Thursday, March 31, 2016

A Dinner Request

Dinner requests are few and far between from Lyn these days.  She doesn't remember what she likes or doesn't.  She doesn't remember what she can ask for unless there is a menu with pictures for her to see.   Recently, she shout of a dish and made her request.

Lyn asked Mom if she knew how to make spaghetti.  Mom told her she was happy to make it.  It had been several weeks since they last had it.  As Mom started to serve Lyn's plate, she asked how hungry Lyn was feeling.  Lyn didn't know how hungry she was feeling.  This is a common issue with Alzheimer's patients.  Mom put a smaller than usual portion on her plate knowing that if Lyn wasn't very hungry it wouldn't be wasted and if she was, then a second helping could be given.

Lyn loves pasta.  She all but licked the plate clean and asked if there was more.  Mom asked if Lyn needed help getting more.  "All I want is more sauce because that's what I like."  Mom was caught off-guard by the reply.  Lyn served herself a large portion of just the sauce.  This was a first!

When Mom packed a portion for her lunch, Lyn asked for extra sauce as well.  Next time, she might not like the sauce.

Tuesday, March 29, 2016

Easter Dinner

Mom invited one of her brothers over for Easter dinner this weekend.  Yesterday, Lyn's speech therapist paid her regularly scheduled visit and asked about their holiday.  Lyn struggles to explain relationships between people.  So, to convey her thought to her speech therapist she explained "One of her (Mom's) brothers and his guest came to eat."

Mom prompted Lyn to identify our uncle.  She did that correctly.

"So who was his guest?"  Lyn stated our Aunt's name correctly.   She didn't use the title of "Aunt" because our aunt joined the family when we were adults and titles were no longer enforced.  When we speak about or to our uncle, we still precede his name by the title "Uncle" out of lifelong habit.  The presence or absence of the title has nothing to do with our love and respect for them.

Lyn identifies his "guest" by her name and the speech therapist has no context until Lyn helpfully explains "They're married."

Monday, March 28, 2016

Of MRIs and Meds

Last week, Lyn had her second MRI since we began this whole Alzheimer's experience.  Lyn was highly cooperative.  The ability to hold still would have been difficult for her especially given the noise of the MRI machine.  Lyn's doctor prescribed a very mild medical assistance for Lyn which helped.  The MRI technician was very kind and personable, working well with Lyn.

While the technician provided Mom with a copy of the MRI on CD, it will be a few days before Lyn's physician will have the results.  Mom will hear the results in a couple of weeks when they have a follow up with the physician to check on how Lyn's tolerating the anti-anxiety medication.  They decided to just handle both topics in a single consultation.

As for the meds, Lyn's tolerating them very well.  She claims that they are not working and that she notices no difference.  Mom reports that she noticed a difference in Lyn's moods about mid-week this past week.  Lyn is less emotionally reactive and more stabile.  She's not quite as argumentative as she has been.  On Saturday, when we had our Skype conversation, Lyn was exhausted.  She had been out with her respite provider for about 7 hours.  She had eaten and was ready to fold.  However, she participated in the conversation and wasn't hostile.  She went for her bath and Mom and I both expected tears.  I never saw any.  Perhaps she cried after we ended the call, but she maintained a calm but tired demeanor during the conversation.

I agree that the meds are working as intended.

Friday, March 25, 2016

Family Feud

Lyn has loved game shows her entire life.  Wheel of Fortune and Jeopardy have long been her favorites.  She also enjoys Family Feud, particularly with Steve Harvey as host.  Game shows are interactive for Lyn.  She will call out her answers just as much as she will cheer on the bull riders when she watches PBR.

Yesterday, while watching Family Feud, the question posed was "We asked 100 men what men like to watch other men do."  Before the answer is given on the television, Lyn offers up her answer with confidence and volume.  She yelled "Take off their clothes!"

Clearer proof that her brain is changing is not needed.  A few months ago, she would have been mortified by such a response.  She would have been mad last night if she had known of the gales of laughter her response provoked.

Tuesday, March 22, 2016

Zoo Escapee

Last week the Rio Grande Zoo had an animal escape its enclosure.  Lyn found this news to be particularly memorable and decided she needed to tell me about the escape.  When I asked what escaped, she started listing what didn't escape.

"It's not a crocodile."
"It's not an alligator."
"It's not a gorilla."
"It's not a lion."

She wasn't trying to get me to guess.  She was evaluating each animal she could think of to see if it jogged her memory.  None of she short list of options were right.  It was a siamang but she had neither the word nor a recognition that it was a monkey.

She just thought it was exciting that an animal escaped.  I thought it was sweet as she tried to figure out what it was.

Monday, March 21, 2016

No Change Yet

Lyn's been on the anti-anxiety medication now for 5 days.  It takes about two weeks for the medication to build up in her system.  During this time, she's on a very low dose and will then be bumped up to a higher maintenance dose.

She's not thrilled with the new medication.  She doesn't like the idea of having to take it every day because she doesn't like the taste of it.  Mom and I are pointing out that a Hershey Kiss takes away the taste and she can have a kiss after she takes her medicine.  We are also pointing out that sometimes we need medicine every day.  For example, all three of us have to take medication for our thyroids.  She doesn't have the concerns that many people have about needing treatment in the mental health realm.  For her, there is no stigma associated with the treatment or the need for it.    Her objection is really founded on the flavor issue.

In the short time she's been taking the medicine, we've not yet seen a change in her agitation or hostility.  On the positive side, we're also not seeing any adverse reactions.  We're hoping that we'll see her less anxious once the full dose is being administered.

Thursday, March 17, 2016

Daily Meds

Part of living with Alzheimer's is to try reducing the person's stress.  When the stress is resulting from your own internal processing of your external stimuli, there's not much that can be done to reduce that stress and medication needs to be seriously considered.

Mom had wanted to avoid medication if at all possible.  However, Lyn's now struggling with her emotions on the days when she's at home doing what she wants to do with minimal stimuli.  She's miserable and that's not fair to her nor does it lead to a good quality of life for her.

We've thought about it.  We've watched her and two doctors have weighed in.  It is time for Lyn to go on a daily medication to help ease her anxiety and agitation.  We've evaluated the risks and benefits.  Her emotional state needs stability and right now the risk of a fall or something similar is relatively low.

Lyn's not able to take pills well.  She's never mastered that skill.  There is liquid medication available but that formulation is not commonly requested.  Lyn's doctor submitted a prescription to the pharmacy yesterday but it has to be ordered.  Mom will hopefully be able to pick it up today or tomorrow.  She will start Lyn on it and for two weeks, Lyn will be on a very low dose before they increase the dose a bit for the maintenance level.  Lyn will see her doctor again in four weeks to make sure that she's tolerating the medication well and that it is having the desired result.

Wednesday, March 16, 2016


Early this week, my husband was listening to music as he was working and a song by Willie and Lobo came on.  Willie and Lobo is a guitar and violin duo which plays New Flamenco and World Music.  He decided look up their website to see if they would be on tour in the US this year, hoping to catch them in concert.  We have a number of their albums and have enjoyed their work greatly.

He was saddened to learn that a year ago Willie, the violinist of the duo, was diagnosed with Alzheimer's.  It appears that Willie is now retired and being cared for by his wife.  We wish them well and hope his days are filled with sun and smiles and that the music continues to bring him joy.

Tuesday, March 15, 2016

Scatter Joy

Lyn believes with every fiber of her being that things which make her mad should be actively avoided.  We know there are some constants.  She would be mad if she saw the cocktail sitting next to me as I write this.  She would be mad if she knew my husband and I don't intend to follow her advice about our marital relations.  She would be mad if she heard someone say something about some bodily function.  However, sometimes, we don't know or anticipate just how she will react to a stimulus, especially a novel one.

A dear friend has found a way to anger Lyn and hours later, she's still mad!  She might just be mad for days over this.   My friend has long followed the blog and connected directly to Mom over the holidays.  The connection has brought laughter to all parties involved until yesterday.

Yesterday, Mom received a rather heavy package.  When she picked it up, there was no sound to indicate what was inside.  Upon opening it, she found a bag of pennies and a card which encouraged her to "scatter joy" and to dole out the pennies as she saw fit.  My friend knows of Lyn's obsession with pennies.

Lyn's eyes popped when she saw the bag of pennies.  She realized the package was addressed to Mom and it wasn't hers to claim outright.  She was not happy.  After Mom read the card, she read it out loud to Lyn and explained that the pennies are for sharing when Mom decides and with whom Mom decides.  Lyn was not happy.

Mom reached into the bag and picked out a few pennies.  Lyn was not happy but she didn't refuse them.  She took them and put them into her penny jar.  Later, she said,  "I should just take some of those and fill my jar up."  Mom responded with "I don't think so."  Lyn is not happy but knows she can't stake a claim on them if they're not addressed to her.

Mom will use them over the coming weeks and Lyn will brighten up about it.  In the meantime, Mom is getting a good laugh at the unexpected and novel nature of the package and the thoughtfulness behind it.

Monday, March 14, 2016

Time to Sweat

There is an increasing body of evidence that exercise helps protect the brain from Alzheimer's.  The newly released study titled "Longitudinal Relationships between Caloric Expenditure and Gray Matter in the Cardiovascular Health Study," finds that exercise increases the volume of gray matter.

Gray matter volume decreases with a sedentary lifestyle as well as with Alzheimer's.  Increasing the volume of the gray matter, allows for more neurons to be present.  More neurons means more connections which can be maintained even if there are plaque tangles in the mix.

Unless you're exercising daily, you've probably heard your doctor recommend that you incorporate exercise into your daily routine.  I know I have.  Thirty (30) minutes of daily exercise has substantial health benefits such as reducing high blood pressure and reducing your risk for certain cancers, stroke or heart attack.  If those don't motivate you, then let the potential protection from Alzheimer's be a motivator.  I have and am now up to 40 minutes on average 6 days a week.

Additional Information:

Exercise and Physical Activity - Alzheimer's Society  
Physical Exercise and Diet -
Alzheimer's and Dementia Prevention - HelpGuide

Thursday, March 10, 2016

Community Access

Mom and Lyn's team have been working to get her Community Access services.  Community Access provides direct, one-on-one outings into the community during the time when she would normally be in day hab.  These services have been approved as part of her ISP budget.  Mom had reviewed the providers available and chosen one.  Then things started to get odd.

An individual from the chosen agency started calling Mom, the folks at day hab, and members of Lyn's team seeking information.  The individual claimed that the information was needed "in case of an emergency."  The information being requested was things like a copy of Lyn's most recent mammogram and pap smear results.  All of us were caught off-guard.  If Lyn was out at a store with a service provider and there was an emergency, how would a copy of a mammogram be of ANY use?  How would they use pap smear results?  Do they ask for prostate exam results on their male clients?  If they do, how would that information help in an emergency?

The individual who was asking was not yet part of Lyn's team and everyone approached denied the information to that person.  IF that person had become part of Lyn's team, they would have then gained access to her medical information such as what medication she's on, who her medical provider is, who is the emergency contact and copies of her DNR orders.  However, this individual wasn't officially on the team and we had no indication that person would be on the team.

A meeting was scheduled to happen this morning in which Mom and Lyn would meet with representatives from the agency for interviews.  It turns out the agency had already decided Lyn would work with the individual who had been calling around.  It also turns out that the individual was not fully trained and totally jumped the gun on trying to collect medical information as well as asking for information for which they have no business having.  The director admitted to having dropped the ball on the training and chalked it up to having a toddler and having to fire two staff recently.  Upon learning this and more, Mom has terminated contact with the agency and cancelled today's meeting.

The agency didn't realize that Mom and Lyn have been on the DD Waiver long enough to know what to expect and when things are amiss.  Mom already has a second option for Community Access services being lined up.

Wednesday, March 9, 2016

Lost in Dementia

My local news station had an interesting story about trying to find individuals with dementia when they are lost.  It gives some interesting insight into why dementia cases are different than other lost person cases.  They tend to move in a direct line, downhill along the path of least resistance, stopping when they reach an obstacle.  They also tend to not answer when someone calls their name.

Take a look at the video in the link above.  I've tried to use the embed video script but it doesn't appear to be working.  While you're there, you can check out their seven tips for helping authorities when you are faced with a lost dementia patient.

Tuesday, March 8, 2016

Guest Bloggers

I'm not opposed to guest bloggers in theory.  However, if a guest blogger really wanted to post here, the post would have to stick to the rules I follow.

  1. Never reveal the real name of people referenced in a post.
  2. Stick to the limited scope of topics which define Dementia Be Damned.  That means either tell a true story about my sister's life or share information about research into Alzheimer's progression, treatment and prevention.
  3. If you wish to write a story about an Alzheimer's patient in your life, I will consider it if I can validate you and the story you're telling.  Trust is important on this one.  I can think of a few people who would pass this right off.  
  4. If you're writing about a treatment, don't pitch it as a cure and NEVER try to pass homeopathics, coconut oil, marijuana, psychics or other such nonsense off as a cure.  Let's talk about the stuff for which there is legitimate studies backing up your claims; not anecdotal passing of misinformation.  
  5. Dementia Be Damned is not here to give false hope.  Be realistic and honest.  Charlatans need not apply.
Sure, it would be easy to let a guest blogger post something.   Once posted, as with the way of the internet, it will be forever associated with Dementia Be Damned.  While our audience is small, I feel a commitment to them and to what we've built here over the last few years.  

Ultimately, Dementia Be Damned is my blog and my veto is in play at all time.  Heck, I veto some of my own posts and should veto some of my spelling mistakes.  

So, for those of you who would like me to let you guest blog, your cold call type of inquiry will most likely go unanswered if I even have a hint of any of the items in point four above.  That's a total non-starter for me.  If research one day proves that a cure for Alzheimer's is found in coconut oil or a distillation of some herb diluted so many times that a "memory" of it exists in the water I will issue a retraction of point 4 and my post on snake oil treatments.  Until that day, peddle your wares elsewhere.

Monday, March 7, 2016

SIS Review

Over the weekend, both Mom and Lyn received written notification that there will be a new Supports Intensity Scale (SIS) evaluation performed soon.  We were a bit surprised about this and wondered if it was triggered by the request to add more one-on-one community access time into her ISP.  The timing is coincidental and the two activities are not connected.  It turns out that the State mandates that the SIS evaluation be repeated every three years.

The University of New Mexico has contracted to perform the evaluations and to keep those on the disability waiver up to date on the State's requirement.  Lyn's was last done in April 2013.  So, this new evaluation is actually right on time.

The test is designed to measure what supports an individual needs for 57 different activities and in 28 behavior and/or medical areas.  When she was first evaluated in 2012, the results indicated she was at a B level and able to live independently.  One year later, the results set her at an F level.  I'm not sure if the grading scale is the same as it was 3 years ago.  Or if NM is using a scale unique to the state.  We'll find out as soon as the results are known if not before then.  It will be interesting to see a comparison of her test results from 3 years ago and what the State thinks this means for her.

Friday, March 4, 2016

The Global Impact of Dementia

Alzheimer's Disease International has published their latest World Alzheimer Report.

They have provided this staggering info graphic.  I've broken it into two pieces so that it can be readable here.

Wednesday, March 2, 2016

Neuropsych Eval Follow Up

Yesterday, Mom had a follow up face-to-face conversation with the clinician who performed Lyn's recent neuropsych evaluation.  The clinician is completing the written report and expects to send it by the end of the week.  This conversation allowed the clinician to get some final questions asked and answered.

While we don't have all the details of the evaluation, we have some of the high points:

  • Lyn definitely has Alzheimers.  We've been pretty darn sure for the past four years but it is great to get confirmation after previous clinicians have shied away from the topic.  
  • A second MRI has been suggested so we can have comparisons and can see if the physical changes to the brains structures is already evident.  I wonder if we'd be able to determine how much volume has been lost so far.
  • A recommendation has been made that Lyn go on daily medication to help mitigate her anxiety and frustration.  The current medication is only as needed to get her through a high anxiety bout; not for chronic levels she experiences.

There will be more suggestions and commentary in the written report.  If we get nothing more than this, I think it was worth the effort.

Tuesday, March 1, 2016

Time for Timers

Let's get creative!

When you are faced with an anxious person who is hovering mere inches from you for every waking moment, how do you get a few minutes away to do things like use the restroom?  How do you step away for a quick call without someone listening in and critiquing your word choices?  How do you keep from losing your patience when you don't get a moment to think without assistance?

It takes a lot of patience and irritation is going to happen even with the most patient person.

In the moment that you need to go to the restroom and you find another adult hot on your heels to join you, you could snap at them or close the door in their face.  That will cause confusion, an increase of anxiety and potentially anger.  Instead, a kitchen timer may be of assistance.

Set the timer for the time you need such as 5 or 10 minutes.  Give the timer to the individual and tell them that you need to step away for a just a few minutes.  Tell them that the timer will keep the time for them and that you will be back before timer dings.

For some individuals with Alzheimer's this technique works well.  It gives them a tangible reminder that you're just around the corner and will be right back.  Otherwise they feel like they have been abandoned and are lost.  The hovering behavior is a direct result of their anxiety and sense of know knowing where they are in their environment.

Lyn's firmly in this stage and her hovering seems to be peaking.  She is keeping in near constant contact when she's home with Mom.  The house layout allows Lyn to see Mom from nearly every room if Lyn's not in her room.  If the phone rings, Lyn comes and stands next to Mom to listen in.  When Mom needs to step away for a minute, she tells Lyn where she's going before she steps into the other room.  She may say she's going to the restroom or into her room to change for church.  Within a minute, Lyn's knocking at the door asking where Mom's at and telling her that Nikka is looking for her.  Lyn's trying to cover for the fact that the anxiety is her own and not the dog's.

Mom has a kitchen timer and is going to start trying this technique with Lyn.