Monday, September 30, 2013

Summer Bowling 2013

Summer is at a close and fall has arrived.  The nights are cool and the days are still warm.  While this summer was pretty busy for our two households, Lyn continued with bowling, only missing a week or two recently.

Her scores are still all over the map.  However, we have noticed that she has a two game a day limit now.  If she bowls as a day hab activity before she goes to her Thursday Special Olympics practice, her practice scores are down significantly.

Lyn's good days and bad days are pretty evident from the moment she gets up.  Even if she's not having a good day, she's still competitive and hates for anyone around her to get a better score.  She'll clap for them, but you can see her get mad.  Honestly, I am glad to see that the Alzheimer's is not yet dulling her competitive streak because it helps push her a bit.

Friday, September 27, 2013

Suggestions Smooth Sticky Situations

Last weekend, Lyn and Mom went shopping for a new bed for Lyn.  Her bed was old and the wheels on the metal frame had finally broken.  Yesterday morning, the new bed was delivered.

Lyn was very excited until the delivery men pulled the bed out of the truck and began to unpack the pieces.  She knew the bed she had picked out was off-white.  The one being unpacked was cherry.  She started to get upset.  "That's not the bed I bought!"  The delivery men stopped and looked between Mom and Lyn to figure out how the scene was going to play out.

Mom quickly intervened and started talking about how beautiful the new bed is and that cherry would work perfectly in Lyn's room.  She'd had enough advance warning of the delivery that she had already taken down Lyn's old bed.  It was broken to begin with so putting it back together was not really feasible.  So, to avoid a potential problem, Mom started talking about the positive points of the bed right in front of them.

Lyn wasn't 100% sure but started touching the wood and examining it.  Mom continued to talk about how pretty cherry wood is and that it was better than the white one they had originally selected.  The delivery men waited a few moments to see if the bed was accepted or if they would have to load it back on the truck.  When Lyn started parroting Mom's comments about how pretty it is, they relaxed and continued with the unpacking.

In short order, Lyn's new bed was in the house and set up.  Between that and the new oxygen condenser, she's very happy.

Thursday, September 26, 2013

Sending a Little Love

Today, I want to share a little love with you.  Yes, you.  All of you.

I love that you read and are checking in on Lyn through Dementia be Damned.  I love when folks I know in real life comment on something they read here and catch me unsuspecting.  I love when you comment here or on my personal FB page.

So, to share a bit of the love I'm feeling, I would like to share with you a video from Soul Pancake titled "What does Love look like to YOU?"

To me, love looks like you.

Wednesday, September 25, 2013

Quality Care

I am constantly reminded how fortunate I am to have Mom watching out for my sister's best interests.

Yesterday, Mom received an explanation of benefits (EOB) from Medicare which shows the use of the oxygen condenser has been denied coverage for Lyn.  Medicare has deemed the equipment to not be medically necessary for Lyn because she has not undergone a sleep study and the oxymetry tests, while indicating dangerously low oxygen levels when sleeping do not meet Medicare's criteria for medical necessity.  The provider of the oxygen condenser had contested this ruling months ago and Medicare's EOB is their final ruling of that appeal.

Here's how the logic essentially goes.

  1. To determine if Lyn needs nighttime breathing support, she must under go a sleep study.  
  2. The doctor who oversees the sleep study requires that the sleep study be conducted in a sleep lab.
  3. Lyn gets extremely anxious outside her home environment at night and has refused to cooperate.
  4. Anxiety meds would calm her.
  5. The sleep study cannot be conducted while she's on the anxiety meds because they need to monitor her breathing when she's unmedicated.
  6. Mom's presence helps calm her.
  7. Mom would not be allowed near enough to touch Lyn during the sleep study because the contact would throw off the readings of the sensors.
  8. The doctor will not authorize a mobile sleep study because the readings are not considered good enough.  Therefore, no sleep study.  Therefore, Medicare refuses to cover the equipment despite all the documentation requested and received in support of the equipment.  
Oxymetry tests indicate a blood oxygen level drop into the 30s during sleep.  As a result of the above, Lyn's primary care physician ordered the oxygen condenser to provide her with the breathing support she needs.  Without the sleep study, she's unable to receive a CPAP device.

So, now Medicare has denied the claim for the condenser and without coverage the unit currently in their home will be removed shortly.  This is where Mom steps in.  She knows that Medicare has denied, been challenged and denied again.  She knows the coverage will continue to be denied unless Lyn submits to a sleep study.  Lyn continues to refuse to cooperate.  So... Mom did a bit of detective work and learned that she can purchase an oxygen condenser as long as she has a doctor's script for the device.  The purchase is out of pocket and will not be submitted to Medicare.

Mom's got an appointment with the doctor tomorrow already scheduled and plans to walk out with the script in hand.  She's made arrangements for the purchase and should have a new device by the end of the day.  The goal is to have it in place before the current device is removed.  Because of her rapid action, Lyn should have the continuous nighttime breathing support that she needs.

That's quality care.

Tuesday, September 24, 2013

A Conundrum in Early Detection

The ability to detect Alzheimer's earlier has advanced quite a bit since we started this blog in 2011.  Now, individuals who are just starting to suspect something may be wrong have a better chance for an earlier diagnosis as a result of such techniques as using a PET scan to identify tau clusters in the brain.  A chemical which binds to the tau and makes them visible to the scans is given to the patient, allowing doctors to identify Alzheimer's signatures in living patients.  The same type of scan can be done with a chemical which binds to beta amyloid.

Screening programs which include cognitive evaluations are being actively debated because of the recognition that the number of cases of Alzheimer's will increase in the coming years.  The goal is to identify individuals before they are symptomatic in the hopes that early intervention with medication will slow the progression of the disease.  Unfortunately, there is no clear evidence to date that early intervention actually works to slow the disease.  We do know, however, that there remains no cure and we have yet to find a real preventative course as well.

Aside from the grim prognosis, there's another issue with early detection; misdiagnosis.  We often forget that individuals can have clumps of beta amyloid in their brain while remaining asymptomatic of Alzheimer's.  They never develop the forgetfulness or cognitive decline in skills which accompany the disease.  Even individuals with mild cognitive impairment may progress no further into Alzheimer's.

So, if you have such a person and you tell them they have an incurable, devastating disease, what harm is done to that person?  How will this impact their job or their familial or social relations?  Will their diagnosis lead to social isolation even as they remain fully functioning?  Will all subsequent life and medical decisions be impacted by a diagnosis of potential Alzheimer's even if the patient remains asymptomatic?

I don't have answers to these questions.  However, I do believe that it is a decision each person should make in careful consideration with their physicians.

Monday, September 23, 2013

PBR Love

Yesterday, Lyn was faced with a challenging choice.  Should she talk with me on Skype or should she watch the bulls on PBR?  I told her that if she wanted to watch the bulls, I would not be upset.  I know she loves watching them.

She pulled up a chair and positioned herself where she could do both.  She chatted with me between bulls being let out of their shoots into the arena.  When a bull was trying to throw a rider, she'd turn away from the computer and lean towards the television.  Finally, she couldn't stand it any longer.  She had to go back to watching the bulls full time.

As she stood up, I realized that she had deliberately selected her shirt for the day and I had to laugh.

She was very happy to stop long enough for me to get a screenshot of her shirt.  Some people have shirts for their favorite football or baseball teams.  Lyn has bull riding shirts and she wears them when she knows the PBR will be available for her to watch.

Lyn went into the next room and watched the bull riding as Mom and I continued talking.  We could hear her clapping and yelling at the riders.  I'm not sure if she's cheering for the bulls or the riders more. At one point, she called out "I love PBR!"  Mom and I started giggling.  My husband looked up from his reading and chuckled.  She did it again in a singsong voice.  "I love PBR!"

My husband asked if I was recording the moment.  I couldn't figure out fast enough how to record the Skype session and the moment passed as we laughed.

Friday, September 20, 2013


Yesterday, when Lyn and Mom were on the way to day hab, Lyn spotted a big coyote trotting along in a field by the road.  He was bigger than Nikka.  Lyn says he was brown and gray.

This event caused Mom to remember a time when they were on the plane, ready to taxi down the runway to take off for a flight to Virginia to visit us.  The plane was delayed by two coyotes running down the length of the runway.  Airport personnel were trying to shoo them away but the coyotes knew the routine and had clearly played that game before.

I could hear Mom in the background prompting Lyn to tell me that the coyote was on the Air Force base's property.  When Lyn told me that, I asked if the coyote had permission to be on base property.  "Yes!  He did have permission!"  Apparently, the coyote has clearance.

Thursday, September 19, 2013

Stories of Others with Early On-Set Alzheimer's

Today, I would like to share with you the stories of others with early on-set Alzheimer's.  While early on-set is rare, it is good to know that others are living this journey as well.

Tuesday, September 17, 2013

She Really Interests Me

There are days when Lyn is sharp and with it.  Yesterday was one of those days.

She woke up happy and worked with her speech therapist well.  Day hab was closed for in-service training and so Mom and Lyn went out to breakfast with their lovely neighbor.  Lyn picked Tim's Place.  When they were done, Mom suggested they go one way to get to Target and Lyn suggested a different Target location.  Lyn's suggestion was closer and easy to find.  She knew exactly where she was and where she wanted to go.

Two weeks ago, she had a bit of a sharp day.  Mom and I were talking around a subject that we knew had the potential to upset Lyn.  Lyn was not going anywhere and insisted on sitting through the full conversation.  Mom and I were talking about some genealogical research she had recently conducted which turned up a different spelling of my paternal grandmother's name than she had previously known.  As a result, she was debating if she should send the information to my father since it pertains to his family.  Any discussion of him upsets Lyn and we were being very careful to not say his name or his relationship to us.  We were talking about my paternal grandmother's family and referring to them just by first name.

Lyn connected the dots and got upset.  She was adamant that she didn't want to see him under any circumstances.  Mom and I stopped our conversation and assured her that there was no risk of encountering our father since he lives several states away.  We promised her that we know her wishes and respect them.  We will keep him away from her because that is what SHE wants.  We told her that Mom was thinking of telling him information about his mother; not about Lyn and that sharing information was a nice thing to do.  We also let her know that giving him information about his mother did not include any information about her and it did not invite him to see or speak with her.  While she did accept our statements, she cried.  She cries daily now.

It always amazes me when she's making connections that we sometimes think are lost.  These days of engagement seemingly come out of nowhere and can disappear the next day.  It is one of the most confusing things about Alzheimer's.  How can the brain be so functional one day and so lost the next?  What causes the neurons to fire away like they once did?

Monday, September 16, 2013

Pie Cancelled

Mom did end up changing their weekend plans.  Lyn was disappointed but relieved.  The change was not due to Lyn's best efforts.  It was a result of the weather.

New Mexico has been receiving more rain this week than it has in a year; nearly any year really.  Nationally, you may have heard about the flooding in Colorado.  That's an incomplete picture of what is happening out West as New Mexico has been receiving daily rain and is also flooding.  Along with the rain the state is receiving, a portion of Colorado's water is flowing south through New Mexico adding to the mix.

Friday night, the forecast for Pie Town and surrounds changed to include rain.  Mom checked on-line and saw that travel was not recommended.  She called the State Police and they advised to only travel out to Pie Town if it was an emergency.  That was more than enough for Mom to decide that they would stay home.  Albuquerque itself was under a flood watch and many of the arroyos were running full.  The Rio Grande did not burst its banks but did come close.

We don't know if Pie Town cancelled the festival.  However, weather conditions and assorted advisories surely kept visitors away.  Hopefully, next year, the festival will go off without a hitch and Mom and Lyn can attend.

Friday, September 13, 2013

Trying to Change Plans

Tomorrow is the annual Pie Town Festival and Lyn is trying to get Mom to change the plans.  She's worried that the drive will be too long and that they'll be out too late.  She is not impressed that they will be able to see antelope along the way, that their neighbor will join them or that they will pass the VLA.  She's decided that she's just not interested.

Every time she mentions not going, Mom mentions what they can find to eat.  She mentions another type of pie and talks about something else they may see.  The list of pies may run out before they get there, but Mom can make up a flavor.

Have a slice of chocolate chess pie for me when you're there!

Thursday, September 12, 2013


A week ago, Lyn's respite provider forgot her.

The provider forgot to pick Lyn up last Thursday afternoon to take her to bowling practice for Special Olympics.  This is part of both Lyn's and the respite provider's weekly routine; bowling and dinner.  Lyn was beside herself thinking that she had done something wrong to cause the provider to be a no-show.  After waiting 30 minutes, Lyn was in tears and the ladies at day hab worked to calm her down as they called Mom.  Mom arrived within 15 minutes to pick Lyn up.  It was too late and Lyn was too upset to even attempt to go to the bowling alley.

Mom suggested they go out to dinner together as Plan B.  "I always have a Plan B.  She agreed and we headed home.  On the way home she vented, repeating everything about 3 times.  As she went over everything some facts changed.  I tried to correct her but she wasn't listening.  I thought it didn't matter and I let her vent.  Halfway home the provider called and said she didn't know what happened.  She forgot.  At least there wasn't any type of family emergency.  I thanked her for calling, said I was in traffic & couldn't talk."  

This was the last straw with this respite provider.  Over the past few months, as Lyn's needs for assistance have been increasing, the respite provider has not been engaging and Lyn comes home angry and frustrated.  Each Saturday, Mom has had to look up ideas of things that Lyn and the respite provider can do together such as going to the Indian Cultural Center for the dances or going to a play.  The respite provider has instead just been taking Lyn to Old Town "because she likes it there."  When Lyn asks for assistance in steadying herself to sit or stand, walk down a ramp or step off a curb, the respite provider has been telling her "oh, you can do it yourself."  Lyn's unsteadiness was noticeable enough that a train employee intervened to help her down when her respite provider refused.  When they go to dinner, the respite provider has stopped helping Lyn review the menu and has told her to "just get a hamburger because that's what you always get" before pulling out a crossword puzzle to work on until Lyn's ready to go.  The respite provider has checked out and is just punching a clock.

Mom writes: "I know Alzheimer's causes any situation to become "twisted" when she relays it back to me.  I know Alzheimer's causes her to be more sensitive and perhaps misinterpret facts.  However, there is a basis for what she tells me and I have to believe her."

The respite provider was the main topic of conversation in the monthly meeting with Lyn's case managers on Tuesday.  Lyn has had a week of stewing on it and was ready to go.  Mom sat back, crossed her arms and said nothing because she's learned that there's no point in engaging with Lyn when she's in a confrontational mood.  When Lyn had her say, Mom let the case managers know it was time to find a more sensitive provider who can adjust with Lyn as Lyn's needs continue to change.

Wednesday, September 11, 2013

Legislating Care

Can you write, pass and enforce a law that stipulates that families provide for the care of an elderly or disabled member of the family?  What would that care include?  Would it mean providing in-home care, paying for a nursing home?  Would it mean visiting or providing social interactions with the individual?  These questions may seem startling.  Perhaps you are saying "Of course!  The government should protect the elderly and guarantee they are properly cared for."  Perhaps you feel the government should not require one person to care for another.  There could be a whole spectrum of responses between those two positions.

It turns out that a number of states in the US and a number of countries around the world have passed laws addressing the need for the care of the elderly or disabled.  China, for example, has passed a law requiring adult children to visit their elderly parents and a woman has been required to visit her mother more as a result.  Alternately, France has taken a different approach by supporting the care givers and providing respite care and in-home services, particularly for families caring for individuals with Alzheimer's.

For the most part, the laws surrounding elder care or care of the disabled do not specifically identify Alzheimer's or other forms of dementia.  A study which evaluated the laws in the European countries, found brought this to light even as it identified the laws of each participant country.  The countries are listed on the right and it is worth taking a peak into their individual summaries.

The US has elder care laws that are focused estate planning, elder abuse and neglect.  However, as far as I know, neither the Federal government nor the State govements have implemented a law requiring regular visits.

Tuesday, September 10, 2013

King or Queen

The Living Words program in the UK uses literature and arts to work with dementia patients.  One part of the program creates Living Words Word Books for each patient.

The dementia patients are actively listened to and their words recorded.  Their words are then used to write a poem which helps convey a sense of where or who they are at the time the words were recorded.  The poems are placed in the book along with photos and information about the patients which is "non-scientific."

What I find interesting and innovative about this approach is that the books are included in the patients' medical charts. They are there for the doctors and other care staff to reference.  While the medical charts may include information such as blood pressure, prescription list and descriptions of the medical encounters a doctor may have with the patient, the books provide insight into thoughts, personality and the humanness of the patient.

It is this aspect, the humanness, that is so easy to loose sight of when the person is in the last stages of the disease and is no longer able to communicate.  They may not see well, if at all.  They may not speak in a way that is meaningful to us.  They may not be able to control their body.  Nonetheless, they are still human.  They still think and feel.  They can still react to their environment even if it is not in a way we expect or understand.

I was particularly taken by a poem titled "King or Queen."  I am including it below with permission from Living Words.  (Thank you, most kindly.)

King or Queen

It's called 'Patient Condition'
You must not just say
'Good morning', 'Goodbye'
It minimizes the relationship
Try and appraise, interest
Tenderness, consciousness, confidence
The fact you are sharing with them
Uplift the feeling
'Feel better already',
Make us feel human
Not just a dummy.
Pretend you have all the time
In the world
We will feel like King or Queen

     King or Queen is copyright of Living Words.
     Living Words website
     Living Words on Facebook

Monday, September 9, 2013

Joy in Alzheimer's

I took a little time this weekend to get my nails done in a deep purple.  While my manicure was underway, the lady next to me commented on the color and asked if I was a bit early for Halloween.  I told her I was going purple or the month for Alzheimer's Awareness.  She tried to make a connection and asked if I was doing this because of a grandparent.  Her jaw dropped when I told her I did this because of my 42 year old sister.    

She quickly became uncomfortable and stammered out an apology which I brushed aside.  She decided her next tactic would be to tell me about how horrible Alzheimer's is and how she felt there was nothing good about it.  I agreed that Alzheimer's is a dreadful disease but that we have a choice in our approach and that joy is an option.  We can find moments of laughter, of connection and satisfaction.  

I told her of an email I received from a reader sharing the story of how her mother added ginger ale and cranberry juice to her morning's oatmeal because she wasn't happy with the flavor.  She ate it all and was happy.  I told her of Lyn's sheer delight in Nikka.  I tried to share a third example but she cut me off saying "It is just horrible that they are out of their minds."  I just smiled and turned back to speak with the manicurist.  

This woman has decided nothing positive can be associated with Alzheimer's.  A shame...  I was able to drop the name of the blog and I hope she looks it up.  In case she does, I present the following links which, to me, all speak of something other than dread or horror of Alzheimer's.

No, the disease is not all light and happiness.  I would never claim that.  

It is a time for learning to look at life a bit differently than we may have before and a time to select how we accompany or support a person as they approach the end of their life.  While the path of the disease differs for each person, the result is always the same.  Knowing that, we have time to enjoy before the end.  We have time to make amends, to forgive past hurts, to show love and practice patience.  That is a privilege that we often overlook.

Friday, September 6, 2013

Pie Town

Mom has talked about visiting Pie Town, NM off and on for some time now, especially after reading Pie Town Woman by Joan Myers.  It is South of Albuquerque and further West of Socorro than even the VLA.  Pie Town has been in existence since the 1920's and earned its name from the cattlemen who stopped by the little store where pies were sold while driving cattle.  Annually, the town holds a pie festival as one of the primary ways to fund the town council and to honor that which lent its name to the place.  This year, Mom suggested to Lyn that they go.

Lyn is excited and has already told me twice that they will be going.  They are going to leave early in the morning so they can arrive as the festival begins.  Mom has committed to Lyn that they will stay long enough to enjoy the event but leave early enough that they'll be home before 4pm.  That will give them plenty of time to peruse the vendors and enjoy some pie.

Thursday, September 5, 2013


September is World Alzheimer's Awareness month.  The blog is going to be purple for the month.

Finding a cure or event a preventative approach for Alzheimer's is going to take more research and research requires funding.  I believe our best hope is to find a way to prevent it; not cure it once it has started.  Until that day comes, there is much we can do to help ease the burden this disease is increasingly having on us all.

Over 5,000,000 Americans have Alzheimer's and that number could triple by 2050.  That means today we have approximately 15,000,000 families which have been touched by Alzheimer's.  However, how many of us discuss Alzheimer's regularly?  It is a common perception that Alzheimer's is something that happens to other families.  There is a perception that Alzheimer's patients are not much more than zombies, the walking undead.  Even our doctors often have misperceptions or a lack of understanding of the disease.

We can change that.

We have to change that.

Programs like Northwestern University's Buddy Program are designed to help change the experiences doctors-in-training have in connection with Alzheimer's by pairing recently diagnosed patients to serve as mentors to the doctors.  We're not all doctors-in-training but we can change the way we discuss the disease with our doctors, friends and family.  By discussing it more and with less fear, we can reduce the stigma.

Additional Information:
NBC's Age of Alzheimer's Series

Wednesday, September 4, 2013

Lyn's Assessment of Living at Home

During the annual assessment with Lyn's case managers, they asked Lyn if she liked living at home, that that home, with Mom.  They asked if she was happy or if she wanted to move to another living situation.  In typical Lyn-style, she responded with 

Love my house!
Love my dog!
Love everyone else!
So, there you go!

She may have Alzheimer's and be intellectually disabled, but she's still able to make herself clear.

Tuesday, September 3, 2013

New Glasses

Lyn's new glasses came in at the end of last week.  She's very happy and is commenting daily on new items that she's able to see clearly.

She has a pair of no-line bifocals in a tortoise shell style frame.  She was excited to show them to me and my family when we spoke over the weekend.  

Looking good, Lyn!

Monday, September 2, 2013

Labor Day 2013

Lyn won't have day hab today because of the holiday.  The long weekends are hard on her.  As a result, Mom and Lyn are planning to go out with their lovely neighbor.  It doesn't matter if they just go to get groceries or have brunch out, any trip in the early part of the day will satisfy Lyn's need to wander.

I am giving myself permission to step away from the computer today on a professional and personal level.  I give you permission too.

In truth, as you read this, I'm probably standing at the stove cooking down and canning buckets of pears from a friend's tree.  There may even be a tub of vanilla ice cream in the freezer.  And maybe... just maybe... there will be too much spiced pear sauce to go into the jars and we'll have to eat it on a scoop of vanilla just like Mom used to do for us with her apple sauce.  None of us ever turned Mom down when she offered this fall treat.

May it be a quiet and restful day.