Written By People WITH Alzheimers Disease

http://thecaregiversvoice.com/voices-with-dementia/

Aggression Getting Worse

I brought mom two sets of pajamas this morning.
The women at the desk were like "oooh mom's fiiiiine"
But the aid came to tell me while i was in mom's room
that mom has been really aggressive .
Mom was messing around with her poop in the toilet
and screamed at the aid, pinched her when she tried to stop her
and clean her up.
she has been slapping and angry lately.
I could tell she had been difficult because I found her
lamp with the cord all wound up and in the drawer.
She has been packing.
She hasnt done that for a year.
not sure whether it is the progression of the disease or
a cold.
Her throat sounded a little hoarse but i dont know if
that was from screaming...

i dont know how i dealt with the craziness 24x7 for so long.
 i am very thankful i dont have to deal with this.
as i flew home i just wanted a strong drink-
glad its too early for that .

Santa Came

I went to the Holiday Party where mom lives.
They had men painted up like toy soldiers strolling and singing.
Carolers dressed in old fashioned clothing strolling and singing.
Mom was in a poor mood when I arrived
so I sat next to her in a room and watched the traffic drive by.
When she had cooled down (literally, she was hot)
we walked out to a table and someone brought us some food.
Most of it was too weird so we ate cheese and crackers and grapes.
I had the opportunity to ask a lady who cared for mom at night
what she needed and was told pajamas- just what the daytime people
told me not to get-- So pajamas it is!
After that I found mom in a room and spent the next forever
feeling time in the bathroom with her... ugh
a double flusher .... sigh, holiday party in the bathroom wiping
your mom .
Anyways,
they had curled her hair and she looked SO cute and pretty!
Soon Santa came for a photo and then mom said it was
time for me to go home- it was getting dark.

curls!

Santa!

Med D, DSS error, stuff

I finally made the call last month after fearfully avoiding it for mom.
I could not find anyone to help me choose, being told
"Oh, just go on the internet and get one!"
ya right.

What I ended up doing is calling the same company she had
and switching to the super saver program that has zero premium
if you are receiving extra help.

my whole goal is to get this all settled, then have her pension
go to the home directly. Then I wont have to worry about
mailing the home a payment anymore.
I also want the finance director to look back at an over-billed
over-payment that happened a few months ago.

Thank goodness she gets a copy of the DSS letters that I do-
I received two that said something alarming like a
discontinuance of coverage - what?
I called her and she had taken care of it
It was an ERROR !!!
Cripe

I am also trying to get my lawyer to call me back so I can get the
checks mailed from dad's trust since it has been six months.
Because of this, I need to figure out how much a cremation burial
costs for mom, so that I can take that amount off the top.

Traumatic

This is how my brother described his visit
to see mother.

Of course it wouldn't have been if I had been there.
But why should I be the one to hold their hand
when no family did mine.



.
Only one person held my hand.

wonder how it went

I still havent spoken to my brother about his visit.
I realized I was so out of it I forgot to tell him the door
combinations for the nursing home .
I wonder if he even came or if he chickened out...
It might have been traumatic for him to see her and be around
the mighty confused residents there.
i know it could be for some, I have been unnerved by some
of the anger some display..
 But the visitors are always a happy bunch.
There are a few wives that come to feed their husbands
EVERY day!

hm.. maybe i will email brother and ask ...
if he did, he is the only child to visit in years
besides me. (this has nothing to do with her illness)

Brother and Med D update

I had lunch with mom the day before thanksgiving
I took a video of her "reading" to me...
My brother drove from out of state to see her.
I was shocked-
no one visits her but me, and I thought for sure he would
want me to meet him there
Guess I beat him to it by saying i was going elsewhere.
I know he had NO idea what to expect
I havent asked him how it went, but I can imagine
her wondering who this man is and insisting he
have her plate of lunch.... getting mad.

Oh, I think I actually got mom onto a different
Med D prescription plan.
I swear she makes too much for extra help to cover
the premium ...
but the company said they had her down as qualified for extra help.
So, if it works out it will be zero premium, zero co-pay.
( I really have my doubts though)
I am just so tired of dealing with the finances of others.

not here not gone

Every day people say to me
"How's mom? "
fine , I answer.
"Tell her I said Hi, give her a hug"
they reply knowing she has Alzheimer's.
day after day after day, month after month, a year .
It makes them feel good to know she is doing well.

for me though
Each time it is a pin prick
a drop of blood ...
She doesn't know who I am, really.
She doesn't get to do any of the things that made her happy.
she runs around looking for - me?
I feel like I lost one parent
and the other one is on life support or in a coma,
something weird like that... not here and not gone.

all I read say "they're in there" and "enjoy them while you can"
But all you really do is jump at every phone call
reporting every fall....
waiting.

Went to Cemetery

I went to the cemetery because it was Veterans Day the day before
and I wanted to see the flag honoring him.
There still is no stone yet, i dont understand why because there
were some that passed in july and they had one.
I gathered some pine cones and pine boughs and set them around
the base of the metal marker, then sat on the grass.
I watched others come and go....
taking pictures like I did, standing there for a bit and leaving....
A family wandering around trying to find "grandma"
A turkey vulture slowly floated over
looking down at me...
-
-
-
-
dad's coffee cup

Mom's friend Quit

My poor mother has been searching ,
cranky, and too restless to sit and eat.
The fun recreation department girl that she thought
was me has quit to work closer to home.
Everyone there says they were " tight ", really close.
I has been many weeks..
I feel so sad for mom...

the aid ended up having her sit in a lounge chair with tray
table when i was there because she could not convince her
to sit at a table.
I sat next to her and ran my fingers through her hair
and held her hand, sneaking in forkfuls of food.
She was red all over and hot, but after a while calmed down.

Battle-ax nurse came and gave her only 1/4 her meds
- it was orange flavored- everyone knows to put the crushed
pill in chocolate.
 I was shocked to see her just throw the medication away after
one try, the nurse was extremely agitated and short - as usual.
The other nurse is SO much better .

Contrary Mom, poop and glasses

the last couple times I have visited mom she has been quite
contrary, kind of bossy.
I wonder if it is because the activities lady she liked is gone.

The other day I was talking to an aid who told me mom had a bad time in the bathroom.
She had diarrhea and had gone into the bathroom herself and made a HUGE mess.
Then when the aid tried to help her, mom fought her yelling and hitting her
and got poop everywhere. She had to change moms clothes and clean her
up fighting the whole time.
I relayed this to the nurse that it sounded like mom did not need to
be on daily laxative anymore as the aid told me she was
pooping a number of times a day and making a mess.
The (Nice) nurse didn't know this and looked it up.
Sure enough the records showed
numerous bm's a day.
I am Really disliking the other nurse Deb.
She had called me saying mom's glasses had been stepped on and broken--
they were fine.... she had had mom on daily laxative and had not discontinued
it after mom was pooping multiple times a day for a week!

I told the aid I took care of it and she was very appreciative...

This is why you visit and advocate.
The records could show plainly the patient needs something, but if
there is a person in charge who either doesnt pay attention,
doesnt like the patient,
or has an "I'm the Boss" attitude over the aids and they feel helpless,
things arent going to get done.

The (nice) nurse called the dr immediately and got the dosage
lessened while i was there.

My Mom's Hand video

https://youtu.be/sIQRWfuIULo

You are no longer payee

I got a letter from social security saying this-

"Thank you for your willingness to serve as a representative payee.
We have decided it would be best for _____ to have her
checks sent to another payee. "

WHAT ?! Who??? How??

I got on the phone and held for an hour only to be told that
the memory care place is now her payee and her SS check
will go directly there.
"They do it all the time" was the woman's only answer as to
how this happened without my consent or foreknowledge.
I mean, wouldn't someone have to sign a form or something?
Apparently not -
Nursing homes can just do what they want!

All I can say is at least she has a pension still going into the
account so I can pay her premium and have the sixty dollars
for other expenses.
Unless the account closes or something because it isn't a
"Rep For" account anymore, opened by SS.

Just unbelievable- I'm her DPOA for cripes sake.

Last month I met with the finance director to pay my bill
and I asked for a form to fill out to be able to pay mom's bill
directly. That is ALL I did.
 She gave me a form to put the routing number on.
She says I asked her to make them payee
which I did NOT.

Obviously I am not going to change it back and cause more problems
but talk about a freak out at the time.

Twenty Three Falls

So far ......

Mom has lived in the memory care place for almost a year.
the last fall was a couple days ago..
they found her on the floor in the bathroom
with a cut and bruise on her forehead.
fck this is going to happen when i go away i know it.
" just enjoy yourself " yes i know .

.
last night I wondered
once again
How her end of life would play out...
nothing like dads quick exit i am positive

I can see it with the other residents
tipped back in their Geri-chair so they cannot run around..
buckled in as they struggle to lean forward and get out..
bored
or sleeping through their meals as the aid cannot awake them..
easier for them to take outside and events though..
then unable to move on their own, spoon fed..
then laying in the bed in the hospice room...
then
disappear....

a note-card of remembrance

A new resident arrives

Visited mom last week

She was no where to be found and they were almost done serving lunch.
The floor is once again filled to capacity so they were busy hand feeding many.
I gave one aid a back scratch- rub as I walked by, they work so hard...

I found mom on someones bed with no-skid socks on with a giant hole in the toe.
I got her to a table and lunch , got her shoes and socks on her.
Makes me wonder what would have happened if I had not been there...
She ate her chopped up chicken, veg , some mashed potato.
She was picking her teeth and actually let me use one of those plastic
dental floss picks! I was happy to see that her teeth were not full of past
crap, so someone has been taking care of them.
Unfortunately, the nurse popped in a medication and mom soon
got more and more drowsy till she couldnt finish her meal.
I got her a cookie and walked her over to a couch before she
nodded off.
Sat there with her and put a blanket over her and pillow behind her head
till she went to sleep.

The week before, they called saying she had been dancing-
the caller giggled saying that another resident hadnt liked that
and had pushed her and the two went down together...
she said mom was giggling when they picked her up.

Mom had fallen and hit her head

After last visit, I had gotten a call at 7pm saying mom had fallen

in a room and hit her head on a machine in the room and was bleeding.

They wanted to send her to the emergency room alone.

Thank goodness the nurse understood my angst about mom

not knowing what the heck was going on and going nuts.

So, she said they would try to catch her and treat it "in house".

so I hung up and waited.

In the meantime we wondered how they could just send a confused

person off on their own? 

Also, I weighed the consequences of my driving up there and staying with her.

Now most of you would reply that you would have run up to 

the hospital no hesitation.  But you see, she would forget the whole thing

afterwards , and I would be deeply effected by it or worse mentally.

After forty five minutes or so I called back...

They had finally caught her and took a better look at it and put ointment 

on it. Couldnt do anything more because she fought them.

As I was speaking to the person, he had to cut the call short to chase

after her..... saying something about her 

cart was full and she was going shopping again in someones room lol)

The next morning I called and it was a complete non-issue!

Oh, she's fine and it looks fine, just cannot get it wet for five days.

Whew! another fall dealt with.

On an elderly forum I use , I asked about this issue of sending a person

with Alzhiemers to the hospital alone.

The overwhelming response from people who work in the hospital was

that it "wasnt their first rodeo" and confused people come in all the time

alone. They "medicate" them, treat them and send them back as soon as possible.

The one and only time mom was in the hospital she almost fell multiple times

after she got out of bed without a walker. They ended up putting a net over 

her bed and drugs. 

I consider this to have been a practice run for the many falls and the serious

ones coming where the hospital will indeed happen.

My mental state after being there with my parents in the hospital

was NOT good at all and they were fine after.

Because of this, I would have no guilt not going and doing everything 

over the phone. 

I have to.

My dad's funeral

Full Military Honor Ceremony was performed...
They did the 3 volley salute
Played taps
Unfolded and refolded the flag ceremoniously over the urn
and gave it to my brother with a speech. Then also presented him
with the spent ammo cases..
My nephew stood with his hand on my shoulder which i appreciated.
He read the obit that my sister put together..
Then I got the pine needles and tossed them in the hole and
spread them onto the square of turf.
 I also tossed in a couple wrist
bracelets from a nearby air museum we had visited together..
 Placed a couple pine boughs by the marker sign.
I thought at least someone would think to bring flowers, but
no one did. Such a bunch of strange people.
(flowers in pic are for a different soldier)


I was feeling pretty good till the person showed up.
Then I had a visceral feeling of blackness that would
come over me at the sound of her voice.

Thank god my bf loaded back up the tables and dad's uniform
into the car and then, without provocation, whisked me away.

Here are some photos of the ceremony.
Loved you dad.

Preparing for the burial

I called the funeral home yesterday and they confirmed they had
scheduled a full military honor ceremony at the cemetery.
Going to bring two small tables
one short one for the urn and another for his Army uniform, hat,
dog tags and POW dog tag.
The one for the urn will have his army blanket and a tapestry
table runner folded in half with the tassels hanging.
I will place the flag next to the urn till they take it to fold it.
Of course this will all be for naught if it rains.
I dont know what to expect if it rains.
they are saying it may rain...

I want to line the hole with pine needles but i am not
sure if they inter the urn right then.

I posted a photo of the urn earlier... it really is beautiful
I'll shall see if i can go pick it and the flag up today.

I have finally defined what happened to me (described in my other blog)
it is called 'psychological trauma' - what a strange thing to happen.

This Week

Thursday I went to mom's care plan meeting.
I was still doing well and mom was good.
Well, she was great but didnt want to be touched-
this is because she had bloodwork done
at un-godly o'clock early morning.
I know it can be quite confusing to be accosted and a tight
tourniquet put on and then poked!
I spoke with the dietitian about her hating fish and to make
sure she gets her yogurt drink- and the fact she had not gotten
anything to drink last time i was there.. she said mom "gained"
three pounds. The rest of the meeting was just them saying how
funny she is and that they enjoy her sense of humor.
How she actually recognizes her room once things are pointed out
and she actually recognized a friend downstairs :)
they said she is always asking for me and sometimes thinks one of them
is me.
Meanwhile she sat and "read" a paperback book.
After I left I went to goodwill and bought some sweaters, a
summer hat, summer scarves, and a book on flower arranging.
 She loves to dress up so the hat should be fun for her.

Yesterday my anam cara and I went to check out the veterans
cemetery. We watched one military honor ceremony and got
the gist of what will happen next month.

Then after lunch he drove up to see the stone
 paver I had purchased to be placed in the veterans memorial park.
We found it and it wasn't misspelled or anything,Whew!

At least all the paperwork is done WOOT !

went to see mom

i was a mess by the time i got there...
felt like i was going to barf, I had to sit in the lobby and calm
myself. Everything was boiling over emotions.
I crept into her wing , got a hug from nurse , and went into
mom's room and lay on her bed...
I poked through her clothes and noticed they had each hanger
set up with each days outfit- pants and shirt.. aw thats nice.
After a bit i went to sit with her, she was eating ground chicken
and noodles. She had nothing to drink so I asked the person to get her
her yogurt shake.
She was looking really good - clean hair and nail polish
she was talking word salad but i could understand her questions..
mostly wanting to know if i ate and what it was, and things outside
the window.
We sat for quite a while and i had icecream.
she was tired and cold so i had her follow me to the couch after
a good back rub and scratch.

I felt SO much better.
I wrapped her in a blanket and massaged her swollen ankles ..
I sang "good ship lollypop" to her and soon she went to sleep...
Love you so much mom, what am i going to do when
you are gone also? ..........

Went to funeral home again

A woman there who has helped me on and off since 2010 called
me and told me to come over and she would help me
schedule dads military honor ceremony.
She is truly a wealth of information and hands on help.
No giving me phone numbers and telling me what to do
like the other guy there.
She understands how a person can just be frozen and not
be able to carry out things that have to be done for a
loved one who has passed.
She took copies of all the paperwork and all I had to do was
provide her with a date.
Back in 2010 she had given me a list of things to do to
make my mother and fathers future easier...
she had me make my fathers bank account joint with survivorship,
and use my moms money to prepay cremation before title 19..
and countless other things I did.
Yesterday she was proactive in all aspects again,
telling me what others have done if they do not want to attend
the ceremony or personally bring up ashes,
what she had on her fathers stone, what to do with
the SS death benefit mom got and the VA one.
She told me what phone calls to expect and what they
will be about.

She also told me the ceremony is only ten minutes in length!
if you blink or if late, like my siblings are notorious for,
you will miss it.
She asked me if I was sure about scheduling a date without
asking everyone first... I replied that no one is speaking to eachother,
I asked them to tell me a few weeks ago if they had any
specific dates not to do it, its on the weekend,
and it is a month away.
Done.

Paperwork for mom and dad hell-p

When a person passes away the paperwork and phone calls can be overwhelming.
You have to discontinue pensions, VA benefits, S.S. and go through all the
phone security each time to speak to anyone.
Since I did not have any of his specific policy numbers it was even worse.
After stopping his, I had to go back to them and get letters to prove it=

Then it was on to mother-
She is on title 19 and they want to know all changes in her income.
The Department of social services needed specifically written letters from
each of dads contacts saying that mother would, or would not continue
to be receiving monies from them. omg wah!

At the same time I apparently will be receiving a redetermination form
as to her title 19 status. DSS said they mailed it on the 27th and I have
not gotten it yet.
OH! But I DID receive a letter that she didnt qualify - WHAT??
This letter was mailed on the 22nd !!
Yep, they screwed up big time.
thinking about that now, they need to send another one before deadline.

Next was the lifeinsurance policy, everyone bugging me about that-
wtf. - ok I put that in the fkn mailbox yesterday.

All this piled on top of the heartbreak of finding...
.....having a hard time putting this politely....
Gross criminal misuse of his bank account.

Dealing with the pain -
 loss of him, guilt of not protecting him, callous disgusting sibling...
The fact that I do NOT want to see any of them.

Next I have to schedule a date with the veterans cemetary.
Thank goodness the funeral home called me and told me to come down
and she would help me .

Mom really losing communication

My mother is continuing to lose weight.
They are FINALLY going to treat her low thyroid.

When I visited her two days ago it was the first time
I really had no idea what she was trying to communicate.
All kinds of word salad as usual, but it was worse and
 for the first time I truly couldnt figure out what she wanted...
She was walking really slowly too,
but according to the staff she had been a real busy body that morning
noodling around in everybody's everything.

Late stage Alzheimers and what happens next =
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101

I still have not set a date for the funeral.
I have had no time alone to grieve.
SO many phone calls have been made and more to make
because my mother is on title 19 and now will be losing income.
Yesterday as I walked into a store, the funeral home called and
said I can come in and pick. up. the. urn.
I hung up and tears filled my eyes......
What ? I can't do that! what will i do with him?
I will call today and see if I can leave there till i make a date.

Everyone says a funeral is for "the living"
I am setting this up to honor dad only.
I do not want to be there to receive 'condolences' .
(How about sending me a card? Zero condolence cards.)
I do not want to partake in idle chat and happy stories of the past
with 'family' who I havent seen in decades.
its not a family reunion.
I honestly feel like giving the urn and flag to the proper authorities
and leaving.
I would rather see the gravesite alone later.
i know i wont be allowed to do this though-
have to be a good girl and do whats right and proper.

Phone calls and Pain

Since the day of my fathers passing I have been ill.
On the phone all day canceling his auto deposits.
All the packets of forms to be coming to confirm death.

I havent been able to get over to see new baby.

I find I cannot set a date for dad's funeral
because it will be so final -
i cannot imagine going to it ...
i cannot imagine the fact that I have to bring the urn.
i cannot imagine getting out of the car there....
i dont want to see the hole....

.
omg  i dont want any of this

My Dad's Urn

Today I saw his (empty) urn that had just arrived at the funeral home.
I had special ordered an engraving onto a plain cherry box cremation urn.
I wanted something to depict nature because he was a hiker.
This is a three dimensional engraving  of a trail through hills
and trees.
I am SO pleased with how it came out !
( i had never seen an urn before)
Now to wait for the ashes and schedule the
Military Honors ceremony.

My dad Went Home

When I was a baby he would put me on his shoulders and bouncy-walk
around the house bending low for the doors...
or make clickity sounds as he bounced me on his knee like a horsey.
When I was a toddler and beyond he could frighten the living daylights out
of me - out of all of us.
I remember my joy at his return home from work, I would run and grab him
around the leg. His suit smelled bad from the chemical company.
When I was deathly ill and mom ignored me, he was the one who insisted
and drove me to the dr's- I can still see him carrying me in
in my bathrobe... He brought me comic books...
He would carry me on his shoulders as well as his 100lb backpack on hikes up the
Appalachian trails.. Mt. Katahdin.
Many many hikes along the Appalachian , staying in the lean-to cabins.
I remember waking up sticking my nose out my sleeping bag into the cold morning air
to hear the pans clattering... warm Familia cereal.

Baxter state park ranger feeding a raccoon marshmallows..

He loved the birds and had quite a setup, he went through tons of sunflower seeds.
The Chickadees would wait yapping at the back door for him and would land
on his hat. He taught us to stand very still with seed in our hand
and those tiny cold feet would clasp my fingers...
Christmas he always chose the best gifts !
He and I shared a lot of nature together...
the mother skunk that allowed us to stay with one of her babies while she
carried the others back home- he was tangled in a net, she came back for him.
after we got to play with him a bit.
The Golden Eagle we had sitting in a tree, the Gyrfalcon also...
the owls he would call into the yard at night.
He taught us to toss up pebbles for bats to catch.
The car trip with mom to see his first grandchild where we rode mules down
the grand canyon, saw white sands NM, Mount Lemon AZ telescopes.
He taught me how to shoot, snowshoe, and endure any pain life had to throw.
When my sister and then I got divorced He jumped into a rental truck
and rescued us.
Yes, we are messed up because of him But,
in my opinion he more than made it up after we were adults.
Always the joker
Always asked "What are you doing for fun??" "How's the car running?"
SO much more I could write...

Visited Dad yesterday

Even though we hired Hospice last week they still have not been to see dad.
I found his bedside tray by the wall away from the bed so he had no
access to water.
Water is all he is taking in !
Also, they thought it ok to just provide a giant thermal jug for him
to drink from. Hell-fuckin-O ??!!
the guy is dying, how is he supposed to lift that ?
Yes i said something, yes I called today.

He was restless yesterday, but able to speak and
drink from a small cup on his own.
He really just wanted to not be bothered
and just rest.... I could tell he was "busy"
preoccupied with his symptoms.
"I love you too" he said, and waved goodbye with his eyes closed...

Saw mom also, she was a vision of summertime
in her socks, flowered blouse and big floppy summer hat.
Rummaging through someone's room lol .
"Oh! I havent seen you in years!"
It was such a relief to visit her after seeing dad...
Every bite of chocolate icecream was a surprise of delight.
"Ooooo! thats GOOD! "
I found her shoes hidden in her dresser but didnt bother putting
them on her.
Sat on the couch with her a while holding hands under a blanket
till she fell asleep........

Circle of Life

Meeting my sisters at dad's today with Hospice.
Picked out an urn yesterday.
Feeling.... ?
Not sure how I am feeling, like I have to be strong and get through but weak.
Hoping, wishing his sister comes in spirit to greet him.
Just dont want to see him like this- wish i could avoid the whole thing...
Feeling cranky.
Wanting to be alone...

Update:  The meeting with Hospice was a joke. They kept asking my
sister questions
 The answers she gave them were ill-informed...
 he is bed-bound and dying!!!!!
I just sat there astounded.



Only one spark in this is that a new baby will be arriving soon....

Saw dad today

They called and spoke about Hospice and the fact that he isnt eating
or drinking. I said as long as his kidneys are functioning , to give
him IV electrolytes. As usual they could not get a hold of local sister
for answers.

Dad, Mom, Life

Since my father's illness in the last post, I have been dealing
with phone calls from there.
Local sister cannot be reached
Various nurses and doctor calling to report on chest xray
and bloodwork - about to be done, done, and results.
Each time I spoke with them I told them to do a urine test
because he was messing himself.
I was told his bloodwork showed no white cells and they
would not be doing a urine test.
Well guess what, they called three(?) days ago to say he has
a UTI.  ... well fkin duh!

I got a call that mom fell again, at least she didnt re-injure
her back!

My apartment has been having flooding problems
and now that humid weather is here it is never going to dry up.
Went into the bathroom and "plink" a drop of water hit my head....
stubbed my toe in the night trying to avoid wet carpet
by my bed...

feeling like packing up my belongings :"(

Dad

They say he is doing better now.
I was pretty upset when I found out that nothing had been written up
about him being sick last saturday. By monday he was really not well
and confused. The nurse got him on antibiotics and took a chest xray
which was neg. Tuesday he was back to normal?
Thursday he had hard-boiled eggs for breakfast.
I told them once again that he has NO TEETH and that he cannot
eat a sandwich at lunch. She replied a "soft sandwich is considered
 within his ground meal requirements".
Sorry dad, I cannot do anything more for you, even though I dream
of making soft-boiled eggs for you to enjoy.

When I visited dad with my brother I experienced
dissociation once again. It felt like I was going to
float away out of my body - I actually held onto the stair guard rails .

Mom and Dad on the same day

My brother came to visit !
We went and saw each parent, whew, talk about
psychologically draining.

First of all we didnt find out till after we had been touching and
I had snugged my father that he had been very sick
and vomiting and had a fever !
Eeek.
He was weak and tired, but knew us.

I was SO afraid of bringing any bug to mom...
Mom didnt know who this man was who came and sat with her
but she did recognize his name on the card and identified it
as her son ! Yay!

My Thoughts on Medicaid

I was told by many to buy all kinds of (unneeded)
things with mother's money before she went on medicaid.
Big ticket items like TVs, car, whatever.
I responded that I had SAVED this money explicitly to pay
for her care and a nursing home.
Why do people not want to pay for this ???
I felt it was an incentive to get her into a home faster
and believe it worked.
Here is a quote from a retired nursing home admin. on a forum
voicing my thoughts exactly.

"  I've taken care of millionaires who legally transferred assets and were eligible for Medicaid.
First, there is a legal answer to your question that is best answered by an elder attorney. The look back period is a federal regulation and is the same for all states (five years).

Second, this issue also has ethical implications. Nursing homes do not make any money on Medicaid reimbursement. This is problematic for both for profit and nonprofit facilities as both have rising operational costs and reimbursement from Medicaid is designed to not allow a profit and is retroactive in its cost adjustment (18-24 months in some states). The point here is that as more people "plan" to avoid paying the non-Medicaid or private charge for nursing home care, the fewer residents are contributing to the basic business that makes a nursing home succeed in terms of being able to offer competitive pay/benefits, more nursing staff, better activities, etc. There is a STRONG correlation between those facilities that have a majority of Medicaid residents and low star ratings on Medicare's Nursing Home Compare site. And the kicker here for me is that there are numerous responses on this website that think nursing homes are terrible places and money grabbers but the same people would scheme to hide assets and deny paying their fair share. Medicaid was established to ensure that those who truly need care are able to receive it, not to ensure that the more fortunate could have their cake and eat it too.

Third, there is an irony here as well. The fastest growing line item in almost every state budget is the Medicaid expense for long term care. This is due, in large part, to families transferring assets to avoid paying for nursing home care. Twenty years ago I was administrator in a facility that had about 60% of its residents paying privately. This facility is now averaging only 12% private pay. As the facility has had to rely on Medicaid reimbursement as its primary source of revenue, staffing has been reduced and resident satisfaction has declined, as one would expect. "

Mom Fell

On the twenty first of April
mom was found in the morning by her bed unable to get up.
She had landed on her tailbone.
Xrays done a few days later were found to be clear
but she is still hurting.
Yesterday I went to see her.
She was sleeping in bed and I opened the blinds because it was
getting late for lunch and they were going to let her miss it.
(damn I hate that)
The first thing she said upon me saying my name to her
was "Goody" - sigh, I love that.....
As she awoke I lay with her and we "nom-nom-nom" kissed
cheeks and hugged.

Oh, the way it hurt her to try to raise herself was heartbreaking.
I had her roll to her side instead and brought her legs over
and she toughly sat up and after a bit she was walking.
She walks fine, and sat at the table fine also.
Her speech is word salad all the time now but I have a nice
reassuring conversation  with her comprised of nods and smiles.
Saying things just exacerbates anxiety because they hear you say
weird things.
She sat with her hands in her lap, but was quite happy to have me
feed her, so I did .
She was able to get up from the chair no problem so we went for
a walk and back to the wing where I sat her on the couch.
Adjusting herself on the couch was ouchie but soon she was nodding off
and I tucked a blanket around the back of her neck to keep her head
from getting a crick.
I stood for a while stoking her hair and forehead before leaving....

My Father

Went to see my father for his birthday...
once again he didn't seem to care about the things
I brought , just wanted the chocolate and tried to deceive
me into bringing him downstairs to where the car was.
I cannot take him in the car, so it was outside to the patio.
The psychological impact of the visit was unknown to me
until the next day when I found myself with extreme fatigue.
It felt like gravity was stronger, pushing down on me..

This morning I awoke with the old feelings and memories of
his mental abuse...
He would point his finger in your face and force a
stare with his eyes boring into your soul
purposely hatefully sending thoughts of pure hate and evil.
He would derive great joy in making us weep by the
bombardment of our spirit and soul by this hate.
My sisters and I were effected for life by this,
none of us could stand blue eyes or anything pointing
at us (even inanimate objects) .
He even did this with grandchildren to make them cry.

How confusing to mix this memory with the man
who would carry me as a baby on his shoulders
and bounce me on his knee..........

Mother's staff meeting

I found mom not thrilled with her lunch.
It was mashed up Kielbasi and the pink color made her think
it wasn't cooked and she also kept spitting out the tiny pieces of rind.
After lunch, a couple bites of icecream sandwich,
and a puzzle (yay she was able to do that!)
 we walked over to the tv room for the meeting.
I informed them about why she wasnt eating her lunch
and I was informed that she had lost four pounds!
Also that she sometimes goes without a meal because she is "busy".
I was not happy about that at all, but they believe in letting residents
do their own thing...
They are going to start yogurt shakes. My father's place is doing
that with him also to put on weight but he says they are too sweet (!)
Anyways, there was the usual "we love her, she's so funny" talk...
Sorry, I am such a pessimist lol .
There were two photos of her behind the nurses desk,
one of her with a wig perched on her head that she had found,
and one of her grimacing with a garland of fake roses around her head.
(she grimaces if she has been told to smile for the camera)
They find her entertaining...
I brought up how she wasn't herself on her birthday and that started a
revealing conversation. They said she hadn't been right that entire week
and they thought it was spring fever or something and couldnt figure it
out. Then that saturday she was back to normal.
I told them it was because of her birthday and I was told that when one
of them brought her birthday balloons and tried to sing to her
mom would have nothing of it and put her hand up and said "no!".
When I had gone to see her that day she wanted to go "home" and
even said her home state ! She hasnt done that forever.
After the meeting I sat with her a while and held her hand and she
snugged in...
When it was time to go she said the most heartbreaking thing....
"I'm going to cry"

Short Recap

So last night on NOVA they said that in 2020 there should be a drug available
that is being tried on people now.
It works like a vaccine and causes the brain
to attack the Amyloid plaques. Amyloid plaques are big balls of
junk proteins that have stuck together instead of being flushed from the brain.
Junk proteins are flushed from a healthy brain every night during sleep.

I was unaware that trials have been going on for years and have had
such success with these drugs that they are beyond the trials and
directly giving them to people.
I learned that the reason past drugs have failed is because they cause swelling
of the brain. Well, they are using these drugs on moderate patients whose brains are
full of plaques, of course an attack on them is going to cause a large
inflammation response.

The show was about two groups, a large percentage of Mexican family who
contract it (and die) in their forties,
and people here who get it in their sixties and older.
They now can detect the disease by radioactive dye that attaches itself to
the plaques and can be seen DECADES before symptoms present themselves.
Also by genetic testing, they were able to find the genes because of the
mexican group.

The conclusion was this-
The mexican group was to be given large doses prior to their thirties,
why? Because according to the MRI radioactive dye, their brains were already
full of plaque ten to twenty years prior to symptoms.
With the dye test and genetic test they were able to find who needed the drug
and who didn't. This kept down the cost and accelerated the testing.
The moderate ALZ group here was shown to slow or level off the progress,
 but lets face it they were being treated too late.
They need us to go in, get tested, and start treatment NOW
before we present with symptoms.

I had a difficult visit

Driving to see mom I had the usual slight anxiety and heavy
breathing. The anxiety of wondering what state she will be in.
When i came in she hadnt had lunch yet and I was told she had been sleeping
in a chair.
I saw the 'pill lady' pop her a crushed pill as I walked over to see her.
Mom smiled and i went into her room to take my coat off and check
out what new things were missing. She had put water in a vase of
fake flowers and it had leaked and ruined the cheap drawer thing it
was on- woops!
We sat and ate lunch with a lady and her mother I see every time.
She told me she wont go on a trip more than an hour away, she gets too
anxious... I understand this feeling very much...
one day I hope to overcome it though....
Mom sleepily ate her entire plate of meatloaf, mashed potatoes and veg.
Then we went to the tv room where we usually color...
Usually....
she was too groggy so I just squished close to her and looked
at a magazine. I couldnt even get her to smile for the camera,
and her eyelids were red, the pics I did get she looked drunk
so i deleted them.
The other lady left because her mother fell asleep in her chair.
I told her that I hate to see mom like this, but I dont have to
deal with her all day like they do anymore...
But it is difficult.
Yes, she is healthy and certainly calm so...

Not looking at the camera, she looks great, but I know the truth
of how she really looked.

242 Rainbow Division

My father was in a battle in WWII.
I have a video of his description and now I have found an online book
of the Battle of Hatten.
https://archive.org/stream/42ndRainbowInfantryDivisionACombatHistoryOfWorldWarIi#page/n25/mode/2up/search/242

Visited Dad

After preparing myself Once AGAIN for my fathers death,
going through the thoughts of what I would do afterwards and settling with
"Ok I'll be fine!"
I went to see him and dammit ,

I love him.

....shit....
 it would be so much easier to not see someone and then they die
and you have kept your distance so it doesnt hurt that much.
haha
what a crock of shit.

So, since my sister who is supposed to be his advocate has not done anything,
I brought over his hearing aids and a bottle of wine.
Wine?! Yep. They can dole out 4 ounces of Merlot like they would a medication.
They even keep it in the medicine closet.
The nurse said they had tried to contact sister about this to no avail.
It is a treat he talks about as much as chocolate.
 I also am going to make sure they get that man down to the candy
machine for chocolate.
The home he is at is astoundingly better than his last one-
there is Zero smell.
Oh, and I found out that they had sent him to the hospital because they saw blood
on his cath. and bloodwork found white cells. This is a far cry from the other
place that let him get so sick he was delusional wandering the halls and they
still didnt send him to hospital.
I saw his urine bag and this was the first time I saw it not be red inside.
Much healthier!

As far as mom, they had been giving her a quarter pill twice a day...
I will find out if they are still doing it three times now or not.

Confessions

none of my siblings or I seem to be able to care properly for our aging parents.

At least to my specifications of care.

My mother's 'nurse' that i do not care for, called me and said that for unspecified

acts of resistance she would be giving mom an additional dose of adavan per day.

 I called the next day suggesting to someone else that it just be used

when needed after they looked at the report and found no reason specified 

and said maybe she was just having a 'bad day'. 

Anyways, back to the nurse-

She has an obvious communication problem even in person. 

She will state loudly what she has to say and will answer 

your questions by repeating her sentence. Talking over you.

On the phone she sounds like she is panicking, but i am sure it is just 

her, spewing out the info and wanting to hang up quick--

or at least thats how she sounds- 

In person she is the same, and I have tried multiple times to talk to her

only to have her interrupt me with her opinion or to call out

to someone else and tell me she has to 'go'.

Last time, I just turned my back on her and walked away.  

Back to confessions....

My father was back in the hospital for UTI yesterday.

The sister that is supposed to be advocating for him has never called about him 

or visited. 

What have I done for him? Nothing..... 

I have not called either. 

I know that in order to receive decent care in a nursing home or anywhere,

the family has got to visit. Phone calls can be and are just glossed over

by the person behind the desk. "Oh, he/she's FINE and functioning well!"

then you drop by and find them stoned or feverish in bed, sleeping 

through meals and dehydrated.

and yet....

How many years can a family member deal with this without succumbing

to apathy themselves? 

Especially when lifetime mental illness has affected all the children because

of said parents.  

Thankful

It is such a relief when you see your parent doing well.
Mom has adapted well to her new home...
she is calm and happy saying hello to everyone and not resistant
to things being done to her - like toileting or even flossing her teeth like i did today.
Her legs were not swollen, or her knee as was the case a week ago.
While she ate lunch I gathered all the tons of books she had collected in her
room, found her 'lost' glasses, and power cord to her bed-cam.
We had chocolate icecream and colored.
When it was time for me to go, we walked back to her room and she
waved to me from the doorway (smile )
a good visit and so very thankful.

Visiting from a patient's view

"just because your mom doesn't remember you in the way you remember people...her graciousness and joy at seeing you and spending time with you says that she enjoys the visit.
I have dementia, so I just want to add a little of what it is like to help give some perspective. We forget who you are, and we forget how we know you...we forget how we are connected...but we FEEL you. We FEEL your loving presence...or, your scared one, or your worries...whatever you bring with you, we FEEL.
If it were me deciding if you should visit me, I would say that if you can resolve whatever your are experiencing and bring positive warm feelings, then come...but if you can only manage to bring negative emotions then don't.
Friendly people coming to say hi, is always nice. Watching this happen to a loved one hurts. If you can process that thru and just be present for her...awesome, but if you are not there yet that is ok too.
Very importantly - just because she doesn't remember you, what your name is or how you are connected...even if she cannot talk - SHE is still in there! Dementia is like the layers of an onion covering us up one by one...but we are still in here,
 and we are reaching out and trying so hard to hang on.
 Connections with people are like light in the dark.
  Don't let people try to tell you otherwise."

Dad. High Strangeness

My sister relayed this info to me in texts-

The other night my father's foley catheter was somehow
mysteriously cut and pulled out of place.
They sent him to the hospital in a lot of pain.
 The home was going to look for scissors because the catheter was clean cut
through.

My father is too weak to handle scissors,
and he does NOT have any.

My sister spoke to the nurse after he returned to home but did not
ask anything about what happened or relay the point I made about
the scissors.

Fiddle Quilt

Two days ago we went to see mom again.

I just couldnt fend off the tug.

Brought a "fiddle quilt" for the place.

Made it out of fleece and some ribbon with beads, a toy,

and some colorful large buttons.

I made it small enough to fit on the tray they put infront

of a resident's wheelchair.

When we arrived she was looking intently at a magazine and exclaimed

her eyes were bad. She didnt have her glasses on. They were behind the desk.

So she couldnt hear or read, great.

I mean the place is high-class and beautiful so I cannot complain, and

she is happy .

When the nurse told me her hearing aids were ' missing' last week

I told her to put the box with the batteries they had been in into her closet. 

This time when we were there an aid came in with her hearing aids - !

She said that mom was digging in her ear so they didnt put them in.

I told her to clean moms ears and I gave her the box to put the aids 

back into- she had never seen the box before.

Then I got out mom's cd player and put on Neil Diamond and she sang

and danced. Yes it was loud, but she was happy. 

I will have to tell them once again to have her legs looked at,

they are swollen.

Here is the fiddle quilt (or pad )

Mom Falling and Ears Gone

My mother has fallen around six times (?) since being in the new place.
Thank goodness she is wearing a padded girdle thing.
She fell yesterday while in another persons room. She was behind a door
and a nurse opened the door and startled her backwards.

When we were there for the christmas thing she couldnt enjoy the music
so I asked for her hearing aids and put them in.
The nurse said they had been with-holding them "because she doesnt like them and
she is doing much better"
How can a woman who loves music be better??
I visited her the other day and was told that the hearing aids are
gone. She seems more restless and bored than ever and she cannot
hear the floor music playing.
The staff had been telling me for a while that she was resisting
having them put them in and they do not push their patients,
so I didnt press the issue at all.
Now they have disappeared.