Art had the sleep study done last night and came home with the equipment. I didn't go because they said it would take 2-3 weeks for the results. Now we have to figure out how to use the thing cause he can't remember how. Fortunately my son got one a couple months ago so he can help some. The neuro wanted to check for sleep apnea to see if it was in part responsible for progressing on to AD. Wouldn't that be the end if his dementia is sleep apnea caused?
Charlotte, My DH also has sleep apnea and neurologists wanted to consider this and his diabetes (type 2) as possible causes of the memory problems. But his psychiatrist and sleep dr. could show he had was compliant (for sleep drs. that means 4 hours of use of CPAP a night ) and yet his problems increased (and the diabetes was well controlled and even then doesn't seem to cause memory problems anyway).
He hasn't used the machine in over 6 months. He started to turn the machine off in his sleep and chewed on a couple of masks, so it was no longer useful for him. But, it did increase his energy levels in the beginning.
I've been reading these threads on FTD since the neuro suggested on the phone that DH might have FTD (instead of the diagnosed AD). He is going to study the scans again and wants more testing, including a spinal tap (which I haven't decided on yet). I think Siem has symptoms of both AD and FTD. I have been reading that loss of initiative, extreme lack of emotional warmth, no empathy whatsoever, lack of awareness of one's own failings, are typical of FTD, as well as overeating, craving for carbohydrates, non-sensitivity to pain; that is all Siem to a T. However he does not have the lack of inihibition (no dirty jokes, sexual innuendos, in fact so far no inappropriate behavior in public except occasional nastiness towards me and a couple incidents of shouting at grandchildren). We go to restaurants and concerts, so far without any problems. His memory loss is worse in the long-term; he remembers a concert we went to yesterday, the different musicians and pieces that were played, and the building (which he liked). But he doesn't remember a series of concerts that we went to a year ago and that he liked very much at the time.
Jeannette, our last neurologist thinks DH has FTD rather than AD because he IS AWARE of his failings. This dr seemed to think that the awareness was a distinguishing characteristic of FTD rather than AD. However, I'm not sure that pans out in reality. My DH has more frontal lobe issues than anything else, executive functioning at 20th percentile, lack of empathy, NO INITIATIVE, but he also isn't having any of the loss of inhibitions in public to the degree described by others. So, I'm still not sure. Plus he's still able to drive and run simple errands, cook and feed himself pretty much, and it was my understanding that FTD is known to progress more quickly than AD. So I'm clueless.
Pam, thanks, no hallucinations or dreams and I don't think any slowness and stiffness. He's still hard for me to catch up to on a bicycle. But . . . it is getting harder for him to look round to see how far behind I am!
Terry, I'll try to find a link to a website that described the unawareness as a typical symptom of FTD. My DH resembles yours with all the other symptoms. Except he does not cook, but then he never has.
Here is a link: http://neuro.psychiatryonline.org/cgi/reprint/17/3/413.pdf although it is not really the article I was looking for. And here is a quote from the above link: (in which "loss of insight" refers to insight into one's own illness, failings and consequences of these failings)
Loss of insight is particularly characteristic of early frontotemporal dementia (FTD). Consensus criteria for FTD include loss of insight as a core diagnostic feature of the disorder, and patients with FTD display a greater loss of insight into illness early in their dementia when compared to patients with AD. Compared to other FTD patients, those patients with greater right frontal disease have more apathy.
Weejun, absolutely, mine too. This is a great article on Anosognosia (Unawareness of Decline or Difficulties); I recommend it to everyone whose LO does not admit that he/she is impaired.
The authors of this article, by the way, do not make any difference between the occurrence of anosognosia in AD and FTD patients.
My husband has been diagnosed with FTD and he has absolutely no awareness of what is going on. I have spoken to others on the FTD Support Forum website and it seems that most pFTDs don't have an awareness of what is going on. It seems to be a minority of people who do have an awareness of their illness like Susan's husband. I do know that memory is usually not one of the first things to go but behavior changes are. My husband has had disinhibition but not in a horribly inappropriate way in public. He has not had sexual innuendos, dirty jokes, or anything of that type. His shows in laughing at things that are not funny, singing and dancing while we are in a store, saying things out loud that you normally wouldn't like "why is that lady so fat". He is very self-centered with no empathy for others. Changes in his diet--eats things he wouldn't normally and a constant craving for sweets.
Weejun, thank you. Your link helped me understand DW more than any reference on FTD I've read yet over a period of nearly a year. She will not consider being evaluated for these special problems I've observed her having for about 3 years now. According to her she has no problems. The paper described my experiences, and her behavioral changes, to a T. She is only 51 and physically 'healthy as a horse'.
I don't know what is going to come of all this. That, for me, is the scary part. But, in the meanstwhile, the paper really helped me understand some important ways I can modify my daily life in a way that can help her as best I can.
Tonight reminded me once again how dreadful FTD is..out of the blue attacks..I made him apologize..for me, surely not for him as he will forget. I HATE this life!
Kathi -- I hate it too, and I'm still up at almost midnight -- wishing I had a real husband and a real life -- oh, well, we'll all get up tomorrow and start all over again :o) Hugs and a tad bit of rope to you, dear!
Well, Kathi, we don't even share the same bedroom anymore -- and that is a curse and a huge blessing. My suite (bedroom, office, huge bath and two walk-in closets) is my refuge. I've got the TV, phone, computer, tub, and the pups...what more could a girl want? (Maybe the "old" DH??)
Odd, but I was thinking about viewing old videos of past fun vacations just to see what he was like then..too depressing? I truly can't recall what he looked like and how he acted just a few short years ago..too used to what we have for life now...or lack of . Must be late, as the depression key has been hit here. Bummer.
We also have some videos of old trips -- I don't watch them -- haven't in years. Every once in awhile I see a photo from just a year ago and am amazed at the change in his physical appearance. Wonder what folks who last saw him then would think??
When I look at old family photos I am always surprised at how happy we all look. At least I have the memories. My heart aches thinking about our younger members who never had a chance to develop memories.
I look at pictures from just 5 yrs ago and wonder who those young, healthy, couple are, so much in love. We have aged, and look so worn out. Oh well....................................................
I don't think joan will mind me posting this link here. And goodness knows it's probably been posted on the site, if not this thread, before. I just found it though and wanted to bring it TTT for others that might not be aware of it. My apologies to the rest of you.
My situation hasn't changed. No DX and no idea of when we'll have one IF one is even appropriate. I just keep looking for clues as I know all of you do. The link below is just another tool for me. This site was just the first I found on line. You've all been very kind to me and you don't know how much I appreciate that kindness. I feel now that I have two families on line I can visit with when things "get too much".
Take care all, and I'll be back. Always.
http://ftdsupportforum.com/ (I'm registered at the link above as AlteredState)
It took a couple of years to actually get the diagnosis but the changes began (where I started noticing changes) in 2004. My husband had been diagnosed with bladder cancer in May of that year and went through radiation and chemo. His behavior began to change that winter where he became "not a nice man". He was rude to me, his kids and everyone else. He was short-tempered and almost had some fights at work. We thought it was "chemobrain" but no doctors would agree with me. After about 2 years he became very apathetic and stopped talking to everyone but me. When he wasn't at work he just sat in his chair with a blanket over his head. He didn't even really acknowledge his kids during this time. Then he started repeating himself and forgetting things. He worked shift work and a couple of times he even worked overtime because he didn't realize his shift was over and he had to be told to go home. This is when I really started pushing for him to see his PCP.
I didn't have the problem you have in getting him to the doctor because he always took care of his health. I know he didn't think there was anything wrong with him but he went because I asked. His PCP did every blood test imaginable to rule out other illnesses that could mimic dementia and sent him for a CT scan and referred him to a neurologist. The CT scan came back normal and so did all of his blood tests. He also had his depression medication tweaked as suggested by the neurologist as that can mimc dementia also. Well, my husband did seem to get better for a few months and I was blissfully unaware that he was having problems at work.
On July 1, 2008, he was sent home from work due to confusion and his company insisted he see their psychologist for testing to make sure he could safely return to work. This began the actual final process for diagnosis. During this testing we found out that he had no abstract memory at all among other deficits. Then I took him back to the neurologist who sent him for an MRI. This time the MRI showed atrophy of his frontal lobes indicative of FTD and this was the first time I heard the term "frontotemporal dementia". His neuro then sent my husband to the neuropsychologist for testing and he agreed with the diagnosis after getting the results. My husband has not worked since he was sent home from work.
We were lucky in that we were given a diagnosis rather quickly compared to others I have seen. We've been very lucky with all of his doctors and I was never told like a lot of others that he was to young to have dementia (he is now 59). My husband knows something is wrong with him but doesn't quite get it and doesn't worry about it.
I really hope you will be able to get her to see her doctor. If you want to email me, my email is in my profile.
Boutoutaluck, I am also on the FTD site (same name as here, but I haven't posted yet as far as I can remember), since the neurologist is starting to suspect that my husband's original diagnosis of Alzheimer's may have to be corrected to FTD. My husband also has complete Anosognosia which made it hard to get him to the doctor. I waited for a long time, suspecting Alzheimer's but knowing there was no cure, and feeling he was happier when unconfronted with any idea that there was something wrong. Finally my DIL who is a nurse convinced me that the medicine that was out there might be useful to have even if just to make life easier, so I went to the PCP by myself first, with a list of symptoms and behaviors. He promised to call DH in on some other pretext, but when the first blood work turned up only negatives, I heard nothing more for a long time. Had to take action again myself, started sending emails and finally DH got letter inviting him to an appointment at a geriatrics center at a university hospital nearby. This sounded pretty neutral, nothing threatening, and DH has great respect for the medical world and did not like it but did not violently object. So began the process of scans, interviews etc that led to the diagnosis (now probably wrong, as it turns out) of Alzheimer's in December 2008. Later when words like "Alzheimer" and "dementia" started falling, he would get angry and refuse to go, but I would tell him the appointment was for me and I needed his support. He hates to stay home alone, so he always goes along and once there will not refuse the nice nurse who comes out and calls his name. He never objected to the scans, because the girl technicians were so nice to him. He would describe the various machines and his experience in them to friends and family in great detail.
Thank you, JeanetteB! You lit that proverbial light bulb for me. I feel kind of stupid now, but it dawned on me after reading your post above that my PCP makes appointments for phone consults in 15 minute increments. This is in the works as I type this. Though she is not a patient of his I can at least describe her 'symptoms' to him and he can tell me what he can rule out by some blood work and a physical examination. This information I can pass on to her. She has been pleased with the treatment I have received from his office and she appreciates his holistic approach to medicine. This might just be a way to get her motivated to get into his office. Plus, he's an hour and a half away so I have the perfect excuse to accompany her if this works.
Thanks again so much for sharing your experience. I'm kind of dense about all this and I hope I'm all wet as to what I fear is wrong with her. You've helped me to at least formulate a plan, though.
And I hope your situation can soon be clarified for you.
Good luck Ed. I am also on the FTD site as was Jim when he was still at home. He enjoyed being able to chat with other's who had this disease. I am there as Suzie, due to the large number of Susans. I don't go there often, I prefer a spouses point of view, and much prefer this type of format. I find the other confusing. Let us know how you make out!
I feel the same. I joined that site quite a long time ago, and everyone has been very friendly, but the "spouse" situation makes this far superior...and the friends.
Okay, I did it. So far, so good. Talked to my PCP yesterday. Only took 15 minutes, too. He said to send my observations to him in an e-mail so he could look at them point by point so he could have better idea of what he was dealing with and maybe ask me some further questions before we set up DW's initial visit with him. That is IF I could get her to agree to one.
Well, I spilled the beans to her when she got home from work about what I'd done and what I was going to send him today. She went wacky bananas ballistic on me. I kept my wits about me and about 30 minutes later she had agreed to schedule an appointment in the near future. Even though she wasn't real happy about the way I went about it. I was kind of shocked that it worked. At least it's worked so.
A note about what his initial feelings were based on what I verbally described to him. First, he said he would check her hormone levels. Of course all the other blood work associated with a physical exam. Plus he would probably want to take a hair sample so he could check for mineral and metal toxicity levels. At the end I felt comfortable that he knew what he was talking about and would do a thorough job of looking for the treatable things that might be causing her problems. He also indicated to me that many times something as simple as an infection could cause dementia type symptoms. It all sounded reasonable enough to me. But, what do I know?:)
Anyway, looks like we're off on some kind of journey. I'm hoping for a short one with a happy ending. I'm just relieved to get started.
Ed, I am really proud of you. It was quite a step that you took. I need to take this step and am really dreading it. I guess that I am waiting for things to get worse so that I will be believed the first time. Or that DH will at some point understand that he has a problem and will willingly agree to tests. Any way, way to go; you did a good job.
Thanks for the encouragement, Vickie and Mary. But, I'll say it again, I wouldn't EVEN have had the idea to begin with if I hadn't found this site beforehand. I guess sometimes it really does "take a village".
I'll keep you all updated as to how this all plays out for us. The main reason not being so I can be 'rooted for', but so that someone else may benefit from my experiences somewhere on down the road the way I have from you all.
So true, Ed, things would have been easier for me if I'd found this site in the pre-dx days. I was surfing the net, but not doing the right searches. And having no idea that somthing like this existed.
just found this site - am locked in my room with my 2 small dogs while my husband rages around calling me all the names under the sun as i asked him to walk the little dogs on the grass as it was getting too hot - he escalates so quickly lately - then he is telling me he is normality and loves me - the seesaw is affecting me but i am frightened of getting him into care as i do not know how much his behaviour is just related to me - he seems to behave better for others but aggressively to me - i know i am not perfect and try to reason adds to the situation - what to do - he said he would kill anyone (police) if they come to take him away as i threatened to have done - i do know i should not have said that but i was at the end if my coping ability at that point too ! this has been 2-3 years of gradual decline into a very difficult situation - the neughbours do not speak to me which adds to my feelings of inadequacy - i give him a lorazapam (ativan) to calm him down if i can but have also taken it myself in angst - i have no one to help day to day - his 90 year old mother will have him for a day or two a couple of times a year however that is not udeal - he will not go anywhere else - saying this is MY HOME.
i actually posted this on another discussion then found this which is far more relevant - my husband was diagnosed with alzheimers disease 3 years ago however the symptons did not fit what i lived with - i raised this with his doctor last visit and she agreed he seemed to be showing more of ftd - echoing sentences - quick to anger to start with - anyway - not sure what to do next - appreciate the comments and sharing here - !
Welcome, jannyjam. My husband had just the "regular" Alzheimers, but others here have had spouses with the FTD--they should be along with some advice. I've read many a posting from others that sounded like what you are describing.
Jannyjam, Others will be on shortly to advise you and give you support. But now let me jump in. Being a caregiver should not put your health, safety or life in danger. And that sounds like the situation you are in now. Other members of this site have said that they keep a bag packed so that they can leave in an emergency should that be necessary. Do you have family that is involved? Someone you can call? Has this happened before? I will carry you in my thoughts and prayers and will continue to monitor this page. Know that you are not alone.
I posted on your other discussion and lindyloo is so right.don"t put your health and safety or life in danger. My husband has bv FTD and can be a handful He is in LTC and is much better there. I seem to be the main target for his nasty tongue. Noting I do is right or up to his standards. I have been living alone for 4 1/2 years and I am much better. He was never physically abusive but verbal is just as hurtful. Call the police if you need to and let them deal with him. Be careful!!! Bee Safe!!!
Also join https://www.ftdsupportforum.com. An invaluable resource for us dealing with FTD.
In rereading your post, are their guns at home? Are knives locked up? I ask because of your husband's threats and I wonder if he had means to back them up or if he is just yelling.
If you are locking yourself in a room for safety it is time for a plan for calling the police. As I mentioned in the other thread be sure the police are aware of his condition now so they can have him on a list of vulnerable people and hopefully will act accordingly (unfortunately police are known to shoot people with mental illness or dementia when called to help). And eldercare attorney should be able to help you with a plan.
Think twice or three times before calling police. An acquaintance of mine was "forced" by the sheriff to place her husband after calling them too many times. He had a.power wheel chair and would trap her with it against the wall and keep running into her. He was big and she was small. Had.to call for help to get him up a few times too. She didn't have legal affairs in order and had to sell some property that was her property, not community property. It was a real mess.
A lady here called the police and made the mistake of saying she was at the end of her rope and the cops took her to a mental hospital for 72 hour suicide hold leaving her alzheimers husband alone at home and not allowing her to call someone to check on him. He survived, but geeze.
I locked up the hand guns and got my brother in law (retired LAPD) to take the rifles. So far have not hidden knives. I made mistake once of allowing myself to be in a corner when he was raging and drunk. He landed three punches. Broke my glasses and I was black and blue for weeks. Now I am constantly aware of exit strategies. Never allow myself to be cornered. It is stressful because he is now stalking me and I have an exaggerated startle response like with PTSD. I have a room with a door I can lock. I have a.go bag packed and checklist of things to pick up quickly like cell phone charger. He can't drive any more and I control the keys. If I leave I take the keys with me. He doesn't wander. If he did I would have to find someone to check on him if Ihad to leave. Or I suppose I could stay near by and follow him with the car. I don't know how I'd handle that.
I also locked up the beer and booze that very day of the punches. I found a source for nonalcoholic beer. He hasn't had a real beer since that day. I write a letter to his doctor when we go in. His doctor will call in a prescription to try to control the violence if I call him. I decided to wait on medication. I have modified my behavior. Also as he deteriorated he has become more compliant. He shouldn't be able to learn new things, but he is becoming accustomed to some changes.
My cousin was forced to place her FTD husband much earlier than she wanted to because she couldnt deal with the behavior problems on her own. Her husband was a gentle giant of a man. She adored him. She is a nurse and would have doted on him at home gladly for years. I still can't believe God would be so cruel as to give this wonderful man FTD. Katherinecs' story on this board is even more horrific.
I don't say this to be mean or cause you to panic. You have to be careful. You are the one who kniws him best even though alzheimers has turned him into a completely different being. Get legal affairs in order right away! Make your locked room as comfy as possible and stocked with some water and snacks.
The good thing is generally if you remove yourself from the room pretty soon he forgets what he was raging about and even that he was raging. For my hb it takes about 15 minutes. Then he thinks I should be back to normal too. Unfortunately I can't forget and it takes me much longer to calm down.
I took a 12 week course for caregivers at my local Office on Aging. It was very helpful with strategies to communicate and manage my stress. Best part was lists of resources to help and a presentation by a lawyer with knowledge of medicaid and VA benefits and planning for those events. Even though I am not likely to ever qualify for medicaid I still met with her and will consult with her as things deteriorate here at home.
Since I don't live in the U.S. I don't know what's available. But I've been reading some pretty scary stories & wondering are there not any residences or facilites these violent spouses can be placed in? Please forgive my lack of knowledge. I feel so sorry for all of you living in fear. I have sat here & sometimes have cried when I read the comments. Hopefully I don't offend anyone by asking this question.
I live in Ontario Canada and in the city I live in we have a brand new geriatric physic unit and when you call the police if you feel in danger they come and take the aggressive person there. I have two women from my support unit who have had their partners taken there from home and they are quite happy with the care given to their partners. It give the Dr.'s the opportunity to adjust meds and if they are not on meds to get them on to the proper meds before they go home. I don't know what the USA has for this help but I am happy with ours. I wish you all the help you need.
Jazzy, I also live in Canada, which is why I don't know what's available in the U.S. for the placement of dementia patients. We lived in Ontario all our lives until 5 years ago, when we moved to Quebec to be near our daughter & granddaughters. To my knowledge we don't have a geriatric physic unit here. I don't know how the police here would have reacted if I would have called them. Fortunately, I never had to - although my husband did show some aggression towards me.
Nicky, in the US it is a hodgepodge. If you are lucky you might live close to an ALF that can deal with violence. There are also special programs that provide evaluation, medication adjustment and placement recommendations. My wife was in a 3 week program which recommended she stay in their facility. Some people in the US move from one state to another just live close to an appropriate facility. There are no national standards.
paulc, thank you for the information. The public long-term facilities in Canada are subsidized by the provinces & you need to meet certain criteria & be put on a waiting list - sometimes for 2-3 years & I think sometimes even longer. The wait on the waiting list varies from province to province & so does the monthly rate. The private residences set their own rates (which are higher that public LTC) & you can enter those anytime - no criteria needed & sometimes might be on a waiting list, but not for too long. Some people who can afford it, start in the private while waiting for a place in the public LTC, providing they meet the criteria. If you're healthy, most people stay in their homes until they can't & then enter public LTC.