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


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.

Monday, August 8, 2016

Hospital Visits

Last week, I let you know that Mom and Lyn drove to Tennessee to visit with my Aunt and Uncle because my Aunt is in the hospital.  Lyn was happy to see them and our other relatives living in the area.   

She was upset to see my Aunt so ill but kept her tears to the times when they were not in the room with my Aunt.   Lyn was in the moment and recognized that her emotions could impact others and kept herself calm.    However, in the pictures, you can see how stiffly she's holding herself due to being uncomfortable and unsure what to do about it.

The timing of the visit, while sudden, turned out to be a good thing.  Lyn tolerated the trip better than anyone anticipated or could have hoped.  Lyn really didn't realize that they were no longer in New Mexico.  She wasn't in her routine at all  However, she was with Mom, got to eat out every day and the interactions with other people involved people she loves and/or very small groups.  As a result, she really wasn't overwhelmed or overstimulated.  

Mom, Lyn, my Aunt and Uncle all agree that the visit was a very good thing.

One closing thought for the night:  Dear Me!  My Uncle looks SO much like my Grandpa!!

Friday, August 5, 2016

Traveling Despite Dementia

It has been a bit of a nerve wracking week and I had promised to keep things under wrap here until things were resolved.

My Aunt is very ill and has been in the hospital for over a week now.  She and my Uncle had moved out of Albuquerque several months ago and settled in Tennessee.  She's been ill a long time but her condition became critical and she was placed in ICU for several days before being moved to a regular room.

Mom and her brother keep in near daily contact and Mom felt she should get out there to see them.  She felt her brother needed some extra love and support.  She told me of her decision and while part of me cringed inside, I understood the desire to go.  A trip was the right thing to do and we all acknowledged it wasn't going to be easy.

A dog sitter was found for Nikka.   Mom decided a 2,000+ mile drive with a dementia patient was easier than trying to manage flights.  The last time they flew, Lyn wanted the plane to land about 30 minutes into a very long flight.  Lyn also doesn't like driving on highways anymore.  However, she trusts Mom and so they went.

They drove for two days.  Lyn updated Mom with every road sign she spotted that they were still on I-40.  Mom had assigned this job to Lyn and she took it to heart.  Lyn had her car book and she knew they were going because our Aunt is sick and needed some love.  Lyn worked so very hard to be cooperative.  They arrived tired but determined.

It was late when they arrived and so they waited until the next day to go see my Aunt and Uncle.  My Aunt was shocked to see them, having not been told of the trip beforehand.  She was convinced they were en route to see me and it took a little work to get her to realize they had done the drive for her.  Mom and Lyn were able to visit with them for two days, making sure they didn't tire my Aunt out.

On Wednesday morning, they returned to the hospital one last time to say good bye to my Aunt before starting the long drive home.  They arrived back in Albuquerque late yesterday.  Both are relieved to be home.

Lyn has had some tears over the past week.  However, she was out of her routine and her environment.  She was upset to see my Aunt so ill.  It was all understandable and much less than what we anticipated.  She really wanted to make this work and put a lot of effort into the trip.  Mom and Lyn's visit was a gift which my Aunt and Uncle deeply appreciate.  As Mom pointed out to him, "We're family.  It's what we do."

More to follow...

Wednesday, August 3, 2016


Just a quick, little post today due to limited connectivity issues.

A friend spotted an interesting Ask Me Anything (AMA) which happened yesterday on Reddit.  I am not a Reddit reader and wouldn't have made the AMA if I was due to work obligations.  Fortunately, friends share links with me that they think I would like.  This is one of those times and I may have to start paying more attention to the AMAs.

The AMA is is with Wilfredo Colon, Ph.D. who investigates misfolding proteins.

Additional Information:

Tuesday, August 2, 2016

Be Kind

Several years ago, I encountered the online presence of Kid President and fell in love.  I have shared his pep-talks with friends and colleagues.  He is adorable and inspiring in equal measures.  His messages may seem so simple but are refreshing after some of the toxicity we encounter each day.

Yesterday, he posted "Be kind. It's not always easy, but it's always important."

This struck a chord with me.

We go through our days trying to check things off our list of what we need or want to do.  We don't always stop to think about what others are needing.  When you're a care giver, you often don't have the luxury of being selfish with your time.  You may find yourself frustrated and feeling overwhelmed.  But there may come a moment when your encounter with another person who you realize needs your kindness more than anything else right now.

Being kind to each other doesn't have to be big gestures.  Sometimes the big gestures are important and meaningful like jumping in the car and driving over to help someone you love just because you know they need your help.  Moving?  I'm there to move boxes.  Surgery to recover from?  I can make you a meal.  Having a baby?  Let me make you a blanket/stuffed toy/bibs or all of the above.  At other times, being kind can be as small as one sentence.  "You have a great smile!"  "Your scarf is beautiful."  "Let me get that for you."  Recently, I saw adults cry when they were told "I'm proud of you."

I worry about the tone of certain dialogues in the US right now.  I worry that it feels like we are increasingly in-tolerant of each other and I deeply hope that reality is different than what we see in our Facebook feeds or on the news.  Sometimes, I call Mom and Lyn and just listen to them tell me about their day because it puts a different perspective on things for me.  They both appreciate the call and consider it a kindness that I check on them frequently.  They don't realize I benefit from it as well.

Be kind to each other.