Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My sister has it. She also has aphasia like BW. It’s an awful disease. A once tactful, smart, funny person started saying and doing odd things, no filter, etc. We had no idea what was going on at first. She was fired from jobs for being inappropriate and we just couldn’t understand, it was so out of character.

She hasn’t been destructive but as time went on, she started doing things like putting wrong things in the refrigerator, couldn’t use the phone, didn’t understand how to do basic things like shower, was very frustrated and agitated as she progressed into one or two word answers, when she would answer. Lots of just staring at you. She eats a ton because she doesn’t understand when to stop anymore. She has seizures. It’s an awful thing for her kids and husband to see. She was robbed of her life.

I’m so sorry, PP. How old was she when it began?

Also, is she in a care facility, or at home with family?

This is PP. She started showing symptoms mid-40s and was diagnosed with all sorts of mental health issues; it wasn’t until she was 49 that she was correctly diagnosed. She is now 52. She is still at home but has daily care come in. She will most likely soon have to live in a facility, as she is starting to fight care at home and refuse to do lots of things. It is also potentially dangerous because she is around all sorts of things she could grab to hurt herself. I don’t know how much longer her husband can hold on.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It was so frustrating that even experts like my mom’s neurologist was pushing for her to see a therapist to deal with her symptoms (paranoia that my dad was cheating) even though it was becoming obvious that she had some form of dementia.
The mental health symptoms in more common dementia happen much further along the Alzheimer’s disease trajectory. So once they are seen, it is obviously due to Alzheimer’s. But with FTD, since the main markers for Alzheimer’s like dementia don’t happen until later, and all you see is mental health issues, they have no idea how to deal with it.

PP, do you mean that with FTD the symptoms like paranoia or delusions show up before traditional symptoms like forgetfulness or other, more common Alzheimer's symptoms? Can you advise of timeframe, how long before the others show up and what to look for? I feel like my uncle might be in this situation but will not see a doctor and says he is "fine" and by all basic observation seems fine but who knows.

NP- my mom had this in her 50s and her judgement was first to go. She drove too fast. Ran yellow lights. And paranoia showed up. Her work place forced her to retire. MD’s didn’t know what it was and lumped it into the dementia category. Her ability to speak left next. It was a long long and tragic decline. She lived til 72.

Did she stay at home or go to AL or MC?

Anonymous wrote:

Anonymous wrote:It was so frustrating that even experts like my mom’s neurologist was pushing for her to see a therapist to deal with her symptoms (paranoia that my dad was cheating) even though it was becoming obvious that she had some form of dementia.
The mental health symptoms in more common dementia happen much further along the Alzheimer’s disease trajectory. So once they are seen, it is obviously due to Alzheimer’s. But with FTD, since the main markers for Alzheimer’s like dementia don’t happen until later, and all you see is mental health issues, they have no idea how to deal with it.

PP, do you mean that with FTD the symptoms like paranoia or delusions show up before traditional symptoms like forgetfulness or other, more common Alzheimer's symptoms? Can you advise of timeframe, how long before the others show up and what to look for? I feel like my uncle might be in this situation but will not see a doctor and says he is "fine" and by all basic observation seems fine but who knows.

NP- my mom had this in her 50s and her judgement was first to go. She drove too fast. Ran yellow lights. And paranoia showed up. Her work place forced her to retire. MD’s didn’t know what it was and lumped it into the dementia category. Her ability to speak left next. It was a long long and tragic decline. She lived til 72.

Anonymous wrote:If anything, dementia, Alzheimers and other neurological issues should compel us to live life with more vitality, love, passion, enjoyment and appreciation. I worked in an Alzheimer clinic and many patients were more of a burden than anything. I have learned to take the opportunities, have the fun and live in the moment. Aging is unpredictable.

+1,000,000. This is also something to remember if your loved one becomes abusive toward you. Get the proper care and remove yourself from the situation. If it's a parent, this could be your fate. Rather than spending the next 5-10 years being on the receiving end of abuse, live your life with love and vitality. Model boundaries for your children and give them all the love they deserve. They can learn we ensure the safety of our loved ones, but we don't allow loved ones to harm us ever. I am writing out detailed instructions to my children if I too become a monster. There will be money to ensure I can get proper care in Memory care, but they are not to allow themselves to be hurt by me. I want them to know how much I love them and want them to be happy. If I become abusive, I give them permission to step away and just send me to a good memory care. If the memory care cannot medicate me properly so I am not abusive, I give them permission not to visit. The abuse can literally kill you and I will not do that to my own children.

If anything, dementia, Alzheimers and other neurological issues should compel us to live life with more vitality, love, passion, enjoyment and appreciation. I worked in an Alzheimer clinic and many patients were more of a burden than anything. I have learned to take the opportunities, have the fun and live in the moment. Aging is unpredictable.

Anonymous wrote:It was so frustrating that even experts like my mom’s neurologist was pushing for her to see a therapist to deal with her symptoms (paranoia that my dad was cheating) even though it was becoming obvious that she had some form of dementia.
The mental health symptoms in more common dementia happen much further along the Alzheimer’s disease trajectory. So once they are seen, it is obviously due to Alzheimer’s. But with FTD, since the main markers for Alzheimer’s like dementia don’t happen until later, and all you see is mental health issues, they have no idea how to deal with it.

This is so important to mention. With my mother the paranoia and outbursts came before major memory less. I have had a pretty peaceful relationship with her for over 45 years and yet others believed her when she became paranoid blaming me for everything. Sibling jumped right on that bandwagon. Now I am blocked from knowing anything about her health. She took away the release of info because I called doctors with major concerns. I have lost the support of extended family. Now that I am blocked off, she has outbursts at others, but they just blame me for upsetting her. I have done nothing to her. It is crazy making. Now there are signs short term memory is slowly falling apart, but again now others blame me for stressing her out with all the terrible things rather than assuming it's dementia. I allegedly did. I doubt if she ends up in the hospital I will be able to visit her. I have already mourned her over the years she has slipped into hostility, volatility and paranoia. The person who lives in her body is a stranger who despises me. I have been truly stunned by how neurologists don't even think about the possibility of FTD-behavioral variant and they just jump to psychological only. Perhaps the medicating would be the same-treat the anxiety and paranoia, but maybe I would still have some remnant of a relationship with mom if others knew this was a serious disease talking, not a daughter who suddenly transformed into a totally different person. I can't even imagine at this point ever going to her funeral. I don't want to see all the people who were quick to turn on me, especially the sibling who fed right into it for benefits. I already mourned a parent who went from being a mom to seeing me as enemy number years ago as her descent into insanity began.

Anonymous wrote:It was so frustrating that even experts like my mom’s neurologist was pushing for her to see a therapist to deal with her symptoms (paranoia that my dad was cheating) even though it was becoming obvious that she had some form of dementia.
The mental health symptoms in more common dementia happen much further along the Alzheimer’s disease trajectory. So once they are seen, it is obviously due to Alzheimer’s. But with FTD, since the main markers for Alzheimer’s like dementia don’t happen until later, and all you see is mental health issues, they have no idea how to deal with it.

PP, do you mean that with FTD the symptoms like paranoia or delusions show up before traditional symptoms like forgetfulness or other, more common Alzheimer's symptoms? Can you advise of timeframe, how long before the others show up and what to look for? I feel like my uncle might be in this situation but will not see a doctor and says he is "fine" and by all basic observation seems fine but who knows.

It was so frustrating that even experts like my mom’s neurologist was pushing for her to see a therapist to deal with her symptoms (paranoia that my dad was cheating) even though it was becoming obvious that she had some form of dementia.
The mental health symptoms in more common dementia happen much further along the Alzheimer’s disease trajectory. So once they are seen, it is obviously due to Alzheimer’s. But with FTD, since the main markers for Alzheimer’s like dementia don’t happen until later, and all you see is mental health issues, they have no idea how to deal with it.

I’m pretty sure the principal of our school has it. They said inappropriate things, forgot names, and much more. They were fired.

My mother has aphasia, we are not sure what else/what the cause is. She gropes for words and has trouble controlling her emotions. Mostly we are (so far) doing OK placating her. She can't cook anymore, shouldn't be going up and downstairs, and can't shower unless someone is home due to dizziness.

it's very frightening because I don't know what is going to happen. I live far away and have young kids. Don't know how to best help her

So afraid one day I'm going to get a call that she fell down the stairs or burned the house down with the wood stove.....

Anonymous wrote:

Anonymous wrote:My sister has it. She also has aphasia like BW. It’s an awful disease. A once tactful, smart, funny person started saying and doing odd things, no filter, etc. We had no idea what was going on at first. She was fired from jobs for being inappropriate and we just couldn’t understand, it was so out of character.

She hasn’t been destructive but as time went on, she started doing things like putting wrong things in the refrigerator, couldn’t use the phone, didn’t understand how to do basic things like shower, was very frustrated and agitated as she progressed into one or two word answers, when she would answer. Lots of just staring at you. She eats a ton because she doesn’t understand when to stop anymore. She has seizures. It’s an awful thing for her kids and husband to see. She was robbed of her life.

I’m so sorry, PP. How old was she when it began?

Also, is she in a care facility, or at home with family?

Anonymous wrote:My sister has it. She also has aphasia like BW. It’s an awful disease. A once tactful, smart, funny person started saying and doing odd things, no filter, etc. We had no idea what was going on at first. She was fired from jobs for being inappropriate and we just couldn’t understand, it was so out of character.

She hasn’t been destructive but as time went on, she started doing things like putting wrong things in the refrigerator, couldn’t use the phone, didn’t understand how to do basic things like shower, was very frustrated and agitated as she progressed into one or two word answers, when she would answer. Lots of just staring at you. She eats a ton because she doesn’t understand when to stop anymore. She has seizures. It’s an awful thing for her kids and husband to see. She was robbed of her life.

I’m so sorry, PP. How old was she when it began?

My sister has it. She also has aphasia like BW. It’s an awful disease. A once tactful, smart, funny person started saying and doing odd things, no filter, etc. We had no idea what was going on at first. She was fired from jobs for being inappropriate and we just couldn’t understand, it was so out of character.

She hasn’t been destructive but as time went on, she started doing things like putting wrong things in the refrigerator, couldn’t use the phone, didn’t understand how to do basic things like shower, was very frustrated and agitated as she progressed into one or two word answers, when she would answer. Lots of just staring at you. She eats a ton because she doesn’t understand when to stop anymore. She has seizures. It’s an awful thing for her kids and husband to see. She was robbed of her life.

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.