Goodbye to my best friend

Monday October 13 2008

I lost my best friend.
A four legged little charmer named Toto.
He was a pistol and for some reason decided on
an argument with a larger dog.
He did not win.

For four years he had been the the one
continued sunshine in my life.
The only continued sunshine.

He would go crazy when he saw me coming.
He looked sad when I had to leave for work.
He looked sadly at his Dad who sometimes would push him away.

He would sit on my lap by the computer, his head
resting on my arm and it would bobble with every letter I typed,
up and down he went and yet it did not bother him.
When I sat on the couch he would wrap himself around my neck,
he was my white fur piece.
He wanted to sleep in his crate in the night and be left alone.
So by 9 he would stand by the door looking at me , as if to say:
Come on time to sleep!.

In the morning we had our walk before work and he
had his designated areas but when it rained he decided
he would do neither.
So early on I started to spoil him and take him under the umbrella
to the car port next door so there he felt it did not rain and
he was ok.
My son in law thought this to be extremely funny.
When he was little I had to take him up the steps.

We bought him on the voting day in November 2004
we hoped for Kerry so we named him that.
The next day when we knew Kerry did not make it
old Bob decided to name him Toto from the movie.

I have not changed my clothing in 3 days, have left the
stove on when it should have been off.
Have made no progress in anything like housework
and could not care less.

I mostly sit and cry or sleep.
I feel like my heart is in pieces, I am surprised it does not
just come out of my chest.

My mother who was not a fan of animals would have said:
It is just a dog, Jeannot.
Since then I heard people who have mourned more for their
dogs then some humans.

I decided to have another puppy.
Can't replace Toto, not ever, he was unique.
I need to hold something and to love something.
I need a fur ball in my lap.
I need company.

Both Joan Rivers and Cindy Adams wrote about their puppies
and how they saved them when their husbands died.
At that time I thought they were crazy dames, well,I have joined the club.

My son is helping me to buy another puppy, these little guys
cost money, jeez! I know I should rescue one from the shelter
but Maltese rarely show up there and that is what I want in
temperament. I am not going to feel guilty about that too.
I have enough guilt every day to fill 3 life times.

We thought to name the puppy Obama and hoping that
this time it will bring the candidate some luck.
A snow white puppy named Obama.
That is fun.
We shall see , I am to look at one on Friday.
Wish me luck.
Wish for me to find some piece of mind. (Yup I am talking to myself)

Caregivers have to take care of themselves!!!!

Today I am not a happy camper.
Let’s rephrase that.
“Happy” is such an elusive word, correct only in some rare special moments.
So....
Today I am not a contented camper.

My b.p.was way too high so I had to bum a ride to the doctor.
Not my favorite place to go.
Doctors always find something wrong.
Like going for new tires and the guy tells you that you also
need new brakes , a cv joint and a host of other “little things” he is happy to announce to you.

Doctors have machines now, they whirl and spit out green numbers on little screens.
Could their machine ever be mistaken?
Could the nurse not read 880 when it is 000
I think so.

That peeve put aside I go into the office and tell the medical magician that I have back pain and signs of a kidney or bladder infection plus my blood pressure which
is going higher every day. I seem to follow the gold market not the dow.

I have a sweet doctor, he has known me for decades.
I told him ahead of time that I only have mild stress in life.
As he knows, my husband has dementia, my new widowed son is highly depressed, I have 3 dogs, one cat and a tank of crabs , part of this belonging to son.
I am losing my hair and will soon need to wear a small beanie like the monks
or the Jewish people at Temple. Take your pick.
I might consider a wig like Dolly Parton.
Anyway, my doctor he just smiles. Tells me to double my blood pressure meds and come back in one month.
Before he closes the door behind him he reminds me that it would be nice to
check my blood for cholesterol and diabetes.

I sit for a while and ponder what just happened.
Did he say a word about my kidney?
Daughter tells me he will find out with the blood work.

I go there once a year and every time he tells me the same sing song
“lets check for cholesterol”.
He thinks that every plump old lady has to have a high cholesterol number and be ready to jump into the diabetes category.

Three more days go by and I hear nada from the white coat person and his staff or nurses who now wear cute tops decorated with mums and or kittens.
Phone call done by daughter as I can’t hear very well on the phone.
Lets call it like it is I am now deaf. Low cholesterol but deaf.

The nurse tells daughter that my potassium is very low.
That my thyroid figure is low and I am to take thyroid meds like tout de suite.
Only my blood pressure is high.

How about my Mom’s discomfort? asks the dutiful daughter.
“Oh”answers the girl on the other end, there is no mention of this in
her chart. If she is uncomfortable she will need an anti-biotic.
I will send it all to the pharmacy of your choice.
A letter will follow explaining our findings.
Click, end of conversation.
So I thought I’d sleep on all this and star medicating in the morning.

I did not have a very good night sleep.
I had over drugged my husband.
He was quite stoned as my son put it.

I had purchased generic pills like Tylenol PM so he can sleep.
I did forget that one pill of the generic is the same volume as 2 Tylenol PM.
Ok , so I was a bit absent minded and gave him 2 generics.
If you follow that, it is like 4 Tylenol PM’s.
Ouch.
Well, not really ouch, he did not feel a thing. In fact the poor man could not
stand up to go to the bathroom. He sank to his knees and then fell, thank God, without hurting himself.
Called my son into the room for help. I said that I thought he had a stroke.
My son simply said: he is stoned, Mom.
Stoned? why is that I wanted to know.
OK, Mom, what meds did he take tonight ..........BINGO....the light went on
and then I remembered I had given two of the new generic pills.
I did not sleep much.
I kept looking and trying to see if the man next to me was dying and if the police were going to be at my door with arm bracelets that did not match my sterling jewelry.
Son kept telling me that he simply was going to sleep it off and of course he did,
he had the sleep of the angels, calm, quiet and a wreck for a wife next to him.

So this morning I took a long walk to the cemetary near my house, it is quiet there.
It is also an ancient place, most graves go back to the late 1800’s.
My daughter in law rests here. So does her mother.
I just go and talk to her, my head knows that all that is buried under
the dried grass is a gorgeous antique box and some ashes.
My head knows that. My head also knows that I can talk to her.
She is around if I beckon her. I tell her to watch over her husband.
He is not doing very well, he is lonely. Yes, she was a lot of tragedy combined with love and question marks. He loves her, he loved her through everything that was dished out for them.

I leave the grave and walk Toto while I am in a complete daze. It is like I half belong in here with the silent ones and half belong to this world with the leaves falling around me and Toto sniffling at every tree.
I do not even notice until it is too late that Toto just pooped on Mr Cagle’s grave.
I never allow him to do that. I was angry that I was so out of it.

All the literature about Alzheimer, all the people who have gone that route, all the friends and all the family have one mantra for me:
“Take care of yourself!”

I hear them and I do not know what that means.
For some people taking care of themselves would be to get a manicure, a facial.
I never went for that before so that thought is nixed.
For some people a trip by a pool and a martini is taking care of themselves.
I can’t truly leave this house for more than 1 day.
Taking care of yourself = eating lots of vegetables, fruit and excersize said my vegetarian friend.
My idea is and always has been that lettuce was God’s gift to rabbits.
Not a gift for me.
I walk and I seem to be running around the house all day long. I am not a couch potato. Oh but I am somewhat of a computer addicted personality and that, my friend, is the only way I know on how to take care of myself.
I can sit and write down how I feel and I will not hurt anyone with my words
or deeds, I can just write down what my ache is deep inside this chest.
I can write to tell my soul that all will be better tomorrow, that perhaps,
I can still touch a smigdeon of Faith, I can still know that somehow somewhere I will find the courage to see tomorrow. Perhaps see a rainbow. Perhaps I will know how to be good to myself.

Ed Bagley visits us

I thought it odd that old B. was sitting at the table and doing a lot of mumbling.
He is usually quiet and has a hard time making a sentence.
Now he seemed to be talking to himself and I needed to find out
what the story was.

"What are you talking about" I asked.

"This man on TV, right there (as he pointed) he was at my house all the time"

I looked at TV and saw Ed Bagley ordering a special cake.
A "green motif" cake no less.

Bob continued in long sentences.

"he lived here on that street ( a design on the table) and we lived here...
and he was at my house all the time. "

"he was a nice man, I like him a lot but then I think he brought us vegetables".

Once this whole session was over with, he put his head down ever so slightly and
fell asleep again at the kitchen table.

Ed Begley no doubt looked like someone he remembered from his youth.

Well, that same day Prez Bush came on.
Bob never, ever, liked him. Bob was a born democrat.
He looked at the TV and mumbled.
He had not reacted to the Prez in a long time but now he got agitated
about the man on the telly.
I asked him what was going on and he replied:
" that man, that man is bad".
I asked why and he replied : " I do not know but bad is bad".
back to the snoozing.
I was very surprised that he had some recollection of Bush as he has no
idea an election is going to happen and Bush will be gone.

I was not that lucky when it came to bed time.
He had again built a barricade between my side of the bed and his.
My roll pillows come in handy for that, 3 rolls and voila!
He said he did not want me to touch him. Therefore the separation.
He did not know me.
I lost it. I told him some nasty things and knew I was talking to a wall but I could not keep it in.
I think I even used a four letter word, which is not normal for me.
I threw the pillows on the other side of the room and crawled in bed.
A few hours later, he woke up, took my hand and kissed it.
All was well again. He knew somehow it was OK to be next to him.
My last four letter word to him then was "Love ye"
He said "me too" and we slept.
All was well again.

How many times have I done this? Dozens of times.
Do I get used to it and laugh at it? Sometimes and sometimes I just can't handle it like a lady.

Safety first

Safety. Like with little children you must consider the safety of an Alzheimer patient.

I purchased a new stove last year and I was petrified that my husband would try the buttons and turn it on.
This is a flat top glass stove so if you put anything on there and someone turns it on that could
mean a disaster.

Daughters who remembered what to do with the little ones bought covers for the buttons at a baby store.
I cant even start the stove when they are on.

Bought gadget for some of my closets so he can't open them.
He soon even forgot to try.

We puchased an alarm system for the driveway, it beeps when someone comes in or goes out.
We can hear if he goes beyond the driveway.
We also installed 2 nany cameras (purchased at Toys R Use about 150.00) places them where
we want to see where he goes.

These are not very expensive gadgets but they do help a lot.

The necklace with his ID will only work when he puts it on and he does not like to
wear it.

I had purchased a long thick foam to prevent him from falling out of the bed.
He did fall one time and that is a great concern.
The foam did not work.
He would push it so it would finally fall on the floor.
I now push a heavy overstuffed chair right by his side of the bed.
He tends to sleep on the edge these days but the chair is so heavy
and he can't fall in between either.
So that worked.

I undid the locks in the bathroom, he would lock the door and go to the bedroom (adjacent) and
no one could get to him or the bathroom.

My friend had to get one of these steering wheel locks for the car as her husband still wants to drive.
My husband broke several keys in the car door trying to get in.
Son now owns the car but he does not understand that.

Removed all small rugs, that helps both of us, neither one of us needs a broken hip.
I have to be here to help him and a hospital stay would mess him up beyond anything.

He lost his wedding ring twice, he was very attached to it and very upset.
He is one of these guys who never removed it.
We were lucky to find it again after each loss but then I got smart, I went on eBay,
found a sterling with gold wash wedding ring like his and ordered that
while I hid the old one.
He wears this new one and does not know the difference.
Oddly he now wears it on his right hand.

I usually have extra milk in the house, he will open a new one before the other is empty.
Somehow I never knew actually how much milks I had left, often I had 2 half full.
SO now I mark a big "NO" with black marker on the milk jar and he does pay attention to that.
For how long is a ?????

Change day by day

A new experience today.

Time for Bob’s pedicure.
Lately he has the hardest nails, they are so difficult to cut.
I saw he started a grown in toe nail so I worked on it for
a good hour, soaking, then adding oil to soak it some more.
Finally I had it all short and neat.
I was perspiring it was such a hard job.
Put on his socks and shoes and he got up and smiled
like a Cheshire cat.
“What?” said I?
“Good” was his answer.
He has a hard time making a sentence.
He kept smiling and checking his feet.
The thought came to me that his toe must have hurt him.
He never showed any discomfort but now that I think about it,
it had to be hurting.
Is there a level that with dementia/Alzheimer’s you do not feel pain?
Or is the pain there and you no longer know what it is telling
you?

I then told him he had to shave but he did not understand, I started to shave him with his electric shaver and he seemed to
like that until I got to his chin.
He quickly took the shaver and finished the job.
For a minute I thought he did not remember how to do that
but he did.

The heat went on for the first day this season and as he passed by the radiator he put his hand on it.
With a lightning fast removal of his hand he had a little cry , like a little puppy. He asked me”What is?”
I explained that it was the heat and we need it when it is cold
outside. Too much information he stepped away from the radiator like it was a bomb.
Could not grasp on to new effect on this object.

So the changes come sometimes together in one day or take weeks to come to a head.

I came home from work and he was proudly showing me a dozen chestnuts he had found in the yard.
Like a child, a smile of his is precious.
Look, what I have for you!!
Not a word being spoken but the eyes and the smile said it all.

I said: well that is a bunch, I am so proud of you.
While I said that I saw a painting of his on my kitchen wall
and I thought how often I praised him for his fabulous work.
Now I praise him for finding chestnuts.

It is not fair, or is it?
Who is to judge?

VA pensions available, check it out:

Recap: To all veterans who have been in a war, any war for 90 days are eligible for a pension.

Not very well advertised by the VA.

So I filed for my husband and I(wives too can collect when husband passes on) it was May 2008.
Now there are companies and lawyers who will do this for you the usual charge is 1200.00 when they visit nursing homes.

I filed and needed his proof that he had been in a war for more than 90 days. Our marriage certificate was also needed.

Letters came later with more forms to fill in. Nothing big or difficult just the usual government junk stuff.

Monthly I got a letter saying they were behind and they are working on it.

Last week I got the words I wanted to hear:

Your husband is indeed eligible, what you need to do now is meet with a VA representative and another party such as a lawyer or an organization approved by the VA to become a guardian.

The fact that I have legal documents that I have power of attorney is of no concern to the VA. They have to appoint somebody and I have to report back within 30 days or no deal.

So I am now on the hunt for such a group.

The amount he will get from this pension is still to be determined. As I wrote before I had hear some get 90.00 a month up to 1200.00 a month. I am not having HIGH hopes on WINNING BIG.

Please if you qualitfy apply asap.

The money is there and only 28 % of Vets have asked for it.

When you are no longer needed as a care giver:

I met someone in the store yesterday, I did not know the lady but somehow a conversation started. She had lost her husband to pneumonia, 6 years ago.
He also had Alzheimer’s. We compared notes. We became animated in explanations on what and how she had made it work or in some cases just give up.
She mentioned that his passing was a blessing. He did not reach the last stages so she still had some communications with him.

Yet, the interesting concept she shared with me is that she was “peeling off the Alzheimer’s residue” from her own being.

Think of it. Peeling of Alzheimer residue.
What do you mean, I asked?
She said :” I am not the person I was before my husband got ill.
I re-act differently to circumstances. I am concerned for my own state of mind. I constantly think that I have to adjust my daily hours to his disease and yet he has been gone for 6 years.

I had to learn to decide what I wanted to eat not what he wanted.
I had to take care of my own health and mine alone so I had a check up which was years overdue.
I actually had to relearn to have freedom.
That part is the hardest part.
Just to know that I have the freedom to sleep when I want is a big one.
I had to adjust all my rest according to him.
I still wake up in the middle of the night to see if he is breathing.
Then I see the empty bed and fall back to sleep.”

The undoing of care giving, she told me is like the beginning of care giving.
You learn it one day at a time.

We hugged, we learned from each other and we did not even know our names.

I shuddered at the thought that “undoing” is equally going to be hard.
I no longer know the person I have become.
My boss told me the other day that I am so different from 3 years ago
when she hired me.
I said: How so?
She replied:”you are somehow more accepting of your situation, almost like it is all-normal “

Washington @#$%^&

Several pieces of legislation, all supported by AFA, that will help safeguard individuals with Alzheimer's disease made significant progress in Congress recently.

Among them were two bills related to wandering that passed the House last week:

- H.R. 6503, introduced by Congresswoman Maxine Waters (D-CA), reauthorizes and expands the Missing Alzheimer's Disease Patient Alert Program. This Department of Justice Program helps local communities and law enforcement quickly find and identify persons with Alzheimer's disease who wander or are missing. H.R. 6503 authorizes up to $5 million per year in appropriations for fiscal years 2009 through 2015.

- The National Silver Alert Act, authored by Rep. Lloyd Doggett (D-TX), would expand "Silver Alert," a public notification system that uses radio, television and highway signs to broadcast information about missing elderly persons with dementia or other mental impairment in order to help locate them.

Although there is no time for similar legislation to proceed through the Senate and to the President before Congress is set to adjourn on Friday, Congressional sponsors intend to reintroduce both bills at the start of the 111th Congress next year.

And, thanks to a bill introduced by Senator Barbara A. Mikulski (D-MD), September 22 has been officially declared "National Falls Prevention Awareness Day."

--------------------------------

Now to have the Silver Alert into effect would be just grand. When will it be?

Check the last paragraph. The wheels in Washington turn very slowly.

Equally do they turn at minimum pace at The VA.

We filed in May 2008 for a pension which actually we did not know about and husband was eligible for the last 16years. It is a pension given to war vets who served in any war for 90 days.

Every month we get a letter saying they are behind and working on it.

For the most part it takes about 6 months.

Social security story: My son lost his wife in May. He filed for the generous amount of 250.00 which you are supposed to get when one passes away.

Today they called my son and told him that he would not be eligible because he was not in Texas with his wife, the day of her passing, but was with his dad and mother in NC. Fact is he came to help for awhile and he was waiting for the visit of his son who was coming in June from Sweden.

A few hours later the S.S. called again and said for him to go ahead and mail the paperwork, they would try and see if they can reconsider.

How generous of them.

Why a blog?

This blog was started last year when I was almost suicidal.
I say "almost" because it is not a word I allow myself to think about.
I believe in an afterlife and I think they would send me right back
and , boy, I surely am not ready to come back so quickly and start all over again.

The blog somehow was better for my release than my journals.
Perhaps I put it out there on the internet wires or waves as a call
for help. Perhaps I thought that somehow I would be heard and by some miracle someone would write back and say "it is OK, you can do this, it's not such a big deal as you make it out to be". It is OK.

The reverse is happening as now I get emails and people saying"thank you, I feel better reading your blog".
My mental state is up and down, no use lying about it.
Mostly the "down" is when other problems are weaving into this caregiver carpet.
If there is a shortage of money, if the kids are in trouble.
Then the "down" grows into a larger picture.
So what I am trying to say is that a 24/7 caregiver also has to remember that his/her life is not 100 percent about the ill person.
There is still a life out there with meals to fix, laundry to be cleaned, floors to be washed, dogs to be walked, children to be consoled or comforted, friends who need a friendly word.
Life goes on, you have to think of the "self" , try and read a book even if the dishes are in the sink waiting for you, do not listen to the news, you can't fix it, have a manicure, have a massage, have a "sitter" and take the afternoon for a walk, a movie, or just sitting in the quiet of the library.
I recently have learned to have lunch by myself on Main street, I have never done that before. Now I think it is great fun.

Recently at an A meeting an old lady said that she was going to the hospital as she had been diagnosed with breast cancer. Our faces all dropped and she was smiling. She was surprising us all with her statement:
" I am so glad that I will be in the hospital for a few days, away from him. I will also need some help when I do the chemo. It is my turn to get some help".
She was actually excited about her horrible illness. All she truly needed was some rest.
I read in Trusera that 30 percent of caregivers become ill.
30 percent!!!
Ladies, gents, children,in laws, you are taking care of someone so be sure to take care of yourself , you are needed in this equation. You are needed to be good to yourself in spirit and in body.
Now I will try and do what I preach. Yes!

how did I do in the beginning?

http://www.trusera.com/health/search?q=alzheimer&x=31&y=10

The hardest years for me dealing as a caregiver to my husband with dementia were the first 5 years.
Yes, oh, yes I know the worst is still to come.
In the new books they talk about 7 stages now (used to be 4) and
B is at the end of stage 6.

The first years you just fight it. It is the land of denial.
When he/she has a day and remembers everything then you just tell yourself that this diagnosis is so wrong. What was I thinking?
Golly he knows his whole life history.

Hours later it creeps back in, you notice little things, and he looses
his rings, he hides his money under the cat box, he tell you that he never, ever, ate bread. He just can’t eat bread. Basta!
An hour later he fixes himself a peanut butter sandwich. You are
beginning to doubt your own sanity.

Could it be? Could it truly be that he has dementia/Alzheimer?
How will I know for sure? Am I not being rational?
This man can paint masterpieces, can recite every opera, and can tell you which period is the brilliant period in cut glass. He is a fountain of information.

Surely bright people keep their minds busy so they will not get this.
Surely it is the couch potatoes who just sit who get this. Not my brilliant husband.

Doubt is becoming my middle name at this point and it goes arm in arm like good old buddies with worry.

I truly do not know how long before I accepted it.
Probably a year, then my kids took so much longer and gave me a hard time.
They, all the family, thought I was exaggerating.
They were not here 24/7 . This creeps in a single little ant in your pantry and
one day you open the pantry and you have a colony of them.

For years I went to bed thinking about B, last thought before I fell asleep.
Supplications and deals made with God. Just before I would say “this can’t be so”
I’d wake up in the morning and first thought was about the illness.
Then thinking about my deals with God, fresh in the morning I started to doubt God. So the deals were off till the evening when the routine would start all over again.

Years I did this.

Now we are year 10 and I have a very hard time remembering the man who painted master pieces, who taught me about art, antiques, operas, music,
Vaguely now and then a film shows up in my mind with little details, seeing him paint, us driving for a fun day out, dancing in the kitchen without music. Oh gosh, did all this happen with the person I am looking at now?

Was it all real?

Husband for sale ?

This week has been a challenge.
Old B. has been looking for someone, he is not sure who that is.
I know he is looking for me but does not know who is standing in front of him.
Son has a very long body hugging pillow, covered with a wool blanket, cat decided it was her new home.
B. went in and out of the room thinking that the person he needs is under
the blanket, he did not want to remove cat. When I removed the blanket he decided that someone had
hidden the person.
What person? I do not know.
Then he added : I do not remember things, it has been 2 months that I do not remember.
This scenario has been going on all week in one form or another.

I took a different turn, I said” You are forgetting but it will get better”
Son had one of his “one highbrows lifted to the hairline look“.
He was not happy with mom lying but I know for this one second it
will make his dad feel better. The next minute that too shall be forgotten.

We had a sale at work for our charity “I AM” and so I decided to give a lot of doo dads and try and get things simple. Each box had to be inspected,
no matter how I tried to sneak the box out, he found a way.

Then the chatter started “ Who are you to take all this? This belongs to me, this is my house, this is mine.
It did not matter that it was my collection of frogs or angels, they were his.

He saw me pick up the chestnuts fallen from our tree, he now goes out finds one chestnut and brings it home. He gives me his treasure and smiles, he expects something in return so I give him a kiss and tell him he is a big help. He is 3 going 2.

AT the sale someone was trying to give away her husband to our charity, she said he came with a nice car. We giggled and I could not grasp all of the joke, the serious me came to the surface and I said :”NO NO NO, I do not want another husband, not ever!. Daughter tried to turn my seriousness around and
said: What, you do not want another husband with Alzheimer?
Another woman came over and hugged me, she simply said: “Me too, mine is in stage 6. “

We suddenly bonded, we did not know each other’s name but we knew what we felt in our hearts, where the pain lives, where the exhaustion resides,
where the hope is gone for better days together
Heck you do not know if there ever will be better days.
We just became sisters in this world of caring.

Counting coins means it is time for dinner

He sits and counts his coins. I no longer give him bills, he lost too much.
What does this translate? Counting his coins means something?
Yup. It is near dinner time and he thinks we can go to B K and he can buy dinner.
He counts over and over again.
Row by row, the quarters , then the dimes, then the nickels, he has problems with the pennies.
I am not sure he knows what they are.
He does not want to tell me how much he has, he hides it
in a little pouch and then in his drawer.
Drawer is his domain.

Now I have to hussle, he is hungry,
When he counts it is either that he is going to drive home, home is Santa Cruz Cal. or he wants BK.
Since neither are going to happen I better get going to
fix something soft. The teeth are really bad.
The dogs too seem to know it is that time.
They are already lining up in the kitchen.

From my desk I see the action and I think:
these are 3 smart Alecs, Geez they know too when dad counts money
it must be dinner time.

I worked late today so he had the “hibbie gibbies” however you spell it.
Son said he walked around the house all day.

Last night he was waiting for his Montana sister.
Today, no doubt, he was waiting for me.

Come on, Jeannot, go fix something delectable that the dogs can eat too.
He does feed the dogs all the time, no matter how I tell him not to.
So again nothing with onions or chocolate.

It is what it is.
Just cool it and cook.

Caregiver's lament

So it has been one of these days, I truly believe that in every caregiver's day there comes a moment when you think you can't possibly do one more chore.

There comes a moment when you know you have given all there is to give.
What is left of yourself? You just sit there and ask yourself that question.

Who is this person in the mirror? Who is more neglected, myself or the house?
Look at my toe nails? No, better not look.
When was the last time I had a night cream on my face?

When was the last time I went to a movie in a movie theatre?
When did I wear lipstick?
When was the last time I had a belly laugh?
When was the last time I could have a day without tears?

Why do I have a stack of clothing to handwash and do not get to it.
Only mine does not seem to get done.
Why is that? Maybe because I am busy?

When was the last time I got in a car without plans
just to get lost or find a new place I have not seen before.
We used to do that all the time.

What used to be is no more.

Live in the "NOW" , great formula I learned a long time ago.
What is my "NOW" now?

It is to have a 82 year old behave like a 2 year old.
There are the tantrums, in stores everything has to be touched,
at home we are told that we should go away.
In restaurant bathrooms there is panic, this is a different faucet than at home.
There are people visiting but we can't see them.
Bedding ends up on the floor or hanging on the four poster.
Bathroom issues are becoming a greater issue.
Food is only good if it is with lots of sugar.
Wear turtle neck when it is 90 degrees and refuse to change.

My "now" is checking all night why his breathing is so low.
My "now" is checking our BP and seeing that his is normal, mine is out of reach even with medicine.

My " now" is worrying about the time that I can't do it anymore.
Oh, yes , that was a few minutes ago.
Oh, heck that was before venting.
I will be fine now.

What the heck, it is what it is!
It is life.
Posted this on www.trusera.com

Humor in all situations ....................

You have to bring humor in it or just give up.

Came home and saw that husband had draped our sheets over the four poster bed.
When I asked him why this was done.
He explained as well as possible that water came in the house and he needed to dry the sheets.

First thought was that perhaps he had an accident, no everything was bone dry.

Then he showed me on the TV the mess with hurricane Ike.

He just could not separate the TV from the reality in our home.
My daughter was with me and she turned it into a joke. She made a different pattern with the sheet and pretty much made the bedroom look like the entrance for a harem.

We all stood there laughing and old B. laughed the loudest.
Soon he forgot about the storm and the water in our bed.
Also I quickly turned off the news.

My daughter is a teacher so she gave me pointers.
Treat him like a 3-year-old Mom and he will laugh with you.
I had tried that before and she is right but I often forget that advice.
I have to get with it.

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Morality with Alzheimer

So the other night an encore. I was told by mu husband not to sleep in "his" bed.
He hardly got the sentence together but it was something like "no women in my bed"
and "not right".

In the past I started to argue (like arguing to the wall). I would tell him that I am his wife, I would beg him to try and remember, I would show photos, I would loose it and get angry and he then would become more and more frustrated.
An hour or two of total loss of energy with no different outcome.

That particular night I decided "whatever!". Crawled in bed and soon pretended to sleep.
His mumbling never stopped. Then he went to son's room.
Mind you son has been here for months and dad ignores him.
Does not know he is his only son.
Almost growls at him. Much to the chagrin of young B.
Now he decided to seek council with him, that was a new one.
Young B did not understand what he was mumbling and then followed him to our bedroom.
As he pointed to me B, said "this is Mom, this is your wife"
"You go ahead and sleep next to her and it is OK"
My husband took this as an approval and crawled inbed.
He turned to me and shook my hand and said "Hello".

All was calm.
An hour later he woke up, I had not been able to sleep, I had spent too much time
feeling the pain. He turned to me, took my hand and kissed it.
He was back no "normal" , the glint in his eyes told me he "knew" me.
We both fell asleep hand in hand like we always do.

I was blessed with another night when at least he knew it was ok to sleep with this woman. He has never given up his morality even with Alzheimer's /dementia claiming his brain

Possibly a mini stroke?

Last evening, I saw B. slide down his chair till he almost hit the floor.
SOn and I rushed to him and at first we did not get a response. M y heart sank , I soon found a heart beat but we could not get him up. Son carried him to the bed, he became dead weight and very heavy. I undressed him while in bed and then he started to open his eyes and fuss at me.
We just do not know what happened, I think a mini stroke.

No signs on his face or anything else but he could not stand up when we wanted him transported to his bed. His legs gave out.

I could n't sleep , I constantly checked his pulse but he slept like a baby.
I had to do the audit at 8 AM so rushed home afterwards and B just got up and was fine.
He was able to walk ok and eat. So...we shall keep an eye out and see if this happens again I will have him checked.

Today would have been difficult to get to Asheville. No gasoline left in town, not in Asheville either. Would not want Rhonda to have to drive all these miles to the doc and not be able to get to work on Monday.

No wonder no one showed up at the shop.

Well, I had the big shot auditor in yesterday. I do not worry about it. My books are balanced every day before I leave, no exceptions. So can you guess for what I was written up?
The guy came into my office, saw that he needed another adding machine so I pointed to the managers office and he got the machine.
Then he stood there in my office looking for another chair, my care giving, helping people nature took over and I opened the door (a No No) swiftly took a chair from next door and came back in.
Write up time! I am not allowed to leave anyone with my safe open. Not even the highest of all mighty auditors.
I was laughing when I found out, told them that I am not exactly worried about my career.
Give me a frigging break. I am 76. I am the best auditor they have and they know it.
I am probably going to have to leave before Christmas if the situation deteriorates more at home.
Auditors are paid to find mistakes. Or to just balance the books and hope there are no mistakes. Boss auditors have to go back to headquarters and show that their motels/ meals and miles have paid off in some way. Poor guy he had to go home with something.
He also found a few pages my manager did not initial!
C'est la vie, que voulez-vous!
At least I got a giggle out of it. 20 years ago it would have been a drama for me but now....heck life has more drama than that.
Good night, Ari, wherever you are, watch over Bobby, he misses you so.

I am beginning my 4 day week at work. I think I will like that.
Have tons to do and hope I do not fall asleep at 6 pm.

Was invited to the Biltmore house tonight, there is a special viewing of the flower carpet they installed.
I sort of said No to the invite.
I know I will be too tired.
Besides that I am such a critic of flower carpets.
Back home in Belgium we have conquered that art.
The Grand Place in Brussels gets that dressed up once a year and it is just huge and fabulous.
Once a year the streets of Loochristi are lined with flowers , all different carpets by different growers, mostly begonias.
Here a sample on how they start it in Brussels:
http://www.expatica.com/be/articles/news/Brussels_-bi_annual-carpet-of-flowers-is-on.html

At the Biltmore it is their first year and they are putting flower pots together,
not single flowers. Still nice!

OK so I am homesick. Probably more a wanderlust, trying to get away from the house. The conditions. The ...whatever.
I'd be happy to go to a motel for 2 days and just sit.
Must have Toto with me.

No rain in sight. Restriction is still going on and will be for some time.
At least we can still take a shower.
Bad water management from the city leaders too.

I am going to make themost of these 3 days and hope that by day 3 I can sit down and read something, that would be a novelty.

FOOD AND CARS

Leaves are beginning to fall, the intense heat is diminishing, energy is returning and I
started to cook and bake again.
Nothing pleases me more than to see someone who loves my cooking.
B always loved everything I cooked. Amazing.
Son is another matter.

Problem now with B is that if he finds as much as a minute pepper flake he will put it aside on his plate. Anything with a different color and it is also small he thinks it is something bad.

He also does not like mushrooms anymore. Loved them before A.
Loves everything soft , why? because his teeth have gone very bad and he refuses to go to
the dentist. No doubt they would pull them all. B said no false teeth.
Evidently he remembers what that means.
I am on the fence on taking him anyway but I know he would not learn to
use the new teeth so what is the use?

I make him mostly mushy stuff like mashed potatoes and very soft pasta and rice.
Chicken I cut in very small, small pieces.

He has an appetite but he also shares a lot with the dogs.
So I have to watch him if I cook with onions or chocolate.
I assure him not to give this to the animals but he does not understand
so I mostly stand around to see what is going on till he is finished.

Last night was another argument about the car.
Car parked there now is not his, it belongs to son.
He never had a red car but he insists that this is his car.
He tries his keys to get in, he already broke one house key trying to get in.

I try and reason with him about it but he gets angry and turns away.

He may not know his children but he sure knows that he used to have a car.

I am cutting my working days to 4 a week. We shall see how much I can accomplish then.

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