Thursday, November 19, 2009

November 19 is this spring?

It is balmy outside, feels like spring.
One wonders why the leaves are still falling.
There should be new ones up there.
Enjoy while we can, we all know it is coming.
at least this too will help with heating bills.
Walking the dogs was a real pleasure, I did not
feel like coming inside.
Of course I still have oodles to do before the work
begins on the house.

I am looking forward for next week's outing.
Rhonda has invited me to the employee Christmas party
inside the "house" with a dinner for all and presents for
The "house" of course is Biltmore House in Asheville.
The grand old dame is decked with thousands of lights, Christmas trees and decorations.
Two of our own creations are on display there.
Commissioned in the 1980's by the staff, we made old Father Christmas figures with Victorian toys and fabrics.

I have been there in the summer for employee parties but they are outside. This time inside will be a great treat.
They do not skimp on the food either.
Biltmore is a great attraction in the Christmas season, it is worth to come and see it if you are close by.

So it will be a fun week.

Yesterday Bob was all confused when he came home from the day care. He wanted to go back on the bus. Did not know the house nor us at all. A few hours later he turned violent put his fist out to his son but Bobby was faster and could stop it mid air.
The whole night he was awake, this had not happened before
so he got up and out, up and out, dressed and undressed and went roaming about the house. Son was up till 4 and watching him. Every time I opened my eyes he was there next to me and staring at me.
I am thinking the new meds took different turn.
Of course they are on trial.
we shall see what this evening brings.

Monday, November 16, 2009

about being blessed

People use the word "blessed" in many circumstances.
It is used too often or when I feel it is not truly appropriate.
Lately I have been getting emails or statements on FB telling me how blessed I am. Blessed that I still have my husband.

Blessed? Really?
Obviously these are well meaning people with a smidgen of and often too much religious fervor. If I was still a member of the Catholic church I would not feel blessed but perhaps welcome the idea that I am suffering-hence there will be a reward-somewhere sometime, suffering is good.....Mother Theresa loved it. OK, I am no longer there . I have fallen from graces or just grew up, I can't remember.

In any case , lets take this apart.
Where is the blessing?
I am truly searching here.
Would you think it to be a blessing if you, your husband, your wife, your mother, your father, your kids, would receive the news from the man in a white coat. The news that you have an incurable disease. Wow,.that would hit anyone between the eyes. But the good man tells you, you may have this for the next 20 years before you die. Aha! Maybe there is the blessing, twenty years , we can handle that.

Not so fast, what if the person would know from in the beginning (most are too advanced by the time of diagnosis to understand) that he/she will be stripped of all control, stripped of their thoughts, stripped of their memories, stripped of all the tomorrows- no matter how long you will live.

What if you understood that you will spit and slobber while you eat? Would you still be thinking of that nice restaurant you once love? What is you knew that slowly the body functions are no longer registering in your mind, you need someone to clean you like when you were a baby, you need diapers.
How would the sick one think that was a blessing?
What if you could understand that the mild , loving person you always have been turns into a violent person, one who hits, scratches, screams. Would that ill person like to become that?

What would anyone think that they never want to be bathed, that water becomes the enemy and you fight with all your might not to be cleaned. Would that be a Blessing? -I think not-.
From experience we know that in that state of mind you accuse every soul around you as being a thief, everyone steals from you. Surely this paranoia can't be a blessing for you.
The stories continue , too many to mention, the years hang on. Near the end you forget how to swallow and slowly forget how to breathe. Would anyone in their right mind tell that person that he/she is blessed?

Then comes the blessings sent to me , the caregiver,because I am so lucky to still have a husband.
Ouch! I still have a husband? Think again. The man who walks here in this house does not know his wife, his children, his grandchildren, not even the dogs.
Often I am told to leave the bed, he does not sleep with strangers. Lately the hitting has started until we needed
stronger medicine, now he is just zombie like with a manic laugh. Everything now is a matter of laughing or yelling, no in between.
I was surprised when my water bill had doubled, why? I asked. It is not from all the showers he is taking, no dear caregiver it is from the daily changes of the soaking sheets towels and mattress covers. That is a pile of laundry every morning. The water company is blessed, the laundry lady is not very happy remaking and remaking a Queen size bed.
No, I would not call it blessed.

I could write a book about it all and not once would I have to admit that this was all a blessing. I do not give a hoot where you find that the word would fit, it does not fit for me nor for my husband who is now a walking stranger in his house.

Sunday, November 15, 2009

Sunday night Nov 15

Two hard days, complicated with the fact that I will have construction going on everywhere in and out of the house
in 2 weeks and probably will for the whole month of Dec.

When Sabrina came to blow the leaves together that already made old Bob upset, he has been re-arranging the piles now for 2 days.

I started to put out old junk for the garbage and he hauled it all back in before I saw him do it.

Week ends are always very hard, I do not have the comfoert of free hours in day care.
Thanksgiving week he will be home 4 days.

I am hoping for a good week to come.

Thursday, November 12, 2009

Someone in Florida lost it....

In the news this week:
A caregiver supposedly killed his father who was afflicted with Alzheimer. Allegedly threw him in the ocean because "he stunk". The man had been a caregiver for some 8 years or more. The father refused bathing (we all know about that one).

My heart goes out to that man.
I read right now he is on house arrest till his trial comes up.
I do think we have to truly start thinking about incidents like these. He is not the first and will not be the last.
I know I came close to just flipping out in several occasions, I had the fortitude to know it was coming and talked to my support group who either came over or talked me into some
state of sanity.
It happens folks, I do not care how much you love the person you care for, there are moments when you tell yourself that you can't do one more chore, one more minute with someone following you, one more item to worry about.

Often after years you have drained your resources on medicine and help, you no longer are the same person.
The sick one is but a body floating about. You lose him/her, you no longer have conversations which make sense.
You no longer can leave the house without someone to take your place. If you are lucky and can afford day care then it is a reprieve for some hours. You try then to think of what "normal" was and try to catch some of this before he/she comes home again.
Vacations are out. Nice restaurants with him/her can be
somewhat an embarrassing situation, the table manners are gone. Trips for your charge to the bathroom can be a challenge , especially if there are 2 doors.
They get lost even in small places, you better be there.
There are so many daily activities which change with every down hill the illness takes away.
It isw never going to get better.
You might think that today Margaret knew you, you love to know that to be true. You see a glimmer in his eyes and you tell yourself "He knows me!". You are still finding hope no matter what you truly know deep inside.

I am told that the research money for Alzheimer is a minimal amount when you compare it to Cancer yet every so many seconds, I think I read 7, someone in this country is being told that they have Alzheimer.
Baby boomers are growing older and guess what? If you have money to invest built day cares and long term care places, we are surely going to need them.

Baby boomers would also be wise to buy a reliable long term care insurance. I could not get it 12 years ago because my husband had prostate cancer so they refused him.
Who has 4 to 7000 a month to pay for this service when you are no longer able. ?

Back to the poor fellow who it is said killed his father, I am so feeling for him. I am so hoping that he does not go to jail.
I am sorry but some bargaining must be able to come to the table. I doubt very seriously that he was in a sane frame of mind.


These souvenirs I found at my friends house in Mass.
My husband is the artist.
He leaves us so many nice memories with the works he did.

trip photos

I am just now getting to some photos from my trip up north.
Friend Lee is 80!!!!She looks 60!!!

Monday, November 9, 2009

true doctor story

Went to the VA hospital.
3 hours before his number was taken care off.
The VA gets you with :"your last four" that is YOU.

An elderly gent came into our waiting room and my patience already at zero - I am thinking: another one before us?
Turns out that he faces Bob and said:Hello I am Dr.......
Say what?
My head is spinning. This is the doctor, he is my husband's age. He does sort of fall against the door jam, dizzy? drunk? what is the problem? I am not very confident on following him with my husband and translator -I have bad ears- daughter.
We tell Mr. Dr. with a lot of experience -maybe_? That our best friend here is often in a hitting mode, especially when bathing is required. We need calming medicine.

The chart come up on the computer screen.
Yup the right number, right last fours.
List of medicine he is taking.
Ask me what they are for, I confuse one with the other so I am honestly telling him that I do not remember which is which.
He gets out of his pocket a mini book with alphabetical listed medicine. Oh! There it is that one is for his B P.
Ok having checked all of the meds.
He tells me via Sabrina that he is prescribing halo------
it should calm him down. Used all the time for Alz.
So we walk out glad to be in the fall fresh air amids falling leaves. Bob does not have a clue why he was there and what this was all about. He tells every one that he is from Santa Cruz.
Well, he did balk, he did not want his temp taken. The nurse could not take his BP. BUT when Dr. M. said we needed some blood work ....then we panicked.
Mr.Bob walked into the lab station and said he was from Santa Cruz, the pretty girl said she was from Monterey and he did not even balk one second when they had to try 2 stabs at finding the right vein. He was Mr Charm.
I sat outside,I was so exhausted and did not want to see him being mean to the nurses. Maybe it helped that I was not there. Sabrina said he was an angel for the needles but then
taking his B P got him angry, go figure.

Once home I ran to the computer to check the meds.
OK I read it was invented in 1957 by t Belgian, that rang well, I thought with some pride.
The last sentence made me sleepless for the next night.
The FDA does NOT approve of this medicine fr A patients.
Furthermore the article said there have been deaths in this group.
Gave him one pill as prescribed and watched every 10 minutes to see if he was alive.
He turned out to be a sweetheart in the next 2 days.
I even washed him and cut his hair. Not A PEEP out of him. ! Oh how I liked that. No fist fight no water fight.

Sabrina called a pharmacist and asked about the pills.
Unless there is a problem with his heart or asthma there is no problem at all, said the man on the phone.
Prescribed all over the globe for Alzheimer.
Good old drug!
OK so we can hope for some rest in the getting feisty dept.

What d o you know for sure

Ellen de G. said in Oprah mag.:
It's our challenges and obstacles that give us layers of depth and make us interesting. Are they fun when they happen? No. But they are what make us unique. And that's what I know for sure…I think.

That gave me some thought this morning and I wondered what I know for is what I came up with:
I know for sure that there is nothing anymore that I know for sure. Absolutely nothing.

Ten years ago I would have given you a long list now the
"for sure" are "maybe's" or " whatever".

Thursday, November 5, 2009

Caregivers week

this email I sent my kids and grandkids for Caregivers week:
This week is caregivers week.
I want to say thank you to all of you, my children, my grandkids, my in laws.
Everyone of you has been a caregiver in one way or the other for dad.
The little ones had to learn how to deal with this new person, had their feelings hurt at times,
did not get the hugs like before. The adults had to say the long goodbye and be there to
keep mom on her toes and in good frame of mind (if that is possible).
The many trips to the grocery stores, doctors, vets, hair dressers, luncheons, castles, gardens,
would not have been possible at all without you guys.
It is all in the package of caregiving, you guys always try to make it wrapped up in velvet ribbons.
I thank you, every single one of you for this journey is a hard one for us and the unity
of this family is among the best I have seen when I compare my peers.

Wednesday, November 4, 2009

good news and bad news

The good news is actually GREAT , end of this month and all of December renovations will start on my old house.
New roof and new heating system (with a/c wow) for beginners. The furnace is totally ancient and the pipes replaced last week are completely filled with ancient rust, do not know how the water gets through them at all.
So out with the old boiler and in new electric pump with a/c.
Hoping to get old Bob out of the house as soon as the workmen come is another job to tackle. He can't handle visitors. Not with grace anyway.

Bad news is temporary but I must be out of patience, I have some canker sores visiting my mouth and I am miserable.
A fat lip to boot and no I do not resemble Angelina even with that new look.
I have hardly been able to eat so weight watchers will be proud of me. But that is not the way to diet that I enjoy at all.
I can't believe that I am acting like a baby, these damn things make me very uncomfortable.

So train my thoughts to the coming renovations and help that this old house needs.