Jury Duty For A Caregiver

Jury Duty For A Caregiver

(Written Feb 9, 2012)

Got my notice to be a standby Juror. Called in each day to see if I needed to report. Got the number to call to see if I could be excused, even though I would love to fulfill my civic duty as a juror, but I'm caring for my wife who is bed-bound and has Alzheimer's Disease.

I call to see if I can be excused and I explain my situation. The woman asked if I work outside the home. I say no, I am currently unemployed. The woman said ok, fill out the form you received and indicate you are unemployed and get a doctor's note. Ok.

I call the doctor's office. We can't write you a note to be excused because we have been told we can't excuse anyone, everyone has to report for jury duty. I told the doctor's office no, that is not right, I was told by the county clerk's office of jurors that I could in fact be excused. Oh??? Yes. Ok, we'll have the note for you on Monday. Ok thanks.

I call the office of jurors again and told them what the doctor's office said. No, she said, just send in the doctor's note when you get it, along with the jury summons that you filled out and indicate that you are unemployed. Call us back to check that we got the information.

I almost wanted a confrontation with a judge to tell them you folks just don't get it, and if you fine or imprison me, then you will then take responsibility for my wife's care. OK??? See how that would fly.

The moral of the story, never take NO for an answer!!!!

What Valerie Remembered on Ash Wednesday

What Valerie Remembered on Ash Wednesday

(Written Feb. 23 2012))
The first few times Val did not know who I was, or remembered my name were really hard to take. But it pales in comparison to when she has lucid moments and realizes that she is not well.

Last night I was finishing up the laundry and had dinner prepared for Valerie. I was running around getting ready to sit with Valerie and then Sylvia, one of our aids started to give her dinner. As I was coming out of the kitchen I heard Sylvia call out Valerie's name. Whenever I've heard Sylvia call out Valerie's name like that I get anxious. Like the time Valerie passed out while sitting on the commode.

Sylvia looked a bit shaken as Valerie had closed her eyes for a few seconds. I asked Sylvia what was wrong. She said Valerie looked at her and said , “I'm dying”, and then closed her eyes. Valerie opened her eyes, and started eating again. That to me, is more heartbreaking than anything. And more than just a little be scary. Did Valerie mean she was dying now, or knew that she had a terminal illness?

There are some many moments in each day where Valerie will say something I can understand, but given the advanced nature of her aphasia, it is sometimes quite a challenge.

I had just come home from 4 0'clock mass at local parish. It was Ash Wednesday. I got ashes and went home and wiped some of my ashes, and put them on Valerie's forehead and told her that God loves her and I love her. I don't know if that was kosher as far as Catholic theology is concerned, but I didn't care. Val once told me she did the exact thing for her sister when she was a little girl and wasn't able to go to church on Ash Wednesday. The local parish does send one of the priests on Sunday so Val can take communion. They aren't as consistent as I'd like them to be, but they do come. They forgot maybe?? Is sacramental dementia a sin of omission? A venial sin? Or is a mortal sin?? Well, I know I have to do many things myself to care for Valerie and I'm not going to wait for Godot to show up. I took the sacramental bull by the horn. Valerie's faith traditions have always been dear to her. I'll go to confession I guess. ;>)

"Remember, that thou art dust, and to dust thou shalt return" Valerie remembered that on Ash Wednesday. Of all the things to remember!!!

Physical Therapy

Physical Therapy

(written March 20, 2012)
Since Valerie has been in a hospital bed since last July, we have had Physical Therapy for about 4 months on and off since then. It isn't that she isn't physically able to walk, the problem is she seems to be afraid. She is very stiff on her left side and the doctor's never considered she may have had a mini-stroke. What they said was that it is probably more neurological than vascular. Not sure myself, but she has been keeping her left had clenched and only relaxes it when she sleeps. We do range of motion exercises but she seems to not want to focus, and I don't know what benefit there is to having her get physical therapy since she is so resistant to anyone helping her sit up and try to stand. She actually pulls back.

So, we got PT in the home again, and he seems totally resigned to the fact that there isn't much he can do. I don't know what to do, but I don't what to give up.

Can a couple live in New York City on $1,159 a month?

http://www.norwoodnews.org/id=6806&story=be-healthy-wednes…/

(This was written March 22,2012)
Can a couple live in New York City on $1,159 a month?

Please see the article above...

That's what Gov. Cuomo expects those of us who are caring for an ill spouse at home to do. Let me tell ya something, in New York State, we can't. But we may have to if we have Medicaid in place for the spouse who is ill. In our case, of course it is due to Alzheimer's Disease.
To get some background I will quote from the article: " For years, those caring for an ill, disabled or elderly spouse at home through the public insurance program have been able to protect their savings through a provision known as spousal refusal — which allows someone to separate their income and assets from their partner who needs care in order to meet the strict income limits required by Medicaid."

That was part of our estate planning. I knew that I would have to do that.

One way to avoid this would be for me to divorce my wife Valerie. I won't do that. It is a holy sacrament and I will not break my vows for this Governor or anybody else. But that is the gun that may be pointing at my head. Do it, or else.

We are already near poverty, I lost my job and our savings are gone because of the cost of this disease.

They say that this will save millions of dollars and will help to fight fraud. Let me just say if you go after the folks who are involved in the fraud, prosecute them, then those of us who need the help will get it without all this nonsense. And if we force people into facilities, that is going to cost even more! So how does that save money?

I personally was investigated for fraud after I had applied for Medicaid for my wife. We had not yet even been approved for Medicaid yet. But someone in the government thought we had and wanted to investigate me for fraud. How about the government getting their act together first and go after those who are really defrauding the system. It seems that we who are doing what we can for those we love are being treated as criminals because the government does not have the capacity to go after the real criminals. That is prejudice.

We went through the whole medicaid re-certification process and Valerie was approved. I spoke to the guy from Medicaid about the "Spousal Refusal" and sent them all the documents they requested. A higher spend down was calculated and they want to "meet" with me about the "Spousal Refusal" form I filled out. Yes again.
Funny how people were telling me over and over again, just get Medicaid and everything will be fine. And one of these friends actually works in a local government office here in NYC. How much people don't know or understand about all of this is scary. It is not easy, and no, everything is NOT going to be ok, which is why I didn't want to go down this road until I had to. Then I had to.
This is part of the budget process here in New York that from what I understand, should be completed by April 1 of this year.

So my future may look like this... Divorce Valerie or live in poverty. Decide to not have Medicaid and care for her without any help. Or just put her in a Nursing Home. But I want to care for her, and have some help at home. Is this really asking all that much? Why am I, and my wife being punished and put through every ringer in the book because I have the audacity to actually want to care for my wife?!

The easiest thing for me to do is just place Valerie in a Nursing Home. Why don't I just do it? I don't have a criminal nature, but those that do, will probably still get away with their crimes. It seems however, that the real crime against the state, is doing all you can to care for your loved one at home. I put my job on the line for my wife. I eventually lost it. I've put everything on the line for my wife, and couldn't care less if I lost all the material things I own as long as I can care for my wife and give her the dignity she deserves to let her live in her home as long as possible. Why is this considered so wrong?

And why are there so many barriers in our system that make me jump through hurdle after hurdle to do right by my wife? For those who cannot care for someone at home, ok, there may be the need to put them in a facility because there is no other choice. But what about those of us who want to do it, who just need some help? I'm not saying it is easy. It is hard. So? Many things in life are hard, are we just going to give up?

I mean really, Mr. Coumo, would it be easier for you if we simply both committed suicide? That is not as an outlandish question as it seems, but that's what would save money in the budget now wouldn't it?? Again, that is not something I would ever consider, but the amount of crap I have had to go through just isn't right. And if I have to, I will let them drag my butt to court. This has got to stop! What are they going to do when there are more millions of people in the next 10 to 15 years who will be diagnosed with Alzheimer's Disease and will need help? I mean do you want to just kill them all? Don't think that is not a serious question, as it is the logic of their position and their insensitive manipulation of the common citizen.

All of this takes me away from caring for my wife. I hate that!

Medicaid - A Dire System In Need Of Reform Or How Do I Get These Folks to Give Me 2 boxes of gloves???

I"m going to be posting things I've written over the years so I have a record of our journey.  This is from May 1, 2012.


My wife Valerie is on Community Medicaid. We get supplies from a local Medical Supply Store. They were only giving us one box of disposable gloves. Valerie is bed-bound and needs to be washed up and cleaned several times a day.

So I went over the invoice and saw that we were getting 300 Disposable under-pads. (the blue chucks.) We don't need that many, so I called in the order and asked if they could reduce then 300 blue chucks to 150, and give us a 2nd box of gloves. I reasoned that I would be saving the system money and getting the supplies that my wife actually needed.

The answer I got was "No, Medicaid only allows you to have 1 box of gloves." But they did reduce the number of blue chucks to 150. Now the blue chucks under-pads protect furniture, the bed, etc...which we have to wash and clean anyway. Disposable gloves are used as protection against pathogens from the client entering the home care aide. So, what is more important? If you said the gloves, you're right.

Not only is Medicaid not being fiscally responsible in regards to this, but they are also promoting the pathogens to run wild, unless of course, the patient's family pays out of pocket. Now, this is a small thing, a 2nd box of gloves. But I was STILL SAVING MONEY by requesting a change in the order to the medical supply company and I was getting the supplies that are actually needed and go to the core of what medical systems are supposed to do!

Now this is one small example of the system that needs repair, multiply that by the tens of thousands of people who have to deal with other issues more monumental. And I'm not even going to bring up the fraud that wastes money, I'm talking about every day, mundane stuff, that should not even be something anyone needs to worry about, but here I am, stunned by the inane rule that is simply driving me nuts!!!

I've written to my representatives about this, and if I have to, I will make them change this rule and any other rule that wastes money and does not meet the needs of the patient.

So in the mean time, I'm getting help from friends to help me get gloves and I am also spending more out of pocket for things Medicaid, Medicare and our private insurance policy do not cover. It seems they do not understand that preventive care is cheaper than waiting for someone to get sick!! It is a slap in the face and a baseball bat to the head especially when it comes to people with Alzheimer's Disease as so many things are NOT COVERED! So you go broke, which is where I am now, paying out of pocket for things my wife needs. So it isn't simply government and private health insurance services, it is the whole culture of Health Care that we have to change. I'm going to do my part, you should do yours before you are in my situation!

I Am Not Spock… But I Am Spartacus!

Someone once told me I was not being logical to care for Valerie at home.  We exchanged notes, here is part of what I said. This was 6 1/2 years ago while I was trying to get Medicaid and In-Home Care for Valerie.

I was to lose my job 1 month later….

"Thank you for your note. You've raised some very important issues.

I am not going to be able to afford the lawyer unless he is will to do this pro-bono. So, I will probably appear before the fair hearing on my own. There are no assurances either way. I know that, and I accept it. And we are broke. But I am very stubborn when it comes to getting care for my wife. I know that a nursing home is a distinct possibility. However, until I try every alternative, then I will feel I have failed my wife. I should not have to do this. And yes it isn't fair. I accept that, but if I can fight an unfairness, then I must try. Is what I am doing logical? Probably not. I am doing this because I love my wife. It is all, pure emotion. Pure devotion.

It is possible that it will affect my health? Yes. Is that fair? No, but I am willing to go through this as long as I am able. Is it possible that my health will get so bad that I pass before my wife? Yes. Is that fair? No, but it happens all the time. I am willing to die for her, if I have to. Is that rational? No, and I know it.

We don't value self-sacrifice in our culture. I do. It is more important than me getting on with my life. There have to be things you are willing to sacrifice or we are just marking time in our lives. Is this something most people would do? Probably not. I am completely aware of my irrational love for my wife. She is a much better person than I am. She deserves better.

 I am going to resubmit the M11Q form that will document my wife's physical and medical needs. It may be as simple as that and we will get home care through Medicaid. I am more than aware of the issues you brought up. I'm glad you did, I need to look at this from many angles, and sometimes I can't, so thank you for making me consider all that you brought up.

 And the loss of sleep has not made lose all sense of logic, but I am more determined that I have a right to fight for my wife in any way that I can. If you knew my wife, the way I did before she got Alzheimer's Disease, you'd say I wasn't doing enough for her. Guy - Maybe the last irrational man living. ;>) "

06/01/2011

I Gladly Lose Me To Find You

I love my wife, more than anything... The song Bargain by the Who, describes what I will do.... so don't fuck me with me! 

To win you I'd stand naked, stoned and stabbed

Bargain!
To find you I'd suffer anything and be glad
I'd pay any price just to get you
I'd work all my life and I will
To win you I'd stand naked, stoned and stabbed
I'd call that a bargain
The best I ever had
The best I ever had
I'd gladly lose me to find you
I'd gladly give up all I got
To catch you I'm gonna run and never stop
I'd pay any price just to win you
Surrender my good life for bad
To find you I'm gonna drown an unsung man
I'd call that a bargain
The best I ever had
The best I ever had
I sit looking 'round
I look at my face inm the mirror
I know I'm worth nothing without you
And like one and one don't make two
One and one make one
And I'm looking for that free ride to me
I'm looking for you