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Denial: A River Of Problems When Alzheimer’s Strikes

We are all in denial about something at some point in our lives. The dictionary defines denial as "the refusal to admit the truth or reality." My favorite definition is "the negation of logic."

I can definitely appreciate someone not wanting to acknowledge a situation or condition. My own grandmother has Alzheimer’s disease. I admit I didn’t "hear" the diagnosis at first because I didn’t want to. I knew what the writing on the wall spelled. My grandfather and uncle were far from admitting it also, so it was up to me to make sure my grandmother received the best medical care possible and fast. Luckily for me, my uncle faced reality pretty quickly—he is a rocket scientist after all (he really is!). My grandfather’s denial, on the other hand, continues to lead to some major problems and almost led to the loss of my grandmother’s life.

What causes denial? Many things: lack of communication, distance, self-preservation, fear of the unknown and uncertainty about the future. Denial, however, leads to the continuation of a downward spiral and makes the diagnosis of Alzheimer’s and dementia even more traumatic and difficult to face.

In any community for the elderly, denial is something we deal with on a daily basis. Our goal is to avert a negative situation for a family dealing with the denial process at home and just beginning to consider assisted living or memory care. We also continue to address denial for a resident on the cusp of needing assisted living or memory care. There was a resident at our community recently who was well loved and happy, but was requiring more care and presenting behaviors that were becoming less and less appropriate for an assisted living environment. Her safety and dignity were our main concerns. I am not a proponent of forcing a move to a different level of care, but if it is necessary, we need to do our best to have the family "buy in" to the move and make the transition as smooth as possible for everyone. If there is no “buy in,” the other alternative is eviction, which is never something I want to have to do. Appropriate placement is critical to proper care. In this particular case, one of the siblings who lived out of town was the one who was able to convey to his local brothers and sisters that what we were saying was true. Because he didn’t interact with his mother on a daily basis, he was able to be more objective and see what we were seeing. Luckily, this family ultimately listened to us, and a move within our community was made. The transition was smooth, and a positive difference was noticed in the resident literally hours after the move.

In the case of a transition to memory care, the environment in our community is a significant aspect of the benefit. Our memory care neighborhood is a smaller, more manageable space that is easier for someone with dementia to navigate. There are also residents in our memory care that used to be in assisted living, so the person moving might see a friendly and familiar face in the memory care neighborhood. This type of situation helps with continuity and adds value in the community.

Denial at its worst can mean the withholding of treatment or necessary care (outside of a residential care community).  We so want to "hold on" to mom or dad as we know them. We want them to maintain their independence. We believe we know what’s best for them. However, for someone in denial, their loved one doesn’t get the treatment or care they need and deserve. Their condition worsens, and quality time is actually lost. It is almost cruel to force someone to remain in a situation that is difficult for them to live in. It fosters frustration, anger, potential loss of dignity and dangerous situations.

In caring for a loved one, you almost have to force yourself to step out of the situation to be objective. There are reasons doctors are not allowed to care for their own family members. Where loved ones are concerned, no one wants to admit and see the potential problems. When evaluating what your loved one truly needs, listen to the professionals, in particular the ones that you trust and have shown you that they care. At our community, there is no financial benefit for moving someone to our memory care neighborhood, other than the likelihood that I will be able to care for them longer because the resident is placed appropriately. In fact, the cost could potentially go down at some point because the apartments are smaller in the memory care neighborhood, and the need for escorting is reduced (though not eliminated).

The bottom line is, you must try to be open-minded. Trust the professionals. Listen to what others are saying. There is a good chance you may be doing more harm than good by trying to keep things the way they are and living on the shores of denial. Acceptance is never easy, but it is the loving and right thing to do for everyone.