Friday, May 29, 2015

Of Hooks and Eyes

Bras are now a challenge for Lyn.  She's no longer able to hook the bra herself when she gets dressed each morning.  She comes out of her room and asks Mom for help getting dressed now.

If I remember correctly, Lyn's preferred method of putting on her bra is to put it on and then reach around to hook the clasp.  This is the front loading method.  She doesn't hook in front and then twist the bra around into the proper position.  So, the issue is not one of vision.  She's never had to look at the hooks and eyes to get her bra latched (mostly) properly.  She does it by feel.  How?  It has always remained a mystery to me.

If you think about it, putting on a bra, now matter how you do it, is a complicated, multi-step process.    Lining up your hands and getting those little hooks into their eyes is tough.  Perhaps it is time to consider switching her to a pull on bra.  She can still pull a shirt over her head and a pull on bra would let her use those same skills for her underpinnings as well.

Thursday, May 28, 2015

Assisting Death

Mom mentioned to me that she had raised a question with her priest recently.  She inquired on the Catholic Church's stance regarding terminal diseases and feeding tubes.  If Lyn progresses to a point where she is unable to swallow, what guidance does the Church provide.  Can Mom refuse treatment on Lyn's behalf?  It is my understanding that the Church advocates in such cases that a feeding tube be provided to the individual.  To do otherwise would be to allow the person to starve to death.  Starvation is a very painful death.  The Church does not advocate taking any action which would hasten a person's death on the belief that it would be murder.  Instead, the Church advocates providing palliative care and allowing the body to cease functioning in its own time.  (I hope I have that correct.  It may be much more nuanced than my summary.)

The topic, when Mom raised it with me, was a little surprising but not shocking.  I am familiar with Mom's stances and respect that she's investigating scenarios she may possibly face in the future.  I firmly believe it is better for us to discuss, weigh our options and know what choices we're comfortable with before we're in a moment of high emotions or crisis.  We like to plan ahead.

With this topic in the back of my mind, I was struck by one of yesterday's articles in The Atlantic called "Doctors' Secret Language for Assisted Suicide."  It is an interesting article and while it doesn't address Alzheimer's, it does raise the notion that in most states here in the US, the topic of imminent death is still often discussed in whispers, particularly if the person in question is not elderly.  I believe there is only a small handful of states in which assisted suicide is legal and even in those, I would find it hard to believe that they would allow for assisted suicide of an individual with Alzheimer's.

Here's the catch; while the Alzheimer's Association and other advocacy groups will refer to Alzheimer's as a terminal disease, it may not really be recognized as such universally because it can go on for so long before a person passes.  Think about the fact that Alzheimer's is not widely listed yet as the cause of death on death certificates.  Additionally, with assisted suicide, the individual who is ill must be of sound mind to legally choose that option.  Some states even require that two doctors evaluate the individual and rule the person is of sound mind.  Those limitations do not stop individuals who make the choice to end their lives before the disease takes that option from them.

We are not faced with those options with Lyn.  She does not want to die.  She has not asked if she can be helped to die.  I'm not sure she's ever been capable of suicidal thoughts.  We will be there to support her body for as long as it can function.  We will not take action to extend her life.  We will not ask for more time with her.  We also will take no action to hasten her death.  Her death will come when her body is no longer able to function.  If she dies in her sleep tomorrow, so be it.  If she lives another 5 years, we'll still do our best to support her body without taking extraordinary measures to keep her alive.

I hope that makes sense.

Additional Information
Fact Sheet: Suicide and Assisted Suicide - Alzheimer's Association

Wednesday, May 27, 2015


When I spoke with Lyn this weekend, she was indignant.  Her ire was up and she was going to let me know about it.

"Do you know what I don't like?" she asked.

"No.  What don't you like?" I asked.

"I don't like ketchup any more!"

"Why don't you like ketchup anymore?" I ask with surprise.  Ketchup was long a favorite condiment though I've noticed it has been replaced by ranch dressing over the past few years.

"I don't like ketchup.  It tastes like tomato sauce!!"  She likes tomato sauce on pasta.  Apparently, it is no longer acceptable for anything else.

Tuesday, May 26, 2015


I received an email a little over a week ago from an individual who had chanced upon Dementia Be Damned and found that the post on Lyn's inability to play solitaire struck a chord.  The email raised several red flags for me.  Fortunately, the individual included their phone number and we were able to arrange time for a conversation.  After speaking with the individual, I remain concerned and have followed up with an email with links to the SAGE tests and domestic violence resources.

Here's the thing:  A caregiver's safety is not trumped by the needs of a person who needs care.  If the person who needs care is violent or abusive, the caregiver has a right to be safe.  Period.  Full stop.

It doesn't matter if the person who needs care is violent because of Alzheimer's, mental illness or sheer ugliness and a history of being abused themselves.  It doesn't matter if the person who needs care is dealing with a terminal disease or a chronic condition.  The caregiver needs to be safe.  The caregiver needs to know that they have safety in their own home and that there is safety for everyone else living in the home.  If the caregiver is a family member and not a paid professional, the safety in their own home is complicated by the fact that it most likely means the person who needs care lives with there too.

So, what can be done?  If the person becomes violent or abusive, if the person won't let you leave, you may have to call the police.  You may have to ask friends and family to help you get your stuff and get you out.  You may need to call upon the resources provided by domestic violence shelters.

No matter what, your safety is more important than caring for someone who is abusive even if they're abusive as a result of a disease and it is out of their control.

I sincerely hope the person's situation receives the care that is needed and that it changes quickly and positively.  I remain open to future contact and updates even if it is determined that the person needing care doesn't have Alzheimer's.

Friday, May 22, 2015


How long ago was it that Lyn hated leftovers?  Not that long ago; just a year or two.  There was a period of time where she figured leftovers weren't leftovers if you put them in her lunch containers right away.  If you transferred food from the fridge into her lunch containers, then the food was leftovers and she wouldn't eat them.  Now, she's totally fine with leftovers for lunch and doesn't want non-leftovers.

Mom writes:

I packed her lunch this morning with her standing 2 feet away, supervising.  Nothng was said.

On the way to day-hab I hear, "Did you give me leftovers?  You know that's the only thing I like."

"Yes, I did."  Silence for about 10 minutes then "I know you put banana bread in my lunch."

"Yes, a small slice."  

"Well, when we get to day-hab can you open my lunch box and, and, and........?"

 "You can open it now.  So, you don't want the banana bread?"

 "Well, I still like it but don't want to eat it."  She opened it and took the slice out and gave to me.

I said "you don't have to eat something you don't like."

"I like it but just don't want to eat it."

Monday, May 18, 2015

How Deeply Do You Sleep

Lyn's nighttime hallucinations are increasing in frequency.

Lyn is in bed most nights by about 5pm and she'll sleep for about 15.  It is not unusual for her to get up once in the night to use the restroom.  When she's up, she often hears noises right outside her window, sometimes accusing the neighborhood children of playing there.  She may describe the roof shaking.  When she reports this to Mom, she'll describe that she was afraid of the shaking and the noises.

Mom will ask where Nikka is when the commotion is going on and Lyn confirms the dog is asleep in her bed.  Lyn knows because she occasionally comes down the hall to check.  Mom will remind her that Nikka will wake up and bark if something is going on.  She also reminds Lyn that she can come into Mom's room to tell Mom if she's scared or if something is happening.

This leaves Mom with a quandary.  How deeply should she let herself sleep?

For the past two weeks, she's been fighting an upper respiratory infection and Strep.  When she sleeps, her body has been demanding that she sleep deeply as it works to recover.  Mom has a monitor in Lyn's room which she can turn on so she can hear Lyn through the night.  During her illness, Mom's deliberately and understandably left it off.

Mom and I have been in discussion about adding some alarms to the doors.  They've never needed alarms for security sake before and the only reason to add them is so that if Lyn were to decide to wander outside the house, Mom would be alerted as soon as the door opened.  Perhaps we'll help install them for when we visit this summer.

We've not yet tried the black area rug trick on Lyn.  Because Alzheimer's patients cannot process what they're seeing or hearing well, you can often dissuade them from trying to leave by having a black run in front of a door.  They perceive it as a hole and don't step over or on it.

We anticipate that both of these measures are about to be needed.  Nikki will bark if someone comes in.  She won't alert Mom if Lyn tries to go out.

Friday, May 15, 2015

Mashed Potatoes Two Ways

Mom loves mashed potatoes.  Lyn hates them.

Mom mashes her potatoes with butter and sour cream.  Lyn does not like her potatoes like that.  However, she does like peeled, boiled potatoes.  So, when Mom makes mashed potatoes, she scoops out some of the potatoes for my sister's plate before she mixes and mashes for herself.  Once the plain potatoes are on Lyn's plate, she likes it if Mom mashes them with her fork.  She will ask Mom to add in some butter and sour cream because that's the way she likes her potatoes, "plain with butter and sour cream."

I'm sorry my sister doesn't like mashed potatoes.

Thursday, May 14, 2015

Trundling Merrily Along

When I first started writing Dementia Be Damned, I went through a period of time where I kept tabs on the blog's stats.  How many times was a page read, from how many countries did people visit, was their a pattern to the highly viewed posts and the those that are not widely read.  It was exciting when the blog was mentioned on MetaFilter and there was a short-lived but huge spike in readers.  Now, I write and post and work and just try to keep my head above water.

I've let go of feeling like I had to post every day and we've gone from 7 posts a week to four on average.  It felt good to get there and to give myself permission to not post if I didn't have something to say.  After all, there are days when I come home from work and my brain is too tired to think of what to fix for dinner.  (I try to decide that in the morning before I leave the house so I don't have to think when I get home.)

The readership counts have gone down but so has the bots which were artificially increasing the stats.    It looks like we've got about 35 regular readers.  For that, I thank you.  DBD was started as a way to share information with my Mom and as a way to chronicle my sister's life.  Along the way, I've learned that she was inherently at higher risk of early on-set Alzheimer's than the rest of the general population because of her intellectual disability.  That lovely fact is not limited to those individuals with Downs Syndrome.  I've also learned that the progression of her disease is pretty classic.

DBD has been a gift to me and that was unexpected.  I love when someone reaches out to me to ask how my sister is doing or how my Mom is doing.  I love that you're reading along.  Perhaps it is because you and I are connected on FaceBook and my links there have peaked your interest.  Perhaps you found DBD when you were doing some research on coconut oil and its impact on Alzheimers.  (It has none.)  Perhaps you laughed when you saw the picture of my sister in the pink floral hat I gave her one Christmas which she sent back to me.  It doesn't matter what caused you to read DBD.  What matters is that when you ask about my family, I see your interest and your care.  Thank you for that.  It is a gift to be able to laugh with someone else over my sister's statements like "It is time for you to be happy to fix me dinner."

DBD has become such a part of my life that it is just part of my routine now.  We're just merrily trundling along.  It is with surprise that I opened the blog to write a post for today and realized yesterday's post was 1,000th post.  Crazy.

Happy 1,001!

Wednesday, May 13, 2015

Best Buddies

They really are best buddies.

They had played until they were both tired.  Mom says they stayed like this for some time afterwards, content to be with each other.  I know many people are opposed to pit bulls and pit mixes.  However, we've long loved the breed and this dog has been an amazing gift to keep Lyn engaged.

She's the best dog that Lyn could have.

Tuesday, May 12, 2015

Daily Announcements

Announcements from last Friday:

2:00     Sometimes my brain doesn't work, it jumps from one side to the other.

2:20     I'm going to get a bath. I feel sticky.

3:30     It's time for you to be happy to fix dinner.

4:00     Nikka's happy because I'm home.

4:15     While eating, I don't want to watch Maury cuz I don't like all the yelling and short dresses.

5:00     I'm going to bed so I can get some good sleep.

5:15     Sound asleep

Personally, I would love it too if someone was always happy to fix me dinner.  She had been asking for Mom to cook for the past several months by asking "Would you be happy to make dinner now?"  It has not become a statement and not a request.

Monday, May 11, 2015

Brain Connections

Lyn has a new way of explaining her disease and how her brain works.  Last week, she explained her brain to the staff at day hab in a very concise way.  She stated:

"Half of my brain is connected and the other half isn't.  So, I can't do everything like I used to."

The staff had asked if she understood what they had just said to her.  She didn't and this was her explanation.  I think it is right on target.  It is also a good reminder that individuals with Alzheimer's are often aware of their disease and its progressive changes.

Thursday, May 7, 2015

Being Brave

Mom writes:

"We had a hint of a rain storm go by a little while ago.  The sidewalks are almost wet and I love that smell.  Some wind, a breeze.  BUT there was some thunder.  Need I say it was amusing to watch these two?

Nikka began to shake before the thunder.  Lyn was very brave, telling the dog "It's ok.  I'll protect you."  She then got on the floor with her arm around Nikka.  I couldn't tell who was the most nervous.

I asked Lyn if she was anxious and she said "just a little because Nikka's nervous.  I can't explain it.  Can I go take a bath?" I told her to wait until it was gone so she could help keep Nikka calm.  I knew that if I said we don't take a bath/shower when there thunder or lightening she would have been frightened.

She's now running water."

Wednesday, May 6, 2015

Empathy Cards

Artist, Emily McDowell has come up with a brilliant idea in her line of Empathy Cards!  A colleague shared the post announcing them with me on Monday and I fell in love with the cards and the messages they convey.  While the cards were inspired by the artist's own experience with cancer, they are written in such a way that they can apply to many serious illnesses.

Ever wonder why Alzheimer's is often referred to as a journey when the destination is death?  Yeah.  Me too.  (I know I've been guilty of using it myself.)  This card fits.

Did Alzheimer's happen for a reason?  What reason is that?

Since when did coconut oil cure any form of dementia?  No, eating more cholesterol will not feed the brain and reverse Alzheimer's.  There's a card for that too.

Have you reached out to a care giver today?  Have you let a connection to someone slip a bit because of your lack of words to address their situation?  Don't let that keep you from sending love and support any longer.

I love the feel of the artwork and the honesty of the words.  I like that they're able to cover so many serious situations for which we may lack our own words.

So, if you find yourself wanting to share a bit of empathy and wanting to support someone in a simple and meaningful way, consider these as an option.

Tuesday, May 5, 2015

Sharing Recipes

I love cooking.  When I was newly married, my ability to cook was questionable at best.  There have been some epic failures along the way but somewhere along the line, I acquired a few skills and am not half bad.    I am, by no means, a skilled chef but I don't risk poisoning my family either.  Lyn knows I cook and that I'm always open to new suggestions.  In this week's Skype call, she graciously shared with me her new favorite recipe.

I was telling her about a comment my sister-in-law shared about her eldest child's love of tortillas and cheese but dislike of quesadillas.  The word "tortilla" prompted my sister to ask if I knew that she liked to eat tortillas with her dinner sometimes.  Being from New Mexico, I think it is pretty much a requirement to always have tortillas (or the ability to make tortillas) on hand.  We might run out of bread but we won't run out of tortillas.  I think there's a law requiring that somewhere.  Thus, Lyn's declaration that she likes to eat a tortilla with dinner is nothing new and I supported her proclamation with a "Of course!  Tortillas are always good."  That's when she stopped me to explain I didn't know how she likes her tortillas with dinner.

"You warm up the tortilla," she started.
"About 15 seconds in the microwave," interjected Mom.
"Then you put butter all over it." She continued.  (I'm still with her at this point.)
"Then you put cinnamon on it." She beamed with delight. "Fold it in half so it isn't messy.  That's how I like it!  It's good!"  And there she lost me.  There's no sugar; just plain cinnamon added to the butter.

I looked to Mom for confirmation.  Turns out that Lyn was quite specific in her instructions to Mom earlier this week when she asked for a tortilla with dinner.  She inhaled it and asked for a second.  Mom reports that she's eaten them about 3 times this week.  It is not a dessert.  She's eating it as she's eating the rest of her meal.

If it makes her happy, then I'm happy for her even if I won't put plain cinnamon on my flour tortilla.

Monday, May 4, 2015

Star Wars Day

Today is May 4th and that makes it Star Wars Day.  If you're into Star Wars, then "May the Force be with you."

While I was in New Orleans last month at my conference, I received an email from Mom telling me that Lyn had decided on what she wants for her Christmas present.  She wants a Star Wars poster.  Specifically, she wants the classic image of Luke and Leia in front of Darth Vader's helmet.  I was definitely surprised.  I have no idea what has prompted her to ask for this poster.  Fortunately, I'm sure we can get her a replica.

Friday, May 1, 2015

Can You Do That

The conversations are becoming amusing between Mom and Lyn.

She went to bed about 6:45 and wanted Mom to tuck her in.  The evenings are warm.  With Lyn's door closed and condenser running it's warmer for her. She came down the hall after being in bed for about an hour and half.

Lyn: Do I have to sleep with covers on?
Mom: Not at all.  You need to be comfortable.
L:  I don't know what to do then.
M: Do you want the ceiling fan on?
L: Can you do that?

Mom went to her room and  pulled everything to the foot of the bed.  When Mom had tucked her in earlier all she pulled up was the sheet.  Lyn had pulled the spread and fleece up after Mom left her room.  Mom turned the fan on and pulled everything to the foot of her bed.  Mom told her that even when she's asleep, if she gets cool or a little bit cold, she could pull them up.

I wish I could have seen the look of surprise on her face.