A new life?

This morning I feel like I am on vacation.
No, I have not been drinking and I am not even taking the
recommended inhaler. I am just fine and dandy.

The change as I said before is my free time.
Time to do what I want.
I have not had this in so long.

In fact I always went to work with my husband,
if it was the shop, the shows, or him painting at home, we were
always together.
I liked it that way and so did he.
On occassions he would do an art show on his own and then
I felt strangely free and ran around the house wondering why
this was "fun" . Just to be alone now and then was fun but I
still wanted to see him with open arms when he returned.

Now that the daily routine SEEMS to be set and he goes to day care.
(Well behaved) He gets into the van without a struggle, and
comes home happy that he "worked" so well.
Now I am FREE from about 10 to 4 , WOW.
I can do what Jeannot wants.
The freedom is new to me, I either accomplish a lot in a day
and feel delighted or I accomplish almost nothing and try
not to feel guilt.
My moods have gone a complete turn around.
I told the kids that I can take care of him another 20 years if it
stays this way..................

OK so I know better but I am not going there.
I will not spoil the mood for the day.

I also am learning via email about other people.
I now met a lady in her 60's who has : polio, (in a wheelchair)
cancer (her chemo made her legally blind, deaf in one ear and loss of taste and smell).
She lives alone, she is brilliant and had a great career but now all this ....................
I do not think that for one single minute I have a right to sit on a pity pot.

When we look around us we may see the pretty houses with manicured lawns,
tulips cropping up, people walking their dogs and little children around the
block but we never know what goes on behind that door and windows
covered by lacy curtains.

There are lives going on in there and some have tragedies of all kinds and some
have it better but we do not know as we stroll or drive past them.

websites of interest for women

For more than a year now I have enjoyed reading the website
WOWOWOW , supposed to be fore women over 40 and since I am
going to be 77 soon I doubly qualify.

All kidding aside, it is a fun website with many points of view
and there are ladies under 40 joining in.
Politics, gossip, health, problem solving, just about everything is
being discussed here.

The founders are a bunch of ladies, well known to almost all of us.
Marlo Thomas, Leslie Stahl, Candice Bergen, Liz Smith, Joan Buck,
Joni Evans to name a few.
All very bright women and the staff share the daily news, past
happenings, literature, art etc..........

It is here that I found out there was a website which helped me
get a VA pension for my husband. I did not know about it until
a WOWER told me.
That helps me a lot also managed to pay for day care.

The other site is Trusera.com
It is a site for health issues mostly at this point for people
who have children with autism.
The site was started iN Seattle and has a great following.
I started to write in there for Alzheimer's caregivers but I sort
of got lost in the autism flurry.
Amazing how many parents are facing this today.
In my own family we have 2 boys afflicted with some type of autism.

Try them and see if this is your cup of tea.

Tug of war Carwen always wins

Valentine Day and all is well with the world

I am very excited, my son in law, Frank, came to cut down my overgrown
trees and shrubs and started to refurbish my driveway with new little stones from
the river. They are a terra cotta color and when the rain will come they will wash
the dust of them and be truly nice to walk on.

I am getting excited like every year when the tulips and daffodils start to show
their small green leaves. We know we will still have cold weather but they do
not seem to care.

Old Bob was in day care all week.
No way the Celexa has taken a hold yet, I do not see a difference
but there is a difference in the nurse's mind so thatis what counts.
"Oh Mrs K. he is so nice and calm"
Oh Mrs nurse I should reply someone gave you a placebo reasoning.

I am delighted when he goes, it gives me the time to take charge
once again of the house and move things where I want them.
Bobby takes up minimum of space, he is nesting in the smallest
nest in the house.

When Bob comes home he is all excited to see me and walks from room
to room and takes inventory of everything.
Looks like he forgets during the day what was here in the morning.

It has been a good week.
I am also happy that my Grandson Jimmy called from Madrid to wish
me a nice day. How nice of him.
Good kid.

Good day

I am on cloud nine.
I had a very good day.
Bob in day care, nurse said he behaved somewhat.
Whatever.
I keep telling myself that these people are trained (supposed to be)
to work with these kind of patients. Where is their patience?

New camera so I can try and see if eBay is going to pick up a bit
still have oodles of linens.
My camera was outdated and s l o w.

Here a photo of Carwen and Bijou

Valentine Day 1969

Valentine’s day 1969. I wore a pink dress with matching coat, purchased second hand from my dentist’s wife for 12.00.I can’t remember what he wore.
My two girls in Sunday dresses. We drove during a bad storm,trees falling and mud slides. Yet we all were laughing all the way from Brookdale to Santa Cruz.

We were to be wed. We had lived together for a year. Much to the chagrin of the ECW women. I had become a fallen woman but I was going to make it “right”. I did not give a darn.

Rain poured at the Unity church, a ten minute ceremony with Perry Como singing, my girls nervously giggling and I was a married woman.
The trip home on the winding road became a hazard, no one would go out in this kind of weather but those who wanted to make it legal.

Fourty years ago, the very best years of my life. Behind me that day, a sad childhood, an abusive 17 year old marriage, before me what was to be?
My darling adopted my girls, we had a son, we lived in different places,
as an artist painter can paint wherever he wants.

We were always honeymooners. We always walked holding hands. Fell asleep holding hands. Always together glued by the desire to not let anyone or anything come between us.

The glue did not hold as Alzheimer’s came and divides us. He does not
know about that day 40 years ago, does not know who these gorgeous women are who call him “Daddy”. This year however I will celebrate by myself and know I had the best and no one can steal this.
I will fall asleep holding his hand and I will pray that I have what it takes to keep giving him the care he deserves and needs.
He is my Valentine.

End of Freedom

OK OK OK
I had it good for a few days.
I was floating. I worked hard during the free hours.
Made sure something nice was waiting for him when he
returned from Day Care.
Last Friday, a repeat performance.
I was warned by way of telephone that he was on his way home.
He had been a bad boy.
He had been knocking at the door and said that he wanted a bus to
Santa Cruz.
Make sense to me. He has asked the same here many times.
I just tell him maybe tomorrow there will be a bus.
Five minutes later he will forget it.
BUT it is different in the day care.
They are afraid he might turn violent.
Upset the other people or hurt them.
Youhave to understand Mrs K. we are afraid for our other patients
he can return and we hope he returns when he is more calm.
At that point I was in no mood to mince words.
I asked point blank: So you want sedated clients, so there would not be
a lot of work?
OH NO NO NO was the quick answer but he must be calmer to mix well
with the group.
So there you have it.
The VA sent Celesta, I am not sure if that will make him sufficiently
calmer for the day care but I have given up.
I was able to give him care for 11 years now and so I will continue to
do so.
Will I be stressed? Of course I will.
Is he difficult? No
Does he work on my nerves? Yes.
You see it is hard when someone is following you every where in the house.
When someone looks into the garbage every five minutes.
When someone drinks 1 ounce of a drink throws it out, opens the refrigerator
and fills another glass only to repeat the whole matter again.
One minute I can go upstairs and clean up his studio the next
he starts screaming that I am upsetting his desk so he can't paint.
He has not painted in 10 years give or take a few.

Every time son goes out the door he locks the door behind him.
Every hour on the hour if not more he checks the mail and
we have to scram to get it or it goes somewhere in an invisible world.

Would I like for him to go back to day care? Yes.
Do I want him sedated all day? No.
Then I can do it here too.

Shoot me if I ever start to forget anything important.
Just give me a whole bag of pills.
I do not want EVER to be such a burden to my kids.
Not ever.
The real husband would just die if he knew what he is doing.
He would be so upset.
There are moments that I can't help it and let the tears flow
he thinks that is funny. No comprehension about sad or happy.
I can get so angry but then why do that?
He does not know what he is doing.
They keep saying in the books (written for idiots) that
it is the Alzheimer's speaking not the person.
Well, hello!, you do not think that I know that?
I have become and expert on the subject,

I better go as he is trying to figure out where to sit close to me.
I am just venting.
Just venting.

SUSHI time

BIG deal tonight. One of my friends where I used to work and I we are going to whoop it up and go for Sushi. She is American/Japanese so she loves it as much as I do.

I am kind of happy to get out this evening.
I will not be gone long but Bobby will keep an eye on old dad.

Nice day today.

Crocus are peaking out of the fall's leaves. will they get frozen again?
No doubt they will but it is a nice sign. Spring is not that far away.

HE IS GOING TO WORK

HE IS GOING TO WORK

He got up early, looked around with confusing old eyes.
I knew in an instant that he was concerned.
Something was bothering him and he did n’t have a clue what it was.

I had told him last night that today was going to be a day in the
“fun house” (read: day care). That is where you go to listen to
music, make friends, eat lunch and have fun.
He had growled like an old bulldog.
Fell asleep and now woke up to trying to remember.

I have tried all sorts of devious and obvious scenarios with
the introduction that a bus will come and you go for a ride
to day care.

He is not happy about this.
Mind you he returns beaming and laughing and waving at
the other stiff little soldiers in the bus. They do not know
anything about this waving man and yet they too talked to him
minutes ago.

The Alzheimer/dementia world is a tricky one.
We can’t follow a pattern. It does not exist, what one does all the time
the other never had that experience. There are similarities, of course,
but the moods are different for every one.

This morning I have decided on yet another lie.
I sit next to him at the kitchen table, he is counting the tiles and
caressing the blue birds in the patterns.
I try and get his attention. The eyes come in focus towards my face
he has no glimmer of recognition this morning.
I tell him that soon the bus will come.
Bus? What is that? He asks.
Well, the bus that takes you to WORK.

Silence. The eyes are racing around the room.
The brain is trying to get one word from this whole sentence.
I continue :”You see, honey, you probably do not remember
but you go to work every day and thanks to you I can pay the bills”
So soon the bus takes you to work.

Work? do what? he asks but he is interested.
Well, I explain, I am not sure I think you help with dishes or
setting the table like you do here.
I did get a phone call and they tell me that you are the best
worker ever.
Oh, Oh. A smile forms on the wrinkled face and he again
tries to focus on me and what I have to tell him.

I elaborate about how proud I am of him and how well he is
doing at work.

Beep, Beep! The bus is there.
Here you go, honey, do a good job like you always do.
I put on his coat and he looks at the bus in the driveway.
I march him to the driver who tells him to hurry up
it is cold outside.
He shakes hands with the driver and smiles.

I am doing breathing exercises , it worked, it helped,
he did not fight me on it today.

I go inside and check my TO DO list. I crumble it tight
and throw it to the puppy who can obliterate paper better than a shredder.
The hell with the list, I have the rest of my life to do the closets
and clean that garage.
I sit and write my blog for the day and I am happy.

4.30 PM. Beep Beep
the bus is there, I run to meet him , he ignores me, he waves at
the people left in the bus, one old lady waves back, the men sit
like stone statues and do not move.

He turns around and the eyes are dancing, he is having fun.
Turns around waves again at his audience and comes in to
greet the menagerie of dogs.
I say: “Did you have a good day, dear?”
“Oh, yes. I sure did”
“What did you do ? Did you dance? was there music today?”
“ I can’t remember anything”
“ You went to work, dear, thank you for helping me and going to work”
“I did? OK”

Let’s have some cookies , shall we?
He turns around and kisses me on the lips, OK , so he knows me
this moment.

It worked, perhaps if I do this tactic tomorrow he will go willingly
to the “fun house” or “work place”.

I noticed that he tries to talk more , he has been there for about 3 weeks.
Still struggles to leave but he is better in his speech.
He needs to be with people even if they do not understand him and
he does not understand what the heck they are talking about.
Sitting at my kitchen table all day is not healthy for him and lets face it not for me and now I have so much freedom I feel like a baby eagle who just started
to fly and knows there is a whole big sky out there.

We try again

Tuesday Jan 27
We will try again.
He got up this morning and asked where he had been sleeping.
In other words it is a confusing morning.

We all agreed that the reason he was so upset last Friday is
because the day care people had taken him out for ice cream.
He loved the ride.
When they got back he was furious and banged on the door.
They say that he swore and I have not heard that in years.
I am thinking that was an exageration on the part of staff.

VA is sending something similar to Lexapro.
I do not want him to be a zombie either.
Yesterday I told myself that I can do this.
By noon I was a wreck, I burned food and was agitated.
Not that he is that difficult, but he walks around all day
long, if I am up he follows me.

He goes outside every five minutes walks around the house
and comes back in reporting that all is well.
He is still thinking it ishis job to protect this house.
In and out, in and out,
then the refrigerator is open and closed , he is looking for drinks.
Prefers Cokes , I had taken him off the stuff and then second
thoughts, "why do that to him if he likes it? how much time
do we still have here anyway?"

The day care are willing to work with us, they said.
We told them no more day trips unless you bring him home.
He gets into a car and he thinks I am going home.

I need a good massage (never had one before) or a stiff drink
(that will get my psoriasis flaming up) or both.
I am picturing myself bythe ocean with a green kind of drink which must be sweet
and cold. I look out and count the pelicans flying by. I have nothing else to do and love it.
However, the smell of my fresh spaghetti sauce on the stove reminds me
that I am home and I better go and look at the doves outside.
Have a good day, Jeannot.
Have a good day , anyone, who reads these pages.

NO FREE LUNCHES IN LIFE

No sooner do I feel like I can breathe again, can have some hours to be by myself.
Plan A with the help of the VA and getting husband in a day care, which is owned by
the hospital , and .........bingo..........got a phone call.

Nurse said that he wanted to come home and was very agitated to the point
that his heart rate was too high.
Then the nurse suggested that we put him on Lexapro. Most of our clients are on
Lexapro she adds.
All well and good (I take that medication) but it takes a few weeks or more to
show that there is an edge off your emotions.
Nurse argues with that but then when daughter Sabrina tells her we
probably will keep him out then. Period.
Nurse sees that a client is about to leave so she cajoles and explains
that the others are at risk and they do not want that but they do
want him there. No question about it.
Talk to his DR she said.
By now we are Friday afternoon and it is 3 o clock
you think a VA doctor is available when they leave at 4. (for the week end)
So now what to do.

The VA doctor had given him very low dosage of valium
told me to give him 1/2 of the pill.
He was OUT. I do not want him to sit here OUT for 8 hours.
Reason we liked the day care is because they have activities till 3 pm
he needs some stimulation.
They make things, childish things I know, but they become children.

Do not know what the answer will be.
I am upset about it.
I am on the fence of what is best for him and for me.
The free hour I had for these short weeks were such a blessing.
I felt like a different person.
So on to a week end and trying to see what the next puzzle
will bring to resolve.

Inauguration day

Today is a great day for us in this household.
My husband became a Democrat in the womb.
He was not very political but when Nixon won we moved out of the country..............

He fell asleep through most of the inauguration.
Just sitting in his chair at the kitchen table and sleeping while history
is being made.

I wanted to shake him, I wanted to share this moment.
I wanted to celebrate with him.
I wanted to cry with him that we lived long enough to see
this. That this is the first step to perhaps an African/American
woman as a President one day for my grandsons to see.

I wanted to dance in the kitchen like we used to do and just
hold him and feel safe with the new era coming our way.

He opened his eyes and looked with a blank stare at the TV.
Had no idea what he was looking at. Did not remember the Capital building standing there in all its glory. Did not see the procession of Presidents still alive. Did not see the crowd of a million or two.

I looked at him and the empty eyes and I cried.
I asked him: Where is my husband? Where are you hiding him?
I am extremely sad today to know that he knows nothing anymore.

In my heart of hearts I just do not know how long I can continue
this journey without him, the way he used to be.

A red letter day for me.
Why? After being a caregiver for 10 years I am seeing the light at the end of the tunnel.

I am finally able to put my husband in a day care program which will benefit us both.
I will have 6 hours by myself and he will be entertained by live music programs, visiting pets,
craft projects and company.
He can tell again and again about his war days and his youth by the big water( read Pacific Ocean).

A bus picked him up this morning as I was managing to get a huge tension headache.
It's no less a drama then when you put your first born on a bus to kindergarten.
I thought he would balk but the driver was full of joy and he stepped right in.
I had told him that he would go and "help" which he loves to do.
He had answered with a growl. So I was not on steady legs.
But the moods with dementia/Alzheimer change every second at whatever
memory hits them at that moment.

He can go for 5 days a week. WOW.
A program that I did not know he would qualify for.
A big help came from a new social worker at the VA , she was the angel I had hoped for.
No way I could afford it on our social security.
Even so that has been helped again with the VA as a pension is available
and on Jan 1 st I did receive our first check.

I am absolutely in a cloud.
I tried very hard not to sit on a pity pot but 10 years is a long time
to watch someone you adore just go into another world.
Ten years is a long time on the changes of your inner self.
You do not notice it for quite awhile and then one day you tell
yourself that you no longer are the person you used to be.

Laughing comes in very small dosages, tears are forever ready at the
eyelid doors. Negative thought creep in faster than anything
that would uplift you.
You go down, not like the afflicted, but you go down to your own
personal misery.
Nothing will ever be the same, someone told me 9 years ago
and he was so right.
Nothing is the same anymore.

Now with respite , free time, perhaps the more jovial, happy,
positive thinker will emerge from the mud.
As I saw the bus leave I thought "now what do I do with the
rest of my life". The answer was : enjoy the quiet time,
rejoice for the help, be happy.
I actually went down on my knees and thanked the Universe.1/7/2009

Happy 2009 to all

Rhonda, the pretty one, and MOI the wisest one (maybe).
Yesterday Jan 3 at Biltmore Castle.

Happy New Year to all.
I had such a good day with the girls, grandsons Zack and Peter , visited the castle last day of decorations. Saw the Father Christmas figurines we were commissioned to do for them eons ago.
I lost it when I saw them as now Bob no longer knows about this.
He was so proud to have his and my work in the castle.

I am looking forward to a good change for both of us.
He will go to day care but has not been able to because of a cold.
We will try two days this week and full week next week.
Pick up and delivery has been arranged to.
I am somewhat lost as what to do first now that I am retired.
So much has been neglected in the house.
What to do first????

But I have learned this week thatif it does not get done today then there is still
the rest of my life. I am no longer going to sweat the small stuff ( remind me of that)
and I am going to enjoy whatever I can.
Bob will be better with company and people in different stages of dementia and Alzheimer.
Some are in his stage and they can talk WW2 and perhaps he can learn to dance.
He always had 4 feet when it came to dancing.

So 2008 is past, gone, forever outta here.
Pick up the pieces and look forward to a better year.

VA HELP

from my post in www.trusera.com

Not been well and unable to post for awhile but I do have great news.

I filed for the VA pension in May 2008.

Most vets do not know that there is a pension available if you have been in a war (any war) for 90 days. You did not have to be in a batttle either. Just in service during that time.

So I filed in May and December 18th I did receive the good news and my husband can have a pension which will help me a great deal. It's not a fortune to be sure but it is a great help in the days that we are facing now.

The introduction to a new social service person at the VA then also helped me with more , my husband can now go to a day care for 5 days a week. I just could not afford that but I surely need the rest. We will try it in the next couple of weeks and see how he likes it and how it will work out for us all.

I am hoping and praying that this will be the best for him and for me. At the Day care they have Pet days, music days, craqfts etc...things he could still be interested in. Here at home he sits and falls asleep , no longer interested in reading nor TV , the most he is interested in is drying the dishes. So I am hoping that

the day care will be to his liking.

Getting help is sometimes difficult if you are dealing with people who do not know their jobs. That was our case when I asked for help previously. I am in 7th heaven now.

A real good 2009 beginning.

Retirement day with excitement

I don’t know how to make an entrance but I sure know how to exit.
Yesterday, Dec 28th, last day at work.
I am retiring....again.
I was mixed with emotions , love the job, no energy, need to care for
the man at home.

Went down the hall to get my paperwork and my throat decided to
close. I mean “closed” for further operations.
I turned around in panic saw my manager and motioned that
I was chocking. Not chocking on food, mind you, just no air, period,no air.
Mgr tried the heimlich but no results, a client started to bang on my back, no results.
I thought I could feel my head burn and figured I was beat red and
someone said : She is turning blue. Get the medics.
I had the presence of mind to think that here I was in the middle of
the store and I was going to die on my retirement day.
No fair, I thought, but I was not even alarmed at that.

Then a very slight peep came out from the throat and I started in
earnest to try and cough and cough. I knew that if I could cough then
some air was coming in and I would be fine.
In a flash I remembered having this about 8 years ago and
the medics came with oxigen and took me to the hospital.
Same feeling.
This time the medics did not come that fast and I was able to do
some breathing and very slowly could talk again.
I have no idea who was all there but a small group had gathered
around me and a chair had been put under me.
I felt I would faint but I never did.
When the help came ,I explained to them what had happened and
was told that one of their own had this. It is a spasm in the throat
and shuts out all the air.
I refused the hospital trip as I know that is a good $500 I did not
have.
Daughter was on the way to get me and was rather non-chalant
when every one in the store was agitated. Her reply was:
she is OK now and I did not see her blue!

I had not finished my work. The deposits were not done.
I felt horrible but mgr told me to just relax and go home.
That is not my style. I should leave on my last day with
work undone?
I went to lunch came back and finished what I had started.

They knew at work that I had been dependable for 3 1/2 years I was not going to change it now. But it sure worked up a lot
of applause. I just know how to make an exit.

A merry Christmas to all:

My best Christmas ever.

Often people ask about your best Christmas memory and this is mine.
Could not ever be duplicated no matter how many Christmases I will live to see.

Christmas Eve 1944
Gent, Belgium

I am 12, mother is 34. She is recovering from a major surgery and a husband who has left her for another woman just a few months ago.

We are finally liberated , we in the north welcomed the allies in September.
In the Southern part, in the gorgeous mountains, hills and forest another battle is in full swing. It becomes to be known as the Battle of the Bulge.
Our gorgeous Ardennes are being mutilated. Worse hundreds of lives if not thousands on all sides of this horrific war are falling in the fresh wet snow.

Mom and I are not aware of this battle, we hear very little of what is going on outside our newly freed Provinces.
We are alone in our very cold house, windows broken covered with lumber,
water rats moved in what used to be our bedrooms.
The roof is shattered in many places from the bombing and air raids.
The wood/coal stove only produces so much heat as we huddle around it
covered in blankets.

Mother is lonely; she is sad, alone for this Christmas for the first time since
her marriages of 16 years. She is still feeling ill. War had not made her
skinny, she is a full fleshed Flemish woman like you see in Rubens renditions.
She lived on potatoes and onion gravy; we are yet to see some meat coming
in our tables but for the grace of the few Americans who are helping us.

So this brave lady who was together with her little family in grave danger all
through the war is now struggling with a new reality. She had been the radio
communicator with the Brits in her bedroom. She was fluent in the language,
thanks to a good education and was my father’s right hand in the underground fight
of what we called “the white brigade”.
She had welcomed the soldiers who parachuted in the night and gave them
clothing and food for the next stop. She had sent her only child to school when
she was wondering if a new air raid would come today, eliminating the factory
and the village. She never knew what the day would bring.

That first Christmas eve when all around us was changed and yet nothing
had changed at all. We were still seeing planes come and go over our heads and
we still saw the air battles, we did not know for sure how far the Germans were and would
they return? In our hearts however we felt that all was going to be fine.
We had hope for the first time in what seemed eternity.
With this in mind Mother decided we should spent Christmas Eve at her sister’s house in town. That was 9 km away (almost 6 miles).
The excitement got a hold of both of us and with enormous energy and good cheer we left the old stove to warm up the rats and started our journey along the
cold waters of the Canal of Terneuzen.

We had walked this foot path for years, I think we knew where there would be a dip in the dirt and mud under the fresh snow, we knew where a large stone would stick out and how to avoid falling in that narrow strip next to the canal.
Next to it was the bicycle path but that worse in need of filling the larger holes.
Even in the dark night we knew our way.
I can still see the cold fog over the water, piercing cold in our bones.
My shoes too tight. I was always growing too fast and my feet were the
first to show the signs.

We started to sing , she could sing , I could barely keep a tune.
But we sang with our vocal chords in full orchestra mode and in the silence
we go from “the Yankees are coming” to “Belle nuit de Noel” and “Petit Papa Noel “.

Along the canal there was only industry, we lived in a lonely little house about 100 yards from an electrical plant. Most plants at this point where not working, almost all had been bombed. The silence along the water was eerie, as the little bit of snow would fall intermittently. Now and then an army truck would drive by on the road and soldiers would yell “Merry Christmas”, some had other messages too.
First time we both heard F word, mother honestly had never heard that one at the
convent where she had studied. She was very puzzled, what did it all mean?
Very few Belgians had cars at that point, perhaps a few doctors.
Only army was on the road, day in and day out.
We were used to that but these camouflaged tanks were a much loved sight.

By the time we reached the blown up bridge of Meulestede we crossed the canal on a makeshift bridge and started to walk between the streets lined with houses.
Here and there one could see lights and the cozy interior of people celebrating.
Mother stopped and told me to look and listen with my heart at the sights and sounds.
“You know Jeannot, she whispered, this is what is called “freedom”.
You see we are finally allowed on the street at night, we are finally allowed to have lights coming out from the houses, that means this is our first Christmas
in many years of total freedom. “
“Freedom means we can now just walk to Tante while watching the stars and
singing, we can peak in the windows and see people with bright lights shining on their faces. Jeannot, never forget this moment”.

I did n’t, I can still see it, I can still smell it, I can feel it in my heart.


Mother was disappointed that we could not get to a midnight mass on our way
but all the churches were still closed. Perhaps no one had wanted to come out
or perhaps the new army had told them to cool it for awhile, I do not know but we passed several churches and no service.

I started to slow down and she found a way of making me go a little faster.
Where she saw light in the houses she rang the doorbell and started to run away.
I had no choice but to run after her and hide around the next corner.
That way we got to my Tante in a jiffy.



I can see the gate at my Tantes house and lights turning on for the
night visitors. No phone to tell them we were coming but the welcome
was heartwarming.

My cousins came out of bed to hug us and I could crawl in bed next to them
tell them about my adventure of the night. No rats here, no damage to their house, they were blessed. I was in heaven close to giggling bodies and it is Christmas.

I do not remember one present given that Christmas, I doubt that we had any
at all but I am still feeling the joy of that night.
The songs come back to me. Belle Nuit.....Petit enfant Jesus.....
Au clair de la lune mon ami Pierot. ................................

Merry Christmas Mom, Tante, wherever you are.

SOap box, always a soap box to stand on

In my previous blog I mentioned going to the Biltmore to see the gingerbread houses.
It was not to be, I got into a bit of a problem with food poisoning.
I am thinking since the going out is limited these days for a lot of people that perhaps the food is not as fresh as we would like.

So now I am back on my soap box.

It occurred to me this week (once again) how hard it is to comprehend mental illness.
How little actual help is around when you do not have the money for a psychiatrist by the hour or a counselor for that matter.
Clinics are over run with clients and paper work.
How many people have insurance which covers this.
I do hope that Pres. Obama will be able to bring some changes into that health picture.

If we had cancer or a heart surgery you would see everyone at your door trying to help.
Seeing how you are doing. How you are progressing.
This does not happen with mental health.
In many instances you are ALONE. Alone with your pain, alone with your depression, alone with perhaps some meds prescribed by a general doctor who knows nothing about mental health except tp give out the Effexor, Lexapro, Ritulin and the likes .
My son , for instances, can't get help at the moment.
He has is on disability, thanks for that, we had to get a lawyer for him to qualify.
If he had not a home to be in where would he have landed?
Possibly on the street where a lot of these afflicted are today.

My son has severe panic disorder which turned into agoraphobia.
He has been locked into the house for 3 years now.
Does one think for one moment that this is a pleasant experience?
He can walk about 1 block with his dogs and quickly returns.
The safety is in these walls but nowhere else.
He has a car, he pays the insurance , the taxes etc....on the vehicle and he can't use it.
The hope is always there for one day just to drive away.

Problem with the people around him and know him is that he is considered by many to be lazy. I have to admit on bad days I am thinking that too. Until I examine the whole picture.
He is 35, a widower who lost his wife 6 months ago. He is in mourning for a great partner.
He is afraid to go out of the house, he is very lonely, he is in a depression, his father does not know him anymore and calls him "that man".
Would anyone want to be in his shoes?

There are days that he hardly speaks and other days that he is a fountain of information.
He is extremely bright , has been tested twice border genius. He also has ADHD like his father has.

It is easy to look at the physical being. A young,tall, nice looking healthy (?) man.
Why is he not doing this and that, why ? People ask this of him but they do not see
the agony of anxiety which is debilitating.
They can't see the pain he is in , no bandage is in view, no tubes coming out of his nose, no hair falling out from chemo. Just invisible pain which takes away every day from a young life not being able to live to the fullest.
Would you think that is being lazy?

I have to rethink that every once in awhile , in the meantime I search for a healer who does is able to help and not a quack as we have seen one already.
We have to find someone who comes to the home and listens to him.
Most physicians I called and he called do not want to have home visits, they want to meet either at a restaurant or library. Hello? Are you listening? He has agoraphobia, if he could make it to the library he would not need you!!!!

In the meantime he is a great help just by being in my home while my husband deteriorates with Alzheimer. He is here 24/7 and gives me time to go out and play with his sisters.
He gives me the time to have a lunch outside.
I am grateful for him being here BUT i truly hope he can be healed very soon, even if he would have to leave here and go back to school or work , I would jump through hoops.

Posted this on www.trusera, the site for all varieties of illnesses , breast cancer, autism, lyme disease, Alzheimer, dementia, arthritis and so on. Check out the site it is well worth it if you need answers from people with the experience.

Well, I had a good week all things considered.

I was fairly calm and composed so I did not argue with husband about the unable to see people I had to chase out of the house, the bed arrangements which he does not like because I am a stranger,the food he gives to the dogs and should n't......etc...etc...

I was a good girl and stayed calmer than usual. I had more support this week and was out more so I contribute that composure to my "time out".

Saturday daughter Rhonda got me to the big city of Asheville and we checked out shops and new restaurants. I managed to laugh quite a bit. Tuesday I had daughter Sabrina to take me shopping for groceries and goodies while we had a nice dinner with sushi. That girl can make anyone smile, she has a gift.

I am taking, stealing actually, all her energy and fill upl ike I am a big SUV and just put her rainbows in every little corner of my being. So I was truly in a very good mood on Wednesday and called her to tell her that she should come over every other day so I can "recharge". She did not see it that way, most of all her husband and her son did not see it that way.

OH well, c'est la vie.

In any case, I am so lucky that I do have people who will come around and make me smile if not giggle out loud. Sometimes even a belly laugh. Give me the laugh lines any time, they are nicer than the worry lines in my forehead.

If all goes well I may even be able to see the ginger bread houses at the Biltmore, a yearly contest of gigantic proportions with cooks from all over the USA competing.

How much fun will that be?

Who makes it possible for me to have that time out? My son who now lives with me and puts up with a lot from his father who calls him " that man". My son is hurting because he adores his father and he is getting truly a very bad treatment from him right now.

From my entry in www.trusera.com
the site which deals with health questions.

Thanksgiving a new tradition this year as I mentioned before I had given up on doing the cooking and gave away my dining room table. Fate had other ideas as son moved home and has agorophobia so back to the drawing board and family coming together in my house.

We managed very well, the Limoges dishes sat in the cupboard untouched and happy that this year they would not be knicked. Some of the kids even did not use glasses and drank from the cans. We all picked a seat in the kitchen or a tray and a lawn chair and it looked more like a summer picnic than my usual fancy decorated table. For some reason it did not bother me at all. All I wanted in the house was some laughter and friendly noises.

I was delighted with the whole set up and the girls did the clean up. By 9 pm you could not tell that we had a small crowd of 9 all with full bellies. My menu had been requested as their old Belgian favorite "carbonade Flamande and Fries" , I call them Belgian fries.We did invent them you know.

When I do this mixture I use up 15 lbs of Fries , fry them twice. So daughter surprised me and came in with 16 lbs all peeled and ready cut. The rest was a piece of cake.

The same scenario will have to be for Christmas eve but I think I can do an encore and we will have the same fun. I can't possibly go away and leave my son alone in the house , as long as he is not able to go out , we will be with him.

Old dad was confused, of course, he is confused when no one shows up and he tells me to get rid of the people, so there was nothing new on that night but real people.