Wednesday, October 28, 2015

Stigma and the Intellectually Disabled

As I think back over Lyn's life, she has experienced the stigma that is often associated with being intellectually disabled.  However, I don't remember it being horrendous.  I can think of some incidents but for the most part, I don't recall it being a daily or pervasive issue.  Perhaps Mom's perspective was different.

I do specifically recall that when we lived in a small town in Montana, Lyn was tolerated by the locals because she was not perceived as a threat to the community.  The term threat is a loaded one here.  We were outsiders and we were not welcomed.  Lyn was tolerated because people assumed that she would never get a job or "take a job from a local."  I did get a job and I was considered a threat.  (Perhaps walking down the street with my pet rat on his leash didn't help.  But that's a different story.)

I encountered an article titled "Is It Possible to End the Stigma of ID/DD?"  It is an interesting article and raised the topic for me.  You could never claim Lyn was lazy or dangerous.  I have, however, seen this claims and this stigma directed to others that Lyn knew from school or Special Olympics.  I have seen people afraid to shake hands or give a hug to someone who is intellectually disabled.  I have seen people who I thought were rational or kind go on a tirade about how individuals with intellectual disabilities are selfish and manipulative.  I even knew one mother (not mine) who would say things like "I guess I have to go pick up the retard (her son) now."  There have been times when I have been aghast at what people say.

That's why I love organizations like Look Cook and Eat, Ruby's Rainbow and Special Olympics which promote knowledge, understanding and positive approaches.  I love reading articles which feature individuals with intellectual disabilities doing what they want to do and being successful.  The more we see, the more we normalize and less stigma remains.

Stigmas be damned!

Tuesday, October 27, 2015

Chastised Again

I try to watch my language depending upon the situation.  At work, I definitely have a persona I try to maintain.  At home it relaxes a bit and I say things of which Lyn doesn't always approve.  One of those slips happened on Sunday while we Skyped.

My eldest was sitting next to me on his own laptop listening into the conversation.  I turned the camera to him and asked him to tell his Grandmother why he was late getting home from school on Thursday.  I knew there would be a smug smile and wanted her to see it.  He explained and we all got a good laugh out of the situation.  Without thinking, I commented that his "life must suck" because he had been invited to spend an hour in the school weight room with the girl's volleyball team.  

Within a few moments, Lyn was chastising me about my choice of language and that we never say these things.  She couldn't quite form her sentences.  The tone and thought being conveyed were familiar enough that I clued into her meaning.  When I scanned back though my memory of the conversation which had just taken place, I realized she was unhappy I had used the word "suck."  

Ah well... being chastised in that moment was worth the exchange with my eldest and my Mom.  I'll stand by my words and let her express her displeasure in my choices.  It didn't help that I was drinking some hard cider when we were talking.  She disapproves of that too.  

Monday, October 26, 2015

High School Reunion

Mom received an invitation to her high school reunion and wanted to attend.  She thought about it and debated her options for being able to go.  She decided to go to the Friday night event and realized she needed to line up care for Lyn.  Lyn would not be able to attend.  It would have been late, with many people and Lyn would have had great difficulty attending.

Mom considered several options and reached out to the Alzheimer's Association in the process.  They recommended that Mom line up the services of a care provider from Comfort Keepers.  While Mom could have asked Lyn's regular respite provider if she could do it, Mom didn't want to ask her to work overtime.  Mom ended up interviewing with Comfort Keepers and decided to enlist their services for the night.

As the date approached, Mom and I had several conversations about her reunion.  I could tell it was important to her.  She wanted to go.  She was also debating with herself.  She would contend that she didn't know what to wear, that it would be easier to stay at home, that it would be costly to have someone come stay with Lyn even for a few hours.  There was fear, doubt and guilt being expressed.  All I could say was supportive words like "I hope you go.  I think you should go.  You'll enjoy yourself.  You need a night off."    

Mom went.  She assures me she had a delightful time.  She was able to reconnect with folks from high school, even encountering an ex-boyfriend.  The exchanges were relaxed.  Her class mates and their spouses were charming.  The tone of her description of her night out include pleasure, relieve and delight.

As for Lyn, she enjoyed herself.  She was at home with Nikka and the staff from Comfort Keepers.  She had one-on-one care and was the center of attention.  They played games.  Lyn was relaxed and happy.

So, for both, the night was a great success!

Thursday, October 22, 2015

Wednesday, October 21, 2015

Time to Switch

It is time to switch to one-on-one care for Lyn.

Last week, she only agreed to go to day hab twice.  She fully refuses to go on any of the day outings.  The commotion of all the clients is too much for her to process.  We know she's transitioning to the next stage of Alzheimer's and it seems like this fall is seeing a lot of changes for her.  Even her behavioral therapist has noted that in the past couple of weeks, Lyn's ability to cope with day hab is greatly diminished and new resources need to be put into place.

While this was discussed at the last team meeting, it was done in terms of "when the time comes..."  Well, the time has come and her behavioral therapist has started that ball rolling.

Tuesday, October 20, 2015

Grow New Brain Cells

Remember the recent post about the hippocampus?  One of the tidbits is that there are two types of cells in the hippocampus and one becomes hyperactive later in life.  Keep that in mind as you watch this Ted Talk titled "You can grow new brain cells.  Here's how."

Now, get up and and get the blood flowing to your brain.

Monday, October 19, 2015

Eye Exam

Lates last week, Lyn had her annual eye exam.  Lyn saw a different ophthalmologist with the practice than who she has previously seen.  He evidently had not read her chart prior to seeing her.

Her prescription has changed very little this year.  The significant change is that she no longer has the ability to tell the relative distance between things. Her depth perception is gone.  The doctor was confused.  He indicated that this would happen normally if a person had crossed eyes or a lazy eye.  She has neither.  Mom asked if this is a result of the Alzheimer's.  The doctor was a very surprised by the question but immediately answered with "Yes!"

The lack of the depth perception isn't a big surprise.  We've seen her struggle to figure out where to put her feet when faced with stairs or a curb.  We just didn't realize it was gone.

Thursday, October 15, 2015

Casual Education

There are times when I think I might be a good teacher.  I can be excited about a topic and want to share what I know about it.  Ask me about dinosaurs or bees and I'm going to assume you are a sponge to soak up all the info I'm about to share.  Ask me about Alzheimer's and I'll do the same thing but with a different tone.

I find a lot of people don't know a lot about Alzheimer's and they are uncomfortable talking about it.  I chalk that up to people being generally uncomfortable discussing terminal diseases, death or disability.  Sometimes, I get the feeling that they assume that I'm uncomfortable and they're afraid they're entering into an emotional minefield.  I assure you I'm completely comfortable discussing Alzheimer's.

It is an interesting dance to watch as people who are not directly impacted by Alzheimer's try to figure out what is safe to ask and what is not safe to ask.  I try to keep the tone of the conversation casual and informative without being a downer.  It is important to let people know that Alzheimer's is terminal and to acknowledge that physical, mental and emotional decline are all part of the disease.  I try to buffer these crucial points with highlights of amusing stories so that there are moments when people can feel safe in smiling or so they can recognize that humor is still part of the equation.

Yesterday's moment of casual education came about as a result of a conversation which started about bees.  I mentioned we have an out yard on the edge of the Potomac River and we want to move to that neighborhood within 5 years.  We like the area and know of several homes with in-law suites.  I was asked why that was import to us and I replied that "when my sister passes, we want my Mom to come live with us but have her own space."  My colleague was floored at the phrase "when my sister passes."  He indicated that he "knew she has Alzheimer's but didn't know she was otherwise ill."  I quickly realized he didn't know that Alzheimer's is terminal.

He didn't realize that Alzheimer's was a progressive or degenerative disease.  He thought that Alzheimer's patients just didn't remember everything anymore but that they pretty much stayed the same after that.  We work for a software firm and I was quickly able to explain that having Alzheimer's is like when the CPU of the computer is starting to fail and you find that the drivers start to fail as well or other portions of the computer stop communicating with each other properly.  With computers, we can swap out components and limp along for a while.  We can reemerge the machine and get a bit of a do-over.  With humans, we cannot.  If our brain is failing and if the brain controls everything else in your body, then the body is failing.

The conversation wasn't upsetting nor a downer.  It was a moment of casual education and my colleague has a little more knowledge today than he did yesterday.


Wednesday, October 14, 2015

Skipping Day Hab

On Sunday, as Mom was tucking Lyn into bed, Lyn asked if she had to go to day hab on Monday.  Mom assured her it was her choice.  She didn't have to go if she didn't want to.  Lyn said "Well, I don't want to go tomorrow."  When Mom asked why, it took several attempts for Lyn to get past saying "all the" repeatedly and finally get out the thought of "all the noise."

Lyn didn't go to day hab the next day.  She stayed at home with Mom and was mostly quiet, spending a large portion of the day coloring.

Mom will ask her each day if she wants to go and will encourage her to go.  There will be days when Lyn doesn't have much choice.  She will have to go so Mom can tend to things like participating in her Alzheimer's support group.

Tuesday, October 13, 2015

Look Cook and Eat

A year ago, I backed a Kickstarter project called Look Cook and Eat.  Look Cook and Eat is an online cooking magazine targeting individuals with intellectual disabilities.  It has been interesting to get updates from them for the past year as they shared their progress with their backers.  Yesterday, I received another update.

I'm happy to learn that they have launched their service.

Congratulations to the staff at Look Cook and Eat!  May you have great success and may your clients delight in the service you are providing.

Monday, October 12, 2015

Balloon Fiesta 2015

The past two weeks have filled the skies over Albuquerque with hundreds of hot air balloons.  The Albuquerque International Balloon Fiesta has been underway and the city is hosting 550 balloons, their pilots and crews.  While smaller than in previous years, the event is not to be missed.

Lyn loves the special shape and there are several new ones this year.  I was just looking through the gallery and spotted a great balloon called "Robbie."  Robbie is a boy in a wheelchair reaching for a star.  I love it!

Lyn has been saying that she wanted to go to the Balloon Fiesta Park with her respite provider this weekend.  Both Mom and the respite provider would have made that happen if they thought Lyn could handled it.  At this point, we don't think she can.  She's gone in previous years, however.

Going to the field is an effort.  You have to get up early and be out the door in enough time to arrive at the field before 4:30am.  You have to go to the Park and Ride area to be shuttled into the field.  You're at the field with as many as 100,000 other guests and hundreds of balloons.  The field is a a hands-on venue.  Guests walk between the balloons and may be pulled from the crowd to lend a hand.  They're encouraged to speak with the pilots and learn about ballooning.  Some balloons, such as Darth Vader and Master Yoda end up having their own crowd control groups.  Those two balloons are supported by a local garrison of the 501st who provide Storm Troopers every day of the fiesta.  The field is ringed with vendors selling everything from balloon pins to burritos.  It is chaos.  It is a calm and beautiful form of chaos but chaos nonetheless.

Mom asked if Lyn wanted to get up at 3am?  No!  Did Lyn want to deal with the Park and Ride shuttle?  No!    Did Lyn want to deal with 100,000 people?  "No!  I can't deal with that!!"

She opted to go bowling instead.

Thursday, October 8, 2015

October's Team Meeting

Tuesday was the monthly team meeting in which the individuals involved in Lyn's care get together to discuss what has happened in the past month, what actions need to be taken and review how Lyn's doing.

Mom mentioned how early Lyn has started going to bed again.  (There are days now when Lyn struggles to be up past 5pm.  Yesterday, she bathed and was in pajamas before 2pm.)  Lyn's behavioral therapist offered up an insightful response:

"Of course, you are tired.  You work so hard and your brain is tired by the end of the day."

Lyn's time at day hab is becoming overwhelming for her.  The staff at day hab keep the music on and up all day.  Lyn's behavioral therapist is scheduled to do some training with the staff there this week and she intends to suggest the music is turned down or even off for part of the day.  She says it is difficult for others to concentrate and the impact on the constant noise is not limited to Lyn.

Mom and the behavioral therapist both think that the time at day hab will be less and less over the next year.  We're already seeing days in which Lyn is asking to stay home or otherwise expressing a desire to not go.  Lyn's case manager informed Mom that when Lyn can no longer attend day hab the funds which pay for the service can be transitioned to paying for 1-on-1 coverage.  This coverage is more expensive and may require additional funds.  When Lyn is no longer able to leave the house, this coverage is a necessity so Mom can still leave the house to tend to everything from grocery shopping to Alzheimer's support group sessions.

Lyn's respite provider was in tears over this discussion.  She doesn't like to acknowledge that Lyn's progressing pretty quickly or that Lyn will be homebound sooner rather than later.

Tuesday, October 6, 2015

The Hippocampus and the Research

The human brain has a hippocampus buried deep in each half.  It helps process short term memory and to navigate through a space.  It is one of the earliest portions of the brain damaged by Alzheimer's.

If the hippocampus is a key component in the creation of memories and moving an experience from short term to long term memory, then damage to the hippocampus will prevent the person from learning and retaining new information and experiences.  Alzheimer's patients how this lack of ability.  The other impact to damage to the hippocampus is that the person can no longer successfully navigate.  Sound familiar?  Going from spot A to spot B is now an unknown even if you've been there a million times before.

We've seen both with Lyn.  She cannot tell me what she did yesterday unless she's prompted.  She does not know the routes between places any longer.  She doesn't know the way to Santa Fe.  She doesn't know the way home.  These factor into her anxieties.

So, where does the research come in?  Researchers at Northwestern University just published a study in the Journal of Neuroscience which indicates one type of cell in the hippocampus can become more active as the brain's owner (in this case rats) ages than another cell.  The more active cell in this study is the CA3 Pyramidal Neuron.  The research is interesting because it suggests that facilitating the increase in CA3 activity while the other cell activity is decreasing is a potential treatment approach.

Monday, October 5, 2015

Winter is Coming

The weather this past week has gone from Summer's hot and humid meltiness to Fall's cold and rainy days.  We have not see the sun in a week but were fortunate to only have a few inches of rain instead of the many inches which were predicted early in the week as we waited for the Noreaster and Hurricane Joaquin.  

It reminded me of the years when we lived in Virginia Beach.  Mom and Lyn would often plan their annual trip out towards this time of year in the hopes of missing the humidity and the worst of Hurricane season.  For the most part, they succeeded.  There was that time that they arrived just before Hurricane Dennis came ashore.  After that, the visits were pushed to later in the year, sometimes approaching Christmas.

So, for me, these Fall days that are drenched in rain and gray are not miserable.  They're a welcome break from the humidity which makes it hard to breathe here in the Summer.  They remind me of good visits with Mom and Lyn, of times visiting the few shops which stay open all year at the Beach, of watching my sister enjoy the waves at the beach even if she wouldn't step into the water.  

Yes, Winter is coming and with it Lyn will retreat more.  But there are still days that are bright and clear and bracing to be enjoyed.

(I have not yet watched Game of Thrones but I have read all of the books.)

Thursday, October 1, 2015

Is Alzheimer's Transmittable?

So, here's a frightening thought;  you go in for surgery and the surgeon uses instruments on you which had previously been used on an Alzheimer's patient. The hospital had sterilized the instruments.  They were not negligent.  You later develop Alzheimer's. Coincidence?

There's a new theory that there could be a form of Alzheimer's which is transmitted from person to person in the manner described above..  This theory is a new one and a highly controversial one.  If true, it would introduce a third type of Alzheimer's. We know there is spontaneous Alzheimer's (it happens and we don't know why) and familial Alzheimer's (it is a result of an inherited gene).  If there is a Transmittable form of Alzheimer's, it would mean that this form of the disease is not the result of a gene but the result of prions.

As I stated, the theory is controversial and government health agencies are coming out to indicate there is no such thing as transmittable Alzheimer's. The finding is from one study which only looked at 8 brains. Much more work and a greater sample set is needed before any of us should worry.