Yesterday is gone.............

Thank Goodness, yesterday was a grouchy day.
I could not get a hold of anything positive.
I felt like the whole world was one ball of dark clouds.
To top it off we went from 70 degrees to 32 within hours
and we had snow.

I love the garden, I love to see the birth of my perennials
and bingo then comes this and it is April.
We are not in tune with mother nature this year.

So if you are reading yesterday's lament, forget it.
Bad day that is all it was.

Photo here from Bob in day care, he plays with dominoes
but they say he has no idea of the game.
At least he is busy.

when is enough too much

Yesterday, I felt that if I could not leave the house I would absolutely explode.
Daughter had promised me a day at Biltmore and I was ready, new camera in hand.
Old Bob had been very cranky the day before as across from us they had a party.
Cars had lined the otherwise quiet street and this upset him.

He likes to think of himself as owning the whole street.
We have been here 33 years so that is home for sure even if he thinks
we are Santa Cruz Ca.

We tried to lock the doors and keep him in but he tried to open them with
scissors and nail clippers, so we had to give in and watch him, every second.
It was a long evening. He would argue with us in the middle of the street that
the cars had to go, would try handles and fight me off when I tried to get
him home.

I was exhausted, young Bob was trembling with rage. There comes a point
that you just can't handle your own emotions anymore. I do not care what
people will say but unless you are there 24/7 you do not know, you just do not
know. So please, please, do not judge care givers as harsh, hard, uncaring people.
Every caregiver I know has hit bottom more than once.
Murder followed by suicide is not uncommon among Als/dementia patient and
caregiver. Some spouses just can't handle it anymore at their advanced
age. It did happen in our town and it is a small town.

By the time I had him ready for bed he was exhausted and so was I.
He continued to complain about "his rights". The sentences often no longer make
sense and you see him search for the words and perhaps uses the wrong
one. It is a guessing game. More frustration on both our ends.

So by Sunday morning I thought I would worry about him all day and I
better take him with us to Biltmore. I was afraid that young Bob was too emotional
to handle him all day. I was also afraid that I did not want him to tag along.

I woke him up and said we were going to the big castle, blank stare.
We are going in the car with Rhonda- blank stare
You will have to get up now and I will dress you........
NO NO NO, I want to sleep, I am tired.
The covers went over the head and back to sleep he went.

I left, mixed emotions, good alibi , he did not want to go, tra la la...
BUT what will he do if Bobby is still asleep?
Will he let my dog out? OMG, I will kill him if he hurts my dog.
Why did I not force him to come.
He does look very tired. Maybe after last night he will sleep all
morning. Maybe I am off the hook.
OMG let me out of here.
Let me breathe, let me be free for a few hours.
Let me go..........without guilt..................how do I do that?

As we strolled on the grounds at the castle I tried very hard to
play mind games, to forget the white little cottage I just left.
I pretended that the Vanderbilts were walking in front of me
long gowns and parasol in hand, strolling under the wisteria archways.
Perhaps a maid was there too with a pram, how lovely
they all looked and how relaxed.
The brain returned to "what is going on at home?" I should be home.
Yes, I should be home.

Can I let go completely of what lives in my heart and my soul.
No, it is impossible.
10 years ago people said that I looked at least 10 years younger.
Today I look 10 years older.
The pain, the worry, the daily loss of your best friend, it scars you,
I am sure that my actual heart is showing scars, it has to.

When we reached home, all was fairly good. Son was tired, had
several run ins with father. Old Bob had decided that he should move
the dead leaves from garden to the middle of the street.
We are constantly concerned as he is deaf that he will not hear
a car coming.
Then the old man decided to go and dig in the police man's garden.
Bobby saw him take out a dandelion but since we are not sure
if he knows the difference between the dandelion and the tulip.............
Again a battle between them as he thinks that is his yard too.

Recap for the week and I think I earned his social security for sure,
changed the bed 3 times after "accidents".
Diapers only work if the equipment is INSIDE.
He wants everything zippered up, he ruined 2 jackets as he could
no longer do the zipper.
Broke my umbrella, can't figure out how to close it so you force it.
He already broke son's umbrella.
Forced the cup inside the dish rack so that the handle broke.
It all has to fit and he does not understand simple mechanics.
Could not put a shaver into a plug, I saw it in time before that was
being forced.
He could not find a light switch in the bedroom so he tore at
the antique embroidered shawl I have over the four poster.
This is just a few things that are the tip of the iceberg which come to mind.
I just have to write them down for my own sanity.
I have to share my thoughts with someone out there who is feeling
the same. Hence the blog for A/dementia.
Survival of any kind is still survival and we all need to be able to do that.

Putting him in a home has come up several times.
The kids hate to see their mother in a that state of mind.
One said : I already lost my father, I do not want to loose my mother too.
Nursing homes? Private around here are between 5 and 8000. A MONTH.
The VA possibility is slim, BUT if he goes in anyplace at all, then they take
his social security , plus the VA pension becomes a minimum.
That would leave me with about 500 a month.
So....no nursing home.

FLOWER MEMORIES

I want to cheer up today, it has been a bad week. Rain, gloomy and still not well.
The garden always gives me a lift but I can't plant yet as we still have frosty nights.

As I watch the PINK LIlly of the Valley come up I am remembering where I got them.
I was called in for a sale. The gentleman was dying from lung cancer and knew his days
where numbered.

I walked in his garden and saw the pink Lilly of the valley, I had tons of white ones but not pinks ones. I asked him for some pips. His answer always resonate in my head while I see them
come up. He said :"You know, Jeannot, where I am going I will not need them. Take the whole garden if you like and keep them growing."
I did and I thank him every year. It is becoming a memory garden.
A rose this person gave me. Mums from so and so, but what was funny
was that son while in his senior year in High School was giving me some grief.
He and I were on a collision course. Mothers day came and he gave me
a bleeding heart plant. I said :How appropriate.
The darn thing returned year after year and when it did die , he and I had just become best friends again.

OK so am I cheered up? It is getting better,
I am out of the house tomorrow.
Rhonda is taking me for a late birthday breakfast at the Inn on the grounds of
the Biltmore Castle where she works.
The Inn is a ***** affair but I am just as happy to go to Denny's, not my Rhonda,
she likes things fancy.
After that we will go all over the grounds and I will make tons of photos.
Have a new camera.
Their garden , thousands of tulips, are now in full bloom.
It promises to be a glorious day.
We may rent one of these machines that walk for you, like the mailman.
Just meander about this fabulous estate.
The last castle privately owned in the USA.

Thursday

Rainy day again. Lots of fog, depressing yet we have to say thank you to mother nature otherwise I will not be able to water my garden again. Last year was a bummer , if we did water there was a $500 fine.

Nowadays I live for the garden.

Bob was sleeping the other night and I just could not get with the program.
Trying so hard to keep the eyes closed and grabbing at "good thoughts" which eluded me.
I looked at his small face and deep lines while he made little puffing sounds.
Could this be my man? Have we come this far?

I remember when we first met I was 36 and he was 42.
Both of us sort of drama queens, we thought we would never be old
together. He was never sick, I had been very ill with arthritis bouts
which were debilitating. The medics said I would be in a wheel chair
by 50.
Here we are 40 plus years later and I am the strong one.
I am the caregiver. His karma, he was so kind and gentle with me
when I could hardly walk. He took care of my girls when I was
unable to comb their hair. Could not pour coffee.
He stuck by me. He could have been running the other way
back to San Francisco, no he just gave it his all to care for me.

After I ran this around my mind somehow I know I was smiling
at his old face and thanked him. Fell asleep hoping that tomorrow
I would remember all this and not be grouchy.

Sun after the storm

A friend of old Bob wrote me an email.
He misses his old pal, they went to the Chouinard ARt Institute together in the 1950's.
A half a century ago.
Nice to hear what memories he has of that young handsome man.

I had changed my office so that I can see Bob sitting at the kitchen table and
keep an eye on him. This morning he looks like Florence, his mom, with a Belgian baseball cap.
He checks out the dogs, they are always close by, he smiles at Carwen, sometimes he is not that gentle. Today is haircut day, then pedicure, then wash him. I just do not enjoy this
as with everything I do to his person he hates.
We will have many arguments today and I so want peace.
It has to be done.

The storm of yesterday has gone to the sea and the blue sky is
a welcome sign but then it also means I have to watch him in
the garden. He cuts and cuts and cuts.
No idea why he cuts the fresh blossoms and little green shoots of
spring but cut he does.
My gardening feelings are getting very upset.
Hard to ignore.
Yesterday he brought in the dead daffodils and put them in water.
Why does he know flowers need to be in water and why does he
not know these have finished their job.
The mind................works in mysterious ways.

Last night we watched a movie with young Bob, I can't even remember the
title but I had a good laugh for a couple of hours.
Watched old Bob , he reacted like my teen age grandson.
Giggled when the f word was said and opened his eyes very big
when the girl showed her boobs.
Still know something about that equipment.

I splurged and ordered a Gazebo which will be in the back yard,
it comes with a mosquito tent so I hope to spend some time in there
with him when the warm days come.

I am getting better so that is my good news for today.
Still coughing but much better.
This was a very nasty bug.
Young Bob has it but fortunately old Bob does not.

Going to enjoy our Sunday with sunshine.

March 28 2009

Raining again and storms expected but we need the rain so , shut up, Jeannot, stop whining.

So I am on day 18 of being ill and enough already. Went to doc yesterday, she said that it is a mixture of acute bronchitis and asthma.
What is "cute" about this?
I am running around exhausted all the time, barely fix dinners and dishes and back
in the chair and fall asleep, looks like I am on old lady. Refuse to accept that.

Old Bob was on his dying bed , so he made it appear, on Thursday .
He was shaking, said the word "Sick" several times and I started to
have a knot in my stomach. I told him to stay in bed and go to sleep.
No bus today! He smiled, little con artist that he is.

He comes out all dressed at 11 o clock and smiling like a Cheshire cat.
"How are you?" I asked.
he looks at me surprised, I am fine.
You hurt? No!
Are you sick? No.
End of story.
He had me again, he just did not feel like going.
You would think that a 3 year old is not aware of tricks like that
but he is and he is also 2 or 3 years old now.
Next time I will tell him the grandchildren are coming over.

While I sat coughing , he was smiling, he has no idea that I am sick
and hurting. He thinks it is funny.
I am thinking I would like to punch him in the wherever.
I am not a violent person but about now I am starting to think
that I am changing.
He fell asleep in the chair before I could reach him.
Lucky Bob, or was he really asleep?

C'est la vie with dementia or Alzheimer whatever you want to call it.

WALKING IN SPRING TIME

I am on day 9 with whatever bug in my system which is inno hurry to leave.
Thought today was going to be the day to jump for joy with energy and
no coughing. Instead I took naps all day long.

The only happening which made me smile was while walking Bijou
discovering this gorgeous tree on our way.

Spring is here and hope.....well there is hope to jump hoops tomorrow.....

Alana, this one is for you!!!!

do you think these two angels would do harm to anyone? Besides the dogs!!

Grandpa who eats grandchildren for breakfast

Spring around the corner

My walk this morning brought joy as I saw that after the rains we had blooms.
Pear, plums, so many of the decorative trees in bloom. Forsythia and bulbs popping up everywhere.

It has been a rough ride week.
Accepted some bug into my life and have a hard time throwing it off.
First I sounded like a group of wild dogs and now I am down to sounding like a seal.
The very potent syrup the doc gave me does not even help. I wake up and have
coughing fits which last forever.
Time for me to get well, I need to do so much.

Add to this that I had a birthday on Sunday.
I do not mess with them anymore.
I just feel that "OK I am still here" so keep on trucking.

Oscar was here from Texas so the troops came to say hello to him.
Equal that to a house with 4 grandsons.
Old Bob was not amused. He sat like a nasty cop in his chair and watched
everything the boys did. He told them not to steal his paintings and
gave young Bob the finger every time he looked at him.
It was unpleasant.
I was in bed most of the day but reports came to me plus the fact
that the old man did not want to come to bed for fear of what the young ones would do.

He spent the day mixing coke with sugar and milk and making the microwave look like an a war zone. He not only did it once but several times, he is sneaky. I watch him and then
go around in another room and he tries his drinking experiments.
Signs are over the sugar pot :"DO NOT MIX WITH COKE"
they are being ignored.

I am slowly getting better but in no mood to hassle with people who do not know
what I am saying. So OK, I am a bad girl today, big deal.
I'll be better some other day.

Here is a photo of the three grandkids

march snow

Snow in the mountains, AGAIN

When my daffodils crop up and the crocus are already vanished in the lawn then I
declare it SPRING, I am not very aware of the calendar which tells me that it
ain't necessarily so.

So this is the second Sunday I was promised a day at Biltmore Castle and the
second one with bad weather. Come on,

Got up to rain and now they tell me it will snow this afternoon and tomorrow.
Three to Six inches. Well, I have friends in Chicago who email me and tell me
to just laugh it all away. They have had a lot more to deal with.
OK so they decided to live in Chicago. I live in the South.

The weather is about all I moan about these days.
Old B is doing fine and the dog training classes for young Bijou have been
worth the money.
The other day I was in a hurry for his walk and started to dash out the door
but Bijou sat there waiting for his command when I was already half down my
steps. He looked at me wondering what was wrong with ME.

Running out of the house was my main priority in his training.
I do not want to find him on the side of the road.
He is picking up fast regardless of what I learned.

Trainer said that the Corgy is the smartest dog around.
They were bred to work and it is still in them.
They wait for orders.
Maltese , said the charming young man as he put a dagger in my heart,
Maltese are to keep combing and to sit on laps.
They feel they are it and do not take to orders without a fight.

Carwen, the Corgy was listening to all this and looked at me
as if she was trying to say: I told you , I am smart but you keep
giving that white fur ball the goodies just because he sits for a second.

Well, I am trying not to give up and continue all the training I paid
for and so far it is working, even my patience has not run out yet.
I want an obedient dog, is that too much to ask? even from a Maltese.

My friend Jeannette has been in hospital twice in a month.
SHe is 93, had 3 surgeries and is back to "normal" and in the
nursing home. She does not want to go just yet and she is holding on,
the will of a Taurus which she is.

Well, lets get the boots out.
Old Bob will be by the window as he forgets what snow is and he
will be smiling about the magic of it all.
He is like a 2 year old when it comes to snow.

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.