Monday, April 27, 2009

Terry A.

If you read this, my friend, thank you for calling and remembering Bob.
He always thought you were the best.
Of course he would, one Gemini has to love another Gemini.
Decades you have known each other, I am truly sorry that he does
not remember you but I have to think that at some level he must know
that he could always count on your friendship.
Love to Lynn.

7 TH Stage ????

I am thinking that we are truly in stage 7 now. The last stage.
Old Bob just does not feel like eating much of anything, not even cookies.
I give him the special drinks and figure that at least he has 250 calories per.
He is shrinking so fast, becoming so thin and not sure on his feet.

The last 2 months the weight loss was 7 lbs m so he is down to 135 with his
clothing and shoes on.
I am worried.
Whatever I fix unless I stand by him and even then half goes to the dogs.
We now have an overweight Corgy and the old lady "courage" looks like
she is pregnant and she is ancient.
He feeds them all the time.

I am going to fetch some very fattening ice cream.

He also suffers a great deal from allergies.
His skin around the eyes looks like leather.
This has been going on every spring for too many years.
The only meds which help a little bit is Claritin.
He is also coughing a lot from the allergies.

I hate to see the fading so quickly.
Not a good sign.
7th stage can be around 2 years.
I am afraid that he will not make it for 2 years and then there are days that
I question why he is still here.
This is not what I would call a great "golden age".
Last night I thought he truly remembered me.
As I undressed him for bed and tucked him in he said:
"I love you!" and "thank you".
Now we know that at the day care and nursing homes they all find new
boy friends and girl friends (it changes every day) so I am hoping
I was not the girl friend of the day but the wife of 40 years.
It means so much to me that he would remember just a few seconds
of our great life together.

Monday, April 20, 2009

great week behind us

First of all, Joy, I can’t find your email, if you read this, you are welcome at my house anytime. You should know this. Sorry I goofed on this.Add Image

I had the most fantastic week.
Why? I just do not know except that I was on a high..
The kids put up the gazebo, Bobby cut the lawn and even so the flowers are not all there yet
this is absolutely heaven.
I keep looking outside and even sat a few hours in the gazebo just relaxing.
That part is hard to do as my mind tells me of all that is waiting inside to do but
I got to get over that and learn to relax.

Bob was in day care all week and seemed to be in a very good mood, he even let me wash him and cut his hair. That is a biggy.

Saw that we are about to get a couple of checks in May from the new Obama program.
It will be welcomed.

Bijou is listening more and more and trying to please more and more.

The “pond” has been totally cleaned from top to bottom and the lonely “Mr Fish” seemed to
enjoy it.
The new BTE hearing aid lets me hear the waterfall!!!!Hooray!

I started to list again on eBay. There is a small interest coming back on that site and I love to get rid of all that extra stuff. The $$$$ help too. Most of all I love it. The new camera is doing great photos.

I am easy to please but this week just was special because it is going to be planting day and tomorrow I can go to Lowes with Bobby’s birthday gift and get me some annuals for the window planters.

Few accidents this week as far as the bed is concerned so that is a help too.
However, every year old Bob gets an allergy reaction with swollen eyes and swollen face.
Claretin helps a bit, we have tried shots and other meds over the years but it is a spring attack.
Hope it does not get so bad that they will refuse him at the day care.
Sometimes he looks like the Beast in beauty and the Beast.
One day we walked into the doctors office and the good old doc said:
“Bob , you should have come in with a paper sack over your face”
Poor guy, he itches too.

Lets hope my terrific mood lasts through this week, a Lexapro high? is it?
I’ll take whatever I can get in sunshine days.

Tuesday, April 7, 2009

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.

Monday, April 6, 2009

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 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. nursing home.

Saturday, April 4, 2009


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, April 2, 2009


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.