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.