Monday, February 29, 2016

The Visit

I came across an animated short which illustrates dementia.  What is reality and what is a dementia induced hallucination?  The short is in German but has English subtitles.



Thursday, February 25, 2016

Of Dogs and Dementia

My sister's dog Nikka makes frequent appearances on Dementia Be Damned.   She's a major part of Lyn's life.  Nikka loves Lyn deeply and is very excited to see Lyn return home each day.  Repeatedly, we've been able to watch the bond between Lyn and Nikka bring Lyn out of feeling down or confused.  Nikka asks for nothing from Lyn except for love and yet she gives Lyn so much more than that.  She watches over her and alerts us to periods of change in Lyn.  She entertains Lyn keeps her engaged.

Nikka joined the family shortly after Lyn's diagnosis.  She picked out Lyn and immediately fit into their home like she always belonged there.  Lyn wasn't open to a dog at the time but she couldn't resist Nikka's grin or gentle paws reaching up for attention.  It was love at first sight for the two of them.  

Nikka's not a trained service dog but she intuitively has figured out ways to help Lyn.  This sweet girl has made herself an integral part of Lyn's daily life.  I honestly believe that she's part of the reason why Lyn is still as engaged as she is.  

My family has long loved pits and pit mixes.  Nikka confirms all that we've loved about these dogs.  We could not have picked a better dog.  Fortunately, she picked Lyn.

That being said, I would be remiss if I didn't put a cautionary note out there.  Nikka works well in our family.  We've had a number of dogs over the years, many of them pits.  Mom and Lyn have a house with a fully fenced yard.  They knew what they were getting into when they decided to adopt Nikka.  Mom went into the arrangement knowing that she would bear the full weight of the care for Nikka.  She was mentally, emotionally and financially prepared to add a dog into the family for the full life of the dog while simultaneously caring fully for my sister.

I would not encourage a family to get a dog for a dementia patient unless the family were prepared to be the full care providers for the dog.  I would not encourage a dog for a dementia patient if the person was violent or aggressive in any way.  The reality with Nikka is that we got very lucky when she picked out Lyn.  She has settled in and bonded with my sister.  She has chosen a role in the family which suits her personality.  A different dog may not have been such a great match.  A different family may not have the same experience as we're having.

Dogs can undoubtedly provide enrichment and stimulation for a dementia patient.  They can ease the emotional swings.  However, the environment needs to be one where the dog feels safe as well as one where the patient is kept safe.  

Wednesday, February 24, 2016

At Least the Dog Helps

Mom writes:

Lyn's had a very difficult time finding words for the past 2 days.  This morning was the worst!!  She always likes to help me do the grocery list.  I ask what we need such as milk or bread.  I had already done it but wanted her to participate.

She stood by the fridge with a puzzled expression.  She opened the fridge & said "milk."  I got it.  She opened the pantry and just stood there very quiet.  When she turned around she asked "what about, you know, the green things you tear off?  I don't remember what they're called but I don't see them."  I had NO idea what she might have been thinking.  Is it something we eat?  Something we wear or bathe with?  "No! I don't remember the name."  Do we use them in the kitchen or bathroom or dining room?  She turned away and said she didn't know so I asked about toothpaste.  She again said she didn't know so I dropped it.

I asked her to get me the folder with coupons.  She wasn't sure where it was, even tho I've kept it by the phone for 3 years.  I pointed to it and she seemed surprised.

When I picked her up she was withdrawn.  Her lower back aches.  She couldn't wait to sit down with Nikka.  Nikka knew exactly what to do.  Look at how she's watching Lynn.



Now, things are lively.  What a great dog!!!  They are playing tug of war.

Tuesday, February 23, 2016

No Travel

In the early Spring, I have to travel for my company's annual conference.  It is several days filled with presentations, client interactions and lots of walking.  The conference is hosted in different cities each year and I've been fortunate to be able to stay for a few days to explore the host city.

This year's city is Denver.  I'm excited!  We have friends who live there and we're already planning to get together for dinner.  The day after the conference, I'll zip down to Colorado Springs to meet up with my Mother's third daughter, a very dear friend from high school.

We've known for a year that the conference will be in Colorado.  Colorado Springs is only about 5 hours north of Mom's place.  When I learned of the location last year, I let Mom know and we very tentatively planned for her and Lyn to drive up to meet us for an overnight visit.  We had thought that Nikka could come to help ease Lyn's anxieties.

The trip would have been possible a year ago.  It is not possible any longer.  Lyn has a couple of appointments the week of the conference but, more importantly, the distance of the travel and the overnight stay in a hotel will be too much for her.  We've been engaged with the Alzheimer's community long enough to realize that there comes a time when travel really and honestly becomes impossible.  Lyn 's comfort is more important than a brief visit.  The fallout on Mom would be significant.  Lyn would not do well for the 5 hour drive in either direction.  She wouldn't do well in the hotel overnight.

So, we'll forgo a visit in the spring and still plan for a visit in the Summer.  We'll also be prepared to stay in a hotel if that's easiest on Mom.

Monday, February 22, 2016

ID-10-T

We've been doing some work on our server at home.  As the settings have changed my laptop started having difficulty connecting to the net.  My husband worked on the connection last night and got it working.  When I sat down to Skype with Mom and Lyn, I was expecting to be able to connect without a problem.  I wasn't so lucky.  Fortunately, I was able to connect to Skype via my phone as my husband took another look at my laptop.

A minute or so later, he turned the laptop back to me.  It was up and connected.  To confirm, he had done a very helpful inquiry on Google for "someone who can't work computers."  He's subtle like that.  He declared the laptop had OE or pebcak issues.  Knowing exactly what he meant (the problem was me; not the computer), I leaned off camera and flipped him off.  He chuckled and left.

When Mom confirmed what he was saying and I admitted to flipping him off, Lyn immediately started to chastise me.  Somehow, the topic of sex got incorporated into the reprimand.  Lyn advised me that I should not have sex or flip people off in cars.  I should not do these things because she doesn't do these things.  I had to cover my mouth and stifle my laughter.  She was angry with me and was very serious in her reprimand.

I have agreed to not have sex in cars.  In the meantime, the laptop continues to have some connection issues and my husband admits it may not be the ID-10-T (idiot) error.

Friday, February 19, 2016

No Flying Plates

When Grandma was in her prime, she loved to eat with anyone and everyone.  When her dementia became more evident, she started withdrawing and taking her meals in her room.  Even if we were in another room or not going to be there during a meal, she still took her meals in her room.  When the time came that she needed to be in a nursing home, she flat out refused to dine with another resident.  Once, the staff tried to push the issue by wheeling her into the dining room when there was another resident in the room.  Grandma verbally objected before grabbing a plate and throwing it at the other resident.  The staff never tried to get Grandma to dine with anyone again.  Grandma's refusal made it clear she felt she was better than the others.  Dementia can be fun like that.

Lyn is starting to show similar behavior.  She will eat with Mom and if you go to a restaurant with her.  At day hab, she's now starting to object to eating with the other clients or eating what the other clients are eating.  If she knows they're ordering lunch as a group activity, she will try to convince Mom to let her take her own lunch or she will try to convince the staff that she needs a separate meal, even offering to pay with some of her dollars.  If the activity at day hab is to make a group meal, she will again try to take her own lunch and if that fails, she will go through the kitchen looking for leftovers from a previous day.  It isn't an issue of not liking the food that is being served.  The issue is that she doesn't want to eat what the other clients are eating.  She wants something she perceives to be better than what they're having.  This week, she decided that week-old, leftover spaghetti was better than fresh sandwiches made to order.

At least she didn't cause plates to fly.

Thursday, February 18, 2016

She Went

Yesterday, Lyn went to day hab.  She gave no indication of fear or hesitation before or during her arrival at the facility.  When I asked Mom if Lyn remembered what happened on Tuesday, Mom said I could flip a coin and that might give me as much insight as she had into the subject.

Overall, Lyn had a good day except when it came to lunch but that's a tale for a different day.

Wednesday, February 17, 2016

Is it Safe?

Lyn had a discombobulated day at day hab yesterday.  She was rather shaken up when Mom picked her up and, after finding out why, it is understandable.

One of the other clients had a violent outburst.  The client was hitting and trying to bite.  The client broke a number of mugs by throwing them to the floor.  When the outburst began, the staff responded immediately.  While some tried to call the client, the rest of the staff quickly gathered the rest of the clients into the movie room.  The staff stayed in the room with them and locked the door from the inside, keeping the volatile client out of the room and the rest safe from harm.  The staff did calm the client and then made arrangements for the client's day at the facility to come to a close.

Let me stress that the staff acted quickly to protect all of the clients, including the one who was having the outburst.  When the event was over, they made sure the upset client was with someone at all times and they went to each of the other clients to assure them that it was over.  They spoke to each one of how proud they were that they moved quickly into the movie room and remained calm.  They told them that their actions helped ease the situation.

Lyn was genuinely frightened as I'm sure some of the other clients were as well.  The 20 minute ride home showed how rattled she really was because she went through telling Mom of the events at least four times and they were identical conversations each time.  Between each, Lyn repeated her normal mantra of how Nikka was waiting for her.  When she would start the story again, she didn't remember having had the conversation before.

After they were home, she went through it several more times.  Finally, she was worn out enough to decide to take her bath.  When she came out, she asked "Is it safe?" She had transitioned from fear to worry.  Mom was able to assure her that the staff was highly trained and that they had protected Lyn and the other clients.  Lyn was calm enough to accept it.

She indicated she wants to return to day hab today.


Monday, February 15, 2016

Circus 2016

Yesterday was the annual trip to the Shriner's Circus.  Lyn was excited to go.  When asked if she wanted Mom to take her or for her respite provider to take her, Lyn was clear that she wanted Mom to take her.

Lyn loves going and her favorite event of the show is the motorcycle stunts.  She didn't talk much about it when we spoke after the show.  She wanted to let me know that there were two elephants and a camel.  She was delighted that she was able to purchase a program with lots of pictures and one of the clowns gave her two pins.

From the time they parked to the time they returned to the car, Lyn enjoyed herself.  Clowns greeted guests in the parking lot and helped bring a festive air from the moment they arrived.


They were also there to wish them well on their way after the show.


At one point, Mom commented that they never see anyone they know at the circus despite how well attended it is.  A few moments later, Mom spotted our Aunt and her grandson.  They were on the far side of the area and Mom was not able to greet them before they were lost in the crowd.  Not long after, Mom was startled to have another woman place her head on Mom's shoulder.  Fortunately, Mom quickly realized it was a dear friend of mine and her family.  Mom and Lyn run into her from time to time and Lyn has continued to remember who she is regardless of the context and unplanned nature of the encounters.  Personally, I love when they see each other.  I get comments from both parties about their encounters.  I also love that my friend still greets and is greeted by my family with love.

The circus day is always a very exciting day for Lyn even though it tends to be long and increasingly exhausting for her.  She intends to make a thank you card for the Shriners who send her tickets.  It is a kindness which is deeply appreciated.

Thursday, February 11, 2016

I Will Talk To Her

When I call and talk to Mom during the week, Lyn sits right near her to keep tabs on her and our conversation.  She will interject to correct Mom if she says something Lyn deems is inappropriate.  Otherwise, she listens.

About half the time, I will hear "I will talk to her."  It is not a request or a question.  It is a statement of fact.  Mom will hand the phone to Lyn and we'll chat for a minute.  Lyn will usually be the one to end the conversation by turning to Mom and announcing that "She has to go now."  It doesn't matter how many times I've heard this over the past 5 years, it amuses me.  I may not have to go and am usually available to carry on the conversation for some time after Lyn decides she's done with me.  It doesn't matter to her.  She decided she would speak with me and now she's decided she's done.

Last night, she decided she wanted to talk to me so she could tell me she had just tucked Nikka into bed.  She was very pleased with herself for deciding that Nikka needed to be tucked in.  Nikka didn't object.  She welcomed the warm blanket and quickly fell asleep.

It doesn't matter what is going on.  I will always speak with her when she declares that she will talk with me.

Wednesday, February 10, 2016

In Memoriam for a Friend's Mom

A year or so ago, I was fortunate to meet a lady who a mutual acquaintance was confident we would find something in common.  Oh was she right.  We went to lunch and bonded over a love of crochet and a shared sense of gallows humor.  We also found that we both had immediate relatives with Alzheimer's.  Her Mom had been diagnosed with dementia a relatively short time before we were introduced.

Since that delightful lunch, we've shared updates on her mother and my sister.  We've found we both had a pragmatic approach to their care, acknowledging the terminal nature of the disease and the care required.  Her mother's health was much more complicated than Lyn's and she's progressed very quickly.  

Her mother had been living with my friend's Aunt.  They had been planning to place her in a nursing home when they realized it wouldn't be long before she died.  Hospice was called in and my friend was able to attend directly to her Mom's final days.  She passed yesterday morning.

My friend indicates her death was peaceful.  She and her Aunt had been unified in the care approach for her Mom during her failing health.  They are also unified in their plans for her memorial.  They both agreed that the celebration of her mother's life would involve a bonfire on the beach with those who knew her.

As they gather to honor her, I hope they find happiness and comfort in each other and in their memories.  I hope my friend and her Aunt rest easily knowing they provided her mother with great care.  

It may seem odd to say, but when I received word of this lady's passing, I was happy for them all.  Her mother is no longer in pain or confused.  My friend and her aunt have closure and can move forward. They had long ago accepted the reality of the situation and, while they may grieve, they are not wracked with grief.  It was expected.  It was peaceful.  

Tuesday, February 9, 2016

Internet Safety

This weekend, Mom told me she took a couple of pictures of Lyn while they were out visiting the Bosque.  Lyn was immediately agitated.  She was not happy about Mom taking one picture, much less two.



She remembered when Mom asked to take a picture of her by their car but was not aware that Mom had taken one of her stomping away from the camera.



She started to lecture us on how to be safe on the internet and that posting pictures was a dangerous thing to do.  Lyn was ready to spin herself up and I decided to use some pretty strong tactics to redirect her.  First, I assured her that Mom approves every picture of Lyn that goes on the blog.  Second, I check them over and make sure that there is nothing inappropriate.  I assured her we don't want to make her feel uncomfortable or put her in any danger.  Finally, I pulled out the big guns.  I told her that sometimes, if I'm not sure about a post, I have my husband check it over.  Now, I didn't tell her that this final check is usually reserved for when I mention our children.  I felt that refining point would just muddy the waters for her.

Lyn listened and was clearly trying to think through what I was saying.  I had to repeat it a second time, particularly the bit about my husband, before she accepted it.  She did though and quickly calmed down.  She was pleased to know that he had a eye on things and was keeping Mom and me in check.  She has always deferred to him and Mom and I will unashamedly use him to help redirect her when needed.  He knows the score and goes along with it.

So, when the pictures were sent, there was included instructions that he was to check the pictures "so he can decide if they're ok."  He's checked them over and, with a chuckle, given his approval for us to post.

Monday, February 8, 2016

Share the Orange

Dementia is not a normal part of aging.

Alzheimers and other diseases which cause dementia symptoms are physical diseases.  The symptoms of the disease are the result of cell death in various parts of the brain.


Cross section of healthy and Azlheimer's brain
Brain comparison image from alz.org

Over the course of the disease, Alzheimer's can result in about 140 grams (4.9 oz) of matter being lost.  Given that the brain starts at about 1360 grams (48 oz), that means that about 10% of a person's brain is lost to the disease.



Additional information:
Alzheimer's changes the whole brain
Loss of Brain Volume Could Flag Alzheimer's

Thursday, February 4, 2016

Nikka Speaks

Mom writes:

The bath was taken @ 3pm.  Dinner at 4:30.  Sleep at 5:15pm.  Between bath & dinner she was sitting on the floor with Nikka on her lap.  She started laughing and when I asked what was funny she informed me that "Nikka is telling her to just stay home tomorrow."

I laughed and said we'll see what tomorrow brings.

Wednesday, February 3, 2016

Neuropsych Eval 2016 part 2

Day two of the evaluation went very well.  Mom learned that the first evaluation which was done on Lyn a few years ago was more focused on evaluating Lyn's IQ and was not focused or specific to dementia.  This one was focused on dementia and not IQ.

The doctor worked with Lyn for about an hour after they first arrived.  The second hour was spent with Ruby the dog and the doctor's assistant. (Ha!  I just realized I blithely named the dog while avoiding people names.  I'm not sure what that says but it amused me.)  Lyn was nice and cooperative when working with both.  The doctor did note how "highly distractible" Lyn is and how easily she "goes dow a rabbit hole" during a conversation.

While Lyn worked with the assistant, the doctor asked about Lyn's daily life, what she does and how she reacts.  She indicated it is a good thing that Lyn's never left unsupervised at this point.

The doctor indicated she had all the information she needed and Lyn's cooperation allowed them to complete the necessary evaluation in just two sessions.  The third session is not needed.  In a few weeks, Mom will visit with the doctor again to get the results of her evaluation.

As a treat for her cooperation, Mom took Lyn to lunch at our Aunt's sandwich shop.

While it took quite a bit of effort to line up this evaluation, we are feeling as though it was worth the effort.  When we get the results, I'll share them with you.

Tuesday, February 2, 2016

Neuropsych Eval 2016


Lyn is undergoing a new neuropsych evaluation this week.  The clinician who is performing it specializes in Alzheimer's patients and the intellectually disabled.  This is the evaluation Mom started trying to line up for Lyn months ago and that we had given up on due to lack of response.

Monday was the first day of the evaluation.  Today will be the second day.  If it is determined that a third session is needed, that will happen tomorrow.

Yesterday's session lasted for an hour and a half.  Mom describes it as an intense collection of background information, primarily focused on Lyn's health and biographic history.  The clinician asked about everything from where Lyn was born (Italy), where she graduated from high school (Montana) to what medication she currently takes for any condition (surprisingly little).  Lyn was able to recall where she was born with confidence.  She recalled one word of the name of the high school.  She couldn't tell the doctor where my family lives.  When the doctor commented that Lyn clearly had a sister, the statement was followed up with the question of "Do you have any other siblings?"  Lyn's prompt response was "No but I have a brother!"

The doctor asked about the previous evaluations, MRIs and other tests.  Mom is to bring in all of those reports with her today if she hadn't previously included them.  Mom had included some of the test results but the doctor is interested in more.  Mom also provided the write up of changes that have been noticed over the past year written by Lyn's speech therapist and me.

Today, Lyn will work with the doctor's assistant and the assistant's therapy dog named Ruby.  Mom's not sure what kind of dog Ruby is other than furry and highly trained.  Lyn was very happy to learn that Ruby would be involved.  They took a few minutes to introduce Ruby to Lyn yesterday which was very well received.

The topic of medication was addressed in depth.  The clinician acknowledged it would be years before a treatment for early on-set Alzheimer's or an effective Alzheimer's treatment is available at all.  Mom stated that knowing the currently available Alzheimer's medications neither slow nor stop the progression of the disease, Lyn would not be a guinea pig to see what side effects she would have with no hope for a beneficial result.

So, while the time yesterday was spent in a conversational tone, the questions were clearly calculated to help the doctor gauge Lyn's ability to respond as well as her ability to recall information from various points in her life.