Wednesday, December 31, 2014

Auditory Hallucinations

Auditory hallucinations are when a person believes they hear something that they actually did not hear.  A common example of an auditory hallucination is when someone hears one or more voices and those voices do not blond to anyone around them.  Auditory hallucinations can be a common occurrence with Alzheimer's patients.  According to the National Institutes of Health, as many as 53% of Alzheimer's patients experience hallucinations of some form during the moderate to severe (middle) stages of the disease.  Hallucinations can increase anxiety in the patient because they cannot get confirmation of what they have experienced or the hallucination is itself frightening.

Hallucinations may be a side effect of medication, a result of Sundowning, or over stimulation.  Because the hallucinations are frequently associated with psychosis which is a disconnect with reality, a patient may be prescribed antipsychotic medications to help mitigate the impact of the hallucinations.

Hallucinations may also be the result of misunderstanding a stimulus.  If a patient hears something, the patient may not process the sound accurately and may experience something other than what was actually happening as a result.  A 2013 study confirmed that Alzheimer's patients have significant hearing changes, particularly in their left ears, than others in the same age group without Alzheimer's disease.  To complicate matters, the progression of the Alzheimer's may make it difficult for the patient to describe what they have experienced in a way that is coherent to the caregiver.

I remember Grandma having visual and auditory hallucinations about 4 years before she passed.  I was home from college and helped care for her that summer when her hallucinations peaked.  Looking back, I wish we had known what was going on because we would have been better able to help her through the hallucinations and may have been less stressed ourselves.  I particularly remember sitting in her room with her one-day when she looked up and started talking to someone else.  She was convinced there was a man standing in the doorway to her room.  She was mad at me for not being polite and acknowledging him and blamed his departure on my behavior.  Mom reminded me of the time Grandma was mad that there were children in the apple trees out back stealing the fruit.  She calmed down when I went outside to chase them away.

Lyn has begun indicating she's hearing things which are not happening.  For example, she is convinced that people are racing their cars in front of the house.  This is a physical impossibility because they live on a dead end.  Cars do race down the road behind the house, but Lyn reports the racing is out front and at times when there's no racing out back.  She's also convinced that her oxygen condenser is making strange sounds.  Over the past week or so, Mom has gone in and sat beside Lyn with the condenser on, asking Lyn to just raise her hand when the strange sound occurs.  She doesn't raise her hand with Mom there.

Earlier this year, Lyn's hearing was checked and it was fine at that time.  However, it may be time to have it checked again.  I wouldn't be surprised if there was loss in the left ear.  At this time, Mom's able to use supportive techniques to assure Lyn that everything is OK without telling her that she's hearing things.  Denying the hallucination would increase the agitation.  Mom has started reminding Lyn that if there is a sound that needs to be worried about, Nikka will bark.  If Nikka is calm, then all is well.  Lyn accepts Nikka as an external check of the household status and, so far, allows herself to be redirected.

Lyn has Sundowned for years and the hallucinations may be a result of that.  They may also just be a result of the deterioration of her brain.  Given how little medication she's on; just a thyroid medication and a multi-vitamin, the hallucinations are not a result of her medical supports. Mom and I have talked about the hallucinations and the increasing bad attitude that Lyn is demonstrating.  We believe they are connected and are the progression of the disease.  We also believe that Lyn should be seen by her physician so that she can be evaluated.  It may be time to introduce additional medical supports to help ease the agitation and the hallucinations.

Additional Information:
Dementia and Hallucinations
Hallucinations and Alzheimer's

Tuesday, December 30, 2014

Brain Training

Have you noticed the number of commercials lately extolling the virtues of "neuroplasticity" and "brain training?"  They claim that by completing computer based tasks, you will increase your brain's health, make new neural connections and potentially stave off cognitive declines.  But do these services actually do what they claim?

When I tried digging into the question of what exactly is brain training and how does it work, I kept encountering the sites that are selling the software that is used.  In short, they have created a number of computer based games that they hope you find engaging even if they are asking you to complete a repetitive task.  Can you complete a maze or recall the direction something was pointing?  Can you figure out the shortest number of steps to get from point A to point B?  I won't link the sites here because I don't want to advertise directly for any one service.

The brain training services smack of pseudoscience and play on people's fears of dementia.  They've found a market and are doing a great job advertising their product to the masses.  There's money to be made in convincing people to pay for the games or computer based tasks.  But do they work?

Recent studies bring back mixed results on the effectiveness of brain training.  The ability to recall a visual image may be slightly improved while the ability to plan is not improved at all.  Participant scores on games did increase.  I had to chuckle when I read that one of the computerized games that was used was Pac Man and that over 14 weeks, participants increased their score in the game.  If I played Pac Man or any other game for 14 weeks, my score would improve too.  That's great but can skills at Pac Man generalize and be useful in other areas of life?  That's the rub.  Most recently, a study indicates that computerized brain games don't prevent cognitive declines or increase intelligence.

So why does this matter?  Well, one of the pieces of advice I routinely see on how to avoid Alzheimer's is to maintain an active brain.  Reading, crossword puzzles and other activities which require you to really think are given as example of maintaining brain activity.  While we're reading or taking a class to stay engaged, we need to also remember to sleep well, exercise well and keep up good nutrition while maintaining active social lives.  Each of those are actually critical to maintaining our cognitive abilities for as long as possible.

Should you sign up for brain training?  I'll leave that to you to decide.  If you enjoy it, go for it.  There seems to be no physical harm in participating.  Harm to your bank account may be a different issue.

Additional Information:
If Brain Training Won't Help the Elderly, What Will?  

Monday, December 29, 2014

Santa on Replay

Lyn's message from Santa is getting more play this year than any previously have been played.  When her mood is short-tempered and snappy, Mom's started turning on the video and turning up the sound so that Lyn can hear Santa remind her to be polite.  Lyn looks startled each time but instantly changes her tone of voice.

It seems to be working but the impact is always short-term.  She doesn't seem to remember that Mom has used the technique before.  She's struggling to keep from being constantly crabby.  If my brain was shorting out on me and I felt my abilities slipping away, I'm sure I'd be constantly crabby too.

On the positive side, one of the gifts that Lyn received for Christmas this year is a big hit.  She'd seen a wooden puzzle in a catalogue in the fall and had asked Mom if the puzzle was "Ok for grown-up ladies to have?"  Mom assured her it was and Lyn made her desire for the puzzle known.  To keep her from getting upset that Mom didn't buy her one right away, Mom told Lyn that the puzzles were on back order.  Lyn was thrilled to find one under the tree Christmas morning from Santa.  He was clearly the reason why the puzzle was on back order.

Perhaps it is the bright colors and the simple shapes that attract her to this puzzle.  Whatever the reason, she loves it and has been actively playing with it since she unwrapped it.  She'll be able to make different designs each time.  There's no picture for her to try to match do or pieces that have to lock together a particular way.  She can fit pieces and match colors however she likes.  This puzzle was a great find!

Thursday, December 25, 2014

Christmas 2014

When Mom picked Lyn up from day hab earlier this week, Lyn came out with her hands full.  She had several cards and a wrapped gift.  The gift had a card taped to it that read "mom".  Mom didn't say anything.  As they got on the freeway, she said "I need to send this to my sister for Christmas."  Mom pointed out that the card had "mom" written on it, in her writing.  "That's my mistake.  I want to send it."  Mom's clearly on Lyn's naughty list.

Hopefully, you're not on a naughty list and have a lovely holiday.

Wednesday, December 24, 2014

Change Jars

From Mom earlier this month:

I was just paying bills.  She came in to see if I needed help so I gave her shredding to do.  I'll save the shreds for packing.

I told her I had some pennies for her jar.  After giving her a handful, I said "look how much I have to put in my jar."  (Mom also has a jar for loose change.)  I asked her if she wanted to trade pennies for quarters.  I brought the jar into the kitchen while she got her wallet.  She sorted her coins.  She had over $5 and with a straight face said that if I wanted to trade, she'd take 1/2 of what's in the jar and put it in her Cinderella bank.  I asked what she was trading for 1/2 the coins.  She handed me 2 quarters.  Somehow, I think I'd be shortchanged.

I suggested she get the Cinderella bank and put her coins in it.  She brought it in and put them in it.  It's quite heavy so she's been putting coins in it.

I asked if Minnie had many in her and she said "no, she doesn't like them."

Tuesday, December 23, 2014

Making Chains

Do you recall making chains of craft paper to use as holiday decor?  Lyn and I both made them in school to decorate the classrooms.  I remember making a calendar to count down the days until Christmas.  We were to tear off one link a day.  This craft resurfaced recently because it is an activity they have been doing at day hab.

Lyn told me about making chains at day hab and asked if I needed some.  She noticed that I don't have much in the way of holiday decorations in the spot where I sit when when Skype.  I offered to send her some craft paper so she could make chains to decorate the house for Mom.  That distraction only worked for a minute and Mom was no help redirecting her away from decorating my house.  In fact, one could argue that Mom was directly interfering and trying to get Lyn focused on decorating my house instead of hers.  Mom even offered up a box and shipping.

I laughed it off until this week's conversation when Lyn showed me the chain of alternating red and green links that she's making for me.  I'm to hang it over the artwork in my dining room where she'll see it when we Skype.  Mom's got a box ready to go.  It's going to have to be a pretty good sized box to fit a chain designed for my wall.  The frame Lyn wants to have the chain hang from is 4 feet long.

My hope is that Mom will decide this project isn't worth the cost of shipping but, knowing her, she will send it anyway.  Just because.  Just because that means I'll have to hang it up when I get it.  Just because I may have to store it for a year too.  Just because Lyn made it for me and expects to see it when we Skype.

Red and green may not match my Christmas decor, but it will go up and we'll be sure to make a fuss over it as I quietly plot a way to get back at Mom for this.

Nothing says family holiday cheer than petty revenge.

Monday, December 22, 2014

Antipsychotics and Dementia

As Alzheimer's and other dementia-related diseases progress and the damage to the brain increases, patients will often start demonstrating behaviors which can be very difficult to manage.  The patient may pace or rock back and forth.  They may experience delusions or hallucinations.  They may start screaming and may become aggressive towards other people around them, even becoming a danger to themselves or to others.  For years, these behaviors have been mitigated by the use of antipsychotic medications.

Antipsychotics were developed to treat schizophrenia which can have similar symptoms.  There's now some evidence that Alzheimer's and schizophrenia may have more in common than just a handful of symptoms.

Antipsychotics will dampen down the behaviors.  However, they may also place the person at increased risk of injury or death because the person is more likely to fall while on the medications because the side effects of the drugs include dizziness and sedation.  These drugs do not treat the cause of the behavior which may be pain.  If a patient is fighting an infection and is unable to communicate their symptoms to the care providers, the patient could be in high levels of pain which causes the challenging behaviors.  Urinary tract infections are a common example which comes to mind.Studies had suggested that antipsychotics could be reduced as a primary method of care for Alzheimer's patients.  Government recommendations were updated, guiding towards a reduction of antipsychotic use in geriatric care.

Recent reports have highlighted a reduced amount of antipsychotics are being given to dementia patients.  Closer attention has to be paid to the patient's overall physical health and more interaction with the patient must be provided to maintain a quality of life where the person is not left sitting, bored and unattended in a chair for hours.

That is challenging in a nursing home setting.  Is it impossible in a home setting?  In the home setting, there are fewer staff available to cook dinner, care for the patient, maintain the facilities and keep the patient engaged with activities.  Each home setting is different and none are regulated.  Nurses are not frequent visitors, checking on patients and their care givers.  The care givers rely very heavily upon the doctors who may be prescribing the antipsychotics to advise them on the appropriate and safe medication to give.  The care givers most likely do not know that antipsychotics are not the best choice.

It seems like there is more room for improvement, especially with regards to those patients in home care.  Their doctors should be taking the call to reduce the use of antipsychotics more seriously and reduce how much they prescribe the antipsychotics.

Friday, December 19, 2014

Unexpected Interruptions

We've had a few unexpected interruptions this week.

First, my household was hit with the flu and a secondary, flu-like virus despite flu vaccines being received earlier this fall.  It knocked us for a bit of a loop and I'm just now able to string multiple sentences together again semi-coherently.

Second, we were treated to an infrequent example of my sister's malicious streak.  She apparently decided to express her displeasure at the respite provider by telling another client of the provider that he shouldn't work with her anymore.  (They attend the same day hab which is now they know each other.)  The other client told the respite provider who contacted Mom.  To say Mom was angry is an understatement.  It is just so wrong to go after someone's livelihood.  Yes, people with Alzheimer's can be that mean.  The mental governors which may stop them from expressing such ugliness are gone.  While the Alzheimer's is a factor, it cannot be used as an excuse and the behavior cannot be tolerated.

Lyn will have no respite care until January at the earliest.  Mom and the respite provider would like to have a conversation to sort things out but both would like to get through the holidays first.  Apologies have been made to the respite provider.  However, the whole episode has revealed a couple of things.

The respite provider had been making plans with Lyn with the expectation that Lyn could properly convey them to Mom.  Lyn cannot retain even one bowling score between the drive from the alley to home which is less than 30 minutes.  The respite provide had not fully understood that Lyn cannot retain any plans for a day or two on her own.  She requires constant reiteration of plans by Mom or others around her.  If Lyn thinks the plan for the day is A and it turns out to be B, she cannot adjust.  There is no flexibility.  All of this has factored in and led to miscommunications and anger.

I don't know if this respite provider will continue to work with Lyn.  I suppose it is a possibility but we'll have to see what comes of the conversation to be had after the New Year.

Monday, December 15, 2014

Of Respite Providers

Being a respite provider has got to be a challenging job.  You are employed to provide occasional care to an individual, allowing their primary care giver to have a break.  The care needs may be a few hours a month to several hours each week.  The schedule may vary widely or may be highly fixed and repetitive.  Usually, the respite provider and the client's primary care giver negotiate what hours are scheduled.

Some respite providers offer their services as a second source of income.  They may be full-time students or even hold a full-time job elsewhere.  Their other commitments may prevent them from being available exactly when the client wishes.   Some respite providers offer their services to more than one client at a time.  When this happens, if two or more of the clients get along and if all are agreeable, the respite provider may coordinate joint outings.

When you're a respite provider, you're to take care of the physical needs of the client and to accommodate the interests and desires of the client so long as the activities do not endanger anyone.   If the client wants to go bowling, then that's what should be on the agenda.  If the client wants to eat out at the same restaurant every single time they go out, then the client should be taken to the same restaurant.

Clients can be a challenge because of the limited set of venues they want to visit, their own communication or emotional limitations.  Clients can be demanding, petulant, excited or dull.  What the client wants to do may be boring to the respite provider.

But, it is not about the respite provider.  It is about the client.

What the respite provider hopefully remembers is that by providing their services, they are actually helping maintain an engagement between the client and the community.  They are giving the primary care provider time to take care of their own appointments, their chores or even giving them time to just soak in a tub of bubbles.  This improves the quality of life for both the client and their primary care provider.

It must be hard for the respite provider to balance all the scheduling needs, the personalities in play and their own personal lives.  I suspect there may be a high rate of burn out and I think we're seeing that come into play with Lyn's current respite provider.  She is the 4th or 5th provider we've worked with at this point.  When each of them started trying to find ways drag Lyn along on their personal errands instead of focusing on what she wanted to do in their time out, we knew their time working with Lyn was coming to a close.

This week, Lyn's respite provider flaked out on their Friday plans and just shrugged it off with an "oops."  On Saturday, instead of taking Lyn bowling, she took Lyn to her son's swim meet.  Instead of going bowling after the swim meet, she took Lyn to a department store where the respite provider returned a dress and tried on shoes.  Lyn came home in tears.  The respite provider didn't even escort Lyn to the door because she had to go pick up another client.

When Mom and I spoke about it on Saturday, I was concerned that Mom would say that she's going to end working with this respite provider and not get another one lined up.  I was afraid she would say something along the lines of "I'll just do it all myself."  Thinking this way is a recognized stage of being a care provider and it is a risky one.  No one can care for an Alzheimer's patient 100% on their own.  For their own sanity, they need some assistance.  Fortunately, Mom didn't express anything like that and agreed that having respite care is as critical for her as it is for Lyn.

So, we'll see what happens over the next week or two.  If things don't change with this respite provider, then we'll transition to another.  I used to worry about Lyn handling the transitions well, but I don't anymore.  She seems to handle it pretty well.

Thursday, December 11, 2014


With increasing frequency, Lyn is surly and argumentative.  While we can explain it as the Alzheimer's, there are days when her behavior indicates that she's still aware of when she's pushing limits or behaving poorly.  Tuesday was one of those days.

She had been aggressive and ugly with Mom before going to day hab.  In the afternoon, she was being exceedingly sweet and solicitous.  She does this when she is trying to make amends for earlier bad behavior.  Mom emailed me to let me know she was risking a diabetic coma from how sugary sweet Lyn was being.  As my dinner cooked, I called to check on them.

As we chatted, the topic of my eldest's winter school concert, caused us to reminisce about a high school choir concert in which I had to wear a pink lame dress with a big bow across the backside.  Mom joked about how I liked the dress and it made her "want to vomit."  The sentence had hardly left her mouth when Lyn started chastising her.

"Mom!  Don't talk like that.  You know we don't say those things.  It is not appropriated."  The tone was strong and disciplinary.  Mom tries to ignore these comments or just replies with a simple "I know." 

"Put her on the phone."  I said and Mom passed Lyn the phone.

"Hi!  How are you?"  Her voice was cheery and sweet.

"I need you to do me a favor, please."  I decided to open with something that would keep her interested.  "Be nice to Mom."  

"I am!"  Her voice was still chipper.

I told her I had heard her and I knew she had gotten onto Mom.  I told her that Mom said "vomit" when she was joking with me and that it was OK for her to say it.  I told her that Mom was not inappropriate and that vomit is not a bad word.  I was polite but firm.  She started to cry and passed me back to Mom before pounding back to her room.  She doesn't know what to do what someone other than Mom corrects her behavior and was weepy the rest of the night.

I apologized to Mom for crossing a line with her.  Mom assured me there was no line crossed.  

I'm not sure that there are rules in Lyn's head about what words are OK to say and what are not.  Sometimes, I know the patterns.  We can anticipate reprimands from her when the topic involves alcohol.  However, there are times when I'm hard pressed to see how what was said broke a social taboo in Lyn's mind.

I know my getting onto her won't make a difference in the long run.  We're working with her on several fronts to try to reduce the amount of behavior challenges she's exhibiting.  To be honest, a crabby attitude, raised voice and bossy nature are relatively low on the challenging behavior spectrum.  She's not violent, for example, but it is obviously tiring Mom.

Wednesday, December 10, 2014

Calculations and Calendars

Lyn has an Advent calendar.  It is one of those that has little chocolates behind perforated card stock boxing.  Each day, Mom reminds her that she can open a door and get the day's piece.  Each day, Lyn counts the open doors.

"1, 2, 3, 4, 5..."

She's been able to count each opening correctly so far.  When she finishes the count, she looses the number and is unable to remember the value which comes next.  It is as if the lack of another opening stops the count in her mind.  She wants the candy and picking any opening won't do for her.  She's found a solution though.

When she looses the count, she goes to check the newspaper.  She knows where to check for the date as Grandma taught her all those years ago.  She looks at the date and finds the corresponding number on the calendar.  Finding a match, she opens the door and gets her reward.

Tuesday, December 9, 2014

Two Santas

Last week, Lyn's respite provider took her to the Festival of Trees.  Lyn was super excited because she encountered two Santas!  This is an amazing thing and one to not be questioned in her book.  One Santa is good.  Two are great!

Monday, December 8, 2014

A Busy Week

Lyn's gearing up for a busy week and I'm not sure how functional she will be come next Monday.  Aside from the regular Monday - Friday day hab adventures, the second half of the week is packed.

Thursday night ushers in the festivities with a Christmas dance at the Convention Center.  It is an annual event for the city's special needs citizens.  On Friday, she has a party at day hab and she's been asked to help sing some of the carols like Feliz Navidad.  When she leaves there, her respite provider has invited her to a second party.  Afterwards, they will go out to dinner and then view some Christmas lights with her respite provider.  On Saturday, she will spend the day with her respite provider.  On Sunday, she and Mom will be attending a matinee performance of the Nutcracker ballet.

Several of the events are happening after the sun sets.  Lyn wants to go to them all and so steps will be taken to help keep her from melting down with anxiety.  Medication helps and Lyn can leave at any time if it becomes too much for her.

When I commented that she'll be exhausted by Monday, she sharply corrected me that she will not because she can handle it.  I'm tired just thinking about it.

Friday, December 5, 2014

We've Never Told Her

We've never told Lyn that I am the one who gets the Santa videos done for her.  The email alerting her to the presence of the video doesn't even come from me.  It comes from the Portable North Pole.  When she tells me about the video each year, I play along like I don't know anything about it.

Today, she started to tell her neighbor about the video from Santa.  When she started her tale, she led with "My sister does this for me."  Mom's jaw dropped.  Lyn started talking about the video and Santa, never mentioning me again.

Sometimes, she leaves me shaking my head.

Wednesday, December 3, 2014

Santa's Message

It is now December.  The Portable North Pole is back up and running and I can queue up a message for Lyn from Santa.  If you would like to see the message, feel free to view it here.

I love this service so much!  It brings her such excitement.

Mom had the camera ready when the video was sent to her.  Lyn has already watched it multiple times.

She's delighted and feeling confirmed that she's on the nice list.  She just grunted when she heard him ask her to try being more polite.  When the video was over for the second time, she called our Uncle and invited him to come over to view the message from Santa.

She's amazed that Santa sent her a message before she emailed him.  What she doesn't know is that I've already queued up a video from Santa for her birthday, reminding her to be good for the whole year.

Tuesday, December 2, 2014

80 Foot Tree

Lyn is so excited that she's been able to help decorate day hab for Christmas.  She has been telling me  for days about their giant Christmas tree which is 80 feet tall and took 45 boxes of lights to decorate.  She insists the majority of the work setting it up was done by her.

Of course, I just had to see this epic tree that has been the focus of her efforts and her conversation topic.

All 6 pre-lit feet of the tree are lovely!

Monday, December 1, 2014

Art as Memory Therapy

Art can stimulate an individual's memories even when they have Alzheimer's.  Apparently, this may be a result of the disease taking a long time before damaging the parietal lobe.  Berna Huebner found this connection with her mother Hilda Goldblatt Gorenstein who was the artist known as Hilgos.  After her mother was unable to communicate due to Alzheimer's, Berna found she could still communicate through art.

Berna ended up creating the Hilgos Foundation to encourage art as a therapy for individuals with memory impairment disorders.  The foundation grants funds to art students who work with Alzheimer's patients.  As a result of the work being done by the foundation and the students it supports, a documentary has been created called "I Remember Better When I Paint."

While the full movie is not yet available on-line, it is being shown on various PBS stations this fall.  Mom was able to catch it last week and found it to be a well-done film with implications for the care of Alzheimer's patients.

The film was premiered at Boston University which then hosted a panel discussion following the airing of the film.

If you are able to catch the full film, I encourage you to do so.  If not, perhaps these clips will give you some insight into the topic.

Additional Information: