Early Onset Dementia

[Haven]

Does anyone have experience with this? Anyone with a family member or close friend with any type of dementia?

I think my 56-year-old father might have it. But he could also just be a pathological liar, or have some other disease or illness. His father has dementia, but he was always a liar too, so I can't tell which were the symptoms of the disease and which were other issues.

My father's behavior has always been bizarre, when I say he could be a pathological liar I am not exaggerating. He lies constantly, about things large and small. But he's also forgetting things lately, and his entire personality is just becoming more extreme. He made up the most elaborate, bizarre story to cover up for something he failed to do just this week, and this really is the final straw, so to speak. He just cannot be healthy. He can't.

Anyway, I know a lot of you have cared for family members. I hope nobody has any experience with dementia, as I know how horrible it is because of my grandfather. But if you have, I'd love some insight.

If you do have close experience with this, how did you first get your loved one to seek out medical help? I've been worried about my father for a while, but he gets extremely agitated when I voice any concerns. What were the earliest symptoms?

 

[Kaleigh]

Do you have siblings? I should know that by now. Look, this is a hard thing. So buckle up for a long ride.. Many cases the person is in denial and will fight you tooth and nail.

My mom had it. Has it.

I am built more like my Nanny who had a great mind and memory which my husband says is a curse because I remember everything...


I have a friend who is dealing with this, and her dad is a doctor and is very angry that anyone wants to interfere...


So it's a case of walking on egg shells, I have to say...

Big hugs.

 

[Enerchi]

I'm very thankful I do NOT have any personal experience in my family but I do have work experience. Families are the first to notice (usually) and the ones most emotional and reactive to it. The affected person is ALWAYS angry and in denial. Simple things get brushed off (forgotten words, where are the keys, why am I in this room, etc. ) as just "oh that's how *BUDDY* is now - we just laugh it off" ... but it isn't really a laughing matter. If you can get him to his MD and give a first hand account of what you are noticing, that would be beneficial. There are safety concerns in the home to be looked at. Ability to drive a car. Manage a bank account - initiate a power of attorney for both financial and health (not sure if that is just an Ontario/Canada thing or if in the US as well). Resistance by the family members will be all over the place - as well as everyone's reaction to a diagnosis. Anger, acceptance, denial... its like the grieving process.

Talk with your own MD if possible or a local dementia/alzheimers society. As much info as you can arm yourself with, is a good thing.

Good luck, Haven, this will be a very challenging stage - I hope it goes as smoothly as possible for you and your family.

 

[Skippy123]

let me just throw this out there because I don't know his medical history but could he have a tumor? Tumors do strange things to people and lots of times they forget. I have had a family member with a frontal lobe tumor and a good friends mom had 2 tumors. I am sorry Haven; I hope you get some answers.

 

[Haven]

Thank you Kaleigh, Enerchi, and Skippy.

Kaleigh--That's what I feared anyone with experience would say. It's already been a bumpy ride, to be honest. He's been acting all sorts of crazy for some years now. I'm so sorry to hear about your mom. Sometimes I think having a great memory is a curse, you're very right. Hugs to you, too.

I have three sisters. I'm the only one who is both local and a "full adult" at the moment--the other three are all in grad school or recent grads looking for jobs, and my next oldest sister is living in LA. (Our family is based in Chicago.) I'm the oldest, and the one who does all the dirty work with our parents, so to speak.

Enerchi--Thank you for chiming in with your professional experience. I knew we'd have at least one poster with professional experience in this area! He is definitely quick to anger. As I said he's always been a liar, but in recent hears he's become extremely quick to anger if we even question something he says that doesn't make any sense. He was much smoother in the past, if that makes sense.

I have a colleague who teaches a class on caring for loved ones with dementia, and she was kind enough to give me her time for a lunch one day at the end of last semester. I learned a lot, now the difficult part for me is this moment I'm in right now that kind of feels like the tipping point before we go over the edge, so to speak--how to broach the subject with my father, how to articulate to him and professionals the things that are concerning me, how to identify things that could be symptoms. Like you, my colleague told me that family members are usually the first to identify the symptoms, and she also said that when people think something is *off*, it usually is.

I just do not know how to approach him about seeing a professional. He gets so irrational and upset whenever I bring anything up, which I have a couple times in the past.

I do worry about his living conditions. He lives alone an hour away from me. I've never seen his place (he moved there four years ago after my parents divorced.) He has hoarding tendencies, and I fear he's living in a filthy or dangerous environment. He is a financial nightmare, I have no idea how he earns his living now or pays for his bills. He is literally incapable of managing a normal life, which is another reason I fear he has dementia.

Skippy--My dad's younger brother died of a brain tumor at age 42. It was terrible, the size of a small melon when it was discovered. About five years ago I was terrified that my father had one too, he was mixing up words the way his brother did, among other things, but he absolutely refused to see a doctor about it. I know the tumor my uncle had isn't hereditary, but it's something I think about a lot.

Thank you so much for chiming in, everyone. I'm feeling very stuck at the moment, or maybe I should say I'm feeling immobilized, I don't know what to do next.

Interestingly enough, he called while I was typing this response. He does this thing where he gets hyper-vigilant about repeating lies he's told us once he thinks we might know he was lying. I think he believes that if he keeps on saying something it will become fact.

His most recent story was this bizarre, complicated tale of why the A/C repairman didn't fix the A/C in my mother's house. (My mother is in Europe, her A/C died the day before she left. She asked my father to take care of it, goodness knows why, and then only told me about it two days ago.) He told me this very long story about how the A/C guy was at the house yesterday but left unannounced, and only told my father it was for a family emergency after my father called him repeatedly. Then, A/C guy was supposed to go back to the house at 8:30 last night, so my father waited there for over an hour and he never showed. My father said he has since called him every two hours and the guy is not returning his calls. (Mind you, my father's version had all these details--he named all the tools he watched the guy lay out on a canvas on the ground, restated a conversation they had before the guy left the house, etc.)

My mom comes home tomorrow so I want this fixed for her so I called the guy myself. It turns out the real story is that my father refused to go to my mom's house to let the A/C guy inside when he was there, even though my father is the one who set the appt time, so the A/C guy showed up on Tuesday and couldn't do the job. He called my father repeatedly since and my father never responded.

Why my father made up the elaborate story with all the details about the family emergency and watching him lay out his tools on the ground is beyond me. Why he didn't just say, "I made the appt, forgot about it, and so the guy showed up but couldn't finish the job. We have to reschedule it," is also beyond me. But the whole dog and pony show--the family emergency! The details about each tool! The retelling of the conversation that never happened! That is what freaks me out and makes me believe this man is terribly, terribly ill.

AND, whenever he lies like this he's always found out. He had to know that someone would end up talking to this A/C guy and the truth would come out. But even when it happens, he denies it and becomes so upset that there is no talking to him.

ANYWAY, sorry. That was too long. I am just beside myself with frustration and also fear for my father. I have a lot of issues with him, but I think he's sick and it makes me feel very bad for him, too.

 

[Maria D]

Oh Haven, I'm so sorry you are going through this -- it does not sound good. I don't have any experience with this at all but I just wonder, if this is a case of dementia, if your father is lying to cover up anxiety about dealing with strangers. Could he have avoided meeting the a/c guy on purpose because the anxiety level would have been worse than getting caught in the lie?

Does he have a regular doctor that he sees? If he does, I would make an appointment to speak with his doctor and tell him your concerns, even if your father won't go with you.

 

[Haven]

Thank you, Maria.

That is a really interesting point, and you might be on to something there. He is extremely socially awkward, though we've always believed he doesn't realize it but maybe he does.

He's always been "bad at life" as some would say--He can't really get his act together, can't complete what seem like very simple tasks to most people. I have always been so perplexed at why it was so hard for him to just deliver on what he promises to do. But since I've had dementia on my radar as a possibility, it all makes a bit more sense.

It's hard because I have a lot of resentment towards him about the lies he's told me and how they've directly affected my life. But then I think, how can I harbor ill-feelings towards a sick person? He's taken out loans and credit cards in my name (forged the applications and my signature, of course,) for example. I'm still a bit prickly over that.

 

[stepcutnut]

Oh Haven! I am so sorry you are dealing with this!!! We are in the midst of a battle with dementia with my grandma and it is truly horrible! If you are concerned with his living conditions and he is over 60-I believe in IL, why not call adult protective services to go on a house call? It would at least give you piece of mind to know he is living safely and maybe they would be able to help with any future needs that arise. Good luck!

 

[Enerchi]

He has hoarding tendencies, and I fear he's living in a filthy or dangerous environment. He is a financial nightmare,

Haven, *THIS* is what I deal with every day! The bulk of our case load is 55+ single people living in hoarded conditions with amental health component. Most are very vulnerable and at risk of housing loss. It is a definite challenge --- but also extremely rewarding when things go well!

Priority 1 is safety - fire, falls and financial. I think you are USA, right? Not sure how all fire departments work, but you could call the county division and report your concerns for his home environment. The ideal here is to have a pathway (preferably 3') access/egress from front door to a secondary exit (balcony/back door); no combustibles around a heat source (baseboard heaters/furnace/stove); working smoke detectors on all floors, especially outside a bedroom; and no blocked exits. Falls - removing anything from a walkable pathway - nothing on stairs, removing cords across carpets for example, safe handles for stairs and in baths -are just a starting point. Financial - make sure you are on his bank accounts - not that you need to be managing but if he is making repeated small (or large!) withdrawals, you will be notified. Power of Attorney is key - hard to approach the topic but worth the struggle to ensure there is a substitute decision maker or responsible adult to look after his affairs when/if he is no longer available.

Infestations are also common - bed bugs, cockroaches, mice, spiders, flies... on and on. The local public health department (inspectors and nurses) can be helpful assets for you to be in touch with.

Hoarding - there is a myriad of reasons as to why people hoard. The upcoming DSM IV will list hoarding as a separate entity, not as a subsection of OCD. One of the things I notice regularly, is that people with hoarding tendancies, can not organize themselves. They can't sort things the same way we sort things. A blue envelope is different than a red one, than one that has a water bill vs one that has a tax bill vs one with the phone bill (as an example). They need to see EVERYTHING to know what they have and how unique each piece is. Often all kitchen cupboard doors are removed, and all items are on the counter, just so they can see what they own. A "clean out" is tantamount to torture at the hands of terrorists, to them. It requires *extreme* patience to reduce the volume of a hoarded unit.

Happy to go on and on and on... but the key things are his health and his safety. Family members are usually called on to do the most work, but often, are totally ineffective because of the emotional involvement and years of history. We find community resources such as community health clinics and the health department, are the most effective in helping change to happen.

Hope that helps a little bit!

 

[JewelFreak]

This is a real tough one, Haven & you have all my thoughts & wishes for wisdom & plain good luck. It gets exhausting, which makes asking various orgs for help a bigger burden -- but that seems to me the best place to start. There's sure to be an alzheimer's society in Chicago, possibly where you live too; they are there to assist. Ask them how to proceed with your father -- how to get him to a dr. & all the document stuff mentioned above. They should be able to give you advice on that -- it's what they deal with constantly. You might make an apt. to talk to a geriatrician yourself, someone who could guide you. At the least, there's an Office on Aging, contact either online or in the phone book.

Make sure your sisters are aware of what's going on too -- they need to be on board, even if they're young & live distant. Sometimes we are forced to grow up faster than we wish, and you never know how or when they might be able to help.

If this turns out to be dementia, please don't try to handle it all yourself -- lean on anybody who offers. Looking for an alzheimer's support group might make things easier.

It is a long haul -- I haven't dealt with it close-up but have friends & relatives who have. Come here & vent or boohoo or just sigh or ask questions, because we all care about you. Mucho hugs, wish I could do that in person!

--- Laurie

 

[rainwood]

Sorry to hear about your dad, Haven. My mother has Alzheimer's (but not early-onset) and one of the things I know is that dementia can manifest itself different ways in different people. My mother doesn't lie so much as make things up to fill in the gaps of her memory. That' doesn't sound like what your father is doing.

The one thing that was guaranteed to make my mother upset was to suggest or say she has Alzheimer's. We're pretty sure her mother had it (though never diagnosed) and I'm sure my mother was scared she would get it too. But it did make it tricky to get help. We were able to get her into a neurologist and have him give her the memory tests, and she was aware of being forgetful. I think I blamed it on the statins she was taking. I'm not sure my mother understood exactly what was going on, but she figured out enough to be very unhappy about it. And since that day we've never used the Alzheimer's word in front of her. That could also be a challenge with your father, whatever the medical issues turn out to be, and the challenge of getting him help.

 

[diamondseeker2006]

Well, I'll jump out on a limb and suggest that this could be mental illness and not primarily dementia. The years of strange behavior and lying seem to go back a long time, so I am not sure you can blame all the current issues on dementia. You mentioned him mixing up words a few years ago...any chance of drug/alcohol abuse or something like that? Did that stop?

And I'd have a talk with my mom about having contact with him. The help with the AC didn't work out very well.

My Dad had dementia for years before he was diagnosed with Alzheimers and he just wasn't like your father at all. I am not sure he could have created such elaborate lies.

 

[Haven]

Thank you all so much for sharing your experiences, thoughts, and ideas. Just the act of writing about this has given me some clarity on this situation, so I really, really appreciate it.

DSeeker--I'm sorry to hear that your father had Alzheimers.

I have no idea what my father has, so you could be absolutely right. The only reason I keep thinking he has dementia is that his behavior is so much like his father's, but then again I don't know if his father just had a mental illness that went undiagnosed and now that he has dementia we just blame everything on that. The lying does go back a long time. It's gotten much, much worse lately, but that could be for any number of reasons. And his lies are extremely elaborate--you make a good point, could a person with dementia keep track of all those details? I have no idea.

My father never drinks or does drugs, and never has. He's been an ethical vegetarian since he was 17, so he's always been kind of obsessed about what he puts into his body.

The thing with my mom involving my dad for help is an entirely different story. She's very bitter that she got stuck with the house after the divorce, so she likes to ask him to do things to help her out. Of course, they never come through and DH or I usually end up rushing over there to take care of whatever it is my father didn't do. I think old habits die hard, she's been asking him to do things she knew he wouldn't do for over 30 years.

Rainwood--I'm sorry your mom has Alzheimers. You make a really good point about not using the "A" word. I think my dad shares your mother's fear of having dementia or Alzheimers, and I think he's scared about tumors too because of his brother.

JewelFreak--You are so sweet, thank you.

I love the idea of speaking with a geriatrician. I'll make an appt soon. Same goes for the local orgs. They may be able to help me figure out where to start with getting my father in to see a doctor, too.

I've been talking to my sisters for a while about my concerns, but they all seem to think our dad's just a giant *******. I'm the only one who makes an effort to spend time with him regularly, though, so I think they don't see nearly as much as I do.

Enerchi--Do you go into people's homes and help them? I can't even imagine going into those environments. I can barely watch the shows about hoarders. I bet you help a lot of people live better lives.

I have no idea what my father's house looks like, but I do know that he had hoarding tendencies before my parents divorced. He often says, "You'll have to come out and see my place," but when I bring it up he always finds an excuse to avoid the visit. He told my husband about some improvements he was making in the house, and DH offered to help him. They went as far as to set up a time, but then my dad canceled at the last minute. It could be that DH and I are kind of neat freaks, so he's embarrassed if the house is messy or unclean, but maybe it's because he's hoarding stuff out there.

Stepcut--Thank you! I'm so sorry to hear about your grandmother. My dad is only 56, but I'll call and see if there's anything that can be done. Maybe I'll just show up one day and be all, "Surprise! I brought lunch."

 

[iLander]

Haven, it's a shame you're going through all this!

I didn't read all the posts, but he's a sociopath, you knew that, right? It's not that rare, about 1 in 25 people have it to different degrees.

We had an employee that was a sociopath, and they spin elaborate tales. I finally figured it out when our employee started telling me a story about his "grandmother's childhood" that was straight out of a Little House On The Prairie book that I had read. One time, a sheriff came to the door looking for the employee, who always wrote bad checks, and the employee said to the sheriff "No, (his own name) isn't here today, I think he had to renew his driver's license". We finally had to let him go after his lack of schedule keeping and lack of organization directly affected our business. Interestingly, since then, he's found God, gotten married and has 5 kids.

If your Dad is a sociopath, he problems could be worse because of chemical/nutritional imbalances. I don't know how, but if you can get him on high dose B vitamins (they help with the central nervous system) and a good daily multi, I think you'd be surprised how much better he is. Not cured, but less erratic. If he smokes, smoking robs the body of B's, which makes it worse.

As for the dementia, I don't think that's it. Has he forgotten how to do things that he used to know? Common, everyday things, not playing an instrument or anything like that. Like he always brushed his teeth, but now he doesn't know how. Does he make up weird words for words that he used to know? Like "wee-woo" instead of ambulance. Does he blank on simple words like "hair" or "lips"? Mixing up the kid's names when he's mad doesn't count. I do that!

It sounds like his sociopathic issues are getting worse. I would check his diet and environment.

 

[Cluless]

Haven, I'm truly sorry you're facing "this" whatever it may be. What may seem as lies to you can be reality to him. You see my father in law was diagnosed with (probable) Lewy body dementia 3 years ago. Things started seeming a little off no one made any thing of it, was just him, his usual strange stubborn behaviour. Then one day he came home and recounted about how he went out to a certain place and got lost and how he was in a totally different part of town, but then he was somehow back to where he started and asked a nice police officer to bring him home but to leave him at the corner not in front of the house because he didn't want the neighbors to see that the police took him home and ask questions. He even said that the police officer knew my children and went to school with them. He said that the officer told him my daughter was a pretty blonde girl, and he also told us the officer's name.Well you see this wasn't a Lie, it was all true to him, to him it really happened...............

We don't know what did happen but we do know that some of the facts were just impossible. My daughter was a blonde at some point in her life, not when she attended that school, we're certain of that. The name he gave for the police officer no one knows him. Did he have a reason to recount such an elaborate story,no, he wasn't late, he didn't forget to pick up something ...... this just really happened in his mind.

Again I'm sorry this is happening I don't want to scare you. Please tell him you care about him and maybe just tell him that he's been looking a little tired lately that you are concerned and you would like for him to see a doctor and you would be willing to go with him. See how he responds to that.

If you have any questions at all please feel free to ask away,know you are not alone xo.

 

[iLander]

Oh, another symptom of Alzeimermers (sp?) or dementia, is a loss of inhibitions. An elderly, previously sweet, lady will suddenly start spewing curse words, or insulting people. An elderly, previously conservative, gentleman will suddenly start leering at women and talking about "boobs". Or a happy person will become a crier. That doesn't sound like your dad either.

 

[packrat]

I'm sorry Haven.

I'm not entirely sure what the differences are between dementia and Alzheimer's. My great gramma and great aunt I believe had Alzheimer's..but I was so young, I don't recall which it was exactly. All I remember is great gramma got confused, looked lost at times, kind of wandered around gramma's house when we were there. My great aunt got mean. She found me in her room (gramma's guest room) looking at her jewelry (started young, you know) and freaked out screaming at me that I was a thief and stealing her things-I was like, 8 at the time, and used to call the police and report that robbers kept breaking in and stealing her things..but then calling back to say that the robbers had broken back in and brought it back.They're both gone now, and my gramma is 93. I took care of her for about a year, last year, and she was starting to have some confusion "Missi's coming to do my lunch today, she takes care of me you know, do you know what time she's coming?" she'd say while I would be getting her lunch ready. That kind of thing. I caught her doing some straaaaaange things, but never lying, just incredible confusion.

JD's mom has dementia. But..she also has mental issues to go along w/it, and I think that compounds it greatly. And she was a heavy drinker. Not quite a hoarder to the extreme as on the show, but bad enough. Antisocial, suspicious, antagonistic, controlling, and a liar..and boy could she cook up some doozies, to the point of being vile and evil. The mental issues stem back from young adulthood/childhood, and were extreme in that..I don't know how to explain it. It's like she would purposely do bad things to herself or allow bad things to happen to herself, to get a reaction out of JD, so that his response to it was a direct correlation to how much he loved her (in her mind). If he rushed to help her, busting down the door, that meant he loved her a lot. If he didn't, she would just try harder to get the reaction she wanted. It took a long time to understand and "see" what I saw from day one, b/c he'd been dealing w/it his whole life. She's in a nursing home now--trying to get a reaction and forced "love" from her son, along w/everything else, took a hard toll on her.

One thing we learned from the last few years w/his mom, is that we couldn't force her to do anything. It was helpful that she lived here in town and doctored where I worked, so I could let Dr know what we'd been seeing, and she would know to look for various things when his mom came to be seen. We also were in contact w/the Aging Services center, and that part of it was frustrating at times b/c we were told pretty much if she didn't want help, there was nothing stopping her from running up thousands in credit card debt (which she had already done) and living how she wanted. Dr. did say if things got bad enough she would have her committed to the psychiatric hospital for evaluation.

Dangit that turned into a novel. If you know who your dad doctors with, you could set up a time to have a consult w/the doctor to voice your concerns. Also look for Aging Services in your area and see what kind of resources they offer. And, the Department of Human Services would be another place to call and see what you can find out. I know they do welfare checks on people who have problems or have been reported to them as having problems.

 

[Haven]

iLander--You're right, those symptoms don't sound like my father at all. The few things he's done that could be attributed to dementia are that he sometimes can't think of a simple word for something, and he forgets that he's told me a story or that we've made certain plans to get together, or do something in particular. The searching for words scares me because that was his brother's first symptom (other than terrible, persistent headaches) before they discovered his brain tumor.

The worst was when, over the course of about a week, he repeatedly said at the end of phone calls, "You know, we really should make plans to get together. I don't see you enough," even though a) After our first phone call that week we made plans to get together the following Monday, and b) I was going to see him that Sunday at my sister's bridal shower. THEN, at the bridal shower he was leaving and said, "You know, we need to make plans to get together soon. I don't see you enough." At that point I walked him to his car, sat in the passenger seat, and told him that I was really worried about him because he REPEATEDLY forgot that we made those plans, and said the same thing to me about getting together. He got all flustered and said, "No, I know we have plans for tomorrow. I just meant in general." He clearly didn't really remember, but then I told him I was worried about him and he got extremely angry and so I just left.

He doesn't do these things as much as he lies, though. He always forgets when he is supposed to do something for someone, and then he lies about it, but I don't know if the forgetting is because he's so wrapped up in himself, or if he's really incapable of remembering.

I don't know what he is, but I'll look up sociopath and see what that's all about.

Cluless--Thank you.
It sounds like your FIL is really struggling, I'm so sorry to hear this.
I will definitely let you know if I have any questions. This thread has given me a lot to think about.

 

[MissGotRocks]

I've not had direct family experience with Alzheimer's but have known people outside of my family with it. It's been said that forgetting your keys, not calling up a name - that sort of thing is part of the aging process. I think the Alzheimer's is more a case like another poster said - forgetting what street to turn on to get home, putting sugar in your coffee three and four times, that sort of thing.

I'm leaning more toward mental illness - I don't think people with even early onset dementia have the ability to weave elaborate lies. They would not be able to recall that many details and tell it over and over again. I'm sure he needs a complete psychiatric workup but I do know that's easier said than done. Unfortunately, sometimes their behaviors make it necessary to be hospitalized or whatever and only then can they get treatment.

I'm sorry for your angst and I certainly understand and appreciate your concern. I think for most of us who have dealt with illness in parents - whether physical or mental - we come to realize that it is a 'one day at a time' process. Sometimes there has to be a partial failure on their part to finally get to the place where they can receive some help. In the meantime, you just do the best you can. Outside of offering to get them medical help, there is really not a whole lot you can do. It's frustrating and agonizing but just stay in touch with him and offer to make appointments for him. Since he has been rather health conscience, would it be out of the realm of possibility for him to see a doctor for a blood pressure check or blood work? Would he agree to do that much? It would be a start and maybe if he felt he didn't have to go alone he would be more agreeable.

Hang in there and know that you are doing your best. You have to take care of yourself and the baby as well!

 

[Kaleigh]

Haven,
My heart aches for you. And you have to take care of YOU...

Is it possible to talk to his physician?? I know when I was the primary care giver to my grandparents, I had cart blanche with the docs...

Hepa laws may prevent this now. IDK.

But if you know the doc, you just plead your case and say what am I to do??

Tell them you are his one and only advocate.... That you need help.

Having read all your posts over the years this one is bringing me to my knees of sadness. But knowing you, and how bright your are, you will find a way to get some help.

And if you can't?? Remember you can lead a horse to water but can't make him drink.

At the end of the day, you did your due diligence.

Hugs x a thousand... We are here for you.

 

[Haven]

Packie--Oy, it sounds like your MIL has a lot going on. I'm so sorry. I can't even imagine dealing with such a severe situation.

The way you describe your great grandma and great aunt sound like what I typically think of when I think of Alzheimer's and dementia. My grandfather (though I don't see him much) is like an angry version of dementia. He's always lied, but now he lies and screams and threatens. But you know, I wouldn't be surprised if he has additional issues in the same way your MIL does, so maybe his behavior isn't representative of dementia, but something else.

MissGotRocks--Thank you. You make so many great points. I'm wondering if it really is mental illness and not dementia. His elaborate lying does sound outside the realm of what someone with dementia might be capable of weaving.
My father does have high blood pressure, so I know he goes in for regular screenings because he's been working on managing it without medication. Maybe I can get an edge in that way, tell him that I'm concerned about other things.

That's a very good reminder, to take it one day at a time. I remember feeling like I would never be able to do what had to be done when my grandmother was ill, but my uncle and I kind of just banded together and we managed to do it--one day at a time!

It's a difficult balance because I want to help my father if he is sick, but I have to protect myself and my growing family, too. He is very hurtful, and I constantly go back and forth thinking about whether I want him in my life. It always comes down to this belief (instinct?) I have that he cannot help himself. He really believes his lies. He really believes that whole situation happened with the A/C guy. It's hard for me to turn my back on him when I believe he's not doing these things on purpose. But maybe he's just that good, and I'm a sucker. Who knows?!

Thank you all so much for your counsel and support.

 

[Haven]

Kaleigh--I'm not going to pretend I'm not sitting here crying right now. Thank you so much.
Thank you so much for your support, everyone. I've been agonizing over this for so long, it's so nice to be able to talk it out and get advice from you. Thank you.

 

[MissGotRocks]

Packie--Oy, it sounds like your MIL has a lot going on. I'm so sorry. I can't even imagine dealing with such a severe situation.

The way you describe your great grandma and great aunt sound like what I typically think of when I think of Alzheimer's and dementia. My grandfather (though I don't see him much) is like an angry version of dementia. He's always lied, but now he lies and screams and threatens. But you know, I wouldn't be surprised if he has additional issues in the same way your MIL does, so maybe his behavior isn't representative of dementia, but something else.

MissGotRocks--Thank you. You make so many great points. I'm wondering if it really is mental illness and not dementia. His elaborate lying does sound outside the realm of what someone with dementia might be capable of weaving.
My father does have high blood pressure, so I know he goes in for regular screenings because he's been working on managing it without medication. Maybe I can get an edge in that way, tell him that I'm concerned about other things.

That's a very good reminder, to take it one day at a time. I remember feeling like I would never be able to do what had to be done when my grandmother was ill, but my uncle and I kind of just banded together and we managed to do it--one day at a time!

It's a difficult balance because I want to help my father if he is sick, but I have to protect myself and my growing family, too. He is very hurtful, and I constantly go back and forth thinking about whether I want him in my life. It always comes down to this belief (instinct?) I have that he cannot help himself. He really believes his lies. He really believes that whole situation happened with the A/C guy. It's hard for me to turn my back on him when I believe he's not doing these things on purpose. But maybe he's just that good, and I'm a sucker. Who knows?!
Thank you all so much for your counsel and support.

I think this is part of your answer. You have that deep down in your gut feeling that he can't help it. I think it's difficult to separate emotions and reality when you are dealing with someone that has true mental illness. Part of the time you think they are being devious or hurtful when in truth you know they are truly ill. It's also difficult to know exactly what your responsibility is or should be - and unfortunately, there is no good answer to that question. Just breathe deeply and know that if a situation presents itself where you can be helpful, you will be. If at any point you can reasonably jump in to take action, you will. He is still a grown, adult man and unlike a child, you can't take them by the hand and MAKE them get the help they need. You are aware of the situation and that probably puts you yards ahead of some other people in the same circumstance. The only other suggestion I would have would be to contact the Department of Aging in your area and ask for advice or help. They might surprise you with resources you didn't know to be available.

Big hugs to you!

 

[Kaleigh]

Sweetie please listen. Get your siblings to take this on for now. Your plate is full growing a very very important little one.

I have been in your place, and I can tell you. It's a very rough road, and you need support. Your siblings will have to help. I didn't have any siblings and took it all on my back. I had a father that was the same.


Get support, even if it's not family. Friends, church, etc.....

And of course we will be here for you.

Are you on FB?

 

[iheartscience]

What a terrible situation, Haven, for you and for your father. I agree with some of the other posters that this sounds like a mental illness instead of dementia. The hoarding and social anxiety point to a possible anxiety disorder and/or depression. I'm not sure where the lying comes in, but that could be part of covering up the anxiety.

Someone I know's father was recently diagnosed with bipolar disorder in his fifties, and is now on medication and doing really well. I'm hopeful that you can get through to your father in some way and he can at least be evaluated.

 

[marymm]

My dad had early onset dementia in his early 50s - vascular/multi-infarct dementia which later combined with Alzheimer's - his very first symptoms were forgetting the right words and also repetition of stories and phrases in conversation; sometimes forgetting to do things (errands/chores) which used to be a matter of course for him; and occasionally he would make up some fanciful story and we would all put our heads together trying to figure out what Dad meant or if what he had said was true... While still fairly early on with the dementia, he was often very angry (and normally he was not an angry man) - or sometimes he would go on and on on some tirade, usually based on some current event that he had confusingly twisted up with something else. His behavior really did change markedly, and he was aware of his diminishing mental abilities - he was upset about it and fighting against it happening but of course nothing really can be done. We did get him on some prescriptions to handle the anger and depression, and that helped him return a bit more to the man we knew, but it was all downhill from there.

The forgetfulness became general, and he became unable to do his own banking (would go into the bank and not know how to complete a withdrawal form), could no longer read, could no longer write (he would sometimes hold a pencil poised above a sheet of paper, knowing he used to know how to write but unable to translate words in his minds into legible letters on the paper).

We made the best of the situation, and kept him at home with us as long as possible, but the last 5 months of his life he was in a Alzheimer's nursing home. He was a lovely man - he and I had always been very close with a special bond - and you know I still miss him, but going through all that as one of his primary caregivers was the very hardest thing I've ever done in my life.

Haven, I fear it will be a very, very difficult situation for you and your family with your father's history of lies and behavior - the only thing I would say is that today there are several drugs that can arrest dementia in its early stages - it won't stop it but it can slow it down - there are a couple different drugs and they don't all work for everybody, but if they could work for your dad, it would be so worth it to get him in somewhere to have a complete examination. There is no doubt it will be difficult, but it will only get worse as the dementia progresses (if it is dementia), so early diagnosis will work to everyone's advantage. And if you need to get his medical / power of attorney kinds of paperwork in order, it is paramount to have it done while he is still considered to be in his right mind (ie, able to live independently and thus presumed able to sign papers).

Good luck to you on this - it would be wonderful if it is not dementia but something treatable that he can recover from.

 

[diamondseeker2006]

Haven, I will say one more thing. Dealing with someone with mental illness is like trying to rescue a drowning person but they are pulling you down underwater with them. My guess is that you will not be able to help him unless he decides he wants help. But if ilander is right, he is not ever going to admit there is anything wrong with him. Please don't let him pull you under.

 

[decodelighted]

You might want to take a look at this recent NY Times article:

http://www.nytimes.com/2012/06/24/magazine/when-my-crazy-father-actually-lost-his-mind.html?pagewanted=all

Our mental health system is draconian ... but, there'a a bit of hope on the horizon w/Obamacare of all things. Finally mental illness will not be able to be classified as a pre-existing condition & cause for denial of insurance. More people than ever will qualify & be able to get some coverage.

I second the advice to seek out (or, probably, have your sisters seek out) community mental health resources. It's a long, long story - one I would share offline but can't really online ... but they changed the trajectory of a situation in our family that had worsened for 15 years. It's been life changing for all of us members of a very large family. Sometimes only OUTSIDE forces can make a difference. Insiders are too invested, connected, emeshed, biased.

GOOD LUCK TO YOU and your family.


ETA: Here is one place to start. http://www.nami.org/

 

[Haven]

DS--Your warning is an important one, and I will definitely keep it in the forefront of my mind. I do feel like he's pulling me under.

Marymm--Oh my goodness, it sounds like your father had a terrible struggle at the end of his life. I'm so sorry.
Thank you for the suggestions, and I will definitely look into all of the medical things and POA if it turns out that he has dementia.

Thank you, Thing2. I'm thinking maybe it's a mental illness too now after reading so many stories about dementia. Here's hoping I'll be able to get him to cooperate for an evaluation, at least.

Kaleigh--Thank you so much. You're right. I'll start rallying some troops tomorrow. I am on FB, but I'm not affiliated with any PSish pages there. I'll try to find one. You are too sweet. Thank you.

 

[Haven]

Deco--I will read that article now, thank you.
I think you're right--outside forces are necessary here, definitely. Thank you so much.

I just want to thank everyone again. For those of you who shared your own experiences with dementia and mental illness, thank you so much for doing that. I know it's hard to share so much sometimes, but I want you to know that doing so is really helping me out in what is a very difficult situation for me. Hugs to everyone.