I am a 40 year old and my husband 58 has been diagnosed with FTD moderate stage. This is all new to me and I am wondering, since being told he is in stage 5 how long does each stage last.
He has been out of work for 5 months and is showing more and more signs every day. He talks about going back to work , but I know there is no way he will be able to do it. He has just started taking exelon patch along with 9 other medications. He has lost about 25lbs, does nothing but sleep all day and watch tv. How can I motivate him to do something other than laying in the bed?

angelb
I am sorry to hear about your husband. We have alot in common. I am 46 and my husband is 56. He was diagnosed 2 years ago. We had confirmation with a PET scan this year that it is consistant with Alz. He stopped working after 38 years on the same job March 14th of this year. When first diagnosed he seemed to fall asleep very early everyday. I don't know if it is the Namenda or other medication or he is not as depressed now but he is not sleeping as much in the daytime. My husband needs direction of what to do each day. Making a list doesn't help, he forgets the list. I am at work in the daytime so his mother keeps him pretty busy at her house. No one seems to know how long each stage last, each person is different I am told. I too would like to know. My husband seems to have leveled off somewhere between stage 4 and 5. You will be in my prayers. I still get angry about this at times. If you need to talk let me know, I will give you my email if you would like.
jm29

Angelb,
FTD and ALZ are different forms of dementia. There are treated differently ( meds) and the stages are different. Please e-mail Younghope1 (Tracy). She has FTD and lots of experience.

Good Luck

Peace and Hope,

Lisa428
I did not mean to imply that FTD and Alzheimer's are the same thing. I was just saying that she and I could relate on what we are both going through. I apologize if I have taken your email the wrong way. I know that I am not anyone to give advice on this. I would hope that no one would take adivce except from their doctors. I may be a little touchy today I am not sure.
Thank you
jm29

dear jm29,
I am so glad you responded to me this was my first time on any message board ever! My husband sleeps off and on all day long and it can't be from the exelon patch because he just started taking this medication 1 week ago. We have seen so many doctors because he didn't want to believe the diagnosis. Yesterday I was really frightened because he went outside to move his car in the driveway without my knowing and when I looked outside I couldn't believe how the car was parked it was literally on the lawn, I am sure the neighbors must think he has been drinking since noone knows medically what is wrong all they know is occasionally the car is parked up on the curb. He cannot follow simple task that I give him. He wore his slippers out to the store with me, he has never done anything like this. He is not bathing , brushing his teeth, not flushing the toilet, putting things that go in the pantry in the refrig and vice versa, he is also writing checks out of sequence and I can't find the book he is writing from and the balance is totally off. How do you take the important things away without embarassing your spouse and how do you remind them of bathing. I am very young compared to him and we have only been married a couple of years, and I can't believe how drastic things have changed. The reason for the question about how long the stages last, it seems to me just about 8 months ago is when I notice a little forgetfulness and now it is everything fullblown and the neuropsychological testing with several physicians have verified that he is in stage 5.
I would like to have your email address so we can continue to talk.

dear lisa428
Thanks for the heads up. I will try to write to Tracy. Yes as far as the FTD and AZ from what I have learned and experience already is that my husband having FTD is having other medical issues because it is associated with other illnesses and diseases. I think I am correct that when you are diagnosed with Dementia when you are young, you deteriorate faster than someone getting ALZ at a age say over 70, am I right? He has lost 30lbs ( 8 lbs since Dec), he is literally only taking in about 400-500 calories a day. I am so nervous about this that I want to make sure I am making all the correct decisions. When do you know a person shouldn't be left home alone?

Hi, My grandma was diagnosed nine years ago. Problem is she never had it. It was due to many different factors that were treatable at the time and now are not. I beg you when I say Doctor your Doctor. Listen to them because of course they only have your best interest in mind but do your own research as well. Doctors here had my grandma on many many things not only should she have never taken but for conditions she did not have. I of course cant say that is what is happening in your case but my grandma declined in a period of six months from fully functional to a state where she could not longer be left alone. If you would please check out Melatonin if he has something called "sundowning" it has helped her immensely. I wish you luck I pray for everyone that has a family member or has themselves this terrible disease.

Welcome Dementia Friends, you have found a great community of support, warmth and education. YES, FTD is different from EOAD. FTD is primarily affected in the frontal temporal lobes of the brain which is decision making, comprehension, problem solving, executive functioning, etc. As well as verbal aggression, anger, etc. The medications that are used to treat AD will usually make the behaviors in the FTD worse as they work on chemicals in the brain that usually require a different medication for behaviors (hope that makes sense). I don't always say what I am trying to say very clear. BUT, you really need to check with your doctor on this as I am not a doctor and am only giving past experience and knowledge. The medications cause drowsiness or fatigue and that will cause us to sleep so don't always think it is the disease, maybe the medication is too much and needs to be adjusted? FTD tends to progress alittle more quickly in younger people BUT keep in mind that just as medications affect us, every person is also different, we don;t progress the same. Try to keep your LO's mind stuimulated doing things they enjoy such as fishing, yard work, crafts, spring cleaning, etc. it does make a difference.

Dear younhope1
thanks for the info. That is the problem my LO doesn't want to do anything but lay in the bed, watch tv and sleep off and on all day. He comes down for meals when I call and then back to the bedroom. He has been doing this for the past 5 months. So are you saying the exelon patch is for treating AD and not for FTD?

I am saying that according to my Neurologist as well as other materials that I have read that the medications used to treat AD such as exelon, aricept work the opposite on the brain and CAN cause increased aggression. HOWEVER, Namenda is a medication that goes along with those other medications but works differently in the brain and is used as a "cognitive booster" so to speak. Maybe with that and something for depression and some coaxing from you it would pull your husband out of the wanting to sleep state all of the time. Talk to his doctor, anything is worth a try.

angelb, please post your questions on the Caregiver Forum. Johanna C is an RN, with lots of experience with FTD patients, and she can offer you a great deal of excellent advice. She may not see your posts here.

As Tracy told you, some of the medicines used to treat Alzheimer's can cause a problem for FTD patients.

thanks

angelb
Please email me at jackiem29@bellsouth.net. if you need to talk.
jm29

Also, angelb, may I suggest that you check out The Alzheimer Spouse website:

www.thealzheimerspouse.com

It is for those of us whose spouses have AD or other dementia syndromes. It's a great group, very supportive, who know what you're going through. The main page has blogs written by Joan, the Administrator, plus links to special topics, an Alzheimer Store, etc. The link to the message boards is in the menu on the left.

Dear angelb: I am so very sorry for all that is happening. How very difficult and frustrating this must be for you, not to mention very frightening.

I am an RN whose mother has FTD and I also have a step-dad with AD. They certainly are two very different disease processes.

If you begin to write on the Caregivers Forum section of this Message Board, you will get much more input. This is where the majority of folks come to communicate. All kinds of dementia, all age brackets. But of course, that is up to you.

There is a website for the Association for FrontoTemporal Dementia, AFTD. You can Google this and they have alot of good information.

If you go to the search button on the Caregiver's Forum, I did an, "Abstract FrontoTemporal Dementia", you can click on that and read the brief synopsis. This abstract pertains to generalized FTD and not Pick's FTD. Do you know whether your husband has Pick's or non-Picks?

Do you have a good Neurologist to manage your husband's diagnosis and care? This is a critical piece in care management, even moreso in FTD than in AD. Medication is crucial, and yes; meds like Aricept, Namenda and Exelon have been, according to what I have read, contraindicated in FTD as they tend to make the disease behaviors much worse.

My mother's symptoms greatly increased on Aricept.

In FTD, the patient usually will remain quite alert and oriented and fully understanding of all day to day business. Of course, there is usually excruciatingly poor judgment and poor impulse control. Together, it creates many challenges which increase as the disease goes on.

In FTD, there is specific atrophy of the brain in the frontal and temporal lobes. In AD there is a diffuse atrophy across the brain.

FTD has marked personality changes very early in the disease. AD has subtle personality changes, often later in the course of the disease.

FTD retains memory until the latest stages, AD has memory loss early on.

Some of the challenges are disinhibition, tactlessness, inability to feel empathy for others, impulsivity, lack of judgment, heightened irritability, agitation, developing of a rigid set of false beliefs which are called, delusions.

These false beliefs coupled with being alert and oriented can lead to much mischief with banking, buying things, accusations against others, etc. There is often an absolute need for control.

In some patients there is a progressive aphasia - decreased fluency of speech, decreased verbal output, and difficulty understanding receptive communication sometimes the written word, sometimes the spoken. My mother, later in late Stage Five, developed an inability to watch action on TV - she could not interpret the swiftly moving action and it caused her extreme discomfort.

My mother, over six years had no verbal issues. However, this last year she began to have verbal difficulties and soon thereafter developed swallowing difficulty and is now on pureed food.

She has also now lost the ability to sit upright and to use her hands/arms in a purposeful manner. She has moved into Stage Seven on the Alz's scale.

Do know, when discussing all of this; each person is different and can have a very different course of disease.

My mother's worst period was during Stage Six of the disease. She was nastily delusion driven and had major behavorial issues. Stages will overlap and not everyone will fulfill every single step within a Stage.

It is variable how long a stage will last. My mother spent three years overlapping Stage Five and Stage Six. It was quite difficult. Mom has been noticibly afflicted for about six years; however, in looking back, we think she may have been exhibiting changes easily as early as ten years ago. It was so subtle - and this disease is very slow to grow.

FTD usually has a slow onset and one mostly sees prominent changes in personality and/or language.

Remember, memory, copying and calculations are usually spared until mid-late disease stages. Many FTD patients can seem so normal but are so compromised. They can also be quite manipulative and cunning in gaining their own ends. I used to be awestruck at how creative my mother's manipulations were.

Also, because of delusions and manipulations, they can forget the truth and make their own reality and sound so good while they do it, that others believe them. This presented many problems with the doctor. My Mom could pull herself up by her bootstraps and conduct herself very normally for a short period of time and fool everyone while telling whoppers. Oh my aching head!

Very commonly will be changes in hygiene, grooming, mental rigidity, inflexibility, distractibility, persistence in focusing on one thing, etc. There are often dietary changes and often persecutive behaviors.

Very often, they will accuse and verbally/emotionally abuse the closest caregiver to them.

My mother developed an aversion to anything new coming into the house - crockpot, vacuum cleaner, article of clothing - had to get rid of them as she fixated on them.

She began to eat less and less, then fib about how much she actually ate. She lost about sixty pounds.

By the sound of it; it appears that all of your husband's symptoms may well be from his FTD.

Truly, DO consult with your Neurologist. This is crucial. Your husband's FTD may take a slightly different course. Also, if you can find a support group in your area, it would be extremely helpful for you in coping with all of this.

We tried everything with my mother over a very long period of time. Finally, her quality of life became so compromised with all interventions failing. We consulted Neuro who ordered Risperdal at a very low dose. What a miracle! She became SO much better. Not perfect, but much better. No more delusions and better controlled behaviors. She also began to eat better. She has still declined, but she did not continue with severe agitated behaviors.

You do know, your husband should NOT be driving any longer. One, you do not want him to injure himself or someone else, AND you do not want to have a lawsuit on your hands if someone else is hit and/or injured.

Do you have any support in your/his family? You can use all the understanding and help you can get.

Please take care with the bank accounts, credit cards and bills. That is attractive territory for mischief when there is FTD to deal with.

Some patients have a faster course than others, I have not heard of it related to age, but then I am not a Neurologist.

I hope I have not scared you, that was not my intent. Do Google as much as you can on FTD and read, read, read. Education will enable you to stay one step ahead of your husband and will enable you to speak from a point of knowledge with his health care providers.

I wish you well. Please do come and let us know how you are, I will be thinking of you.

CORRECTION: This is why I should never write late at night when I am so tired I'm half asleep.

ARICEPT has been found to be contraindicated with FTD. I have seen this in literature and have also experienced that not all MD's are current with this. My mother's primary certainly wasn't.

Namenda and Exelon are a bit different. These are being prescribed with FTD and I have not seen definitive literature as yet stating they are contraindicated.

What I have seen are experiencial notes re use of Namenda and Exelon with an FTD loved one and not being tolerated well for some. Some have mentioned increased symptomology - coincidence or not? Don't know, but one would have to look at everything and get MD input (always).

Sorry for the blip in thought.

Each person is SO different in how they react. Like ANY other medication - observe and assess very closely.

angelb,,I'm so sorry about your husband's diagnosis,,,I'm sure that this has just put your world into quite a tailspin to say the least.

I only have a few gentle suggestions for you,,,#1,,take away all car key's and hide them,,or get a security box at the bank to keep them in,,as of all other valuables that you don't want your husband to have access to. I say this,,because one of these days he's going to tell you he's moving the car...and he will take off and either get lost or possibley have an accident.

#2...Check into Adult Day care for him,,,they will keep him busy and occupied with activities and socialization,,all geared for him and his "disability".

#3...Don't know if your tried it yet or not,,but how about getting him out clean clothes and running the bath for him,,and assisting him,,tell him that you and he are going to the Dr,,or out to eat,,or shopping,,whatever tender fib you think that he will believe.

Maybe when you are brushing your teeth,,you could have him come into the bathroom with you to brush his.

You are so fortunate that you are still able to work outside of the home,,and that your MIL is still capable of helping with the caregiving of her son while you work. Of course,,I feel so badly for you ,,,work all day,,and come home and "work all night" too with all of the caregiving ,,,it has to be draining,,how well I know.

I'm so glad that you've found this site,,its such a wealth of info and support. I wish you strength to get thru it all,,and hope to see you posting again. Peace

angelb and jm29,

I invite you to visit my website - www.thealzheimerspouse.com. It is devoted exclusively to the unique issues faced by spouses of Alzheimer patients. It is filled with support, information, and my daily blogs relating my experiences and struggles with my AD husband.

joang

Thanks so much. I will visit your website.

Hello angelb,
Just wanted to let you know that you are not alone in this. There are many people here that understand all that you are dealing with. You have been given good advice from all that posted.
I am also a RN and my husband has FTD. He is 57 yrs old. He is seen by a neuro and a psych doctor. His medications include razadyne, namenda, and cerefolin. He is also on geodon for the anger issues he had. He also used aricept and exelon(not together, at seperate times) but each was discontinued. The most improved status I have seen with him is since the use of namenda. It is so important to find a doctor that has the knowledge to treat FTD. FTD is not like alzheimers, there is so much different, even though the meds are similar in use sometimes. Since it does affect the frontal and temporal lobe areas of the brain by atrophy of the cells, every case is different but similar. What one person with FTD has showing the signs of the disease does not always show with another. My understanding is that it shows with what part of that brain is affected and the amount of brain atrophy. You will see changes in emotion, behavior, motivation,judgment, executive function, and speech. My husband also shows signs with tremors, parkinson type symptoms.
I have not found anything to motivate my husband. He sits almost 24 hours a day on the couch with the TV on. I know that this is part of the disease but I still get frustrated and want him to do more. His neuro doctor said when I asked what could I do?, she said I was beating my head against the wall...he has lost that function. But...I still encourage(sometimes just make him) by saying "We are going to do this now" He usually responds positive but it wears me down so much. But the moment I don't say anything, he is back on that couch doing nothing.
I know what you are going through and I know how hard it is. Sometimes the overload is so great to bear. But..you have found a safe place here to vent and many will support you.
Linda

Kind regards, angelb. A good book on the subject of managing communications with your husband is: A Dignified Life. Bought it a Borders Books. I'm sure online at amazon works as well. There is a very special way to communicate with the afflicted so as not to hurt their dignity. Such a disease! Certain things are intact while others are not. My wife is appx. stage five ALZ and I'm fearing the future. I found the "best friend" approach in the book to be very helpful. Try saying let's do this or why don't we go find that. The inclusive nature of the sentence seems to work. I wish you all the best and feel free email or post again. I too am new to "chats" so may have left something off here. Jim

I have just read actually everyones stories...For everyone I am sorry. I have been searching the internet for days on FTD, my husband who is 46 has just been told he has this. I am devestated, The doctor told me it is time for me to "step up to the plate" get power of attorney, living will and get our finances in order. I need counseling and our children also. I felt like my heart was in my throat. My husband just reassurres me he is ok, he still persists on going back to work. The doctors also told me do not trust his judgements, well that is the hard part for me, I am a stay at home mom with 5 children, he has always been the one to work, never missed a day and even did side work, he is like a jack of all trades, I havent found anything my husband couldnt do or at least give it his all, my father always said he is like a webble. "webbles wobble but never fall down" may sound strange but true. I have been trying to research all I can , thats when I came across this site, reading the stories from everyone has me thinking of alot more questions to ask the doctor, I understand now there are stages, nobody has said what stage we are in, they have started him on aricept back in april, I have read its bad..? He is also schedule for a fusion on his back, I read its not a good idea when you have FTD. I am probably babbling on, I have so much going threw my head I find myself thinking faster then I cant type. I still havent told our children 23,17,12,7 and 4 but I know we will have to soon, I dont know how much the younger ones will understand. Our 12 yr old is already a little worry wart, if the sky looks grey he wants us to head to the basement, if a light is out on our car, you cant drive till its fixed so I dont want to much worry on him.. our 7 yr old, well he is our Dennis the Menis, little tuff guy and our 4 yr old...daddy's girl, our princess. our older ones I know can understand but I'm sure it will be hard, Thanks for listening!

Dear mom of 5: We have two children are 28 and 25, with grandchildren age 4 to 11. At the very least, you need to tell all of your children, the little ones also, that "daddy" has a problem and sometimes gets tired and doesn't feel good. If he gets angry when he is tried, they need to know that it is not their fault. They need to know that during these times, they should be a little quieter and may be find an outside activity. If you don't pre-warn them, when your husband starts having personality changes, anger fits, and/or agression, they will think it is them and wonder what they did wrong.

Although we haven't been to the doctor for it, I am pretty sure that my 54-year-old husband has FTD. He exhibits all of the agression symptons, personality change, etc. I have told my grandchildren that when "grandpa" gets on edge or gets tired that they need to give him some space. I tell them that it isn't their fault and that grandpa can't help it. Even the two 4-year-olds understand this. I hope this makes sense and helps.

As for big kids, my daughter age 25 has told me that "she doesn't get it." meaning that she either can't see it in her father or doesn't want to see it. She asked me very coldly once, "what do you want me to do about it." I tell her that just knowing what we are dealing with and being thoughtful is enought. I want them to be kind to their father even if he isn't being so kind to them. I also want them to be able to lend a supportive ear to me when I need it. My son age 28, tells me all the good things if I call him and need support. He will visit often and will find a good reason to leave, if his father starts getting adgiated. It is so helpful, when the children know how to handle and how to react. Also, it is important that everyone knows that reacting and fighting with them doesn't do anyone any good.

I don't understand how someone who has others living in the house, especially small children, can handle the pressure. I live alone with my husband and it takes so much concentration and energy on my part to "keep the peace" and handle his anger and agression appropriately.
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