Response

I had tons of emails and response on my entry since WOW printed it.
I am in shock.
I "think" I can write ...to some extend.
Never learned the English language from a person, I taught myself.
Just writing the word "taught" makes me giggle, for years I wrote "thought" then one day
saw it used correctly.
I think if you speak and write Dutch and French then English comes easy.
Have you  ever had battles with the French verbs????????
Anyway since childhood I have been writing.
Only child, lonely child, often verbally and physical abuse IF I did not do something "perfect"
mother wanted perfection from me.
Gosh i t is hard to write this. She was a good mother but had her own demons and 2 wars in her life to deal with. I just wish she would have learned to encourage me rather than to belittle me.
 am starting to ramble.
I would write notes t myself on the butcher's paper where once was a porc chop.
Paper was a luxury especially during the war.
We had erzats paper with pieces of wood still in like splinters in a white sheet reminding us
that all is not well with the world.
I wrote about everything that had happened to me that day and try and hide it.
When you have 4 rooms in a house and only a hand full of drawers where do you hide things?
I did not have a room of my own.
I hid things in the bushes outside or in the rabbit shed. It was dark in there and rats would come to get the babies so Mom was afraid to go in there (I was too) but I had my places under the rabbit shit trays.
If I was found out then I got in trouble.
Writing to one friend when I came to the USA was a constant, she had kept my letters for decades and when my daughter did question my first marriage my friend showed her the letters.
She told her : read for yourself what your mother had to deal with.
In the last 3 years I had an email friend who listened to me every day and every morning there would be a letter to booster me up. She kept me going. Writing kept me going.
That is not to say that it was all peaches and cream.
There was a day that she wrote something like : put a pillow over his head....
Not that I had not thought about it myself more than once.
Most of all I had several ideas in my head about killing both of us, and what stopped me was
very silly, husband's studio was and still is a mess. I did not want to leave that for the kids.
Then one day I thought of burning the house down with us in it but did not have a great plan.
The dog was in the way, could not kill him.
Strange thoughts, you say, for a loving wife.
Judge not until you have walked in my flip flops.
There are days with total exhaustion, total loss of a "normal" mind.
You search for the extremes just to get relief.

Yesterday I was able to write to 2 people in the middle of their caregiving years. I was able to tell them honestly what hell they can expect and what good days will do to them.
I am an open book.
The pages may be dirty from spilled guts but life as a caregiver to a dementia patient is anything but pretty.

A friend of mine said that his mother was so funny and how he loved "visiting" her at his sisters house, it was a hoot he told me. I wanted to strangle him.
You go for a few hours and giggle with Mom and think this is just great?
Did you change her diaper by chance? Did you feed her? Did you watch her all the time to see if
she would harm herself by turning on a stove?
I don't think so.

Enough ramble for today.
I am going to have a great day, I am going to walk the dogs until their little legs fall off.
Oh well, Bijou likes to walk in my arms.

In case you could not find it:

http://www.wowowow.com/life/13-years-saying-good-bye-alzheimers-disease-jeannot-kensinger-499384

WOWOW

Miss Evans emailed me and asked permission to print a piece from my blog.
When I saw her name in my incoming mail I was trembling.
So I am impressed by people of her stature....

I sent her 2 photos telling our story very well from the day we got married to near the end.
I then let it rest.

I did not think much about it anymore and let it go. My new motto: if you can't do anything about it then let it go. I am trying to do that, not easy, I make up things to worry about.

This morning I get an email from a Facebook pal and she tells me how she loved the article in WOWOW.
Say what?

So I rush to the site , do not know where to look, I put in my name and there it is, not my LAST blog but it was so odd to read my words in that site.
I cried, I was overwhelmed but now at 10 am people are responding. People I have met there since day one.
Someone wrote that she saved my story I had sent her years ago. OMG.

I think that old Bob is watching and smiling.
Thank you WOW , THANK YOU

The last reality check,

So Sabrina reminds me, like I need reminding.
"Mom, we need to pick up daddy's ashes today".
"are you up to that, Mom?"
Of course I am, of course. No small wildflower am I, I am a very strong purple orchid.
I stand tall and do not require much attention (Oh yeah?). Well, not so much lately.
I am telling myself every day that I am STRONG.
Dressed in purple today to do what is asked by the Alzheimer Association on their day.

Sabrina goes into the funeral parlor and I am listening to Sinatra on her new radio
gadget. Boy, does she like gadgets, seems this is a new radio for which you pay.
What will be next, she already has worn out some of these blackberries or is it
a blueberry. Who can keep up with this? Who has the knowledge for this?
Who has the money for this.
While Sinatra is singing I am trying to distract myself with all these questions.
Oh there is Nancy now. She never did have the pipes ...Frank kept them for himself.....
Oh...shoot...there is Sabrina holding a green bag with gold letters on it:
Shuller funeral home".
Do they expect me to go shopping with that bag? Scare everyone at the check out.
Opening of the car door, Sinatra keeps on going after all she paid for him this time...
I try and concentrate on his lyrics but Sabrina  will have none of it.
"You want Daddy in the back seat?"She asks.
"No, honey, on my lap".
Reality....I no longer hear the golden voice and I no longer know what to think.
I am holding a very heavy box situated in a useable shopping bag.
Grandson, Mr. Green, would like that.
So I am trying to figure out what I should feel right now.
I caress the box.....no vibes....no one whispering in my ear."It is I, honey, it is I"
I do not find any connection to the green bag and the man I kissed goodbye about 16 days ago.
So this has to be a trick. A horrible trick and I am not going to see him again.
Someone has snatched him away forever.
He promised me he would never leave me except for Rise Stevens, she is dead too.
He probably is asking her to sing to him right now.
Thoughts scramble in my head, I am beginning to wonder if I will ever be normal again.
Sabrina's voice shouts over Sinatra :
"Mom, can we have lunch now?"
"Lunch? Oh yes I need food"
My third or fourth "best friend" is food.
Have the derriere to prove it.
We drive to the restaurant and I suddenly start taking charge again.
Turn to Sabrina and in all earnest ask her:
"Brie , can we leave daddy in this hot car? Do we leave the ac running?"
My gorgeous daughter looks me in the eyes, first with a wondering look and slowly her eyes start to shine and twinkle like they did when she was little and found something very funny.
She burst out laughing like she is never going to be able to stop.
I am in a dream state. What is so funny?
In a mega second I find the answer. I said what?????
So I start to laugh and here we are Brie, Mom, Sinatra and ashes of my loved one in a very cool A/c car and we can't stop laughing and crying all at the same time.

Ashes , ashes, we all fall down from laughter
of course we know that in the game they were referring to the black plague.
We just are not yet used to have daddy in the form of ashes.
He lives in our heart, that is where he is. That is where he belongs.
Good night, Bob, wherever you are.
Watch over me because I am too much in the fog still and I do not want to trip and fall again.

Two weeks do make a difference.

I am somewhat like the phoenix coming out of the ashes.
Renewal.
Survival.
clearing the mind of unpleasant clutter.

 cleaning the cupboards
cleaning out what was not used in years.
Hospice here we come.

Getting my office/workroom in order for the jewelry making.
Must start next week in all seriousness.

How do I rebound so fast?
I have it figured out.
At the beginning of Bob's disease I was in denial yet I knew we were in trouble.
I tried to ignore all he forgot.
Slowly he became my obssession.
I got up and first thought was Alzheimer, went to bed and last thought: He has Alzheimer.
Slowly, ever so slowly he left us as his mental state became reduced to first
sentences which made no sense, then fewer words , and the mostly silence unless he
became angry then he could spout out stuff I never heard him say in 40 years.
Like the clock ticking loudly you notice things, this  is different today and that was different
from last week.
The man vanishes, memories fail him , anxiety becomes his companion.
I have good days and bad days.
People tell me at least once a day:
"Remember it is not your husband anymore, it is the disease."
I want to punch the speaker in the face. I want to be violent , I want to scream.
Instead I go inside my head and try for the hundred time what this really means.
"It is not your husband" well wtf explain that one to me.
He is there in front of me , in the flesh.
"It is the disease" oh that is a great excuse for bad behavior.
I can ponder that statement all day but I can't wrap my head around it.
Just words. I miss my husband, bring him back, all just words from
people who do not live with him. Words, words.

For 13 years I miss him more and more every day.
He leaves me one thought at a time.
He wants to be hugged and then the next day pushes me away.
I miss him.
There are days when he looks at me with a question mark in his eyes.
"Who are you?"
I miss him.
There are days that he hits me because I want to wash him.
He was the forever gentle man. Never in his wildest dreams would he have thought
about hitting me.
I miss him, the old one.
13 years of saying goodbye, that is a lot of goodbyes.

Then comes March and I break my ankle.
I can't take care of him anymore.
I want to, "they" the new powers at hand tell me that I
need to recuperate, I need to take care of myself.
Shock City! Take care of me. How do I do that?
I have not given much thought about me but to put food in
my body and watch him 24/7 and walk the dog.
That is my life.
Wake up and feel if he is ok and if he is in bed with me.
That is my life.
Changing and washing the bedding daily that is my life.
Cooking sometimes 3 different things so he will eat
that is my life. I then eat what he does not want.
I hate waste.
Looking in the mirror , fix my hair, wear lipstick?
are you kidding me?
I can't stand to look at that old woman who has aged
20 years in the last ten.
I can't bare to look at her eyes, they are always so damn sad.
When I look into her eyes then I feel the pain even more
and cry like a bubbling idiot.

So after my rehab I come home and he is no longer there.
The bed feels very strange, after 42 years to sleep alone in a queen size bed
is like being lost at sea. Where is he? I touch the sheets and he is nowhere.
I picture him on the low small bed at the center and I cry.
I want him home.
Well, they tell me, you want that struggle again with his sanitary
habits? With his running out evry five minutes.
You can hardly walk and you want that?
So I start getting used to the fact that I have a lot less laundry
a lot less cooking to be done.
A lot more sleep.
I heal , my leg is improving every day.
Oh I miss him so much.
I do not even want to eat at the table anymore
I have gotten used to eating by my computer.
The computer is my friend.
emails cheer me up.
We are with you they say, we love you.

After six months to the date
my best friend leaves the nursing home in a bag.
He no longr needs nurses, no longer needs me
the kids, or his sibblings.

I am a widow.
I just hate that name, hate it.
It sounds Victorian to me, similar to a spinster.
A widow. It will take getting used to.

We are now 2 weeks later.
I feel differently and it is hard to explain.
In some ways I feel free.
Nothing to worry about anymore for Bob. Not going to
the nursing home. Checking for bed sores, checking his
clothing ordering hair cuts, little bit of this and a little
bit of that. Make sure to always have bananas for him.
All this is slowly vanishing from my mind.
No, not to do list anymore.

The leg is getting better every day, less swelling.
The psoriasis is rampant, sign of stress but I am so
calm!
I start to make plans.
I start to order beads, wires, mini tools, and I dream
of making jewelry again like we did in 1970.
I am rusty.
New stuff I never heard off is now available.
What we did with out fingers now a little machine can do.
I have a work bench so not to have the table cluttered
with beads and they may show up in the meatballs.
Son , Bob, helps me.

I need to get the yard ready for winter,
plan for the birds, find time to plant tulips which I
did not do the last 2 years.

I am feeling good when I wake up.
I look at my companion, my Maltese Bijou, and I
smile at his big black eyes begging me to take
him out.

It is fall, the chestnuts are dropping as the squirrels
are chewing the stems off. I gather what is left
while Bijou barks at everything. He is now my protector.
A butterfly comes to say hello.
I talk to old Bob wherever he is and I
thank him for the great married life he gave me.
He has to know that I will love him not until death us do part
but this kind of love I have is forever.

And then the end

The last month has been one of continual anxiety. Bob would eat a bit one day then he gave up the next to even drink water.
This went back and forth. Then he was not able to walk anymore or did not even try. Sabrina slept with her phone next to her, I jumped with every bark of the 3 dogs. Sabrina was to be alerted if anything was happening. She would come and tell me.


We were all on pins and needles hoping Bob would be able to make the transition in comfort, hoping he could leave his world of unknowns.
Yet, every time I saw him I did not want him to go. It is so hard to see him like that and yet selfishly wanting to continue t hold his hands and kiss him even when he is not aware of it ( as we think we know).
Months ago I had planned a trip to my friends house in the Berkshires. She is 80 and we have known each other for 53 years. We are more than sisters.

Sabrina had a long week end for labor day so we decided that would be the best time to go. I can't travel alone anymore, I hear very little even with a hearing aid and when I am stressed the hearing shuts down altogether.

Then came a call that perhaps we should hire Hospice to help at the nursing center. We three Kensinger women went to sign him up.
It was August 31. The nurse said that
he could last 2 days but also 2 weeks since he still did not show any signs besides losing the weight.
There we sat all of us at the table trying to know that this was real.

He had almost died in March at the Va hospital. Then he did not want to eat at one nursing center. Then he ate. Then he picked up and walked halls like a runner in Golden Living. Then he would start resting and did not look good and I cried my eyes out and thought I would never see him again. The nurse came in and said : Honey right now he is healthier than I am. He has a very strong heart. I did not believe her but the next day he is up and running again.
They loved him there, he kissed the old ladies hands and teased the young nurses.

So, was this for real? A Hospice nurse does what? we asked. We tried to swallow all that info. Then I asked my question which had kept me awake many night before:
Can we go on this trip, will he last over the week end? No one could answer that with any certainty.
At the end the answer had to come from me.
I had been there for him until I broke my ankle, I never wanted him in a nursing home but my injury forced us.
I did not want him to die alone but then how could I and the girls keep vigil all the time?
I asked Rhonda is she could take over for the week end. It would be an honor she said. And that she did.
Sabrina and I left for Mass. I had said goodbye again but I knew it might be the last time.
When you take care of someone for 13 years y9ou say goodbye when they forget who the dog is. When they forget how to open a door, when they forget how to wash and then slap you when you want to wash him. I said goodbye a thousand times, he did not know the grandkids, hated them, did not know his own kids, then did not know me.
Did not remember his mother, his sibblings. Did not know what snow was.
When all this vanishes day by day I said "goodbye Bob, my man is no longer here, a stranger is taking over the body of my best friend".

I decided to leave with Sabrina and Rhonda took up vigil for 3 nights and days, she was holding his hands when he left. She had candles in the room, had played operas, Christmas music, and read to his unconscious body.
The hospice nurse told hr it looked like a regular house room in there.
Rhonda said I forgot the rug. She also had his paintings and all our photos on the wall.
He had pointed to my photo early in the week, now he was asleep.

Bob's wishes as are mine, was to have a cremation and then scatter him in the mountains.
Then we had calls from the Western branch of Kensingers, they suggested a military funeral....say what? Bob was so anti military and had left the service
in 1945. His brother Earl should have had a glorious sent off as he was a war hero, he was a marauder. To my recollection he did not get that.

Needless to say I was a sudden vilain for leaving my husband. Did anybody every ask me if I needed help? did anyone come to see him in the 13 years? So why give me grief now?

His wishes are being done. Basta.

I have known that man for 42 years, we worked 24/7 together. We knew each other like we were having one vein running through both our bodies. We were one. Good times and bad times, we were one. We struggled together, we had fun together, we loved the kids together and the grandkids.

Well I am getting angry at the things said to us so I am going to close this blog for today, I am not yet finished with his life. Honors will come to him with a one man show and then we can again celebrate his life.

Neglected garden

Never has my garden been so neglected as this year. The broken ankle had a lot to do with it. So I let everything grow.
Including weeds.
Conclusion: In all our 36 years here I have never seen so many butterflies and bees, birds of all sorts too. It is just great.
So obviously they do not know the difference between buttercups which invade all, wild morning glories, dandelions and my 35.00 special Japanese maple also in bloom.

I think I will let it be till next spring and then maybe, just maybe, I may do some weeding.

Trying to see if I can still do this

Handknotting beads was one of our hobbies during the 1960's and 1970's, hippy time.

Bob and I worked on hundreds of necklaces. So I decided to make some perhaps for presents if I can still get the hang of it.
I do not have all of the materials yet, yikes they cost money!
Used to be so simple, we had a choice of perhaps 2 or3 cords now there are all sorts of gadgets, findings, and enough to spent your allowance in 10 minutes time.
They even have a knotter now which I do not like. Played a bit with what I did have this afternoon , made quite a few mistakes but I learned a ton from them.
Except for the hemp all pieces were
vintage.

I think I will try a few more tomorrow.

Finished with painting

My workbench is set up and painting is done.!!!Need to hang up paintings, can't stand bare walls.

Have a lazy streak

I had all these topics in my head to write about but did not get much computer time in this week.
Excuses: still too hot for me.
secondly: still sleeping during the day
thyroid not being very nice.
thirdly: started to sort the bead stuff and trying to start.
fourth: lets call it what it is, a mild depression AGAIN.

Visits to Bob are getting harder and harder but he messed with my head or did I let him mess with my head?
For a long time now he would stroke my hair the way he always did.
He would try and get some order in my strands while we sat at the table.
He would always comment on what I was wearing and touch the fabrics.
(I should not buy large flower prints!!he said)
So he continued to do that at the nursing home. The girls and I thought he remembered this somewhere deep in his memory bank.
Not so, I thought I was so special, we walked down the hall and one of the mean ladies sat in her wheelchair cussing at a nurse, she has hair (my color) but down her shoulders, he went over and touched her hair very gently.
She did not notice which is a good thing, she is a fighter.
My bubble burst. He does this to others too so he did not remember me.
He is and always will be a very gentle man.
He had fallen again but he is made of iron. Seems he does linger too often in a room and checks out the chests of drawers.
Well, he did this here in our house for years and years. One time all my underpants were gone, I found them with his socks hidden under all his stuff.
No, he never was a cross dresser do not think he had intentions of becoming one.

I wish I out of this "black cloud over my head" feeling.
Not my nature to be so gloomy all the time, I hate it.

Thanks for the article SW

a friend sent me an article from the New York paper about feeding  in the end of Alzheimer disease.
To my surprise they are saying the same I have been saying for weeks.
"Feed him a banana!!!"

I just said that because that what he ate a lot at home, that and 4 yes four gallons of milk a week.

The article also states that research showed that tube feedings do not prolong life. They are uncomfortable, often rejected, harder to swallow and do not have the human touch.

A human touch with handfeeding is recommended and for sure the bananas!

Who knew that I was so smart? The survey did not call me.

Painting and panting

finding out that painting a room at age 78
is not like it was at age 50 something.

August and the heat is back

We had it cool for a few days but ,of course, it had to come back.
The moods around here are getting a bit lighter, we are finally at the end of paper work for Bob. Two lawyers had done some of it, years ago and both screwed us up by not filing what had to be done....enter lawyer numero 3.

Where are the pro's who take your money and do their jobs????


By saturday  we should be done with the office/work room.
Bobby painting the top and I what I can reach. I am not 40 anymore.
I am exhausted after 3 hours painting.
Then I need a map. Where are the days that I just got out a brush and finished a room in 2 or 3 days.
I could not wait for Rhonda to finish, I was getting clutter fever from moving furniture here and there, curtains , knick knacks ~all fragile~ and between all that 3 dogs not knowing where to walk and forcing themselves into holes to small for them.
My hair is falling out from psoriasis and thyroid problems but I was ready to pull it out!!!!

I still have to paint my bedroom but I think I will wait for cooler weather.

Friday we visit Bob again and my heart wants to run there. Yet when I get there and see him I am totally in shock ,disbelief, and every organ in my body starts to ache for him.
It is not fair, a gentle , caring, loving,very spiritual man and a shell is left, not even a memory anymore of what he had lived for.
I love and I hate to go there but no one can keep me away.

August

for a change it was nice and cool yesterday. Hot weather back on the way for the coming week.

The dreams are horrible.
I am now in the habit of reading in bed till 12 or 1 , afraid to fall asleep.
This whole night I was showing Bob fold over in his chair and barely knowing where he was or what was going on.
Every time a person would come I would show them that Bob is sick.
I woke up with tears running down my face. Not enough to cry during the day, I have to do it my sleep too?
I was doing so well...............
maybe when this office is back into shape and I can start on the jewelry it will be a nice diversion.
so....back to painting, perhaps I will have this done tomorrow.

after the storm

comes the calm.
I was so angry this morning when I blogged. Now near bed time I am exhausted but in better spirits.
I know that I just can't change the situation.
It is the nature of this disease , the food is of little interest and the afflicted becomes skeleton like.
It is hard to watch, I keep telling myself that if I could have him back home again I could try and feed him more.
To what end? to prolong this horrible state he is in?
How unkind of me.
Do I want him to continue like this, a mere shell of what he was?
Am I crying more for myself or for him?

Good news dept.:
The kids are trying to readjust the marriage, they had a bad bump in the road. I think they can make it work.
28years is long stretch and most of it was good. A relief to my ears today.

Horrible days

It does not get any easier ............
call yesterday.........he fell, did not get hurt.
Nutritionist talking to us
Alzheimer nurse too
questions about when they will take different measures to get him to eat.
His wish would be not to prolong this and we have the paperwork in order for that.
He is losing 1 1/2 lbs a week now. at 126lbs right now, in march before I broke my ankle he was 145.
They say he is also more violent.
He sat with his eyes closed, looked up slightly from the side of his bowed head and took my hands and held on.
Rubbing his back hurts me, it is all bones sticking out.
He then put his hands on this back as to make a cushion there.
Nurse said he is not in pain, I think he is what does she know.
They had short sleeves on him, he is always wearing long sleeves, he is always cold so we changed him.
He has a new room mate, a luny bin, sorry, named Moe.
I am angry, I am hurting, I do not know how to handle all the emotions right now.

Zack came with us. He is a big boy with a soft heart. It looked like he was afraid to touch this tiny man.
Paper work finally in order, more costs for lawyer.
I am a rag today.

Bobby started to show me the beginning of the film....basterds.
The first scene at the Frenchman's house became my film, the girls looking out from the clothe line and see them coming, the interrogation became my story. I may sound like a drama queen but the film totally changed to me standing there, the house being searched, drawers being opened , men with ugly faces, ugly uniforms, men I had learned to hate.
Me standing there looking at the regulator clock, knowing my dad's gun is in the bonnet of the clock.
If they find that, I was told, we will all die immediately.
My 8 or 9 years have not taught me that I should not stare at danger.
The sound of the boots on our bare wood steps are loud. Their language is loud. I hate it.
Father is talking in German to them, my mother is frozen near the stove, rubbing her hands or folding her arms.
Her eyes get grey when she is angry, they are almost black now. I worry when I see that look, it is usually for my benefit when I did something wrong.

They leave satisfied that there is nothing here and they did not like this house to move into.
My father, a cop, (without weapons during the war) must have done some fast talking. He knows them, he was 7 when they invaded Belgium and his father was taken as a prisoner, leaving his mother with 8 children and no food.
He had learned early to steal in their camp and bring food home. He knew too much about them.


The day at the nursing home, the lawyer, the doctor, now the beginning of the movie and I was, am still, a total wreck. While this is going on in my old head my child is having issues in her marriage and can't stop crying.

I go to bed wondering why I had to stay alive, I was in real danger for so many years, so were my parents. They managed to end their lives in peace and quiet and some contentment.
I just do not like the way mine is going right now. I am fucked up today, plain english just fucked up and fed up.

Lunch on Wednesday

an email arrived,
said my friend:
we want you to join us Wednesday for lunch at the cute little inn on Howard street.
 We are celebrating.
I answered : Celebrating what?
He answered : Celebrating Wednesdays!

How lucky to have friends who celebrate Wednesdays!!!!!

I love it.

word for the day:

nesting

simplify

painting

hot as hell summer

delay vacation

back to nesting and painting

no time for writing

Cheap entertainment

and I mean cheap.
Big Brother started again.
I know it is the most stupid show around but I was curious who was going to join this year.

It was entertaining (?)this time they have a few people with brains , one guy member of Mensa and another with a PHD etc....then there is a Jewish guy who wears a yarmulke , quite religious and only eats Kosher and will go home quite skinny, I am sure.
Then there is the Vegas girl with boobs much larger than Dolly, she does not need to swim, she floats.
She announces on the first evening:"I am just not a stupid bit boob girl, I have brains too. Oh did you see that we have a Jewish guy here, he is wearing his Yom Kippur.".
OK, she could have called it a mitre .

Sometimes it pays to shut the mouth!!!