Reply to Your thoughts on this opinion piece on Frontal Lobe dementia?

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[quote=Anonymous]https://www.cnn.com/2023/03/25/opinions/bruce-willis-frontotemporal-dementia-experience-salasel/index.html

My first question is do we know that Bruce Willis has the behavioral variant type of FTD? That is the type where they lose empathy and can be quite awful in behavior. I thought he had the other type of FTD, yet this opinion peace shares a story of behavioral variant which I know first hand.

I think this person's story for CNN was both important and triggering. He was incredibly fortunate him father was not overtly cruel or physically aggressive to him and he was fortunate he and his sisters were on the same page. I think it's lovely they cared for the father this way, but I worry that it might inspire others to endure fart more abusive situations for "family." I wonder how this man would have handled it if his father was abusive with the disease. I was triggered by his whole part about how in his culture family is the most important thing and they would never consider not caring for his father personally. Many of us come from these cultures and family emphasis can turn into an excuse for abuse. Many of us have faced a parent who became abusive with dementia (and in some cases the parent had those tendencies in milder form pre-dementia). In my case my parent like he mentioned had enough memory to be not seem like typical dementia to providers for long enough, but in my case a sibling would not unite with me to push for further evaluation. I had a parent who was clearly acting out, losing friends, being abusive toward me and was considered cognitively fine and my hands were tied. Thank goodness I was able to get an agency involved so somebody was evaluating. I got blocked from knowing anything about my mother's condition. Paranoia set in and I was the villain for pushing mom to get an evaluation while another sibling, once estranged from my became close and reaped financial rewards. I had been close prior, but in retrospect I wonder if it was because of my father I could be close with both of them. He was always the more reasonable one.

In retrospect i am pretty sure my grandmother had FLD-behavioral variant as well. It was only in a residential facility where they could finally make sure she was medicated enough not to abuse. I think people forget about the abuse factor when they claim every facility medicates the elderly into zombies. They will collaborate with families. My grandmother absolutely needed multiple medications to sedate her into being respectful of others. It was a blessing. Nobody should have to endure endless insults, scratches, shoves, biting just because someone has a brain disease.

I applaud raising awareness for FLD behavioral variant and the frustrations families face, but I urge anyone dealing with a family member with this to get therapy and figure out what your limits are especially if you come from a culture where you are not allowed to think of any option, but enduring verbal and physical abuse because it's a parent. I think the narrative should be we must make sure our parent is cared for, not that we must do the care at all cost.

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