Monday, September 29, 2008

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 “

Wednesday, September 24, 2008

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.

Tuesday, September 23, 2008

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!

Monday, September 22, 2008

how did I do in the beginning?

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?

Sunday, September 21, 2008

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.

Thursday, September 18, 2008

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.

Wednesday, September 17, 2008

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

Sunday, September 14, 2008

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.

check it out :

check out Trusera

A lot of information on breast cancer, autism, dementia/Alzheimer is found on this site written by the people who are experiencing all of this at this time.

Do check it out :

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

Friday, September 12, 2008

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.

Monday, September 8, 2008

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:

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.

Friday, September 5, 2008


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.

Monday, September 1, 2008


A new site has come to our attention and I am also writing stories about Alzheimer in their format.
The site covers different subject of health and healing.
How people are dealing with this and that.
It is all from a personal point of view on how we cope and learn about,
autism, cancer, dementia, arthritis and so on.
Every experience from every person can be different but can be a beacon
of light in your own search for answers.

Check it out