I'm wondering and would like to hear from members who, like me, feel their dh has ftd, and they have symptoms that bear that out, but they're not dx yet. What symptoms are you seeing, that cause you to feel strongly that he/she has FTD?
I guess I should expand a bit. We just got off of a 3-week trip in our rv. DH could not have behaved worse towards me. Daily disrespect. Rages, snotty, passive-aggressive, saying to me "I could just drive this rv off the road" and "No, I won't clean the windshield. I'm going to drive it like this!" (I had asked him to clean it with the wipers, as I couldn't see out, and I didn't think he could either. He was driving, and he was raging at me on a mountain road. I finally got the driving away from him and took over). It was just an awful trip. Yet, he can be so coherent in that his intellect is still there. But, there is this aggressive side that is so so sick. He's been verbally, emotionally, and physically abusive towards me the entire marriage of almost 21 years.
He has agreed to go back to the neurologist that he saw a year ago, and at which he was dx with MCI. I think, due to his aggression having escalated and which was so apparant on this trip, that he has crossed over into FTD. I have thought that for some time. Yet, in his saner moments, I question that conclusion. Too, he wasn't managing his insulin well on this trip, and that could have been some of the cause of his off-the-wall comments and actions.
So, I am bouncing back and forth, and wondering whether the neurologist will be able to finally dx him, and whether he will dx him with FTD. He's just so mean and ornery. That is what tells me it's ftd. The intellect is there, but the other side is so nasty.
This all is why I'm asking to hear from those of you who are also wondering whether your feeling that the dh or dw has ftd is correct.
Very interesting that you posted this at this time. I just spent about two hours reading at this site; http://www.ftd-picks.org/
If you'd like to know what I started noticing with my now 51 yo DW about 3 years ago read this article from the above site; http://www.ftd-picks.org/frontotemporal-dementias/disorders/bv-ftd
An excerpt,
"Behavioral Variant FTD (bvFTD) Behavioral variant FTD (bvFTD) is frontotemporal dementia characterized by early and progressive changes in personality, emotional blunting and/or loss of empathy. It is characterized by difficulty in modulating behavior that often results in inappropriate responses or activities. Impairment of language may also occur, but is less prominent and would appear as a word-finding problem.
Onset typically occurs sometime in the 50’s, though it can occur as early as age 20 or as late as age 80. As with all FTDs, the course of bvFTD will vary from one person to another. Not every symptom will be experienced by every person, nor will these symptoms develop in a pre-ordained sequence.
Key Clinical Features The hallmark of behavioral variant FTD is a progressive deterioration in a person’s ability to control or adjust his or her behavior in different social contexts that results in the embarrassing, inappropriate social situations that can be one of the most disturbing facets of FTD. The patient typically does not recognize the changes in his or her own behaviors, nor do they exhibit awareness or concern for the effect these behaviors have on the people around them.
Behavioral symptoms
Hyperoral behaviors include overeating, dietary compulsions, in which the person restricts himself to eating only specific foods (such as a certain flavor of Lifesaver, or eating food only from one fast food restaurant), or attempts to consume inedible objects. Patients may consume excessive amounts of liquids, alcohol and cigarettes.
Stereotyped and/or repetitive behaviors can include re-reading the same book multiple times, hand rubbing and clapping, humming one tune repeatedly, or walking to the same location day after day.
Personal hygiene habits deteriorate early in the disease progression, as the person fails to perform everyday tasks of bathing, grooming, and appropriate dressing.
Hyperactive behavior is exhibited by some patients, and can include agitation, pacing, wandering, outbursts of frustration, and aggression.
Hypersexual behavior can range from a preoccupation with sexual jokes to compulsive masturbation.
Impulsive acts can include shoplifting, impulsive buying, and grabbing food off of another person’s plate.
Emotional Symptoms
Apathy or indifference toward events and the surrounding environment can be marked by reduced initiative and lack of motivation.
Lack of insight into the person’s own behavior develops early. The patient typically does not recognize the changes in his or her own behaviors, nor do they exhibit awareness or concern for the effect these behaviors have on the people around them, including loved ones.
Emotional blunting develops early in the course of the disorder, and is manifested as a loss of emotional warmth, empathy, and sympathy, and development of what appears to be indifference toward other people, including loved ones.
Mood changes can be abrupt and frequent."
No, I haven't seen all those symptoms, but many of them that certainly appear to be progressive from my perspective. But , have no dx, or any immediate hope of obtaining one. DW will tell you vehemently, and very quickly I might add, that SHE doesn't have ANY problem.
MY problem is still the same. It's not that I doubt my observations or experiences with her over these last few years, it's how the heck am I ever going to get that elusive diagnosis? ARRRRRRRRRRRRGGGGGGGGGGGGGGGG!!!!!!!!!!!!!
Thanks, Boutoutaluck. I had read that article, too. My dx sure fits it. He has the whole marriage, in fact. Yes, the dx can be elusive. I was amazed that a year ago this neurologist didn't dx ftd. But the MRI didn't show any deterioration, hence the doctor settled on MCI. His appointment with this doctor is for Sept. 17. I will take updated notes from my journals, covering his behaviors for the past year since the doctor last saw him. In fact, I will get those notes to him prior to the appointment.
Hanging on surely describes you while driving on a mountain pass with DH ranting and raging at you! UGH! i would be selling that RV pronto and not placing myself in that precarious position again. you can not trust their thinking or actions, diagnosed or not. hope you get him in asap. meds are the best coping measures during these stressful times. divvi
Yes, Divvi, that's why I'm getting him back into the neurologist. For the seroquel. I've been reading all along on this site that with FTD and the rages and acting out, that this drug is helpful. I'm also hoping for a dx. Of course, dh told me that I'm the one who needs pills. The usual. Whatever. I said, Yes, maybe I do, to live with you!
Hanging on, I feel for you. My OH has had rages and been very aggressive and even violent towards me and to my 15 yrs daughter. I have had to call the police on more than one occasion. Once, he literally tore the shirt from his body, and apart from the fact he didn't turn green, it was like witnessing a scene from the 'Incredible Hulk' first hand..
His veins pumped, and his eyes bulged, and he popped every button off his shirt as he tore it off his back whilst shouting venomous, evil and insulting filth at Kate and I. Kate and I were terrified. The number of times I almost left him over the last 2 yrs out of pure fear are countless. The number of times I locked myself and my daughter into the spare bedroom, and boarded heavy furniture against the door so that it would buy us time in case he came to attack us. It's been awful....and it still is, as now he can't do anything for himself. He is difficult to say the least.
I've only lived with him a relatively short time. Four years in total....and of that, three years he's been ill with AD. Before that we were in a relationship, but lived apart. This makes it all especially tough. I love him....but many of my friends say I'm sacrificing my life and youth for a man who isn't my husband. I love him though. So it's hard. (I am only 42 yrs)
He's been dx'd with early onset AD with Lewy bodies.... (He is 51, but has shown symptoms since he was 47-48 yrs) They can't explain the rages, and have told me that they are common in AD BUT, since he's been on seroquel, it's been so much better. No rages of the same fortitude, and hardly any sleep walking.
If you want to email me, feel free. If you click on my name, it gives info about me, including my email address. I must say, I've found the advice on this site invaluable and the people on here are so kind and have much advice to offer. You've come to the right place....
Lynne, your situation is difficult to say the least. not being married and together for such a short time prior to DX -hardly any time at all living together. how sad. at least he has the hindsight to put everything in your name and protect you financially i am hoping. it is of concern your dear daughter has to witness these outbursts and violent episodes. its hard for the young and innocent to have to be subjected to this cruelty- unless he is thoroughly controlled and not agressive to either of you verbally or physcially any longer you may find yourself having to make hard and painful decisons later. some of the other members heree have had to call 911 as well and have their spouses taken away in handcuffs in police cars to psyche hospitals for evaluations and med increases due to violence. your perseverance on seeing him thru this disease is admirable but do take care both you and daughter stay safe. i can imagine the fear of his ripping his shirt like that. dreadful and so scary. i sure hope your trip goes well and hes super medicated:) divvi
That sounds really tough, Lynne. It's so easy for me, emotionally removed, to say leave him, especially for your daughter, and also for you. But, being in my own hell, I know you have your reasons for staying. It's hard to make the break. In my case, my dh is elderly, much older than I am, and to leave now, after hanging in for so many years, doesn't make financial sense. I think with the seroquel, that for the first time in this horrendous marriage, maybe I can find some peace, and hopefully some contentment.
I mentioned in a post that Terry started that my husband had 5 MRI, Numerous EEG, Blood Test, & 2 PET Scans before the 2nd PET Scan diagnosed FTD last July. We have been trying to find out why his memory was declining for 8 almost 9 years now. He doesn't have every symptom of FTD, however, some. I honestly think he has FTD with Alzheimer's. He still gets agitated, he also tore his shirt down the middle one time. I have really only kind of feared him once, I actually, sat in the closet, when he couldn't find me, he was scared & as gentle as a lamb the rest of the day.
Divvi, I'm the wealthy one.....Not Ian.. I pay for everything. I've always owned and run my own businesses....He's been unable to work the last 2 years due to his mental health illness. On top of that, his ex wife has taken legal action against him for lost maintenance/alimony as he can't work. Even tho she knows he has AD, she is chasing him through lawyers and he's too ill to deal with all the legal paperwork, so I have to do it for him.
Two years ago, I paid off a large chunk of his mortgage as he was falling behind on the payments, but I had it all legally registered and I bought into a percentage of his house. (I also own my own house) She is now taking me to court also as she wants to overturn or in English law 'set aside' the transaction in which I purchased a % of Ian's house. She wants to do this, as she can then try and apply to the court to force the sale of his home to reclaim her alimony......BUT he needs that money for his future care....This has been going on for the last year. We have a final hearing in September. It's a two day hearing on the 28th and 29th. I will have to be cross examined in court.
An expert psychiatrist who was appointed by the court to assess Ian, has warned that Ian shouldn't be cross examined in court as he won't be able to deal with it.... Ian says he's OK with it, but he's in cloud cuckoo.....I'm actually terrified of his reaction as I believe he will rage...
So far, I've paid all his legal bills.....(I can't ell you how much on a public site as it's obscene....) just to fight his ex wife.... My Mother won't speak to me anymore...she says I should leave....but I love him.... His ex won't say what she wants, so we have had no opportunity to settle...It's a nightmare...
I'm also paying all his mortgage repayments.....and all his other expenses....For a while, I even paid his alimony payments, and I paid all his daughter's private school fees. I'm STILL paying his ex wife's private medical insurance premiums....And I'm still paying all his legal bills...!!!
Actually, when you look at it like that, it's no freaking wonder my Mother won't speak to me anymore.....
oh Lynne, i hate to the the one to say it but yes please! rethink your situation. and your daughters, she comes first as i am sure you agree, AND your own personal funds that its costing you- just my opinion but if it were me, i would step aside since no legal issues of marriage and let him declare bankruptcy and go from there? . they cant get what he doest have. dont know how it works there in europe but here once he has no funds he would apply for medicaide and the govt would pay his nursing home costs when needed. then from the outside and no financial strains on you personally you could maybe help him from afar. i hope you have thought about what you are getting yourself into emotionally and financially in the long term future. not that love doesnt factor into a relationship as its what makes most of us stay and care for them but in your situation you have gigantic obstacles -ie. ex wife, his kids, etc. its going to be a long hard journey= reread your posts as often as necessary. divvi
Lynne leave it to our divvi to put into words what I have been thinking. Ian's condition will only get worse and there is nothing you can do to stop it. His care and obligations will suck you dry, Consider the future for your daughter and yourself. As you have said-you are still a young woman and entitled to security and happiness.
Lynne-by now you realize why this site is for dementia spouses only. Where else could our conversations transpire? I am glad that you are here and obviously comfortable disussing what is going on between you and Ian. Welcome back
Oh my, first, Lynne, Divvi also said everything running through my head. I think it was on a site for well spouses where I read the stages a caregiver goes through like the stages of grief. I remember the first stage was when we are filled with energy and desire to do it all and take on this new project and change our lives completely and are just determined to tackle it all. It's almost a eurphoric feeling. OMG, I remember that so well. I miss it really as I was fueled by love and compassion and had yet to get weighed down by the reality. Perhaps at least part of you is still in that stage. I wish you and all of us could stay there, but alas, it changes.
Hanging on: Has your DH had neuropsych testing? It was those first tests where FTD was first mentioned, by the neuropsychologist, who recommended the neurologist consider FTD and then he ordered the PetScan. The neurologists still think he may have FTD but it can't be proven. But those neuropsych tests will tell which parts of the brain is most impaired and that will be a big clue.
I don't know why, but the more I read here about this subject of FTD, AD and etc. the more it all seems to be a more and more moral, legal and emotional cluster you know what. And I'm not trying to be "ugly" by saying that. My heart has been hurt on more than one occasion because of stories I've read here in the short time I've been a member. The way in which science and "modern medicine" has left so many "hangin" on these subjects is in a way surprising, however. The use of so many powerful drugs which are barely understood as to how they work and what their side effects are. Just the uncertainty of DXs themselves, and the like, is mind boggleing. I hope DW ends up being diagnosed with a hormonal imbalance, thyroid disorder, whatever, something modern science understands. If not, finding out what is "wrong" and all the uncertainties associated with doing so is a proverbial "killer"
Bout, have you looked at the Mayo Clinic Site? I found some good update on Varients of FTD. That is where I became very sure that Jim has the Parkinsonian Varient of FTD. They a are very clear and easy to read site. Also the Report that Someone here mentioned by the Aussies, is very good and easy to read. I printed out the Mayo report and gave it to all Jim's caregivers in the psch unit because many including his psychiatrist and PT/OT just don't get that the messages just aren't going from brain to muscles as they should. They were hell bent on making the poor guy walk again. Sorry folks when the signal is dying, the message just doesn't come across as it should. Sometimes I feel like I am talking to a wall, when I look at their blank faces. The poor OT just looked at me with this dumbfounded expression when I told her we'd pass on playing a game. LOL, they are trying, and everything I'm telling them goes against all that expensive schooling. Oh Well!
Lynne...please listen to the folks who have written about rethinking your relationship. To add to our concern for you....am also concerned about the message you are sending to your daughter. Is it alright to stay in an abusive relationship because of love? Your Mother loves you and wants what is best....as you do for your daughter. Please feel our caring concern.
He isn't abusive now...Since the dx he's all under control with the drugs.... He spends most of his time sleeping or watching TV (or hiding his dirty clothes in random places without my knowledge)
Kate fully understands Ian's condition. We see a counsellor together each month and we help each other out all the time. I believe there is a balance to be achieved here. I appreciate your concern and am very grateful. I will not stay if Ian becomes abusive again....or rather...Ian won't stay here....You rightly mention the message of staying in an abusive relationship, and the damage it might do to Kate.......Likewise, there is the other side of the coin.....I don't want Kate to think it's OK to just walk away and give up, without exploring all the possibilities.
While Ian is passive and under control with drugs, I'll do all I can to care for him, while making sure Kate has everything that she needs. If you met Kate, you woldd see that she is a very well balanced and well rounded girl. She is level headed, intelligent, she can have a person or a situation assessed in moments....she is an outstanding young lady. I'm very proud of her and I tell her this often.
Lynne, you just gave me a clue as to why I'm determined to stick it out as long as I can. Our daughter is adopted - straight from the hospital, private adoption, 42 years ago. From that day on I have made very certain that we never "abandon" or "give up on" any of our many pets, or tiresome friends, even down to house plants (talk about irrational!) And so my husband falls in that category too, I just realized.
I am aware that we are extremely fortunate that he is so compliant and easy-going (thanks to drugs!) that even my daughter said this time around of my being gone that he really wasn't much trouble at all. I'm of course aware that the time may come when I just flat can't care for him any more, but for now we're hanging in there.
Don't construe any of this to mean that I'd not use the DPOAs and living will to avoid any prolonged suffering. But for now, I can keep my determination.
Exactly Briegull, I think being determined and trying to be the best we can be...which involves being strong, makes for well rounded individuals with character and positive strength. I'll be the first to put my hand up in the air and say 'some days I can't cope'. Mostly though, I can cope and I use every resource available to me to help me survive and get through.
I've never been a quitter, and I think that's why I'm who I am today.
I have given up on tiresome friends though.... I can't be doing with negative people or 'takers' or 'shirkers'. I work hard ....I'm VERY MUCH into give and take. Before Ian got sick, we shared everything. It isn't Ian who makes him act as he does now. He can't help it that he is needy and helpless.....That's the illness. Although I have moments of despair (and believe me, some nights I lay there and cry, feeling generally hopeless and scared and alone) It's never as bad in the morning, thank GOD....I have many positive friends, and I know I will come out of this at the other side a stronger and better person. I hope that you do too....
Terry, no DH hasn't had the neuropsych testing. Perhaps that will happen down the road. Right now I'm concentrating on getting him into that neurologist next month, and getting him on the seroquel. Gosh, I hope this will calm him down. More sarcasm from him today. It just comes out of the blue. I never know when I'm going to get broadsided. Very draining. Later this morning he told me, "Thank you for all you do for me. It's a lot." Sometimes I get good things, but the frequent bad things nullify those.
For me, it was pretty much what Debbie said in the "when did you first suspect it was AD" discussion. It was the personality and mood thing. DH also turned rude and mean but mainly with just me. He seemed more abrupt with others especally our children. He was always right about everything and would not see or consider any other view of a situation. Started fighting with me about family get togethers. It was a struggle getting him to go anywhere. Camping and fishing plans became so hard. He had trouble focusing to complete a task. It wasn't that he forgot what he was doing; he just made it so hard on himself and on me that everything had to be perfect. He would work on things like a small engine and be unable to put it back together. Again, not so much forget but become overwhelmed to the point that he couldn't function.
I also thought it was depression or something like bipolar. almost two years ago, I did a search with his symptoms and found a discussion on this site about FTD. I was nearly blown away as it fit so perfectly. As I did more reading about all the various symptoms, I was pretty sure that this has been coming on for at least 10 years. Progressively the following is happening, anger and adjitation most of the time, overwhelmed by little things and discussions, not able to grasp an indepth discussion, some money counting problems (bills not coins), just recently is showing some very short-term memory problems and problems with carpenter measurements. He also has sundowning problems most days.
You wouldn't believe what a problem it has become for us to set up my 12 x 10 cabin tent. I can set it up by myself in less than twenty minutes. With his help, it takes more like 45 minutes. He wants to do it his way which is the wrong way. He always wants to streatch the floor out and stake it down first. If it is done this way, the walls won't go into place correctly when you lift the poles. then he wants to lift the middle poles before the side poles. This causes its own problems. cam't reason out what the problem is; just yells at me for telling him what to do. What I see with the tent is: unwilling to see anothers view point, reasoning button broken, anger, mood, adgitation, not caring for another's feelings. Let's not even talk about what it takes to level our truck camper, or to hook up to our 4-wheeler trailer. Again, I can do it by myself in half the time.
DH has really been pounding on the "how bad the marriage is getting" topic for the last couple of weeks. Saturday morning, he brought this up again. I calmly said "I don't think that our marriage is getting worse, I think it is something else." boy did he shut his mouth and didn't bring it up again the rest of the day. He knows that I have been wanting to get him to the doctor and he doesn't want to go. We doctor twice a year for other things and it may be a couple more years before I will be able to get him for FTD testing.
moral of the story, remember the "He's just so mean and ornery" and be careful of the "saner moments."
Gosh, Mary, what you described in your insightful post is exactly like my DH. It's right on. Thank you so much. That really makes me feel like what I've been suspecting for so long is actually happening. FTD. Period, end of story. As with you, saying it's been going on for 10 years, my problems with him have been going on for years and years too. He, too, likes to make it all my fault. This time he again threatened to leave. As Clint Eastwood says, "Make my day!" (Grin)
Bluedaze, I was typing something to Hanging on and moved up to find your name and lost what I was saying. It was something about FTD taking a long time sometimes and I was refering to your situation. My DH is very capable with the exception of not being very nice and reasonable most of the time. You have had a struggle and are my hero. Ten years or so in my case is long for FTD but not unheard of.
Bluedaze--I know what you mean. He's always shown poor behavior. In other posts through the years I've read that sometimes the abusive behavior they've exhibited before DX is continued after DX, but is worse due to the FTD. They continue their poor behavior, only now the FTD causes it to be much worse, it sounds like.