Yeah, you're ill, but you're still being a nightmare...
November 11, 2013 8:31 AM   Subscribe

I posted this question back in May, about my father's strange (and awful) behaviour that seems to be driven by some kind of illness. Things have not improved. Part of me says, "you should be there for him, it's your dad and he's obviously ill"; another part says "he's behaving like a monster, cut him out of your life." How do I determine which part to listen to?

The background is in my previous question, but in short: my father (in his 60s) has been behaving less and less like himself over the past year or two. He spends most of his non-work time in bed; he has lost all interest in things that have always brought him enjoyment (hobbies, friends, family); he will devote hours to ruminating or ranting about how terrible his life has been and continues to be; his concentration is seriously impaired, to the point where he seems distracted and unable to follow a conversation much of the time (will reply with total non-sequiturs); he is spending and borrowing money impulsively; he has become worryingly forgetful, to the point where several times he has left the house with the door not only unlocked but wide open.

Most worrying to me and my brothers (all adults living some distance away), he has been and continues to be verbally abusive to my mother, haranguing her constantly and blaming her for all the ills in his life. Really nasty stuff, even complaining about how she walks because it annoys him. He wants to get a divorce, sell their house, and split their joint assets with most of the money going to him - but he refuses to move out himself, or to speak to lawyers about a formal separation.

The good news, such that it is, is that my mother absolutely has our support and has taken steps to take care of herself as best she can. She's spoken to a solicitor about protecting herself financially, she's spoken to a counsellor, she's been reaching out to and spending time with her friends. She has an open offer to come and stay with any of us children whenever she likes and for as long as she likes. But she doesn't want to leave the house she's been in for 40 years, or get a divorce. My father refuses to move out, for a variety of excuses (seriously, the latest one was "I don't want to live in some rented place that doesn't have an iron"), and just continues to harangue her.

He's acting totally unlike the father we've known all our lives, who was kind and thoughtful and devoted to our mother and us. This really is a total personality change, and I am seriously worried about his mental and/or physical health. But, he refuses to admit there is any sort of problem with him, and he refuses to seek any sort of help.

We have tried appealing to him - with concern ('you seem so unhappy and unlike yourself'), with constructive suggestions ('you haven't done [hobby] for a while, why don't we do that together?'), with factual stuff he can't deny ('you forgot my birthday last week and you left the house unlocked yesterday, what's up?') with more direct pleading ('you are sleeping all the time, you have lost interest in all your hobbies, you are behaving weirdly to your family, you are fixated on negative things, please go and speak to your doctor about depression'), with appeals to reason ('look, I drew up this budget sheet for you, you have £X in savings and an extra £X coming in each month on top of outgoings, why do you still think you are desperately broke and poor?'), with appeals to empathy ('remember when you were really worried about [brother], and told him so and told him to see a doctor, and he did and he got better? Now I'm worried about you, the same way you were worried about him'), even getting angry and yelling at him. Nothing works. Either he maintains there's nothing wrong, or he accuses us of emotional blackmail, of not understanding him/his life/how hard he works, and so on. It is very, disturbingly clear through these conversations that his reasoning circuits are just not working right, and that you can't reason with him. If pushed, he will just walk out of the conversation and refuse to talk to you for weeks. (He is currently communicating with one of my brothers only via text message, and with me only via Flickr comments.)

I have also written to his GP to outline my concerns. The GP was worried enough to call him in for an appointment (I'm not sure how), and revealed during that appointment that I'd written the letter. Dad was furious with me, has complained to everyone else about me doing this (although curiously has never confronted me), and maintains that the doctor told him he was 100% healthy and had nothing to worry about (which... I doubt, but whatever).

So, on the one hand: he's behaving terribly, he seems less and less interested in me and my siblings or the rest of humanity anyway, and I've done all I can. So even though I maybe can't directly confront him about his behaviour to my mum (he doesn't do any of it in front of us, so her view is that if I yell at him then he'll know she told me and it'll make things worse for her), I can just cut him off and say "I'm not even interested in speaking to you right now, you are acting like a terrible human being for whatever reason and I've just had enough", right?

But, on the other hand - it's my dad. And it's my dad who, to me, seems very obviously ill and in need of help, whether or not he admits it. Practically, there's nothing I can do for him - but, what if withdrawing further from him will make him more isolated and less likely to seek help and support, if he ever gets to a point where he's willing to do that? If he starts to recover from this at any point in the future, it would make me so, so sad and worried to think of him facing that on his own, having spent all his money and sold his house and divorced his wife and no longer being on speaking terms with his children.

I don't know. Is it unethical to angrily distance yourself from a relative who is vulnerable and ill, even if that illness manifests itself in awful behaviour, and tell them why you're doing it? Or is that okay? I could just withdraw from him totally and say nothing about why, I suppose, but that seems like the worst of both worlds.
posted by smockpuppet to Human Relations (19 answers total) 2 users marked this as a favorite
Oof. I'm sorry you're going through this. IANAD, buuuuuuut... if I were a betting person, I'd DEFINITELY bet that your dad has either some sort of severe mental illness, OR some sort of neurological condition... possibly/probably both.

You really have one choice: you can decided "Yes, This Is My Problem", or "No, This is NOT My Problem". Neither choice is any more/less valid than the other... it all depends on you, your morals, what you're comfortable doing, what you're ABLE to do.

If you decide "This Is Not My Problem": you remain present and supportive for your mom, but you do not intervene in any way with your dad, and you distance yourself from him.

If you decide "This IS My Problem", you and your mom and siblings consult a doctor AND a lawyer and see what your options are for forcing your dad to get help. This is difficult but not impossible - IANAL, either, so I'm not sure what it involves (getting a conservatorship, maybe?). If your dad's personality change and behavior really ARE that severe and erratic, he's a potential danger to himself and others, and I'll bet the GP might be willing to vouch for this.
posted by julthumbscrew at 8:41 AM on November 11, 2013

In the US, we could request Baker Act intervention. Is there something similar in the UK? An involuntary commitment for mental health evaluation.

It will suck, he will be angry, but if there's an onset of Altzheimer's, dimentia or discovery of a brain tumor, at least you will all be informed and in the way of providing the correct care.

What did the GP do in the appointment? Also, kind of unethical to reveal that info, no? Perhaps a follow up discussion with the GP.

If all physical issues have been ruled out, then what you have is a bitter old man, and if that's the case, you may decide that it's best to leave him alone, as he's requested.

I'm sorry you're going through this.
posted by Ruthless Bunny at 8:44 AM on November 11, 2013 [3 favorites]

IANAD, but all of this behavior is consistent with Alzheimer's or dementia. You really need gone figuring out long term care for him, not a new apartment. You also need to speak with his GP and find out the next steps. I have no idea if the doctor can tell you what happened in the appointment, but he can advise you o how to proceed.

As hard as it is, you can't blame him for this illness. You need to have him put into care so that he won't be a danger to himself or your mum.

Good luck.
posted by mrfuga0 at 8:50 AM on November 11, 2013 [10 favorites]

Sounds like it could be the beginnings of dementia. It manifests as aggression at the start rather often.

He wants to get a divorce, sell their house, and split their joint assets with most of the money going to him

You should look into the possibilities of something like a legal guardianship / conservatorship, yes. I don't know the UK terms, but here in France, which has similar setups, it's possible to get a range of third-party oversight in partnership with a designated family member, provided by government healthcare. The least "invasive" involves a GP sending the person for a specialist (in this case, probably psychiatric) evaluation to see just how capable they are of handling their own affairs. Especially financial, double-especially when other family are directly involved and put at risk. It always starts out with the ill person being put under conservatorship for a short period of time, after which the case goes before a medical judge in order to determine when (not if, but when) the conservatorship will end, and what therapy is being used to achieve that; they listen to the therapists/psychiatrists, family, and everything. It can get bad enough that a person is judged incompetent and unlikely to improve, but it takes a lot of time, a lot of repeated proof of inability to handle oneself, et cetera. I describe all that just so you won't fear your father having all his power taken away at once; hopefully the UK is similar enough in that regard. Steps are usually taken with a view towards recovery at first, and permanent guardianship as a last resort.

I think you should try talking to his GP; if they're unable to inform you for legal reasons, they will tell you so. They should also, at least, be able to advise you on steps you could take towards guardianship/conservatorship.

All the best. It's never easy.
posted by fraula at 8:53 AM on November 11, 2013 [2 favorites]

He's acting totally unlike the father we've known all our lives, who was kind and thoughtful and devoted to our mother and us.

But, on the other hand - it's my dad. And it's my dad who, to me, seems very obviously ill and in need of help, whether or not he admits it.

Fast forward ten years and try to imagine how you will feel then with the choices you make today. I think if you put yourself out, stand by your dad - who from your description seems to be having mental health issues - and do your best to help the old man out, you can look back in ten years' time and say you did your best, you didn't bail when the going got tough, and you won't be having any regrets or any burden of guilt to carry.

Good luck.
posted by three blind mice at 8:58 AM on November 11, 2013 [5 favorites]

Response by poster: I'm not sure what else was/wasn't said at that GP's appointment - due to patient confidentiality his GP won't discuss my dad's care with anyone without my dad's permission. The GP's position on him before that letter, as much as he would say to my mother (who shares the same doctor), is that it certainly seems like mental illness of some sort but there's nothing they can do if my father refuses to accept medical help. I don't know why the existence of that letter was shared with my father - I did specifically ask the doctor in the letter not to do that.

I do know that the appointment was a normal GP appointment, which is why I very much doubt the GP sent him on his way with a clean bill of health. I know a little about the medical procedure for evaluating older people with memory issues - I used to work in the care system with dementia patients - and it cannot be done by a normal GP at a normal appointment (they refer on to a specialist and/or memory clinic to get or rule out a diagnosis).

Less usefully, though: I don't think he is presently enough of a danger to himself or others for legal steps to be taken to get him evaluated or treated against his wishes, and that's again from my own experience working with early-stage dementia patients who were taken into care. My dad can still hold down a job, and can still act normally and seem totally reasonable in front of others. There's definitely something bad going on with him (I actually doubt it's dementia, but that's definitely a possibility), but from what I've seen of what stage patients needed to be in before steps could be taken without their agreement, they had to be less functional than this. But I will investigate the possibilities of guardianship/conservatorship all the same; there might be something we can do.
posted by smockpuppet at 9:06 AM on November 11, 2013

I don't have direst experience with this situation, but if I were in your shoes I think I would start with a facebook group or a local support group and see what people with a few years' experience suggest. They may have good ideas about how to get your dad started in treatment/testing, and be knowledgeable about the laws in your area. And they can help you and your family learn to cope on a day-to-day basis. Best of luck.
posted by vignettist at 10:10 AM on November 11, 2013

I think a lot of this would sound familiar to people with late onset mental illness in their family (in my family's case, it's Huntington's disease, which ticks a lot of these boxes as well). One of the frustrating things about dealing with these kinds of conditions is when people refuse to get help. Both your parents need your support; your mother needs to know it's okay for her to take care of herself too. Whether she chooses to leave him or not she needs to make sure he can't destroy her finances as he acts out; definitely consult both a divorce attorney and an attorney specializing in eldercare issues as soon as you can.
posted by gerryblog at 10:16 AM on November 11, 2013 [1 favorite]

Your mother should seek an attorney's counsel about protecting joint assets. Specifically the house, retirement accounts, investment accounts and bank accounts. Just because he earns the money, it doesn't mean it's all his. Don't let him spend down the accounts, or encumber the house in debt, or run up all the credit cards.

You may be looking into a conservatorship but your Mom needs to be on top of ALL of the financial stuff, because your Dad could sink her into a world of debt rather easily.

First step, put a hold on any new accounts that might be opened. But yes, lawyer, now.
posted by Ruthless Bunny at 10:30 AM on November 11, 2013 [3 favorites]

It might be helpful for you, your mother, or both to have a consultation with a psychologist (or even a neurologist) with expertise in helping this type of patient. Not to directly treat or diagnose your father, but because such a person should be able to give you advice about: possible ways to persuade your father to accept medical treatment, legal and medical resources available in such a scenario, and how to cope with the difficulties all this is causing for you. They should be able to give you guidance on dealing with a person in this kind of impaired mental state based on the symptoms and behaviors you described here.
posted by unsub at 11:40 AM on November 11, 2013

I would also suggest going back to the GP, explaining precisely how your father's emotional/mental issues are presenting (the demented are very good at hiding these issues in the early stages, especially if they know they're being evaluated), and ask for a referral to a neurologist. Emphasize that the GP should not say anything about your involvement.

Perhaps there's some way you can get your father around to seeing a neurologist, but your mother must accompany him so the diagnosis, if there is one, can be shared.

I'm not saying any of this will be easy. There will be a certain amount of deception necessary on your part to get him proper care, and that will be hard to do, since the dementia makes people paranoid and distrustful.

Good luck to you and your family.
posted by suelac at 11:42 AM on November 11, 2013

Since you used to work in the care system, the first thing I would do is get in touch with your old contacts, in an unofficial capacity, and ask if they know anyone who knows someone who knows what to do.

I understand the frustration of not being able to find out what you need to know to help a relative. My mother was present at my father's appointments when he got a brain tumour, but his expressive speech was shot, and my mother was simply not capable of understanding or passing on to me anything told to her by the medical staff, who themselves were extremely poor communicators.

The way I was able to figure it out, over time, was by asking someone I knew who, as extreme good luck would have it, worked in the NHS system and had extensive knowledge of neurology but was not a doctor. I would take what information I was able to piece together, relay it to them, and they would help me figure out what was probably going on (medically and bureaucratically) by a process of elimination. They were right more often than not, and since they knew the system very well, I was able to go back to the medical staff equipped with the right questions and buzzwords, and although it was a convoluted and tortuous process it did eventually lead to his getting signed up for appropriate treatment. I should add that this was treatment he was entitled to, but the NHS don't always follow their own standards and in my father's case they might never have even diagnosed him if I hadn't been advocating for him.

I should add that my father did see a GP, who chalked it up to stroke, which meant that without my intervention he would have been seen by a specialist after a leisurely six months, or perhaps longer. FYI, he died after five months, which would certainly have made it easier for the NHS if only we'd left them alone, but that didn't mean we as his family were equipped to deal with his rapid deterioration unaided. I don't know precisely what you can do about this, but I would not suggest that you assume that because your GP has taken a quick look at him you are powerless to escalate this.

Basically, I strongly suggest that you start aggressively calling organisations like Age UK as well as dementia support groups to try to find leads. I would also strongly suggest that you call up everyone you ever heard of. You never, ever know who is going to be the one to turn up information that will help you.

He is your father. I cannot in good conscience tell you to dismiss him as an asshole and walk away. I also can't in good conscience tell you to decide it's not your problem for any reason. Unfortunately it is, and you may actually be the only responsible person advocating for him. You might not be able to do much to help, but you can't give up until you've tried everything. I was not able to help my father, but I did do everything I could and he died knowing that. In the end, those are the best terms on which any of us can part from those we love.
posted by tel3path at 1:19 PM on November 11, 2013 [4 favorites]

I would like to add: please don't assume it's dementia, you don't know that, and your GP might not be equipped to tell much either.
posted by tel3path at 1:28 PM on November 11, 2013

It sounds like you already know this OP, but for reference for anyone who may stumble across this thread and need it, here is some info on being sectioned under the Mental Health Act in the UK.
posted by triggerfinger at 5:38 PM on November 11, 2013

I am not a doctor; I am no kind of health expert. And in fact you may know more about dementia than I do, because you used to work with dementia patients. But I cannot pass this thread by without stopping to tell you that to me these symptoms seem like a textbook case of frontaltemporal dementia, sometimes also called frontotemporal lobe dementia or frontotemporal lobe degeneration, and abbreviated as FTLD. The reason I know the list of common symptoms that my own mother, who is in her 50s, was recently diagnosed with early stage FTLD. Apparently up until recently the prevalence of FTLD was not well-recognized, and a lot of cases of FTLD were being missed altogether or misdiagnosed as depression, Alzheimer's, etc., so it's possible that your father's GP does not know to look out for it. A neurologist would likely be able to diagnose it with a CT scan or an MRI. I don't know how you can convince your father to submit to such a scan, but maybe you could at least try suggesting it to the GP.
posted by BlueJae at 8:42 PM on November 11, 2013

IANAD, but my radar pinged when I read your question and I wanted to add my two cents.

My Dad (who was in his 60s) got ill and in the throes of his illness, began to exhibit the same behavior as your father. Because he was so physically ill (and also we were in Australia) we managed to get him admitted to a psychiatric hospital and he was diagnosed with schizophrenia. We asked about dementia, but the big difference is that he seemed perfectly rational to the outside -- he knew where he was, he wasn't disorientated, he wasn't mentally deteriorating-- he could answer any personal questions about himself and his family, and he didn't have memory problems. He was not 'confused' -- which actually made it really hard to both get him admitted and get a diagnosis. Because someone who didn't know him well couldn't tell there was something necessarily 'wrong' with him. They saw a kind of odd, ranty, man. But we obviously could; it was a complete 180 compared to who he used to be, to us.

In the same way, he himself had absolutely idea something was 'wrong' and was in full denial about his behavior being altered. He was convinced he was fine, and/or in his right mind. If questioned, he'd be able to talk his way out of it, without realizing his lapses; he never had a moment of not appearing lucid and rational-- even though he obviously wasn't himself. This is another symptom. I'd say to talk to a mental health professional about his symptoms. It's more than an end-of-life crisis. Something is seriously wrong here.

Like your Dad, he'd answer in non-sequiturs, he'd rant about made-up things, he was convinced my mother was out to get him, he'd hide things around the house because he said she'd take them from him, and so on and so forth. He began to exhibit extreme black and white thinking, and a sudden interest in the metaphysical.

Thing is this-- in our case, once we managed to get him admitted, he was put on meds that balanced his moodswings. He was put back into the regular hospital after that; much closer to the person we knew and loved. He wasn't back to his old self, but he was much closer. It was amazing what they did, and we're super grateful to the psychiatric nurse who took care of him in that time. If he didn't take the drugs (and sometimes he'd intentionally avoid them), he'd go back to the way he was. When he took them though, he had realizations that he had been acting 'crazy'.

If it is schizophrenia or something similar-- as your follow-up says, it's really really hard for you to get care for him without proving a bunch of legal things, such as him being a danger to himself or others and such. It was really really hard for us, in the end, it was partly out of kicking up a fuss and pity that we managed to get him admitted. But I will say that doing so helped us tremendously, gave us some semblance of peace (especially my poor mother) and made it infinitely easier to cope with everything, especially once they figured out what meds would help.

If he's otherwise healthy who knows how many years this will be a thing? Or how much worse he'll get? So it's perfectly acceptable to want to put it in the too-hard basket, and just distance yourself, and I wouldn't blame you if you did. On the other hand, this isn't his fault-- it's not him. I know it's hard to remember that when he's right there and being odd and vitriolic, yet lucid somehow-- but he's not the person you knew and he needs help. I'm not saying it's schizophrenia, but it may not be dementia either. As it is, it's something and you're right to be worried.

But you probably can't do anything much right now anyway. But keep track of him and his behaviors, if they get worse, threatening, or increase, or he deteriorates cognitively in any way, try and do your best to help him. Write them down, be specific! -- And obtain proof if you have to, and see if you can legally get him the help he needs if he gets worse. I would look into any kind of legal recourse I could to help solve this.

I'm so sorry you're going through this. You don't have a lot of options, but, good luck.
posted by Dimes at 1:10 AM on November 12, 2013

Given you say you have your own professional experience with persons with dementia, I may not be able to add much to that.

But early-onset Alzheimer's, and another type, frontotemporal dementia, are recognized as more common variants at your father's age. My father had FTD, and has recently died, so I went through all you are going through a few years back -- an adult, seemingly independent and capable, physically healthy, but not acting rationally. It would have been difficult for us to get a guardianship due to his ability to present himself; in fact, we had scheduled a neuropsychological workup for him and he just called the doctor's office and canceled it on us ("I don't need it" -- but one of the features of FTD is an inability to have insight into one's own condition).

FTD, FTLD, and Pick's disease are heavily overlapping terms for the same thing. Research into physical causes may yet distinguish them better, but for now, it seems to be a preference of the clinician and his or her training. The Association for Frontotemporal Degeneration was a great resource for us, and may have been where we first saw a list of symptoms that just clicked for us. To this day we wonder how many years he was in the early stages, as there are a few inexplicable and uncharacteristic anecdotes from that period.

Anyway, as we were considering our options, he had a rather swift series of legal and medical incidents which allowed us to put him into a nursing home for a couple of years.

I think you and your mom need to sit down and determine what your preferred outcomes are here. She may want to be all in, or she may want to be all out, and having been through it, I would consider both extremes (there isn't much of a middle).
posted by dhartung at 1:52 AM on November 12, 2013

Response by poster: Thank you for the suggestions and support, particularly from those who've been through something similar themselves.

Yes, the most frustrating thing is that "get him the medical help and support he obviously needs" is in a way obviously the best answer to what I should do! But it is just not a possibility. He will not, absolutely will not, agree to any kind of medical help at all, and there is no amount of reasoning/cajoling/deception that will get him there (believe me, I/we have tried). And, we can't physically drag him there. He is not presently anywhere near impaired enough to be sectioned, and being sectioned would be the only way to get him treated without his consent.

So we're stuck in this limbo, until he decides himself to seek help or gets worse enough that the decision can be taken away from him. In the meantime, my dilemma isn't "do I stick around and try to help him or do I walk away?" - it's more "given that I can't help him right now, do I stick around on the only terms he'll accept (pretending nothing is wrong, agreeing with him about all the external things that he thinks are making him unhappy, not confronting him about his treatment of my mother), or do I tell him I'm refusing to participate in that?"

It might sound like I'm not appreciating how serious this is or what the possible diagnoses are. I do care, very very deeply. This is like living through a nightmare and I would do anything to help him get better if it was in my power to do it. But at the moment the only thing that seems to be in my power to do is to decide how I interact with him.
posted by smockpuppet at 4:44 AM on November 12, 2013 [1 favorite]

I think my response to this would depend greatly on your previous relationship with your dad. If he had previously been abusive or neglectful, I would say you have no obligation to continue to help -- I don't think genetic material obligates people to care for those who didn't hold up their end of the parent-child relationship. If it's always been a toxic relationship and things have simply gotten worse, I think it's fine to wash your hands of the situation.

However, it doesn't sound like that is what is going on here. If your dad has always been there for you, I think you do owe it to him to stick with him when the going gets tough. Whether this is early-stage dementia, Alzheimers, a mini stroke, clinical depression, etc., I don't think someone's personality would change that drastically without some medical/mental health cause -- again, if this is just a matter of degree and things have always been pretty shitty between you two, see the first paragraph. But if that's not the case, then just as you would stick by a parent through difficult cancer treatments, I think you owe it to your dad to do the same here. However, I don't think that means just agreeing with his abuse or acting like it's not happening.

I would prioritize:
1. Speaking with a lawyer and doing what you can to make sure your mother is protected.
2. Gently but firmly responding to his off-base/verbally abusive comments. "Dad, that's not an appropriate way to speak to me. If you don't want to have a civil conversation, we can try again tomorrow." I think you can and should confront him about the treatment of your mother (not as a big "let's sit down and talk" but rather responding in the moment as you see inappropriate behavior).
3. Keep trying - remove yourself from the situation on a day-to-day basis as you need to for your own mental health, and do as much as you can to give your mom 'breaks' from the situation. But don't go away and never come back.
4. Keep monitoring the situation so that you can respond quickly (and know what your options are) the minute he becomes a danger in an actionable way.
5. Find support for yourself, be it through a counselor, group of people going through similar issues with parents, friends, church group, etc. This is not easy, and you can't do it alone.
posted by rainbowbrite at 10:21 AM on November 12, 2013

« Older Where to live and advice in living in Charleston...   |   Complications of a rebreak of a boxer's fracture... Newer »
This thread is closed to new comments.