Friday, January 30, 2015

Audiology Report

Yesterday, Lyn had her visit to the audiologist.  She was cooperative and pleasant.  The results of the exam are below:

The audiologist says that Lyn's hearing is normal.  There are differences between the left ear and the right ear but he feels it is normal and attributed the issue with the left ear to residuals from an ear infection.

In trying to understand the report, I looked up some resources and learned the following.

The audiogram tells us the tone of sounds and the volume at which she can hear them.  She can hear a 2kHz tone at about 15 decibels.  A 4kHz tone is audible to her starting at 40 decibels.  This means a high pitched sound is harder for her to hear with her left ear than with her right.  How quiet is 40 decibels?  It is somewhere between a whisper in a quiet room and a normal conversation.

The tympanogram tests how compliant the eardrum and middle ear are to sounds and air pressure.  Her right ear presents in a shallow Type A result which means the ear is compliant and she may have had ear infections as a child.  (She didn't.  I did.)  The left ear result seems to match most to a Type C result which indicates the ear is less compliant and that she's recovering from or about to get an infection.  It has been a couple of months since her last infection.  It will be interesting to see if she's got a new one quietly brewing.

Is her hearing normal in the left ear?  Perhaps.  The testing was done in a quiet booth with earphones on.  There were no competing sounds.  There was no other stimuli for her brain to process.  When she was seen by her physician, her physician noted diminished hearing in the left ear.  Additionally, the behavioral therapist who works with Lyn reported recently that Lyn has started leaning in and turning her head to the right when she's trying to hear you well.  So, perhaps her left ear is physically functioning in a normal or acceptable range and the issue is more with how her brain is or is not able to process what the ear is hearing.

Thursday, January 29, 2015

Let's Define Trash

Mom wrote me yesterday to share this little exchange:

This morning I asked her to get all the trash out, "including my bathroom, your bedroom and bathroom." She got mine then started to tie up the trash bag.  I said "don't forget your room" only to learn that this wouldn't be necessary "cuz there's just old paper in my trashcan."

"Go get it."

Sulk, pout and mumble as she goes down the hall. Yes, I'm unreasonable early in the day.

Tuesday, January 27, 2015

Continuing My Education

For the next month or two, my regular blogging may be a bit spotty.  Ok, that may is a bit of an understatement.  It will be spotty and we'll all get through it.

I'm working through a guided self-study course with the goal of a certification at the end for work.  I'll need to put in a couple of hours a couple of times each week to do the course justice.  As a result, my brain may just be too tired to blog at the end of the day.

Secretly, I've been considering taking courses towards a Masters degree for some time.  I've held off a number of times over the years due to concerns about parenting, finances or just the time commitment  while my husband was also dealing with classes for his own professional certifications.  I'm not getting younger and I think the time for delay is rapidly closing.  My kids are not toddlers who I have to chase after and the rest of my concerns have fallen into a state of resolution with the close of 2014.  Perhaps, with 2015, I should seriously move on this desire.  While I don't know that a Masters would do anything for me professionally, it wouldn't hurt and I'd be doing it for me.

Ultimately, I love learning.  I miss the days of college courses and the constant exploration into new concepts and thinking thinky thoughts.  Some of my professors changed how I view things and challenged my preconceived ideas.  While some of them have already passed, I can still remember how they'd push for me to make a connection between the theoretical and the practical.  I used to worry about the work for one in particular because he was such a tough and demanding instructor.  The semester I took two of his courses back to back and struggled to keep them apart was the best coursework I did.  The mixing up of the topics in my head is what led to greater learning for me that semester.  Those connections, when made, would make his eyes dance with delight.

So, for now, I'll start with this certification class before moving back into the bigger commitment of seeking another degree.  If you're really desperate for Alzheimer's news on any given day I don't post, there's plenty out there for your perusal.

Monday, January 26, 2015

Confusion Over A Cancelled Activity

On Thursday, Lyn was supposed to go to the Bio Park with a group from day hab.  However, it was bitterly cold and the staff wisely decided to postpone the trip until the temperatures rise again.  The staff explained to the Lyn and the others that they couldn't go because of the cold.

They then asked each person who signed up for the trip if he or she understood the reason why they would not be going.  The others expressed understanding and confirmed with comments like "I don't want to get that cold."  Lyn said she understood but was just mimicking what was being said.  When the conversation was over, she approached a different staff member and asked when they were going to the Bio Park, wanting to know if they would go before or after lunch.  The staff explained again and tried to redirect her with a run to a store to pick up snacks.

When Lyn returned with the staff from the store, she again was confused and asking about the trip to the Bio Park.  She was confused about why they went to the store instead of the park.  Once again, they explained it to her.  It wasn't making sense to her and she told the staff she had "things in my head but I don't know how to get it out."  Lyn decided to try a different tactic by asking when Mom would pick her up.

When Mom arrived, the director stepped out to speak with her, letting her know of the confusion.  The director also spoke about how they're seeing so much more confusion from Lyn on a daily basis.   Mom let them know about the hearing loss and stressed that the confusion is just going to increase as she transitions through the disease.  They had a couple of minutes before Lyn came out with her coat, ready to go.  She asked what Mom and the director were speaking about.  When they shared the topic, Lyn started talking about how she just didn't know why they didn't go to the Bio Park, confirming all that the director had just shared.

Thursday, January 22, 2015

Following Up on Auditory Issues

Lyn had her doctor's appointment to follow up on the hearing issues.  Just a reminder, she's been having auditory hallucinations and complains of hearing loss in the left ear.

The doctor said the left ear drum is not inflamed, blocked by wax or filled with fluid.  There was a small bit of wax which they removed.  Visually, everything looks fine but the hearing loss is cause for referral to an audiologist.  They were able to get Lyn scheduled for an exam with an audiologist next week.

The doctor confirmed that hearing loss, particularly on the left side is fairly common in Alzheimer's patients.  She also confirmed that Lyn's having hallucinations.  She praised Lyn for letting us all know when she hears something or someone and cannot identify the source.

The doctor asked if it was time to consider introducing medication to help ease Lyn's increasing agitation and disorientation.  She acknowledged that Mom and Lyn may not be really ready for daily medical interventions but felt it was time to start offering.  Mom has said "No for now."  They will revisit this topic with each subsequent visit.

So our concerns about Lyn's auditory issues have been confirmed and another appointment will be scheduled.

Wednesday, January 21, 2015

Thoughts from a Teen

I decided to ask my eldest a few questions about what thoughts Lyn and her Alzheimer's provokes.  My child was as blunt as ever and I've copied down the thoughts that were shared with me.   Here are the thoughts from the perspective of a young teen:

"I think Aunt Lyn's Alzheimer's is tough on her and everyone around her.  She doesn't always comprehend what is happening or why it is happening.  She also doesn't understand what people are saying.

It's an annoyance because we have to treat her like a child.  We have to use smaller words even in contexts that should be easy to understand.  We have to deal with her mood swings or the fall out from the mood swings.  Her moods and demands tear Grandma down.

I think of Aunt Lyn as another sibling who you have to be extremely understanding around.  I've always felt like she's been more of a cousin or sibling because she never could take a role of authority."

I've never asked before and I'm glad I finally did.  It helps me to understand another's perspective and to realize just how much patience this young person is trying to show when interacting with my sister.  It is not easy and our visits to Mom and Lyn's is very much centered around things we know Lyn can handle instead of traveling and seeing a new thing every day.

While my child understands the limits and tries to be patient, I appreciate that kiddo felt comfortable expressing annoyance.  In return, I thanked kiddo for the conversation and honest expression of thoughts and emotions.

Tuesday, January 20, 2015


Happy Tuesday!

Despite the winter, may a sunny smile brighten your day.

Monday, January 19, 2015

Over Stimulation

One day last week when Mom picked Lyn up from day hab, the receptionist said "she had a problem with her head today."  It took a series of careful question on the way home to determine what was going on.  Mom has to be careful to not plant suggestions in the conversation or Lyn will grab onto that as her answer.

Lyn was overwhelmed.  While day hab wasn't too noisy and there wasn't too much activity, she became overstimulated with what little was going on.  She can't describe what was happening in her brain or how it made her feel other than "weird things."

Day hab does have a quiet room that she can use when she's feeling her brain doing weird things.  Mom spoke with Lyn, encouraging her to tell the staff that she needs a little quiet time.  Knowing that Lyn won't remember this advice, Mom has spoken to the staff to let them know that if she gets like this again, she should be encouraged to take a break from the main room.  The staff at this day hab have been very responsive to Lyn and I'm sure they'll take this little change in stride.

As a side note, Lyn's reporting hearing voices in different rooms now and will go from room to room to see who's talking.  So far, she's not gotten upset about it but does keep looking for the speaker.  Tomorrow, Lyn sees her doctor about the reduced hearing in her left ear and the increase in auditory hallucinations.  I don't know if they'll perform a hearing test in the office or send her to an audiologist.

Correction:  Her appointment is Wednesday.

Friday, January 16, 2015

The Heart Has It

Winter has been bitter in New Mexico this year.  Mom's actually had to deal with more than one day of snow.  The roads have been slick and icy in spots.  On days like those, she really would prefer to stay at home.  To get Lyn to day hab, she has to drive half way across the city, over 15 miles and back.  A few hours later, she makes the same trip to pick Lyn up in the afternoon.

Earlier this week, there was a day of nasty weather and Mom tried to convince Lyn that it was OK to skip a day of day hab.  They could stay home, stay toasty warm and just relax.  Lyn refused.  She insisted she had to go to day hab.  She had to help out.  They were counting on her.  Mom decided the hassle of a drive on a wintery day was less than the hassle of a disgruntled Lyn cooped in the house for the day.

When Mom arrived back at day hab to pick Lyn up, Lyn handed her something and said "This is for you but you have to send a picture to (me)."

This was the reason why Lyn insisted she had to go to day hab.  She was making hearts for Valentines.  A staff member helped with the cutting and Lyn did all the gluing.

I smiled when I saw the picture for a couple of reasons.  First, her face looks so smooth in this picture and almost serene; not a scowl as there often is.  I can still see the downturn in the mouth, but it is a pretty good picture of her.  Second, I am glad that she made something for Mom.  Even if the delivery was brusque, she still put time and thought into it.  I love that she was insistent that this was important enough to drive across the city to accomplish or at least more important than staying home in her mind.  Finally, I love her fashion sense.

Wednesday, January 14, 2015

Happy 44

Today is Lyn's 44th birthday!

Happy Birthday, my dear!  Not to break with tradition, my gift to her will arrive soon.  (Lyn didn't get the procrastination gene from Grandma that I inherited.)

I hope she has a great day.

Here's a special birthday message from a certain bearded friend.

Tuesday, January 13, 2015

How Do You Choose?

Recently, I was asked "How do you choose to place your loved one in a Memory Unit?"  Let me be the first to say that I've not had to make that decision yet and so, I listened.

I listened as the person spoke of the love and commitment for the parent with Alzheimer's, the desire to keep the parent as independent for as long as possible and the fear that the Memory Unit would mean a loss of the parent's quality of life.  All of this factors into why familial care providers often struggle to made the decision to move the patient to a Memory Unit or even to a nursing home in the first place.

If we remove the emotions of the care provider, we can ask a couple of questions that may help the care provider to make a difficult decision.

  • Is the person aware of their surroundings?
  • Where is the person in their life's memory movie?
  • Is the person still functioning independently?
  • Is the person safe when unsupervised?
If we ask "Is the person aware of their surroundings?", we're asking if they can still get around without getting lost.  Are they wandering or looking to go home even when already home?  We are asking if they know not just the city or the country, we're asking if they know their neighborhood or even their block.  How small is the scale of their place?  If they step outside and get lost, if they don't know the difference between a hotel room and a hospital room, if they don't know their current room any longer, they may need more supervision than they are currently receiving.

Think of a person's life as a movie.  Alzheimer's puts that movie into rewind.  This is why it is reasonable to ask where the person is in their personal movie.  There are frequently clues that they will give you.  It may be a statement that seems odd or out of character.  If you were to consider that statement in the context of an earlier age, what age would that match up to?  If that person is in an earlier time, such as their 20's or teens or even earlier, their connection to the here and now is damaged and they may need more supervision than they are currently receiving.

It is important to be brutally honest in assessing if the person is still functioning independently.  Are they still able to pay their bills on time?  Can they tell the difference between scams and real requests?  Can they tell the difference between spam (e-)mail or legitimate business?  Can they still tend to their hygiene needs or cooking?  If they are not, they may need more assistance than they are currently receiving.

Most importantly, is the person still safe when unsupervised?  If the stove has been left unattended, if perishable food has been improperly stored, if household cleaners are getting misidentified, the person is not safe.  If you are considering baby-proofing an adult's home where no toddler resides, the person needs more assistance than they are currently receiving.  Safety trumps a person's desire to stay in their home until their death.

Neurological diseases cause the symptoms we collectively call dementia.  The most common cause is Alzheimer's.  Dementia is not some simple aging of the mind that leaves a person as a sweet but doddering elder.  It is a disease which is causing deterioration of the person's mind and a failing of the person's body.  It is a terminal disease.  Providing a person with a terminal disease with the resources and supports that are needed is showing love and commitment even if that means a move to a Memory Unit.

Monday, January 12, 2015

You Put What Where?

When you're engaged with someone who has an impaired memory, you may discover a new game we can call "You put what where?"  It is a fun and exciting game that is a little like Hide-and-Seek but with no All-In-Come-Free.

Ask any person who cares for an Alzheimer's patient and you'll probably hear a funny story about how they found an object in a place where it didn't belong.  For example:
  • the pepper shaker next to the bathroom sink
  • false teeth in a ziploc bag under a pillow
  • eye glasses in a boot or the mailbox
  • underwear in the freezer
  • the television remote in the fridge
This week, I found the box of dry cereal in the fridge next to the milk.  I cannot blame that on Lyn's Alzheimer's because she's not here at the moment.  We can chalk that one up to an absentminded teenager.  I was a bit startled and had to laugh.  It made me think of all the times caregivers play this game with the memory impaired patients.

Along these lines, Mom shared this story about my Grandmother with me.  She writes,

"This one morning after the nursing home staff bathed her, she was dressed in a nice new outfit.  The caregivers went to tend another client and the family priest happened to drop by.  He walked into her room and quickly exited, calling for the staff.  The two ladies ran in, thinking something terrible happened.  Father muttered "I will come another time." Mom had stripped everything off and tucked her clothes between the mattress and box springs.  She told them that someone had taken all her clothes and she had nothing.  They quickly covered her with the sheet and began looking for her blouse.  The question was 'How did she get everything off, get them pushed between the mattress and box springs in less than 5 minutes?'

Father didn't return for about a week and asked someone to check on her before he went in her room.  She was dressed but pulling at her blouse. She did that several times."

The poor priest must have been completely shocked and I regret not being there to witness the event. I probably would have been on the floor clutching my sides in laughter.  Grandma was so proper that I just find this story so funny.

Thursday, January 8, 2015

A Little Revenge is in Order

A package arrived at my home right around New Years.  It contained the paper chain that Lyn had decided to make.

When she had announced she was going to make one, I tried to convince her that Mom needed it hanging off her china hutch or her office book shelf.  My mistake was doing the encouraging where Mom could hear because Mom was able to intervene and redirect Lyn to making it with the intention of sending it to me.

Being the dutiful sister who can laugh at herself, I've hung it up.

It's not long enough to span the entire frame, but decorates enough for my purposes.  Lyn was able to see it hanging behind me when we Skyped this weekend.  She was very pleased and really that's what it is all about.

Now... I think I need to fuse some perler beads to send Grandma some designs from my youngest.  Two can play this game.

Wednesday, January 7, 2015

Blocking Receptors

I love when someone sends me an article or other tidbit of information that they believe may be of interest.  They are most often right.  

Thanks to a friend, I learned of an announcement coming out of Stanford last month.  In summary, using genetically engineered mice, researchers at Stanford have found that microglia can stop working properly and that work be reinitiated if a single molecule is blocked for them.  Microglia are a type of brain cell which serve as the primary active immune defense for the brain and spinal column.  If the microglia are working, they clean out plaques, damaged cells or other things causing inflammation.  Alzheimer's has a connection to a build up of plaques and inflammation and causes damaged neurons.

The implications of the Stanford announcement is that by getting the microglia working again Alzheimer's may be prevented by a daily pill much like a low-dose of aspirin helps prevent heart attacks.  That's pretty cool news!

Now for the obligatory note of caution.  This is an initial finding though an exciting one.  This also is found using a mouse model.  Unfortunately, potential preventatives or treatments which work in genetically engineered mice do not always show positive results in humans.  So, more work needs to be done down this path of research and tests need to be done on humans.  

Tuesday, January 6, 2015

Now What?

The death of Mom's cousin's cousin has gotten me thinking about what comes next.  What does a caregiver do once their charge has passed.

When a person is a caregiver, much of their time and personal identity may be consumed by caring for that person.  I don't think that the age or diagnosis of the person being cared for matters in this case.  The caregiver may be a parent caring for a cancer-striken child or a husband caring for his wife with Alzheimer's.  In each example that I can think of, I see common themes.  The caregiver is trying to provide for the physical and emotional well-being of the other person.  The list of tasks that the caregiver picks up to allow the other person to function at the level they are capable can be quite extensive.  The caregiver may have to take over everything from cooking to bathing to... well, you name it.  In the case of a person being cared for, their tasks may just be to eat, sleep and hopefully get better.  If the person is terminal, as in the case of the Alzheimer's patient, there is no getting better and  the caregiver's tasks increase to the point where the only things they may not be doing for the patient is eating and sleeping.

Before the person passes, they may end up living out their remaining days in a nursing home where several people can tend to their failing body's needs.  The familial caregiver, such as the person's spouse, may be alleviated from many of the daily tasks and have some time returned to them.  However, many often continue to spend time with their loved one in the nursing home on a daily or weekly basis, continuing their commitment as a caregiver.

To simplify this a bit and use the example of Mom and Lyn:  Mom takes care of all of Lyn's appointments.  Mom has an increasing amount of hygiene issues to oversee for Lyn.  While Lyn's awake, if she's not at day hab, Mom oversees activities to keep Lyn engaged and entertained.  When Lyn goes to sleep, she doesn't wander, thankfully.  This allows Mom to get a full night's sleep which many caregivers are not able to get.  However, Lyn sleeps for 14 to 16 hours a day.  During that time, Mom's not really free to run errands, go on a date or do anything that would take her from the house.  There will come a time when Lyn won't even be able to attend day hab.

This level of intervention and commitment often leaves caregivers feeling a bit lost after their  loved one dies.  Not only are they contending with the grief of loosing someone, they're also facing a huge life change equivalent to a divorce and being fired simultaneously.  The caregiver faces a very real question of "Now what?"  How shall they spend their time?  Should they go back to work if they're not currently working?  Should they take a trip like they always wanted?  What about a class at the local college?  For some, even those big questions pale in comparison to just trying to figure out how to structure a single day when they are no longer living each hour according to the dictates of another person's schedule.  If the person needed to have medicine every 2 hours, if feeding the person took an hour thee times a day, the caregiver may need time to remember how those minutes can be spent when those tasks are no longer needed.

For some, the death may not leave the caregiver bereft or unsure of how to continue.  The caregiver may be mentally ready to be free of those responsibilities.  This was the case when my Grandmother passed.  She had spent the last three years of her life in a nursing home.  During that time, Mom visited several times each week.  Her siblings also visited quite regularly, weekly if I remember correctly.  When Grandma passed, Mom already had a trip planned to help me through the first couple of weeks of my own motherhood.

Today, we talk about future plans for Mom.  In broad terms, I know she has a plan and that she's looking forward to the future.  If she finds herself wondering "Now what?", she knows that's a common and normal reaction to such a major life change.  If she feels that, we'll help her through it.

If you know of a caregiver who is now faced with the life change of no longer being a caregiver, go easy on them.  They may need a little time to get their footing and reclaim their own identity.

Monday, January 5, 2015

Perler Beads

Lyn decided she needed more forms for her perler bead projects.  She may have gotten the idea that she needed large square forms because she learned that my youngest now has perler beads and large square forms.  A quick run to the craft store satisfied Lyn and she spent hours Saturday night and Sunday morning working to fill one 6 inch square.

While she was working on this, she told Mom she wanted pictures taken and sent to me "so she can use them on what she does on the computer."
"You mean you want her to use them in the blog."
"Yeah, that."

When I spoke to Lyn yesterday, she told me that Mom had sent the pictures AND that the blog post was already written.  I told her I had received the pictures and that there would be a blog post.  She was pretty sure I didn't have to do anything because she had taken care of it by having Mom send the pictures.  She wasn't quite sure that Mom spoke truthfully when she assured Lyn that I have to write the post.

That's ok.  She made me giggle.

Friday, January 2, 2015

A Relative's Passing

Mom received word yesterday that the cousin of a cousin passed away in the small hours of New Year's Day after several years decline.  She had Alzheimer's.

We were so sorry to learn of her Alzheimer's.  Please forgive me if this sounds odd.  We are glad she has passed and is no longer trapped by the disease.  On one hand, it seems wrong to feel relief that someone has slipped this mortal coil.  On the other hand, we recognize that Alzheimer's is a terminal disease that as hard on those who love the patient as it is on the patient.

May she rest in peace and may her husband also find comfort and peace in her passing.

Thursday, January 1, 2015

2015 Already?

Is it really 2015?  

It amazes me how quickly 2014 passed.  When I think of the time that we've been writing Dementia Be Damned, it surprises me that we're now into our 4th year.  I remember standing in my living room pitching the idea of the blog to Mom and it definitely doesn't seem like that conversation was four years ago.

While we anticipate 2015 will be a year of change for Lyn, we hope to make it a good one for her.  She's firmly in the middle stages of the disease and we don't know how much longer she'll be an active participant in life.  So, each day we can keep her engaged and active is worth the effort.

We deeply appreciate the thoughtful messages you have shared with us privately as well as those shared here on DBD.  I'm always surprised when I learn of a new reader to the blog.  Most recently a note about it was included in a Christmas card I received.  (Thank you for that!)  

We deeply appreciate your continued reading.  We fully recognize that watching someones life end can be pretty grim.  We hope to celebrate the positive even as we document the challenges in providing care to Lyn.  After all, her challenges are not significantly different from any other Alzheimer's patient.  Yes, she's significantly younger and she is intellectually disabled.  However, I've learned over the past four years that my sister's progression through Alzheimer's is not unique.  Once you take away her two differentiating factors of age and initial mental capacity, Lyn's Alzheimer's experience is actually pretty run of the mill.  

So, as 2015 dawns and we wake up to face another day, we thank you and wish you much happiness in the year to come.