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.

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