Denial.
Denial by the person with a life threatening illness, denial by the caregiver, and I’ll even add denial by some attending physicians. Denial is often the reaction to diseases that have reached the point of not being fixable.
It can’t be me. It can’t be my special person. The doctors are wrong. If we do everything the physician recommends, we’ll be fine. If we do all the “right things” (eating, exercising, not smoking, not drinking alcohol, praying) everything will be okay. AND if the doctors are right in saying the disease isn’t fixable, then there will be a miracle and death will not come. Other people die, not me or even anyone close to me.
Some people stay in denial forever. Others, as the body continues to decline, realize that indeed death will come – and sooner than we had realized.
Denial is when we don’t talk about the illness or its seriousness.
Denial is when we act as if all will be well.
Denial is "Don't tell Mom. We don’t want her to know she can’t be fixed." Denial is Mom not talking about her approaching end of life.
Denial brings isolation and loneliness. We are all alone with our fears, with our thoughts. There is no sharing.
We tend to give people more time as end of life approaches than they actually have. This is also part of our denial. This form of denial is why I wrote Gone From My Sight. I wanted people to see the dying timeline. In recognizing death’s approach, a gift of time is given. The opportunity to do and say what needs to be said, or wants to be said. The gift to address unfinished business. The gift to complete, to say goodbye. By putting our denial aside, we are opening the door to a sacred experience.
Something More… about Denial of a Life Limiting Illness
I urge physicians to offer the support Gone From My Sight: The Dying Experience and A Time To Live: Living With A Life Threatening Illness to patients when treatments have stopped working. Families need to know what signs to look for and what to do when a patient has weeks to months to live.
4 comments
I have worked for hospices that don’t provide Gone From My Sight as a tool, so I actually buy them myself to provide to my patients. I give them as soon as I can after admission; I tell them it’s easier to read it when you don’t see so many of the “signs” in your loved one, and knowledge is power. If you know it’s coming, you freak out less! The Blue Book (as I call it) has been one of my most invaluable tools in helping my families as a hospice nurse. I also use it as a teaching tool when I am orienting new nurses in my program. It has been such an amazing resource to me! Thank you, Barbara!
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BK Books replied:
Thank you Pam for sharing. Have you seen my new booklet about food, Always Offer, Never Force? It and The Eleventh Hour *are companions to *Gone From My Sight. You might find them helpful with your caregivers as well. Blessings to you in the work you are doing. Barbara
I have found denial to be a big problem. My late husband had Alzheimers. I found out, after he died, that he would have qualified for hospice 6 months before he died. NObody told me.
A nurse handed me the GONE FROM MY SIGHT a few minutes after he died. It should have been given to me the day he was admitted to Hospice! It would have helped me and my grown children!
Then last February a dear friend died of cancer. Doctors dilly dallied until he had stage 4, then he listened to them and took chemo even though his liver was shot and the doctors knew it. (He still trusted the doctors to help him.) Up till the moment he died, his wife thought he was going to beat the cancer. All I could do was try to be supportive of them both, which I did. I was there with them when he passed away.
He was in hospice care IN the hospital and I had to ask the hospice social worker to give my friend a copy of GONE FROM MY SIGHT. She gave it to the wife and Alan died about 1/2 hr later!
Bottom line, GONE FROM MY SIGHT should be given AT ADMISSION!
Sorry for the caps. I am not shouting. It is just so important an issue.
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BK Books replied:
Hi Suzanne, thank you for sharing your experience. It is sad for families to not have access to end of life knowledge when hospices and hospitals can so easily provide that guidance. Gone From My Sight *given on admission is exactly how I envision it being used—-with its companion *The Eleventh Hour. Gone explains what is happening. Hour tells what to do while it is happening. Blessings! Barbara
Thank you for writing about denial. I now realize we unfortunately were deep in it. My mom died last fall.
My heart aches reading this, my mom spoke limited English and I was the one that took her to the appointments. She was diagnosed with stage 4 liver cancer and decided not to pursue treatment, but she never asked me medical details and I never told her either.
I figured if she didn’t ask it meant she didn’t want to know? I’m not sure if that was best.
She never asked how long she had to live, how advanced her disease was… she only asked about treatment options.
She never spoke about her feelings (even prior to the diagnosis). After the diagnosis her health declined extremely rapidly, however she never said she was sad, scared, lonely … no talk about feelings.
So we just went on day to day trying to manage her symptoms. She was on hospice at home for about 90 days and died at home.
We did get close during that time, but just in actions, no words. It’s still very odd to me and I regret a lot of things. We never said goodbye with words, just with actions. She never saw me cry and I never saw her cry. I did see her pray a lot constantly, she was doing that even before her diagnosis though.
I still don’t know what to make out of it.
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BK Books replied:
Hi Luna, you might write your mother a letter. Put all the feelings, thoughts and tears down on paper. Tell her what you’ve just told me, tell her what you wish you had done and what you wish you could say to her now. Burn the letter and scatter the ashes to the wind. Let how well you live your life be the gift of love you give her. Blessings! Barbara
Our hospice social worker gave us Gone From My Sight. It has been the single most informative and helpful resource I have. My brother is in his final stages and will be gone before we know it… but it’s been a blessing to give him the gift of caring for him these past few months. I highly recommend Barbara’s resources
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BK Books replied:
Thank you, Lorna, my blessings to you and your brother. Barbara
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