End of Life Denial, Decisions and Caregiving

by Judy Morton

End of life denial is a very strong emotion.

We just had a member of our support group leave us. This happens, for a variety of reasons. The reason this time was that the former member became upset at the truth, and left in a fit of pique.

She posted a rant against hospice in general. She posted the fact that if you are on hospice, life-prolonging measures will not be done.

This includes feeding tubes and blood transfusions, antibiotics for infections, tests and surgeries.

This former member is angry, because her mother is dying and she can’t stop that process.

She is in denial, and wants the medical world to help her mother “fight this” and get better. “This” being the process of her mother dying.

Several members in our Senior Caregiver group, including Diane Carbo... tried to gently explain to her what was happening. They tried to soothe her, tried to explain (again) what hospice is and does, but she didn’t want to hear it, and left the group.

Honestly, we feel a certain amount of relief about this. She has been so blind to what we can all see just from reading her posts.

If anyone tries to point out what she’s saying, she gets hostile. But there is a sorrow, too, about her leaving, because we all know that her outbursts come from a place of fear and denial.

This is a good example of something that I know Diane has tried many times to explain, in our group and elsewhere.

Sometimes WE are the ones in denial.

WE are the ones who cannot and will not “let go” of our loved ones.

And we grasp at every little straw, every hint of a straw, to try to hold on to them and keep them here with us.

Sometimes, this denial shows as a refusal to let anyone else take care of our loved ones. In our fear, we believe that ONLY we can “do it right”. Only we can actually hold the illness, the pain at bay, and keep our loved ones from declining.

If anyone else does anything, they will mess something up, and then… and then… the worst could happen. This becomes almost like a superstitious “rule” that we have to follow.

More on End of Life Denial, decisions and Caregiving...

Too many times, denial manifests as only hearing what we want to hear... rather than what the medical team is telling us.

We hear, “Well, yes, you could put in a feeding tube….” as “you should”. And we believe that if only we can get that feeding tube put into mom, we can keep her alive and we’ll all be a happy family again.

Never hearing what a feeding tube signifies. Never understanding what feeding tubes are for. Never understanding that these were meant to be temporary ways of feeding someone .... who could not eat. For some reason they will improve – not a lasting way to live.

Accepting that our loved one is dying... whether it’s a parent, a spouse, a child, or anyone else we are close to – is a difficult thing.

Sometimes it’s a gradual realization and dawning that this is it. This is what’s happening, and you cannot stop it. Sometimes, it hits you like a brick wall, crashing down on you. And you feel overwhelmed with grief and helplessness.

Everyone has to work into this knowledge and come to terms with it in his or her own way. And we all go through the same emotions and stages of grief.

One of the strongest is anger. Where we lash out at everyone around us, including (especially) those trying to help. This is even more common when those around us are not telling us what we want to hear. The anger, the frustration, the helplessness. These will distort our perceptions, and guide our own actions and words, until we can work past them.

Sometimes… sometimes our grief and denial are complicated by a secret feeling that... “if she dies, then I’m free to do whatever I want to do!” – and the guilt we feel for those thoughts.

It doesn’t mean that we love them any less. Just that we’re naturally tired of being in the caregiver role. Tired of the burdens of care, tired of not being able to live a life of freedom.

Even when we choose to live this life of caregiving, very few know what we’re agreeing to at the start. And we certainly never expect it to take up every second of our time, day and night, with no breaks.

But that, all too frequently, is what happens. So then we have guilt, and denial of guilt... on top of the denial of the situation, and subconscious grief that it’s all happening.

Too many caregivers face this kind of grief alone – just as their caregiving has been alone. They will try to find something, someone, to focus the anger that comes with the denial and guilt.

And end up alienating everyone around them. But this is a time when they need to seek out counseling. Need to learn to hear what is really being said, need to allow others to reach out to them.

It is frustrating for us, as caregivers, to see someone hurt so much with their denial and grief and anger. But as caregivers, we have to learn to let them go, and just be there when and if they come back.

Meet Judy Morton

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