My husband Charles,was finally diagnosed two years ago.I can remember abnormal behavior way back eight years ago.Then it was going the wrong way in traffic,not being able to figure out how to do things,both at work and at home.Deep Depression,and sleeping alot,excessive affection,was evident then.Charles has other serious problems,such as Diabetes,Kidney Failure,Retinopathy,Thyroid Disease,Fatty Liver Disease,Anemia,Neuropathy, Bipolar,Recently added Cists on his Kidneys.He will take all diabetic medications,meds for high cholesterol,high blood pressure,but he refused to take anything for his frontotemporal dementia.Charles has been depressed,paranoid,sneaky,suspicious,sexually inappropriate,agitated,loud,violent,and has transferred his deep affection for me,to a 36 year old nurseing home patient,with severe brain damage.She has the mind of a 12 year old.He met her in the first nursing home he was in,and although the staff runs him off when he visits,he still wants me to take him there.Charles was in that nursing home for three months in 2010,back in another September 2011 through march 2012.Charles tries to run away from home,and tells people he's leaving me.He saw a physiatrist in 2011,and it was she,along a complete mental evaluation and a pet scan that diagnosed Charles.She was afraid for me to be alone with my husband,as he had boasted that he would get rid of me one way or another.She would get upset with me,for bringing him to her office without one of our grown children.In 2010 right before his first attempt to leave me,he tried to chock me to death,and admitted that to the psychiatrist.Their have been many episodes,of violent,agitated and very unreasonable behavior,especially over the past four years.I still don't trust him even now,he is not anything like the husband I had,before this horrible disease became evident.The complete personality change,was early 2010,along with heavy cell phone use,in private,to ladies,and female relatives.He lies to these people about me,and was never capable of any of this behavior when he was normal.Charles still is believed to be normal by a few people.Our grown children are in denial,and our daughter has left us behind.Our oldest son,won't hear a word about any of it,but our 37 year old son has seen the abuse toward me,with his own eyes.We have been through the food fads,mouthing of objects,in his case he continually chews on cigars,and spits.Charles won't drink anything but Lipton diet green tea,and hasn't for the past three years.I've quit giving him access to money,except for church offering,because he would frequent the florist,and spend several hundred dollars at a time,buying arrangements for other ladies.He also gave large amounts of money away.I'LL write another time,Rose
rose, I am glad you found the website you are among friends here. we know how our spouses can be conniving and aggressive and annoying and then portray almost normal to the outside world. if he gets violent please call your emergency numbers and have him evaluated by a psychriatric hospital if you can. you should have not to live in fear. if it were me and the dr diagnoses him and prescribes medications I would give it to him in his foods. we do anything we can to keep them compliant and not to have to live in danger. if hes choked you and you fear for your life, I cant see how the dr cant have him admitted for evaluation. I would ask about that. many of us have to come up with a way to get the meds into them if they are not willing. we can not make it thru this journey without pharmacology. its a living nightmare without the right combo of meds. many here are where you are or have dealt with aggressive situations. please take care and if you can do a search of past topics here there is much info on the subjects. take care of yourself and stay safe. divvi
Rose I know just how you feel. My DH has bv fronto and he is a handful. He is not giving away money or buying flowers for other women but he can be pretty nasty. He has decided to move to a LTC about an hour from our home and has given away everything but he kitchen sink in order to downsize so I can sell the house when he has moved. I have to keep running behind him to make sure I have something left for me. He is insisting that I sell immediately and move to an apt. Near him but he says I can't come and visit to often as I may interfere with his activities. He has told me that it is either he move there or we will be getting a legal separation as he does not want me as his caregiver. I have had no violence towards me but he will scream and yell at me and cashiers or anyone who does things that are not o his liking. I know it won't be long before the nasty part gets worse so I am very happy that he has decided to make this move on his own. I looked into the Fronto support but they said he didn't have true Fronto and it was so different that they would be of no help to me. We have another Fronto in DW's ADP but she is not presenting the same as he is. Her hubby says she is not anything like my DH. I understand from his Dr.'s that BV is very difficult one for the caregiver and it sure is true. I wish you all the best and that you will keep safe. Never turn your back on him and make sure you have an escape route plan in place. I carry my car keys attached to my belt loop and my i.d. And credit cards and other info in my pocket and my cell phone in the other pocket. This is a terrible way to live but I have had to get out of his presence very fast a few time and it was scary. He has now calmed down but you just never know. Again please be safe. He was number six on the list last Thursday so hopefully it will be soon. Jazzy
Rose, my husband also has bvFTD and was diagnosed 5 years ago. It is a very difficult disease for the caregiver to deal with and the behaviors frequently exhibited include aggression, physical violence, spending large amounts of cash or charging many purchases on credit cards, hypersexuality, attempts to run away, you name it. I have been through it all and although he is on meds (an ever challenging balance to get them right) we still deal with difficult behaviors. You must find a way to get the meds into him to control him and you must always keep yourself safe. As Jazzy has said, keep keys, cellphone and any other necessary life saving equipment handy. My husband also choked me within an inch of my life (before he was diagnosed). Recently I heard a renowned psychiatrist say that if anyone tries to choke you, it is a sign they are trying to kill you, not scare you. I found that information frightening because I came within an inch of my life and never thought my husband would want to kill me. Thank god we've not had any more chokings but every day is a challenge in making sure he is not aggressive and its 5 years and many medications later. Our local geriatrician who specializes in dementia told me last year that his behaviors will only continue to worsen until he is near death. It is truly a difficult road but you're not alone.
Yes, everyday is a challenge. My husband had FTD. Initially there were problems going back to 2000, but ADL's were not really affected. There was a serious incident in 2004. He was dx in 2006 and by 2008 was seriously affected. He died unexpectedly in 2012 following a very rapid decline.
As posters here have already said, it was much the same for me. To walk on eggshells with no break except for fractured sleep and naps, for years and years. To go from being loved and respected to hated and despised.
For some reason, maybe this is somewhat due to the threads I've been reading today, I have been thinking of the times he was hospitalized, acting out to make a long story short. Everyone saw what he was like but he could turn and flirt (YES!), on a dime and they sent him home again, with only me there, over and over.
Stay safe. This is a community that will really be here for you.
My husband also has FTD coupled with AD. It's hell on wheels....The behavioral issues are hour by hour--at any minute hell breaks loose. My husband became extremely hypersexual which drove him to porn sites which escalated to "escort services" which he was frequenting almost daily. It cost us thousands of dollars as he was making almost daily withdrawals from the ATM machine alternating our checking and savings accounts. Evidently he admitted to using these "providers" but never apologized. I was told to, "get over it"!
The temper and mood swings were out of control. He threatened to kill me several times..he accused me of cheating on him and having a boyfriend. In public he would swear vulgarities. He didn't care who heard him...children, neighbors or strangers. He grew more and more distant as time went on.....finally when I made my discoveries of his adultery I cut my marital status off. Do I love him? I care for him and what happens regarding his welfare. I feel sorry for him. However, I no longer trust him nor will I ever. This disease ruined our marriage, almost ruined my self-esteem, and damaged our savings.
Where is he today---He has become physically weaker and more dependent. However, there are days which I call his good days---these are my "bad" days because he reverts back becoming so very nasty.
Please visit here often...you will find compassionate people who are also traveling this journey. You will find many supportive members. Take care, Lullie
. Dear Paulc-Divvi-Nikki-Jazzy-LFL-Abby-And Lulliebird. . Thankyou all for your concern,compassion,and for being the wonderful people you are.My heart goes out to all of you,and you'll be in my prayers.We don't have any support groups in OKLAHOMA for frontotemporal dementia,so I'm so glad to have found you all. . Charles still gets agitated on a regular basis,has a short attention span,and acts as if he has no concern for anyone,or anything.He last worked in 2006,as I met with his employers,and found out he wasn't mentally competent to do his job any longer.He still can't figure out how to do any of the things he once did.He sits around,complains alot,sleeps,eats,and talks on his cell phone,to a bunch of sympathetic ladies,who don't have a clue about the real Charles.The part he likes,is that that don't know me,and they'll believe all his lies.I'LL write again soon,Rose
Thank you Nikki,and God doesn't give us anymore than we can handle.We were so close,before this tragic disease.I want to see the old Charles,who was introverted,but sweet,and loved me more than anything,but as he gets worse,I realize I never will again.He seems to have mellowed out some,over the past 6 months though,that's a blessing,although still hateful,hostel,sneaky,suspicious,and obnoxious at times,he's calmed down alot.{Hugs}Rose.
Good to hear from you Rose ♥ I hope his doctor can find the right cocktail to help curb his behavioral issues. We had horrible aggression and rages, that was bad enough.... my heart goes out to you and all our members who have yet more stresses with behaviors to deal with.
. Charles takes meds for diabetes,high blood pressure,high cholesterol,thyroid disease,etc.He will not take antipsychotics,mood stabilizers,antidepressants,or anything else that might make my life easier.Several doctors,and one psychiatrist have tried,so far he has been defiant to say the least.And I've been advised to hide them in his food,or drink,tried that didn't work.The last nursing home that he was in also tried,and failed at that.In the state he's in now,he is extremely suspicious of everyone,and everything.Rose
Yes I remember the battle I had trying to get Lynn to take his medications. It really would help his frame of mind and bring you a bit of peace, keep trying it will be worth the effort. Do you know if they have tried liquid medication? Many drugs do come in liquid form and that makes it much easier to hide in their foods. Crushing very very fine is another option, though often there is a bitter taste that needs to be masked with something sweet. Best of luck Rose ((hugs))
My husband also has FTD/Alzheimer disease (as mentioned earlier). In the beginning husband was hell-bent on not taking any medicines. Has your husband said why he is willing to take his diabetes, hypertension, cholesterol, and thyroid medications, but not the others? Perhaps knowing his reasoning "why" will allow you to combat this problem.
As Nikki mentioned, liquid medications are easier to hide in foods. I have crushed husband's medicines into a powdery mix and camouflaged with a sweet desert (applesauce or chocolate pudding). Disguise the medicine by flavor and sight. Do what is necessary...use "fiblets" ( I don't advocate lying), but "fiblets" are a necessary with this disease.
. . Dear Lulliebird and Nikki: . I just asked Charles why he won't take the mood stabilizers,antidepressants,etc,and he replied "I'm not taking anything artificial". . Husbands with these dementia's don't have the ability to reason anymore.As for food,and drinks,Charles orders what he wants when he wants it.I haven't cooked regular meals in years.When Charles does eat,it's sometimes in the middle of the night,or anytime of the day or night,I get in the kitchen and fix it immediately, when he wants it.The only thing Charles drinks is L green tea in 16.9oz bottles.He drinks approximately 7 24 pack cases of these per month.Since he only eats what he tells me to make,and very often how he wants it made,there's not much room to hide anything in it. . . Another example of his inability to reason would be,Charles's nephrologist wants to put a stint in his arm to prepare him for dialysis,and Charles won't let him.Charles told him that he wasn't having dialysis,and the consequences would be transplant,or death if his kidneys fail.Rose
Rose--As long as your husband is taking some meds, I don't see the need to hide the psych drugs in food. Can't you do some therapeutic fibbing? For example, get a prescription for say, an anti psychotic. Buy a bottle of natural vitamins--dump the vitamins out--put the anti psychotics in. Say there's a new study that proved these vitamins are great for diabetes/hypertension, etc. (one of the other conditions he has). If needed, get the doctor to go along with your story. At this point, you are fortunate that Charles will take some drugs and you can expand on that. Later, his awareness should lessen and hopefully, he'll be more cooperative.
. Dear Jazzy: I keep thinking about all that you are going thorough,and I know it's hard for you.Will you be okay if you sell the house?You must consider what's best for you,and the best way to go on with your own life.Please let us here from you,Rose
Rose, when my DH needed anti anxiety meds, I told him "the Dr. wants you to take this for your heart". I never had a problem using that fiblet. Good luck.
I will be fine financially, but it's the living alone that concerns me. Since we just moved here last years have no friends and if I move there where he is going I have no friends. That is the big one for me. If he were to die suddenly I will need the house money to help but I will still be alright. He has always been there to talk to and to do things with but now he is just off by himself and seems to be leaving me behind. He just seems to want to be by himself. I wonder if he is doing this to help me?
I hope not. But he is hard to handle and I am the enemy for sure. Always wants it his way and can be pretty hard on me. He is nice to others. He doesn't spend much, more into hoarding his money. Even from me. He just saves and saves. I guess I shouldn't complain about that.
. Dear Jazzy, . I can understand that,Charles is also hard to handle,and is spoiled to the max.What I can't understand,is why do our husbands suddenly turn against us,their wives,when we were so close before the disease became evident? . I'm happy to here that your going to be fine,no matter what happens,I know how expensive those LTC facilities are.Rose
Just a comment on meds. When well, and even in the early stages of FTD, my husband was very into yoga. It seemed to correspond to his high level of interest in supplements.
On the other hand, he had periods of time when "the doctor said...." would have a negative effect on him. So, to piggyback on what marilyninMD said, I would buy bottles of supplements, like different B's and add the Rx to them. Since they are usually in shaded containers I would dose them out to husband. The true supplements were larger than the true meds so I never was concerned about mixing them up. He had no access to the actual containers.
(By this time he was well beyond filling and using a med tray.)
I double lied, saying "what an interesting article you told me about "biotin". I picked some up and here is one." I was trying to attach the med to his initiative and not to a condition or an illness.
Hello,this is Rose: As I've previously stated,Charles has bvftd,and in the winter months,from December to May last year,Charles developed pneumonia,Three times.Is this common,when Frontotemporal Dementia progresses,and their immune systems decline?I'm worried about this,because winters coming on again,and he's already had a couple colds,he has a sore throat right now. The last time Charles had pneumonia,he refused to take antibiotics,and steroids,that were prescribed.He is making more irrational decisions than ever.He all of a sudden, doesn't think he needs his doctors,and recently refused to take a Para thyroid xray scan,because it is a nuclear test.Previously he had refused to have a stint placed in his arm,to prepare him for Dialyses.Please share if you have any thoughts,on any of this.Thank you all,Rose
Rose, so sorry to hear that your husband is susceptible to pneumonia. I believe all dementia patients become more susceptible to pneumonia as their brain continues to decline and their immune system becomes increasingly weakend. My husband also has bvftd and fortunately he has not had any medical issues. He did have aspiration pneumonia a few years back but that's because he has difficulty controlling the amount of food he puts in his month and had some swallowing issues.
Dear LFL . Thankyou,for your comments,I do appreciate any input you have to offer.I'm glad your husband,is in reasonably good health,under the circumstances. . Today,Charles was worse,and I called his doctor for an appointment,I can't get him in until next Friday,but if he gets worse,we can put him in the Hospital,if necessary.Rose
Rose, I am sorry to hear Charles is doing poorly and I hope he is cooperative to the doctors suggestions. It seems a life time ago that my husband Lynn was able to give me a hard time about taking his medications. When it was something important that he have I would find ways to get it in him, mostly by hiding it in his food.
Lynn is late stage and since he stopped being able to walk in 2010, pneumonia has been a constant threat. I think some are more susceptible than others and that yes, it is part of the decline with all of our loved ones, regardless of the dementia type.
Hi Rose My DH has bv fronto as well and he is now in LTC for two weeks . When he was home he treated me like crap. Sometimes I was afraid of him as he would just swear and yell at me. He would also make fun of me and treat me like I was incapable. He told his nurse that I was not trained to care for him so he was not going to listen to me. I was told that they usually mistreat the very person they love the most. I think it may be because they no longer see us as partners but we become the ones who are now BOSS and that is not going over very well. My DH was always telling me I was not his boss. Remember, their filters are gone. Now that he is in LTC he has lots of "BOSSES" but that is fine. He listens to them with no problem. They are trained to look after him. He says he misses me and when a I go to visit he holds my hand and tells everyone who I am and says he can't wait for me to come back. It is all so confusing and right now it is good between us so I will just try to spend as time as I can with him as his memory is really deteriorating. Last night he couldn't remember what he had for dinner, just an hour or so after he ate. He gets so frustrated. He has had no problem with pneumonia as he is still very active and physio is now getting him doing upper body exercises. All you can do is you best. You didn't cause this disease so take care of yourself. Keep posting. Lots of love here
Dear Jazzy, . Charles did see his nephrologist,and his primary doctor on the 4th.He also had a nuclear scan,and another test for his thyroid.The day went well,and by then most of his congestion had cleared.They did prescribe a steroid spray,for his congestion,that he has thus far refused to take. . I'm sorry to hear that your husband is deteriorating,and forgetting things.I am very pleased to hear you say that he is holding your hand,and treating you right,when you visit him.I can imagine it's lonely for you at home,without him.Hugs,ROSE
THANK YOU TO EVERYONE ELSE,I'M THANKFUL FOR YOUR CONCERN,AND KINDNESS,AS I KNOW YOU ALL HAVE SIMILAR PROBLEMS OF YOUR OWN.I WISH I COULD GO INTO SOME OF THE OTHER THINGS CHARLES HAS PUT ME THROUGH.ROSE
Has anyone experienced their husband refusing necessary medical test?Charles had the nuclear scan xray test,on his thyroid,and they found a lesion.Now,Charles is refusing to have the ultrasound,the Doctors have ordered.Rose
Rose, my DH NEVER liked going to the doctor. When our family doctor suggested he go to the neurologist & when our children finally convinced him to go, he went. After about 3 years of follow up visits every six months he decided that he didn't want to go anymore, & nothing I said changed his mind. Thankfully our family doctor took over & prescribed any meds that he needed. I looked at your profile & you guys are the same age as we are (my DH has been in the Veterans Home for a year now). So to answer your question, yes & sometimes when they make up their mind it's very difficult to get them to change it.
. Dear Elaine,Charles has said just recently that he didn't need any of his doctors,and with all of the diabetic complications,and the Frontotemporal Dementia,I'm sure he wouldn't last long without them.He isn't capable of making any rational decisions now.Rose
I do not have that problem but I know others who have to deal with it. Is a huge problem if no official dx has been made, but also a problem if they are convinced they are cured or refuse to take their meds and for non-dementia medical problems.
My husband had dementia of the Alzheimer's type, but he, also, refused many tests and/or doctors' visits., including specialists. This caused the additional problem of ex-wife and stepchildren trying to legally establish that I wasn't taking proper care of him. So it's important to let the doctor and everyone else know what is happening. Follow up with emails for a paper trail. Cover your a%*#. You probably don't have this situation, but some of us have.
Dear Mary, . I do get blamed for many of his bad decisions.Charles has either directly,or indirectly,turned me in to APS five times.I spoil him,and take excellent care of him,in my opinion.I'm just as kind an gentle with him,as possible.I try to remember,that he can't help being disagreeable,hostile at times,and aggressive toward me.I am proud of the fact, that I have never mistreated Charles.Rose
I used to get told to must make my wife do certain things. So much easier said than done. At least my SILs who said it understood that it wasn't so simple. And sometimes they are right.
. Dear Paulc, . I'm dealing with Frontotemporal Dementia,and it's more complicated I think,than Alzheimer's.Charles ability to reason,just doesn't seam to be there anymore.I can't get him to do anything,it has to be his own idea.One of the first symptoms of bvftd, is their sudden dislike of their spouse/caregiver. . My dad had Alzheimer's,so I have first hand knowledge of that disease also.I wish you luck,in taking care of your wife,and I appreciate how hard that must be on you.Rose
Rose, many of us here are dealing with bvFTD; paulc is one of them and so am I. Yes, in our situation, my husband moved out of our bedroom, started calling me hurtful names and became physically violent. He is a handful - kind of like a caregiver's worst nightmare (I guess all our "spice" are). He doesn't listen to me or his 24/7 caregiver; I was just thinking today that he has the worst of every dementia persons behaviors
. Dear LFL, I didn't know what kind of dementia Paulc was dealing with. I think all of us living with this horrible disease,have experienced some or all of the things that you mentioned. Charles and I haven't shared a bed since I can't remember when.He has definitely been physically violent,but hasn't been calling me names,at least not to my face.I deal with the sullen,hostile behavior alot,or he's not speaking to me for hours at a time.He chews cigars,and spits,watches one tv with no sound,while watching another tv with the sound turned all the way up.He still thinks he's in love with a young girl in a wheelchair,from the first nursing home he was in.He has her picture on the front screen of his cellphone,and stairs at it constantly.I think all of our husbands with this disease,are a handful.Rose
I am also dealing with bvFTD and a TBI on top of that. My wife moved to an ALF in August due to her behavior. She does best when they stick to routine, she gets bent out of shape when they don't follow the activity schedule (this problem is partly due to transitioning to a new activities director). It is difficult for her because she is one of the most capable residents in her ALF but she has made friends with residents, only staff. She phones me about the smallest thing that has happened (ate breakfast, went poop, took shower). She is pretty independent but has walked into a construction zone without realizing it and will have the occasional tempter tantrum.
We are also dealing with what is probably bvFTD. After many years of outbursts and other typical FTD behavior, our last 6 months have been pretty darn good. DH started taking 15mg phentermine in a.m. and 10mg citalopram (celexa) in p.m. What a difference these have made.
Dear Paulc, . I'm so sorry that your wife has to be in that place,instead of home with you. . My brother also took care of his wife,with FTD,my sister n law had a different type,as her body crippled around her.She was diagnosed in 2003 and passed away in 2009.She also lost her ability to speak,but she did use her computer,almost to the end. . I think it must be harder on a man,to take on the roll of caregiver for a wife,than it is for a wife,to take care of a husband.I have always waited on my husband,doing everything for him around the house.I can't imagine him as a caregiver for me.Rose
Dear Mary, . I'm glad to hear the meds have made such a difference,I wish Charles was on something,as I do get my feelings hurt alot.He will take all of his prescribed meds for diabetes,and its complications,but he has always refused anything prescribed for his bvftd.Rose
Rose, can you crush the meds and put them in something like applesauce or yogurt? We could not have made it this far without the meds given to DH. That's one thing he's compliant with-taking his meds. I'm sure I would have been dead by now.
Don't get me wrong, the med adjustment efforts to get the right combo to control behaviors but have him still be functional has been a long process. And as the disease progresses changes need to be made because the previous combination/dosages no longer work. He's had 2 geri-psych hospital stays (1 month, 3 months) and endless visits to a geriatric psychiatrist as an outpatient.
Dear LFL, . What you've suggested was tried right after his diagnoses,in 2011.Later that year,they tried to give him meds in a nursing home he was in,to no avail. . Lately he's been especially hateful,and insulting,it's really affected me.Rose