Friday, May 31, 2013

Figured It Out

Lyn's figured it out and Mom's in trouble.

Lyn wanted Mom to fix hamburger macaroni for supper.  It is essentially the same as spaghetti except you use elbow noodles instead of spaghetti noodles.  No, not hamburger helper.  That boxed stuff is gross.

Mom made more than was necessary for dinner because she was planning to send some with Lyn to day hab.  When they were done eating, Mom asked Lyn if she wanted to put some in her container for lunch.  The Look was flashed across the room.  Lyn responded "NO!  I figured it out.  You want me to have left-overs for lunch.  You know I don't like left-overs so just fix me a sandwich."

It worked for a while and Lyn hadn't realized she was having left-overs for lunch for about a year.  She's right, though.  Mom was sending left-overs and Lyn's not having it any longer.

Back to sandwiches it is, then.

Thursday, May 30, 2013

Emotional Contagion

I've mentioned before that Lyn is susceptible to suggestions.  For example, when she was being interviewed at the University last summer, she was asked if she got sad sometimes and she burst into tears as if on cue.  We were floored and just chalked it up to Lyn being Lyn.

A post over at Only Human, a National Geographic Phenomena blog yesterday really shed some light on that behavior for me.  I encourage you to read it.  The post is titled "With Alzheimer's Comes Empathy" and the author, Virginia Hughes, does a great job of explaining the findings of a study in easy to understand terms.

I hope you find it as enlightening as I did.

Wednesday, May 29, 2013

She Disapproves

Lyn has taken to disapproving of any purchase that Mom makes unless it is food or something for Lyn. It has become quite comical, really.

When Mom purchased a water fountain for her patio a month or two back, Lyn told her emphatically "You didn't need it."  For several days, Lyn would grumble and mumble and scowl each time she saw it.

Yesterday, Mom picked up a set of wind chimes while she was out running errands.  Lyn heard them about 5 minutes after arriving home.  She didn't say anything at first but started to stew.  After about 20 minutes, she was ready to chastise Mom.  "I hear wind chimes."  Mom said "Really?  I don't see any."  Lyn countered with "You always buy something you don't need."  She got up and looked out the window where the sound was originating.

She was angry by the time she returned to the rocking chair muttering to herself about how "you always buy things you don't need."  Mom reminded Lyn that Lyn's money is not used in the purchase and perhaps Mom did need them.  Lyn decided that wasn't good enough and stayed mad for over an hour.

Mom had a hard time not laughing during that hour.  When you cannot reason with the dementia, it is better to be amused by it.

Tuesday, May 28, 2013

Visits

This weekend Lyn and Mom were able to host two meals at their house and both were enjoyable and successful.

On Sunday, two ladies from their church came over for lunch.  On Monday, our Uncle and his family came over for brunch.  At both events, Lyn was relaxed and happy.  Each visit lasted about 3 hours and Lyn was engaged and helpful.  She did not end in tear either day.

So what made the difference between these two visits and previous ones?  Maybe her disease has progressed such that she won't react in tears?  Unlikely.  I think the difference was that both visits were so early in the day.  The earlier time meant she had more energy both physically and emotionally to deal with people in the house.

She needs constant observation and environmental adjustments in order to continue feeling secure and happy.  Perhaps this earlier approach to hosting visitors is just one of those adjustments.  If that's the price to be paid in order for her to remain content during a visit, then it is a small on and well worth it.

Monday, May 27, 2013

Detour

Yesterday, When I spoke with Lyn on the phone she suggested an activity for why my family and I visit this summer.  She suggested that we should take a ride on one of the trollies that drive around Old Town.  She promised they would give us a detour of the area so we can see the area.

While we've not been on this detour, we've seen Old Town many, many times.  It is the thought that matters.

Friday, May 24, 2013

Standing Up for Herself

Lyn stood up for herself yesterday.  It doesn't happen often and so it is notable when it does.

One of the other clients at day hab has been making unkind comments to her.  She's been upset by the other client and come home agitated as a result each day this week.  Mom consoled her each time and urged her to speak with the staff when it happened.  Yesterday she did.

The other client made some ugly remarks about her appearance.  She burst into tears and went to the staff.  They calmed her down and sent the other client home as a result.  While one of the staff took her out for a little one-on-one time, another member contacted Mom to let her know of the incident.

Last night, Lyn came home happy.

Thursday, May 23, 2013

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.

Wednesday, May 22, 2013

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.

Tuesday, May 21, 2013

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...

Monday, May 20, 2013

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.

Friday, May 17, 2013

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.

Thursday, May 16, 2013

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.

Wednesday, May 15, 2013

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.

 


Tuesday, May 14, 2013

Funerals are for the Living

I had to be reminded today that funerals are for the living even though they are about the deceased.  I needed that reminder because I was feeling bitter and judgey, if you will allow me to use the word, about the realization that when Lyn passes there will assuredly be individuals attending her funeral who have not seen her in years.

Now, I recognize that these are my emotions and not necessarily a guarantee on a future event.  However, I need to acknowledge them and work through them.  For example, how would I feel if our father who has not seen her since 1978 showed up?  That one is a small chance, I admit, but I needed to examine it.

So, I wondered, what if he did show up?  What if other relatives who have not seen her in years showed up?  (That could change.  There's still time.)  Would they be there to grieve her death?  To support us as we grieve?  To just observe?

Would it matter?  

That's where I was able to stop myself.  Would it matter?

It wouldn't.  Lyn wouldn't be there to be flattered or offended by their attendance.  The funeral won't be for her, afterall.

I thought about the few funerals I've attended and a number that I have chosen to skip and remembered the reasons behind each decision.  I have gone to show support for a grieving friend even though I didn't know the deceased.  I have gone to show respect for a colleague knowing that our place of employment would be insufficiently represented.  I have chosen to not attend because even as a colleague, I felt I would be intruding in a family situation because the funeral was intended to be private.  I have chosen to not attend because the funeral was to be so large and public that my participation would not be noted one way or the other and I did not know the individual well enough to feel impacted by the person's death.

If I had so many reasons, then surely there are just as many or more behind the decisions that people will make when Lyn's funeral is held.

I decided to set aside the feelings of bitterness and the desire to judge.  Funerals are hard enough.  If someone, even our father, decides to attend, then I owe my sister the respect of being a gracious hostess, of holding my peace and standing firm for Mom and my children.

I'm writing this down to remind myself of this when the time comes.  I am, afterall, human and may need a reminder.

Monday, May 13, 2013

Mother's Day 2013

Mom took the day off and they did not leave the house.

I took the day off and did no work other than this post.  Seriously.

We hope you all had a wonderful day celebrating the Moms in your lives no matter how they came to be Mom to you.

Friday, May 10, 2013

Celebrating Every Score

Every bowling score Lyn earns is celebrated.  It doesn't matter if it is a 95 or a 142.  Her average since we started charting her scores in August 2011 is 110 for her first game and 111 for her second.  So far for 2013, her average is 109 for her first game and 114 for her second.


When she gets home, Mom always exclaims her pride over Lyn's bowling scores.  If Lyn's unhappy with a low score, Mom tells her that it is a good score.  In the meantime, Nikka is sprinting around the house, spinning and trying to get Lyn's attention in her excitement that Lyn's home.  Fortunately, Nikka's a great distraction when the scores are low.  Lyn will sit down and the dog will try to climb in her lap.  By the time they've lavished each other with love, Lyn has moved on to other topics.

I know Lyn didn't want to get a dog when Mom said it was time to adopt.  However, Nikka is one of the best parts of Lyn's day.

Thursday, May 9, 2013

Contemplating the Need for Meds

Mom writes:

The past 2.5 weeks has been a real trial.  Her mood has been argumentative and hateful at times.  It seems that regardless of what I said or did, in her eyes, I was wrong.  I know it's the disease that caused this change but it didn't make it easier.  I have to admit I surprised myself at how I reacted each time.  I would thank her for pointing something out.  I would reply that I didn't realize whatever the problem was.  The entire time I would try to take a deep breath and change the subject because often redirection will help.  LOL, but not always.

A perfect example of what I'm talking about happened Monday morning.  She was working with her speech therapist, trying to tell her about the weekend.  A lady I went to high school with was in town and came here to dinner.  I decided to fix spaghetti for dinner.  I thought it'd be "safe" since it's one of Lyn's favorite meals, easy to fix and something I've done thousands of times since living in Italy.  It smelled wonderful and I thought tasted as it should.  Well, Monday I was told "not to put that stuff in it again."  The tone of voice was hateful.  I asked if she meant the bay leaf.  "No, that other stuff."  I began to name the "stuff" in the sauce.  When I said "tomato paste" the reaction was one for the books.  "Yes, that.  Never use it again because it tasted terrible."  Poor speech therapist looked shocked.  I told Lyn that I didn't have any more paste in the pantry so she could relax and change her tone of voice.

I know the time will come, perhaps sooner than later, that we will have to use medication to curb this behavior.  As the brain dies, she will not be able to filter negative behavior.  I do not think this is the time to put her on the meds but it is time to discuss it with her medical provider.  I happen to have an appointment next week for myself and I'll ask her about it.  When, not if, the arguments get to the point of being all day, every day, she will go on medication.
  
Drugs are good, either for her or me.

Wednesday, May 8, 2013

Changing Tastes

A couple times since Lyn's diagnosis, her food tastes have changed.  She doesn't realize it is happening and doesn't recognize that her tastes are changing.  From Lyn's perspective, she's simply offered food that she does not like.  From her perspective, she's never liked it because she cannot remember or conceive of having liked it.

Some time ago, she decided she didn't like mashed potatoes.  However, she was happy to accept boiled potatoes that you squish onto her plate and top with a pat of butter and sour cream.  So, Mom makes Lyn deconstructed mashed potatoes sometimes.  Next, Lyn declared that she never liked chicken.  This week, she expressed a strong dislike for having tomato paste in her spaghetti sauce.  I'm not yet sure if this means she no longer wants any tomato based sauce on her pasta.

For years, we've commented on how limited her diet is becoming.  We should anticipate that happening more.  Her brain is changing and that impacts not just her ability to remember or her behavior.  It also impacts how all of her body functions, including how she perceives and responds to stimuli, including food.  It turns out this is pretty common.

There is no way to anticipate how her food preferences will continue to change.  She may end up only content to eat from a small handful of selections.  That's ok.   Getting her to eat will be the more important task than providing her with widely varied diet.

Additional Information:
How Dementia Tampers with Taste Buds
Eating Well for People with Dementia - a guide for carers (PDF)
Alzheimer's Society - Food for Thought
Alzheimer's Society - Eating and Drinking

Tuesday, May 7, 2013

A Single Story

I came across a TEDTalks video yesterday titled "The Danger of a Single Story" by Chimamanda Adichie.  It has nothing to do with Alzheimer's Disease or any other form of dementia.  It, however, talks about the how our perception of people and places is dramatically impacted by the stories we carry with us and how limited we are if we have only one story.  Ms. Adichie's presentation resonated with me. 

I have linked it below for you.




There are a number of bloggers who write about their experiences with dementia either as an observer, a care giver or even as the individual who has the dementia.   Those are two that I follow.  However, if you search for "dementia blog" in the search engine of your choice, you will find many more.  Each story is a new story to expand our understanding of what is involved in dementia in its many forms.

Monday, May 6, 2013

The Flexibility of Others

Socializing when you are the care giver for an individual with dementia is a challenge because of the limitations that arise from the person's care and need for structure.  For example, if you wanted to go out to dinner with Mom and Lyn, you'd have to be willing to go early enough in the afternoon that Lyn's Sundowning symptoms were not in play.  You'd also have to be willing to leave the restaurant as soon as the bill was paid.  There is no capacity for lingering over coffee and desserts even if you wanted to stay past the entree.  Socializing when dementia is involved takes the flexibility of others to make successful.

Fortunately, there are times when that flexibility comes from unexpected times or at unexpected sources. It is appreciated more than is often realized.  My best friend from my school days, my soul sister recently reached out to Mom to offer her a night out or in, her choice.  She's done this before but the timing of this is unexpected but directly in response to Lyn's increased agitation of the past few weeks.  It is unexpected because she's in the midst of finishing up her Ph.D. and planning her wedding.

The unexpected source of flexibility came from a friend of Mom's who was breezing through town over the weekend.  They've not seen each other since high school.  Here is an individual who knows little about the care my sister has required for the past 4 decades and yet, she was willing to come to their home to dine with them tonight.  It may not seem like a big concession to come to someone's house specifically to keep a schedule as undisturbed as possible instead of meeting them out on the town; but it is.

To Mom, these moments are treasured gifts.

Friday, May 3, 2013

Using Binoculars

When Mom and Lyn took their friend from Texas to the Bosque earlier this year, Mom took along the binoculars which once belonged to her father.  This allowed them to spot wildlife which was a distance from the paths or viewing platforms.


Lyn usually doesn't use them, but she did this visit.  She had an audience, after-all.  I've watched her use them before and I've often been unsure if she really was able to spot whatever we were trying to highlight for her.  Sometimes, she is able spot something.  When she does, she gets pretty excited.

It has never mattered one way or the other.  If she hasn't spotted what we say we see, she doesn't make a big issue about it.  I think it is another "Oh well" in her mind.

Note the double hoods in the picture.  She layered on a couple of hoodies to keep warm.  Chances are strong that she also had two shirts on as well.  She hates being cold.  You would think she lived in a colder climate than she does if you looked at her weekly laundry pile.

Thursday, May 2, 2013

Mom's Mantra

Mom has a new mantra.  "I know it's the disease.  I know it's the disease.  I know it's the disease."

She says it to distract herself from being short with Lyn because Lyn has become argumentative over everything and seeks to correct Mom many times each day.  For example, the news showed footage of a new theater being built.  Mom commented that it was a theater before the reporter began the story.  Lyn countered that it was a new casino.  When the reporter stated it was a theater, Lyn's reasction was "Harrumph.  I'm going to take a bath."   This has been going on for about two weeks and I've seen it during our Skype conversations.

Unfortunately, this is a fairly common behavior resulting from Alzheimer's.  Most care giving advice says to not argue with her, to just play along, to live in her universe because she really doesn't live in ours much anymore.

It is frustrating and tiring for all involved, including Lyn.  For Mom, it is tiring because she is constantly being told she's wrong and treated as though she's an idiot.  For Lyn, it is tiring because she seems to feel that she has to always be right and be on guard for whatever is requires correction.

This behavior really isn't Lyn.  It is the disease.

Wednesday, May 1, 2013

Playing Along




For some reason, Lyn always has loved getting her picture taken when there's a face cut-out involved.