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Wednesday, December 4, 2013

You Never Know What Will Happen In Life

So much has happened since I last wrote in this journal. Mom died. Can't say too much about how she wound up dying only that the medical care she received was quite dismal and with no relief from her pain - she basically wanted to go. We were all with her - we tried our best but when you get almost no help from the doctors who are supposed to know how to treat her pain - it was awful.

It's hard to think Mom's been gone a full year now. She is missed. I like to think of her up in Heaven with her Mom & Dad - Papoo would be showing her all the wonderful plants & flowers that he has grown while up there waiting for her to show up.  Grandma would be fussing that "Nick" spent too much time in the garden!  Miss them too.

I guess this is part of the pain of growing older - you lose people. 

This past year has been filled with a little bit of joy in the form of a healthy always bouncing baby boy named Thomas.  He just turned two and is the apple of everyone's eye.  I think young ones keep us a bit young...or at least you think you are as you chase them.  He spends most of his days here with us as his Mom & Dad work and we are all willing baby sitters.

In October, we learned that my beautiful grand daughter Brittany has a rare form of tumor..called a paraglionoma - it's normally formed near the adrenal glands and causes a flux in your hormones that can send your blood pressure sky high and also your heart rate too.  Very scary. After testing it was discovered that she had a huge one attached to her kidney and another embedded on her spine.  They opted to use radiation on the spine one and surgery for the one on the kidney.  It was a seven hour operation and God bless the surgeon he was able to save her kidney!

The results of the biopsy came back yesterday and it shows that the tumor was cancerous.  So now we are waiting for whatever comes next on how to fight this horror. 

Alisa & John have got to be devastated yet at the same time they must remain strong for Britt and the other girls too.  Hard position, too much stress - thank God they have good friends.  Their friends came together and planned a benefit for Brittany on January 20th, 2014 - people can attend or send money to help her cause.  John has good insurance, but when it come to a rare disease the costs go sky high and insurance will not cover certain parts of it.  So to be able to give her the best shot at beating this thing we need to raise money.  I hate asking people for money but I put it up on my Facebook page - I was amazed over 45 people have shared it to their pages already...and some donations have started to trickle in.  God please bless everyone who becomes involved with this.

Brittany is my oldest grandchild. She is beautiful inside and out. She excels in school, has always been extremely bright. Her dream is to go to Yale College and study medicine - I had told her maybe she will be the one to find the cure for all cancer! I believe in miracles, I am one myself - given what happened to me I shouldn't be alive but for the grace of God I am. 

I want to talk to Brittany, but what do you tell a child who has been diagnosed with cancer? I remember being 16 and thinking I had the world by it's ears, the thought of dying never crossed my mind at that age you believe you will live forever.  I want her to be happy, finish high school, follow her dreams - all I can tell her is that no matter what it is that she needs one way or another we will do everything in our power to make sure she has it.

Monday, June 18, 2012

Seven Layers of Hell....

I thought we knew what we were doing. Really, I did. Mom, who is ninety-one, fell...hurt her back and was in terrible pain. Of course, we called the doctor..who sent her to be exrayed - showed arthritis in her hip and degeneration of her lower spinal column. Pain meds were prescribed something with codine - it didn't help. Ice, heat nothing helped...she laid in bed and screamed.  We couldn't stand to see her in pain, the doctor was useless.  We called an ambulance and she was admitted to Bayfront, a very good hospital downtown.

They put her on Morphine, then graduated her to a pain patch that slowly releases the medicine into her system.  She was in there seven days and they only tried to get her up maybe two times, so at the end of seven days she could not sit or move herself on the bed. One day before they transfer her to a Nursing Rehab they start giving her Oxy-codine...we notice she's a little "off" not quite right. But in the rush of getting her transferred we chalk it up to age and a change in routine.

Mom was admitted to the Rehab facility late in the evening of June 17th...her doctor (let's call her Dr. Irdgas...stands for I really don't give a shit) tells us that this Rehab is her best choice and should suit Mom well. The doctor also stated that she didn't believe that Mom would benefit too much from the Rehab and that she was going to review her staying there on a weekly basis. I found that ridiculous given that she is 91 and had not moved for over a week..to put a week time period on her progress was very insulting. Barb & I got her settled in, left for home.  Next day we took Dad up to visit around 2 P.M. Mom was not herself, she was angry, upset and quite hateful to myself and then Barb.  We questioned the Nurses station as to when she had her meds and told them what was going on.  The response we got was "Oh, her age I've seen them turn like that in only one day..it's dementia"..of course, we found out that Mom had been without the Oxy=codine for over ten hours they had forced her into a physicked break.

This happened over and over...she would make progress in the PT part and get killed in the nursing end of it.  She also had a Fentinal Patch on and three times the old one had not been removed when a new one was put on...very dangerous.  Even with all of this going on Mom did well in PT she stood, she walked the parallel bars, she was able to transfer from bed to wheelchair..the exercises were making her stronger.  Now we proceed through the seven layers of hell....

June 7th....again the nurses do not get the pill into her and they let her go to Rehab in an awful condition.  So, of course, she bites the PT person - thinking she is attacking her when she tried to get her to stand up. This person  puts a call into Mom's doctor and my other sister in Washington state gets a phone call from the doctor's office telling her all about this and that the doctor wants to put Mom in "custodial care" removing her from "skilled (such as it was) nursing".  Barb and I go flying up to the home to find out what the hell is going on and Mom is so off the wall my sister goes hysterical, I go after the nurses....I get the dam pill and get Mom to take it. It took an hour before she came back to her senses.  Yet, these freaks are still denying that it has anything to do with the meds.  


We couldn't make sense of the whole thing...we went to rehab but were told to come back the next day to talk to the director.  We were up at the Rehab every single day for at least 3 hours every day for the last three weeks. Mom made progress from being a vegetable to be able to on Friday June 8th to take ten steps with a walker. To us this was huge.  Not so to the fly in the ointment....the dreaded HUMANA NURSE....she flits around spying on people in Rehab making sure that they are indeed making progress or she cuts them off at the knees..NO MORE REHAB FOR YOU!! Sort of like the Soup Nazi on Steinfield...except when she is called on it all she does is squeal..."It's documented, it's documented!"  Well, we are requesting the documents and they had better hope that their records match ours...because we wrote down each day what she was doing, how she was, what progress she made.


On June 7th we called the doctor's office and got her assistant...the girl repeated the doctor's viewpoint about Mom and I told her in no uncertain terms that we - my sisters and my Dad had to discuss the in's and out's of whether to bring Mom home with hospice care or to leave her in the Rehab for the time being...told her we would get back to them. This call took place at 3:30 PM.  Remember the time, you'll get it later.


We go up to the Rehab on June 7th, can't talk to Rehab so we figure let's see if Social Service is open maybe we can get some additional info there.  Yes, the lady is in, we had to wait for about 1/2 hour for her to finish a phone call. The time is now 6 PM.  We finally sit down and start talking to her she starts to tell us the difference between skilled and custodial care. Hmmm...Mom would be in the SAME room, SAME inane nurses, SAME crappy food, oh but there is one big change..NO PHYSICAL THERAPY!! oh, and by the way..Humana doesn't do custodial..it has to be self pay and it runs estimated $350.00 per day.  Mom's plans calls for 100 days of rehab with a co-pay of $50  per day....we told this woman right there and then "Oh, no..my Dad not going to do this...not when we are having as many problems as we have had" Now get this...we never signed anything in there, the woman never, ever said oh by the way its already been decided to do it...without any regard to your wishes. We walk out at 6:20 figuring we had to talk to Dad.


On Friday June 8th, Barb and I go up to Rehab and met with the director of the Rehab..this woman maintained in agreement with us that Mom was actually doing well and improving with each session. She arranged to have the head of nursing and also the nursing supervisor sit with us in her office and hears our concerns about the medication slip ups.  They were all very concerned and had helpful ideas about meds and such. The head nurse said she was going to send a fax to the doctor suggesting changing the oxy to a lesser pain med.  While we were there Mom was exercising and doing very well.  We tried calling the doctor again and was told that there was an emergency and that the doctor would not be available neither would her assistant.  So our hands were tied as far as reaching anyone.  We figured okay it's the weekend....doctor's office is closed...no orders can be written.


Saturday, Sunday....I took off for my mobile home..it's the second anniversary of Joe's passing and I needed time to myself for memories, pictures and lots of music for the soul.


Monday....Barb & Dad went up every day..Mom is still mixed up a bit, it's hard seeing her like that.  Barb spoke to the doctor's office about getting the back shots from the pain management doctor....nothing else was said to her.


Tuesday, June 12th....I find out that Mom has not been to therapy since Saturday. Checked with the nurses and her record..no new orders had been received. We are, at this point, scratching our heads.  We had gotten a call from the woman in their accounting office so we proceeded to go down there.
This woman hands us a post prepared bill, showing $900 up until Saturday the 9th and then under it a monthly charge of $7,200.00 for custodial care! Can you say WTF? I did.  And I normally do not curse..this situation called for it.
We explained everything precisely as they happened and she said No that is not how it happened....I have a paper documenting exactly how is happened and all of this was explained to you and YOU agreed to it. I said "What paper, what the hell are you talking about?" We never, ever agreed to anything..with my sister concurring.


The woman is sitting there holding a piece of paper, I asked her aren't we going to get a copy of whatever that is since we never saw that document to begin with.  She says to me, doesn't matter you gave verbal permission according to this...again I ask for the paper, again she does not give me a copy to read, again I asked this time a little more loudly and my sister wants to walk across her face bigtime. Finally she stands up holding the secret paper close to her chest, she says "ok, but I have to get permission from your Mother to show or give you this paper"....the lunatics are running the asylum I was looking for hidden cameras by this point. We had just explained to this moron that Mom is out of her mind, not able to digest any info or agree to anything.


So the three of us march down the halls, headed to Mom's awful room, avoiding walkers, wheelchairs..trying not to see the unhappy residents of this pitiful facility..a large majority of them just lay in the beds with their mouths agape..just waiting for the end.  No one smiling, no activities....just plain awful.  We reach Mom's room, the woman stands at the foot of her bed and tries to talk to her..Mom reacts as if the devil incarnate had just dropped in...finally the woman just shoves the paper in front of her and says "is it ok for me to give this to your daughters?" You know, doesn't a husband have some rights in this frigging state? Because he is 95 he is being ignored too? This woman pissed me off bigtime. So the woman turns and hand the paper to me....then she says "listen, tomorrow Wednesday the Humana Nurse will be here for a meeting...why don't you girls come up about noon and we can all sit down and discuss this"...so we agree to do that.  She leaves, I sit down to digest this secret paper....what I find has me shocked.  It is a form from Medicare saying  that we had met with social services at 6PM on June 7th.."I met with both daughters this afternoon and they are in agreement to place their mother into custodial care as of June 9th" Then there is a place where it states she had been in to see my Mom and show her this paper at 5:30 pm..(1/2 hour before we sat in her office!) Oh and get this "resident declined to sign the paper just giving verbal agreement"....can you say bastards?

Can it get any worse?  It sure could and did. Barb & I got up early, dressed..we took Dad and went directly to the doctors office to confront the doctor over these decisions. Guess what doctor had decided to take a week's vacation and her assistant was unavailable too. We told the receptionist how unhappy we were.  We took Dad home and then ran up to the Rehab hoping to catch the meeting...we got up there early around 11, went to the accounting office to find no one, another lady said they were in a meeting for all the heads of departments and to come back at noon.  We passed the witch from social services and she smiled, catlike, at us and said "oh, girls I have good news for you...have to run right now but I will catch you later!" Barb & I looked at each other and good news would be nice.  We were so stressed out from all of this...my blood sugar was up more than 50 points higher than it should be and my blood pressure unreal.

Well, we go into Mom's room and the final piece of straw lands squarely on my back....she has another patch on and the old one is not removed. She is beyond herself crying she wants to go home...again the oxy pain pill was withheld for hours beyond what it should have been...I go after the nurse, I get the pill into her. The nurses go right into her face, she feels under attack - I put the pill in her hand, hand her the water and tell her the doctor wants you to take this its important....easy...she takes it. Meanwhile, we are still waiting for a meeting that was never going to take place...I went and sat in the hall outside Mom's room just for a breather.  A rather large and pompous middle woman walks quickly by me, carrying a clip board clutched to her breast. A flash of her badge registers with my brain...I yell out to her.."Are YOU the Humana Nurse?"  She turns, sizing me up and down...I think she was trying to determine if I was a patient or visitor there...because of my walker.
She "Yes, I am" I say "You had a meeting today about my Mom Mary Schick?" 
I start to ask her how could you put down that she wasn't making any progress when out of nowhere the witch from social services rushes to us as if she would be the Humana reps personal defender.  She starts talking at full voice, I answer in kind....I called her a liar to her face over the "secret" paper..she stands there and lies more. My sister hears the commotion and brings Dad out into the hallway.  The Humana Rep looks like she would like to slink away and just keeps saying "it's documented, it's documented"....My Dad, 95 years strong, drew himself up looked them in their eyes and told them..."THIS WHOLE THING IS BULLSHIT" social services says "why Mr Schick what do you want to do?" Dad says "I want her home NOW"!


Social services says I will get right to work on that...I say the doctor is out of town how can you write a discharge? Social services, very smugly, says "Oh, I have their cell numbers I have already spoken to the doctor today and she is upset because you all upset her office this morning!" I really wanted to spit..my folks have been patients of this doctors office for over twenty years and have been treated so shabbily.


So we have her home...she is eating better..she had lost 15 lbs in 12 days there was dehydrated also.  We still have mood swings and depression but we are hoping that we can find someone in the medical field who understands the ins and outs of medicating a 91 year old.


Needless to say, we are kicking this inept doctor to the curb I already have them assigned to my great, caring, wonderful doctor....as of July 1st. It will give me great satisfaction to know that they will be cut from the other doctors list from Humana.  Does everyone know that these managed care programs pay the doctors monthly and the more you don't use the doctor the more money the doctor gets to keep in his pocket? I'd really like to know the dollar amount and times it by twenty years....years where they had nothing wrong with them except blood work....years where this office talked my Mom out of doing anything for her bad knee...not even shots. I'm not even sure whether they did a bone scan to see if she has osteoporosis.


Well, the nursing home, the doctor have not heard the last of this..I have a list of places to call to complain and if I can figure a way for this to go viral on the net ,,I would do it.















 

 

Tuesday, August 30, 2011

Gorgeous Day Blue Skies Clear Cool Air..:)

Such a gorgeous day!....It's as if Mother Earth washed her hair and shook the earth clean. So cool, clear and sunny...love it. Hurricane Irene really did a number on the East coast of the states...everyone is now busy picking up the pieces.

Here, in Howard Beach, flooding did occur - it was just luck or whatnot whether your street flooded or not. Trees came down, people lost power...major thing Crossbay Blvd on one side there is a deep water inlet that leads into Jamaica Bay...the whole thing overflowed for blocks and blocks. All the stores got water into them, they mostly lost power...you could see from the different video's that people took the cars had water up to their windows..
That was at high tide on Sunday around 9 am when the eye hit us...the night before the winds were howling like a deranged Banshee in the mountains. Alisa, mama lioness that she is, stayed up all night on Saturday protecting her flock....worried about the tornado warnings that were posted all night. She was exhausted....trying to entertain the kids so they wouldn't be frightened...this was the first major hurricane they have ever experienced it was unnerving for them. John had made all kinds of preparations for the storm..he put everything in their yard away, harvested his plants...and just made everyone feel safe.
Alisa had tried to get extra candles etc...but everything was sold out...so I made some old fashioned oil lamps....using paper salt wicks, olive oil, my "stones", silver wire to hold the wick and raise it, and several "ball" canning jars.....so Alisa is calling me "McGruber"!! Hey, if there is a way to do it....it can be done.....
On a side note....I am feeling much better, finally got the supplies I needed to do the glucose testing, am learning how to do the insulin shot...each day I am losing more weight....down seven lbs already...am still swollen from the steroids, still on the step down process...surely but slowly. The visiting nurse suggested that I delay flying home till the meds are out of my system....they cause my feet and legs to swell and that is not good to fly with. Luckily, I had taken out flight insurance so I should be able to move my ticket without extra cost.
Yesterday was marvelous...Alisa had taken a vacation day..so she took her four daughters, myself and her neighbors daughter to get haircuts & manicures.....to a place in Brooklyn, the woman's name is Wu...very nice..had my hair cut, permed and colored.....so now I am a curly top! It felt wonderful...with so many it took almost five hours of non=stop beauty treatments lol.....such a day.....

Wednesday, August 24, 2011

Lord What A Difference A Day Makes....

Going to write in blue...cause that's my mood right now. Everything was going along pretty good, having fun with the kids...painting, drawing and jewelry making. Next up I planned to teach them how to crochet and knit....
Last Friday threw me for a loop, I felt a sinus infection coming on last Tuesday, so I had some antibiotics with me, started on them..and watched myself but by Friday morning I was in real distress with my breathing due to the COPD.
It scared Alisa so we went to Mercy Hospital ER and they admitted me right away...I was one step away from pneumonia, which in my case could be the death of me.
Spent the next five days, poked, prodded and pinned...yuck. Got released last night thank God....on the mend. Hell of way to spend a week of vacation this way. Now trying to build back up where I can get off oxygen or I can't fly home easy....also the steroids they had to put me on spiked my blood sugar to 368...bouncing all over the chart for days, I'm on a step down process now...but it's going to take ten days to come off the steroids. So, now I have to be full insulin injections too. Can't catch a break.
In the hospital they put me on a restricted diet, 1200 calories a day...no salt, no chol, no sugar...or sweets. Now when I first felt sick I ate only chicken noodle soup, crackers since last Tuesday...and with the diet restrictions in the hospital...eight days and my weight dropped 1/2 lbs.....sucks to be me. Of course, it's probably the steroids holding water and stuff in....but it would of been nice to see the gauge go down on the scale.
Then, of course, I hadn't had my computer so I missed the Jland Anniversary thing on Sunday....got a lot of catch up reading to do....crap this week better get betterer.....:(

Monday, July 25, 2011

You Can't Go Home Again.....

I thought it might be fun to type in melon..lol...it's kind of a melon day. Alisa & John are both back at work now after a whirlwind vacation. I know the kids loved having the two of them available to them full time...what kid wouldn't?

My grand babies have grown so much..and they are all sooo smart. Brittany has won honors in school and a scholarship to St Francis Prep, a really great school.Top that off with how beautiful she is, she is one great kid. Sabrina is an extraordinarily helpful eleven year old, you almost never have to ask her twice to help out, she's following in her Mom's footsteps learning how to cook from the master chef...and she does pretty good. I look at her and I see her Mom so much it takes me back years. The twins are a hoot....two totally different personalities yet so much alike in appearances. Ashley is outgoing and gregarious, yet does not like to be kissed or hugged too much (wipes the kisses off as I did oh so many years ago lol) Sophia is shyer, not that she's quiet - she can give as good as she gets when playing. I think her feelings get hurt easier than her twin. Both are so gorgeous....I think as these girls grow John will need a baseball bat to keep the boys away......John and Alisa have done a wonderful job raising these girls..they should be very proud.

Thursday, June 16, 2011

New York, New York

Oh I am counting the days till I board a Jet Blue jet and jet away, jet away..lol...always want to say fly away, fly away. I have not been up there for a little over two years and I've missed so much of the little ones growing up. My eldest grand daughter is now 13 and ready for high school! It just seems like yesterday she was a new baby in a bassinet, all newborn pink and squeezable cute.

The twins are just seven and really smart...Sabrina the middle child is a hoot, she never fails to IM me and she is very excited about Grandma Sandi coming back up there. I do expect to spoil them, after all it is my right...lol.....

I am going to bring up all my jewelry making supplies and work with the girls making things I think they will like it.

I also found a cookbook that has some adorable recipes made simple so kids can participate in the process.

I"m also bringing my art supplies up, all of the girls love to draw and paint so we can have watercolor/acrylic classes and I think we will have a tremendous amount of fun for the summer.

It will be a much needed change from the past seven months of trying to help my sister & her husband with his fight against mouth cancer. I think I just need to be around young people for a while, perhaps it will be a soothing balm for my soul....sometimes children's laughter is all you need to feel young again....

Thursday, May 5, 2011

Anniversary

A blue day, write it in blue....Anniversaries are supposed to be happy but this one is not. Joe & I would of been married thirty=two years today, and I look back and it seems to have happened only yesterday. I can still feel the jitters as I stood at the front of the altar, holding his hand...trying to place the wedding ring on his finger as he had placed it on mine. I was shaking so much, no reason for it either...probably lack of sleep, stress and not too sure of the future.

We had good times, bad times and some times that were just that mellow fall in line everything is fine times. We didn't fight often, but when we did it was sort of a stand off...he would bellow and I would bluster...but in the end we never went to bed mad. The minister that married us told each of us that we would at times feel that we were giving 95% and the other person only 5%....it was so true.

I need to write some of his stories down before I forget them, Joe was part Irish but with such a gift of gab you would think he really kissed the blarney stone....I often accused him of doing just that!

I miss him.