia as the rest of the general population.  She has it at 41.  What does this mean for me?

Honestly?  Nothing.  My sister's diagnosis really doesn't mean much for my own future.  Lyn had Sundowner's for years before the dementia diagnosis.  I don't have any symptoms of Sundowner's.  I'm perfectly comfortable being out of my environment in the evening.  My mental lapses are normal and can be attributed to all the normal causes; too much multi-tasking, stress, motherhood, a day or two lapse in my thyroid medication or lack of sleep.

In a recent visit to my own physician, I raised the issue.  I briefly explained about Lyn and her diagnosis.  I asked if early on-set dementia was something that my brother and I should be concerned about.  The doctor actually advised against seeing a neurologist or taking any action in connection with being evaluated unless we were specifically symptomatic.  The doctor reasoned that the bad part of dementia is that we wouldn't show indicators unless it was well underway and then what could we do?  Did we want to live our futures always wondering if the evaluation was accurate or if it missed something?  I'm not sure that not having an evaluation won't leave us checking ourselves, however.

Wednesday, May 23, 2012

No Day Hab Yesterday

Mom writes about yesterday:

"She didn't go to day hab today.  The doctor wanted fasting labs and Lyn had a dental appointment mid-morning.  I thought we'll do it all at one time.  Right after Mass we went to the lab.  The phlebotomist who draws her blood is so good.  Lyn doesn't even blink.  She uses a butterfly and gets blood from Lyn's wrist.  (It may be a little unorthodox, but it works for Lyn.)  

We got to dentist's 20 minutes early.  They were running early so we didn't have but a 5 minute wait.  When the tech came out to schedule the next one in September, she mentioned that Lyn was not as cooperative as usual.  She seemed "touchy" while there.  The dentist came out and asked how she was doing.  They are so very nice to her and me. 

I was concerned we would be charged a missed appointment fee if some morning she refused to keep the appointment.  He said "No, we know the situation which cannot be controlled.  It's not like you will forget, different scenario."  Whew.....

Then we went to lunch.  She said you'd be jealous because we went to Tim's Place.  So good.  The waiter said I could get a Kiddie burrito.  I wanted one but not as big as they usually are.  He said "it is a secret" they share.  LOL But I bet I heard 10 times how "My sister will be sorry she couldn't go with us."  She has been asking to stop at Michael's.  So, we did it after lunch.  She wants to do her stitchery again.  I hate doing it.  We stopped and she got 2 forms for place mats.  Right now she's sitting on the couch doing it.  She's making mistakes but there's no one here to point them out."

Lyn's becoming more obstinate.  If she refuses to see the dentist and if Mom is unable to bribe or redirect her, the appointment would have to be cancelled at the last moment.  Mom discussed this with the dentist today.  When I spoke with her in the evening, she expanded upon the topic.  The dentist is advising his staff that short notice cancellations from their dementia patients will not be charged missed appointment fees.  I think it is a great policy and a kindness.

Tuesday, May 22, 2012


Mom writes:
"We're sitting here watching tv when a commercial came on.  I have no idea what it was for.  For a brief moment, it showed a push lawn mower.  Lyn looked over and said "We used to have one."  I said, "Yes, when I was little Grandpa had one.  That's what we used on the side lawn."  Naturally, the hole in my head was showing.  She informed me that she never saw that one.  When we lived in Del Rey (a neighborhood), we had one to cut our grass.  I had totally forgotten that.  LOL She's right.  We did."

When I read this, I got to the point where Lyn said "We used to have one" and thought "Yep" because I immediately thought of the mower she's was remembering.  She was right.  It was very similar to the one pictured above.  I remember being afraid of it because the blades were exposed.  It made a sound that went snick-snick-snick as the blades passed along the back, cutting the grass.  It was heavy and unwieldy.  It may even have been the one Grandpa used on the side lawn.

Our yard wasn't much bigger than the one pictured above.  It was long and narrow.  It seemed to take forever to mow because of how difficult the mower was to use.  I'm sure our desire to do other things also made the lawn care more tedious than it really was.  

Lyn had to help scoop the dog poo.  Our brother had to use the mower.  I had to take the clippers and trim the grass in the chain link fence.  We did have a push edger to trim along the concrete path to the front door.  For the entire time we lived in the Del Ray neighborhood, we had that old push mower.  Finances were tight and the yard was small.  The situation didn't warrant a gas powered or electric mower.

I find it interesting what Lyn remembers and what sparks a memory in her.  

Monday, May 21, 2012

Human Rights Committee

The DD Waiver program requires that a provider agency have a Human Rights Committee (PDF), also known as HRC, to ensure that a client's human rights are protected when certain care conditions have to be put into place.  For example, if a client requires physical restraint, the use of law enforcement or emergency hospitalization during a crisis, the use of psychotropic medication or protective devices, then the HRC is put into place.  Lyn has an Individual Service Plan (ISP) through the DD Waiver program.  As a result, if any of the conditions listed by the HRC policy come into play, a committee is required to oversee her ISP and the necessary interventions.

Lyn's HRC will hold its first meeting on June 5.  It has been determined by the agency supervising her ISP, that Lyn now needs the oversight of an HRC because of the following three reasons.  First, Lyn's doctor has prescribed a medication that is designed to ease her anxiety and instructed Mom to use it if she cannot redirect Lyn after 10 minutes of attempted redirection.  Second, Mom has started using a baby monitor to keep an ear out on Lyn during the night.  Third, Mom has raised the issue of door alarms if Lyn starts wandering at night.

Lyn was diagnosed with Sundowner's more than 15 years ago.  The primary symptom  of Lyn's Sundowner's is the dramatic increase in anxiety she experiences as night falls if she is out of her own environment.  She knows where she is, but it looks and feels very different to her.  As a result, she starts acting out and rapidly dissolves into tears.  Lyn's doctor has prescribed a medication to help ease her anxiety.  Fundamentally, it is changing her mood.  This places the medication in the psychotropic category.

With the dramatic drop in Lyn's nightly blood oxygen a couple of months ago, Mom picked up a baby monitor and set it up in their bedrooms.  Lyn was turning off her oxygen in the night and taking off the cannula.  Because Lyn was not following directions, Mom feared that she would die during the night.  Her oxygen levels were that low and the oxygen was brought in because of the criticality of the situation. Mom and the doctor finally convinced Lyn to keep the oxygen on and the cannula in place.  The baby monitor may fall into the category of a protective device because it is being used in a protective capacity.  Mom has already been advised that the use of the baby monitor will only be approved if it is one that has only an audio feed.  Monitors with a video feed are not allowed because visual surveillance violates a person's right to privacy.

Finally, Mom has broached the topic of door alarms with Lyn's case manager.  If Lyn starts wandering at night, Mom wants an alarm on an exterior door to be activated so that she can get up and redirect Lyn back to bed.  It would be a violation to lock Lyn into her room at night because this is a method of physical or manual restraint.  Doing so would prevent her from accessing the restroom or food and liquid should she need it.  However, the door alarm would not stop Lyn from leaving.  It would just alert someone that an alarmed door has been opened, allowing Mom to respond directly.

All of these interventions and more will be reviewed by the HRC.  I hope to be able to report back on the HRC's decision.  However, they may direct Mom that their findings are not to be shared with me out of concerns for maintaining confidentiality in Lyn's care.

Sunday, May 20, 2012

Scrap Book Pages

Here are a couple of pages from Lyn's scrap book for this Sunday morning.

One of the highlights for Lyn of a trip to visit us a few years ago was hiding Easter eggs for my children.

The other part of the trip which was good enough to land a spot in her book was the trip to Mount Vernon.  I love the attitude she's showing on this page.

Seeing pages like these from her scrap book makes me wonder what makes her choose one picture over another.  The picture of Mount Vernon makes sense to me.  The picture of her by the tree is a different story all together.  The pose and the tree could have been from anywhere and from nearly any day.  What makes it memorable enough in her mind to be included here?  The ticket to the Gristmill and Distillery was one of venues connected to Mount Vernon that we visited on that trip.

Saturday, May 19, 2012


One of the things which has been consistently told to Lyn since she was added to the DD Waiver program is that she has options.  The program gives her options.  For example, she could choose to go to day hab or choose where to go with her respite provider.  They cater to what she wants to do.

Well, she has options with regards to physical therapy.  She has agreed to go to the physical therapy appointment next Friday.  However, because of the concerns that surround the funding for the DD Waiver and her current classification, both Mom and Lyn's case manager have decided to not fund her physical therapy through the DD Waiver program.  It will be covered by Lyn's insurance.

Friday, May 18, 2012


Lyn went to the doctor this week for a 2 month follow up related to the addition of oxygen to her care.  Lyn is still sleeping a minimum of 10 to 12 hours and the physician is concerned.  It was expected that Lyn would go back to sleeping a more normal 8 hours at night.

During the exam, Lyn tried to stand up from where she was seated and couldn't.  The doctor caught the struggle and asked Lyn to just stay where she was while the doctor checked out her heart and lungs.  She commented that she was glad Lyn didn't smoke which elicited The Look from Lyn.  After that, the doctor asked Lyn to stand up and walk over to her.  She had moved to stand by the exam room door.  Lyn again struggled to stand and finally was able to force herself up.  The doctor closely watched her walk before asking Lyn to walk by putting one foot directly in front of the other as she returned to her seat.  Lyn understood the request, took two steps as requested and then switched to a played out gait.

According to the doctor, Lyn's gait has changed too much and there are indications that her leg muscles are starting to atrophy.  Physical therapy has been ordered.  The goal is to try and reduce the rate of muscle atrophy and to help Lyn loose some weight.  The doctor has also requested that a full set of fasting panels be run on Lyn within the month.  It is time to do her annual thyroid function test.  However, the physician wants to make sure there is not another new symptom of which they are unaware.

Mom's supportive of the physical therapy request and will start taking Lyn as soon as the first appointment is scheduled.  She was caught off guard by the muscle atrophy and wondered "What else am I missing?"

The next morning, Lyn asked Mom to wash her hair and Mom realized that Lyn's having difficulty positioning her head over the sink.  In order to rinse Lyn's hair without getting water rolling into her eyes, Mom now has to reposition Lyn's head.  She counted and learned she's only got about a 2 second window before Lyn moves her head back to the awkward position and Mom has to repeat the process.

So, in addition to her weekly bowling, Lyn will now be doing physical therapy.  She will also participate in an exercise class which is going to be starting at day hab.  Hopefully, all the activity will help.

Thursday, May 17, 2012

National Alzheimer's Plan

On Tuesday, May 15, President Obama's administration announced the release of the National Alzheimer's Plan which proposes to find ways of preventing and treating Alzheimer's by 2025.  To describe the plan as ambitious is an understatement.  Please take a few minutes to read about it or to read the plan directly.

As part of the announcement, the government has also rolled out

Wednesday, May 16, 2012

Telling Stories

An article on NPR this week discussed the use of stories to open previously closed lines of communication with dementia patients.  The basic approach is simple.  Show the individual with dementia a picture and ask what is happening or ask what the individual is thinking about when they see the picture.  While the individual with dementia may be unable to access memories directly, this approach may be opening a different avenue in the neural pathways to stimulate the brain.  The advantage to the individual is that there is no wrong answer to the question being posed.  This story telling approach to communication has been brought about through the Time Slips program.

I found the article intriguing because of the simplicity of the approach.  There's no pressure on either the care provider or facilitator offering up a picture and none on the individual.  It opens a conversation and encourages the individual to engage with the activity.

For example, Mom could show Lyn this picture and ask her what the baby is doing.

Lyn - Age 1 month

She can ask who is sitting next to the baby or why the baby is dressed up.  Through a game of question and answer, Mom could encourage Lyn to pretend and to tell the story she sees in this picture.

Lyn is still capable of being engaged in a conversation as long as it is on her terms.  Your conversation with her may involve a high amount of repetition, particularly if she's agitated about something.  Unless she's agitated, however, she quickly trails off the topic.  However, this may prove to be a useful tool in the future.

The picture is of Lyn, aged one month, by the way.

Tuesday, May 15, 2012

Betty Wood

Mom just shared with me a story she read in the November 2011 issue of O Magazine.  She found it in the waiting room of a doctor's office recently.  The story is lovely and touching.  Let me introduce you to Betty Wood as written by her sister Monica Wood.

My Sister, The Best Person I know

Monday, May 14, 2012


At this time of year colleges, universities and high schools in the United States begin the process of ushering their senior students out the door and into the rest of their lives.  Many graduation ceremonies will be held with commencement addresses uttered to students and guests who are really just waiting for a name to be called and diploma awarded.

When Lyn was born, it was quickly evident that she was different from the rest of us.  Mom clued in and had to go through a grieving process for a child who would not meet the goals we hold in our hearts for our children.  A few years later, Lyn was enrolled in a pre-school which started her on a path towards receiving an education tailored to meet her needs.  She wasn't going to master the basics of math or sciences.  She wasn't ever going to diagram a sentence or even understand what the word "gerund" means.  However, she would be given the opportunity to learn as much as she could to the best of her abilities.

Some of the classes provided Lyn with daily living skills such as how to pay for an item, wash her clothes, catch a bus and maintain a job.  Some of her classes placed her in mainstream classrooms.  In those, her main task was not necessarily to learn the material being taught; but to learn to interact with the world around her.  Those classes also provided opportunities for the regular students to learn how to interact with individuals with disabilities.

During my junior year of high school, our family moved to Montana where Lyn and I finished up high school and graduated.  The school system there was not fully prepared to deal with an intellectually disabled student.  In New Mexico, Lyn would have graduated at age 21.  In Montana, the school system was upset that Lyn was over 18 and still in school.  Mom had to fight to keep her in school otherwise they would have graduated her at the end of the year we moved up there.  Lyn would have been 19 and shorted 2 years of education.  The school system ultimately agreed to work with Lyn for only 18 months, splitting the difference.  This resulted in the two of us graduating together.

Lyn was the person right in front of me in the commencement line.  I've always been proud of that fact.

Lyn got to walk for her diploma just like the rest of our graduating class, all 43 of us.  Lyn got to switch her tassel from right to left and wear the robes just like the rest of us.

She was photographed and fussed over.  A graduation cake had her name on it along with mine.  She was excited and proud.

Don't ask.  I don't remember what prompted the synchronized Look.  I just know that this picture cracks me up.

Sunday, May 13, 2012

DD Waiver

New Mexico's DD Waiver program is the program through which Lyn receives her case management, respite care, speech therapy and the funds for her in-home care provider, Mom.  Lyn has been participating in this program for a number of years now.  Just before Lyn's diagnosis of dementia, she was placed in a pilot program in which the skill levels of the participants was evaluated using the Supports Intensity Scale (SIS).

The SIS is an evaluation which results from interviewing the participant and their chosen respondents such as family members, case managers and friends.  The focus is to discuss only positive information such as the participants goals and desires and evaluate the person in light of what it would take for them to function at a societal norm.  In Lyn's case, they wanted to determine what it would take for Lyn to do the tasks that a normally functioning woman of 40 years would be able to accomplish.

During the interview, both Mom and Lyn's case managers spoke with the SIS interviewer indicating that recent and concerning changes had been noted in Lyn and that she was scheduled for evaluation.  They cited as an example her loss of the ability to change radio stations in the car or start the washing machine.

The results from the SIS evaluation conducted a year ago on Lyn were just send to Mom and Lyn's case manager this week.  The scale used is not the one that was described when the evaluation was done.  The results caught everyone off guard.  Lyn has been classified at a B level.   This means that the state and the folks who rated her evaluation believe that Lyn is fully capable of independent living.  This would additionally reduce her speech therapy to 8 hours a year, remove her budget for in-home care and day hab and reduce her respite care provider budget to the bare minimum allowed by program guidelines.

Mom was advised to call the program office and request that Lyn be re-evaluated because of the dementia diagnosis and the documented changes such as loosing recognition of 1/6 of her previously known sight words.  Mom has done so.  This has suspended any changes to Lyn's case management for the moment.

Lyn is not the only client facing such dramatic changes.  An 80+ year old man in the program who requires 24/7 eyes-on care was also classified at B level.  Other in-home care providers, mostly parents, and the case managers are actively advocating for their clients because the changes are grave.  Currently, several are banding together, getting lawyers and seeking court injunctions to prevent the changes from going forward.   Legal action will halt the enforcement of these changes until the cases are resolved.

What would this mean for Lyn?  She's already struggling with her sight words and in her weekly 1 hour speech therapy session.  If this is removed or reduced to the recommended 8 hours annually, I firmly believe her rate of decline and loss of words will increase.  If her budget for in-home care is removed, Mom will immediately have to seek full time employment.  If her budget for day hab is removed, alternate sources of funding would have to be found or Lyn would have to be removed from participation in her program.  Finally, if Lyn's respite care is reduced to the bare minimum, then her ability to attend her social events will be even further compromised.  Lyn cannot be left unattended any longer.  Removing her from day hab and from her respite provider would place 100% of her care squarely on Mom's shoulders without any hope for a break in addition to saddling Mom with 100% of the financial burden for Lyn's care.  Removing Lyn from her activities and participation in her community will degrade the quality of her life and of Mom's life.  This would increase their isolation and, most likely, increase the rate of Lyn's decline.

While I think focusing on a person's goals and dreams is a noble idea, if this is the resulting implementation, then it fails to take into account the reality of the person's abilities.  Even a year ago, Lyn could not have lived independently.  Today, that's not even a pipe dream.

I deeply hope the new evaluation is reflective of Lyn's reality.  What would it take for her to live like a normally functioning 41 year old woman?  It would take more than what support she's receiving currently provides.

Saturday, May 12, 2012

Mad at Cliffs

There's an amusement park in Albuquerque called Cliff's.  It was known as Uncle Cliff's when we were kids.  Yesterday, Lyn got mad at Cliff's.  Here's the story as Mom relayed it to me.

"Lyn woke up on her own at 6:30.  She was so excited that the day hab staff had passes for them to go to (uncle) Cliff's today.  She kept telling me that she didn't need $$ to get in.  

After Mass, we ran back here to pick up our neighbor so she and I could run a couple of errands after dropping Lyn off.  On the way to day hab, she must have told us 5 times that they were going to Cliff's and didn't have to pay to get in.  Then, she announced she would rather go shopping with us.  I told her we really weren't going shopping; just running a couple of errands.  I reminded her that they were going to have fun at Cliff's.  So once again, she told us how the staff had passes.  Our neighbor said it sounded like more fun than running errands.  When she got out, she muttered something about having lots of fun.

Her new respite provider picked her up at day hab about 2:30.  They came home so Lyn could shower and change.  I could tell as she came thru the door that she was upset.  I foolishly asked how her day was.  OMG, her tone was one of pure anger.  Seems they drove over to Cliff's only to find out it wasn't open to the public yet.  She was furious.  I told her to go ahead and get her bath.  Half way down the hall she came back to tell me that it wasn't open to the public yet.  I told her to go bathe.

Her respite provider said she had spent the time coming home all but ranting about the day being bad.  I said I was sorry but that's what happens now.  She didn't understand.  I told her that as the dementia progresses Lyn will obsess more and more like this and we have to do whatever we can to distract.  When they left, I told Lyn to stop talking about it because we can't do anything about today.  If she was going to keep fussing about Cliff's she would just stay home.  She gave me The Look and then an OK.  She went out the door happy."

Friday, May 11, 2012


Our grandfather was involved in Lyn's life.  He didn't always understand what was going on with her, but he tried.  He could be utterly charming when he wanted.  He was a skilled craftsman and a voracious reader.  He could engage with you in conversations about most topics.  He could be cantankerous and sometimes mean.  He didn't always know how to show love in a positive way.  However, I believe he loved his family despite being emotionally hobbled by his own childhood experiences.

Grandpa could always be counted on to attend our milestones.  He was at birthdays and First Communions.  He liked to see our report cards and would offer us a quarter for a report with good grades.  He never bought our arguments that we should get at least a dollar, preferably a dollar for each good grade.

He held Lyn to a different standard than the rest of us.  He was happy to give her attention, to sit with her while she watched tv or to show her that his favorite dog Lucy would sit all day for Lyn to rub.  If Lyn needed redirection or more intense supervision, he would send her in to Grandma if Mom wasn't around.  He didn't like to be tough with Lyn the way he could be with the rest of us.  I don't remember this being a sore spot, either.

Thursday, May 10, 2012


The word "namaste" comes from two Sanskrit words and can be literally translated as "I bow to you."  It may be used in writing or accompanied by a specific hand gesture that conveys both respect as well as the greeting.  It is a form of greeting or valediction which originated from the Indian subcontinent at least 4,000 years ago.  Unlike other forms of greeting such as the handshake or a hug, the namaste is done without physical contact.

The word has been used since 2003 as the name for a program which aims to provide soothing care to late stage dementia patients approaching the end of their lives.  The program advocates that patients are brought into a designated space, a Namaste Room, where they receive the specialized care of the program which involves sensory activities such as  massage, aromas and quiet and calming music or nature sounds.  Attention is paid to preserve the comfort and dignity of the patient receiving the care.  Unlike the salutation after with it is named, the Namaste Care Program, does involve physical contact.

The program was started here in the US.  It has spread abroad and can be found in Australia and the United Kingdom.  It has also been broadened to provide the same palliative care for patients facing the end of their lives due to other diseases such as cancer.

Wednesday, May 9, 2012

In My Face

From the beginning, Lyn was in my face.  When I was a baby, she would spread a blanket on the floor to get right down to where I was.  Sometimes, she would be nose to nose with me.

Mom says that by day four of my life, I was used to it.  I can't imagine our relationship any differently.

Tuesday, May 8, 2012

Protein Production

When the body realizes it is inaccurately producing proteins, it responds by shutting down protein production.  This is one of the mechanisms the body uses to stop the spread of viruses in the body.  If the virus is targeting protein, then halting the production will slow down or stop the spread of the virus.  Typically, this is a short-term problem.

In patients who have a neuro-degenerative disease such as a prion disease or Alzheimer's, the body builds up of proteins which are not correctly made.  The body shuts down the production of proteins but does so for a long time which leads to a reduction of brain cells.  Brain cells which have died are not replaced.

British scientists have announced that a drug which treats this problem is showing favorable results in mice for multiple neuro-degenerative diseases.

Monday, May 7, 2012


Lyn was born about three months pre-mature in Italy in 1971 on a US Army base.  She was not kept in a neonatal unit because there was none.  She was not kept in the hospital more than any newborn from that time.    She was sent home weighing less than 4 1/2 lbs.  She was delicate and sickly.

When she was brought home for the first time, she was greeted by our brother.  He was 14 months old and latched onto her.  He kept hugging her with all his strength while saying "My baby!  My baby!"  Mom had to wedge her hand between them to let Lyn have enough room to just breathe.

Lyn survived her first introduction to a sibling and all the subsequent years of sibling misadventures.

Sunday, May 6, 2012

Four Universities

News announcements about Alzheimer's this week was dominated by the release of studies from four universities.  The studies are all extremely interesting in their own rights.  However, what I see in this week's announcements is a tremendous amount of diversity in what scientists are examining in their quest to come up with a cure for Alzheimer's disease.

A study at Indiana University finds that memantine, a drug frequently prescribed to Alzheimer's patients, seems to help with some behavioral and psychological symptoms despite not reducing the amount of agitation exhibited by the patient.

Researchers at the Mount Sinai School of Medicine released two findings this week.  They have determined how tau impacts the progression of Alzheimer's disease.  They have also developed a polyphenol from grape-seed extract that appears to improve cognition in mice with Alzheimer's.

Scientists at UC Davis have found compounds that disrupt the formation of amyloid in the brain of Alzheimer's patients.  One of the interesting things about their findings is that the compounds in their study are molecules which are small enough to cross the blood-brain barrier.  Most medications for Alzheimer's are made of molecules which are too large to cross the barrier resulting in the medication never getting into the brain where it is needed.

MIT weighs in with a study which finds that stopping overproduction of a particular enzyme in the brain allowed mice with Alzheimer's to access memories which had previously been unavailable due to broken synapses between the neurons in their brains.

Full Disclosure:  One of the institutions listed above has been a client of my current employer.  I found the  news announcements above through my own efforts which are unconnected to my employment.  The thoughts and opinions expressed in Dementia Be Damned are mine unless attributed otherwise.

Saturday, May 5, 2012

Proud of Mom

I'm very proud of Mom and how she's been handling Lyn's dementia.  She's adding resources for her own care in addition to attending Lyn's needs.

She's started attending a support group for care providers of individuals with dementia.  There were about 20 attendees and the facilitator.  Mom was not the only first-time attendee.  She was the youngest.  Several attendees have been coming to the group for years.

The facilitator described dementia and the brain as a movie reel.  At the start of a person's life, there is little on the movie reel.  As the person goes through life, the movie reel gets longer and longer.  When dementia kicks in, the movie deteriorates in reverse.  The newest memories and people on the film are the first to be lost.  The last in the family to come along is the first to be lost.  The newest skill is the first to the lost.  The movie unwinds until the person has no more film, no more memories.

One of the suggestions Mom took away from the support group was to lie to the disease and not the person.  For example, if the individual is in a nursing home and starts asking "When can I go home?" a technique to use is to say "We will discuss going home when the doctor says you are ready."  In other words, don't say "You can't go home."  Instead, blame it on the doctor.

Another suggestion, this from the facilitator, is to not speak about the loved one with dementia around the loved one.  It will confuse them.

Mom says it was very interesting to hear all the different stories.  The scenarios may have had differences, but they were much the same.  While the other attendees were older and their loved ones were their spouses and partners or parents, the stories still resonated with Mom in her care of Lyn.  Mom felt welcome and open to communicating with the other attendees.

She says "When I came out of there I was feeling upbeat.  I'm going back to the next meeting!"

Friday, May 4, 2012

Changing Fast

It looks like Lyn's changing faster than we thought.

This week, her speech therapist ended their session 10 minutes early because of how Lyn was struggling with words.  She could recognize "eat" and could see it in "heat" and "seat."  She could not sound out the additional letters and understand the resulting new words.

It additionally looks like Lyn has started menopause.  Mom catches her fanning herself and suddenly complaining of how hot everything has gotten.  This has been happening even on the cold days.  If menopause has kicked in, it would be a good change in all honesty.  Life without menses would be just a little bit easier for Lyn and Mom.

Even this week's bowling scores are off and she's back to sleeping more.

Thursday, May 3, 2012


I've had this picture sitting on my desktop for months now.  I know I used it in a post earlier this fall, but there's a second story here.

Zeus was our first family dog and our smallest.  He was a sweet little dog who was always happy to play.    He's not really the reason for this post though.

Notice Lyn in the background.  She's sitting on the couch and has pulled her feet up off the ground while I play with Zeus.  As much as she loved our dogs, she was never comfortable really playing with them.  Our theory was that the movement was just too much for her and she wasn't sure what the dog was going to do next.

Despite choosing to sit on the sidelines, Lyn was engaged in the play between us kids and the dogs.  She would watch and laugh.  She would sometimes call out encouragement.  She would not rough house with them at all though.

Our dogs have all responded to Lyn differently than they did to the rest of us.  They quickly learned to not try and engage her in active play.  Instead, they would sit and accept attention, rubs and love from her.  They might rest their heads on her knees or put a paw in her hand.  It was a gentle exchange of affection between them.  It didn't matter if it was one of the dogs that lived in the family home with Lyn or if it was one of mine.  The pattern has been consistent.

Today, Lyn repeats the same gentle approach with Nikka.  She may occasionally toss a ball for the dog, but her preferred method is gentle engagement.  Nikka, unlike the rest of our dogs, doesn't just sit and accept this from Lyn.  She is just as gentle as Lyn but she's a lap dog.  She's silent and subtle but in a few seconds of attention, you'll find she's got you in a hug or that she's suddenly in your lap.  Lyn loves this even more than she loved watching us play in ways she was never comfortable doing.

Wednesday, May 2, 2012

Extreme Love: Dementia

Every once in a while, country specific viewing privileges get in the way.  Case in point, Extreme Love: Dementia is a documentary presented by Louis Theroux, a British broadcaster as part of his Extreme Love series.  From the two articles I have read about the episode, I would very much like to watch it and share it with you.  Instead, I offer up the two articles and 3 dementia related videos I found in searching for this one.  Enjoy.

Louis Theroux on Dementia: The capital of the forgetful
Louis Theroux: Extreme Love - Dementia, BBC Two, review

The Mind 1 - Dealing with Dementia Alzheimer's and Coma
The Mind 2 - Dealing with Dementia and Aging
The Mind 3 - Dementia Alzheimer's and DNA Science

Tuesday, May 1, 2012

Weekly Clothing

I've mentioned previously that Lyn really understands layering clothes.  With the onset of warm weather, you would think that this skill can be relaxed a bit in practice, but you'd be wrong.

During winter months, Lyn wears a tee shirt, a sweatshirt and sweatpants at night.  During the day, she wears two layered shirts and jeans.  Each week, she goes through an average of a dozen pairs of socks and underwear.  She changes both each time she changes her clothes.

Summer is a little bit better.  She will wear one shirt during the daytime.  However, at night, she may add a sweatshirt to her sweat pants and tee shirt nightwear if she feels any sort of a breeze.  To Lyn, a breeze means that it is cold out.  She goes through the same amount of under garments in warm weather as she does during cold weather.  Functionally, this means that Lyn generates three loads of laundry on her own.

Even with the heat the oxygen condenser generates, Lyn's pattern is not changing.