How do you overcome denial of death?

12 answers | Last updated: Nov 07, 2016
A fellow caregiver asked...

How do you deal with death and denial? I have a cousin who is receiving hospice at my home. In November 2006 she was diagnosed with stage IV breast cancer with metastasis. She has gone through chemo off and on since then and this past March the cancer was found in her bone marrow which was causing her to need frequent blood transfusions. Throughout these two and a half years she has been in the hospital for dehydration and other minor problems at least once every three months or so it seems. On May 21st she was admitted to the hospital again where it was found that her central line had gotten infected and caused a huge mass of a fungal infection on her tricuspid valve, renal and liver failure also. Without taking her line out there would be no chance of recovery but the surgeons here in our little town were unwilling to do the surgery due to the severity of her medical problems and insufficient medical staff here. I had power of attorney since her first hospitalization and so it was left to me and her brother to decide what was to be done. We chose to allow her to go peacefully and without pain.

Within the next couple of days we put her on hospice and lo and behold she woke up and slowly started drinking fluids. Her oncologist spoke with her and explained that she was not coming out of this and suggested she come home with me which is what we wanted. She is home now and every day getting stronger - not medically better but stronger and that is what she sees. She never wanted to deal with the diagnosis therefore I have taken care of her and dealt with all her medical appointments. My question is what do I tell her when she says, "See, I am getting stronger and eating 2-3 good meals a day?" She was hardly able to eat due to cancer prior to this hospitalization. And now she sees herself as getting better and will be able to go home soon. I have reminded her a few times the extent of her illness but it's like she didn't hear or chooses not to hear. Since our decision was made the only medications she's gotten are pain killers, no antibiotics, chemo or other necessary drugs to counter her infections. Her other diagnoses are hypertension, anemia and depression.


Expert Answers

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

I confirmed with a surgical oncologist about an infected central line, and you are right. This is a "pre-terminal" event and she will not recover from this without removal of the line. But commonly, cancer patients will see a short improvement in health that preceeds death; one chaplain I know says it's a boost of energy to complete the things you need to tie up before you leave.

In response to your concern about what to say when she is thrilled she can eat: Feed her when she's hungry and enjoy it. Consider using her extra energy and mental capacity to take care of last wishes (you can call them something else) -- having her concentrate on "to do's" could be rewarding and productive at the same time. Some ideas might be to organize pictures or old letters, or write new ones. Plan a small gathering to celebrate an event, or a little trip.

But let's get back to the subject of denial. After years of caregiving to your cousin, you have established communications patterns that have worked in the past but are breaking down with these unprecidented happenings. I applaud you for still searching for ways to help her. Because this is all new to the two of you, it may be time to try something new in dealing with her denial about dying.

The work of two geriatric and palliative care professionals can help: Dr. Elisabeth Kubler-Ross and Dr. Joanne Lynn. Kubler-Ross's famous work, "On Death and Dying," outlines the five stages that she's identified during multiple years of research, one of which is Denial. Take a look at this website to read about the stages.

This will help you to understand her grief, as well as your own anticipatory grief. You're not immune from feelings, even though you've had to set yours aside before.

Dr. Lynn's work "Handbook for Mortals" is a beautiful guide to helping others toward end of life.  You will find phrasing in both books that you can apply to your own situation, including questions and answers. You can tailor their recommendations to your needs. Here's a link .

It certainly sounds like your cousin has a wonderful caregiver in you.  One last word of advice: Do not worry if you are not "succeeding" in communicating with her; you have done your job well over these years and she will understand in her own way, in her own time.

 


Community Answers

Gtrb answered...

  As a nurse who has assisted at many deaths, I have to mention an important fact that is frequently overlooked in situations like this: Find out what the patient is waiting for. What appears to be 'denial' to the family is often (maybe usually) purposeful behavior on the part of the patient, even if they're totally unaware of it. I've often found it helpful in situations like this to simply ask the person who is dying: What would you like to do most? Are you waiting for someone because its seems like there's something else on your mind" or words to that effect. Kubler-Ross was fine but she only provides a framework and not much 'meat' when it comes to specific situations...


Hello answered...

My father died 3 months of being diagnosis with bladder cancer. He was 89 years old and my brother, the doctors and I decided that my dad would not be able to do chemo or any treatment due to his heart and other physical problems. We hired nurses fo 24 hour care. Up till a week before he died- he went visiting, went out for lunches and dinner, - we made sure he continue to have an active life. About 6 days before he died- he got very quiet and we decided it was time for hospice. The hospice nurse came out on a Wednesday and told us my dad had at least a month to live. On THursday we could see my father was declining a lot faster- so we made sure the family start saying their goodbyes. We were told by the hospice nurse sometimes people who are near death need the family's approval to die. That is what we told him- that we will be okay and will miss him but we don't want him in pain any longer. He made sure to die when no one was around-and he died that Saturday morning at 5 am


Grannyb answered...

After 17+years working with hospice patients, I found that most all of them knew they were dying even if it was never discussed with their closest family members.  It is the patients right to handle these precious times the way they feel most comfortable.  Perhaps she is in denial but most likely she is aware and will soon move to another phase of her personal grieving.  Whatever she decides is acceptable.  Just being there for her is your special gift to her.


A fellow caregiver answered...

My mother was told she was dying by her doctor and she explained to me that this man took away all hope she had for life. She explained how cruel anyone do this to another human being. They know how they feel and how they are. Everyone living has hope for another day. If any of us living are told, we certainly give up, and prepare to die. The only reason anyone should tell another this, if the sick person asks about their prognosis of living, or one thinks they have not put their affairs in order. It is best not to take away hope that person has within.

She is very, very lucky to have a person like you who is asking these questions and evidently giving her such wonderful care. It is perfectly ok to ask for certain possessions while someone is living also. Usually they are honored you want something of theirs too if anything ever happens to them.

I hope this helps, not hurts you. All the other postings were true also but you have to read their heart!

 

 


A fellow caregiver answered...

My husband's son's wife is a nurse and she is so into telling her father-in-law that he is terminal that it has caused a rift in the family. And wanting to ask questions like, "Do you have any regrets?" really does who any good. Only the person who wants to be rewarded with the right answer. Certainly not the patient. My husband has hope and as hard as it is to keep up appearances, it's what he wants. And I will not allow anyone to ruin the little time he has. I know he will see the end coming when it does.


Rosalie, cape town, answered...

I was told in August 2006 I had six months to live and to prepare my family of my passing as being near. What utter poppycock. It is now January 2010 and I am still here. All I take for my metastic breast cancer of the lung is bicarbonate of soda in some fruit juice to alkalise my system once a day and a few drops of peroxide (10vol) in water to give me oxygen, both of which necessary to keep living!!!!


Grannyb answered...

Your son's wife may be trying to open up lines of communication for your husband...My hospice did utilize a "Life Memories" book which asked that question along with many other more positive ones that helped the terminal patient get their thoughts in order and record things they might have trouble saying to others. We were told by family members that using this tool was extremely helpful.


Rosalie, cape town, answered...

Doctors and nursing sisters are trained to use medications.. Chemo kills bad and good cells and leaves one depleted. Read about Bicarbonate of Soda uses as well as Hydrogen Peroxide on the internet. Please listen to me. I know I have been there. May the Lord guide you to finding how these two cheap items will give you and your husband peace of mind. I have no faith in doctors any more. Luv, hugs and prayers and just do it - Rosalie


Cwelzy answered...

please explain,,,I'm losing it!!!


Rosalie, cape town, answered...

Dear Cwelzy: Cancer thrives in an acidic evironment: you need bicard to keep your body alkaline. Cancer cannot tolerate oxygen so you need your system to get oxygen, thereby killing off the cancer. You are not losing it, and the answer is to google it! Happy trawling. See also www.earthclinic.com a marvellous site. With love and light and thanks to the great one upstairs for giving me extra time to watch my grandchilden grow up - Rosalie


Ritzput answered...

After many years of lung issues and starting last December, my mom was put on Hosparus(division of Hospice) at home and I spent every day with her helping prepare meals, etc. We had many wonderful talks and being the realist that she was, talked about her preparing a "death book" for me and totally arranged for and paid for her cremation. We even discussed spreading of her ashes which she didn't like the idea but said, "i won't be here anymore so do what you want". On March 11, on the way to a Dr.s appointment, she told me she didn't believe in "jinxing" herself and said she was having the best day in months. Early the next morning, i was called by Hosparus and later that day when another nurse came, they proclaimed her "actively dying". I had no idea what that meant or stages involved. The hosparus nurse went through everything with me and my family. I had time to call close family to fly in next day. I was able to tell her this and she hung on one more day dying within 2 days. She had told the Hosparus chaplain when asked what is her ideal way of dying she replied, "be in my room and one by one have all my loved ones individually give me a hug, then leave me alone to take my happy pill and dye in peace". She basically got her wish although it took awhile to get her settled last few hours. I encourage anyone that's a caregiver to try and be real about discussing death with loved ones regardless of how fearful they may seem. By reassuring them you and your family will be fine and you only wish their suffering to be over, seems to reassure them that dying is OK and you'll be there with them if they want. It open's up doors of communication by having them tell old stories and inadvertently making them appreciate their quality of life with nothing left unsaid. As a caregiver, it also forces you to "grieve for a living person" and as difficult as that is, does make you grateful their suffering is over and helps face the pain of their death afterwards. It just doesn't get any better than that. Hosparus is amazing at helping the dying person live out their remaining time as comfortably as possible and give major support to the caregiver by assigning you the same nurse for weekly visits,as well as social worker and chaplain. They allow up to 13 months grief counseling as well. It's a win win for all!!