May 162012

Did you talk to your parents yet? For that matter, have you talked with your own spouse and children? Do they know your wishes? Do you know your wishes? Is any of this in writing?

Today, if you do nothing else, fill out your advance directives. Encourage your parents, especially if they are elderly, to put their wishes in writing also. These are simply forms that tell medical providers what you want done in case you are unable to tell us yourself due to illness or injury. It is planning for the inevitable in advance. A living will is your directive on what you want done in regard to life-sustaining measures such as resuscitation, machines and tubes. A surrogate designation is a person you have chosen to make those decisions for you in the event a decision is needed. It should be someone you trust and that you have told your wishes to. If it is your desire that everything be done to keep you alive as long as possible, they need to know that. If you desire is comfort measures only, they need to know that too.

You do not have to have these forms drawn up by an attorney because there are free ones all over the internet. You should however, know the laws in your country or state and you might wish to discuss it with an attorney, especially if you are not familiar with these concepts.

You can start here: Advance Directives.

They have downloadable, state specific, forms as well as more information on the subject. Your local hospital and hospices will also have information on advance directives and can talk to you more about them. You owe it to the people you love to do this one thing if you have not done so already. These simple pieces of paper can also save a lot of family squabbling and heartache. You would be surprised how often people respond completely out of character when faced with the death of a loved one.

Another form that many people are turning to is called, Five Wishes. It has been approved in all but eight states. This is gaining in popularity and because of the terminology, wishes as opposed to will, people are more open to using this. You can find more information at Five Wishes. Five Wishes addresses your persona, emotional, and spiritual needs as well as your medical wishes. It is written in simple to understand language and personally I think it is a wonderful tool that everyone should at least look at using. There is a nominal charge ($5.00) for the form but you can download a sample to see what you are getting.

As a caregiver, you should bring up the subject of advance directives with your loved one. They have the right to express their wishes and in fact may wish they could but they are afraid of upsetting you. They know they are ill, they know they feel bad and they usually know they do not have long left to live; just as my patient did.

He wanted to talk about it. He had questions and he wanted to know what would be done and what choices he had. When he asked that question of me and I answered him, he and his wife were able to have a dialog and instead of spending his remaining few months tiptoeing around each other, they spent it just enjoying what time they had left.

In case you are wondering how I answered that question I will tell you. I wish I could take credit with the words that came out of my mouth that day but the truth is, they were given to me a few years earlier when I was going through my own struggle of dealing with so many of my patients dying.

Everyone has their own beliefs about life and death and I do my best to respect them all and not shove mine down anyone’s throat. Because I knew this man and his family, I knew I could say what I did.

I looked him in the eye and said, “I don’t know what it’s like to die and I’ll do my best to make sure you don’t suffer. But someone once told me that every time someone you love dies, they take a piece of you with them to be closer to God.”

May 152012

“What’s it like to die?” He sat in his wheelchair in the middle of the kitchen, looking to me as if I had all the answers. His wife sat nearby and gave a soft gasp of astonishment at his question. He had cirrhosis of the liver or liver cancer, I cannot remember which now. I do not remember the disease, but I remember him and his wife. And I remember that day and that question.

When I first went out to the home I knew his diagnosis was terminal. His wife and kids knew it too. But no one had told him. I was a bit surprised to find his family that naive. But it was too early in the relationship for me to explain to her that he had the right to know. When you are in someone’s home, especially in a professional capacity, it is a balancing act to earn trust.

In the United States, talk of death is traditionally avoided, as if by ignoring it, we can defeat it. And our desire to defeat it is evidenced in our constant battle to raise awareness about every terminal illness and find a cure. I would like to think it is because we love life so much but I suspect the truth is our fear of death. And we perpetuate that fear by not talking about it. It is not looked at as a part of the natural order of things but an enemy to be fought against.

When I first started nursing 29 years ago, I had never heard of living wills and advance directives; the right to die idea was just starting to take hold. I wish I could say that we are more enlightened now, but that is far from the truth.

People are brought in to the hospitals every day, with nothing in writing and no one appointed to make decisions for them. They have not told anyone whether or not they wish to be hooked up to machines or fed through a tube if there is no hope of recovery. And the burden then falls to the family to make that decision and many of them feel guilty, as if they are being asked to kill their loved one. Even though they may know intellectually that it is the right thing to do, it tears them apart.

On the other hand, there are those who have discussed it with their family, who have made it explicitly clear what they want done and do not want done. They have put it in writing, made their own funeral arrangements, done everything they can think of to prepare for the inevitable. When their time comes, the family is still sad, but they can grieve the loss of their loved one rather than wrestle with decisions, uncertain what to do. If a decision is left to be made they are fairly certain what their loved one wanted and they do not suffer from guilt.

As you learned from yesterday’s blog, even with everything discussed, a nurse who has seen the ugly side of prolonging life in terminal cases, the decision was still a hard one to make. If your elderly parents have not filled out their own Advanced Directives, perhaps it is time to have a conversation with them. They may find it a relief to talk about it.

Tomorrow my answer to the question, “What’s it like to die?”

May 142012

As our parents age, we must come to terms with the idea of losing them. I do not care how well prepared you think you are, it will most likely be hard. You can not help but worry about the parent left behind. What must they be going through?

Today at work, a nurse practitioner and I were talking and the subject of death came up. She had lost her husband less than a year ago, after almost 30 years of marriage. She still misses him. While I can give you my observations about grief, I thought I would let her tell of her experience. Though she is not elderly by any means, perhaps, her words can help you understand some of what your parent is going through.

“It’s still hard. People don’t understand. He was my best friend. How do you put a time limit on how long you grieve? It isn’t like there is a magical moment when you wake up and suddenly the hole in your life has filled in.”

“How long were you married,” I asked.

“Twenty-nine years,” she smiled as she answered.

“That’s a long time. You kind of get used to having someone around after that long,” I replied.

She nodded. “I thought I was doing ok and then one day I went to church and I just lost it. I couldn’t go to church for a long time without crying. I just quit going for a while. It’s better now but still….”

Her husband had been a pastor. She had just come from church. I can only imagine how hard it must be for her. Many people turn to their faith to help them through the grieving process but for her, it is making it harder.

“For a long time I just walked around in a fog,” she continued. “I came to work. I guess I did okay. I wanted to just stay home but that wasn’t an option. I have to work.”

“Do you think that working might have helped,” I asked?

“Probably,” she answered. “I don’t know. I just sort of shut down for a while. I was visiting some friends who were well-meaning, trying to help me. They introduced me to their neighbor who had lost her husband the year before. She told that she didn’t feel anything for about six months. She said her grandchildren were over and she cut her hand and realized, it hurt and that was the first pain she had felt in six months.”

“Wow.” I was surprised. I did not realize that grief could actually block out physical pain.

“She was wonderful. She told me to call her anytime. People mean well. My friends are always wanting me to places and my kids are always trying to get me to a movie or out to eat…” She paused, searching for words.

“It’s just too much effort, isn’t it?”

“Yes! You understand!” She smiled.

I laughed. “It ain’t just you. I think it is a curse of the profession. When you get off work, there just isn’t much left to give.”

She nodded in agreement. “I was very fortunate to be able to take off and be with him those last six weeks in ICU. When they got him off the ventilator we got our hopes up. But when they wanted to put in a tracheostomy and PEG-tube, I wouldn’t let them. We had talked about it and I knew he didn’t want that. He was very clear…” Again she paused, searching.

“It was still hard, wasn’t it,” I asked?

“Yes, it was. Even knowing all we know and what the realities are in these situations and seeing all we’ve seen…it is different when it’s your spouse. I mean, we’d talked about it several times. We were both clear on what the other wanted and knowing that helped. But yeah, it was hard,” she acknowledged.

“But you’re at peace with your decision,” I commented.

“Yes. Yes, I really am. I know it was the right decision. I knew it then, but it was still hard.”

And sitting there looking at her you could tell she really was at peace with her decision to not have her husband’s life prolonged by artificial means. She had honored his wishes. And he had left her one final gift. The gift of knowing what he wanted gave her peace.