Is My Mom Dying?

This question usually comes in the form of a phone call from the one of the children of an elder I represent. This question is always followed by: “and if she’s dying, why won’t the doctors or nurses tell me?”

I struggle each time I hear those questions and this is why.

I believe that those who are caring for a loved one know that death is imminent long before the patient’s physician or nurses. In my experience, it is the family who informs the doctor or nursing staff that their loved one may have started the process of dying and needs a comfort care plan or hospice evaluation, not the other way around.

What are the signs that someone is actively dying?

They include but are not limited to:

  • The patient voluntarily stops taking food and water/fluids.
  • The patient sleeps more than they are awake.
  • The patient is not lucid, or has a hard time focusing or seeing you when they are awake.
  • The patient is weak overall, unable to walk or stand without help from someone else.
  • The patient stops having urine output (they don’t need to go to the bathroom, or their diaper is dry for a day or more).
  • In cancer patients, the patient may also run high fevers and/or have seizures.
  • Some patients tell of seeing spirits of loved ones who have already died; they may even carry on conversations with people we cannot see while we are sitting with them.

Are you seeing any of these signs in your loved one?

Let’s consider some of the reasons doctors and nurses may not tell us that someone we love is dying.

1.  The patient does not want to know they are dying and does not want their doctor to talk about it with their family.

Some people simply cannot emotionally handle talking about their own death with anyone – doctor, religious leader, family. When that happens, we have to take a step back and respect their decision, as difficult as it may be for those who love them.

The patient may refuse to sign the HIPAA release form (in America this is the release form for health information) to allow their physician to discuss their medical condition with family or friends. Unless the patient signs the HIPAA form, the doctor and nurses are not able to answer questions of family members or friends, that’s the law in America.

I have worked with clients who simply refuse to tell their children they are dying because they fear it will bring up painful converstations or start their kids fighting with each other. They just want peace at the end of their lives, so they slip away without ever having to talk about death with their loved ones. In the end, that is a person’s choice to make and we have to accept it, even if we do not understand it.

2. Sometimes medical professionals are punished when they tell a family that their loved one is dying.

A doctor I interviewed for this post told me of one of their worst experiences with being direct with a patient and their family about death. The doctor’s elderly patient was actively dying, there was nothing more to be done to prolong the patient’s life, and to try to do so would cause physical pain. The doctor met with the patient and the family to explain all of this, and offered to enroll the patient into hospice so they could be maintained comfortably at home until they died.

The children of the patient argued with the doctor, they demanded more treatment to keep their loved one alive, and ended up firing the doctor and taking their loved one to the hospital. The patient spent the last few weeks of their life getting painful treatments that had no chance of working – all in an effort to appease their family.

The doctor said it was one of the worst experiences of their career and left them feeling sad and angry for their patient – who sat silent while their children screamed and yelled at the doctor.

We need to stop shooting the messenger! Doctors or nurses who are direct with patients and their families about death should not be punished for that honesty, not by the patient and certainly not by the family.

Maybe we need to make it safe for the doctors and nurses to openly discuss death with us?

3.  Death is rarely predictable.

We also need to understand that death is rarely predictable, even when it appears imminent. I sat with a dear client of mine, Joan, through three different episodes when we thought she was dying and it was a matter of only hours before she was expected to die. Amazingly, Joan rallied twice and came roaring back into her life. The third time, she let go of life and died.

Sometimes death comes close and then the patient rallies and does well for a while. In those cases, we need to know that death can happen at any time and act accordingly. It also means we need education on when death is actually imminent so we are not confused and frightened.

In general, we need to educate ourselves on the signs and symptoms of what a body goes through when it is shutting down and dying either from advanced age or from disease. We used to know these signs because only 1 or 2 generations ago, we cared for dying family members or friends in our homes. We have lost that knowledge of the signs of death, so now we need to learn what death looks like.

4.  Fear of death and loss.

Fear is an amazing and powerful emotion. We sense and feel fear in other human beings. We broadcast our own fear with our body language, our eyes, our voice, maybe even with our scent according to recent studies. If we fear death, then it stands to reason that those we love who are dying will sense our fear. The doctor and nurses caring for our loved one may also sense our fear and hesitate to answer a direct, or even indirect, question about whether our loved one is actively dying.

Or, maybe they have tried to tell you and you cannot accept or hear what they are saying?

Is your Mom dying?

In my experience, when I’m called with the question of whether a client is actively dying, the person on the other end of the phone already knows the answer to that question. They call me because I am someone who will listen, help them think about the situation, and point them toward their next step, usually that means calling the physician for a hospice evaluation.

If you want to ask the doctor or nurse whether your loved one is dying, please stop and think about the situation.

1. Go up to the top of this post and look at the list of signs that someone is dying.

2. Take out a piece of paper and write down all the reasons why you think your loved one is dying, for example weight loss, not eating, not drinking fluids, sleeping more than awake.

3. Then reach out to your parent’s doctor, the nurses or caregivers helping  you, and/or your siblings or friends to see if they see the same changes in your parent – get a conversation going among those who are caring for this person.

Please understand that you may be bringing new information to your parent’s doctor or nurses, or to your own family members when you call about changes you are seeing. But remember, everyone needs that information in order to help support your loved one.

And then get brave, because the person you should ask this question of is the person you think is dying.

Ask your parent if they feel as if they are dying and talk with them about the changes you see in them physically.

If possible, ask them what they want to do about seeing a physician for an evaluation, ask them to tell you what they want to do if, in fact, they are dying.

Ask them where they want to be cared for at the end of their lives.

Elders and people who have terminal illnesses have an incredible ability to sense when their own death is near and we should honor that intuition.

And I leave you where we started, to consider the following observation and see if it rings true for you.

I believe that those who are caring for a loved one know that death is imminent long before the patient’s physician or nurses. In my experience, it is the family who informs the doctor or nursing staff that their loved one may have started the process of active dying and needs a comfort care plan or hospice evaluation, not the other way around.

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11 comments

  1. Paula,
    Excellent article and right on the button in my experience.
    My Mom never had a problem eating or eliminating but she did sleep a lot.
    As I told you I knew she was dying; it was in her eyes.
    She knew it too but we never discussed with each other directly.
    She started referring to me in the past tense and she did tell me she hoped God wasn’t mad at her because she felt she had let some people down in her life.
    Saying goodbye is hard when you love someone.

    1. Debbie, thanks for taking the time to read this post and leave a comment about your own experience – I know it is so hard to reflect back on the death process of a loved one. I do think we know at the time that death is near and it is so painful and difficult to have direct conversations at that time – because, as you so directly stated – it is one of the hardest things we do as human beings – saying goodbye to those we love. Take care.

  2. my mother has been coughing for weeks now, we’ve seen a doctor and they say that it’ll go right over in a day, that was 1 week ago. Is my mother dying?

    1. Hi Hannah, I can’t give you a medical opinion of course, but I can encourage you to seek care for you Mom – if you feel she’s not being given the testing and treatment she needs, then get her to another provider, or even an emergency room. Listen to your instincts, there is no harm in getting another opinion from a different doctor. Best wishes to you all –

    2. My mother is talking to people who aren’t frilly their she’s not taking fluids she can not walk by herself I’ve been taking.care of her for 2 years she resntly started about 2 weeks ago. What do I do w she passes

      1. Christopher, please call your mother’s doctor and ask the doctor’s help. The doctor may want to have you bring her in for a visit. Your mother could have the flu or be dehydrated and need fluids and medications. If she does not have a doctor, please get her to an urgent care or emergency room in your area for help. The doctor/emergency room physician can get you the support services you need, whether that’s home health, medicines, or hospice level care. But please seek care immediately for your mother and tell the medical professionals about your need for help in caring for her. I wish you both well.

  3. I believe my mother is at the end of her life. She is suffering from stage 4 metastatic colon cancer. On October 3, 2015, she underwent emergency surgery. She was not expected to survive. She bounced back. On December 3, 2015, she was hospitalized due to sepsis. Doctors believed she had at most two days. Incredibly she survived. She is about to be released from the hospital. At this point, I am feeling extremely sensitive about her passing in my house. I cannot control my fears. I have been reading to try easy my pain and fears, to no avail.

    Any advice?

    Anticipated thanks

    Providencia

    1. Hello Providencia, I can well understand your concerns about taking your Mom into your home when she has been so ill and in pain. I suggest you talk with the doctor or social worker at the hospital as soon as possible about discharging/releasing your Mom under hospice care to either a dedicated hospice facility or a nursing home where hospice care can be provided. If you can arrange for her to go to one of those facilities, then you can be with her when you can and be assured that she is getting the physical support and pain medication she needs. There should be someone at the hospital who can help you with those arrangements. I hope this is helpful information for you. You might also read my blog post on What is Hospice? How do I get it? You can contact me at pjmccann60@gmail.com if you need further advice.

  4. My mom is 87 with tons of comorbidities. She has had countless emergency visits, hospital stays & rehabilitation admits in patient & out patient due to falls, exacerbation of respiratory issues, fluid & electrolyte imbalances, cardiac issues & urinary tract infections for the last 15 years that I’ve been caring for her. In addion to her anxiety and depressesion her eating pattern, sleeping pattern, bodily function & physical mobility partterns go from one end of the spectrum to the other. The doctors have told me on many occasions to get a plan. Hell, they don’t even know!!! This woman (a Saint I must say) is overwhelmed with the fear of dying. When I look at all that she has endured I envy the fight yet I hate the struggle. I am the only one of her 8 children that does anything and everything for her. She was physically, mentally & sexually abused by my father. I feel the only reason she is still living is the fact that her fear of dying is greater than the will to give up. You can read anything about signs of death all you want but the reality is even if all the odds are stacked againts you your mind is a powerful thing and can trick even the most knowledgeable medical professionals. I can’t believe what I’m living, seeing & breathing in caring for her. There has only been one other person in my lifetime i was associated with while i was working at a nursing home who lived long past the medical professionals opinions. Why? Because she was afraid of dying according to her daughter who was a nurse.This woman who had had a stroke was not expected to live. Yet, she could not speak, eat or function. She laid in a hospital bed for 8 years before she went to the pearly gates. I just couldn’t believe it but now, I see first hand how fear is the real gate keeper. Maybe all death amd dying experts could include the fact that fear plays a huge factor In the dying process.

    1. I totally agree with you, Maryanne! Fear of anything is a huge factor that has a real impact on the body. Fear of death is something that needs to be considered when helping anyone who is dying. The ability to be truthful with oneself about fear and communicating those fears to others is the first challenge I see in many of my clients. I have had people fear death because they believe they were “bad” during their lifetime and will be punished in the afterlife. I’ve had clients fear death because they have issues left unresolved, or things undone. Whatever the reason, in my experience, it takes a patient being willing to acknowledge that they hold that fear before anyone can help them with it. And sometimes it takes a neutral, professional outsider (counselor, religious person, social worker, hospice provider) to help them give a voice to their fear, as parents and spouses usually do not want to admit that weakness to those they love. Thank you for so eloquently describing this issue for everyone to consider, your comments are truly appreciated.

  5. Life is uncertain and so is dying. Predictions are just predictions.

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