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.