Friday, June 27, 2014

Summer Break

It is that time of year for me to check out and spend some time away from the keyboard.  While I'm away, enjoy the holiday and don't burn anything down as you're lighting your fireworks.  I'd like to return knowing you all are safe and sound.

Dementia Be Damned will return by Tuesday, July 8.

Thursday, June 26, 2014

Feeling Like No One Understands

Lyn is struggling to make herself understood.  She starts and stops her sentences a lot.  On Sunday, she said "Let me put it this way or I can put it this other way..."  After a few more attempts she was able to get out her thoughts.  Mom and I were able to repeat them to her and validate her words.  This is a luxury of communication that we are able to provide her.

At day hab, there are a greater number of  individuals who are trying to speak at once.  The staff may be trying to do more than one thing when they are listening to her.  The environmental stimuli around her may actually be interfering with her ability to hold onto a thought and find the right words to express it.  Patience on both sides of the equation is definitely shorter and she frequently gives up trying to really make her thought clear.  At a result, Lyn increasingly feels as though no one understands her.  This can lead to tears in the middle of the day.

Mom is trying to work with the staff at day hab to help them understand Lyn's increasing communication difficulties.  It is a work in progress.

Wednesday, June 25, 2014

Cool Bath

Some days, Lyn just can't cool off.  She complains of being "hot from the inside" and will ask to take "a cool bath; not a hot one" if she's at home.

A few months ago at her check up, the doc ordered blood work and one of the things they checked was to see if she'd started menopause yet.  At that time, she had not.  However, these moments of being hot from the inside are happening at an increasing rate.  Mom will let the doctor know at Lyn's next check up.

I hope she is menopausal.  I don't wish her to have hot flashes; just an end to menses.  It would make her care just a little easier.

Tuesday, June 24, 2014

Changing Clothes

Rare was the day when we were growing up that you could convince Lyn it was a Pajama Day.  Those days in which we reveled in laying about in our pjs, doing nothing, were not for her.  She wanted to be up and dressed to meet whatever presented itself.  Even if nothing was planned, she was prepared

I've noticed over the past couple of months that unless Lyn has somewhere to go on the agenda for the day, she's not going to change her clothes.  Sundays are typically spent at home now.  Lyn really needs a day to rest and recover from a week of day hab and an activity on Saturday.  As a result, Sundays are now designated as Pajama Days by her.


She has no interest in changing her clothes now and will only do so willingly if she knows she's going out.  This too will change and there will come a time when she'll resist changing clothes at all. 

For now, one Pajama Day a week is workable and helps her stay happy.

Monday, June 23, 2014

Solstice

Lyn's evenings have been great lately and we only just realized that there's been no sign of her Sundowner's.  Mom started to pay attention and realized that Lyn was heading to bed well before the sun starts to set.  It is Summer, after all, and the days are gloriously long.

I know it may seem obvious or just a small revaluation, however, it is important for Mom to be aware of the patterns in Lyn's behavior when they exist.  In this case, the extended sunlight hours mean she's more comfortable and much less anxious.

The Summer Solstice has just passed and now the days will begin to see fewer hours of sunlight as dusk comes earlier and earlier each day.  While several of my friends celebrated the Solstice, at least one marks it as a day of mourning because it is the harbinger of the coming of Winter.  She welcomes the Winter Solstice with joy because it means the days will have an increasing amount of sunlight.  While we don't mark the day one way or the other, I'm sure we'll pay a bit more attention to the length of daylight and Lyn's moods.

This leaves me wondering if care givers typically find Winter a much harder time of year.  Aside from the stressors around the holidays, there's just less light and more raw emotions.  For the Alzheimer's patient, the reduced light adds to their anxiety and confusion.

This Winter with Lyn will be telling.

Friday, June 20, 2014

Scheduling My Day

Yesterday, we talked about the importance of a prepared schedule for Lyn.  Let's stick with that topic for a minute.

My family and I are preparing for our annual week n New Mexico.  We asked Mom if it would be better if we stayed at a hotel to minimize the disruption to Lyn.  Mom insists the disruption is both welcome and worth it.  I figured she'd refuse our offer, but I wanted it out there to let her know that we're willing to do whatever will make the week enjoyable for them.

Lyn is already planning as well.  Each time we speak on Skype, she tells me she's making a list of the things we will do and the places we will go.  Tim's Place is on the list.  El Pinto is on the list.  A trip to Santa Fe to see an exhibit on turquoise is on the list.  I'm not sure what else is on the list.  Each time she thinks of something, she has Mom write it on the list.    Apparently, the list is getting longer than our visit will accommodate.

We are happy to have her make this list for two reasons.  First, it makes her feel useful and that means valued.  The list is her idea and it is letting her feel as though she's providing us with information from which we can benefit.  When she has and idea and we say "Add it to the list", we are validating her desire to help.  Secondly, the list is something she's bought into.  We can convert it to a schedule and she will know what to anticipate in a day.

If that makes the week easier on her, that's fine by us.

Thursday, June 19, 2014

Scheduling Her Day

Lyn's decline seems to have picked up a bit recently.

She definitely struggles to remember the names of people.  If she sees you daily, she has a good chance of getting your name right.  She cannot remember my youngest's name most days any more and she works hard to pull out my eldest's name. Some days, she's not even sure of their gender and just refers to them as "the kids."

As her disease progresses, we're finding that she needs more information about what is scheduled for the day.  She also needs time to process it in a quiet setting.  This need is having an impact on her daily experiences at day hab.  At day hab, she is supposed to have a schedule established for the week.  No day is to be a "roll with it" or a "let's see what happens" or an unstructured day for her because she cannot cope with spontaneity and will become resistant.  The need to know what is going on in advance is so critical for a successful day for Lyn that it has been written into her ISP.

When she has a schedule, she can look at it and Mom or the staff can read it to her.  She is assured that what is written down is what will happen and she can think about the day's activities in advance.  If the day's activity is a friendly bowling game, she'll bring her ball and shoes.  If she has no schedule to refer to, she has no idea what is going to happen.  She won't know that bowling is scheduled and won't bring her ball and shoes.  If she doesn't have them, she refuses to go because she refuses to use rental equipment.  (Totally understandable, really.)  If she has no schedule to refer to, she may be confused when the day's activity is announced.  She may not understand what is about to happen.  The staff may be trying to get everyone ready to go and Lyn may not get the additional explanation or memory prompts she needs.  If this happens, she refuses to go.

Lyn's refusal to go is actually pretty simple to understand when you consider what is happening from her perspective.  She's confused.  She doesn't know where they are going or what they are doing.  She doesn't know when to anticipate being back.  She feels unprepared and out of concern for her own safety, she decides that staying at day hab with one staff member is less risky than venturing out with the group.

This all came to a head earlier this week.  Mom went to pick Lyn up at day hab and one of the staff decided to talk to Mom about how Lyn is not participating in the day's activities.  Mom pointed out the lack of a schedule and how each incident of resistance can be traced very quickly back to the lack of a schedule.  Mom raised the issue with Lyn's team manager who has voiced support for the need of a weekly schedule.  Mom has also reminded the staff at day hab that Lyn's brain is changing and there needs to be understanding and flexibility around Lyn's care.

As of yesterday afternoon, a schedule was written for the rest of the week and a new one for next week will be ready today.

Wednesday, June 18, 2014

Introducing the Social Story

Lyn's speech therapist is introducing a social story into Lyn's therapeutic approach.

Social stories are stories about an event that are designed to help an individual understand what's going to happen and what are appropriate responses in a particular situation.  Social stories can be used to illustrate any event or situation which the individual needs additional preparation to understand.  Sometimes, the situation is easier to understand when it is described in the third person or if there are pictures to go along with it.

When my little one was about to go to the dentist for the first time, we picked up a published story to help introduce what should be anticipated at the dentist.  We actually use social stories fairly often with my child because it really helps.  A similar approach is being introduced with Lyn.

This has become necessary because Lyn has started refusing to allow the dental hygienist to use the ultrasonic scaler.  Lyn will allow the hygienist to use the traditional scaler.  It uses water and vibration to remove the plaque.  It is more effective and easier than the old scalers.  Lyn goes to the dentist every 4 months and cannot remember from one time to the next that the ultrasonic scaler is preferred and won't hurt her.  When she cannot understand a change, she refuses to cooperate with it.

The refusal of the ultrasonic scaler was brought to Mom's attention the first time it happened and again the second time.  Mom mentioned this change to Lyn's speech therapist who immediately suggested the social story.

She's scheduled for her next appointment in a week.  The day before the appointment, Lyn's scheduled with her speech therapist.  The therapist is writing a story about Lyn visiting the dentist and the hygienist using the ultrasonic scaler.  They will review the story in their therapy session and, I believe, Lyn will have the story at hand so she can review it with Mom before they go to the dentist's office.  The hope is that it will normalize the experience and help Lyn feel comfortable enough with knowing what is going to happen that she'll allow the hygienist to use the preferred tool.  The hygienist is familiar with the use of social stories to help patients get through visits and excited to know that one is being used with Lyn.


Tuesday, June 17, 2014

Senate Allocations

On Tuesday, June 10, the Senate's subcommittee on Labor, Health and Human Services allocated $100,000,000 to the BRAIN Initiative, an increase of $60,000,000.  As the Cure Alzheimer's Fund points out, this allocation is not a guarantee that the funding will happen.  It must get past the full Senate's vote and then be reconciled with the House's version of the budget.  It is just one step in the larger process of getting the government funding in place.

Monday, June 16, 2014

Changing Contexts

Yesterday was Father's Day here in the US.  Yesterday was also our regularly scheduled Skype conversation.  Lyn was quick to follow Mom's lead in wishing my husband a Happy Father's Day.  Lyn was all smiles as she called out "Happy Father's Day" to him.  She was happy to see him on screen and delighted when he graciously thanked her for thinking of him.

For me, the day was one to be ignored as much as possible while we were growing up.  Our father's choice to be absent from our lives made the whole concept painful to me.  Lyn seemed to live in the moment and never seemed to carry that burden with her.  While she could be upset by someone mentioning our father, she didn't seem to dwell on him or his absence.  She didn't seem to miss him.  I missed him terribly and it tormented me for a very long time.  I envied her ability to set it aside.

My husband is a wonderful man who has changed the context of Father's Day for me.  Now, when Lyn calls out a cheery salutation for the day, I don't wince inside.  She's happy to wish someone well and he's happy to accept.

Living in the moment has its advantages.

Friday, June 13, 2014

Blurry

It may be blurry, but it is a smile.  These days, I can't ask her to try again because she may not cooperate.  So, I take what I can get.


In a way, it is a good lesson for me.  Life isn't perfect but the good is there even if things aren't exactly as we would hope it to be.  The smiles are much less frequent now.  So, even the blurry ones have to count.

Thursday, June 12, 2014

Women are the Center

We've touched on women bearing the care giving burden for Alzheimer's patients.  Mom is just one example of this.  Mom provided care for her Mother and now continues to provide care for her daughter.

Here are a couple of clips which pertain to women being the center of this epidemic.  The first deals with the statistics.  The second gives you one woman's expression of some of the conflicting emotions and choices she faced.





I include the clip with Maria Shriver to illustrate that even with all the possible resources at your disposal, the disease takes a staggering toll.

Tuesday, June 10, 2014

Looking Within

I love Ted Talks.  We watch them around here fairly often.

In March, Stephen Friend of Sage Bionetworks spoke on the need to find individuals who have all the genetic risk for a disease but don't develop the disease.

 

Last week, Sage Bionetworks announced a challenge to "rapidly identify accurate predictive AD biomarkers...that can be used to improve AD diagnosis and treatment."  This is a big data project and teams will be making use of existing data sets.

Best of luck to the teams!

Monday, June 9, 2014

Finding the laughter

On Friday, Lyn was in an aggressive mood when Mom picked her up from day hab.  She was angry and speaking very harshly to Mom.  Mom advised her to stop because if she wouldn't she could just go to her room when they got home.  Lyn's tone changed to curiosity immediately.

"What's in my room?" she asked as though there was some delightful surprise.
"Nothing.  Just you if you keep this up."

Lyn scowled at the response and took a nicer tone.

I know it is hard and frustrating for Mom to experience first hand.  The good news is that she was able to laugh about it with me when she told me.  I couldn't help but burst out with laughter when Mom conveyed the "What's in my room?" question.

Friday, June 6, 2014

What the Mind and Heart Know

The mind knows that Alzheimer's is progressive and terminal.  The mind knows how the dementia will create a new normal each day and that skills and capabilities will be lost.  The mind knows there's no way to stop this disease and no cure.

The heart knows there's no way to stop this disease and no cure.   The heart knows this hurts to watch.

Knowing what the mind knows doesn't stop the heart from what it knows.


Thursday, June 5, 2014

Consoling

When you are tired after a 2 hr nap and don't know why, what do you need?
When you are weepy and don't know why, what do you need?
When you are sad and don't know why, what do you need?
When you aren't sure if you are hungry what do you need?
A very best friend.
A friend who wants to make it better but just would sit in your lap if allowed to do so.



Nikka is THE very best friend your sister could ever want.
Nikka looks perplexed because she can't make it better.

 For some reason, today's tears have really gotten to me.

Wednesday, June 4, 2014

Save the Synapses

In case you missed the Save the Synapses webinar hosted by the Cure Alzheimer's Fund, they have kindly recorded it and made it freely available.

Enjoy.


Tuesday, June 3, 2014

Sunburnt with Pride


On Saturday, Lyn and her respite provider were caught by Albuquerque's Pride Parade as they were leaving the restaurant where they were having breakfast.  Mom knew the parade was to happen this weekend, but didn't know the details of where or when.  As a result, they were stuck in the parking lot of the restaurant as the parade marched and danced and shimmied by for over 2 hours.  

Lyn loved it.  She waved and cheered at all the colorfully dressed participants.  She danced with the music as the bands rolled by and she enjoyed the creatively decorated floats.  

When she came home, she was sporting a very sunburnt face, several strands of beads she'd caught and a new t-shirt which she had also caught.  Mom asked to see the shirt and Lyn told her it was too dirty as she hurried to put it in her laundry basket.  

Lyn's respite provider wasn't sure how to explain the day to Mom.  She was actually a little uncomfortable admitting that they watched a Pride parade.  Mom thinks that she was worried Mom would disapprove or get angry.  It was an unfounded fear.  Mom was happy Lyn had a good time and got to see the parade.  Parades are fun, after all.  If the respite provider was worried because the parade celebrated LGBT Pride and feared that Mom would disapprove of that, she was incorrect.  We're pretty open and accepting in our family.

Later in the evening, I spoke with them and asked to see the shirt which she described to me as having to do "with stuff people do but shouldn't be doing."  That sparked my interest.  She didn't remember her refusal to show Mom the shirt and quickly got it to show me.  It is an advertisement for a vodka brand.  I had to laugh.  She didn't remember what the shirt was for and could not read the words on it.  There is no picture on the shirt, just the name of the vodka.  However, her respite provider must have told her what the shirt said and Lyn just knew she didn't approve of it.  


Monday, June 2, 2014

Alzheimer's and Brain Awareness Month

June is the Alzheimer's and Brain Awareness Month.

You can



The numbers of those impacted by Alzheimer's is growing.  So, in June, consider going purple in one way or another.