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.