Monday, October 31, 2016


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


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


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.