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RedCrush Asked March 2019

FIL with frontotemporal dementia and out-of-control anxiety and behaviors. Any advice?

My husband and I are caring for my FIL with frontotemporal dementia. He was diagnosed last year, but we know he was suffering from this for years pre-diagnosis.


We helped my MIL and FIL for six years in their home between my MIL's first stroke and when she passed away. We didn't live with them, but we did stay with them for extended periods during my MIL's many hospitalizations and surgeries. She passed away in 2017, and without her masking my FIL's behavior he grew to become out of control. It got so bad his longtime neighbors were hiding from him and pretending they weren't home when he'd knock on their doors.


He's been in 5 facilities in 10 months, he's been kicked out of 4 facilities for his behavior, such as aggression, violence, sexual assault of a fellow patient, repeated elopements (yes, he escaped from 2 different memory care units multiple times--he's clever and unlike Alzheimers and perhaps other dementias he still retains his short-term memory and spatial awareness), refusal to take medications.... I'm sure I'm forgetting something in there.


It's been 10 months of unbelievable stress and emotional and physical exhaustion. I thought it was difficult to care for my MIL, but he is 10,000 times more difficult.


We have been taking care of their finances for years, because they'd lost the ability to comprehend bills and statements. My husband has medical and financial POA's, but that doesn't help when my FIL repeatedly fakes heart attacks to 'escape' from his nursing homes and ends up in the ER telling outrageous lies about us and his facility staff. Such as we are stealing from him, that we locked him up in jail, that his nursing home is starving him, that the carers hit him on the head with something (easily disproved because of the nursing home's cameras, luckily). We have done everything by the book, btw, and have even involved an elder care lawyer when setting up his finances because we did not want to make any inadvertent mistake.


I can't even begin to tell everything we've been through all at once. It's been a year and a half of sheer stress. I guess I unloaded both barrels into my first post. I've been lurking for months and just decided that I needed to add my flavor of stress to the overall dish. :) I don't have a 'question' so much as a plea for understanding and am wondering if anyone else has dealt with a case like this. Thanks for any comments.

NYDaughterInLaw Mar 2019
A court can decide that he's a danger to himself and others, which will enable your husband to place his father into a neuropsychiatric facility. He needs a neuropsychiatric facility because he cannot be managed safely in the community or in a regular hospital.

Placing a loved one into a facility is a hard thing to do; however, the peace of mind that will come with knowing that he is getting the intensive level of care that his disease needs, hopefully will outweigh the feelings of grief associated with caregiving for someone whose needs are so much more than you and your husband can provide.

vegaslady Mar 2019
Find the FTD support group online as they have much better experience and resources for this specific dementia. Look for AFTD, Association for FrontoTemporal Dementia, excellent group.

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RedCrush Mar 2019
I forgot to say that he’s been on two 5150 holds in the past few months, where they adjusted his meds. But he showtimes, and the psychiatrist was conservative with the meds. And just a few minutes ago, we got a call from the geriatric clinic that they’re going to taper him off the Ativan because it’s a high-risk medication. Also, he refuses to take his medications which is his right.

We’ve called 911 several times when he’s been threatening, destructive, etc., yet the police do not arrest him, probably because of his age. Also, he does not act aggressively when the police are there. Believe me, we have tried it all.
worriedinCali Mar 2019
He is elderly and has dementia. Of course the police aren’t going to arrest him! I hate when people here tell you to call the cops and have him arrested! Jail is not the right place for him. The legal system is not the right system to help him. The police can take him to the hospital on a psychiatric hold (and that is NOT an arrest). He needs to be placed in a psych facility where they can get his behavior under control using medication. Once his behavior is under control-and that can takes few months because they have to figure out the right meds and doses-he can hopefully be placed in a memory care unit.
JoAnn29 Mar 2019
He needs more care than a regular LTC facility can give. Is there no Psychic facilities near you? They would try different meds until they got the right mixture. Really surprised he wasn't charged with assult charges. This would have given the cops a good reason to have him held in a Psychiatric facility for evaluation. I think his type od Dementia is known to cause violent tendencies. If he ever is violent to anyone, have him arrested and taken for evaluation.

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