Thursday, December 29, 2016

Thinking of Holiday Dangers

The holidays can actually be dangerous time for those with Alzheimer's or another dementia causing disease.

If they live at home, the home may end up decorated for the holidays, introducing new objects such as a Christmas tree which may cause confusion.  Having many guests at once may also increase the person's anxiety and confusion.  The noise level goes up.  It is hard for them to follow one conversation much less multiple.  There is increased activity around them and they can become anxious.

If they live at a nursing home, they may be brought to a relative's home for a visit and not recognize the location.  When an individual with Alzheimer's doesn't recognize their environment, their anxiety can increase and, if the person is already starting to wander, they could feel an undeniable urge to "go home" but may be thinking of the home where they lived in their younger days.  The person doesn't have to be at the relative's home overnight to start wandering.  They could slip out quietly in the confusion of dinner preparations or when guests are arriving or when presents are being opened.

If they travel, traveling without a companion who will stay with them 100% of the time is outright dangerous.  I think of the elderly man I found wandering lost in the Los Angeles airport several years ago or the elderly woman who wandered away from the Reagan National Airport in Washington, DC and died walking distance from the airport.  I'm also thinking of the woman and her great granddaughter who got lost in VA as they drove from New Jersey to North Carolina.  They've been found and are safe.  While the various news stories indicate the lady had no known medical conditions, I'm wondering if dementia is a character in this story too.

Do these risks mean you shouldn't visit with an individual with dementia or have them visit in your home?  Not at all!  There are options available to help mitigate the risks associated with wandering and anxiety.

Some suggestions to consider:

  • Designate people to take shifts watching and serving as the primary care giver for the individual with dementia.  This will allow the effort to be spread across multiple individuals and alleviate the care load from any single individual.  This is, unfortunately, not always possible.  If it is, then consider it.  This may need to include overnight shifts, particularly if the person is prone to wandering.
  • Everyone needs sleep and dementia patients are not always tied into stable sleep cycles that correspond to the nighttime hours.  Technology can be a huge assist here.  Mattress alarms can alert if the person gets out of bed.  Door alarms can alert if they get a door open which should remain closed such as an exterior door.  If you use a door alarm, remember to also alarm the door to the garage.  The door may technically be internal but the person could open the garage door itself and get out that way as well.  Consider GPS trackers to help locate them if they get out and a medical ID to help identify them to anyone they may encounter.
  • Consider a smaller, more low-key visit in their nursing home.  This allows them to stay in their familiar environment and can satisfy your desire to include them in a holiday celebration.  Encourage others who would normally gather at your home to visit to swing by and pay a visit to the nursing home as well.  Spreading out the visit with all of the cousins can allow grandma to enjoy more focused time with each instead of feeling anxious over a busy visit with all at once.
  • Never let anyone who has been diagnosed with dementia or is starting to show the signs of dementia travel independently.  While they may find your insistence an intrusion, it really is about safety.
  • If you're looking at a visit over New Year's or the Fourth of July, consider the impact of the noise from fireworks.  Individuals with dementia often have auditory and visual hallucinations which can be quiet disorienting.  Taking them to see the fireworks may lead to an emergency if they try to escape the booming and flashing lights of the display.  Enjoying a televised viewing in a very well-lit room with the sound down low.  




Wednesday, December 28, 2016

Totally Unacceptable


You know I'm "unappropriated", right?  I've shared with you some of the many ways in which Lyn disapproves of her little sister: the drinking, the marital relations, the questionable life choice of having short hair and my choices in decorations.  What?  I haven't told you how she disapproves of how I decorate my house?  Yeah.  That was new to me too.

When we were Skyping this weekend, my dogs wanted out.  I took my laptop and carried the conversation with me.  When the dogs were ready to come in, I set the laptop on the counter so I could keep talking while helping the dogs dry off and wipe their feet due to the rain.  (Yes, you can teach dogs to wipe their feet.  It helps.)  

Lyn proceeded to tell me I was being unappropriated again and that I know better than that.  I needed to take it down and get rid of it.  It took me a minute to figure out what set her off but a glance over my shoulder revealed the crime against modesty which I was actively committing.  The laptop ended up positioned in such a way that Lyn could see a rather large magnet which sits right in the middle of the freezer door and she was scandalized.


I wasn't sure if Lyn could see that the young woman is clothed.  I picked the magnet off the fridge and brought it to the camera, pointing out that she was dressed.  Lyn countered that she needed to untie the bow to cover her stomach.  Mom suggested that if the bow was untied, her breasts might show.  That comment made Lyn more upset.  Even Mom pointing out that she was wearing a nice big hat didn't mollify her.  

She didn't want my husband or kids to see the magnet and I had to assure her that it was too late.  They've seen this magnet every day for at least 5 years.  Remembering that my husband is often my trump card, I pointed out that he likes the magnet.  He likes it because the model looks like Nigella Lawson.  

Lyn's not happy.  She still thinks I'm unappropriated but she'll accept that my husband likes this magnet.  I would be in SO much more trouble with my sister if it weren't for my husband.  

Tuesday, December 27, 2016

Finally Success

As a gift recipient, Lyn is next to impossible to please.  She may not like the color or texture of something.  She may not know why she doesn't like something which previous indications would lead you to believe she would love.  In previous years, a number of gifts I've given her have been rejected and some even returned to me.  It is frustrating but comes with much laughter.

This year was a successful year for giving gifts to Lyn.  She loved the thermal pajamas we sent her in two different colors.  She liked the print pattern and decided that the fabric was soft enough.

Mom gave her a Star Wars shirt as well as a wind-up Storm Trooper.  She was paling with the Storm Trooper when I spoke to them on the phone.

One of Lyn's team gave her a handmade winter beanie with a hole at the top so she can pull her pony tail through.  The giver let Lyn pick out the colors and Lyn loves the hat.  Hopefully, she'll wear it too.

She was also excited that Santa left her a pack of drawing paper which was something she had told him she wanted.

Despite coming down with a cold and generally feeling quite poorly, Lyn had a good Christmas.

Wednesday, December 21, 2016

Memoriam: Shirley

Today, the Killen family will lay to rest Shirley, wife, mother and grandmother.  Shirley died of Alzheimer's after many years of declining health in which her husband of 60 years cared for her.

Shirley's daughter is my friend and I have been honored to listen and learn about Shirley over the past few years.  Shirley's stage in the disease was more advanced than Lyn's and I've been able to learn from those who go before me.

The path has been long and, at times, very hard.  Shirley was well cared for and deeply loved along the way.  She can rest now.  May her family find comfort in the care they gave her and may her memories bring them smiles in the days to come.

Tuesday, December 20, 2016

Of Proteins and Methylation

It has been a while since I have taken the time to really dive into the current Alzheimer's research.  Let's just say that my non-blog life takes a lot of time.  So, let's try to get caught up a little.  Here are two for today.

DNA methylation is involved with memories going from short-term to long-term storage and may impact relearning.  This experiment was interesting because it involved honeybees and how they learn.  The honeybees have a more simple brain than humans and have a visible response of sticking out their tongues when they remember where a source of food is located.  If you block DNA methylation, you directly impact the bees ability to learn.  DNA methylation also happens in human brains and this study indicates that what happens in our epi-genome may play a role in our development of Alzheimer's.  In other words, we may have a genetic predisposition for developing Alzheimer's but it may take certain environmental triggers to cause it to develop in any one person.

Aquaporin-4 may be another protein for scientists to look at in the quest to find a treatment or cure of Alzheimer's.  Its job is to conduct water through cell membranes and helps the brain flush out proteins such as amyloid and tau from building up in the brain.  If there's too little Aquaporin-4, the brain may not be able to clean itself well.


Monday, December 19, 2016

The Highs and the Lows

Conversations with Lyn are full of highs and lows.

On Sunday for example, she was happy that she got to see Santa again on Saturday.  She had attended the holiday party hosted by one of the support agencies and he "snuck in and snuck back out."  However, she started to get very agitated about one person requiring Mom and I to distract her.

She's as persistent as my eldest child which is to say that she can bulldog a subject when it raises her ire.  She was deliberately tuning Mom out.  I had to pull out the big guns and tell her about how I gave some of the coasters she made for me to a colleague at work.  Her coasters made him happy.  I knew what I was doing and what the consequences would be.  Sometime after Christmas, I anticipate receiving a box with more coasters that I can "give away."  I didn't tell her that I demonstrated the great flying ability her coasters have.


Tuesday, December 13, 2016

Our Helpers

Mom does a lot of baking through the year.  She bakes assorted breads and cookies.

I used to bake until my husband had some significant dietary changes as we tried to sort through some health issues.  Going gluten-free broke me of my baking skills and reintroducing gluten didn't make them reappear.  I cook more than I bake.

Both Mom and I are in the kitchen daily doing something to prepare edibles.  Often, we get offers of help from younger members of our households.

My youngest has started offering to help.  Kiddo waits until I'm wrapping up and about to plate before offering assistance.  The few things that can be passed off, such as setting the table, will be.  My kitchen is small, my assistant is strategic in the offer and so, not much assistance occurs.

Lyn will offer to help mom bake.  She used to help transfer cookies to the cooling rack.  If Mom needed dough formed into balls or balled peanut butter cookie dough mashed with a fork, Lyn could help.  Lyn used to be able to help her retrieve ingredients from around the kitchen.  Now, when Lyn offers to help, she will come and stand at Mom's shoulder or on the other side of the kitchen island from her.  Once there, she indicates she doesn't want to help.  She just watches and critiques instead.  Mom's kitchen is larger and better laid out than mine.  However, her assistant really isn't interested in helping and not much assistance occurs anymore.

We come at it from different angles, but our assistants leave us shaking our heads, often with a smile.


Monday, December 12, 2016

Nutcracker 2016

Mom and Lyn attended the matinee performance of The Nutcracker at the Kimo yesterday for the fifth straight year.  Lyn enjoyed the performance to some degree but her assessment of it was not as enthusiastic as it has been in years past.  She was more interested in the very sparkly ballerina Christmas ornament she purchased at the show.

Lyn indicated she thinks this is the last time she wants to go.  She wasn't happy about going before they left and was generally in a bit of a sour mood.  She hadn't been as excited about the pending show beforehand, even when Mom purchased tickets weeks ago.  Lyn was happy to be out and about but has suggested they find something else to do in the future.

Tuesday, December 6, 2016

Of Trees and Elves

Mom and Lyn are attending Mass early on Sundays instead of on Saturday evenings because Lyn was starting to panic with how dark it was after the late afternoon Mass.  By going so early, they have plenty of time to run errands, do an activity and stop for lunch before coming home for our Skype conversation.  On Sunday, they filled their morning with a visit to the convention center to view the Festival of Trees.

The trees are an annual event and one which Lyn enjoys attending.  It is low key but filled with plenty of pretty sparkle to entertain her.  This year, she was excited about the tree inspired by the Minions from the Despicable Me movies.  It was simple, bright and cheery.



She was confused by the tree inspired by a wedding cake.


I suspect the tulle and the monochromatic approach doesn't give her enough contrast to appreciate it.  Remember, vision fails with Alzheimer's.

One of the other reasons she likes going, possibly the main reason really, is that Santa will be there in person.  The advertisements for the event announce he will be in attendance and she knows she'll be able to get a hug in.


She was nearly bouncing with her excitement in telling me about seeing Santa.  She told him about the blog and he promised to read it.  He told her to put her arm around him and, of course, she did!

Honestly, I wonder sometimes what the actors are able to piece together when they encounter someone like Lyn.  Like Cinderella in Disney, his job is to make someone happy and he never knows just what will happen.

To all the Santas who have made her and countless others smile over the years, thank you.  Your rosy cheeks, snowy beards, and patient, cheerful disposition have kept the very large Elf alive for her.  You're a crucial part of her Christmas and have never failed to bring the magic.

Monday, December 5, 2016

Processing Santa

Lyn viewed her video message from Santa several times over the past few days and loves it.  Upon watching it the first time, she immediately wanted to call our Uncle in Tennessee to tell him about it.  He lives just about 10 miles from Gatlinburg and has been dealing with the impact of the wild fires there.  He was happy to have a call which was so upbeat and excited.

Lyn no longer realizes that I am behind the videos.  To her, they really are pure magic now.  Last year, she was still in on the game, even saying "...you KNOW!  You sent it!"  This year, there was no connection between her receipt of the video any anything I may have done.  In Lyn's reality, Santa really did send her the message.  He really looked for her file and his team made the decision that she was on the Nice list.



She wondered how he got the picture of her and the picture with me.  Mom assured Lyn it was "Christmas magic" and she agreed with "Must be!"  She also has no firm grasp on time or how quickly things can be shared electronically.

I have the option of the outcome being Naughty or Nice.  I cannot imagine how much it would hurt her to have Santa declare that she was on the Naughty list.  If she was able to process a joke and really understand that I was just playing, then maybe.  A Naughty list video could be done for Mom and she would get it.  Lyn would just be crushed.  There's no fun to be had in that which is why last week's post indicated that Santa had made a wise decision.


Thursday, December 1, 2016

Santa's Wise Choice

The Portable North Pole has come through again.  Lyn's annual message is ready for her to view.


This is part of the reason for the photo with Santa that I had done.

Mom showed Lyn yesterday's blog.  Her only reaction was to comment that it was a nice picture before wandering off.  Ah well... maybe she'll like it more when she gets the print out.  At least I'm pretty sure she's going to be excited about the video.

Wednesday, November 30, 2016

My First Santa

For many years now, Lyn has gotten at least one annual picture with Santa.  Sometimes, she gets multiple pictures.  Santa remains a beloved person in Lyn's life.  She gets excited when she sees him. She wants to hug him and talk to him.  All of this was playing through my head when I saw the Santa display at my local mall earlier this week. 

It was early morning, the shops had just opened.  I was in line to get at hot tea after making some quick purchases.  Santa was just getting settled and, as I watched, it hit me that I could not recall ever having a picture taken with Santa.  I jumped out of line and marched over to him before I could think twice.  There was no line.  Had there been, I probably would not have done it.

Santa was surprised as I came around to his seat and asked if I could take a picture with him, explaining that I wanted to send it to my sister.  He thought it was a bit of a prank for her until I explained that she has Early On-set Alzheimer's and Santa is one of the few people she gets excited over still.  "This is a special picture then!" he said and quickly got positioned.  

The photographer took several shots and we quickly decided on the one below.


I made my selection of the image and the prints, hurriedly thanked Santa and the photographer and went to pay.  I tried to be discreet as I wiped a tear away.  (Don't ask.  Sometimes those onion chopping ninjas strike even in public.)  The young woman manning the register saw the movement and asked if I was OK.  (GAH!  The dust...)  I wasn't sad; just emotional.  I explained that my sister with Alzheimer's loves Santa and the picture is for her.  She was hit by the onions and dust too.  

The picture is being sent to Lyn and has been incorporated into her video message from the Portable North Pole.  

Tuesday, November 29, 2016

She Defines Giving

Mom always wanted to be a mother.  She wanted a big family and pictured herself raising six kids.  She has long been the type of person who could give and love, knowing it is often a job which goes unrecognized or unappreciated.  At an early age, she helped her parents care for her four siblings, often doing the cooking and cleaning.  When she married, she had hoped for the happily ever after but found that three children and having to become a single parent was the reality.  She raised us without support or involvement from our father.  When Lyn and I graduated from high school, Mom and Lyn returned to Mom's childhood home to care for my Grandmother after my Grandfather passed.

Today, Mom is "retired" but still caring for Lyn.  This is a common situation for parents of the intellectually disabled.  Mom is still building her daily schedule around Lyn's needs; even today which is Mom's birthday.


Mom will spend today making sure that Lyn's needs are met, errands are run, and chores completed.  My hope for her is that one day, she won't have to take care of another person or worry about another's schedule before doing what she wants.  I hope that she'll be able to enjoy a glass of wine without a glare or to do the things in her bucket list which she's not supposed to have according to Lyn.

Today, I hope Mom knows how much I love her and appreciate her.  I had no clue what efforts she extended for each of us until I had my own children and I had no idea how much more she was willing to give until then.

Happy Birthday, Mom.

Monday, November 28, 2016

A Budding Artist

On Sunday, Lyn asked if she could make me a painting of a cross.  I wasn't sure I heard the question correctly and asked for clarification.  She repeated that she wants to paint a cross for me.  It would be nothing fancy.  She thought it would be nice and wasn't sure why I won't like it.  I'm used to not always knowing what's going on in her mind (or the minds of my kids for that matter) and can usually fill in enough to successfully see what happens.  So, I assured her that I appreciated her desire to make me something and that I will like it no matter what she paints for me.

The "no matter what" portion is pretty key here.  She apparently feels the need to paint a religious symbol for me.  I am not religious, having stepped away from it long ago.  She knows I am not a regular church goer but doesn't understand why.  With a bit of an increasing frequency, she has felt the urge to remind me that God loves me and she thinks I need to go back to church.  I appreciate her thinking of and being concerned about me.  Honestly.

When the conversation started, I didn't know what she meant by "paint a cross."  She has gone to pottery studios many times over the years and painted items which have then been glazed.  I currently store my earrings in one of her pottery creations.  As a result, I thought she meant she was going to paint a ceramic cross for me.  I was wrong.

Lyn's Community Access provider has been introducing Lyn to painting on canvas.  Lyn loves it and has done four paintings to date.  She's very happy with the results of her painting and is wanting to share.


I have no idea if Lyn will actually paint a cross for me or not.  I am just happy that the person who works with her for Community Access support is so good to and with her.  I am happy she is enjoying their activities and time together.  Lyn loves creating things and her provider is letter her explore crafting with things she has not done before.

Monday, November 21, 2016

Drive Thru

On Sunday, Mom and Lyn went out to run some errands.

They went to a shopping center they have visited for years.  Several times, Lyn asked if they were going a new way.  They were not.  She just no longer recognizes her way around town with increasing frequency.  Once at the shopping center, Lyn asked if they were in a new store.  They were not.

On the way home, Lyn pulled out one of her subtle tactics.  She doesn't ask for things much.  She makes comments.  The comments are designed to sound informative but are actually a request in disguise.  She used the same tactic when we were kids.  Back then, she would say something like "Grandma, those oatmeal cookies are my favorite."  In Lyn speak, that was often how she would say "Grandma, may I please have an oatmeal cookie."  Yesterday, her comment was "I have never gone to McDonalds drive thru."  She has.  Mom doesn't bother to remind her.  Mom was kind enough to play along and take her to McDonalds.  Lyn was very confused as Mom pulled into the drive thru.  Mom ordered, pulled forward, paid and collected their food.  Lyn was genuinely astounded that you didn't have to go inside to handle the order.

I don't know how long it has been since Lyn actually did go through a drive thru.  I know she was with me in the spring when we swung by a Golden Pride to order 2 dozen tortillas for me to add to my suitcase for my husband before flying home.  (Yes, you can buy tortillas by the dozen at a fast food restaurant in New Mexico.  They're fresh and better than the ones in available in the grocery stores in VA.)  Anyway, my point is that her memories and cognitive abilities seem to be slipping quite a bit lately.  I don't know where she is in the rewind of her life's movie.  I do know that she looks visibly lost most days when I see her or see pictures of her.

On the positive side, Mom and I worked together and resolved her camera problem without the help of IT support (my husband) allowing us to see each other when we Skype.  We were both delighted.

Thursday, November 17, 2016

Like Kenneth

My family and I have been enjoying the new tv sitcom "Speechless."  It's about a family with with a special needs child, JJ, who works with a care provider, Kenneth, through out the day.  In the Halloween episode, there is a bit where the kid wants to go to a party with his high school friends and the care provider tries to reject the idea in favor of going to sing Monster Mash at karaoke.  The tension of the care provider having to navigate between what he wants and what his client wants is a repeating motif in the show.

While the show's care situation is very different, I feel like the care provider character is a good character.  They have made an effort to show that the family often has one expectation of the care giver and the care giver is just another person with their own expectations.  They also show the growing relationship between the care provider and the client.

What care providers do is an essential part of how an individual like Lyn or their family members get through the challenge of just living with the health or disability issues at hand.  They may help with feeding and hygiene issues.  They provide structured supervision and activities to the client so the client's normal care giver such as a family member may have a break.  They work to keep the client safe and may intervene if a decision the client makes is a risky one.

In the case of the show, JJ wants to go to a party.  Kenneth takes him even though he would prefer to do a different activity.  When the JJ wants a beer and is under aged, Kenneth does try to intervene.  Both of these are appropriate actions on part of the Kenneth.  If the provider had wanted to take care of his own chores or personal needs while being paid to provide services, that would not be appropriate.  With Lyn, this can get tricky.  Lyn will ask to walk around Sam's Club.  She doesn't want to buy anything but enjoys walking through the store.  If I was her care provider, I would be very tempted to pick up an item or two if I needed it while there with her because it would be efficient.  Lyn doesn't mind if her care provider does purchase something and has even asked her care provider if they can go do the provider's weekly grocery shopping as the activity for the day.  If Lyn asks, it is ok.  It would be a problem if the care provider decided to tend to their needs instead of the client's desires and took advantage of their time with a client who doesn't have the ability to object.

Tuesday, November 15, 2016

A Balanced Load

Lyn has lost more of her ability to help with the laundry recently.

When Mom asks if she needs laundry, Lyn is still able to put her pants into one pile before grabbing the rest of what needs to be washed.  When she gets to the washing machine, if it is closed, she now needs help figuring out how to open it.  She's genuinely confused and is not able to identify the lid's handle.  Conversations at this point begin with some version of "I don't understand something.  What am I supposed to do now?"

Once the lid is opened, Lyn now just drops the clothes in one pile.  They have a top loading washer.  Until recently, Lyn knew to spread the clothes around so that the load would be balanced.  She no longer understands what Mom is asking of her.

Mom's redirection tactic is to ask Lyn to check her room for any other clothes.  While she's checking, Mom redistributes the load and gets it started.

Laundry is one of the life skills that Lyn worked on in high school.  This is a skill set she's been using on a weekly basis for nearly 30 years.  At this point, she can sort her clothes and take her clothes out of the dryer.

Monday, November 14, 2016

Making Progress

Well, last week disappeared on me.  Between the 2016 Presidential election and the lingering effects of the pneumonia, I was not up for blogging and found myself in bed by 8 pm on more than one evening.

So, what did you miss with Lyn?  Not much.  Tomorrow we'll talk about the laundry and maybe later in the week I'll talk about the responsibilities of a paid care provider.  Otherwise, it has been a week of Lyn going to day hab, spending time with her community access and respite providers.

She continues to remain worried about me but our Skype conversation allows her to see that I am slowly improving.  Unfortunately, I have not been able to see them.  It appears that the camera on Mom's laptop has died and it may be the signal that we finally need to replace it.  It was a couple of years old when we refurbished it and gave it to her.  I am pretty sure she's had it for more than 5 years now.  I did suggest that if she would upgrade from a flip phone to a smart phone we could continue Skype conversations with full video from a phone.  Despite not having visuals on her, I could tell her response and we both ended up laughing which for me is still a risky proposition.


Thursday, November 3, 2016

Baking Season

For many, the transition to the Fall and Winter holidays means it is the time of year for baking.  I'm definitely in that category myself.  Mom bakes through out the year and Lyn will often help her, especially if they're making cookies.  I can't remember a time when Mom didn't have cookies, muffins or some sort of bread in the freezer, ready to pull out at a moment's notice.

As Lyn was heading for bed on Tuesday, she made a baking request.  "The next time you make banana bread, can you use pumpkin?  There's still one bag of pumpkin in the freezer."

Mom promised they will bake pumpkin bread and use the frozen pumpkin.  That reminds me that I've got frozen pumpkin in the freezer and a 40lb pumpkin on my step to cook down.  Perhaps a custard needs to be made in my house too.

Wednesday, November 2, 2016

Happy Wednesday

It is a beautiful, Fall Wednesday.  The leaves are a riot of colors.  The birds are singing.  My laryngitis continues but Lyn's cards arrived in the mail Monday afternoon.  They make me smile and I appreciate the effort, time and love she put into them.


Her card making skills are not what they used to be.  That's OK.  I love them nonetheless.

Tuesday, November 1, 2016

ISP Set

The Individual Service Plan for the next year has been set.  There's not a substantial change to the services she will receive.

Lyn will continue with day hab 3 days a week.  She will have community access 2 days a week.  We had hoped to flip those two resources, but paperwork wasn't properly filled out and, unless it becomes a major issue, we will leave it for now.  I believe that behavioral therapy has been discontinued.  Speech therapy continues outside of the ISP.

The state of NM has apparently decided to step away from the SIS assessments.  They are asking for the staff to provide adequate clinical justification for the resources needed instead of doing the assessments.  The state has struggled with the assessments from the time they implemented them and has modified them multiple times over the 5 years that they have been in use.

We will move forward for the next year with the resources currently in place.  If there is a substantial change over the year, Lyn's team can request modifications to her ISP.

Monday, October 31, 2016

Recuperating


Lyn's been very worried about me this past week.  I was sick over the weekend when I wrote the posts which went up on Monday and Tuesday.  I was pretty sure it was bronchitis (it was) and committed to seeing my doctor on Monday.  By Monday night I was substantially worse and ended up being diagnosed with pneumonia as well.  By then end of the week, I had also developed laryngitis.

I am recuperating and each day brings some improvement.  I've done daily "I'm not dead yet" check ins so that Lyn would know I was ok.  She's sent me a mug and has told me to check the mail because she's sent another package as well.  I anticipate a handmade get well card.

Lyn and I were able to keep our weekly Skype conversation this week.  I can't really talk because of the lack of voice and the attempt brings on the coughing but my talking isn't the point of Skyping with her even on a good day.  She could see me and that's what was important to her.  

She gave me lots of instructions I'm to follow.  If I ever doubt my doctors, I should just ask my sister what I should do.  According to her, I'm to take lots of hot showers, sleep, drink lots of water but not alcohol and take many different medicines.  I think she's leaving that last point for my doctors to decide what I have to take.  I can't argue with the advice given and tried to assure her that I was, indeed, following orders.  

I don't like to cause her worry but she always worries when I'm sick, even if it is a small illness.  This time wasn't a small illness and I understand and appreciate her concern.  It is driven by love.  

Tuesday, October 25, 2016

Not About You

When I was a foster parent, one of the concepts which was repeatedly stressed was that we needed to consider all of our decisions and actions with regards to our foster children in the light of "What is best for the child?"  This sometimes led to us having to do things we didn't want to do.  We didn't want to take any of the children to visit the people who abused them.  We took them for visits because even abused children love their parents and the state was trying to see if reunion was possible.   

When I think about the care that needs to be given to someone at the end of their life, I see the need for a similar approach.  If you make decisions from a position of "what I want," you're likely to make decisions or take actions which are not what the individual would decide for themselves.  

Consider for a moment, a person in the final stages of Alzheimers.  He may not be able to speak or make much eye contact.  She may be struggling with additional diseases such as cancer, diabetes or osteoporosis.  Do you know what the individual would want done in different scenarios?  Do you have a car understanding of what level of intervention the individual would find too much?

The only way to know is to have the discussion early and often.  The conversations don't have to be highly emotional nor do you have to wait until someone has a significant or life changing diagnosis.  I have conversations with Mom and my husband on a pretty frequent basis and I know, for example, that Mom wants no life support or resuscitation measures.  When the time comes that there is an emotionally challenging health situation, I feel I have the knowledge at hand to make decisions for them if they are unable to make the decisions themselves.

When a person is diagnosed with Alzheimer's or other disease which will impact their cognitive abilities, I firmly believe we should write out a plan based upon common stages in the disease's progression.  For example, if the person is still driving, consider an action point that defines when or why the person's car keys and ability to drive should be removed.  Consider at what point you may need to move the person to a nursing home or, as they approach the end of life, what palliative care they would want.  You may find that the person wants less intervention than you personally would want them to receive.

While the person can still give voice to their care preferences, document it and implement it as much as is humanely possible.  Even if it is difficult for you, you're showing them a tremendous amount of love and respect by following their care wishes instead of imposing yours.

Monday, October 24, 2016

That Hair

Lyn has had long hair most of her life.

There was a period of time when we were little that Mom had it cut into a pixie but Lyn prefers her hair long.  At its longest, it was long enough for her to sit on it.  Her hair is thick, straight and heavy.

I prefer my hair short, nearly shaved.  My hair is thin, curly and fine.  Long hair just does not work for me.  I got my hair cut this week to a super short level that I've not had in a long time.  Lyn lectured me about growing it out.  She showed me her pony tail and told me I should just be like her.  She rejected my explanation that I prefer my hair short.  It was not an acceptable response but she really couldn't argue the point too much so she scowled at me.

When I saw a picture Mom posted earlier this week of Lyn's hair, I had to laugh at the mane that erupted from her hair scrunchy when she took it off and ran her fingers through her hair.  Lyn thought the picture was funny too.


I'm glad she likes her hair.  She told me yesterday that she doesn't want to cut it.

Thursday, October 20, 2016

Fidgeting

Lyn can still be occupied by sorting her perler beads.  She rarely does her stitching and hasn't done a puzzle in months.  She still occasionally attempts to play solitaire on a computer.  However, there may come a time when even those few activities.  So, what do you do when you have a person with dementia who needs to be entertained?

You can provide them with a fidget mat or quilt or apron.  A fidget mat or quilt is a small cloth with a number of activities sewn on to it.  It is small enough to cover the lap or the table area in front of the individual.  If you use an apron, you have the advantage of ties which allow you to keep it from falling to the floor and out of reach of the individual.

To the base, you attach items such as zippers, buckles, buttons, laminated photos, pockets, beads or other objects which a person may enjoy manipulating.  A marble in a sleeve could be easily added as a fidget device.

The goal is to provide activities which are repetitive such as sliding a zipper up and down or buttons from one end of a string to the other.  The activity should be something that doesn't need to be reset by the care giver.

Here are some examples you can look at for ideas.
Sew Many Ways Kimi
Susan's Quilt Creations
Nancy Zieman
Sewing Wilde
Sharky Knows

Wednesday, October 19, 2016

Back at the Keyboard

Well, the best intentions...

I returned to VA on Monday and was exhausted.  Thus, there was no blog post yesterday.  Heck, if it wasn't for take out, my family would have had cold cereal for dinner.  That being said, I'm so very glad I went.

Now, back to the blog.

Lyn's in a difficult state.  Sleep patterns are changing again. She's making it so Mom gets little sleep unless Mom goes to bed when the sun sets.

On Sunday, Lyn was out of sorts.  Mom had told her that they would not be going anywhere.  Mom wanted to be home so I could Skype on my phone and allow them to see my Uncle.  Lyn was mad and took a passive aggressive approach.  Mom offered to cook bacon and eggs for breakfast.  Lyn likes bacon but indicated she wanted only one slice and one scrambled egg.  When Mom asked if Lyn really didn't want breakfast, Lyn confirmed and stomped off to her room.  Mom muttered "I bet if we went out, you'd eat a full breakfast."  Lyn came flying in from her room.  "Where are we going to eat?"  Clearly, her deafness is selective.

Because of the challenges around selecting food, Mom is no longer asking Lyn what she wants for dinner.  Mom is just fixing the meal.  Lyn isn't always happy about it, but she's eating.  The issue here is that Lyn doesn't know what she wants.  She genuinely doesn't.  She also often decides that what is being offered isn't want she really wants and expresses disapproval.  The constant criticism wears on Mom even though Mom knows Lyn isn't doing it intentionally or trying to be mean.  It is a side-effect of living in Alzheimer's world.

Friday, October 14, 2016

Heading to TN

I'm heading to TN this morning to help my Uncle for a few days.

He and I had to spell out the ground rules for the visit.  He's not to argue with me when I buy groceries and I'm not to argue with him about where I sleep.  I will be stocking the kitchen and leaving behind prepared meals.  He's insistent that I stay at the house and not get a hotel room.

If we were closer geographically, I would have just cooked and brought him meals and the rules discussion would not have been necessary.  We're both obstinate though and the rules discussion got him to laugh.


Posting will resume on Tuesday.

Wednesday, October 12, 2016

Identification

In Tuesday's mail, I received an envelope from Lyn.  She had made a couple of Halloween cards for us and asked Mom to mail them.  I picked up the phone and called her.  Mom answered and I quickly realized I was interrupting their dinner.  I promised to keep it quick.

Lyn didn't figure out who was calling when Mom passed her the phone.  She was confused about who would call and ask to speak with her.

Lyn: Hello?
Me: Hi!  It's S.  I just...
Lyn: WHO?
Me: I am S.  Your sister.  S.

I could tell when it clicked with her.  It was marked enough that even Mom noted the confusion and struggle to identify me.

Hopefully, it was just a momentary blip.

Tuesday, October 11, 2016

Intermittent Outages

Blogging may be spotty this week and next.

My Aunt in Tennessee passed on Friday.  Lyn has been told.  There was a lot of tears that afternoon.  On Saturday and Sunday, she was angry and disagreeable about nearly everything.  She didn't know why she was out of sorts.

Mom and Lyn will not be traveling again.  Lyn is was really set back by the last trip.  Her language skills have declined in the last two months pretty significantly.  Her shadowing and agitation have increased as well.

While they can't travel, my employer has a bereavement policy which can be described as humane.  I hate to call it generous (it is) because letting people have a reasonable amount of time to tend to family matters will allow them to be better employees.  At the end of the week, I'll head to my uncle's to spend a couple of days with him.  I will be back early next week.

Between the trip and my team's project going to release at the office this week, I'm distracted at the moment.


Wednesday, October 5, 2016

Alzheimer's Plans

As I write this, I'm pre-gaming for the Vice Presidential debate.  I'm taking one for the team here.  It's a Dark and Stormy (ginger beer and rum) kind of night but I'm drinking it on your behalf.  I need the fortification as I wade into the platforms of the presidential candidates before the debate to see who says what about Alzheimer's, dementia or health care.

I will list my findings in alphabetical order so as to not highlight any one candidate preferentially.  I am limiting the links to either existing law or to their platform positions on their official sites.

Hillary Clinton
Mrs. Clinton commits to $2 Billion in annual research funding for Alzheimer's and related diseases.  She plans to work with Congress to reauthorize the Missing Alzheimer's Disease Patient Alert Program.  She also wants Medicare to cover comprehensive Alzheimer's care planning sessions and for Social Security to do more to inform seniors of the benefits they receive through Medicare such as wellness visits and cognitive screenings.  You can find out more at her issue page titled An End to Alzheimer's Disease and her position on health care in general.

Gary Johnson
Mr. Johnson has no issue statement on Alzheimer's, dementia or health care.

Jill Stein
Ms. Stein supports a single-payer public insurance program for everyone.  There are no details in her platform beyond that.

Donald Trump
Mr. Trump's position is that the Affordable Care Act should be repealed in favor of Health Savings Accounts.  There are no details in his platform beyond that.

And with that, I'm off to watch Kaine and Pence duke it out.  Please let there be actual policies discussed!!  *fingers crossed*

Tuesday, October 4, 2016

A Perfect Picnic

Mom and Lyn took Lyn's former manager from Wendy's out for a picnic at one of their favorite spots.  They visited Quarai out near Mountaineer.

When they arrived, they were very surprised to se a work crew and a large truck handling tables and lighting for a special event.  Not wanting to get in the way of the work, they checked with the park ranger who assured them they could use the picnic tables and enjoy the monument.

The crew was taking everything down and the special event, a wedding, had happened the previous night.  Lyn was very entertained by watching the men and was able to learn that lights had been installed in the cotton wood trees, spotlighting the ruins.  They had also lined the paths with luminarias so the guests could stroll the paths which are normally not lit after dark.  It is a beautiful location and I'm sure the event the night before was lovely.

After they lunched, Lyn led Mom and her former manager along the paths.  Lyn was happy.  She had two of her favorite people at hand and was the center of attention.


They were able to be home in the afternoon while the light was still strong.  Lyn was exhausted but content.  It was a good day and Nikka was waiting for her.

Monday, October 3, 2016

Balloon Landing

The 2016 Albuquerque International Balloon Fiesta started on Saturday.  It is the largest hot air ballooning event in the world and Lyn gets excited to see the increase in balloons every year.  She doesn't realize that most of the world doesn't get to see hot air balloons floating above on a nearly daily basis.

It doesn't matter to Lyn if she sees one a day, 10 a day or 500 in a day.  She loves seeing them and if one drifts near the house, she hurries out to watch it.  On Saturday, she got to watch one land in the field across from the house.



She loves to watch them and reported that the landing was perfect.  For Lyn, it was the perfect start of  the fiesta.

Wednesday, September 28, 2016

Having Fun

Lyn likes to visit an arcade in town.  They have some games like Whack-a-Mole and Skee Ball that she can play and earn tickets for her score.  She saves up her tickets.  When she has enough, she trades them in for things like her Cinderella and Minnie Mouse banks or the framed poster of the Disney Princesses which now hangs in her room.

Last week, her Community Access provider took her to the arcade and took a picture.  Lyn instructed Mom to send it to me for the blog because the picture was a good one.


Any picture in which we get a smile counts as a good one.

Tuesday, September 27, 2016

Your Vote = Impact

I got a bit distracted by last night's Presidential debate.  It was a hot mess if ever I've seen one.

Regardless of where you stand on the political spectrum, please be aware that who is elected can have a direct impact on the funding of and research for a treatment for a disease.  It doesn't matter if the disease is prostate cancer or Alzheimer's.

The President sets the budget for Congress.  It, of course, gets modified by Congress.  If the President has concern about the health of the populace or a desire to help find a prevention or cure, the President can include a line item in the budget.

The President signs into law bills which provide additional funding such as the $122 Million increase in funding for Alzheimer's research which was passed in 2014.  The President may also issue executive orders such as the one in 2009 to support ethical embryonic stem cell research.

The President also appoints a number of science and health related positions.  As a result of the appointments, the President's appointees have direct impact upon how programs are implemented, how funds are used.  For example, the President appoints the Director of the National Institutes of Health.  The NIH, in turn, then provides substantial funding to research programs at a number of universities and other institutions around the country which are trying to find a cure to any number of diseases, Alzheimer's included.

As you consider for whom you will vote, consider where the candidates are on issues.  Look beyond appearances and the attacks on other candidates and consider their positions on the issues.



Additional Information:

Who Picks Up the Tab for Science
Impact Report: 100 Examples of President Obama's Leadership in Science, Technology, and Innovation
Fact Sheet: President Obama's Precision Medicine Initiative
Compare Presidential Candidates
Clinton vs Trump: Your Blind "Issues Taste Test"
US Election: Where Trump and Clinton Stand on Key Issues


Monday, September 26, 2016

In Memorium: Isabel

Last week, my last Great Aunt passed away.  (Not my aunt in Tennessee.)  She was 93.

Aunt Isabel was the second to youngest of the ten children which made up the Hazlewood family.  She was my grandmother's youngest sister and one of her first students.  Her first career was as a nun.  She was passionate about her faith but the demands of her calling were detrimental her health and she was granted a release from her vows.  Her second career, the one that lasted until her retirement, was as a school librarian.

She was a feisty lady who gave very precise answers.  Some may say she was difficult.

Aunt Isabel and Uncle Garth

She loved New Mexico and life in the small town of Moriarty where she lived for as long as she was capable.  Her home was on the plain on the outskirts of town.  You turned at the pink house to find hers.  Her garden was tidy and she grew the biggest carrots I've seen, many with two or three legs.  Pulling carrots from her garden was a feat of strength and perseverance.  She taught me how to use a weed-wacker.  Her spot of grass was too small to bother with a lawn mower.

She loved to read and loved that I did too.  She gave me my first exposure to Tolkien and Kipling, to Shakespeare and Pearl S. Buck.  When the school where she worked retired books, she would pick out the good ones and pass them to me.  It didn't matter if the books were higher than my grade level. She knew they would be read.

Once, my grandmother wanted to take me on the train.  She and I rode North and Aunt Isabel met us at the train station in Las Vegas.  She drove us back to Albuquerque in her El Camino and we stopped for dinner on the way.  It was a grand adventure to be out with my Grandma and Aunt Isabelle.

Years ago, Aunt Isabel made arrangements for her care.  While it was not diagnosed, to my knowledge, she had dementia; most likely Alzheimer's.  Four of the five Hazlewood women had it.




Friday, September 23, 2016

Travel is Trauma

When you think of travel you probably think of the fun or the business you have scheduled once you reach your destination.  If you're flying, you may complain about having to go through airport security or the stress of a delayed or canceled flight.  If you're driving, you may have your stops plotted out so you know you won't run out of gas.  When you travel and have dementia, you're actually courting trauma.

We knew that travel could have a negative impact on Lyn's abilities.  What we didn't realize until her doctor's visit at the start of the week was that Lyn would respond to the travel as though it was trauma.  The travel of trauma comes from being removed from your familiar environment.  It comes from not remembering where you are going, who you will be seeing or if you will return.  It comes from the change in schedule or the lack of a schedule.  It comes from the stress of travel itself.

Normally, when you travel, you have time to mentally prepare for your trip.  You may know weeks or months in advance that you're going.  You think about it.  You plan it.  You anticipate it.  When a family emergency comes up, you respond quickly but you have the emotional and mental resilience to respond to the stresses of the family emergency.  Lyn had none of that.

The trip to Tennessee was a sudden one.  It was brought to Lyn's attention the night before they left because the decision to go was made just hours before she was told.  She didn't have time to mentally prepare for the trip.  The next morning, they got in the car and drove 1,500 miles.  Lyn could focus on  the destination being where our Aunt and Uncle live.  She couldn't understand the where or the what of Tennessee.

Seeing our Aunt in the hospital was another trauma.  Lyn knows she's dying and is quick to point out that God will decided when our Aunt dies.  Lyn hasn't had a hospital stay since her birth.  She doesn't remember when Mom had one 30+ years ago.  She didn't see me in the hospital when I delivered my child.  What she saw was someone she loves very much in the hospital due to a critical illness and she knew that there was nothing they could do.  She also knew that this trip was the last time she was likely to see our Aunt.  Despite keeping it together in the hospital, it was traumatizing to her.

Despite the urgent nature of the trip, Mom recognized that Lyn needed interventions which others may not have needed.  They drove not due to finances.  They drove because it would prevent Lyn from having to go through the stress of airport security, needing a note from the doctor explaining that Lyn has dementia or risking an encounter with staff who would not facilitate a smooth transition for Lyn.  They drove because if Lyn got anxious and needed a break, Mom could pull off so they could get out of the car.  You can't do that with a plane.  Mom built in a trip to Dollywood and stopped at a massive outdoor sporting goods store to cater to Lyn's desire for entertainment and shopping.

Looking back, would we subject Lyn to the trip again knowing the impact on her?  Yes.  The trip was the right thing to do because of the nature of it.  Will we put Lyn on a plane to bring her to visit my family in VA?  No.  Subjecting her to that level of trauma just so we can have fun would not be right.

Thursday, September 22, 2016

First Day of Fall

Conversations with Lyn can feel like an Abbott and Costello routine.

Mom writes:

On the way home, I said something about today being the end of Summer.

She said she didn't understand.  "What is Summer?"

Mom: "It's the time when it gets hot.  First, we have Winter when it's cold.  Then, Spring when it starts getting warmer.  Summer is hot.  Then, Fall when it starts getting cooler."

Lyn: "So is Summer hot or cold time?"

Mom: "It's hot time."

Lyn: "So, is it going to be hot time now?"

Mom: "No, it's going to be cooler.  It's Fall or Autumn. "

Lyn: "OK, it'll be cold time."

Mom: "The mornings are cool but the afternoon like today will be hot."

Lyn: "Then it's something else?"

Mom: "Yes, it's something else. "

Lyn: "What?"

Mom: "I don't remember."   I was dizzy from going in circles. 

Wednesday, September 21, 2016

Check Up Time

Lyn had a check up with her doctor on Monday.

The Stats:
Weight: down by 3 lbs.
BP: 102/70
Labs ordered: CBC and Sed Rate, Ultrasound scheduled to check the lump under her chin.

The doctor believes that the verbal skills loss which we noticed since Mom and Lyn drove out to TN to visit my Aunt is permanent.  We've heard of Alzheimer's patients getting worse after a trip and knew that was a possibility.  However, there are times when you have to take the risk and go for it.

As noted above, Lyn's doctor is concerned about a painful lump under Lyn's chin.  It has been there for years.  It would swell before her period started and then go down afterwards.  Now, it is always swollen but does get more tender during her period.  An ultrasound and the blood tests are being done to see if they can determine what the lump is or what can be done to ease her discomfort from it.

Lyn's received her flu shot for the year.

As Mom hung up from scheduling the ultrasound, Lyn informed Mom that she doesn't "need to worry about my appointments because I can take care of them."

Good to know.

Tuesday, September 20, 2016

Contemplating Dignity in Death

A friend called me at the end of the week, upset about her mother's struggle with late stage Alzheimer's.  We talked for some time about various aspects of her mother's care.  At the same time, I've been closely monitoring my Aunt's health which is rapidly failing.  In both cases, there has been difficulty getting the need for hospice care to be accepted by one family member or another.  In both cases, an immediate family member has taken on the majority of the care.  These two situations have led me to contemplate the role of dignity in a person's death for the past several days.

(First, let me be very clear.  For this post, I am going to be speaking in terms of providing palliative care and not artificially extending an individual's life.  I am not speaking of the Death with Dignity movement which advocates for physician-assisted death.  I personally do not have a problem with a person seeking to end their life when facing a terminal diagnosis.  It is just not the focus of this post.  Additionally, this post is not calling out the behavior of anyone involved in the care of the individuals mentioned in the opening.  These are just my thoughts which have been percolating as these two individuals approach their deaths with their families by their sides.)

You may have heard the concept of allowing a person to die with dignity.  The term may feel loaded but there are some pretty basic concepts.  Essentially when we allow a person to die with dignity, we're actually allowing for two things.  First, we're allowing the person to be involved with the decisions about their care.  Second, we are doing things which prevent the person from being subjected to indignities.  If we can achieve those two criteria, we can help the person die with dignity.

When a person is facing the end of their life, it is still important that we allow the person to be involved with the decisions about their care to the maximum extent that they can be engaged.  If they cannot be engaged and decisions about their care must be made by someone who has medical power of attorney, then that individual should be evaluating each treatment and each medical decision through the lens of "what would she want"; not "what do I want for her."

There are many times when an individual remains mentally competent as they are dying.  They may deliberately choose to not seek invasive or extensive treatment which may extend their life.  It is their choice to make and it should be respected.  However, respect towards the individual should also be paid on the little decisions.  For example, a patient may be shaky and weak and unable to easily feed himself.  To respect that person's dignity, we should not take the spoon or cup from their hands and take over the feeding activity without first either offering assistance (and having the offer accepted) or receiving a request for assistance.  The action, no matter how well intentioned, demeans the person by indicating that their desires are not relevant to their care.

How can we respect a person's dignity by allowing or encouraging their participation in their care?  Here's a short list:

  • Ask - Ask if she wants her blue gown or the green one.  Ask if he wants assistance to walk down the hall.  Ask if she needs a hand fixing her hair or if he needs help brushing his teeth.  Ask about anything and everything.  Ask about what they would want should their disease prevent them from making decisions in the future.  Ask what they want done with their body when they die.
  • Listen - When you ask a question, stop and listen.  Don't move the moment you hear a response but listen to the response.  You might have thought they wanted the green and find that the blue gown is today's preference.  Their diagnosis will rarely render them suddenly incapable of making a decision.  Invalid is not the same as infant.  Even Lyn has opinions about what she wants or doesn't want.  She should be able to express them for as long as possible and we should respect them.
  • Act according to the person's desires - If the person's desire does no harm, then do as they ask.  If they want a piece of pie for lunch, then let them have a piece of pie for lunch even if you were hoping to save it for yourself.  So, that seems pretty obvious, but there's a gray line with which some people may struggle.  What if the person is asking to cease a medical treatment?  What if they don't want to have any more chemo or another surgery and refuse treatment?  They're going to get sicker.  Isn't that doing harm?  It is their choice to cease treatment and allow the disease to take its course.
The second aspect of allowing a person to die with dignity is where compassion comes to bear.  When we seek to remove the things which cause indignity, we look for those actions or interventions which will remove pain, shame, or embarrassment.

  • Manage Pain - If the person is in pain, provide them with the medications needed to help ease the pain.  Physical contact can also provide comfort.  Hold their hand.  Provide light massage or even brush their hair.  
  • Provide Compassion - Shame and embarrassment may come up as a result of the person's increasing inability to care for him- or herself.  Smooth out those moments when they may no longer have control over their body.  If they vomit and miss the pail, assure them that it's OK even if you are holding back your own gagging reflex.  If they are not able to control their bladder or bowels, help them with proper undergarments and hygiene to stave off an infection.  Never let the person feel as if they are an imposition or a burden to you.  It is not their fault when these events happen and they may be mortified at their lack of bodily control.  The compassion is not just about the big messes.  It also is needed in the daily care of the person.  If a person always was well manicured, keep up their nail care.  Even if they didn't love a particular shade of red, at least keep their nails neatly trimmed.  Make sure they are regularly cleaned up and their hair is tidy.  Think about how refreshing it is for you when you step out of the shower.  Help the person feel put together and clean too.  
Death is not always a sudden event.  It can be a slow process.  Allowing death to happen while helping maintain the dignity of the person who is dying is an act that honors that person.  It is an act of love.  It may be deeply painful to let the person go but it is an act of kindness to do so.  Fighting to keep the person alive because you are not ready for their death is actually selfish and not a battle you will win.  

Wednesday, September 14, 2016

Sleep Confusion

On Monday, Lyn was exhausted when she got home from day hab.  She wanted to go to bed right away but Mom kept her up until just after dinner.  Even then, Lyn was in bed by 5pm.  About 6:15, she woke up and came into the living room.

Mom asked if she just took a nap.  Lyn looked at her as if she was crazy.  She turned around and walked back to the bathroom.  After several minutes, Lyn didn't come back and Mom checked on her.  Lyn was fine; just in the bathroom still.  When Lyn returned to her bedroom, Mom again went to check on her.

She had opened her window blinds and was making her bed.  When Mom asked if she was making it, Lyn denied it and said "I was going to sit on it."  Mom invited to Lyn to come into the living room to watch some Wheel of Fortune.  Lyn did and indicated she didn't know if it was morning or not.

Mom wrote me an email to let me know and included that her "heart was crying."

I was writing yesterday's blog post when she hit Send and I received the note right away.  I picked up the phone and called.  I call in the evening most of the time and I thought a call might help Lyn feel like it was evening.  We had a pretty routine conversation and she decided I was too tired to talk after a couple of minutes.  That's also normal.

Once the Sun set, Mom was able to tuck Lyn back into bed.

Tuesday, September 13, 2016

Off to the Play

On Sunday, Mom and Lyn went to see a performance of Auntie Mame.  She writes:

"Just got back from Little Theater where we saw Auntie Mame.  She LOVED it, all three hrs.  She laughed appropriately but I'm never sure if she caught what was said.  Probably not.  She clapped.  During one scene where the cast was trying to sit in very low couches, she laughed because it was funny.  About 30 minutes before it ended we heard thunder and rain.  HARD.  All I could think of was that I'd left windows open.  She was concerned about the dog.  We were going to stop and get something to eat but didn't.  Came straight home through a downpour.  On the way home she was smiling and thanked me three times for taking her.  In May, we'll go see Mary Poppins."

I'm glad that they're still able to enjoy such outings.

Monday, September 12, 2016

Steve Harvey Said

Both Mom and Lyn enjoy watching Steve Harvey, particularly when he's hosting Family Feud.  This weekend, Lyn was watching an episode.

Steve Harvey said "Tell me something a wife lets her husband do on his birthday that she usually doesn't."

Lyn called out "SPANK HIM!"

Mom had a choking fit trying to stifle her laughter.

Friday, September 9, 2016

Saying Good Bye

The wife of a family friend passed away last week as a result of cancer.

The family friend is the woman who served as Lyn's manager for years when she worked at Wendy's.  Though Lyn retired from work years ago, they have remained in contact.  Mom and Lyn still deliver homemade peanut butter cookies to her.  They delivered a batch this week.

Mom intends to attend the funeral, having made arrangements for Lyn to be with her respite provider.  Lyn has been crying off and on about the death of her friend's wife since learning of it.

At the same time, our Aunt is struggling with her own cancer and has a grim prognosis.  Lyn and Mom were taking about our Aunt and Lyn started crying again.  Mom tried to redirect her and assure her that she's being cared for.  Lyn revealed she wasn't upset about our Aunt.  She was crying over the deceased whom she claimed "to have loved my whole life!"  Mom again tried to redirect and assure her that she was no longer suffering or in pain.  The drama was high and Lyn wailed about how no one understands her worries.

Mom shared Lyn's grief with our family friend and they were both able to chuckle about it.  She was glad to know that someone was crying as much as she has been over her wife.  She also amused by the hyperbole in Lyn's grief.  Lyn's grief is real.  Her ability to express it is a bit garbled and it has evoked smiles as a result.

Wednesday, September 7, 2016

The Invisible Economy

Think of the families you know where an individual needs care due to a medical condition such as Alzheimer's or cancer or major disability such as Lyn's intellectual disability.  Regardless of the needs or ages of the individuals, these families share a common need.  They need a one or more care givers.

Caregivers are needed to administer medication and follow a medical plan.  They are needed to prepare food and may even need to feed the person for whom they provide care.  They may help bathe and groom the person.  They may help with toiling concerns.  They may even have to help transfer the person from one location to another such as from the bed to a chair or from a chair to the toilet or from the house to a car.

How much would you pay to have someone provide that assistance?  The average salary appears to be about $20,000.  In my area, a care giver makes about $29,000 a year according to glassdoor.  Hourly ranges on that link range from $8 to $13.  That doesn't seem like a lot me be when I think of the duties they perform.  But what if you can't afford that?

There are some social programs which help.  For example, Lyn has access to New Mexico's Disability Waiver program which provides her the services she receives.  Many states have elder care programs.  Even then, families may struggle and have to rely upon "informal caregivers."

Informal caregivers are those friends and family members who provide the care for individuals who need it.  They are mostly volunteers and not paid or trained professionals.  They may receive some benefits for the work they do by being granted access to or eventual ownership of assets but most do not.  Mom, for example, inherited the house after caring for my Grandma for 10 years.

How prevalent is the informal caregiver role?  In 2014, New Mexico reported 184,500 informal caregivers who accounted for 198 million hours of care.  While some may only provide a few hours of care a week, others are providing full-time, round the clock, 24/7 care.  The simple math reveals that 184,500 caregivers are putting in over 1,000 hours of care each and this equates to 40 hours of work for 26 weeks.  In Virginia in 2014, there were 740,400 informal caregivers who provided 793 million hours of care.  The average of 40 hours of work for 26 weeks is the same.  In 2008, the CDC reported there were more than 34 million caregivers nationally.  Their statistic only counts those providing care to someone aged 18 and older.  It overlooks those who provide care for minors who are seriously ill or disabled.  If we assign the average salary of $20,000 to all of these care givers and if we use the average of 50% work, then we're looking at $3,400,000,000,000 worth of unrecognized services provided which is about the GDP of Germany.  (Caveat: my math may be off but I think you get the point.)

We're asking all of these millions of informal caregivers to do what they do with little support or training.


Additional Information:
Family Caregiver Alliance

Tuesday, September 6, 2016

Aducanumab

If you pay attention to the news about Alzheimer's, then I'm sure you at least caught the headline that a new drug is showing promise in trials currently.

The drug is aducanumab and the test was a phase 2 study which has lasted for a year with a very small set of participants, just 165 people.  The test was designed to determine if the medication is safe for humans to take.  Of the 165 participants, some dropped out due to side effects such as headaches, build up of fluid on the brain or brain bleeds.  Reports on the number of drop-outs vary from 20 to 40 participants.  While the phase 2 study was focused on safety, the scientists determined that it was clearing the build up of amyloid beta from the participants brains as intended.

Phase 3 tests will focus on the effectiveness of the drug and will include a much larger number of participants.  Phase 3 tests have begun and will take at least 18 months to complete.  Patients will undergo monthly infusions and regular testing to determine if aducanumab helps to slow their cognitive decline in addition to clearing the plaques.  While each test cycle will take 18 months, there will be multiple test cycles which will continue into 2022.

We're still years from seeing this medication or any other readily available on the market.  However, if the phase 3 tests go well, we may be just 5 or 6 years away and that, my friends, may be a game changer.

*Fingers crossed*

Wednesday, August 31, 2016

Not Processing Well

Mom writes:

"I realized over the past couple days how she has really regressed.  Her speech is jumbled.  Her confusion has increased.  As we left dayhab today, before we got to the car, I asked if she had another good day.  She didn't answer for a few minutes until I asked what she did today.

"I don't know.  I don't remember what I did."  I asked if she had fun.  "I guess."

Then she began telling me about being told she could open a box of pictures.  When asked what the pictures were about she didn't know.  "People doing things.  Maybe playing with a ball."  So I asked if they were pics of other clients.  "No, from books."

By this time we were less than a mile from dayhab.

This morning I said I didn't know what to fix for dinner.  "I knew but don't remember."  I then asked about a steak.  "No."  What about meatloaf?  "no."  How about chicken?  "I don't think I like chicken."  So I dropped it and we talked about the balloon that landed across the street.  However, when we were almost home I said I'm going to grill drumsticks.  "Oh good.  I like them."

At least I'm not fixing chicken."

Tuesday, August 30, 2016

Gene Wilder

It is with sadness that we learned yesterday of Gene Wilder's death.  He was a phenomenal actor who delighted so many of us over the years in which he performed.  His passing has filled many with remembrances of his work and tributes for what he meant to them are being widely shared.  In the announcement from his family, it was revealed that Mr. Wilder had been diagnosed with Alzheimer's three years ago.  

On the news, Lyn heard the obituary and and its reference to Alzheimer's and panicked.  "Did he die of Alzheimer's?  Does it make people die?"  Mom explained to Lyn that he was 83 and that the Alzheimer's found in senior citizens is different than the kind she has.  Mom also pointed out that everyone dies eventually.  Lyn accepted these statements and settled down.

She was clearly afraid that if he died from Alzheimer's then she will too.  We don't tell her that.

Monday, August 29, 2016

Of Carpet Care

In our Skype conversation, Lyn took an opportunity to stress that Mom should not vacuum her room. I asked her why and she struggled to say that she just doesn't like it.  A week ago, she did say she didn't like the way it looked.  We asked her if she liked her room clean or dirty.  Dirty was her preference.  We asked her if it would bother her to walk on dirty carpet.  It would not bother her because she wears socks all the time.  She didn't care about dust which blows in from her windows, dirt tracked in on her shoes or hair shed by her or Nikka.

So, Mom agreed that she heard and understood what Lyn was saying.  Mom did not agree to forgo the vacuuming.

Lyn didn't notice that Mom had vacuumed her room this week as well.  After she had run the vacuum, Mom had walked around Lyn's room several times to disrupt the straight lines from the vacuuming.  Problem solved.

Thursday, August 25, 2016

Sharing a bit of wisdom

A friend of mine told me about Wisdo, a website for sharing the wisdom you have acquired from life's journeys.  She invited me to participate in a path about adoption.  Last night, I sat down and wrote up about 15 steps connected to dealing with dementia and submitted them for publication consideration.

I don't know what paths Wisdo plans to include over time.  Their initial offerings include adoption, divorce, coming out, coping with loss and others.  I think the concept is very interesting and has great potential.  If I can help support it, I'm happy to do so.

Check it out!

Tuesday, August 23, 2016

To Light the Night

A couple of weeks ago during our Skype conversation, Lyn was very agitated.  She told us that she needed more light at night.  She didn't feel that the three nightlights were enough.

She has one in her room, one in the hall way, and one in the bathroom.  While that may be enough light for many of us, it isn't enough for her.  Alzheimer's makes it difficult for her to interpret the shadows.  Her environment looks different when it is dark and it can cause anxiety if she doesn't recognize where she is.  The request was actually reasonable when you think of it from her perspective.

Mom and I asked Lyn where she wants the new night light.  Lyn said they needed to leave to go buy another nightlight right away and then she could decide.  Mom said that leaving wasn't necessary because there was an extra nightlight in the house already.  Lyn was not pleased with that answer.

We have let the topic sit since then.

On Monday, Mom asked Lyn where she wanted the extra nightlight and received The Look.  Lyn proceeded to explain that another nightlight was not needed because they have enough already.  Mom didn't try to remind Lyn of the conversation.  It would have just made Lyn mad because she cannot remember.  Mom played it off as though she was just wondering if they needed more or if there was enough.

For now, the spare nightlight is on the shelf until it is needed.

Monday, August 22, 2016

She Doesn't Like

Lyn has reprimanded Mom on many occasions for folding her clothes, for hanging her clothes, or for cleaning her bathroom.  We can add another thing Lyn doesn't like to the list.

Lyn stripped her bed before she left to go bowling with her respite provider.  While she was gone, Mom put fresh sheets on the bed and then ran the vacuum.  When Lyn got home, she went to put her bowling ball away in her room and came storming back out, interrupting the conversation Mom was having with the respite provider.

"You know I don't like that!" she sputtered.
"You don't like what?"
"I don't like my room vacuumed!" The respite provider burst out laughing and Lyn shot her The Look.
"I didn't realize that using the vacuum wasn't allowed in your room." Mom remained calm.

The respite provider asked why she didn't like her room being vacuumed and got a response of "I don't like the way it looks."  Lyn didn't budge in her opinion when asked posed with the scenario of a stone or thorn being stepped on.

When Mom tucked Lyn into bed, Lyn reminded Mom that the next time she cleans she doesn't need to do Lyn's room.  I'm sure that Mom will conveniently forget that Lyn doesn't like her room cleaned and will do it again.  Lyn may forget that she doesn't like having the room clean and accept it.

Thursday, August 18, 2016

At the Owl

Lyn went to out to lunch with her Community Access provider this week.  She was very happy because they went to the Owl Cafe, a 50s style diner in a nifty building.    Mom asked if she had a cheeseburger for lunch.  "No." Lyn corrected.  "I had a hamburger with cheese on it."

A hamburger with cheese on it sounds better than a cheeseburger.

She's having a harder time parsing big words.

Wednesday, August 17, 2016

Training Legislation

On Monday, the governor of Illinois signed legislation into law which outlines the training that caregivers of Alzheimer's patients should undergo.  The law is immediately effective and applies to all types of dementias.

The law outlines how many hours caregiving staff should undergo to get initial training and annual follow up training.  This is good.  They are trying to provide a base set of guidelines for all professional caregivers.  Please note the inclusion of the word "professional" in the previous sentence.  The way this law is written, it mentions "staff."  It does not mention unpaid caregivers such as family members.

I recognize that volunteer or familial caregivers are not regulated.  However, I do feel strongly that all caregivers should have the opportunity to learn of training opportunities.  I would like to see these classes advertised and made available to the public; not just professional caregivers.  I would like to see the unpaid caregivers highly encouraged to avail themselves of the training even if the the state decides to not force them to take the classes.

Monday, August 15, 2016

Crabby and Dizzy

Lyn's crabbiness is definitely increasing.  She's actively trying to control conversations around her.  She's correcting Mom and telling her to stop talking about... well, pick a topic.  This has been going on for days.  When we Skyped on Saturday, Mom and I tried to start a conversation on one topic after another and Lyn would tell us to change the topic or stop saying what we were.  So, we asked her what she wanted to talk about and got a "Not that" in response.  She didn't know what she walked to discuss.  I asked if we should talk about a quilt I'm sewing.  She thought about it and decided that was a safe topic.

She's also struggling a bit with dizziness.  She will stand up like she wants to do something or go elsewhere, freeze and then sit right back down.  Mom has observed her putting her head on her knees as well.  When asked what is wrong, Lyn says she's "just a bit dizzy."  We're keeping tabs on it.

Wednesday, August 10, 2016

Thunder

As Mom and Lyn were driving back to New Mexico, Mom couldn't help but notice a series of billboards advertising a male dance show called Australia's Thunder from Down Under.   They were to perform at one of the many casinos along I-40.

Mom asked if Lyn had seen the billboard.  She had not noticed it.  Mom explained it was a picture of 5 handsome men without their shirts.  Lyn saw no humor in this, saying they were not appropriately (unappropriated) dressed and should not have their picture taken like that.  So, each time they passed one of the billboards, Mom started making comments and Lyn eventually began to relax her attitude about them.

Mom suggested they stop and see what the thunder was all about.  Lyn replied "No.  We already drove through rain."

At the next billboard, Mom suggested they stop and see if the men want to come to Albuquerque to show Mom and Lyn their show.  Lyn replied "No.  They won't fit in our car."  Mom suggested seeing if just two of the men wanted to join them.  "No.  They can't."  Lyn didn't know why they couldn't but she was adamant.

At the next billboard, Mom suggested that she needed to stop.  She could run in and just grab one of them to come to the car.  They could quickly get on the highway with him.  Lyn asked "What would he do?"  Mom said he would be nice and show them the dance.  Mom would offer to fix him dinner.  Lyn rejected that scenario because "he has to go back."  When Mom suggested he could stay, Lyn flipped around and shot Mom one of the most intense versions of The Look yet.

As they approached the desired exit, Mom pointed out that was the exit to the men.  Lyn responded with "You can't stop.  We don't live here and the police will get mad."  Mom kept driving.  If I had been with her instead, we would have stopped.

I'd like it noted for the record that I'm not the only one to instigate with her.

Tuesday, August 9, 2016

The Funnies

Lyn's been pretty funny this past week.

Mom wrote about something which happened during their trip to visit my Aunt:
"I've always had a habit of looking at license plates to see whee people are from.  I did the same on the road last week.  Lyn got pretty good at spotting cars from TX, OK, and VA.  As we went through Arkansas and Tennessee, I would say the name of the state on the car.  However, more than once when she'd look at it she'd say "they aren't from here."  I said "Actually, they are from here but we were the strangers."  The Look....  This made no sense to her since we don't see too many cars in NM from those states.  I am proud of myself for not laughing out loud.

On Friday, after their return, Mom reached into the freezer to pull select something to thaw for dinner.  Lyn asked "Since coming back, do you remember how to make spaghetti?" Mom laughed and told Lyn she remembered. "Well, that would be easy for you to make tonight."  It was a statement; not a request.  Spaghetti was the menu that night.

On Sunday, Mom asked Lyn to tell her when she wanted lunch.  "Ok.  But do we have to have something from here?"  Mom said they would have lunch at home.  "I'm sure I can fix you something."  "I hope so," Lyn replied.