Saturday, March 31, 2012

Negotiating with Lyn

Late last year, I decided to teach myself how to crochet.  As a result of diving into this new hobby, I find I've got to have something in my hands during quite times.  If I have to take a family member to an appointment, I take a crochet project with me.   If I'm watching tv in the evening, I've got a project in my lap.  If I'm on the phone or in front of the computer for a Skype conversation, I have picked up the yarn and my hook.  Unfortunately, I find that I need a couple of projects in flight at any time.  Currently, I seem to average three at a time.

My new hobby has become a regular touchpoint in our converations.  Lyn asks what I'm working on because she sees me look down towards my yarn or sees me pull more yarn from the skein.  I'll hold up my project and show her and Mom what I'm making or how much progress I've made on one of my longer projects. 
About two months ago, Lyn told me that I needed to make her some mittens.  She wanted them to be green and another color.  I had some self-striping yard in green and lavender.  I quickly grabbed it from my stash and showed it to her.  She decided she liked it and gave me permission to get started.  I was able to work the mittens up for her pretty quickly and sent them off to her. 

Lyn's mittens
Given how she's rejected other gifts from me, I wasn't sure if she would like the mittens.   Fortunately, she likes them and has been caught admiring them many times.

During this week's Skype conversation, Lyn once again demonstrated her mastery of subtly dropping a hint that she wants something.  She saw I had a project in my hands and asked what I was working on.  I raised the head of an amigurumi bunny into view and told her I am making a little stuffed bunny doll for my niece.

I joked with Mom that I knew not to send it to her because it is purple.  Lyn quietly said "You could send it to me.  I like purple."  I was focused on Mom and the comment slipped by me until Mom asked if I heard the background comment.  I asked Lyn to repeat her comment and her expression was a bit smug as she said it again.  I don't have enough purple for a second bunny.  I reached behind me and picked up a skein of light green to show her.  I asked if she would accept a green bunny instead. 

She magnamously accepted my offering.

Friday, March 30, 2012

Virtual Dementia Tour

At the end of last week, I learned about the Virtual Dementia Tour, an experiental tool kit that helps you understand the challenges faced by those with dementia.  Kendal at Lexington, a continuing care retirement community in Virginia has recently been able to add the Virtual Dementia Tour to their dementia education resources. 

The Virtual Dementia Tour looks like an amazing and emotional experience.  I am hoping I can arrange to experience it myself.  Would you do it?

Additional Information:

Thursday, March 29, 2012


Last week, Lyn was evaluated on an oximeter overnight.  Her physician was concerned at the increased fatigue.  The results of the test were not good.  In fact, they were so concerning that the physician has taken action and has Lyn hooked up to oxygen while she sleeps now.

Oxygen requires signs

A healthy person at sea level will have an oxygen saturation in their blood of 96% to 99%.  At a saturation of 90%, a person has insufficient oxygen in their blood (hypoxemia).  Apparently, while she sleeps, her level is dropping to 38%. 

There are a number of causes for hypoxemia including anemia, high altitude and sleep apnea.  Lyn's previous blood work does not indicate anemia.  While she does live above a mile in elevation, she's done so the vast majority of her life.  So, the hypoxemia would not be a result of a significant or sudden altitude change as you may see with mountain climbers.  While they have not yet ruled out all the other causes for the drop, sleep apnea is the most logical reason and one the doctor wishes to pursue. 

Lyn will not cooperate with a sleep study.  She will not sleep over at anyone's home any longer; not even at the home of a local relative who she loves deeply.  We have asked if a mobile sleep study is an option that can be done in the home.  The physician is working to get Lyn in with a sleep specialist who would best be able to line up a mobile sleep study if one is available in their area. In the meantime, the physician has ordered that Lyn wear a nasal cannula and receive oxygen each night while she sleeps. 

The oxygen use began on Tuesday.  Lyn was very upset and cried off and on all day about it.  The gentleman who delivered the oxygen and got them set up was very kind.  He showed them how to use it and reviewed it several times with Lyn.  It is something new and Lyn finds it very hard.  Fortunately, Mom's there to oversee that she's got it seated and turned on properly.

Tuesday night was also the first night they used the baby monitor.  It was a long night for Mom.  She's not used to hearing all of Lyn's nocturnal noises.  However, Mom was able to respond when Lyn said her name and helped get Lyn resettled in the middle of the night. 

Wednesday morning dawned and Lyn was up shortly after the sun.  She woke up on her own and was chipper and happy.

Wednesday, March 28, 2012

Dementia News Update

Two different labs have found that Alzheimer's Disease spreads neuron to neuron, answering how the disease spreads across the brain.

Another scientist offers up a computer model to predict the spread of the disease.

Criteria for a diagnosis of Mild Cognitive Decline have been modified causing some controversy.

Cancer survivors appear to have a 33% decreased risk for Alzheimer's Disease when compared to people who have not had cancer.

Tuesday, March 27, 2012

Mom's Idea

My sister has stated a couple of times that she's having nightmares.  Unfortunately, she says she's too afraid to get out of bed when it happens to get Mom's help or solace.  Lyn has a nightlight in her room, but I'm sure her room looks different enough from daylight or lamplight that she's probably not even reaching for her lamp.   Mom suggested that they get a baby monitor and set it up in their rooms.  That way, if Lyn does wake due to nightmares during the night, Mom will be able to hear her and respond.  

I'm of two minds on this suggestion.  My initial reaction was that it was a great idea.  I still think it is and I support Mom doing this.  It is absolutely important that anyone who has a nightmare finds solace and is able to go back to sleep.  Disrupted sleep has consequences for the healthy brain.  I wouldn't be surprised if it has bigger consequences on the brain already struggling with dementia.

Therein lies my conundrum.  Will Mom's sleep be significantly disturbed by Lyn through the baby monitor?  Will Lyn turn out to be having frequent nightmares or will this be a smaller impact of once or twice a week?  It is hard to say until we know what pattern Lyn really is experiencing and that won't be known unless there's a monitor in the room.

Ultimately, it is Mom's decision as she's the primary care giver.  She would have the ability to turn it off on a night that she needs sleep if it comes to that.

Monday, March 26, 2012

PBR and Lyn

As previously mentioned, Lyn attended the Ty Murray Invitational PBR event at The Pit on Sunday.

Lyn and Mom arrived an hour before the event started.  There was such a crowd that The Pit opened their doors earlier than scheduled to let people in.  She bought a program and was thrilled when a bull rider signed the back of her shirt as well as her program.  She was so excited that she convinced Mom to call me right then.

I could hear the noise of the crowd around her.  She stressed that she paid "only $10 for the program!"  When I asked her if there were cowboys around, she giggled a "Yes!"  I pushed a little and asked if there were cute cowboys around.  I could nearly feel her blush.  She's always been an admirer of cute cowboys and the dementia has not dimmed that one bit.

Mom kept the conversation short because they still needed to find their seats.  They promised to call when they got home after the event.  When I spoke to them later in the evening, Lyn was still hyped up.  Mom had bought her a PBR baseball hat with Stars and Stripes flames on the bill.  She rarely wears a hat, but clearly she convinced Mom that it was a necessary purchase.

She told us about the new bull named Plumber's Butt who apparently is taking over for the retired Booger Butt.  My eldest fell over laughing at the name but Aunt Lyn thought the bull was pretty.  She talked about the riders who got injured and that the crowd would clap for him to show him they hoped he feels better.

She had a wonderful time and that's what the day was about.

Sunday, March 25, 2012

Bulls and Bowling

Just a quick note today.  Mom is taking Lyn to watch the PBR show.  Lyn's promised to take her camera and get us pictures of the bull riders.

Two week have passed since I last posted Lyn's bowling scores.  Her first game has been consistent at 125 for the past two games.  Her second game seems to return a lower score than her first most weeks.

Update:  Lyn called me from The Pit.  She's incredibly excited because she was able to buy a program and one of the bull riders autographed her shirt.

Saturday, March 24, 2012

Miss Sunshine

The ladies at day hab have started calling Lyn "Miss Sunshine."  When Lyn arrives each day, she goes to each person to say "Good morning" and to offer a tidbit of advice.  

She always has advice.  She's always willing to share her advice and you don't even have to ask for it.  She's advised me on everything from my college work to car care to my marriage and my children over the years.  If something's fixed, she knows how to fix it.  If someone's ill, she knows what is needed to bring them back into health.  

It doesn't matter if she's right or not.  What matters is that she's engaged in the discussion and she's expressing her care and concern for you, me, and the universe in general.  Her advice may be declared in a loud and insistent voice, but it comes from a place of love.  In that place of love, she is absolutely certain that she's giving you sound direction.  She is confident that you need the guidance and that she's the right person to give it.

Advising me to keep up
The ladies at day hab see this in Lyn.  In an email to Mom, they wrote "She really is a blessing! She will always be welcomed with us! They say not to love the those we serve but is that not the purpose of serving??"

Love.  They get it.  Service is love.  The act of giving of yourself and of helping another is an act of love.  That's what Lyn tries to do with her advice and that's what the ladies offer her in return.  It is love that causes one person to care for another. 

Hearing her called "Miss Sunshine" makes me smile at the sweetness of it.  

To the ladies at Lyn's day hab, if you are reading this, thank you for your kindness and your service.

Friday, March 23, 2012

Feeding the Ducks

Did you know that Albuquerque has a beach?  It does!  Seriously.  You can stop laughing, now.

Tingley Beach has been a minor attraction in the city for years.  It is a series of ponds built in the 1930's which allow people to fish and sail model boats.  Swimming used to be allowed, but that option was removed in the 1950's.  It is now part of the BioPark and is connected to the city's hiking and bike trails.

The water and the stock of fish have attracted ducks and geese to take up residence around Tingley Beach. The ducks and geese have grown used to being fed by visitors to the park.

I remember one time, Mom suggested we drive along the beach to short-cut our way to Grandma's.  It ended up not being a time short-cut by any means.  There were so many birds that we really couldn't drive forward.  People used to feed the birds from their cars and so the birds would surround your vehicle as you drove up.  It took several long, noisy minutes for the birds to realize we weren't feeding them and decide to move on to the next car behind us.

Feeding Geese in Montana
Lyn has long enjoyed feeding the birds.  She was introduced to the practice by Grandma, if I remember correctly.  A couple times a year, she asks to go someplace, usually Tingly Beach, to feed them.  If you're ever there and you happen to spot her, do say "Hello."  She's always happy to chat.

Thursday, March 22, 2012

She Quit

The writing was on the wall.  Lyn's respite provider had started canceling their time together at the last minute.  She has given her two week notice and will be terminating her association with Lyn.  She states that her reasons are that Lyn is tired after day hab and that Lyn has no new ideas of things to do.  She has already lined up another client to take Lyn's hours. 

Lyn knows her respite provider is leaving.  She doesn't know why.  Lyn is happy to do the same activities over and over.  Consistency allows her to anticipate and understand where she is and what's happening.

This is going to be hard on Lyn.  Very hard.  She's already cried and the ladies at day hab are concerned because "their sunshine" is upset.  They've met with Mom to see if there is anything they can do to help ease her transition.  Even this small act of kindness is appreciated.

Wednesday, March 21, 2012

1 in 7

Did you know that one in seven people with Alzheimer's disease live alone?  When you factor in the other causes of dementia, that number goes up to as much as one in four.

While some families may choose to have their family member with Alzheimer's disease or other dementia continue living alone, I wonder how many of the rest are living alone because they have no family member or friend to serve as a care giver.  Being a care giver is a tremendous burden to place upon someone if they are unwilling or unable to meet the demands of the work it entails.

I am extremely thankful that my sister is receiving the care she needs.  My mother is a gift beyond compare.

Additional Information:
Alzheimer's Association's 2012 Facts and Figures
Alzheimer's Society (UK) - Living Alone
Living Alone with Dementia
Living Alone with Dementia: Lack of Awareness Adds to Functional and Cognitive Vulnerabilities
Dementia Live Alone

Tuesday, March 20, 2012

Cherry Blossoms

Today is the start of the National Cherry Blossom Festival.  Lyn cannot travel any longer to attend.  So, I thought I would bring the festival to her in today's post.

In 1912, Japan gave Washington, DC a gift of 3,000 cherry trees after a 1910 batch died due to disease.  In 1915, the US reciprocated with a gift of flowering dogwood trees.

The city is stunning on a normal day.  On a day when the blossoms are in full bloom, it will enchant you.

  Even Lyn enjoyed being in the city to see the trees.

Monday, March 19, 2012

Making Decisions is Hard

Mom put down her thoughts about Lyn's struggle with decision making Friday afternoon:

For some, reason Lyn was very fragile this afternoon.  I think it was a combination of being tired, allergies and a worry about tonight's activities.  Since there was no Merry Makers, the respite provider said perhaps they, she, Lyn & another client, would go eat then to a movie.  While she goes to a movie once week with day hab, it is not a favorite activity.  I asked what movie she saw but she didn't remember the name or what it was about.  I asked her if she liked it and she said she did.  

I think she began thinking about another movie tonight and she couldn't handle that.  I told her she needed to tell her respite provider she didn't want to go to a movie and she said she would.  I doubt she would be able to do that because she wants to please everyone.  I said all she had to do was speak up and no one would be mad at her.  "Yes, I know."  But she wouldn't and I know that.  

The tears started flowing while were were on the Interstate.  I asked what was wrong.  Then, I asked if she wanted to stay home tonight.  "Yes"  She is tired but it's more than just that.  I don't think she's able to really tell me what's wrong and is open to suggestions.  

It doesn't matter really what is upsetting her because my job is to protect her at all costs.  If that means keeping her home I'll do that.  If it means suggesting she's tired, I'll do that.  If it means suggesting she just play with Nikka, I will do that as I did.  I see the relief when I make such suggestions because she isn't able to make decisions as she previously did.  She can make decisions if they are very simple, rudimentary.  

It seems to me that in this area she has regressed so very much.  She seems relieved when I make these decisions but she's not aware of this change.  Nor would she be.  Yet, herein lies the contradiction of your sister.  She is still able to tell someone what to do if they aren't feeling good or she can tell someone the best way to clean a carpet that a dog has stained.  But she can't tell someone if she doesn't want to do what they suggest.

Sunday, March 18, 2012

It is Complicated

There was a guy my sister dated off and on for several years.  He was higher functioning than her but was in the same disability waiver program and attended a number of the same social activities as Lyn.  He could drive but not live alone.  He has bipolar disorder, has attempted suicide and is highly manipulative.  He broke her heart.  Repeatedly.

Lyn's relationship with this guy was one of the more complicated times of her life.  She genuinely loved him but he was unstable and bad for her.  She was an adult and there really wasn't much Mom could do to prevent the relationship.  Mom was there to help Lyn pick up the pieces each time this guy broke up with her.  She was there to try and warn Lyn to not get back in a relationship whenever he would come back around.

It has been at least two years since their last break up.  In this time, there has been no significant contact.  They may have run into each other at Merry Makers, the Friday night social group, but she's staunchly ignored him.

He called towards the end of the week.  Lyn wasn't available and Mom could honestly tell him she was not there to come to the phone.  Lyn wasn't confronted with having to choose to speak to him or waive off.  Mom did let Lyn know that he called when she was out.  Lyn got mad and Mom quickly changed the subject.  Nothing more was said and Mom thought the issue was past.

It wasn't.  Friday afternoon saw a round of tears and one of the things she said was that she had a bad dream about him the night before.  She was tired and upset.  So much so that she cancelled her plans to go out.

Saturday, March 17, 2012

Doctor's Visit

After Lyn's recent days of frustrations, Mom scheduled Lyn for an appointment with her physician again.  The physician checked Lyn over, gave her a bit of a cognitive evaluation and reviewed the neuro-psych results from the fall with them.  The physician was shocked that the clinician refused to state that Lyn has dementia "because she can still engage in conversation."  She believes that dementia is the correct diagnosis and this week's visit just confirmed it for her.

During the visit, Lyn told the physician about getting turned around at the casino four times.  The physician noted the frequency and that it was just being blurted out like a non-sequiter.  Lyn also told her about the medical alert bracelet which has been ordered.  The physician felt that was an excellent idea.  Lyn struggled with the date, time, and names of the state and city in which they reside.  Mom and the physician both praised Lyn for her efforts and good answers.  When the physician asked Lyn to draw a house, something she's successfully done previously, the physician sketched one out first to demonstrated.  Lyn responded with "No.  I don't like that shape."  The physician told Lyn to draw what she wanted and Lyn drew a triangle.  The triangle was the house for Lyn.

The physician is concerned about the frustration and emotional outbursts.  She's prescribed a med that is only to be used when she's having a tough time.  Hopefully, it will help.

The physician is also concerned about the marked increase in sleeping.  An oximetry test has been ordered for Monday night.  An oximeter will be delivered to the house during the day and Lyn will need to sleep with a probe on her finger.  It will record her blood oxygen levels and pulse through the night to see if she's getting enough oxygen.

The physician and Mom discussed the neuro-psych evaluation and decided that it is probably too soon for the tests to be done again.  Even though the results will be a benchmark for 2 years, the physician believes they'll need to be repeated within the year.

Friday, March 16, 2012

A Beautiful Butterfly

Some days, I just need to see a real smile from Lyn.  I hope you don't mind.

I love that she's jumps right in to fun stuff like getting her face painted.

Thursday, March 15, 2012

The Record Repeats

During Sunday's Skype call, Lyn told me about the time she got turned around at the casino.  She recounted the story like she had never told me and like it happened the day before. 

Mom closed her eyes while Lyn was regaling me with her tale.  I could see the pain in her face.  Lyn could not see Mom's face because she was speaking over Mom's shoulder to me.  Even if she could see it, I'm not sure she would pick up on it.

Getting turned around has been a big topic of discussion for Lyn since it happened.  I bet she's told everyone at this point, possibly repeatedly. 

Her verbal interactions, her conversations are definitely becomming more stilted and repetitive. 

On the plus side, Mom's given her something new to focus on and talk about.  They have tickets to see the bullriders with the PBR later this month.  Lyn's so excited she's about to pop.  When I asked her what she's going to do with all those cowboys she said "Take their pictures!" 

Wednesday, March 14, 2012

Medical Alert

When Lyn leaves the house, she is accompanied by either Mom or her respite provider.  I cannot remember a time since we returned from Montana that Lyn has gone somewhere by herself.  Mom has signed Lyn up for the Silver Alert program in case Lyn wanders off on her own.  However, a thought popped into mind when I got an email earlier this week; should Lyn be wearing a piece of medical alert jewlery?

One of my medical alert bracelets
The Silver Alert program would provide Lyn with a GPS bracelet if she were to wander off and be found again.  However, what would happen if she was unable to speak for herself when she was found?  Would it make a difference to the first responders to know that she has dementia?  Would a piece of medical alert jewlery with her name, phone number and "Intellectually disabled" or "Dementia" help?

With those thoughts in mind, I called Mom and pitched the idea to her.  She liked the idea right away.  The concern we both have is not what the jewlery should say; but if we could get Lyn to wear it and keep it on.  Mom decided to tackle that while I got in touch with our brother who is a fire fighter and paramedic.  When I tossed the idea to him, he responded enthusiatically, saying that he's never seen an individual with dementia wearing a medical alert bracelet or necklace which identifies their altered mental functioning.  He believes it would be very beneficial if Lyn were ever in a situation which necessitated assistance from people she doesn't know.

When the idea was posed to Lyn, Mom reminded her that I wear a medical alert bracelet every day.  Mom pointed out that when we get excited or upset, it sometimes makes it hard or us to think clearly or speak clearly.  Lyn agreed and liked the idea.  She particularly liked that the jewlery could have red on it.  My brother and I debated the benefits of a necklace, a set of dogtags or a bracelet.  We agreed that she would take of the necklace or dogtags and could get seperated from it, even if she kept it in her purse.  She does not have the manual dexterity to remove a bracelet on her own unless it slips over her hand. 

So, it was agreed that Lyn will have a medical alert bracelet.   Lyn likes this idea.  While Mom went to get the tape measure, Lyn said "I just want to say thank you for thinking about this and how you guys are helping me."  It was very sweet and a bit unexpected.  I told her that we take care of the people we love and that we love her a whole bunch. 

With the measurements in hand, I ordered Lyn a bracelet with the red emergency symbol.  It will have the safety clasp that I even have trouble with and is measured to not slip over her hand.  It is being engraved with her name, "Dementia PT" and "Intellectually Disabled" on the front.  On the back, it has "ICE: (Mom's Name)" and Mom's cell number.  I also ordered myself a new one.  Mine are scuffed enough to be a bit difficult to read and need to be replaced. 

Our bracelets will arrive in about 2 weeks.

Tuesday, March 13, 2012

A Different Perspective

This blog has allowed Mom and me to explore themes which are universal to dementia such as the confusion, frustration and grieving.  I hope that our experiences with my sister bring the story to a more human level.

We are, after all, telling the story of a person, her life's experiences and why her dementia diagnosis is important to us.  I just hope we're telling the story from a different perspective which is meaningful.

Monday, March 12, 2012

Strikes and Scores

On Thursday, Lyn had her regularly scheduled afternoon of bowling.  Her scores seem to be leveling off a bit for now.

However, Lyn is starting to struggle with maintaining her composure when scores are recorded.

One of the other girls got a strike in the first game.  Lyn didn't.  After the third frames was recorded, Lyn called out to one of the other caregivers.  The caregiver came over and Lyn stated "Something's wrong.  This is my strike but it's on another girl's side."  The caregiver explained to Lyn that the strike wasn't her's.  It really was bowled by the other bowler.  Lyn got mad.  She didn't act out, but you could tell from the expression and body language that her mood had greatly soured. 

I know that confusion, anger and delusions are common with individuals with dementia.  However, I hope that she's able to maintain appropriate behavior when she's bowling.  If her behavior becomes inappropriate, bowling would have to become an activity reserved for a day hab outing.  While stopping bowling would be very detrimental to her emotionally as well as physically, it would not be fair to her or the other bowlers to put her in a situation where she perceives creates conflict.  

Sunday, March 11, 2012

Hello Bright Eyes

I have always loved my sister's eyes.

Like her hair, they have changed over her life.  Early on, they were bright, electric blue.  Now, they're more of a dull gray.  Either way, they're large and expressive and lovely.

Saturday, March 10, 2012


Mom, Lyn and I lived in Montana for about 18 months.  Mom had remarried and we moved there to be with our step-father.

The town we lived in was small and remote.  It had a stop sign and a Frosty Freeze.  It was too small for a stop light or a Dairy Queen; much less a McDonalds.  The nearest one of those was 40 miles away.  The nearest mall was over an hour away in any direction.  The town had more bars than churches.  Folks who had moved there were called "The New Comers" even if they had been in town for 20 years or more.

Let me show you around town.

The block that ended after the drug store is where the stop sign was located.

Let's back up and get a broader view of Main Street.

There's my step-father wondering why I was photographing the main street of the small town in which we lived.  I did it because I wanted to remember the town when we left.  In this picture, I pretty much got the whole town.

Between Mom, Lyn and me, Lyn adjusted the best.  She didn't mind the snow and the cold.  She used to ski, after all.  That was a good thing because in our first 8 weeks of our life there, we experienced 6 massive snow storms.  Ok, they were massive to us.  We were shocked to learn that school was only closed due to weather when the governor declared a state of emergency.  So, despite all the snow, high winds and temps well below -50, we still had to go to school.

The town's folk were kind to her.  They didn't view her as a threat on the local job market.  The town was small enough that Lyn could walk up to the park anytime the weather allowed.  During that time, there was no Special Olympics available for Lyn.

She was not happy about that.

The good that came out of living in Montana was that Lyn and I graduated from high school together.  Had  we stayed in our original schools, Lyn would have graduated a year after me.  We also learned that Montana is not the best place for our family.

Friday, March 9, 2012

Phone Calls

After a week of heavy topics, let's ease into the weekend with a lighter topic.

I have no idea how many phones my sister has worn out.  Many, many phones have met their end due to the endless hours she spent chatting with a boyfriend.

Did I catch you off guard with that last statement?

Lyn has had more boyfriends than me.  She's had long, multi-year relationships with guys she's met through school, Special Olympics or one of her social groups.  Their relationships consisted mostly of chaperoned group social events, chaperoned occasional dates and nearly unlimited phone calls.

Imagine her delight when cordless phones came into the picture.  She could close herself into our room and  chat away in private, shooting me The Look if I dared to come into the room.

Thursday, March 8, 2012

My Brain is Frustrated

"My brain, it makes me frustrated.  My brain is frustrated.  I'm frustrated.  I'm tired of being frustrated!"

This was said after she sat at the dining table trying to put a puzzle together for nearly an hour.  Actually, she got about 12 pieces together in the first few minutes and then just sat there for the rest of the time.  After she stated this, she burst into tears.

Lyn knows her brain is changing.  She understands that she used to be able to complete a task, such as the puzzle, and that now she cannot.  This frustration and moments of sadness that can been seen in her expressions are painful to see.  We don't want her to suffer and this frustration is evidence of suffering.

Additional Information:
Emotional Problems - Depression, Frustration and Clinging
What to Look for: Irritability/Frustration

Wednesday, March 7, 2012

The Middle Part is the Hard Part

On Sunday, when we had our conversation via Skype, I noticed that Mom had to turn and help Lyn up from her chair.  It actually took more than a minute for her to stand from an armless chair.  When she sits on the couch or in the rocking chair, she has to use the arms to push up and even then struggles with it.  When she sits at a table, she relies on the table for balance and support as she works to stand.

I asked Mom how long had that been going on as a regular occurrence.  I had seen it once or twice when I was there in the summer and again in November.  Mom indicated that Lyn needs help getting up more and more now.  Once she's up, she can initiate walking forward independently still.

As I was reading through some articles in connection with this topic, I kept thinking back to my sister's walking.  I believe I have mentioned that she needs either a helping hand or a railing to take a step up or down even if it is only one step, such as onto or off of a sidewalk curb.  Lyn also now will frequently reach  out to hold onto the shoulder of the primary care giver with her at the moment.  Lyn's stride has dramatically shortened and she now must take a series of steps to turn around.

All of this puts her at a greater risk of a fall.   Unfortunately, this will only continue to get worse and will lead to immobility.  This is just another aspect of the deterioration of the brain.

In discussing this with Mom, she said "Maybe, I'm just in denial over where we are in this.  The start of this was over 10 years ago (when she was diagnosed with Sundowners).  The middle part is the hard part."

Additional Information:
Dementia Guide: What to Look For? Mobility
Social Care Institute for Excellence: Movement and Exercise

Tuesday, March 6, 2012

Sleep Changes

Lyn's pattern of sleep has changed.  She's now in bed around 7pm instead of the 9 or 10 pm that was her norm up until a month or two ago.  She's also sleeping later in the morning.  If Mom has to wake her, she's surly and acts as if she's not had enough sleep.

Sleep changes are common with dementia and scientists have not yet figured out why.  While she is sleeping more currently, this too will change.  Most likely, she will start having interrupted night-time sleeping and more daytime sleeping.

Additional Information:
For Sleep Changes - Alzheimer's Association
Sleep Problems in Dementia - Family Practice Notebook
Dementia - Behavior and Sleep Problems - Medline Plus

Monday, March 5, 2012

Getting Turned Around

Lyn and her respite provider went to the casino again on Saturday.  On a recent trip, she won $26!  This week's trip was very different.  Mom writes:

"Lyn said her respite provider had to come get her.  She always goes for fries while she's playing and has always been able to come right back.  Her respite provider keeps her in sight but doesn't go with her so Lyn feels independent.  Well, today she "got turned around" but didn't panic.  She stopped an employee to ask for help.  Her respite provider stepped in and called to her.  They laughed about it "because so many people were there" it was "easy to get confused."  Her respite provider said "it is really getting bad" the past couple of weeks.  She's not able to focus and seems more confused.  

She's getting ready for Church right now.  I could cry.  But, this is to be expected.  I doubt we'll go anywhere tomorrow."

Sunday, March 4, 2012

Dementia News

Just a quick rundown of this week's news articles dealing with dementia.

Memory, Other Cognitive Functions May be Restored by Reversing Alzheimer's Gene Blockade
Blockade of Learning and Memory Genes May Occur Early in Alzheimer's Disease: Treatable in Mice

Clearly the two articles above are related.  However, their headlines convey completely different messages.  The articles are worth a read.  We just have to remember that treatments that work in mice frequently do not convey to humans.  While we can genetically engineer the mice to display the symptoms associated with dementia, mice do not actually have Alzheimer's disease.  Dementia is a uniquely human condition so far as we can tell.

Promising Approach to Preventing Alzheimer's

Researchers Test Sugary Solution to Alzheimer's Disease 

Brain Imaging Technique Predicts Who Will Suffer Cognitive Decline Over Time

Slow Walking 'Predicts Dementia'

How Significant are Developments in Making Alzheimer's Brain Cells in the Lab?

Saturday, March 3, 2012

Why We Lie

Mom and I sometimes lie to my sister.  It is not something we're proud of, but it sometimes serves a purpose. 

I've already told you the tale of the Chocolate Police and about her relationship with Santa.  However, I now have two more examples to share with you.

Recently, Mom switched to using whole wheat pasta.  Lyn looked at dinner and noticed the darker color of the pasta.  She gave The Look and questioned what was wrong with it.  Mom, being the fast thinker that she is, explained that manufacturers now cook pasta longer.  My sister accepted this explanation and ate dinner. 

When a disaster strikes, Lyn will turn to Mom when she sees it on the news and ask "We don't know anyone there, do we?"  If you say "Yes", then she worries for days until she has some confirmation that the person is safe.  As a result, this week's tornadoes caused another lie to be told.  Lyn asked if we know anyone in Harrisburg, Illinois.  We do not.  When Lyn asked if we know anyone in Branson, Missouri, Mom lied when she said "No." 

Telling my sister we know someone in Branson would immediately cause anxiety to set in.  In this case, while we do know someone there, even speaking about that person causes Lyn to get upset.  You see, our father lives there.  However, he divested himself of responsibility for her or the rest of us over three decades ago.  We don't know how much about him she remembers but we do know that any mention of him makes her angry and anxious.  So, why bother? 

I have a hard time believing these lies are morally wrong.

Item to consider:
Markkula Center for Applied Ethics at Santa Clara University: Lying

Friday, March 2, 2012

Conversations with a Neighbor

There is a lady who lives just a couple of doors down from Mom and Lyn.  She's a lovely person who drops by to chat from time to time.  Thursday morning, as Mom and Lyn headed out to go to day hab, they encountered this neighbor and invited her along.  She took them up on the offer since Mom was going to come right back home after dropping Lyn off.

On the way home, the neighbor took the opportunity of unsupervised conversation to inquire about Lyn.  She said she has noticed over the last couple of months how Lyn struggles with her speech.  To her, Lyn seems slower to verbalize and frequently doesn't finish a sentence.  She's right.  I've noticed this as well.  I've also noticed that Lyn speaks at a higher volume and is emphatic in more of her statements.

The neighbor witnessed the drop off and saw Lyn's confusion.  She had brought her bowling bag.  When they arrived at the day hab facility, Mom asked if Lyn was going bowling.  Lyn didn't know.  Mom suggested Lyn go in and ask and "Take your bowling bag with you."  Lyn looked confused.  She got out of the car, went in and came running back out for her bag.  She did need it just as Mom suggested she might.  Seeing this exchange is what caused the neighbor to speak with Mom about it on the way home.

It is interesting to me how others are seeing the changes in Lyn, how they notice the differences from the patterns of behavior they are used to seeing from her.

Lyn did go bowling as her activity with day hab and scored a 120.  Later in the afternoon, she was scheduled for bowling with her respite provider.  They are seeing the respite provider much less than they used to because Lyn no longer wants to go to the Tuesday night social activity and is exhausted for her time at day hab.

After bowling for the second time of the day, Lyn was so tired that her respite provider brought her home an hour early.  In the hour and a half between bowling and the return home, they got a bite to eat and Lyn forgot her scores.  Good thing they bring them home on paper each week.

Despite the fatigue and the lapse of her short-term memory, it was still a good day for Lyn.

Thursday, March 1, 2012

And Action

To give you an idea of what may come out of Lyn's camera, let me tell you about a trip Lyn and Mom took to visit some relatives Kansas.  They drove out and stayed with the relatives for a couple of days before returning home.  The relatives live in a rural area where there was no much in the way of activities with which Lyn could be easily be amused.  Fortunately for all involved, Lyn was content to go any where than she had never been before.

So, one of the day trips involved driving up to the stockyards in Dodge City.  Mom reports that it was quite smelly there.  Lyn, however, was quite pleased, as you can see.  She asked our relative to take the picture with Lyn's camera.

During another day of their Kansas visit, as they were on the way back from another adventure, Lyn spotted a graveyard in Great Bend and asked for them to turn in.  Our relative kindly obliged.  Lyn was quite happy to tour the graveyard and has visited more than one around the country.

Lyn let me keep this graveyard picture.  She didn't want it anymore.  It is hard to know what other images she's tossed in the trash over the years.