Thursday, April 29, 2010

I want to hear my cat purr

Why I ask myself am I so giddy today about the hearing solving problems.
Well, truth is that I have not heard my cat purr in years.

I want to hear that again.
I want to listen to most people and the ones I do not want to hear? Oh Well, I will turn off the volume.

About not hearing:

I did not say in the previous blog that the N.C. department of Health and Human Services has a division for the deaf and the hard of hearing.
There is an office in Asheville and a Mrs.Pittillo was the guardian angel who visited me.
Financial help for devices according to income.

april29 2010

It has been  splendifirous  day.
Not only is the sun shining yet it is still cool. But good news on two fronts.
First Bob was moved back into the behavior wing and away from the night nurse from hell.
She managed to call Sabrina twice late in the evening to announce that Bob had been checking out different ladies drawers and he had been hit twice.
She had also informed Sabrina that she did not like him at all.
A grievance was filed and we meet tomorrow with the committee.
But he is back where he started and a phone call to Sabrina gave us the latest that they are glad to have him back there. The male nurse Bob loves and he lets him bathe him.
Also they have more people on that floor so if he goes into someone's room I should hope that he is being spotted and that someone with EXPERIENCE will guide him away gently instead of starting to yell at him~in that case he will become nasty~.

Secondly a new life line is going to be given to me. My hearing loss and the absence of "good" hearing aids is making my life difficult.
I often do not want to talk because I know I am not going to hear the answer.
This week at the doctor's office I could not hear a word he said. Sabrina had to repeat it all later. NC requires that in these offices they would have a gadget to help the hearing impaired.
I did not know that.
OK OK So I had the lady in charge coming to my home~because of my condition~ and teach me what is available for the hearing impaired.
She had this little gadget in hand and
I could hear every word she said.
I almost cried when I had to hand it over to her when she left.
Anyway the process has started and I will get help.
If I can hear then I can get a better life.
I would like to volunteer at the Hospice store. I can walk there and retail has been my whole life. I have experience in all the facets of running a store but if I can't hear people I will not even start.
So the day is just fabulous.

I also did not walk on the foot today as I did all day yesterday and started major cleaning in the kitchen~by eve I had and still have a weird rash~ son scolded me and said that I over did it and do not take in account that this is a major break and I need to cool it till it all heals.
On to a great tomorrow.

Tuesday, April 27, 2010

Goodbye to a friend

I met Jeannette shortly after she lost her husband. Probably 30 years ago. She worked with me in my shop for awhile. Later Sabrina adopted her as "Grams".
Last week Sabrina talked to her on the phone on her 93rd birthday.
She was jolly and all was fine but today she has left us.
For the last couple of years she was totally bed ridden and life was not that exciting any more but she was still chipper and would still wear her turquoise jewelry while in bed with oxygen mask. Surrounded by the photos of her mother and sister she joined them.
I would say that she had a very nice life, I took her to Belgium with me one year and while she talked about the Eiffel tower all during that visit she did fall asleep in the bus as we drove around it!!!!
We "girls" all went to see the Chippendale and she fell asleep while the macho man was girating in front of her. We had our laughs, Jeannette, we also shed a few tears together.
You go girl and see if you can find some more turquoise!!!!

Dad did not behave well

Sabrina got a call from the nursing home that Dad had been in a ladies room and
rumaged through her clothing.

Seemed like she was unhappy and does not see well so she tapped him and he got angry. Lucky he did not hit her.
It seemed quit unusual for the nurse to call Sabrina at 11PM.
So we went there this a m and we had a list of some small complaints.
The nurse had said:We do not like him here on this floor!
Obviously the big boss was not happy with this and there will be someone now watching out over him as everyone knows you do not mess with Sabrina.

I walked up to him as he stood by the door and said : Hi!
He turned and smiled and said:
How did you get here?
Did he remember I do not drive?
He knew me, no question he knew me.
He took my arm and we walked to his room and sat on the bed.
He hugged me and hugged me and held both hands.
He was called for therapy and we managed to sneak out while he was busy with shaking of the arms and hands.
I said to him: I am sorry you have to be here.
He said: It is ok!
I asked if he ate and he said "if I like it".
Then laughed , he said he had plans for September. I could not make out in the gibberish what the plans were.
I felt that we had a good visit and had
worked on the logistics of his care, well Sabrina did. I am not good at it because I can't understand half of what people are telling me.

2 more weeks with Da Boot!

OK so the doc said it was healing very well BUT not completely on the right side of the ankle. I can start walking on it WITH the black monster ON.
Precaution that I will not hit it on the side and make things worse.
I was surprised when the doctor told Sabrina  that all the hardware in the ankle saved me. Without it , he said, she would never have been able to walk again.That was a shocker to me.
I just figured a break is a break and it will be fine.
I will step with more caution the next few weeks!!!!!Try and have patience.

Monday, April 26, 2010

Lets see what the doc will say

Tomorrow is fact finding journey to the handsome doctor who put hardware in my foot. He is no nonsense and I am a bit apprehensive. I have been trying a bit much to walk on the foot without his permission.
Somehow today (I think) I did a bit much of it for the ankle does not feel so good.
Lets hope that all will be fine tomorrow morning and I get the go ahead to do what I want. Just walk.
Well, maybe that is asking a bit much, maybe, just maybe I should try baby steps.
Son reminds me every day that patience is not one of my virtues~I agree~ but what the heck I can't be totally perfect.!LOL

Family harmony

What is upsetting to me is the fact that for the moment the family harmony is shot.
I should just let it be and know that somehow it will all correct itself.
As a mother of 3 I have this ideal in my head that everyone related should just adore each other. Say what?
Take it from the fact that I am an only child and do not know the sister/brother relationship mode.
Take it that I am a Mom first of all and I want the best for my chickens and I am in  fantasy land and want every one to adore one another.
OK OK So for today I will try and let it all hang out and not let it enter my
own rehab of finding a new life.

a day in the parc

OK so I got to go out in the wheelchair still and in Biltmore Estate and here are some pictures.

The night before Pres Obama came to visit it. He and first lady were here for the week end on vacation.
Grove Park Inn has been there for Royals and dignitaries for many decades, there is also the golf and very good meals.
Obama picked a place , small country place, to stay in line for his BBQ. Asheville people were enchanted with his visit.
Meanwhile here some photos from the estate:

Thursday, April 22, 2010

Deb Thank you

Deb, thank you for posting your experience with Alzheimer.
Many people do not like to face the facts and the signs - my kids did not believe me for 2 years. I just knew Bob so well and I saw the signs very early on.
Thanks for your input.

Spring is my favorite time

Sabrina said that if I had to fall I timed it right for I will be on my feet again-real soon-and be able to enjoy the garden and gardening.
"If I had to fall", of course I had to fall!!
I was not about to give up on Bob but I also knew that I was at my end with energy and I would become ill soon if I could not rest more.
In fact it was getting to be more and more work.
My religious and spiritual friends tell me it was divine intervention.
I lost all my spiritual belief within the last 2 years (much to the chagrin of my girls) had finished with organized religion some time ago but thought I was well grounded in spirituality- there is a difference there-.
It is all gone now but what I do know about the fall is that I had hardly slept the night before, had a sinus problem, and when Bijou wanted to pee I was on
habit mode. I put on my leather coat went out the door like a zombie stepped onto a small patch of ice on the top of the stairs and landed down below with the leg under me.
Broken ankle- how convenient was that?
Now I could sleep all I wanted with and without drugs. I do think I overused the morphine button in the hospital, that lalaland was divine. I did not even ask
where my husband was, I refused visitors, especially my children. I wanted to sleep, I am quite sure at that stage I did not even want to wake up anymore.
It took days before I knew that old Bob was admitted (for a short time) in a hospital.
7 weeks later now I still sit for the last week in a wheelchair with a grotesque shoe. I sleep when I feel like it.
Still a total of about 16 hours a day is
sleeping. I now know how exhausted I was.
I am not sure how to address the future. I had a marvelous handsome, caring, loving husband for 42 years, well lets say the first 30 were absolutely heaven.
I have a hard time remembering him that way , the very ill Bob sticks in my head.
Had a dream the other day and he was young with his heavy curly head, so handsome and so jovial. I was old and hated the fact that he was young. I woke up so angry, I somehow did not want to remember him that way.
I think I can make a shrink turn into a heavy drinker.

Seeing him in the rest home is very hard. Yet he looks like he is at home.
He roams the halls .Looks into bedrooms , lots of help around.
He will not get lost anymore outside,
he will not get the April allergies which have plagued him for decades.
He will get a shower and he can fight with the young fellows, he will not win like he did with me.
I can rest and try and find my new life.
I can't forget about him but I can sleep when I want to.
Right now I still need that.

Tuesday, April 20, 2010

Very hard day

Bob was doing very well at the home, he saw us and did not seem to notice us.
Then when we stopped him and talked to him, he kept looking into my eyes.
Just looking like he so wanted to know more. Stroked my hair and ignored Sabrina. The clock stopped for a few minutes as we somehow connected at another level. Not even dementia can destroy us.
But when we left he said :I want to go home!
Shock! In the past he waved us goodbye or ignored us.
I went out first rolling the wheel chair between all the others in the hall way.
The ladies in this wing seem to have marvelous chats in their chairs and I had to weave in between them as they looked at my Big Shoe and figured what my problem was.
This wing is much better and calmer.
I do not know the nature of the problems with the others but there does not seem to be too many here with Alzheimer.
His bed was still made up in mid afternoon so he does not sleep during the day but he does walk around a lot.
Still does not know where his room is.
A very hard time for me today and yet I have to admit that I can't set the clock back and take him in again.
Sad but for real.

Thursday, April 15, 2010


Now he is in a nursing home.
He does not know when we visit.
Follows the nurse around but lets us be
wherever we are standing.

Loves to see what the nurses have in their cart. He is territorial. He thinks everything belongs to him. (except us)

We visit for awhile and then go out and
cry our eyes out in the parking lot.

Caregiving at home has stopped.
Getting things together for our next visit becomes a habit, writing cards to him with pretty pictures-hoping he will like them - what else can we do?
I always say WE as I need a driver to get to the home.
He does seem to look at the wheelchair but then the place is full of them so probably nothing special to him.

I find myself in such a state of confusion. I am so relaxed now at home, little to think about by myself and planning for the day I can walk again on 2 legs. Son helps a lot.
We talk a lot now. We are learning to joke again and to laugh often.
I am starting not to look at the bedroom door, the bathroom door and no longer lock the back door. I keep reminding myself "it is OK, he is not here".
Then the thoughts begin to swirl , twist and turn. What is he doing now? Who watches him? What can he eat? Can they shower him without medication?

I can't let go of it all,
it is like the happy thoughts and the sad wondering ones are  like hairs mixing and twisting in dreadlocs.
They are so tightly interwoven that they become one big ugly mess.

Then I have to sit down and try to undo it all. Try and reason. Yes, you gave it 13 years, yes, you had to break a promise, it c ould not be helped.
Can you truly take him home when you are on the mend? He has gone so much backwards. 3 Doctors said NO MORE.

So that is where I am right now.
Finished with the work yet still so much
to be done before I return to being me without guilt.

Wonder if it will happen.
I have been writing since 2007 about living with a person afflicted with aLZHEIMER/dementia.

Being a caregiver and all what it entails.
But while you are a caregiver you have no idea how your life is changing.
It is so gradual. It is a slow moving machine, today you may notice that he does not remember to put sugar in his coffee so you help. Tomorrow you may notice that he hides all the bills with his name on so you make a deal with the mailman who does not co-operate.
It all changes so slowly and you change with it.

You start to know that he wants only this spoon and that cup, the others he is not avoiding, why? No reason.

You know it when he starts to hate the small grandchildren, he loved them 6 months ago.

Then one day you find yourself totally lost. You are exhausted. You are in a state of continual fatigue, you can't remember how to relax. You can't remember that you need to pluck the hairs on your chin or try and put on nail polish. You forget dates, birthdays. The seasons blend one after the other and you missed t check out the appleblossoms. You forgot to get your favorite lily of the Valley out of the yard.
You let the birds eat all the cherries, forget the pies you were going to make.
You are being zapped from all energy and the person who is doing it has no idea.
Life goes on and you feel like you are stuck in a time zone but the face in the mirror has jumped ahead and is where it should be 20 years from now.

So now comes a sudden change.....
You fall, break some bones and you suddenly lost your title. No more caregiver, say what?
You are now in the hands of people who are caring for you.
Sleep is a constant companion. You love the sight of a bed even a hospital bed.
You like the food even bland as it is.
You love it when someone holds your hand and tells you that it is going to be ok.
Is it?
What happens to the promise :"I will always take care of you!!!"
Where is he?
Will they cook his favorite dish?
Will he miss us? The dogs????
What will I do without him?

Tuesday, April 13, 2010

April 13 2010

Not a happy camper today.
Going to apply for Medicaid.
I have had good days of abundance and lean days with brown rice 3 times a day but I have not had t beg the government before. Besides that it is my understanding that they will nibble at my house after I am gone. Thus  in a nut shell I am going to beg for the rest home payments of 5800 a month for my husband.
Years ago I applied to long term care and since he had prostate cancer I could not get it.
Now we are in this mess.
If anyone questions the cost of Alzheimer illness then I can tell you that it adds up in a hurry.
First of all 13 years in which he was no longer able to work. First 6 years I paid for the medicine out of pocket between 6 and 700 a month.
Fortunately by word of mouth I found out that he qualified for VA meds and the last year he did get a VA pension which he could have received for the last 16 years!!!The VA does not tell you about this until you ask questions.
Bob did fight in the Pacific during WW2.

So in a bad mood I am going to theMedicaid officer and if I do not like what they tell me I will bring old Bob back into the house till the end.

Friday, April 9, 2010

Friday March 9 I think

Home 2 weeks now and the picture is changing. I am getting much better.
Head is starting to get clearer. Anxiety is starting to fade. Work needs to be done around the house so I get antsy to get up and go.
Visited Bob and he is doing fine, he is cared for and he totally ignores us when we go to see him. When Sabrina left this morning to bring more clothing and say hello he shooed her away. Made
a signal with his hands that he did not want her in his space.
That is the only thing that saves me.
He does not know us at all anymore, there is no recollection. Three weeks ago when he was at ParkRidge and we walked in he would come to us and shake hands , now he is much further in the fog and chases us away.
He is on trial in a very quiet wing, if he does not behave well he will go back to the unruly wing which is somewhat noisy. There is a lady there who sits in her wheelchair and sings to the wall all day. Well, singing is not exactly the right word.
 I am settling into the new life at home,
I can leave out a scissor without freaking out, do not have to hide my rings anymore. I can leave my drink out without it dissapearing , same with Bobby. So many things that I am free off now.
The waterbill was down 1/3 because the sheets were not washed every day in the last weeks.
I can get up in the middle of the night or sleep all night. No more watch dog for a wanderer.
Slept till 10 this morning.
I tire easy but the "shoe" wich protects my ankle weighs 8 lbs. It gets heavy to
keep lifting and by evening I am washed  out.
Today, Sabrina and I had a fun day.
Went to Steinmart to see my buddies and everyone said that I looked so much better. Went to Denny's to have my usual "banana split" . It was heaven.
New plants came into the tent across from Dennys and I had to be rolled into the tent - knowing that tonight there is again a frost warning I decided to just look and not buy.

2 1/2 weeks before the next phase of rehab. My therapist said I was doing so well and I continue the work out so she no longer feels the need for visits.
I am delighted.

A bench for shower from the loan closet makes it so that  I can take a shower now too. Yeah!!!

I invited myself to Sabrina for all the parties she will have next and for all the street festivals I have missed in the last 10 years. I want to hear the loud music, see all the vendors, eat BBQ and perhaps even learn to like a beer.
Stella Artois being Belgian I should try it once.
I want noise, people and laughing around me, I want life again.

A broken ankle changed our life completely, for all of us k"s.
I did not want to give up old Bob, but I knew in my heart that it was wrong because I was becoming more and more exhausted. Sometimes I could not add 2 plus 2. I forgot so much, my head almost always spinning. Vertigo became a problem. I felt I did not want to live another hour and thougths of suicide were constant.
That is all the norm for caregivers of long standing years. We all sound the same, I talked to many over the years.

Now for the time left to me I have hope and I still want to travel as my budget would permit. I still want to be part of the world and be a gardener without my plants being ripped out and watch the
watermelon grow till they are ripe.
All this was no longer possible in the last years.
I have so much still t o do and offer.
I am finally back in the world of the living.
I am horribly feeling sorrow for the end my best friend has to face, the good thing about it- if there is a good part- is that he knows no more - he lost the man he was and become a walking stranger- the time will come that he will look in the mirror and not know who he is looking at. How very sad to end your life that way.
How very sad.

Saturday, April 3, 2010

Porch watching rebirth

I sat on the porch yesterday, it was balmy and lovely, Bob squeezed me with wheelchair between the rattan furniture.
We watched the birds, talked about what to do with yard this year.
It was so nice and calming.
I am getting so used to this 8lb shoe I almost forget it is on.
Son said: Mom you have been home a week now, it will go fast, soon you will walk again.
I was surprised at his comment, I have not been over anxious about the leg, I am still adjusting to the quiet, no demands on me besides the 3 dogs wanting to be hugged all day long.
I am finding a new peace, even on one leg that is just heavenly.

Friday, April 2, 2010

Humor in evrything

When I think of it I was humerous even
on the bed in the ER waiting for Xrays and a doctor.

Asked who I wanted as a dr. (like we have an orthopedic dr in our head all the time) I simply said :
The man with the office across the street, forgot his name but he mended my arm and is so very cute!!
Yup, said that before the drugs hit!
They did get the right man.
Dr. Brooks, your looks got you the job!

After 4 days in hospital I was told that I needed a rehab. Never heard that medicare was going to pay for rehabilitation , I thought that I would hobble on home and try my best.
No, no, said the social worker you need rehab.
I got very frustrated and said:
I only had a little morphine and I promise not to take more of the Vicodin.

I was totally sure that the 4 days of being drugged now made me a druggy for are they not the ones going to rehab?

By the way where is that bottle with the black button, you just push and go to la la land.

April 3 2010

Happy Birthday Meme wherever you are.
I am not giving up on going to Foligno.