Friday, August 21, 2009

Living Wills

Wow! Wasn't Ronni Bennett's idea on having all of us post on health care reform on the same day a great one? It took me two days to read all of the posts and they were all excellent. I was especially excited to read blogs from people in other countries telling how happy they were with their health care systems validating my belief that they were to be envied. They also refuted the lies being told about their medical care.

The more I read, the more I became aware of just how lousy our system is. It is mind boggling to me that there are still those who think it's the best in the world. 'Taint necessarily so' just because Rush or a Republican Senator says it is.

Some of the comments told sad stories about the horrible decisions they had to make when an elderly relative died. I think it's now time to tell my story.

My husband was 62 at the time he had a massive stroke. He didn't have any health insurance and I had to sign a waiver that I would be responsible for his bills before the hospital would admit him. Of course, I did so, and in my distraught condition I couldn't worry about that at the time. A friend advised me to get him in the state medical program for low income (ACCESS), which saved me from becoming impoverished.

Seven months later a tissue biopsy revealed multiple inoperable malignent brain tumors.
After the biopsy, my husband could no longer speak and the stroke symptoms worsened. He was a large man and I could not care for him at home. I was working and I didn't have the choice of quitting. I had no option but to leave him in a nursing home that the doctor had placed him in. (Reform should include home care givers so the patient can die at home. It would be cheaper and more humane.)

He was a prisoner in his own body unable to make his wishes known, talk of his fears, or even feed himself. He had been a vital fun loving man and I knew how terrible this must have been for him. He used to joke that he knew how he was going to die - he was going to be shot by a jealous lover at the age of 99.

Not only did Wayne not have health insurance, he did not have a living will.

In October I got a telephone call from his doctor telling me that my husband had managed to pull his catheter out and had an infection.
He asked me if I wanted him to treat the infection. I knew that without treatment Wayne would die. I also knew that he would want to. But I had to make the decision alone and immediately . It was one of the hardest things I ever did, because, no matter how you rationalize it, you have the power of life and death in your hands. I asked the doctor if he could keep him comfortable if the infection wasn't treated. When he assured me that he could, I told him, "Do not treat it." I would not wish having to make that decision on anyone. I know its illogical, but there remains a feeling of guilt. If Wayne had signed a living will the decision would have been his.

I am sure that everyone who is remotely interested in this subject has heard about Sarah Palin's vicious statement about 'Obama's death panels' and about Charles Grassley 's disingenuous statement about pulling the plug on grandma. This is one of the more despicable lies being spread and I will tell you what is really at stake. (Orrin Hatch failed to denounce Sarah and Charles statements to his shame.)

The right wing won that round. The clause was pulled from the bill.

What they were mis-characterizing was a clause that would have included payment for a consultation between a doctor and the patient on 'end of life' care. A consultation would surely include information and help on drawing up a living will. Having one would spare relatives from having to make the kind of decision that I and others have had to make. That is why I am hoping they will reinstate the clause.

My children will never have to make a decision like I did if I should end my days in a lingering death. I have an iron clad living will and medical power of attorney. I have also discussed my wishes with my children and informed my sister of my wishes. There will be no arguing on what to do between relatives as so often happens in cases like this. I have taken control of my ability to die without machines, as nature intended.

16 comments:

Xtreme English said...

So sorry you had to go through that, Darlene. What a horrible experience!

I missed Ronni's challenge because on Thursday I gathered with hundreds of my Democratic party fellow members to stand in the sun for hours waiting for President Obama to show our support for him and for single-payer. No one from the mainstream media showed up, and the next day, the WashPost had a bizarre headline about how support for Obama and single payer was sinking fast! It's hard to find yourself hating the opposition, but I think that's about the only rational response. They are such a**sholes!!

kenju said...

Darlene, come back to my blog and read the red link to find out where the booby got its name. The 2nd to the last paragraph tells what it means.

Sylvia K said...

I am so deeply sorry for what you had to go through and thank you for sharing your story. I haven't had to face challenges like that, but I do have a living will and my children know very well that I do NOT want to be put on life support in any way. I'm so sick of this whole health care thing that I can't even write or talk about it at the present time because I get so frustrated nothing comes out the way I want it to. There are indeed so many a** holes out there and they make me literally sick to my stomach.

blunt delivery said...

darlene - thank you so much for stopping by my blog!! I have to say that I'm mighty impressed you are running such a blog like this - my own mother can't even operate a VCR, much less a computer!

Your family is very fortunate that you have so many arrangements set up for your will. We're dealing with my granparents right now and it is so so hard getting evertyhing sorted out cus my grandpa was too stubborn to take care of it!

You are a dear! I will be back.

blunt delivery said...

p.s. photography is also my hobby and travel is my biggest passion.

we are kindred souls, darlene

Anonymous said...

Darlene--What a heart-wrenching experience for you to have had. I anguish over what you and others have endured. If you (and your readers) have not already done so, I would highly recommend that you give copies of your end-of-life documents to your primary care physician/nurse/physician's assistant. Then, discuss it with him/her. If they can't be bothered, please change your health care professional.

In my own case, when I gave my physician my statements, I told her that I am not a religious person and that, therefore, there should be no religious considerations in choosing my treatment/non-treatment. Information shared will, of course, differ for each particular person.

Blunt Delivery--Don't be so hard on your mom. *smiling* Many of us who have been using computers for years still cannot cope with a VCR. Their firmware is not as user friendly (nor are the directions as well thought out) as the OS makes most modern computers. I first used a personal computer in 1985 and used mainframes (analog, digital, hybrid) from 1959-1995. Not all of us old folks, especially not all of us women, had that advantage.
Cop Car

20th Century Woman said...

That gut wrenching story was soberly and movingly told. Send it to Orin Hatch and Charles Grassley. (I wouldn't bother with Sarah Palin.) I think we need a special web site where people can continue to post stories such as these. Ronni's challange should be just a beginning.

Rain said...

I wrote about the subject of living wills also. It is a disgrace what Congress did-- both sides-- to pull that clause. To me what you did was right, loving and kind. Sometimes doing the right thing is very hard. I would think his pulling out the catheter expressed his wishes. Tragic ending and many are like that. :( We are kinder to our pets than ourselves.

Darlene said...

*Xtreme English - I think the mainstream media are all owned by corporations that are against the single-payer option and will do nothing to further it.

*Kenju - I'm sorry I missed it the first time. I guess I have so many blogs to follow that I read too fast and miss important parts. Thanks for the info. I will be back.

*Sylvia - i know what you mean. I get angry at the lies, distortions and sheer stupidity too.

*blunt delivery - Thank you for your visit, also. We must be kindred souls. As Cop Car said, don't be too hard on your mother. Sometimes it just takes a push out of necessity to learn how to use the computer. It is a life saver for me, but I am sure your mother has other interests that are more important to her.

*Cop Car - The first thing I did when I changed primary care doctors was to give him a copy of my living will and medical power of attorney. I talked to him to find out if he had any problems with my wishes and he agreed with me on all counts. We are all going to die and it's so much better to have control of as much as possible of the way in which we do it.

*20th Century Woman - I agree that we can't let up now. I will be writing more on this subject until it is resolved.

*Rain - I did read about your story involving the hip surgery on your mother-in-law and the terrible decision forced on the family. It shouldn't be this way.

I consoled myself that Wayne was trying to commit suicide in the only way available to him. It took him a long time to accomplish that as he was so weak. Thank you for your kind understanding.

Vagabonde said...

My husband was next to me reading on his computer and I placed your blog on it so he could read it. We have an old will from the 70s but the lawyer who was the executor has passed away and we need to update it – we don’t have a living will and I am not sure where to get one, so after reading your post I am going to find out as soon as we come back from our little trip next week. I feel for you to have had to go though these hard decisions for your loved one, it must have really been difficult. Thank you for sharing this with us and it will make me act on the living wills.

Darlene said...

*Vagabonde - I am so glad that my story prompted someone to get a living will. I got my copy from the State Health Department because it is one that is legal in Arizona. You might start there. Senior organizations are another good source of information. Your doctor may also have a form. You should discuss your wishes with him at any rate. And while you are updating your will you could have your lawyer furnish you with one. However, using a lawyer is not necessary. They charge for it, of course and lawyers are not cheap. Don't forget to get a medical power of attorney at the same time designating who will make the medical decisions if you are unable to.

Looking to the Stars said...

Darlene, my heart dropped to my toes. I am so sorry you had to go through this.

It is stories like yours that the Senate needs to hear. They haven't been in your shoes, their eyes need to be open.

And for us who read your blog, this is good info for us to get our house in order. To make things easier for those left behind.
Hugs and love sent to you today, sweetie :)

Nancy said...

Darlene,

I am sorry you had to go through what you did with your husband. If this new Health Care Plan goes through,perhaps it will include the counseling sessions that many people need to understand the necessity of having a living will.

I agree with 20th Century Woman who said that you should send a copy of your essay to Orrin Hatch and Charles Grassley but to skip sending it to Sarah Palin. Yes, Darlene, don't waste it;only send it to people who can read.

Cowtown Pattie said...

Too bad we can't force politicians to "walk (at least)a mile in our shoes".

They might have a far different attitude. Then again, money talks then common sense walks.

Hard choices in life...thanks for sharing.

Tabor said...

Darlene this has been such a compelling story and supports what a strong and loving person you are. You are among many, I am afraid. I hope that this health care bill gets passed!

Darlene said...

*Looking to the Stars - It happened many years ago. Thank you for your sympathy

*Nancy - Good one. Only send it to those who can read. He He!

*Cow Town Pattie - Boy, don't I wish we could. They would get blisters.

*Tabor - Thank you for such nice words. I will do what I can to get it passed even if I lose all my followers through sheer boredom.