Denial: caregivers and those needing care both experience it

By Tiffany Cloud-Mann, M.Ed.

Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. Elisabeth Kubler-Ross

I think of denial like blinders on a horse or maybe even a brick wall, shielding from us from the inevitable hard terrain ahead, allowing us to address the issue in our own time or possibly never. As counselors, we say our clients know themselves best. That makes a lot of sense, right? We know what we need and when we need it, and if anyone tries to tell us what to do or how to do it, we may comply, but any positive effects from a choice made to soon or for us will most likely be short-lived. I think denial applies to this as well; until you are ready, you aren’t ready. Period.

I see denial on both sides of the street when working with caregivers and those in need of care. For caregivers, denial is that protective agent that keeps us from having to deal with the full effects of what’s going on or what’s going to come regarding the person we love. Denial for the person with the ailment may be their way of also dealing with the loss they are experiencing. For those with dementia, denial may be present early in the disease, but as the disease progresses their judgement and reasoning is affected and their ability for self-awareness has changed.

Caregivers and the person in denial

Although denial may have a negative connotation, I do think it can be seen in a positive light. I will start with the person affected, who has dementia; denial keeps them from having to possibly feel what’s changing about them. Their denial allows them to feel like that are still “normal” and not as sick as they may be. It may make it difficult to provide the care needed, but that is when we employ some great tips, like telling our loved one what they want to hear even if it is a lie, to allow them to feel better about whatever the situation may be. Does it really matter if they understand they have a type of dementia, I would say no. As the disease progresses, as long as they are safe and happy, that’s all that really matters.

Finally, for caregivers and denial, it appears at times that it may be our subconscious protecting us from something that is very hard to come to terms with, and that’s okay for a while. At some point, and hopefully earlier than later, the issues at hand will need to be addressed in ensure that the person needing care is safe and well cared for. And, in regards to dementia again, I ask myself as a professional, “does it really matter if a caregiver understands the difference between Alzheimer’s and dementia?” Yes and no, I suppose. I want you to understand that 70% of dementia cases are due to Alzheimer’s, so that you can understand the progression and the needs that come with it. Sometimes not understanding a disease fully, can leave us in a bit of denial. But, with communication, if you need to change the Alzheimer’s word to something like memory loss or changes in your abilities to allow your loved one affected to get needed help, I think that’s okay too.


Working through and around denial

As denial ebbs and flows with the waves of illness and stress, Care Managers might be the life guards in this scene or the masonries standing at the brick walls, assisting with understanding the waves and breaking down the barriers to care. I see two of my biggest roles in care management are in evaluating safety and supporting the caregiver. Denial is a big part of difficult journeys and that’s okay. Identifying it and finding ways to work through it or around it is my job, and one that I gladly accept.

Please share this email, today, with someone you know that may benefit from hearing these words.



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