Over the past couple of hours I have tried to start a discussion here. I've poured my heart out about h, past and present, and about my struggle, more difficult every day, to keep myself somewhere close to sane.
My posts just do not show on the board. I am sad I did not get the chance to share.
This one worked. One word of advice. Write what you want to put in you dicussion in word or whatever program you have and copy and paste it here. That way you will not loss what you wrote until after you are sure it posted.
Abby, I looked up any previous comments you may have made to try to say something helpful to you right now and don't see anything. I hope you'll try again, using Jim's advice. It's frustrating when you lose a post - it still happens to me. I don't know where you are or what time it is. It's 3:00 a.m. here in Vancouver, Canada and I'm up to take some cough medicine. There has been a wave of bad colds here, at least in my neighbourhood, though I think I picked this up in a crowded eye specialist's office last week. The doctor was running 3 hours late for her appointments. Next year when I go to get the results of a regular ultrasound, I'm taking a thermos of tea, a granola bar and a Mandarin orange. Jim,what are you doing up so late? Or is it very early where you live?
Oh, Abby, that's a shame. Please do try again, following Jim's suggestion to write in your word processing program, then copy and paste into here. We'd really like to hear from you.
Please take Jim's suggestions and write in your word processing program, then copy and paste to here. Apparently there is a time limit on writing comments - over which I have NO CONTROL - and if you are writing for a long time, it signs you off. At least I think that's what happens. My e-mail account does the same thing. It won't stay open indefinitely - some sort of safety feature.
Also, I know this sounds stupid, but it has happened to me many times - Don't forget to hit the "post comments" when you finish or else what you wrote will not show up.
There is a time limit as Joan said. And it then signs you off the board.
An easier way is when you're finished with what you want to say, copy the whole thing onto your notepad. That means drag the cursor over every letter and word you wrote so that it is all blue and then right click the mouse while over the blue part and click on the word copy. Then post your message. If it goes up fine, if it doesn't resign in and now just paste your message and hit the 'add your comments' button.
Don't forget the comment window scrolls so make sure you go to the very top and then let the comment window scroll down to the bottom. Try it a few times and it will become natural.
...or you can write part of what you want to say, hit "add your comments" and start another post to finish. We really want to listen and help if we can.
I've written a whole page of comments and when I clicked add your comments it told me I wasn't allowed. Dumb me I wasn't signed in ;) I've done that twice. I try to remember now to sign in each time just in case Ithink of something I want to add. Yes, I'm signed in this time
Thank you to all who responded. The holiday weekend was pretty bad, or calling it as it really was: terrible. I spent most of Christmas Day searching this forum for topics such as "rage outbursts".
When I tried to post last night it was on an android with a virtual keyboard. The first attempt was so very long and I was so very slow that I can easily believe I timed out. Each subsequent attempt was shorter; maybe that it how one post finally made it to the board. Thank you for your concern and suggestions!
Also, last night, I thought I had to tell everything at once. I was frustrated with my situation and it all came out.
My H was dx with MCI in 2006 and that was changed to FTD in 2009. Earlier this year it was changed again, to "generalized cerebral atrophy". We are in our early-50's. Some days he sleeps for 18 hours then other days he paces. He seems to crave carbs. His neurologist said that his brain first lost the ability to process executive functions and now, with substantial decline, his brain sends mixed signals to body systems that regulate and register sleep patterns, appetite, and the passage of time.
His career is gone; he has not worked in some time. He truly believes he has a life of no stress, and I guess that is true. Maybe I am getting to be a better actress, because I try to project acceptance. I can't show any feelings or say anything at all really, because everything has to be fine, fine, fine.
So much of what has been written here has helped me so much since I started reading, probably in September. I will never understand why the door closed on H and probably never will. Even if I ever do, what does it matter?
I just need to communicate with those who understand this pain.
Second time I have tried to write this. Hang in there. Although I have no personal experience with the problems you are facing, many on this site do and will be eager to help you. Our lives have taken weird turns. We are all doing things for our LO's we never even knew about. Welcome.
Abby - I'm so sorry you need to be here but it is a good place to come for understanding. All this seems so unfair for anyone but somehow it seems to me doubly so for someone so young- you are the age of my children. We are in our late 70s and have had a good life - no matter we weren't ready to face anything like az. There are folks on this board who can empathize with you and lend some advise. I can only tell you that unfortunately you aren't alone so pour out your frustrations and know you will be understood.
Can you believe I lost my post? I don't think I hit the right button. In a nutshell: I gather that he is the one having rage outbursts. It's time your doctor was made aware of this and your husband be put on some medication to control it. It's too scary to ignore
abby-my husband had FTD. It is a terrible disease. While we can't change your husband's diagnosis we will be here for you so you will never be alone. Medication can make a big difference.
Abby- My dh is 64 and has Alz. Last year he went through the rage thing for several months and I knew I was at the breaking point when my blood pressure went over 200. I took him to a new neuro and he put him on meds. to control the rages. They worked great for him and within a couple of weeks he was calm as can be. He was on the drugs for maybe 4 to 6 months and then the neuro slowly took him off the drugs and he has been a calm person since then. Hope you can get some help from your dr. with meds to control the rages....I know it is so terrible. Hang in there we know and understand what you are going through.
hi abby. i hope you have had time to get in touch with his dr and request a medicine powwow on something to help mellow him out. many refer to FTD as AD on steroids they can get so out of control. also make sure you are in no danger when it escalates and have your phone and a safe place set up in case you need it. they can rage out of the blue over nothing. sometimes just your presence is enough to start them on a rant. i hope the dr can get him calmed down. we can and must do what we have to while dealing with this dread part of the disease. divvi
H went through a period of rage last year. The neurologist said that at that time H could appreciate what was happening to him and was angry, This was especially because he hated to see me doing things for him that he used to be able to do himself.
He has not raged for several months, but I sense it simmering. I think that on Christmas eve I said something because I was simmering too.
He takes generic keppra, genetic aricept and lorazepam.
Could posters who mentioned meds say what the meds they have used by name? H had no luck with aricept @ 23 or with depakote. After those experiences I am afraid of other meds.
I sleep with my handbag near me. My car keys are in it and my cell is at my bedside.
If anyone even a year ago told me I would be living like this I would have told them they were in crazy town.
Look who is crazy now!
Dr. says H. is generally docile and these occurrences are intermittent.
abby--Intermittent doesn 't mean they aren't serious, just that you have to stay aware and be ready to treat. If the Dre. doesn't want to medicate continually, the Lorazepam you'reusing can help with episodes. Ask about size of dose, and frequency it can be used. Originallymy H was allowed 1/2mg onceortwice when needed. (Dr.s seem to be very coinservative with some meds. As he's progressed, his dosage has become more even and level.He takes 5 mg spreads ovber the day, but if needed I can give him more (up to 10) but I need to letr the Dr. knowwhat's going on ifanything b egins happ[ening that would require that.
There are many meds which can level out mood swings, agitation, sundowning, etc. Don't be afraid to try them. Your LO='s life wioll bne better when he is feeling and functioning more normally. Some of the meds do carry Black Boxwarnings. If you were to read them through, they are basically saying the meds could possibly (not for sure) increase the risk of a heart attack or stroke by some tiny degree, but they can't say for sure because there weren't sufficient older, or demented patients tested with the drug. Everyone must decide for themselves what's best for their LO. In our case, my DH takes at least 2 Black Box drugs, even though he has VaD. To me the day to day quality of his life now means much more than the slight chance he might have a major Heart Attack or Stroke and die a bit sooner than if he didn't take the meds.
Abby, My husband was on Seroquel for awhile, but, it made things worse. Risperdal worked better for him. He was on Risperdal, Namenda, Lamictal, Keppra & Razadyne ER, for a few years. After a couple years, Namenda & Razadyne ER were discontinued, I saw no difference...so they were not helping. He also took Klopin & Trazadone at night. I also have read the Aricept is not a friend for FTD.
Abby: My dh was on Risperdal and Seroquel...they both helped and had no problem with him taking them and he had no bad side affects....I would use them again in a heart beat.
I will investigate both Risperdal and Seroquel. I think what really shocked me was H's response, totally negative, to Depakote, which I had always understood to be one of the more benign meds. H had delusions which started during the second week of very low dosage. With generic aricept, the 10 mg dose seems "good" for him compared to none but with the increase to 23 mg the delusions increased again.
I would have no hesitation regarding the black box warnings and agree with the quality of life comments.
Yes, H has always done well with lorazepam. For years and years he took it for generalized anxiety. Now he is up to 3 mg, using the 1 mg tabs spaced through the day, it sounds similar to what you described, carosi. Definitely one to start in the am. My, correct that to his, doc (one of them anyway) advised supplementing the lorazepam with good old generic benedryl.
Kadee and bluedaze, I understand from the star after your names that your LO has died (?) Would you be at all comfortable sharing how long that was after the FTD dx and how old your loved one was?
I was not prepared for H's dx to be changed from FTD to generalized cerebral atrophy. The change was made based on MRI results. I saw in chart notes that the code is different.
Sometimes I even wonder what really is a rage episode? If to different people it means different things?
I really feel the medical professionals don't believe me, more than one has said "but he is SO NICE".
I feel like a sponge here, just soaking up what each of you says, and with a lot of gratitude.
Abby, so sorry you are going through all this as we are too.. My DH was on Aricept 10mg and Resperidal, at first they seem to help him, then after a couple of weeks, I started to notice after an hour or so of taking the meds he start to shake and get really agitated and bad rageing, grabbed a knife to harm himself. Dr told me to stop his meds and now he is as calm as can be. Everyone is different, it's a matter of finding what works for him..I'm sure you will get great advice from evryone here..I have.
Abby, My husband started losing his memory at age 50, he passed away on October 12th, at age 60. He would have been 61 on Dec. 13th. Even though he continued losing his memory each year, was not really diagnosed with FTD until 5 years ago after the 2nd P.E.T. Scan. This was after 5 MRI, numerous blood test, CT Scans, Lumbar Puncture, numerous EEG's & 2 P.E.T. Scans and 4 Neurologist. Previously, they all thought he was too young. I was told FTD, is one of the hardest dementia's to diagnose. My husband's maternal grandmother & mother both passed away from dementia, they were both much older than when he started losing his memory.
You mentioned you didn't really know what rage meant to different people. I can tell you what it meant to me, if you really want to know.
abby--do you have a Neuro-Psychiatrist or Geratrician--someone specializing in Dementia Treatments? That could be very valuable to you as you care for your Hubby. A Dr. specializing in these diseases is not going to treat your reports of behavior with phrases like, "But he'so nice."In fact the really good ones are going to look to you for reports of how things are going, and will even express concern for how you're doing. They will feel as ours does, that you are the most valuable tool they have for treating your DH, because you are able to give them the 24/7/365 insight they can't get in an Office Appointment. Even in mid-Stage 6 my DH can snow medical persons, even after they've been told he has VaD. That's why I let the ER Nurse chase him, after she expressed doubts about the DX, and persisted in asking him questions about his meds. He'd taken a fall and banged up his ribs and the soft area between the ribs and hip on the left. He knows he takes meds from cups with different color covers several (4) times a day. He has no clue how many of which kinds are in each cup, nor what each is for.
abby-my husband was in his 50s when he started losing jobs because he was the only one right in the entire company. When he realized his memory was failing he tried those stupid pills advertised in the Sunday magazines. I got him to see a doc "to help his memory". Never would he admit he had a problem. He was put on aricept which made things much worse. By then I was deep into my own research. His psychiatrist piled on the drugs-but nothing worked. He had 3 psych admits which accomplished nothing but to drug him into drooling oblivion. Rages got worse. At that point I asked for seroquel. It did give us a few more years at home. Eventually I placed him. He died at age 70. He was actually considered end stage and on hospice for 4 years.
Thank you so much for your sharing. All these years; all these experiences!
Yes, there are so many docs. A general neurologist, a cognitive specialist neurologist, an academic neurologist, a neuropsychologist, a neuropsychiatrist, and a testing neuropsychologist.
Between the cognitive problems presenting so early- still in his 40's and that he had done well in a career that was cognitively demanding there was much delay in getting the dx. So many tests, I have overheard so many times "what an interesting case"...
It was based on my statements about what I termed "rage episodes" that the lorazepam was rx. The specialist firmly believes the aricept has a calming effect. But two of the above have been not so much dismissive as disbelieving. YES! He can charm. In office/interview situations he does very well. However, during two hospitalizations he was charted as having problems with "impulse control"; trying to pull out iv's.
I go around and around in circles about what is rage? How is it beyond anger and frustration? In my experience the individual expressions of it by H have not been the same. Yet there are components of it that seem to always be present including irrationality, and this just came to me- standing up. Years ago we would sit and argue, rationally argue. But when he goes into one of these outbursts, he always stands up and moves around. I am certainly beyond the point of saying let's just sit down, be calm and talk about this. (Can you imagine?)
abby--I have some experience with rage, although not as intense as FTD behaviors, I believe. (My husband has EOAD.) You asked for the names of some of the meds being used to control rage/anger, etc. He is on: --Namenda (neuro says it helps with agitation) --Zyprexa (antipsychotic) --Citalopram (generic for Celexa, antidepressant; because depression in dementia patients often presents as agitation) --Trazodone (antidepressant used to help insomnia) --Amantadine (actually a Parkinson's med, but helps with agitation in AD) --Cogentin (Amantadine caused torticollis--leaning of head and upper body to one side--this corrects it) --Prazosin--(actually a blood pressure med, but being used in this case because he has an enlarged prostate and retains urine--that causes agitation in dementia patients--a side effect of this med is that it empties the bladder).
This "cocktail" took 5 weeks in a geripsych unit to evolve. You can see that drugs developed for other diseases/conditions are being used; but It has tamed the AD beast who overtook my DH and now he is sweet and compliant. Two aides at his ALF today said he's the best patient in the whole place. I hope it continues!!!!! You seem to have seen an army of docs; is there one who specializes in FTD and is up on the meds? In our area, there is a specialty FTD clinic at Johns Hopkins that also is geared to younger patients.
The first thing that jumped out at me in your comments was "amantadine" which I believe H took for quite some time. I will need to ask the doc about that. That, as well as cogentin, because when stressed H really leans to one side. I did not really notice that while he was taking amantadine, and, sheesh, there was another med-baclofen?- that seemed to help with those issues.
H's dx was changed from FTD to EOAD and I think SS calls it multiple or combination dementia? Believe me, I look at that paperwork as seldom as I can. The general neurologist basically has said that the brain is shrinking so, really, call it what you will because there is comfort treatment but no curative treatment.
My major frustration is that docs as well as the care manager I have retained say AL now, but H resists it. He needs it: I have been to only one place so far and I can tell they can give him a better quality of life than I can.
How was it for you to get your H into AL?
This is actually my greatest frustration and I wonder if I should start a thread about it because I think others here have confronted it? The one (AL) I went to seemed very nice but he would be at least, or about 20 years younger than anyone else there.
Neuro says that as time passes he won't be able to even care, but that time seems to not be any time soon!
abby--my DH was dx at 60, so I have had some of the same concerns as you.
First, a correction--I'm thinking it may have been the Zyprexa that caused the torticollis, not the Amantadine. The Zyprexa dosage was upped and I think that was did it. I was told that it usually happens in young schizophrenics as a result of meds and his neuro had never seen it in someone his age; but my DH is in extremely good physical shape (other than his brain), so I think his body is generally like a much younger man. (I only have a B.A., but sometimes feel like I'm working on a pharmacy or medical degree!)
I do see the value in having as accurate a dx as possible, because the meds affect an FTD patient differently than an AD patient. Surely, he must have had brain MRI's/PET scans? I have heard of people with a mixed dementia dx, but I really don't like the statement about what's the difference, it's comfort care only. However, with the number of doc's you have seen, perhaps that's as finite as they can get it.
Re the ALF situation: See if you can find any of my old posts about it. I was really concerned about 2 things, (1) that he is so much younger than the other residents; and more importantly (2)he is physically very strong and was having a lot of agitation/anger. His neuro was pushing me towards placement for a while, but because of my reservations, I didn't listen. Then, after his second geripsych unit stay this year, he was put on the cocktail I described above and two things became apparent--he was docile, and he didn't know whether he was in the hospital or at home. So I took him directly from the hospital to the ALF, and he adjusted beautifully. I posted on another thread yesterday, several aides told me he is the best patient in the ALF. I am finding that rather surreal, because you can tell from the number of meds he's on that he was a real handful previously. But I finally realized that his medication management needs to be done in a professional setting, not at home.
The age difference at the ALF has been no problem. Your husband, though, sounds more alert. I think you would have to put him in for a respite stay first and tell him you're going on a trip, see how he adjusts, then extend the stay by telling him something else, i.e. you're having the house painted or construction done, etc. I called the geripsych unit at the hospital a hotel the first time I took my husband in, and he accepted it.
i'll throw a wrench into the mix (torticollis)as my DH also leans toward the left here for sometime.it comes and goes on its own. and hes on no meds but blood pressure, nothing for psychosis or AD. it seems to happen when the body muscles become affected or compromised. i do think some meds can make the problem worse but the hospice dr says she sees it alot in dementia.
Marilyin...You have so much experience in this "trip", I wonder if you know the answer to this: Yesterday, I took a good look at my dh's neuro's business card and it gives his following qualifications.
Board Certified Neurologist Board Certified Pain Medicine California Qualified Medical Evaluator.......Do you know what this is??
MarilynMD, I have a question. You say you took your DH directly from the hospital to the ALF. Every ALF I have checked you have to choose a room and furnish it with bed, linens etc. a chair, TV and just anything they might need. Are there different types of ALFs and have I been checking the wrong ones? Plus you have to pay to get on the list...one was $2,000.00 another $3,000.00.
Judith--I really have no idea what that means--maybe something legal, like he can be called into court cases to testify in CA? Have you tried Googling it?
Jean21--I had already made arrangements with the ALF in advance (before he was released from the hospital). This ALF provides furniture, as most do in this area; however, if I had wanted to bring something like a chair in from home, they would have accommodated me. I just did decorating--brought in family pictures, some decorative items (they have a built-in shelf up high on the wall that families decorate and a shadowbox outside of each room) and of course, his clothing and grooming items. They also allow families to provide pullups, wipes, medications, etc., or they will be glad to provide them for a markup! The fee of $2,000 to $3,000 is usually called something like "entrance fee" etc., in this area and is generally required. My experience is only with corporate-owned ALF's--the one my husband is in is owned by Manor Care. Locally-owned facilities may be different.
My husband was a direct transfer from a psych unit to a dementia ALF. They provided the furniture and I brought all the goodies from home before he arrived. I put lots of his pictures on the wall and brought a favorite quilt. My husband would never have entered the facility if I had brought him there. I never got my entrance fee back from a facility my husband "escaped" from after being there for only three weeks. Think very carefully about security issues before you select. With hospice in place my husband was able to stay to the end.
The SLF I have looked at has a lock-down memory care wing. They require a $2,000 entrance fee. The gal told me it was because of all the paper work.
All meds. have to be bister packed. I don't know if the local VA center where my dh gets his meds from right now can do the bister packs. First time I had ever seen meds like that.
I have seen (state) Qualified Medical Evaluator twice. Once was on the card of the neuropsychiatrist, and the other was on a certificate at the office of a care manager I consulted.
MarilynninMD,
Yes, I think because H has had such atypical reactions to mere interest in a specific dx has waned.
I have only visited one AlF so far. It is corporate owned. There is no buy-in. You rent a specific apartment, called that because each has a private bath and kitchenette. They supply a bed, nightstand and bookcase.
The logistics of getting him there seem impossible now. (Big sigh.)
One of the ALFs I checked had a $3,000.00 sign up fee and it was stated "NON REFUNDABLE". I would have had to buy all the furniture, linens, TV, Coffee Pot and cups. They had different rooms so the price depended on the one you chose. If I remember correctly the cheapest was $95.00 a day. Anything they did was an extra $2.95 for each item. That was if they dispensed the meds, help shave or shower or anything they did for the LO. I decided it would cost too much, especially if DH never went there. Right now I have in home help for 3 or 4 hours a week and will be sending the paperwork for LTC Insurance to pay. I might as well use it for this because if AH never goes in a Nursing Home we won't get the money back.
JudithKB--in my state, the pharmacies who supply meds to the facilities blister pack them. I think there is less room for error that way. My husband's ALF lets me supply the meds in regular bottles--our health insurance plan is much more reasonable than their pharmacy. However, I have to keep tabs on how much medication is left (actually, not a bad idea--I can see if they are dispensing them properly).