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Sharon Hall

We, as dementia care partners, have the difficult task of separating emotionally from the behaviors of dementia.

Sharon cares for her 95-year-old mother, who has vascular dementia, and her husband, who has frontotemporal dementia (FTD).

My husband can have public outbursts due to his FTD. Once I managed to associate all behaviors with his disease, it got easier to handle these in public situations. The one thing that helped me the most was reading “Loving Someone Who Has Dementia” by Pauline Boss. It led me to understand why I had to emotionally separate from the behaviors and assign all negative behaviors to the disease.

As dementia care partners, we have the difficult task of separating emotionally from the behaviors of dementia. This is particularly true in frontotemporal degeneration, which exhibits behavior that is socially inappropriate. All dementias can have behaviors that are socially inappropriate, and dealing with this aspect of dementia is extremely difficult.

The only thing that saves our sanity is to assign all behaviors to the disease. If we carry resentment toward outbursts, bad language, aggression, social disinhibition, etc., we reinforce our negative outlook on the dementia, and we become the perpetrators of stigma.

Answering the same questions over and over and having to explain bad language or outbursts in public becomes embarrassing if we hold on to the belief that they are somehow intentional. Would we look scornfully at a person who is quadriplegic because they can’t open a restaurant door from their wheelchair? Of course not. We would run to open the door, give a smile, and say, “Here, let me help you.”

When my husband has a public outburst, as he did in a trip to a grocery store where he got angry at the cashier and threw the bananas at him and started cursing, I simply turn around to any folks in ear shot and say “Sorry—dementia. I will take care of it”. If they do not have compassion, then that is their issue, not mine. If I can educate and explain the behavior and the associated dementia versus disease issue, I do; otherwise, I go about my business.

Unless we stop blaming the person and start blaming the disease, our lives are full of stress and conflict. We have too many other stressors like finances, medications and help in the home to worry about taking on the stress of trying to control the spread of a degenerative brain disease. Let it go, reduce your stress and educate the public. We must go about our daily lives with no shame.

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