Monitoring Her Intake

Lyn's not eating as well as she normally did.

She hates eating breakfast.  She might eat a reasonable lunch.  She is not really snacking any more.  Dinner is maybe 6 bites.  Mom has been counting the bites to keep track of what she's eating.  What she doesn't eat at dinner, she will often have as the next day's lunch.  In essence, this means she's eating only one meal's worth a day.

We recognize that one meal equivalent a day is not terrible.  However, it is a significant change for her. For example, Mom offered one of Lyn's favorite meals of spaghetti earlier this week.  She literally ate 6 bites.

Dementia commonly causes patients to forget to eat, to forget that they might be hungry or to not even feel hunger.  As vision is impacted the patient may have difficulty even seeing the food on the plate in front of the individual.  Mom is serving Lyn off of red plates to increase the visual contrast between the food and the plate.  She is maintaining regular mealtimes and telling Lyn that it is time to eat.  She is also prompting during the course of the meal to try to keep her moving.  None of these seem to be making much of a difference.

Beach Visit

Who wears shorts to the beach on a hot and sunny day?

Not my sister!

We had to work to convince her to take off her shoes.  It was a good day.

Perceptive

I wish, sometimes, that we could understand the minds and perceptions of the animals around us.  I have long believe that their stronger sense of smell and their observational focus on their environment allows them to clue in sometimes to somethings we are unable to fully piece together.

We have previously noted that Nikka is particularly focused on Lyn.  She decided Lyn was her person the day that Mom made Lyn accompany her to a dog adoption event in the hopes of finding Mom a new dog.  We've also observed when Lyn seems "off" that Nikka positions herself more closely to her. We are starting to think there's a pattern in play and we'll be taking closer notes of both of their behaviors going forward.  Here's why...

If you recall, Lyn's complained of a particular point on her scalp, saying it is very painful.  The doctor's found nothing upon examination.  However, we suspect that something more than just a simple headache is in play.  We're starting to think that the painful spot complaint precedes an "off" day.   She complained of this spot again on Saturday.  On Sunday, she was off and cried more than once during the day.  We now wonder if these two things are connected.

So, how does Nikka factor in here?  She was preoccupied on Sunday, shadowing Lyn more than she has ever done.  She cried when Lyn went to take a bath.  Afterwards, she spun a couple of 560's and got Lyn to laugh just before she launched herself into Lyn's lap.  Lyn was sitting on the couch, tears rolling down her cheeks.  Nikka's not allowed on the furniture but Lyn did nothing to get her down.  When Mom asked what they were doing, Lyn told Mom that Nikka needed attention as she put her arm around the dog.  Nikka curled up and put her head in Lyn's lap.  For the rest of the night, if Lyn was up, Nikka kept in physical contact with her.  Mom decided to not fight it.

When Lyn went to bed at 6:15, the dog followed and would have gotten on the bed if Mom hadn't stopped her.  It took four attempts to get Nikka to come out of Lyn's room.  She didn't want to leave Lyn.  Upon returning to the living room, Nikka didn't attempt to get back on the couch.  She did, however, keep going back to check on Lyn.  

On Monday, Lyn was still off and Nikka was still in near constant physical contact.  In the evening, Nikka again was up on the couch with her and followed her to the bathroom.  Mom has decided to not interfere with whatever is going on and triggering Nikka to become more protective of Lyn.  Instead, we'll continue to observe and see if the head pains really do precede an off day for Lyn and a more protective day from Nikka.

If only we could understand what her senses are telling her...

Skype Tears

Yesterday, Lyn burst into tears during our Skype conversation.  There was no obvious trigger.  However, I could tell she was off the whole conversation.

We quickly disconnected and Mom went to console her.  Lyn didn't know why she was upset.  "My brain was doing weird things and I don't know why."  She couldn't tell Mom was her brain was doing. This was not the first time she was in tears on Sunday either.

Earlier in the day, she wanted to make a picture for her former manager at Wendy's.  She couldn't decide on which paper to use.  Mom helped her figure that out.  Then she didn't know what do draw.  Mom suggested flowers so she traced a cookie cutter.  Then she didn't know what else to put on it.  Mom suggested she use one of her stamps.  "Yeah that will work."  Mom then came back in the living room.  Lyn came down the hall about two minutes later in tears saying "I don't know what else to do."  

She spent the day two feet from Mom, spoke loudly and quickly without much in the way of connected thoughts.  Mom's getting good at "understanding" what Lyn says or guessing what she needs quite well.  This type of behavior is exhausting but also typical for Alzheimer's.

The Lights Were Out

Last night after bowling, Lyn and her respite provider went to Cracker Barrel for dinner.  Lyn has been wanting to go there more and more with her respite provider because she "feels comfortable there and knows the menu."

When they arrived, they find the electricity was out in the area and the restaurant was having to turn away customers.  This upset her so much that she didn't know what to do or where to go.  Her respite provider was unable to redirect her and they ended up calling home.  Mom suggested they go to McDonalds because Lyn likes their hamburgers.  Unfortunately, Lyn didn't remember that she liked McDonalds or what she ordered there.  Lyn asked if it was OK if she just came home because she didn't know what to do.

Mom was able to tell Lyn's respite provider what Lyn would eat from McDonalds.  It had been months since she had been there and Mom thought she might be happier once they arrived.  However, she knew they'd be home earlier than usual because of the disruption to Lyn's routine.

She was right.

Maintenance

Lyn's annual ISP review was today.  Each year, they try to set three new learning goals for her to achieve over the year.  When Lyn was asked what goals she wanted to set for herself, the response from her was just a blank look.  She didn't understand what they were asking.

Mom asked if new learning goals could be omitted from this year's ISP because of the difficulty Lyn is having remembering how to complete tasks she already knows.  As an example, several times a week now, Lyn will call out to Mom "Would you be happy to make my bed for me?"  Mom always agrees to do it, hearing the frustration in Lyn's voice.  When she goes in, she can tell Lyn has tried to make the bed.  She's tried and it just doesn't make sense.  When she gets frustrated, she asks Mom for help.

Mom explained that the frustration is increasing in frequency.  Learning something new is impossible at this point.  Trying to introduce a new skill would be an exercise in frustration and that leads to a bit of an aggressive attitude.

It took a couple of minutes for Lyn's team members to realize what Mom was saying.  From their perspective, the state says the client has to have three new learning goals and they were trying to keep to the state's guidelines.  Finally, one of her case managers responded with "Well, they don't like the term 'maintenance', but in this case I think our best option is to just maintain Lyn's current skills."

This decision was shared with the staff at day hab.  They agree that it is a sound decision for Lyn.  For her day hab plan, they will just carry last year's goals forward into the new year.  They have documented changes they notice with her.  At day hab, for example, they are tracking her scores on the game Memory and on her bowling.  They are also tracking how well she accomplish the same task on different days.

As a result of the ISP review today, Lyn is officially in maintenance mode.

Planning Ahead

Now, you didn't think that my thoughts yesterday were just random and unprovoked did you?  Of course not.  Mom and I have had several conversations over the past year trying to plan ahead for Lyn's needs.  One of those needs are her final needs, her funeral arrangements.  After she was diagnosed with hypoxia at night, we realized that she could pass suddenly.


The funeral will be in the church where they attend Mass.  It is the church where my parents were married and where my grandparents were members.

Lyn's obituary is written already.  It is short and will be posted here when the time is necessary.  Both Mom and I have copies of it.


We have agreed that she will be cremated.  We still need to decide where her cremains will be interred or scattered.  We have, however, agree that she'll be cremated in the same manner as Grandma.  Bear with me a moment.

When Grandma passed, we found that there were two details she left undecided upon when she made her funeral arrangements.  She did not select the container for her cremains nor the container to hold her body during the cremation.  Each state is a little different.  In New Mexico, the body that is to be cremated must be placed in a state approved container which is burnt with the body.  The state has approved coffins for this purpose.  The state has also approved a six-foot long cardboard box.  When Grandma passed, Mom couldn't understand the point of buying an expensive or highly decorative coffin just to burn it to ashes.  So, the cardboard box was selected.

Mom and I now joke about cardboard as a funerary choice.  I've promised to save a wardrobe box for her turn.  We both figure that if it was good enough for Grandma, it is good enough.  I know it is a grim subject to joke about, but I could save a collection of quality shoe boxes for her if she would prefer.