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

Reprimands

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:




 

Friday, November 28, 2014

Making Bracelets

While Mom and Lyn visited, we made sure that any shopping we did was early in the week.  Lyn might have been able to cope with the Black Friday crowds, but neither Mom nor I have any interest in shopping on that day.  Early in the week, Lyn had said she wanted to get a bracelet for one of the employees at day hab who was kind to her.  I asked if she might like to make a bracelet instead.  She liked that idea.  We spent Friday afternoon making jewelry.


Lyn found the small beads and fine wires too small to manage well.  Fortunately, I had various cords and some larger wooden and plastic beads from which she could choose.  She selected what she wanted and strung the beads together.  I just finished the ends for her.  She was very happy with the results and proudly delivered the bracelet to its intended recipient.

I was just glad I had some supplies on hand to entertain her.

Thursday, November 27, 2014

Thanksgiving

Thanksgiving would not be complete without turkey.  Thanksgiving with Lyn would not be complete without her helping pick the carcass after dinner.  She worked hard and did her best.


I don't know if she'll help pick this year's turkey breast clean.  I'll find that out soon.

Thank you for sharing your thoughts and your time with us this past year.  We appreciate your words of support, the virtual hugs we've received and the stories you've shared in the comments or directly with us.  We are honored you take time out of your week to read the posts here at DBD and we are glad to be of any assistance when dementia touches someone in your life.

From my family to yours, we hope today is a day filled with good food and peaceful moments.  May you put your feet up and enjoy a good cup of tea or glass of wine.  May you smile and, at the end of the day, may you feel it was a day well spent.

Wednesday, November 26, 2014

Playtime

Lyn's always had an affinity for dogs.  She doesn't care for cats and the fact that they make her sneeze just adds to her desire to deal with them.  All of our dogs have been so responsive to Lyn throughout her life.  They know she's different and they meet her at the level that she can handle.

My dogs were no exception.  You'd expect my Bernese Mountain Dog Ian to sit and gently accept pets from Lyn and he did.  Berners are gentle giants who embody love.  It is a hairy kind of love that will lean into with all 100+ lbs of snuggle if you even hint at attention.  However, we weren't entirely sure how our American Bulldog, Magda, would do with Lyn.  Mags is much more enthusiastic and can tear through the yard like her tail's on fire when she gets excited.  She'll grab a toy and shake it so hard its ends will knock against her skull.  She's been stung by bees and shakes it off.  She's a level of intense that Ian just doesn't comprehend.  She's also a love.


Mags toned it all down while Lyn was here.  Even a game of tug was more like a slow dance.  Lyn was delighted and lavished both dogs with attention and they reciprocated.

Tuesday, November 25, 2014

Dinner was Her Choice

While Lyn was here, we made sure that the food offered at each meal was something we had confidence she would eat.  There was no curry or paprikas.  Mom would have enjoyed it but Lyn wouldn't have eaten it.  The goal during the week was to cater to her needs and make her as comfortable as possible.  For the most part, we succeeded.


She was happy that we even made spaghetti and garlic bread for her one night.  This picture makes me smile because I know she was happy even though her face looks grim.

If you care for someone with dementia, this is one of the changes that takes a long time to get used to seeing.  We expect that a person's expression, even at rest, should reflect their overall emotional state.  We rely on small visual clues provided by expressions to anticipate how a person will respond to us as we engage with them.  When there's a disconnect between the person's facial expressions and their emotional state, we're left guessing and can guess incorrectly.

I really have to acknowledge how Mom works with Lyn and how she's learned to not rely upon Lyn's facial expressions for an indicator of Lyn's emotions.  The truth is that Lyn doesn't always understand her own emotions anymore.  Tears come just as easily through joy as they do through anxiety or fatigue or any other emotion.  The key is just being willing to go along with whatever is being expressed in the moment.  Mom moves along with Lyn's emotions from moment to moment.  She deserves a medal for that.

Monday, November 24, 2014

A Year Ago

A year ago this week, Lyn and Mom made the journey from New Mexico to Virginia to spend the week with my family.  The week had its challenges, but we were all glad we did it.



Looking back, it is hard to believe it was just a year.  I would have argued that it was two or three years ago until I saw the dates on the pictures which have sat on my desktop ever since.  I've looked at them every time I access my computer.  At some point, I decided to use them for this week's blog.  (That decision was months ago.)

Her face has changed so much in this past year.  Her walk is more of a shuffle than it was even a year ago.  She's more argumentative and stumbles over her words more.  She's quick to cry and struggles with anxiety.  However, she remains essentially Lyn.

She can be drawn out on certain topics and can express excitement or laughter.  She still likes to engage with handsome men, particularly those in uniform.  She likes to help and be considered helpful even if she really is not.  She still loves Nikka with a passion and howls with laughter because of the dog's antics.

She is eagerly anticipating Christmas and a message from Santa.  She assures me that as soon as Santa's website is up, she's going to email him and tell him how good she's been because she put away her clean clothes this week.  Santa will send her a message soon.  The site I've used for the past few years is back up.  I'll do it again for her this year but I'm waiting until December.

I'm happy that magic and excitement is still there for her.


Thursday, November 20, 2014

Evening Anxiety

Earlier this week, Mom took Lyn out to a very early dinner.  They were at the restaurant by 4 pm and had not gone very far from home.  When they got home, they gave me a call and we chatted for a bit. About an hour later, Mom wrote me saying:

You know how someone hugs themselves when cold?  That's how she was sitting in her chair.

I asked if she was cold.  No.
I asked if she was sad that she didn't talk to you.  No.
I asked if she was tired.  No.

Then it dawned on me.  "Are you still a little anxious from being out after dark?"  "Yes and I don't like it."  The tears began.  I got up and hugged her.  I suggested she go take a bath since she's also tired.  Forget about Wheel of Fortune.

Wednesday, November 19, 2014

Jackpot

Somewhere along the way, an organization was established to understand the intersection between intellectual disabilities and dementia.  The organization is the National Task Group on Intellectual Disabilities and Dementia Practices.

Their primary report is called "My Thinker's Not Working."  They also have several committees and if you're interested you can join one.  I've just added my name into the "Friends of the NTG" to get updates about their work.

Their website is full of good information.  Go check it out!


Additional Information:

Dementia in Older Adults with Intellectual Disabilities - March 2009 (PDF)
     One of the Directors of the National Task Group has research cited in this survey.

Monday, November 17, 2014

Biding Time

Yesterday afternoon, Lyn couldn't understand why Mom said we would not Skype.  Mom told her that I was fighting a migraine.  Even when she explained it as "a bad headache," it was clear that she just didn't understand why I wasn't talking with them.  I suspected this was going to be the case and made sure to call them a little later in the afternoon than normal.  

Lyn had decided to wait for my call and worked on sorting beads to bide her time.  


She hadn't touched her beads much in recent months but dug them out about two weeks ago.  When she did, she decided that they had previously been sorted all wrong.  The blue beads should not be put near the purple beads.  She dumped them all out and started sorting them again.  As you can see, she's about halfway through the sort project.  

It is a useful way for her to bide her time.  After our call, she sat back down and picked up where she had left off, a little calmer for having had our conversation.

Thursday, November 13, 2014

Aspiration and Alzheimer's

After reading the obituary for Tommy from Car Talk, I've been thinking about complications from Alzheimer's which lead to death.

As we've discussed several times before, Alzheimer's is a terminal disease which causes the brain to die over an extended period of time.  It prevents the body from healing from disease or injury.  If the body goes long enough, organs can fail and the body may even have difficulty producing its new blood leading to anemia.  If the anemia is severe enough, the individual may need blood transfusions to increase the hemoglobin allowing oxygen to be increased in the body.  (I remember my husband's grandmother received several transfusions before she passed after having Alzheimer's for many years.)  Anemia is interesting because it may be a result of malnutrition which itself may be a result of the body no longer being able to properly absorb nutrients as a result of the Alzheimer's itself.

One of the other complications is aspiration.  When the individual is in the late stages of Alzheimer's they may have difficulty swallowing when eating or drinking.  As a result, food or liquid goes down the wrong pipe and an infection can result if it is not cleared.  The other danger is that the person may die as a result of choking.

We're seeing this a bit with Lyn in the amount of drool she's constantly wiping away.  While we hope she doesn't choke or aspirate, the risk is a reality.

Wednesday, November 12, 2014

A Chunk of Cake

Mom makes a great apple cake.  The cake has a couple of layers of apple slices coated in cinnamon and sugar.  Between the layers is a heavy and super moist cake that is, in my opinion, better than a pound cake.  Perhaps it is the bit of orange juice in the batter that makes the difference.  She bakes it in a tube pan and the cake goes without frosting or even a dusting of powdered sugar.  It just doesn't need it.

She made one yesterday.  She also made a mistake.  She used a bundt pan instead of the tube pan and the cake won't come out cleanly.  Fortunately, Lyn doesn't care and is perfectly content digging out a chunk of cake directly from the pan.


There's more than one way to get some cake and she's got it figured out.

Tuesday, November 11, 2014

Two Weeks = Changes

In the past two weeks, I spent very little time online after work.  I spent the evenings decompressing after my kids went to bed instead of researching Alzheimer's or writing a post here.  I also didn't call Mom very much.  Mom knows the situation here and was patient while I sorted things out to get my youngest the sense of security and additional that are currently needed.  We're sorted here for now and I'm engaged again with Lyn's care and the blog.

When I spoke with Mom and Lyn via Skype before they attended the wedding this weekend, I noticed a couple of changes.

First, the dementia face is way more pronounced with Lyn than it was last month.  You can see it in yesterday's posted picture.  There's no emotional engagement and her facial muscles are slack.  It is this expression that I most closely associate with dementia.  I see it in so many pictures of dementia patients from around the world.  It seems a universal trait of the more advanced stages.  This is the lack of expression that makes people think that the body is just a shell and the person they knew is gone.

The second change is the use of the phrase "You know."  Lyn has those two words on high repeat.  She is using it to fill space as she tries to connect the words she's just said with the though she's struggling to get out.  In one sentence in our call, I counted 8 repeats of "you know" before the sentence was terminated.

Both of these issues have been there for a bit.  However, they either got worse in the last two weeks, my hiatus made them more noticeable to me or both.

Monday, November 10, 2014

A Friend's Wedding

On Saturday, Mom and Lyn attended the wedding of a friend of the family.  They had been looking forward to it since they received the invitation.  It was an intimate affair with the couple's families and a small collection of friends.  I am honored that they thought to include us and regret I was unable to fly out to join them on their day.

Lyn spent a lot of time thinking about what she wanted to wear and eventually decided that the outfit she wore to a wedding a year ago is her go-to wedding attire.

Once they arrived and were seated, Lyn turned to Mom and told her she was "happy we came."  Fortunately, Mom had her camera out, ready to snap a few pictures and was able to capture Lyn's expression.


Don't let the expression fool you.  She really was happy to be there.  She enjoyed herself and was happy to help the couple celebrate their vows.  The small setting and the time of day all worked together to allow Mom and Lyn to participate without Lyn melting down due to anxiety.

We all wish the newly weds a lifetime of happiness together.  We are thrilled they have each other!

Monday, October 27, 2014

Two Week Hiatus

I'm taking a short, two week hiatus from Dementia Be Damned.

I've mentioned before that I've spent time as a foster parent.  I may even have mentioned that my youngest is my former foster child who we adopted when reunification with the birth family was no longer possible.  I believe I've noted similarities between my child's PTSD based behaviors and Lyn's anxiety driven behaviors.

What I've not previously posted is that my child has abuse related memories which are triggered by the seasons.  When you experience trauma and a memory is laid down by your amygdala, you may react to the sensory stimuli which you experienced when the event happened when you experience the stimuli again in the future.   Imagine if you were in a bad car accident.  You might find yourself having an anxiety attack when you next come to the intersection where the accident occurred.  You may find ways to avoid that intersection because you associate it with a terribly frightening moment and you may fear another accident in the same location.  Well, the same basic thing happens to abused children.  However, their sensory stimuli may associate the event with a season because they may not even know what a calendar is yet.  They may recognize that the very bad thing happened when the Christmas tree was up or that the very bad thing happened when the swimming pool was in use.

Late October to mid-November is the hardest time of the year for my youngest.  We're 6 years out from the events that made Fall a time of fear.  My child is having a harder time this year than last.  The good news is that kiddo does a great job at school even during this time of year.  The bad news is that it all comes out at home.  It is taking more from my husband and me than it has in a very long time.  Because of that, I am going to take this week and next week off from blogging.  I need to focus on my kids; particularly my youngest.

Thank you for your understanding and your patience.

Friday, October 24, 2014

Tending to Her Teeth

For the past couple of weeks, Mom has noticed that Lyn's teeth are not very clean after she returns from brushing them.  If Mom questions Lyn, Lyn gives a hostile response.  Mom would send her back and ask her to do it again.  Lyn's responses indicated that she was covering her inability.

After a few times, Mom realized that Lyn wasn't using her electric toothbrush.  When asked about it, Lyn told Mom that the toothbrush was making a sound and she didn't want to use it any more.  Mom checked the toothbrush and it was working fine.  "No!  That sound!" Lyn was emphatic and the sound was just the regular operation of the device.  Lyn no longer remembered how the toothbrush was supposed to sound and she was trying to manage with just a manual toothbrush.

Mom had a dental appointment scheduled this week and the doctor asked how Lyn is doing.  Mom told him of Lyn's reduced ability to bush her teeth since he last saw her a few months ago.  He went to his office and came back with an Oral B electric toothbrush with Smartguide.  The Smartguide will tell Lyn where to brush and how long to brush here.

The hope is that the automated guide will give her the additional assistance she needs.  There will come a time when it no longer works for her and Mom will have to brush her teeth for her.  However if this new toothbrush helps, then it will help her keep this small independence a little longer.


Thursday, October 23, 2014

Increase the Risk

In today's news, I read that contracting herpes simplex increases the risk of developing Alzheimer's in later life.  The most commonly recognized risk factors are age, genetics and family history.  However, I regularly read speculation on other interactions which may increase the risk of developing the disease.

The list now includes:


The good news is that aluminum has been removed from the list.

What this tells us is that Alzheimer's is a very complex disease involving multiple systems in the body.  Each one of those risk factors can be the focus of scientific investigation which may lead to another piece in the treatment puzzle. Some of the factors listed above can be mitigated by changes in how we care for ourselves.  Some we cannot change.  While I can work to reduce my BMI, changing my gender at a genetic level really isn't an option.




Wednesday, October 22, 2014

Respite Reduction

The sun is setting earlier in the day and Lyn's Sundowner's has come back with a vengeance.  On Monday, when her respite provider brought her home after dinner, Lyn was very upset.  There was nothing in particular that her respite provider or another person had done to upset her.  She was upset because she wasn't sure how to express her fear and anxiety that they were someplace unknown or that they were lost.  She just wanted to be home where she feels safe.  It was her respite provider's first real exposure to Sundowner's.

Mom and I had anticipated that this would happen and knew it was a matter of time.  Mom had suggested that we may need to reduce the number of evening hours Lyn is out with respite during the shortened days.  When Lyn came home Monday, Mom made the suggestion to her respite provider and the suggestion was readily accepted.  It is not that we want to reduce Lyn's time out and about.  It really comes down to asking if it is the right thing for her to be out if she's just going to be anxious and acting out of fear.  The Saturday respite hours will remain in place.

When Mom spoke with Lyn about it, she asked if Lyn knew what Sundowner's is.  Lyn did not.  Mom explained that when the sun sets the lights change and it seems like you are in a different place.  Lyn said "That's what I see every night."  Mom talked to Lyn a few minutes more and told her about the time that they were on the way home from dinner with Grandma many years ago and Grandma said "I hope you know where you're going."  Grandma didn't recognize that they were just a mile or two from home and thought they were in Santa Fe.  Lyn found the story funny though she didn't remember that event.  Mom explained that because Lyn gets anxious in the evenings, she didn't have to go out.  Lyn relaxed and said that was what she wanted.

Lyn has struggled with Sundowner's for years.  However, she's reacting to it much more strongly than she did even a year ago.  There are tears that are now accompanied with verbal lashing out and what can only be described as hatefulness.  It is all fear, really.  We don't want her to feel so unsafe that she physically lashes out.  She has not and we would like to avoid that.

We don't know if she will be able to resume more respite hours when the seasons turn and the days grow long again.  She might.  However, her brain changes over the course of 6 months is significant and we're at a point where it is very difficult to predict how much she can tolerate that far out in the future.  So, for now, her respite will be limited to daylight hours.

Monday, October 20, 2014

Reminiscence Therapy

Reminiscence therapy is the use of life histories to improve a person's psychological health.  Using pictures, video clips, objects or the written word, an individual can evoke a deep memory from an individual with dementia.  In order to help trigger the memory, the stimulants should be representative of or from the time of the individual's younger years.  For example, while you may not have pictures of the person as a child, pictures taken in the area where and from when they grew up may be familiar enough to cause a memory to surface.  During a therapeutic period, the person may not talk about the contents of the stimulus; but may discuss other topics which are connected emotionally for that person.

Reminiscence therapy benefits a person by getting them communicating and focusing on positive associations.  Making a connection and sharing their thoughts helps the individual feel valued.  The conversation itself can be interesting and funny and who doesn't like a good conversation?

Lyn has several photo albums that she used to go through fairly regularly.  While she doesn't much anymore, she will go get one and sit with you to look through it.  Looking through pictures of Albuquerque from the time of Lyn's life makes me realize that despite the growth of the city, much of it still looks the same or has enough of the same flavor that picking out the age of a picture can be a bit of a challenge.  Sometimes, we have to look to the type of photograph to help us determine the age of the image.

When you sit with Lyn and go over her photos, I find she doesn't make the connections that other dementia patients may be able to make.  For example, she can't tell you what movie was her childhood favorite or tell you about the time that Mom took us to see Star Wars when it was in the theaters.  A picture won't cause her to think of a meal, a song or even the seasons.  She might, on rare occasions, think about someone who is not pictured.

This difference is really nothing new with her.  While she enjoys music, I cannot remember a song that she felt a strong emotional connection.  I really think her inability to express connected memories is a result of how her memories were stored through out her entire life and not a result of her Alzheimer's.

Friday, October 17, 2014

Thursday, October 16, 2014

A Question of Guilt

At some point, Lyn will no longer be able to tend to her personal needs.  She won't be able to change her clothes, feed herself or clean herself.  She won't be able to get up and may become bedridden.  All of these changes are common symptoms of the late stages of Alzheimer's.  When that time comes, Lyn will need care providers who are able to lift her, turn her, feed her, clothe and clean her.  Because of Lyn's size, Mom may not be able to do it all herself.

A comment on yesterday's post raised this concern and the very real possibility that Lyn will need to be placed in a care home.  The goal is to keep Lyn in her home environment for as long as possible.  Her case managers have spoken of making in home renovations such as a walk-in tub to make her care as easy as possible for as long as possible.  While that goal guides decisions about Lyn's in-home care, the reality is that Lyn will very likely need full-time nursing care.  Mom and I are cognizant of this need and are emotionally prepared to make the decision when the time comes.

The comment posited that we may feel guilt in placing Lyn in a nursing home.  It raises a good question.  Will we?  Mom and I discussed this topic last night as a result of the comment.

When my Grandmother's care exceeded the capacity for her to be cared for in-home, Grandma was moved to a small private nursing home where she lived until her death.  She received very good care.   It was the right place for Grandma and we'll always appreciate my Aunt suggesting the facility.  In thinking back on that time, I don't remember there being expressions of guilt in moving Grandma to a nursing home.  Mom confirms that there was no sense of guilt felt or expressed.

As we continued the discussion, we found we were both expressing much of the same sentiments.  When Lyn is placed in a nursing facility, it will be with the recognition and knowledge that her care has exceeded what can be provided to her in the home.  We will make sure she's in a good facility and Mom anticipates visiting her regularly if not daily.  Neither of us expect that we'll feel guilt or question the decision to move Lyn because our goal is to provide her with the best care we can provide.  If that means that others have to do the heavy lifting then we line up the resources Lyn needs.

If we were just placing Lyn in a nursing home because we were tired of caring for her, then we'd have reason to feel guilt.  If a nursing home was a matter of convenience and not need, then we'd have reason to feel guilt.  Moving her when her care exceeds our abilities is no reason for guilt.

Mom and I both have participated in Alzheimer's support groups.  Mom has attended in real life as well as on-line.  I participate on-line only at this time.  Neither of us have understood the feelings of guilt that are commonly expressed by other participants.  When we hear of the lengths to which others have gone to avoid a nursing home placement, we see nothing to fault with their decision to finally place their loved one in a nursing home.  The decisions are not easily or lightly made.  While it may not be an easy decision for us too, I do believe we will accept the decision peacefully and not beat ourselves up over it.

Wednesday, October 15, 2014

Walking Away

In today's news, a famous British sportsman, Ian Botham gave an interview in which he talks about his father's dementia and his decision to stop visiting his father months before his father died.  He states that it was horrendous to see his father's diminished capacity and behavior changes as a result of Alzheimer's.  He asks that no one judges him unless they've been in his shoes.

Lyn's not violent.  She can be a brat.  Lyn's capacity is diminishing on a daily basis but she's not yet "a shell" of a person.  It is painful to see the changes some days.  Her care is sometimes a heavy burden for Mom.  The changes in her are definitely having an emotional impact on us all.

Mr. Botham's father passed in 2005.  It is my hope that the care we provide dementia patients has improved some as our understanding of their experiences is improved.  His father's violence would be traumatic to experience.  His father was in a nursing home and being tended to by the staff there.  However, I'm not sure, even then, that I could just walk away and have no more contact with my loved one.  The thought of that just seems like abandonment to me.

Tuesday, October 14, 2014

Petri Alzheimer's

Rudolph E Tanzi is the Director of the Genetics and Aging Research Unit at MassGeneral Institute for Neurodegenerative Disease at Massachusetts General Hospital.  He and his staff have been researching the causes of Alzheimer's Disease.  This week, they announced that they have developed the ability to grow human neurons with the genes for Alzheimer's in petri dishes.

The neurons organize themselves in the grid-like structure found in the brain.  Those neurons with the Alzheimer's genes also form the plaque tangles which are a hallmark indicator of the disease.  The ability to grow neurons in a petri dish will hopefully allow researchers to test potential drugs for treating Alzheimer's more quickly.

Dr. Tanzi and his team are not the only ones growing neurons in petri dishes.  His team at MassGeneral worked with embryonic stem cells which have the ability to become any cell needed.  However, a team of stem cell scientists led by Tracy Young-Pearse have converted skin stem cells from individuals with early on-set Alzheimer's into neurons and grown them in petri dishes as well.  Both Tanzi and Young-Pearse teach at Harvard in addition to directing their respective labs.

The goal to create collections of human neurons to directly study or use in drug testing is not a new concept and has been under work for several years.  In 2012, the University of California, San Diego team led by Larry Goldstein had announced they had succeeded in converting skin cells to neurons for petri growth.  From how heavily Tanzi's team is receiving coverage this week, you'd be hard pressed to know that this announcement is not the first of its kind.

Will Tanzi's approach be substantively different or a game changer in ways that the findings by the labs run by Young-Pearse or Goldstein have not?  Only time will tell.


Monday, October 13, 2014

Clothing Issues

For the past couple of weeks, we've noticed that Lyn wants to wear the same thing again and again.  If Mom doesn't intervene, Lyn will wear the same pajamas every single night and the same clothing each day.  She gets irritated if Mom tells her to change into a fresh set of clothes.  Fortunately, if Mom can convince Lyn to put the dirty clothes in the hamper, she'll leave them there and get a different set.  However, each day, she asks about the set she wants, checking to see if they are available for use.

This is not unusual with Alzheimer's.  Making a decision is hard.  Patients will revert to the familiar as the easiest option when choices are at hand.

This is not a surprising change to see in Lyn.  At this point, she's still cooperative with changing even if she's not happy about it.  Additionally, she's still able to get dressed on her own for the most part.  She'll get upset if her bra strap is twisted as she puts it on.  When that happens, she asks Mom to help her because "It is faded!"  She now uses "faded" instead of "twisted."  We're honestly glad that she can still put on her own bra and get the rest of her clothes on independently.  We'll take that for as long as it lasts.

Thursday, October 9, 2014

Hilarity for Charity

Next Friday night, Seth Rogan will be hosting his third annual Hilarity for Charity event.  Hilarity for Charity is a fundraising comedy concert which supports the Alzheimer's Association.   Seth and his friends in the entertainment world put on a big show.  This year's theme is the Prom.  There's also an online fundraising component with Omaze this year.

If you enjoy Seth Rogan's work, you may want to check out some of the Hilarity for Charity videos.  While you're at it, consider supporting your preferred Alzheimer's charity.

Wednesday, October 8, 2014

New Glasses

Her new glasses have arrived and she's happy.


There are days when any smile, no matter the reason, is worth the effort.

Tuesday, October 7, 2014

The Nobel and Your Internal GPS

In 1971, scientist John O'Keefe and his student Jonathan Dostrovsky discovered neurons in the hippocampus which fire in connection to a specific location and called them place cells.  In 2005, Edvard Moser and May-Britt Moser discovered another type of spatial cell in the entorhinal cortex which they named grid cells.  Grid cells allow the body to know its place in space.  Together with the place cells, they allow the brain to maintain an internal map of where your body is in Euclidian space.

Essentially, your brain has its own GPS which maps out the environment around you.  The work by these scientists answers the question of how we can successfully move through our environment in all its complexity.  Their work has been recognized by the Nobel committee who awarded them the 2014 Nobel Prize for physiology or medicine.

So how is this research connected to Alzheimer's?  Individuals with Alzheimer's or other forms of dementia may not recognize where they are even if they are in their normal environment.  We see this pretty clearly in Sundowning.  The light changes and the environment looks different.  The individual doesn't recognize where they are and exhibits increasing anxiety.  As the disease progresses, the individual can literally become lost when they don't recognize the space around them.  They may wander away because they're looking for home.  If we can understand how the brain's GPS is supposed to work, it may help us understand what is happening when it no longer works.

Amazing work!

Monday, October 6, 2014

Craft Project Pride

One of the activities that you can provide to an individual with Alzheimer's is a selection of the pvc pipes and connectors.  The individual can put them together in any formation that they want.  Later, you can give them the creation and ask them to take the pieces apart.  It is a good activity because their hands are in use as they are working to build or take apart the connections.  For someone with advanced Alzheimer's this also allows them to feel valued because they're helping you with a task.

At day hab this week, Lyn participated in a craft project that used pvc pipes and pvc pipe connectors. She worked with one of the staff to use the components to make something more permanent than the activity described above.  She was so proud of her work.  She was able to bring it home and decided she needed to give it as a gift to our Uncle.

Our Uncle graciously accepted the gift.  He promised to take it him and use it right away.  You can see how happy the exchange made her.


Have you guessed what it is yet?  I'm am glad she told me because otherwise I would never have guessed.  She made a sprinkler for him to use when watering his lawn.

Friday, October 3, 2014

Failing Eyesight

Lyn had here annual eye exam earlier this week.  Last year, she ended up in bifocals.  This year, the news was mixed.  Her left eye has shows very little visual degradation while her right shows substantial degradation.

Lyn was cooperative and wanting to be helpful during the exam.  However, she would always say the last option that was presented to her when asked if one view was better than another.  Mom noted that Lyn's highly suggestible and the approach for the exam was changed to rule out Lyn's verbal responses.

A new pair of glasses has been ordered and should be in her hands in a week.  She wanted a set of larger frames.  I wonder if she's thinking that a larger frame will improve her vision.  I chuckle at Mom's description of Lyn trying to pick out frames and consistently being drawn to the most expensive pairs.  Each item she chose was from a luxury brand like Coach or Armani.  This is pretty consistent for Lyn and I'm glad to see that hasn't changed yet.

No matter how much I read about Alzheimer's, I still find new information.  I was aware of the degradation of a person's vision and how you can give yourself a feel for it by holding your hands up to your eyes as if they were binoculars.  I was unaware of the uneven loss of eyesight resulting in a person's blindness in one eye and highly constricted vision in the other.  I don't think Lyn's completely blind in her right eye yet.  However, it appears she's going that way.  The video below is a good and quick explanation of how a person with dementia is impacted by a reduced visual field.  Take a look.


Tuesday, September 30, 2014

Velcro

In case you were wondering, and I know you were, Nikka is made of velcro.


When Lyn came home from day hab, Nikka greeted her by spinning around the room.  This is her normal approach to greeting my sister.  Lyn sat down and the velcro between them took hold.  They stayed like this for over a half hour.  

Lyn may not be smiling, but she is thrilled by Nikka's response to her and just adores the dog.  It is a good thing because the feeling is so clearly mutual.


Monday, September 29, 2014

Your Correspondent

"We're Entering the Age of Alzheimer's" is an article that crawled across my desk just last week.  It was published earlier in the month.  The article combines a personal account from the perspective of the author who refers to himself as "your correspondent" along with the statistics surrounding Alzheimer's and the anticipated impact it will have on the human population.

It is a tough article to read for a number of reasons.  There are times when I want to argue with the author's word choice, but I can't.  Despite my role in Lyn's care, I don't have the direct, extended one-on-one care experience to quibble with his words.  The author's points are salient and across to me as brutal honesty; not an attempt to offend or belittle.  That being said, the article is well worth reading.

Friday, September 26, 2014

Justin Has Passed

At the end of August, we learned about Justin, an individual with Down's Syndrome who was participating in an Alzheimer's study.  I was saddened last night to learn that Justin had passed away in his sleep this week.

May he be remembered well and with love.

Thursday, September 25, 2014

A Can and A Dog

Lyn wanted to show her craft project from day hab.  It is a dog on a can.  She's very pleased with it.


Lyn wanted to share with me the instructions for how to make one of these.  They are as follows:

1. You need a purple can.
2. You need someone to use a hot glue gun.
3.  If you have that then you can make one too.

I don't know why the can has to be purple but she insists.

Wednesday, September 24, 2014

Loosing Weight

Lyn's weight has been high for years.  We all struggle with our weight.  Mom convinced Lyn to make some small changes such as having no more than one soda a day and she lost some weight.  We've praised her lavishly for being able to loose some weight.  However, the weight loss has increased and we think it is not about dietary or exercise changes.  We think it is the Alzheimer's.

Weight loss is actually associated with Alzheimer's.  This association has been known of since at least the late 1990s when a study reveals that weight loss "is a predictor of mortality" for Alzheimer's patients and that the "risk of weight loss tends to increase with severity and progression" of the disease.  Two years later, there were several hypothesis for why the patients shed weight but no definitive answers.  A study released this year indicates that the build up of amyloid-beta interferes with the hypothalamus's ability to respond to the hormone leptin.

Lyn's visit to the doctor for the current infection indicates that she's lost 7 lbs since her last visit 2 weeks ago.  Prior to that, I believe the weight loss from her physical in August indicated 12 lbs lost.  In short, she's lost 19 lbs in under 2 months.  The soda reduction was months ago.  She's not exercising more either.  Her appetite has dropped noticeably however and that is also part of the disease.

Mom and I are concerned because the weight dropping quickly can increase the chances of Lyn taking a fall.  It also reduces the body's ability to fight infections.

Tuesday, September 23, 2014

Updating the Diagnosis

When Lyn was first undergoing the process to diagnose what is happening to her, the physician listed the diagnosis as early on-set dementia.  Mom has been thinking about this diagnosis for some time and feels that it is too broad.  Dementia is the collection of symptoms resulting from a number of degenerative neurological conditions.  The list of dementia causing conditions includes Parkinson Disease, Vascular Dementia, Fronto-temporal Dementia, Dementia with Lewy Bodies and Alzheimer's.

Graphic courtesy of the Alzheimer's Organization Alz.org

Lyn's symptoms match Alzheimer's; not any of the others.  Even the last evaluation from a neurologist is in agreement.  As a result, Mom asked Lyn's physician to change the diagnosis from dementia to Alzheimer's.  Her physician thought about it for a few minutes and then agreed, making the change right then.

This really doesn't change anything about Lyn's care.  It just makes the diagnosis as specific and as accurate as possible so that the whole team can speak to the real situation at hand.

Monday, September 22, 2014

A Tough Weekend

On Friday, Lyn came down with a massive sinus infection and another ear infection.  The previous infection just two weeks ago had been cleared up and this is in her other ear.  It amazes us how quickly the infections hit her these days.  I really wonder if she's just not aware of the infection building.

She wasn't up for going to day hab and needed to be seen by her doctor that day.  Mom got her in to be seen.  The diagnosis was confirmed and a prescription was ordered.  By the time that Mom got them home, Lyn was ready to fold up.  She did and slept several hours.

Mom has kept Lyn home all weekend and Lyn's spent the weekend sleeping.  Despite being on the needed medication, Lyn's not bouncing back and it looks like she's not going to be up to going to day hab tomorrow.  She's been sleeping until almost 8 each morning, napping from 9 am until at least 11 am, barely eating a lunch and then napping again for several more hours in the afternoon.  She's up for only an hour or two and then bathes and returns to bed for the night.  Mom has commented that Lyn's sleeping on a similar schedule to how she slept as an infant.  Neither of us can recall a time when she's slept more than she's been awake.

Mom cancelled Lyn's speech therapy session for today.   As of Sunday night, she wasn't really showing much improvement and Mom decided to get her seen again by the doctor today.  Hopefully, she'll be back on her feet in a day or two.

Friday, September 19, 2014

Happy

Some days, you get a song in your head and it just won't leave.  When Mom sent me the picture of Lyn after day hab, I heard Pharrell's much played song "Happy" and I wanted to dance with her.


One of the staff at day hab had curled her hair and pulled it into an up-do for her.  She was delighted as you can see.

So, since it is Friday and she's happy, I suggest we all dance and enjoy a moment of happiness.  To that end, I share with you my favorite video set to Pharrell's song.  I hope you enjoy it.  I love it.


Happy Friday!

Thursday, September 18, 2014

Not Big Hungry

Lyn's verbal skills have slipped since I saw her just last month.  She's transposing words more frequently.  She knows what she's wanting to say and the words she's saying make sense to her.  However, it is taking a few minutes to figure out what she means more.

Earlier this week, she announced she was ready for dinner by saying "I'm getting hungry but not big hungry."  When she was finished, she stated "I done eaten finish all."  Mom tries to not openly laugh because it upsets Lyn but sometimes, her speech pattern is amusing.

During an episode of Maury, she said very emphatically "That's totally inappropriated!"  Mom struggled to not laugh at that one.

When she was 7, she was only about 2 years into verbal communication and she did much the same thing.  I remember serving as her interpreter whenever we were together which was constantly unless we were in school.  Even Mom needed me to translate.  Now, I suspect Mom will have to translate for me because she's with Lyn much more than anyone else.

Wednesday, September 17, 2014

Changing TV Habits

Lyn's television viewing seems to be changing.  Mom and I are a bit amused and a bit confused by it.

Lyn has long watched Wheel of Fortune, Jeopardy and PBR.  She doesn't watch PBR much any more.      She also has long watched Cops.  I never realized before, but I think she likes the tension and drama. Her newest television favorite is The Maury Povich Show.  She now asks Mom if they can watch the show because she wants "to see if he's the baby daddy."

She watches and comments on the guests' attire.  She doesn't approve of the big earrings or revealing clothing.  She comments on the fighting.  She disapproves of fighting and bad words.  She comments on the twerking.  She disapproves of it too.

She cannot keep track of the relationships or the drama being explained.  Mom sees her expression go slack when the people are seated and talking.  She just responds to the high action and drama.  I think that's also why she continues watching Cops.  She doesn't have to follow a plot; just provide color commentary to the action.

We don't know how she's come to know of the Maury show.  However, it makes us laugh that she enjoys it.