My husband was diagnosed three years ago with ftd..he does not seem to fit any one subgroup. He has difficulty doing just about any task. He has lost ability to read and write. This week he started some delusional behavior. He is a very gentle caring man so I was very surprised last month when he lashed out at me calling me horrible names. The doctor has him on lexepro. He also started 100 mg of seraquel today. Robert also has problems finding words to use while speaking. My question is? What can I expect? I am his only family/ caregiver.i am also disabled with severe rheumatoid arthritis..my stress levelis through the roof.any advice/ help would be much appreciated..sometimes I wonder if his ftd is going to kill him or me first
My hubby has FTD with behaviour variant. He was diagnosed three years ago but was showing signs of something since 2000, but we had not idea what was happening to my gentle, kind loving husband. He also has AD and Vascular dementia. He was so difficult that I hid in my room when the caregiver ears were not there. I kept my keys on my belt loop and my cell and credit cards in my pockets. I was so afraid of him and so tired. I cried so much.
In Sept 2013 he went to respite at a LTC and decided to live there. He is on Trazadone and now Ativan. He was so aggressive and mean to the staff that I wondered if they would keep him. He has settled down and there are not as many out bursts but he is losing memory, has trouble with putting the right word were it should go and walks and sleeps quite a bit.
I am very lonesome living alone but at least I feel safe.
You asked " What can I expect?" Well no one can tell you that with certainty as each person is affected differently. Have you talked to your a Doctor about placement? If you are not able to care for him at home it may be the best thing for both if you. It's not an easy decision to place your loved one but the question is what is best for both of you?
"Can I care for him as this disease advances? Will he hurt me? Do I have the financial means to place him?"
There are people who can help you make these decisions and help you find the best answer for you.
This is a great place and there will be more coming to talk with you.
This is not an easy journey you are on. Take care of yourself!!
I forgot to say that I live in Canada and our system is very different from the States so, not knowing where you live, I made not comments as to where to go for help.
Redwold, welcome, this is a wonderful place for advice, support and understanding. I am a spouse of a husband who was diagnosed with behavioral variant FTD 6 years ago, but looking back, something was going on at least 4 years earlier. He was 58. My kind, gentle, loving husband became a monster-every chance he got he would hit me, or try to harm me physically. On new year's eve 2007 he almost choked me to death. As jazzy says, what happened first was his lack of judgment and personality changes.
He spent 4 months in a psychiatric hospital so the doctors could adjust his meds so that he would no longer be aggressive towards others. Several combinations were tried but what has been working is Seroquel, Neurontin, clonopin and Ativan as needed. But they tried many, many different combo of meds to finally reach this one. They initially started him on celexa, then changed that to Lexapro and quickly found out he needed additional meds to control the agitation/aggression.
Sounds like your husband has primary progressive aphasia FTD (PPA FTD) variant.Each person is different so I can only share our journey but it may have no similarity to yours. My husband is in thee equivalent of early-mid stage 7 on the Fisher scale for AD and we are still battling aggression. It's supposed to get better however for us, it has only marginally gotten better. It is stressful every hour of the day and night.
And, I believe I'm in a unique position to understand what you're going through because I too have severe, disabling RA. However, we do have in-home help because my husband had LTC insurance through work, for which I'm greatful because although it doesn't pay for all the costs of in-home help, it does defray some. If we didn't have the LTC insurance to help pay for aides, there is no way I would be able to have him home because I could NOT take care of him.
Dear Redwold. This is such a great site and has kept me somewhat sane in this journey. I honestly do not know what I would have done and continue to do without all the amazing people here.
Others before me here have offered great feedback to your questions/comments. My husband also has FTDbv and life was living hell before he went to a facility two years and eight months ago. My work continues as a strong advocate still trying to work with staff to keep my husband and others safe.
I learned after beating my head against the wall for years that the only predictability was unpredictability. I learned to simply go with where he was/is whenever and if under threat try to diffuse or distract or leave.
It is such a nasty disease and daily I too wonder which one of us will die first. The stress is beyond anything I have ever endured.
We are all here for each other thankfully. Take good care of you.
My husband had FTD. I believe for him it was a disease of rage: rage against himself and others, especially me. He had been an avid reader and his work required specialized writing skills. He lost both. Later, his gait was severely affected and other losses followed. No wonder he was angry!
His meds were Aricept (probably for no benefit), Keppra, and Ativan. I believe these two helped. Certainly I would not have wanted to try to do without them, especially the Ativan. He had adverse reactions to Aricept @ 23mg and to Depakote.
I was afraid for myself and for our companion animals. I slept locked in my room with them. Them, and my keys, phone, handbag and remotes for the garage door and security system. I'm sure the adrenaline and cortisol kept me going.
thank you all so much! Btw my name is Donna. I do not think he is ready for long term care just yet. I can see it happening within a year or so. I was just so upset because the doctor started him on seraquel 100 mg last night.He woke up this morning with a terrible headache. I feel just terrible for him.In the three years or so since being diagnosed he was mean verbally only the one time. He was such an intelligent man .he was a professor at a local college and also the director of education. I am 55 years old. he is sixty.he is still compassionate. the problem we are having lately is his dreams are becoming realit to him..this disease is so very sad. I also believe he has AD. The other night he took the dog out at three in the morning..he got lost! I finally found him close to five.Thank God we live in a small town.
Call the doctor and ask if there's something else they can give him. He's either delusional or paranoid or both. Sorry, but it's time to put deadbolts on doors and alarms (not expensive) as well as possibly motion sensors so you know when he's moving about..
Some personal questions...are you still sleeping in the same room & bed? Why would you let him take the dog for a walk at 3am? I was 57 and absolutely not willing to give up my work and freedom, but guess what? I had to do both because it was my job to keep him safe or find a facility that would take him. I made the right choice for me, but it's not for everyone.
As I said my husband has bvFTD and I've been told he does NOT have AD also (even though he has significant memory issues). Eventually all people with dementia have memory loss because their brain is dying. Usually the meds to treat AD do not help (even with the mixed dementia) and in fact can cause behavioral problems with people who have bvFTD as a primary diagnosis. Namenda caused my husband to escalate his violence . Not so with everyone but beware, the drugs to treat AD often have unexpected side-effects on people with bvFTD.
As an aside, you're among friends, most of our spouses were highly educated and/or successful in their fields. They ate well, kept physically active, challenged themselves, etc. All this crap on TV about the causes of AD are the patients fault is bunk.
I plan on calling his doctor tomorrow. He usually takes the dog out, he has lost his ability to do just about everything so caring for the dogs make him feel whole.he usually just steps out the patio door with the dog on a leash and let's the dog do his duty.i don't know what possessed him to take a walk. was three in the morning and I was half asleep when he said he was taking dog out,,of course I jumped up when I realized he did not come in. When I found him he was very thankful and said he knew I would find him. I don't know LDL maybe I am still in denial because he seems so normal at times until I watch him try to do things or we get in a conversation where he is adamant something took place that obviously did not...it has been such a slow gradual change over the last three years starting with short term memory lapses. Eventually I noticed he was having more problems with tasks which eventually led to him losing job and applying for disability. When he was first tested the doctor diagnosed him with A D. It was not till we saw neurologist who said it was FT D. We have not slept together for about five years. We got separate rooms when he became restless at night.
We also have a four year old granddaughter that I care for a few times a week.he has never been mean to her and plays with her,sings to her etc as a grandpa would do. I keep a close eye and never leave her alone in his care but so far so good!
You might have to start keeping an eye on him from a distance when he takes the dog out. The weather is getting cold and he can't be out in the cold that is coming for 2 hours.
Redwold - wanted to comment on your sharing "...he feels he is normal with mild memory problems."
As mentioned, my husband has been in a facility for two years and eight months. He has never had any insight to his decline. Today he would describe himself exactly as you wrote. He thinks he has a paid supervisory position in the facility and looks forward to being able to retire.
He hits people if provoked, has short term memory of 20 seconds, hallucinates and is paranoid even with meds, losing weight, skipping meals due to frustration, and is now getting lost in his unit. Needs constant re-assurance he has a room for the night and staff need to walk him to his room numerous times a day. He regularly tells me, "So glad I am healthy and have a clear mind."
I believe lack of awareness to decline is part of the disease. For years, I was totally overwhelmed with that. Now I have come to see it as a blessing. At least him thinking he is a supervisor gives him a sense of self-worth although I realize it drives the staff crazy at times when he is telling them what to do.
He was in a management position for the last several years of his career so I guess that focus has remained in his dear brain.
today Robert ((my husband ) said to me " I am not as bad off as you seem to think" so, Thank you for responding ! It really helped because even though I know he is terribly I'll there are moments he almost had me convinced that maybe he truly isn't as bad off as I precieve him to be. Reading everyone's posts has helped so much.We live in a very small town in North Dakota. (Population 266 people).We just moved here five months ago so I could be closer to my children.Before we moved it was just Robet and I. I have no support group. I am so thankful I found this Forum. after reading many posts, I find myself almost feeling guilty for some of my thoughts. I love Robert with all my heart ! Yet , when I read a few posts about people that have had ftd for ten or more years,,,I found myself thinking " there is no way I can do this for that long" without it killing me first! i hope I don't come across as a terrible person for thinking that way, even though Robert was first diagnosed over three years ago..I noticed changes in 2005. It's been a long road. my first husband died of lung/brain cancer six months after being diagnosed..Now this! Sometimes it's just to mucj
I can relate to everything said here. My husband started out with FTD. Very slow decline over ten years. It has been a living hell. His has the Parkinson's symptoms which is claiming his body. He has been incontinent for years. His condition resulted in him becoming home bound as he wasn't able to stand or walk. He is now in total skilled care nursing home for the past year.
He is 74 and is now very memory impaired. His symptoms have progressed to the point where he has to be fed now. He can do nothing for himself. They have to use the standing machine and Hoya lift to transfer from chair to bed. He is able so far to sit in a specialized wheel chair and eats in the dining room with others but has to be fed. He is getting to the stage where he can't sit up, keeps slumping over. His body is stiff. He is a robust looking man and other than this disease, he is healthy. A cold could take him out tomorrow, but also could live for years. He remembers people and their names.
He can't even brush his own teeth. But...a few weeks ago, he found a way to take off in his wheel chair as he was going to get out of that place. I didn't believe it when they told me. So what to expect, only God knows. It's like Mr Toads wild ride at Disney. Always something new and alarming.
Be sure that all the legal issues are taken care of now and watch everything, especially the money. He gave most of our savings to theRussia. Government. There is also a sexual component for some. His was going to the strip bars. Praise God I didn't find out until he was in the nursing home. any behavior that isn't what seems ordinary, it is the disease and try to make decisions before you need to. This is a very cunning disease. Hang on, you aren't alone now or YOU aren't crazy. They will make you feel like you are.
thank you so much! I have the durable poa taken care of as well as me being his health care agent. He has not handled or shown interest in finances for years. When he first got sick, we spent thousands of dollars on tools for him( he of course "needed them" because the reason he was "off" was lack of hobbies etc..of course he never used any of them. I am very observant and notice even the smallest changes. today was dat three of him starting the med seraquel for delusions. first day gave him a headache, but today he did great and was in a good mood. Recently I noticed something going on with his right hand...he was trying to pick up his socks but his hand just would not grasp them..his next neuro appt is jam 5th.I'm sorry to hear about your husband. I cannot even comprehend being at the point you are right now! Yet, I know it's comming.
As far as sexual behavior. Nothing strange yet! He has not shown any interest in about seven years . as a matter of fact there has been no erections at all even in the mornings
My father-in-law had AD and lived 20+ years after diagnosis. My mother-in-law literally killed herself taking care of him. He lived another 9 years. My sister-in-law was diagnosed in 2005 and died this year. I pray my husband is more like his sister. It has been 6 1/2 years and I can't imagine 20+ years. I am already tired of this - him & this illness, and my life on hold. I pray every night that when I wake up he will has died but he is physically healthy except his brain. He is 67 now and I am 62.
Redwold, be grateful he's not oversexed as paul says. My husband was addicted to porn the internet, ran up credit card debt he couldn't pay (and didn't, ruining credit) and made amorous advances to me every 30 mins or hour while we "slept" (no sleep because he was constantly bugging me). It was a miserable 1.5 years.