Christmas Party

All the residents were perky and had a great time!
Even mom was singing the whole time
Yay!

Hello! Hello?

Mom seemed,
Not sure how to describe it....
Overly compliant if you will.
Her hair was cut and eyebrows groomed.
An aid got her up and took her to the bathroom
and i didnt hear any fussing.

She just pretty much just sat there at the table
as I shared a video or two
 pretty non-reactive and nodded off a few times.
Because of the snow storm I was there on a different day
so there weren't any other visitors and lots of
aids i didnt recognize.
Another aid came and tried to get her to eat
but that was unsuccessful -
I asked the head nurse how she had been for the week
- got the same ole answer that she was fine.
But then another aid said mom had walked out of the
TV room with a planter proudly on her head
like a hat
so I was happy she was doing silly things.

It was a long and strange visit.

Mom's long hair

Apparently her hair is getting so long because she has
thrown a fit every time they try to get her to go to the hairdresser
downstairs.
She was polite yesterday but did NOT want to be touched and was
pretty nasty telling me so. So, I played music and videos which she
enjoyed and spent the time talking to the other visitors at the table.
Unfortunately, the evenings after i visit
I suffer from fatigue , chills and other anxiety symptoms
and then are plagued by repeating the negative scenarios over and over.
My dr's only suggestion is to up my meds but they have side effects
which are bad also. I mean, who wants to be doing abdominal crunches
and clenching teeth all night.

Watching Bird Videos

I won a tablet and have been bringing it for mom to watch
bird and kitten videos. It makes the time go by nicely for
us both . She and the other residents enjoy it when i play
her the Beachboys also.

Look how lovely her hair is, Nichole really takes such great care of her.
She was telling me she had to shower mom because she was
giving herself a poop-facial. Then mom had the runs in
the shower Nichole made a "barf" face. All I could think of was all
those kids out there who deal with that at home with a parent and I
wonder why they dont let the L.O. live in a home where the people are
trained and more importantly can Leave.

After Fighting with her aid

She lay on her bed to make the world go away....
I gave her an old friend to hold for a while and sat with her.

As far as the fighting goes
I truly love her aid that came back from giving birth..
she is SO patient, putting up with my mom who doesnt want
her undergarment changed.
She told me the night aid never changed her.

I noticed she has started to twitch...  "myoclonus "
She was twitching once in a while laying there.  Also
I saw it the most when she was holding her cup,
  her hand holding the cup shook intermittently.
I assume this is because communication is breaking down.
She ate all her lunch with lots of "Mmmmm!! "
wuv you mom

Narcolepsy and Alzheimer's Disease

One thing they do not tell you is how this disease makes it harder and
harder for the person to stay awake even if they want to.
Mom is in this stage where she nods off
even in the middle of chewing or drinking.
She was like that for a bit and then scarfed down her breakfast
that she had slept through and then lunch also!


Sleepy girl with some warm decaf and wet hair

Go Away !

After she told me that repeatedly and spat on me
I sat on the window seat and opened the blinds.
We sat there for over an hour and I talked to her sang and played music.
She was moving her feet like she wanted to
well......to just go.

this isnt her room










I finally enticed her to join me at a table outside the door with a glass of juice
followed by lunch.
I think by the end of two hours she had realized it was me
because she reacted when I snugged and kissed her goodbye.

yes, it sucks all over, painfully sucks.

Eating Talking and Busy, update on Dr.

Wow mom was really with it !
She was quite talkative and ate... get this -
Three Meals !!
She was finishing second breakfast when i got there...
I sat with her looking at coupons and she yacked away asking alot of
questions which I answered adequately ( whew! I have no idea what she is saying)
I got to chat with another visitor who included mom in the conversation.
It is great when people know how to communicate calmly with someone
who speaks gibberish and include them in the conversation.
An hour and a half later when i put her lunch plate in front of her she said
"I dont know if I can eat this"  Wow !
She then proceeded to eat practically the whole thing!

There was (Another!) new
head nurse there with a Jamaican accent who was really good with mom. Also,
mom's aid was new also but already knew mom intimately - I could tell
by the way she told me about mom's ways of doing things and communicating.
Mom was even back to using the word "bathroom" and going on her Own!
This disease truly is a roller coaster.

I was able to have a tiny conversation with the other visitor about what the Dr
had said to me.
She said that the dr had given the same speech to others.
I had thought more about what the dr had said and had begun to doubt most of it
by now. Especially after I found the same words in an article by the
Alzheimer's Association. So, it was a canned speech she gives out.
Blah. Plus she never called me back like she said she would.
So, like one does about Everything these days, you educate yourself
and prepare as best you can.

Meeting with Gerontologist, Mom Happy

Got mom a big book of flowers, she loves it!
I visited on tuesday this week because I had been scheduled to meet with
a geriatric doctor about mom's future.
I looked the doctor up before hand and this is her-
http://annekennymd.com/about/

She sat at the lunch table with mom and I which was a relief because I
was not looking forward to being in a tiny office alone with a stranger.
This way she could also observe mom in action.
Dr. Kenny asked me to think about what mom would want at the end of her life.
To think about whether or not to hospitalize ect.
I responded I am always telling them to not bring her to hospital when she falls
but last time the nurse insisted.
I asked her why I was told certain things by a nurse such as
having mom on "Palliative care" they wouldnt have to micromanage her intake
and report it to dr.
Dr Kenny told me the nurse wasnt explaining what happens correctly.
She explained that the state keeps an eye on these numbers and the home
is forced to comply with keeping them up. To the point of actually pushing
a person to eat or drink even when they dont want to. Or go to the hospital.
When a person is labeled Palliative this doesnt happen.
I told her I thought it would keep the home Accountable which she understood
but didnt feel they were like that here.
(I had witnessed them trying to encourage her to eat when she didnt
want to and it made mom aggravated and more resistant.)

We talked about when mom was so sleepy and wouldnt get out of bed or eat/drink.
I voiced my concern about them just letting her lay there thirsty and how I cranked up her
bed and took the time to get her going. How she was soon eating lunch and out of bed.
The Dr thinks that mom was like that as a side effect of the antibiotics for the UTI.
Mom's condition then was why the nurse had thought she had entered into the "last stage".
Dr. Kenny spoke to me about UTI's in people with dementia and it was an eye-opener.
She said that it is because the urine sits in the ureter, not necessarily because of cleanliness.
The connection between the brain and bladder isnt working right.
Also that the side effects of the antibiotics are worse than letting the body deal with it
on its own.
It was at this point she said the "M" word - the word which strikes fear in me deeply.
Morphine.
"Just a drop so that she can just rest and sleep through the pain,
 wouldnt you like to just sleep through the pain of a UTI ? "
I said I would prefer her get liquid acetominophen.
She responded about comfort and to think about all these things for the future.
The doctor kept pressing about what mom would want
and i know one thing.
She never took medication for anything. Not even shingles. She took
quinine and aspirin for that terrible pain.
Also, if you are asleep you arent going to be drinking the fluids necessary to flush
out infection.

Of course one day she will not be able to drink...

Other things mentioned for thought-
Not bothering to test for UTI
No more blood tests
Not treating pneumonia from inhalation
Cutting medication doses or eliminating them.
Allowing body to be natural, not prolonging the inevitable

Alzheimer's Widower

mom was dressed, clean and more alert today.
She was able to walk well and sat at the table for lunch.
I took a video of her using her finger to "write" on the table...
I could tell she was writing in cursive and after watching the video
many times I decided she was writing her name!
Her desire to read was strong so I got a book for her
Inside the book was an interesting piece of paper that wasnt supposed to
be seen.
It was feeding orders for another resident
It read that the family had ordered not to assist in feeding in ANY way.
No spoon feeding or help at all. and below the signatures of those working there.
Cripe. I do not think i could follow that at all!

I had a conversation with a gentleman who was there
feeding his wife. I had noticed he wasnt visiting as much the past few months.
He called himself an Alzheimer widower.... he had found a reason to live.
He told me her name and that they had met in church.
She was encouraging him to eat well and exercise, he quit the whiskey that
he had been drowning himself in.
He really has been looking better...
I gave him a shoulder massage, sigh... so difficult this disease is.

Life is so strange. There is no good or bad, there just is.

mom ate 100% of her lunch and two drinks -

video of her "writing"
https://youtu.be/pxQiNMhWzTE 

Two Phone calls

This morning i was called to say mom was not drinking and
was 3 days behind her fluid intake.
I told them to give her yogurt shake instead of juice.
I called now after lunch and was told she is current on her fluids
and ate all her breakfast and 25% of her lunch.

..... is there any wonder i am confused as to how mom is doing?

Two visits and now Palliative??

Last Sunday I found mom on the couch cold and in her nightgown.
The aid pulled on her arms and of course mom refused to get up that way.
I got a pair of pants and showed them to mom- she understood and I put them on
her legs and then leaned over and had her hug me and stand up.
While she hugged me i pulled on her pants.
The nurse took her to be toileted and i said I wanted her seated for lunch.
Next thing i turn around and mom is planted once again on the couch (ugh)
oh well, i got a rolling table and set lunch on it.
I was able to encourage mom to eat her entire meal
by mixing it with jello.

Yesterday I was told she was two days behind in her fluid intake and that I
should think about putting her on "Palliative care" - what?
She didnt like the juice so i got her yogurt shake and she drank 1 1/2 glasses of
it and five large spoonfuls of lunch. She tapped her toes to the Beach Boys
and looked at photos of flowers I had & identified "rose".
Then she stood up and walked to a room door,
pushed her rollator away and walked to a bed and lay down.
I put a blanket over her...

I am bewildered by the nurse saying to put her on palliative
"so they dont have to write down her fluid intake and call the doctor"
"she's in her nineties"
and something about "unless you want intravenous fluids"
I agreed to having someone call me for appointment.
 I really have a problem with this woman's manner of speaking.

In Bed

Yesterday I found mom fast asleep in bed
It was a shock for me to see her with head back, mouth open
looking so old and small.
I sat near her head and snugged her for a while and stroked her.
She would wake up and fall asleep repeatedly.
Her room mate came in and sat in the chair next to me and
patted my leg.... so all three of sat for a while.
After a very long time of massaging and talking to her I
got a yogurt drink they have and raised the bed up.
Got her periodically awake enough to drink... then awake a couple more seconds,
then I got some juice and aid got her lunch.
All that coaxing took over an hour!
Finally I had a bed table and her sitting up,
second spoonful i fed her she went to eat my hand she was so hungry!
Soon she was trying to eat and drink on her own, finished
lunch and 2 yogurt drinks and two juice.
Two and a half hours and I was spent and had the aid come in
to toilet her.
Exhausting.

She was really out of it at first

Room mate keeping company

 You can see the color come back and shes smiling

She's runnin around again

I brought her aid the two little blankets I made
she is such a tiny woman and her belly looks like a soccerball
just glued there- so cute.
I took a video and realized that maybe mom gets us confused
because her voice sounds like mine (?)
I found it funny because the aid ticked her off and then mom
looked at me and thought i was her- that happens all the time with them-
people move so fast in comparison to their brain.
You have to touch them gently if approaching from behind , and not walk
too far ahead because the attention focus is really close.

She ate her whole lunch and we walked around a bit,
then I got her to sit with me a bit on the couch and I left after she fell asleep.

Her nurse loves Dooney and Bourke so I looked for a coin purse at the Goodwill. Bingo!
Found one, and a tiny purse that still had the tag & plastic on handle for half price! The coin purse was 1.00! I had a 20% off coupon too WooHoo!

So Sad

I found my mom sitting asleep at a table with a plate of food infront of her.
It was 11am and half her breakfast ground ham was on the table.
So, she had been sitting there since 8:30am when her aid said she fed her
(and denied she had sat there all morning)
I cleaned up the mess and after massaging her legs and feet and rubbing her
back to wake her up, she walked over to a comfortable couch.
There, I could sit next to her better and put my head on her shoulder
and she could snug close. Her hands and feet were cold.

She fell asleep deeply
and my tears fell on her shoulder....

After an hour we made our way to a table for lunch-
she kept falling asleep and in between
I would feed her one bite.
She would refuse another bite, fall asleep, take a bite.
When I left the table to wash my hands I saw her feeding herself
so that was good.

Sleepy but Mobile

As soon as I entered the floor I recognized the back of mom's head.
She was dozing on a couch but I was told she had been running around earlier.
She would wake up and acknowledge my kisses and pets
and then doze off mumbling.
There was a weighted comforter there and I found that it acted like
a hug when I draped it over her arms.

One of the resident's husbands said I should
"put her in a chair and take her outside"
Maybe next week, for some reason I am afraid to be away from
help if i need it.

She got up easily from the couch with no achy back ,walked
well to the table for lunch, and ate her entire meal. Yay!

There were two new residents to replace the ones who had
passed away. Like a river they come and go...

WooHoo mom's 92

Delicate Petal

When I saw mom on March 31st she was sitting on the couch napping.
I sat next to her , snuggled and kissed her.
Her aid last time said she was sleeping more and this time
she was still sleepy. Her eyes are not red so it isnt from being up all night...
so i am afraid she is entering the next stage.
The sleepy stage. This is the next stage of the progression of
Alzheimer where they cannot keep their eyes open even to eat.
She read out loud from a book for a bit for me which was nice
as it turned into singing ( she cannot read and it was gibberish)
Then promptly fell asleep.
I managed to capture one photo....
in it she looks quite calm and delicate like a flower petal.

Like a rose in a vase you have to be so careful and enjoy it
because it is wilting before your eyes
before you are ready, before you have prepared, you care for it
and tend to it....
it still softens and weakens
and sighs .....

Today my beloved mom is 92

Room Decorations

I forgot to post this photo of what I did last week in mom's room.
I had to climb up on her dresser to put the stuff high enough
to keep it safely away from reach.

She has been great for the past few visits but
this time she was a tad ... Not sure how to describe it....
people said she had been "feisty" all week-
but I found her anxious. Her aid said mom kicked her in the leg...
She wouldnt settle down, yelling at each person to get moving
someone is coming etc.
Closing herself in rooms and pulling the
curtains across, hiding. Her legs swollen from walking too much.
She wasnt acting frightened but very concerned for people to
Get Moving! Come On! The other poor residents and visitors sheesh!
Finally she ate a little lasagna and I gave her icecream which she mixed
with her greenbeans .
Needless to say,  it was an exhausting two hours.

Great Visit

First thing I did was look for Jane's husband. I was so afraid he
would be in bed sick.... But NO !!!
He was wide-eyed alert and well ! YAY !

Mom was full of things to say and was actually focused to the real
world enough to react logically
For example she would say "no what are you doing?...
Ohhh, OK ! "
Instead of just resisting and being angry

She told me "You are Looking more like me"
Hahaha, Ugh !

At our table
a son Tim my age was sitting feeding his mom, and there
was another resident who turned out to have verrry long arms.
It was hysterical to tell Tim
"Uh, she's got your phone"
"uh, she has your water"
He would exclaim "wow you have long arms!"
and next thing you know, after he had moved everything away-
There she would be playing with something else of his LoL
Even mom scootched her plate and drink away from her
hahaha