Sunday, December 30, 2007

Wet, wet Sunday

Wet but we need the rain.
Unfortunately I was without a ride to work so I had to walk in the rain.
I love to walk in the rain but somehow when one is not in the mood and
the shoes are getting wet and I have to be there in takes on a different less romantic tone.

I believe that this is the hardest for me in this adventure in our life.
Bob had to stop driving. For the safety of all of us.
It was a very hard decision that I made for him.
He has not forgiven me yet.
It has been 3 years now.
I do not drive so now at 75 I have the regret that I could not master this simple chore.
The truth is that I probably would have killed myself by now.
I drove for 4 years in my younger stages.
I was always frightened and I was never comfortable while driving.
I drove barefoot, I needed to feel the peddle.
I drove with both feet, ready to step on that brake but I know that is dangerous too.
I have directional problems.
It takes me a few seconds to know where is left or right.
It is a form of dyslexia so in my heart I know this was not for me. to be in a small town without a car is extremely difficult.

I have good bosses they make sure I have a ride to and fro except for week ends
when we are short of help.
Today my boss was very ill at home and the other one on vacation.
I could not get a hold of daughter nr 1 and I walked to work.
I arrived slightly soaking even with my umbrella and I hope to stay away
from a cold as I sneezed all morning.
Guess I will hurry to the Juice Plus for help.

Asking for help is my hardest problem in life.
I want so to be self efficient, self supporting, asking for anything just hurts.

I have a friend who is in her 80's and I have known her for 25 years and she never
had a problem asking for whatever she wants.
Yes, she becomes a pill but she does not seem to know that.
It is, get me this and do that for me and on and on.
I shudder to think I would become like that.

So giving up the wheels in this household was just devastating.
Bob tells me I took his car away, his license etc...
he gets mad even now and I am lost with0ut his driving me as he
always did with so much joy.

Saturday, December 29, 2007

Clothing for Alzheimer patients

For several years now Bob has a different view about what to wear.
In summer I constantly had to tell him to wear short sleeves so I finally hid anything which even had an inch of wool in or long sleeves.
He just does not comprehend what to wear for what weather.
He also dislikes now : heavy coats , shirts with colors, sweaters with designs.
He wears mostly dark blue and would wear it days on end if I did not hide it to take to the
washing machine.
He wears things inside out.
He will wear 3 turtle necks one on top of the other.
he will wear his watch over his sleeve because he thinks it is an important watch and he is still peacock enough to want to show it off.

We were out of the Namenda for a week or more because a goof up at the VA and I can
see the difference. Back on it, he is much calmer.

Bathing is a big problem in general with Alzheimer patients.
I did not think that it would happen to him.
It did happen to his older sister but she had dementia and had other mental problems.
I beg, bargain, barter, scream, back to begging for him to take a shower.
Last week I just had him undress and gave him a spongebath myself.
He did not seem to mind that so much.
What it is about the shower I have no idea.
Bob was such a clean clean clean person.
He still brushes his teeth and washes his hands after using the toilet.
Shower is another story.

Teeth? He has perhaps 5 left.
His teeth got woprse and worse with the medication.
Or perhaps with the coke he drank. I think the meds.
He refuses to go to the dentist.
He refuses to have false teeth because his mother had so many problems with them.
He seems to remember that.
I fix mushy foods and if we have meat I cut it in very little pieces.
Toto gets them anyway. Toto begs at the table.

I am back to normal hours at the store and glad for that
I seem to nap a lot and be tired a lot.
I try very hard and make it all pleasant for myself.
Redo the lay out of knick knacks and so forth.
Put a very feminine shawl over the bed posts.
Make things my own since Bob does not care.

Bobby said the other day that he is afraid that we are
like June and Johny Cash and we will die within months of each other.
Bob and I have been so close for 40 years, worked together 24/7.
However I have been saying goodbye to Bob for years now.
Day by day I say goodbye.
I have a hard time remembering when he was well.
What did he do? did he make decisions? Did he cook? Did he have money in his pockets? Did he write checks? Did he drive all the time? Did he help me with my flowers?
Did he mow the lawn or did Bobby do it all the time?
I am beginning to forget a lot of the answers to these questions.
I truly feel like he has been the 5 year old who does not remember my orders or how to listen to Mama , I feel this has been going on forever.

I am a survivor, I have learned to survive a lot in life.
Survived the war, I learned how to run in ditches when the alarms came.
Crawl under the bed, the table, avoid windows, it was second nature for me when I was 8.
Survived a very abusive marriage with first husband, not physical but mental , the surviving took years but out of that I bloomed to be my own person.
Survived crippling arthritis which was with me for 10 years.
Survived panic attacks which lasted 7 years.
Most of all survived retail ,which is cruel, never knowing if you will have enough to pay the bills, and living day to day with your uncertain income.
I so enjoy this late in life to have a pay check every Friday no matter how big or small I know I worked X hours and there it is.
I go home after I counted the money and made the deposits for Mr. Stein and I forget the whole store. When I owned 3 businesses at one time I went home and spent many a sleepless night.
It never left me.
You have to be a survivor. You have to stick with it no matter what.
So it is not.
A Day at a time, sometimes an hour at a time.
Sometimes I sob in my office but I am all alone, sometimes I sob at home or call for support with my kids . All I have to say is : I am having a bad moment!
They are there to help with it.
Survivors need help too.

Friday, December 28, 2007

Visit at the VA

So we got up at 6 to get to the VA in time.
This time we did not have to wait 6 hours but left the building at 9.30
Not too bad.
I got a lecture from the doctor who said he was a pro-life doctor.
I had not asked the question.
He seemed annoyed at me.
Bob had prostate cancer many years ago.
He had the seed implants and radiation at the time.
His PSA has shown to be normal till now.
We still did not get the test back when we left but the dr
"thought" there was a very small nodule which could have been from the radiation
or just something hanging around or worse.
I told him if worse that unless Bob was in pain we would not do anything.
I remember how tired he was with the radiation.
The trips every day to and fro etc....
Besides that I also read that they no longer do that for an 81 year old
as this is such a slow moving cancer that most men die from something else
than the prostate cancer.
So I got this long long lecture on how to preserve life.
Did he think I wanted to get rid of my husband? What a stupid a..
this is not a urologist first of all and unless Bob is in pain I will let him have his time
in peace and quiet.
Besides that this dr. did not even have a PSA result for this visit so he only
had to his disposal what he "found".
Talk to me if a PSA jumped from 1 to 6 , talk to me then and give us options
but this was ludicrous.

After all this fasting , Bob was ready for a good breakfast which we enjoyed at
Shoneys with our chauffeur and lovely daughter Sabrina.
In the meantime I only expect good results.

Thursday, December 27, 2007

Getting ready a good night sleep.

Evening has become quite a ritual when it becomes time to get to bed.
Bob checks the doors, all of them .
Ten minutes later he checks the doors again.
Then a barricade is being made for the front door.
A chair, a box, a table, whatever he finds nearby that he can pick up
goes in front of the door.
I did argue with that for awhile because I thought it to be quite a hazard
in case of a fire.
Now I am tired of fighting this so I let the barricade go up.
Some nights it is a BIGGY and some other nights there is just a table.
This routine is nightly.
So he does "remember" on what to do in the evening.
After that he prepares for bed and then we have the routine to see if
tonight I am his wife or somebody who is in the house and he does not want
her to share the bed.
When we sort out that little scenario and he is in his pyjamas
then he goes back into the kitchen and starts to open doors again
and locking them.
He gets into bed and asks me:
Could you check the doors?

Yesterday he did not know who Toto was.
I leave him a list and I am not sure what he can read anymore
but I ask him to take Toto out on certain times.
So he came to me and asked who Toto was.
Often he does not know how to read the time.
Got him a digital clock and sometimes that helps.
Not always.

One has to put humor into these situations or one just dies inside.
I like humor and so I try to inject that especially on my good days.
The days that I have tolerance and I am not on a pity pot.
I will ask him before going into bed.
OK, honey, who am I tonight? Am i your best friend and can I sleep here?
He looks at me and says: of course what is the matter with you.
Then I am relaxed and happy.
When he answers that I should go home then I often just loose it.
Humor, bring on the humor, do not loose anything!!!!

Tomorrow is a VA day, he has to fast tonight.
That will be a biggy
He does not do well with information ahead of time
Trying to soothe him and get him up early and ready
without food is not going to be easy.
Not that the VA does much, they weigh him, check his leg rash,
take his BP, and give him the same prescriptions as always.

I fergot he also sees people around at night and I have to send them home
before he locks the doors.
They gave him anti psychotic meds which is what they give Alzheimer patients
anyway. He had side affects of diarrhea so I do not give them to him anymore
and I just tell the "people" to go home.
So far it is working.

Tuesday, December 25, 2007

Happy Holiday

Well, Christmas is over and all went well.
Had a nice dinner with the girls and grandkids, it was quiet without the 8 year olds.
They were in Texas and Winston Salem.
Cuban roast was very good and nothing was very disturbing to Bob.
He knew who I was all evening so that was a plus.
I am glad all the hoopla which we minimized is over with.
Looking forward to vacation.
One more day to be at work at 7
I guess we are waiting for people to beat the door down with returns, why should we have to be open to do that?
Or? Could it be that we will have buyers with the many gift cards we sold?

I won employee of the month again and got my 50.00 gift card to splurge with.

Good night all time to go to bed and get up early manana por la manana

Saturday, December 22, 2007

This is my bed!

Had a hard night. Bob decided AGAIN that I should not sleep in the same bed with him.
I tried to tell him we have slept in the same bed for 40 years but that did not seem
to make sense to him.

I kept saying things like "we are married" and "I am your wife".
He answered that he did not know about that and if I wanted to leave
I was free to leave.
I asked what he would do the next day and he answered:
work hard like I always do.
Then he had a puzzled look and said :
Everything is so mixed up in my head.
Just sleep on that side (as he showed me my side) .
He mumbled more and seemed so angry.
I could not see the usual glimmer in his eyes.
Clearly he did not know who I was at that moment.

Went to work at 5 am and was concerned on how I would find him
when I got home by 9.
He was all smiles but he did not take Toto out of cage and I had left
a note to that effect.
He asked me what a cage was?
SO that was it he did not remember the word cage.

A few months ago he really surprised me when he pointed to an airplane and
asked what that was.
I said : airplane and he tried to repeat it but he had problems with the word.

Alzheimer, the plaque which grows while our loved ones leave us a thought at a time.

It was hard falling asleep.
I am consumed with feeling so sad for the 2 of us followed by anger and back to
just loving him so much. But the anger in between bothers me.

When we say for "better or for worse" we are usually young and we do not think that there ever will be a "for worse". Surprise , here it is.

For better or for worse, but let me hope that tonight when the covers are being
folded that he knows me and that he is happy to see me join him.
Lets try for the "better" , Bob, lets try it if you can.

Friday, December 21, 2007

Crazy hours with retail

The chase is on. Lets get the mighty buck, so at Steinmart, where I work we have joined the race. We were open at 8 this am and at 6 am tomorrow. What does it mean to me?
I had to be at the shop at 7 am all this past week and at 5 am tomorrow.
I am not a happy camper.

It messes with me because I hardly sleep at night thinking I will not hear the alarm and not be ready in time.

I count the money for the starting drawers.
So I have to be there, usually with one manager.
Who will come at 6 am tomorrow?

People go to Walmart to get the cheaper TV's but we have the same sale all day, why bother to come early, we have enough rags to fit dozens if not hundreds of ladies.
Come on, sleep in, let me sleep in too.

It confuses Bob, I get up quietly and leave before he wakes up.
I am no longer sure that he can read my messages.
I tell him every day what day it is (on paper)
and what time I will be home.
Not sure if he comprehends it anymore.
He did write a sentence for his brother's card yesterday , it was a big struggle.

Well I think I will take a little nap.

Thursday, December 20, 2007

Lets do the Roomba!

I am giddy today! ABSOLUTELY GIDDY!
Son, Bob, busy making robots was joking with me about the Roomba vacuum cleaners.
It did not stop there for me, I decided to investigate.
Bob said that the reviews from a publisher on Robots were amazingly good. Unexpectedly good.
I checked at the factory and read all I could read.
Then I did the eBay thing and price comparison.
These new ones are costly , around 400 bucks.
I do not have 400 bucks to spend on that so I thought this was not yet for me.
I kept doing search hoping some eBay soul would have put theirs in the jewelry category and no one saw it. Yeah RIGHT.
But Amazon had one which was a rebuilt one with 90 days guarantee.
It was 74.00 plus shipping some 80 bucks.
I thought about that for 5 minutes and bought it.
I have purchased a Olympic camera years ago which was rebuilt, I had bought my Dyson rebuilt and all works still very well.
I figured that the factory is not going to do a lousy job when they want the product back on the market.
The Roomba came. I named it "Marie" because all the maids in my native Belgium in the 1930's were called "Marie". So help me they were.
I plugged in the battery and pretty soon Marie was at work in the bedroom.
Cat came around the corner, looked at "it" and scrambled with her back up high.
Toto, our Maltese, came and looked, did not know if he should shake his tail or not and ran into the kitchen.
Bob came and looked and shook his head and he too left Marie working.

I was very skeptical. I have severe Psoriasis, hence I leave flakes all over the house.
Most vacuums do not pick them up. It is like there is electricity in my skin and decides to stick to runs and wood floor.
I finally bought an Oreck, years ago, and it was the first vacuum which took care of the problem. I decided 2 years ago to retire the Oreck but daughter is still using it and it still works.
I bought a rebuilt Dyson and that is simply THE BEST.
So why do I need something else?
Daily vacuuming at this point in my life is not an option, I have so much more to do.
The flakes get worse, psoriasis gets worse from stress.
I see the tiny white spots and I just hate it.
I bought a new bed which does not have wheels and moving the bed to clean under is now a big chore.
In other words at 75 when I vacuum my bedroom and move what I need to move I have lost 3 hours and I am exhausted.
Marie worked her little batteries till the end and had finished the bedroom and the bathroom and all the flakes and cat hair were gone.
I recharged the lady which took about 2 hours and off she went to do the dining room.
Only problem is that she does not like rugs with fringes, she wants to eat them and then gets stuck and she does try that with wires too.
So fringes and wiring got to get out of the way.
People say she is very loud, well, I am quite hard of hearing so to me she just has a murmur.
See there are blessings in some things.
No, I am not retiring the Dyson but I think once a month will be all I will be using it and I
probably will use Marie every day.
How bad can it get, you put it on the floor and leave it do its thing.
I can go and sit and eat bon bons or I can sit and write this silly blog while
the murmur on the dining room tells me she is not on strike, she is working.
Viva Marie!

I hope she lasts and lasts, i checked the new ones which have new features but I do not see the need for them. I am quite happy with what it does now.

There is also a wet Roomba which does hm hm.......................

Good day today cleaning gets done, Bob is fine, tomorrow Christmas party at work.
We are alive and well.

PS No I do not get paid by Roomba for this advertising

Wednesday, December 19, 2007

Christmas crunch time

We had a nice dinner at Sabrina's , a sort of pre Christmas. Peter will not be with us on Christmas eve so we gave him his Spider man stuff early. Wondered how Bob would react. Did a mistake and told him at one o ' clock that we would be picked up at 5.15. Wrote it down. Every 15 minutes after that I had to explain the time and place and why we were leaving the house. I should know better I have done that mistake many times before.
I have to learn to just tell him :Put your coat on we are going to....
Exactly when the car is in the driveway.
Would save me a lot.

At Sabrina's he behaved well even so I saw a slit for a mouth when Peter was on the couch
next to him. He still knows better than to fuss around Sabrina. She tells him off in a very gentle firm way but he knows her. You do not mess with Sabrina.

Off today, feeling better and will visit a nursing home with Peter to give some small
gifts for the elderly. I think I will also add my mom's scarfs.
They are new as she collected them and I have been "saving" them since 1993.
Peter was singing with his school mates at 2 nursing homes yesterday.
That made me quite content. I could be there tomorrow and Bob too.
One never knows. I am not inviting that thought , I am still thinking I have just turned the corner of 50.

This year I have no Christmas spirit whatsoever. It is another day on the calendar.
I asked Rhonda if we can find a place to go to midnight mass.
We were thinking some Episcopalian and Catholic church which has more
traditional stuff going on like when I was a kid.
We shall see. Staying awake will be another matter.
And how will Bob take it?????
Cant leave him alone at that hour.

Monday, December 17, 2007

so what if you are sick

Monday, and I became ill at work. Boss told me to take tomorrow off and go to bed.
Trying to convey to an Alzheimer patient that you are sick is near impossible.
I will crawl in bed and Bob will come every 5 minutes to shake me and ask if I am OK.
He just does not remember that I am in bed for a reason and he cares still so much
that he worries when he sees the unusual. Having me in bed in daytime is not programmed in his mind at the moment as anything but meaning trouble.
So off I go and try it anyway.
Sudafed anyone?

Sunday, December 16, 2007


Wind storms expected today.

Yesterday I had to be at work at 5 am so I was out of sorts all day.
Got some neat toiletry presents on sale at the store so I can finish
my project to give at the nursing homes.
The need is there as it is for children.
So many of the elderly have been put on the shelves, it was not so in my
day , we thought the grandparents knew everything and were there to
protect us.

Yesterday was neither good nor bad for Bob, Peter visited for a few hours
and that agitated him some but otherwise he was fine.

When the winds come today he will not be a happy camper, BUT he loves to sit by the window and just look at the branches swaying.
Watches the birds at the feeders.
Let's have a great Sunday! (I am telling myself!)

Friday, December 14, 2007

Coffee or coke?

That is my question when we go to a restaurant. For the past 2 visits I noticed that Bob did not respond very quickly. I started to think that he no longer knew the difference.
Then I happened to notice that at home he poured a glass of coke and added milk and sugar and ran for the microwave , so I stopped him and tried to explain.
He had not a clue what I was talking about.
So another small set back.
At the restaurant then daughter Sabrina said, something cold or something warm?
He did not have to think about that one, he immediately said "cold".

Visited a friend who 2 days ago lost a leg.
Bob never noticed the leg missing.
He was however full of compassion for the sick man in the bed.

One has a hard time to understand what must be going on in his mind.
Is he better of because he does not see nor hear reality any more?
Or is he struggling hard inside his being to trash out the confusion and is he hurting
because of it.

Or are we, the care givers, the ones who are constantly in pain about this disease.
I went to an Alzheimer meeting and one lady said she was happy when she discovered she had breast cancer. I thought it very bizarre but so many years later I am starting to understand.
This lady needed a rest and she thought her only way out was with being sick.

Overall today was not such a bad day.
So we will watch it when he pours Coke.
least he knew he was thirsty.

The tree saga continues

If you know someone afflicted with Alzheimer then you know that any change becomes a small or large drama.
The Christmas tree is that to Bob.
I plug in the lights, he follows me and unplugs them.
Peter came to continue to hang ornaments and Bob pushed him quite hard
into the ornament basket, lucky for Peter and my ornaments he stumbled into a chair.
Bob announced : children should not hang ornaments until they are 15!
I fergot to keep my cool so I answered something about 15 year old boys and girls.
I lost it...again.
I know better. I should stay calm.
We can "should it" ourselves every day.
Staying calm and know the reason why is not always in my agenda.
Peter and his mother vanished quickly to their own house.
Tree left half decorated.
Me huffing and puffing because I thought we'd all could go out and have
a nice dinner out.
It was not to be.
Bob sat in his chair waiting for food.
I just threw some cottage cheese and peaches on his plate and went to sulk
in my office.
Another day with Alzheimer who is not becoming my friend.
After 10 years you would think that you get used to it.
Later in bed , Bob, took my hand and kissed it many times as he always does
he did not remember a thing and I shook my head and told myself how stupid
to get excited about little Peter being pushed by Grandpa, guess he was pushed many times in school that day.
But this is Grandpa, it is not right but it is going to happen.
Deal with it, Jeannot

Thursday, December 13, 2007

Christmas after all

Thursday Dec 13 2007
I am not in the mood for Christmas , not the decorations, not the lights, the simple , simple, Christmas dinner with the kids would make me happy.

I do not know how much Bob remembers of the Christmasses in the past.
He really, really was a Christmas nut.

Knock on the door and there before me stood a REAL Christmas tree.
Peaking behind the branches was daughter Rhonda.
She is the romantic in the family.
She is all about flowers, colors, music, writing, angels, the knight on his white horse...
the whole nine yards.
So she figured that I NEEDED a Christmas tree.
My heart sank.
I so wanted her to walk out with the tree and say :I made a mistake.
Not Rhonda.
She said that I looked at her tree and I looked sad, hence Mom needs a tree.

So in comes the tree followed by Grandson Peter who brings me 2 pots of
pointsettas, flowers I just LOVE so that was well received.
I tried to be very nice about the tree and not break Rhonda's enchantment
about it all. I keep thinking of the money she spent on us that she needs.
I think I managed a smile.

Bob follows the people and the tree from room to room until we decide on a
corner. He frowns. He sighs. This is not in his schedule.
Rhonda announces that it is her responsability to keep it watered , decorated and
take it down. We are just to enjoy.

So I start to relax, OK, I can handle that. No work for me and a few lights.
OK I can handle that much.
I bring the box of ornaments and Peter starts to decorate.

I fix dinner.
Bob sits by the kitchen table and does not look happy.
He has problems with Peter's rapid movement of an active 8 year old.
Peter comes and gets Grandpa and gives him an ornament,
he shows him like you would a 3 year old on how to hang the ornament.
My heart sinks.
Peter has a very good heart , he is starting to know that Grandpa is a child
in may ways.
Bob puts on the ornament and is very choosy about where it goes.
The artist is still in there.
Peter gives him 2 others and after that Bob is tired and walk away.
But not so fast.
From the kitchen table he checks up on Peter and then decides that he
should direct the traffic of the ornaments.
Back in the dining room he goes and starts to boss Peter around.
Put this there, no does not look good here, no there is better.
Now Peter figures that he did not bargain for orders so now it is Peters
turn to pout.
He protests and says"I know where they go Grandpa!"

Christmas tree is up and running.
OK I will enjoy that but THAT IS ALL for Christmas decorations!!!!!

Bob goes to bed tired his medicine has not arrived yet from the VA hospital
they take forever even when we called twice.

His allergy is back up and eyes swollen because he had to supervise the
leaf blowing and that only brought back a spring allergy from pollen.

He does not "see" people tonight so I did not have to chase out the invisable kids which come in the evening and run all over the house.
At first I would argue with him that no one was there.
That would only aggravate him , i have learned to stay calm and just
say things like : I just sent them all home.
He is happy with that statement.

We made in for another day, I feel it was a good day and we are blessed by our children.
I could not be without them.

Other people have it so much worse.
An in-law, a giant of a man, had to have his leg amputated today.
What is odd to me is that one of his wives had only one leg and he
used to tease her, karma around here????????????

Life goes on.
Weather 74 degrees in NC and it is almost Christmas

Wednesday, December 12, 2007

Daily journal, coping with Alzheimer

I am a mother, grandmother and now a caregiver which is my biggest job yet.
I was ill prepared for this. I am not the "nursing type". So guess what?
You learn pretty quickly.
Posting this blog mostly for anyone interested in the disease or could perhaps get
some help from my experience and visa versa.

We are ten years since the diagnosis.
Husband, Bob, has been and still is the love of my life. He is a rare peach of a man.
Has a great soul and love in his heart.

At this point he walks our Maltese dog, Toto , around the block.
Dries the dishes and sits in his chair falling asleep most of the day.
Refuses to lie down and be comfortable.
There are days that he knows us , the children and myself but he does forget
our names.
Sometimes making a sentence is impossible for him.

I work part time and I can still leave him alone for 3 or 4 hours but this too
will come to an end soon. I think in a few months I will have to give up my job.
I am an auditor and keeping busy with the figures for these hours is a blessing.
All other reality leaves as I count the money in the store.

I am 75 ! going on to 76 in a few months.
That is it for a beginning on my blog