Nancy Brataas is dying. It’s just not happening as fast as her doctors predicted.

“I am really glad they were wrong,” the former state senator said during a recent interview in her Rochester apartment.

One year ago, Brataas was getting ready to leave her home to tour apartments being built for University of Minnesota Rochester students when she suddenly had difficulty breathing. She turned to the person she was with and asked for help.

“I was so bad by the time I got to the front door I said, ‘You’ve got to take me to the Mayo Clinic. I don’t have an appointment, but I’ve got to go there.'”

That’s when Brataas was told she had less than six months left to live. She began receiving services from Seasons Hospice at her home to help her cope with her Chronic Obstructive Pulmonary Disease, a group of lung diseases that make it difficult to breathe, according to Mayo Clinic.

But the six-month mark came and went. That’s when Brataas dared to tackle a daunting challenge — to organize thousands of family photos, newspaper clippings and mementos that had piled up in boxes over the years.

“When I went on hospice, I certainly didn’t do (the photo sorting) in those six months. I’m not supposed to be here. Then after I passed the six-month thing, I thought maybe I’ll try it,” she said. “And if I don’t finish it, too bad. I do not finish it.”

Hospice services
It’s rare for a patient to receive hospice services for more than six months, said Amy Jo Flaherty, a social worker for Seasons Hospice. In 2012, only 8 percent of Seasons Hospices’ patients had received services for more than 180 days. To qualify for hospice services, patients have to be diagnosed with less than six months to live and meet certain criteria that indicate their condition is deteriorating. Patients are re-evaluated on a frequent basis to make sure they still qualify. Flaherty is quick to remind Brataas that the six-month time frame was only a guideline.

“It’s a guideline, and we know you are someone who breaks through those things,” she said.

Indeed. Brataas has spent her life defying the odds. She became the first woman elected in her own right to the Minnesota Senate in 1975. She went on to serve 17 years in the state Capitol. But her foray into politics began well before that. In 1960, a Post-Bulletin reporter
wrote that Brataas had “no present admitted political ambitions but is a comer. If she stays active long enough, she will probably one day be a national committeewoman or state chairwoman.” Three years after that was written, she became the state party chairwoman.

Sen. Dave Senjem, R-Rochester, said he considers Brataas his mentor and frequently seeks her political advice. He marvels how during her tenure she managed to have a huge legislative impact despite spending her entire Senate career in the Republican minority.

“She was an absolute workhorse. She was tenacious. She would take ideas and advocate for them with energy nobody could imagine,” Senjem said.

He credits her with paving the way for the establishment of a University of Minnesota campus in Rochester. Despite her frail condition, he said she made it to a Senate reunion earlier this year.

“She was the star of the show. She is just so highly respected,” Senjem said.

Preparing for the end
Brataas said she is grateful she qualifies for hospice care, which has allowed her to live independently. Once every two weeks, she is visited by a registered nurse and a social worker. She also gets help during the week because of balance issues, and a massage therapist stops by regularly. Hospice volunteers help her with her computer and her family archiving project.

“This staff is so highly qualified, so loving, so competent,” she said. “I just wake up in the morning and cannot believe my good fortune.”
Brataas breathes with the aid of an oxygen tank 24 hours a day. She easily gets winded and cannot walk far. Her medical troubles started in 1999 when she was diagnosed with lung cancer. Half of her right lung was removed.

While she might be limited physically, it doesn’t mean she’s just sitting at home watching TV. Every morning, Brataas generates her own political email newsletter, sending links of stories to 90 friends. She also is trying to learn how to use a Mac computer for the first time.  An avid gardener, she enjoys tending to the flowers on her deck.

“I’m at peace with the fact I’ve had a nice life, and I accept that fact that it’s time for me to die,” she said. “I’m not fighting that at all. It’s time.”

Written by Heather J. Carlson for Postbulletin.com

Dad didn’t feel like dying. He felt full of life and longing to live. He had more to do, more to say, more to feel, to taste, to write, to experience. He was angry and sad, disappointed and confused, scared and brave, unaccepting and, finally, accepting.

For the past three years, I talked to him daily to be as close as I could. I listened as he told me everything he could think of about his day; he often told me the same things twice. Our time together was coming to an end, and although we didn’t know when that would happen, we knew it was coming sooner than we wished.

In 2009, he was hospitalized with a blockage that required surgery. A bowel tumor was detected and, despite its removal, Dad’s cancer grew. Next, they removed half his liver—a big operation that beat him down emotionally and energetically. He rallied by setting small physical goals and systematically beating them all, with each phase of cancer growth and each new method of zapping it while preserving the human body where it grew. Since he couldn’t tolerate chemotherapy, Dad opted for other treatments that worked effectively… right up until his most recent hospitalization.

The plan was to get him feeling stronger and send him home. I was with him at the hospital waiting for the physician to talk with Dad about his release the next day. He was eager to go home to his apartment and to see my stepmom, recovering from surgery in another facility. Our mood was jovial, hopeful.

The doctor arrived and asked Dad how he was feeling. “Not so bad,” was my dad’s reply. “Will I be going home tomorrow?”

“We will release you tomorrow or Tuesday at the latest…” Clumsily, the doctor added, “And I recommend that you visit with the hospice coordinator and get that support system set up before your discharge… [He said what?]… with no further treatment options.” Period.

Hospice? How could that be? Why, Dad had just received encouraging news a few days before! Did the doctor say hospice? The room seemed to cave in on me as I looked at Dad’s shocked and fallen face.

The doctor bumbled the ‘there-is-nothing-we-can-do’ end-of-life news and traumatized Dad unnecessarily with his abrupt and backhanded delivery. I thank the Universe that I was there to ‘translate’ the newest findings and to ease the unexpected blow—even if just a little bit—by absorbing it along with him.

“Hospice? No more treatments? No more goal setting. No more… everything. This is it, then! Life is coming to an end and I’m not ready. I have more life to live. There’s more life in me. I’m not ready for this news. Hold me, hold me,” my father reached for me through his broken words.

And then the tears came. I held him as well as I could, standing next to the hospital bed. We cried and cried. “I’m so glad you are here. Thank you for being here,” he repeated. We cried some more. And then we talked it over again, everything the doctor said and what that meant for our future.

One by one, Dad and I contacted everyone who needed to know. Again and again, we repeated: Dad would not return to his apartment. He would not be getting better this time. He would be on hospice and facing the end of life. One phone call blurred into the next: waves of tears and words of comfort, disbelief and bare acceptance.

Our family opted for the extra layers of hospice support, thankful it would augment his skilled nursing care. Each morning my father mustered all his strength to be with my stepmom at her bedside, cheering her on as she recovered from her own health issues, lovingly being present as only he could.

Children, stepchildren, grandchildren and some great-grandchildren came to visit him. In private turns, he hugged each of us close, assuring us of his undying love and the certainty that love never dies.

When it was my turn, he asked me if I was ready to release him, if we were ‘finished’. Through my tears, I said bravely, “I am complete with you, Dad. When you are ready to go, I’m OK with that.”

“Thank you. Anytime you want to feel my love, it is there for you, and it always will be.” He spoke to each of us in much the same way.

Tears streamed down our many faces, as we hugged, kissed, held hands and breathed together, feeling the gifts of time, words, joy and peace—a lifetime of sharing summed up in a few precious moments. He just wanted us to be there, and I was so thankful that I was. We laughed. We touched. We accepted the inevitable.

My dad passed while I held his hand, talked and sang to him. In those moments between his last breath and my realization that it was, I felt many things—sorrow, relief, surprise, wonder—and, finally, gratitude and peace that his struggle to live and to die all at the same time was over. I’m so grateful that I was present and that I got to say, “Daddy, you will always be with me, and I with you. My heart and your heart are one. Thank you for your endless love. Thank you for being the very best dad I could ever have.”

Written by Julie Nierenberg for oktodie.com

Guest Post by Julie Saeger Nierenberg. Julie is a writer, editor, educator and artist. Inspired by the journey of love, sorrow, grief and release through her father’s transition, she will soon publish a book about her family’s shared experience. Believing that the dying and bereaved among us deserve a fulfilling death, Julie hopes to contribute to the shift in our cultural preparation for and processing of the inevitable finale to life.

In the last few years of his life, Julie’s father, Armin Saeger Jr., published a book of memoirs, entitled Sowing My Quaker Oats. This was a labor of love and a major accomplishment for a man with very diminished eyesight and a diagnosis of metastatic cancer. Julie illustrated Armin’s book and enjoyed assisting him to draft and shape its narrative. She now coaches other authors to leave a written legacy of love and personal history for their own families.

The question of when to begin a process of completing relationships that have ended or changed, due to death or divorce, is confused by conflicting opinions from a wide variety of sources. Medical, psychological, societal and family experts all approach the issue from differing perspectives.

It is not at all uncommon for us to hear of people being told, by their Professional, “it’s Too Soon to begin your grief work, you’re not ready yet.” We grit our teeth every time we hear that comment.

Imagine that you have fallen down and gashed your leg. Imagine that blood is gushing from the wound. Imagine someone walking by and saying: “it’s Too Soon, you are not ready for medical attention yet.”

Now, imagine that circumstances and events have broken your heart. Imagine that you are experiencing the massive and conflicting feelings caused by significant emotional loss. Imagine a friend, or worse, a professional, saying to you: “it’s Too Soon, you are not ready for emotional attention yet.”

This is an area that is so filled with misinformation that it is often difficult to fight through to the truth. We have been falsely educated to believe that grievers want and need to be alone. We have been incorrectly socialized to avoid the topic of the loss, in an attempt to protect the griever.

Here is the simple truth: most grievers want and need to talk about “What Happened” and their relationship with that person or event. They want and need to talk about it almost immediately following the loss. It pre-occupies them, just as the person with the gashed leg is pre-occupied with their accident and their treatment and their recovery. Those who do not want to talk about it will let you know.

When a person learns of the death of a loved one, an almost automatic review process begins. This process may be conscious or unconscious; usually both. In reviewing the relationship, the griever remembers many events that occurred over the length of the relationship. Some of the events are happy and produce fond memories; some are unhappy and produce sad memories. During this automatic review the griever will usually discover some things that they wish they’d had an opportunity to say, things they wish had ended “different, better, or more.” It is those unsaid things which need to be discovered and completed.

The review is most intense and most accurate in the time immediately following the death. It is the time when we are most focused on the person who died and our relationship with them. We will rarely have another opportunity to remember with such detail and intensity. This is the circumstance where “time” not only doesn’t heal, but also diminishes our memory as we move further away from the death itself.

We will refrain from offering any concrete definition as to the “time” involved. Every griever is unique. Every griever responds at their own pace. It is essential never to compare one griever to another. Each and every griever has their own individual beliefs about dealing with their feelings of loss. Each griever is remembering their own individual relationship with the person who died.

by Russell Friedman for griefrecoverymethod.com

Have you ever said “I’m fine” when nothing could be further from the truth?… So have we so you’re in the right place!

A common thread running through some of the articles we have written is the misinformation we were all subjected to about processing the normal emotions caused by loss. We do not want to create any new loss issues by blaming our parents in particular or society in general for having passed on ineffective ideas, skills, and tools for dealing with loss. All we want to do is help establish that what we have been using to process our sad, painful, or negative feelings hasn’t worked, and that we need to acquire more effective tools for dealing with loss events.

Much of the incorrect information we learned and practiced may have convinced us not to show our REAL feelings at any cost. We were taught to bury any feelings that dealt with sadness. We were taught: “Laugh and the whole world laughs with you, cry and you cry alone.” This and hundreds of other clichés about dealing with sad feelings taught us to lie about how we felt. And even the lying was protected under other misinformation like: “Don’t burden others with your feelings.”

I’m fine!
When we make public appearances we often ask large audiences this question: “Do you like being lied to?” Of course no one says yes. Our next question is: “How many of you have ever said ‘I’M FINE’ when you were feeling terrible?” Every single hand in the audience goes up. Conclusion: Nobody likes being lied to…and everybody lies about their feelings. If this were a physical illness it would be an epidemic and the Center for Disease Control would be granted billions of dollars to find a cure.

Every time we lie to others we lie to ourselves. Our subconscious mind hears the lie and continues to bury the feelings generated by the initial event. Unresolved losses are cumulative, and cumulatively negative. Time does not heal the pain caused by loss and neither does lying about our feelings.

It would be impossible to cure such a massive problem in a single blog, but let’s try for a little bit of recovery. Allow yourself to believe that the subconscious will take actions based on conscious commands. When we lied and said we were fine, we told it that there was no problem so it need not search out a solution. The net effect is to allow the cause of the problem to go unattended and rebury itself. The next time it attacks we may not be able to recognize the cause or source of the attack.

Tell the truth about how you feel!
A major key to recovery is to process every feeling in the moment you have it. It does not require any special skills to tell the truth about what you are feeling.

For example: “How are you?” … “I’m having a tough day, thanks for asking.” Notice that the answer is truthful but does not invite any help or advice. It also has the capacity of serving notice that you are not on your game and the other party can respond accordingly. When you say “I’m fine,” but you’re not, you have sent a very confusing message.

QUESTION: Sometimes I tell people “I’m fine” and they don’t believe me. Why not?

ANSWER: Approximately 20% of your ability to communicate is verbal, leaving about 80% as nonverbal. Nonverbal communication includes tone of voice as well as facial and body signals. When our verbal and nonverbal signals do not match, most people will respond to the nonverbal. So when you lie, most people can SEE it.

Written by Russell Friedman for griefrecoverymethod.com

When you are looking into the eyes of your loved one declaring that you will love, honor, and obey each other until death, you really don’t know the full significance of those few words. You actually are vowing to take care of one another for the remainder of your lives. What happens when one spouse becomes terminally ill? Just hearing those words is devastating whether you have been together a year or thirty years.

In most marriages or relationships, both partners provide care for the other. One may handle household chores while the other, financial things. The couple typically settles into a routine to accomplish all these necessary tasks. When one becomes ill however, the other must handle all of the responsibilities, plus take care of the sick partner. This disruption of normal routines can be very stressful.

When a married person is diagnosed as terminally ill, their spouse often becomes the primary caregiver, taking on different roles as nurse, counselor, and personal assistant. The job of caring for a dying spouse can become very exhausting physically, as well as mentally. It would be very wise for the caregiver to accept any help offered by friends or family. This will allow the healthy spouse time to unwind and seek other outlets for their stress and anxiety.

After receiving a terminal diagnosis, most people will share the news with family and close friends. Many people will offer their help and well wishes. Sometimes, the ill patient will reunite with loved ones who have been distant. Sometimes though, the ill person may prefer the company of a small circle of loved ones. It is very important that the wishes and preferences of the ill one be respected and honored when allowing people to visit.

When faced with a terminal illness, it is urgent that legal business is handled. Having a legally binding document in place is the only way the terminal patient can assure that their end of life care will be given as they want.

It is not easy knowing you are going to lose someone you love. This time will be filled with many emotions. It is extremely important that the couple make and take time to express their love for one another. This is also the time to allow each other to express themselves. Allow the patient to voice anything they feel they need to say. Just letting the ill person know that they are truly loved can give them a sense of peace about death. Allow the dying spouse an opportunity to express their feelings and love to the surviving spouse. This expression of love can help both partners accept the reality of death.

Written by Pat Gibson for Seniorlist.com