I ran off a copy of that listing of FTD symptoms that someone put together, to show which occur in which stages. Then I took a pen and went down it, to see if by marking beside each stage I could figure out where my dh might be. Wow! I knew he'd been declining, but being so close to him, I still wonder, since he hasn't been dx, and since like so many still goes in and out of normal quite well. To refresh memories, I tried to get him dx twice with a neurologist. Initially the dr. dx him with MCI after running through FTD/Picks and deciding on that. A year later I took dh back, because his behavior had gotten more nasty. The doctor blew me off, even though I had provided him with an update of what had been going on with him. He told dh that he was just having trouble ageing. But it was a blessing in disquise, this not dx him, because when he went on Seroquel during in about Oct., not only did that med help him behave, but our insurance covers it. So I've decided no dx, but to continue to let the PCP handle his total care, w/o the neurologist, in order to keep the insurance covering the Seroquel.
So, about the list of symptoms. I was amazed. He's a solid Stage 3, and probably a solid Stage 4, with some marks beside the symptoms in Stage 5, and a couple of marks in Stage 6. Again, this listing is for FTD symptoms. I dated this initial marking, and will go back into the list to mark it again at Christmas time, to see how he's changed for the year. It really made it easier for me to grasp that he in fact probably does has FTD, and is declining/progressing, even though no dx.
I've gone through the stages many times. I'm always surprised when people can't figure out which stage their LO is in. I'd like to know which symptoms of stage 4, for example, a stage 6 patient did NOT have.
My husband is in stage 6 with vascular dementia. He has ALL of the stage 5 symptoms. I'm not aware of any stage 4 symptoms he doesn't have. There are loads of stage 6 symptoms he doesn't have at this time. And there are loads of stage 6 symptoms other caregivers here report their LOs having that he does not have. Doesn't matter because once he got a stage 6 symptom, that was where he was.
To go along with what Starling said. When Dxd my DH had all stage 4 symptoms and was showing beginnings of stage 5--some symptoms, but also at first they'dcome and go. He has Vascular dementia now well into stage 6, but all through I've seen symptoms show up and fade away, only to reppear, each time stronger and lasting lopnger. I think this happens as the vascular system fails in a specific area in increments. Maybe like microscopic TIAs interrupting supply often enough, then long enough to trigger the symptom and finally install. He's not got all the stage 6 symptoms yet, but I am beginning to pick up hints that 7 is coming. Not very happy about that.
Is there anyone who has had any experience with what is called silent strokes? And how might this be apart of vascular dementia. My DH had not violent symptoms we hear about with Vascular dementia but has had a TIA and has had heart surgery and has stents in his legs and one renal artery. We were told he has AD. Perhaps it is mixed and if so, how has this been treated or diagnosed? I am still wondering if his DX is correct. He is only onExelon, the namenda made him dizzy and had to be stopped. I do see him memory getting worse. He is not, thank god having bathroom problems..he reads, watches tv and it generally pleasant.Sounds great on the phone so folks who are not aware of his condition mistake it, that he is NOT alright. I hear the errors of conversation like saying we have had no rain when in fact we have had tons of it.
Mimi--My DH has VaD. He has had several TIAs that I know of, and I am positive several more extremely tiny ones. Only clue is my observation of an odd symptom or two that show up and then fade away quickly, only to reappear another time. Things like a temporary disconnect--just stops and stares for a few seconds, or slight garbling of speech; maybe a temportary unsteadiness when walking. He has scars from 2 significant strokes which no one in his family has a clue of when they happened. Awareness of a symptom one of them would cause was not even noticed until about 2 years after we married. One of my sisters' husband has had 4 strokes. In their support group they have learned that strokes can happen right in front of a Dr. and not be seen. Two other people I know of had stroke damage that went undiagnosed until autopsy. One had been treated, including surgery, for visual problems---Strokes affected the Optic nerve. The other's only complaint was that some of the time her dominant hand just wouldn't work right, affecting fine motor control,--signing her name or doing handcrafts. Again strokes. My DH has multiple meds for psyh issues, but has never taken Exelon, or Namenda, and the Aricept his original Psych Dr. gave him for 3 months, only aggravated the confusion and aggitation. That Dr. said to try it--if it worked he had Alz, if not he didn't. I don't know if this helps but it's what I'm dealing with.
Hello everyone...I've posted before under main heading of AD. DO recently diagnosed with FTD and now I have new questions. Where do you find a list for stages of FTD? Also...We have a Dr. appt in am. What are some of the meds you are seeing for agitation? I'm frequently able to read posts, but have'nt had time for writing. As some of you have experienced, I'm dealing with alot of acting out. It always revolves around bill paying (which he can't do, but insists he can) Second problem is taking a trip to visit my mom. (DO insists he can stay home alone and manage his meds. He puts up a loud and continuous racket) Of course he can't manage his meds, he doesn't even remember taking them. Help...I'm not having much success distracting or "reasoning" with him. I'd appreciate suggestions....... and prayers
my husband was diagnosed with FTD. For his agitation he was originally prescribed respiradal, but that made it worse. He was then placed on seroquel and it has helped greatly. He is on 25mg of seroquel in the morning and the same dose at night. It doesn't make him at all dopey--just slowed down his constant pacing, agitation to manageable amounts. Just like AD, FTD doesn't follow a specific pattern, but I think I posted a general listing a while ago. I'll look for it and bring it up for you.
jean-my husband also has FTD. You cannot reason with them. Even distraction doesn't work as they seem to remember what is important only to themselves in the mid stages. Seroquel worked well for a while. My husband has been at the so called end stage for three years. If there is a pattern I haven't found it.
My husband has FTD also. He has sudden anger and occasional rages (only with me, of course, except six months ago, before he was put on Seroquel, when he really acted out with his neurologist and she suddenly saw what I had been going through at that time. The Seroquel has helped immensely. It doesn't stop these behaviors but it has limited them and I am mostly able to live with them. He does fixate on something and won't stop until I help him with it or look at what he wants me to look at, even though I'm doing something important at the time. For example, yesterday he got very angry because I asked him not to do something he wanted to do. Stomped up into his room and I didn't see him for the rest of the day. Today he got mad because I had just gotten home from the doctor where I had a cortisone injection in my knee and was very hungry. He wanted me to stop and listen to him read something in the paper (you cannot even begin to imagine what I feel like inside when he begins to read to me the minute I walk into where is reading (usually at the kitchen table). He even reads me grocery ads!
Tonight he got angry when he came into my room, where I had just dumped a whole glass of water on my nightstand, wetting everything on it, on the floor and bed, and asked if I wanted to order the magazine Country Living! I told him no. "But, it's only $9," he says. I tell him I don't want it, I have so many magazines I haven't had time to read them and they're still coming in. "I don't know why you don't want it, it's only $9..... " And I'm still wiping up the water. I think about all the things I have to get done in the coming weeks, all by myself, and I just want to scream. This, I guess, is what FTD is. Most days I have patience, today I didn't. I don't feel guilty yet, but I will later.
Good morning all....Thanks so much for your input. I'm also a nurse, bluedaze, but a retired one. Somehow it doesn't help much when it's your spouse! I feel totally without skills in this situation. Having to talk to the doc about his behavior, in front of him, will have repurcussions for the whole day. DO feels he has a "memory problem" and everything else is my imagination.
Denial is a big part of FTD. Seroquel seems to be the med of choice, it was a great one for "us" also Paxil for the depression.
Association for Frontotemporal Dementias: Opening the gateway ... FTD, also called frontotemporal lobar degeneration (FTLD), is a cluster of progressive diseases that affect the regions of the brain that control ...
Back from our doctor's appt. No progress on controlling the behavior issues with a med. Her (the doctor's) concern is for Jim's physical health right now. He has an idiopathic anemia that is not improving with iron supplements. They can't find a cause, and are thinking that it comes from his long term antibiotic treatment for osteomylitis. He developed MRSA in the surgical site after his last hip replacement in 1998. She says his medications are so many that she hesitates to add one more to the stew. She plans on staying in touch with me and reserving judgement on the treatment of the behavior issues for now.
Jim was pleasant and calm throughout the day.....always makes me wonder why the control is in place sometimes and not other times. Well I don't have the answer to that, so I gratefully accept the unexpected calmness of the day.
Thanks to all of you for your concern and information.
jean-it's strange-my FTD husband also had an unexplained anemia that did not respond to treatment. Also had an unexplained elevated sed rate. Inflammatory disease can cause heart problems-why not dementia. Just a thought.
Bluedaze, that's amazing... He also has unexplained nausea/vomiting. All ordinary testing proved negative. Initially thought it was motion sickness, but he has had problems without traveling. They plan on using Pro Crit for the anemia. Waiting for "insurance" approval.
Kind of strange but my DH also has unexplained anemia. He does not have FTD, he has vascular lesions in the subcortical white matter of his brain all in the frontal lobe (so he acts like FTD!). He also has none of the risk factors for vascular disease, normal blood pressure and cholesterol so the big question is what is causing the damage to these tiny blood vessels.
A reason that it can sometimes be tricky to pinpoint stage, on the 7 level scale, is that the examples given in the level descriptions are very memory-based and not so much function-based. Here, for example, is the first item listed for Stage 5: "Inability to recall personal address, date of birth, their own telephone number or where they went to school or college." Well, my husband is perfectly able to tell you all those things. But he cannot reliably sit squarely in a chair--he may miss, for example. He cannot figure out how to open the mailbox sometimes, or--when I open the driver's door to our car (with him watching,) rather than go to the passenger side and open his door, he might try to open the door of the car beside ours. He falls over the dog, overfills his coffee, and cannot figure out how to stand a glass up on the shelf.
But it's very clear to me that the description of Stage 4 does not do justice to his degree of malfunction. So, I know he's worse than Stage 4. Hence, I have to call him a 5, even though the particular areas in which his brain is failing--why he can't do things--has more to do with mechanical failure, or spatial perception, than memory failure.
As far as I know, he may reach a stage where he still knows where he went to college, but can't get up without falling on his head because he can't tell the difference between the floor and the ceiling.
This is why you kind of have to take a rough guess at stage. How does your spouse's particular area of malfunction seem to compare with the degree of memory impairment described in the Stages?
My DH cannot tell you what day or month or year that it is. Does not know his address, telephone number or what city he is living in. Does not know his children's names or mine sometimes but he knows he went to the University of Alabama and he will tell you he is an educated man. He can still read but does not understand what he is reading. Stage?????? Who knows.....but he still knows where he went to school...LOL
That is why I think using just mild, moderate and severe are better. My husband was moved to moderate even though he can still tell you his birthday, SS#, address, county he lives in but he can't remember the day, month or year unless he practices. He would be lost without his watch that has the date and day on it.
FTD is a monster of its own..my husband is very much as Emily described..but..it is the spatial things that get him...1/3 of his food ends in his lap or the floor, misses chairs on a regular basis, uses his hands to "walk" around the walls, kitchen, furniture...and leans into everything which causes the teeter totter falling to happen regularly...but he surely knows what, where, and sometimes when! Very hard to watch.
My husband had a severe brain injury in 1981, so, since then he has had memory and cognitive problems. In 2004, or there about. my children and I felt everything was getting worse. He had a frontal brain injury, so his symptoms mimicked FTD for a long time. Right now he can tell you all our names, schools he went to, but not the day, date or season. He has occasional accidents of urine, he frequently dresses inappropriately, he has recently had episodes of garbled speech. His rages can be very frightening, but only happens with me. He reads the paper, but repeats reading articles over and over. He eats well, but is very slow and unsure. He loses weight regularly. He has gotten lost twice in familiar areas. So much more...I suppose mild ,moderate and severe fills the bill, as so many of you have suggested.
Believe it or not, this is the very first blog I have ever read or posted about anything. Actually, I am, (was) of the belief that blogs are by nature, pathetic. People communicating with strangers about personal matters. Do these people not have any friends? Call me desperate, this morning I am. Here is my story. My husband is 13 years my senior, diagnosed with early onset AD & Vascular Dementia? I am an RN and thought I was well ahead of the game on education for this disease. Given the fact that his mother had same DX & lived in our home form 13 long months, I thought I was going to able to handle this, but every morning I wake up and feel depleted of energy, feelings (at least all positive feelings), frustrated and angry. And of all the things that I have dealt with so far, it seems to be the little things that are getting to me. For the last 3 nights I wake up, freezing. My husband is snug with all the blankets and all the pillows. He has NO history of being a blanket hog, ever. I got up in the night to get a blanket and my husband gets angry at me for waking him up. I crawled back into bed and cried myself to sleep. I believe he is in stage 5. I feel alone and helpless right now.
mamess we are all friends here ......we are just geographically challenged so we meet here instead of at Joan's house :) So I am thinking two sets of blankets on the bed, Yes ??? My husband has same diagnose and his sleep and mine are essential to living and survival. What level of reason does he have? It kills me you cried yourself to sleep, I am sorry. Creative bed making is the first order of business !!!
mamess-several of us are RNs and were still unprepared for dealing with this @#&^ disease. Knowing others are sharing the same misery makes us feel not so alone. We are in uncharted territory and are writing our own book.
Thank you Terry54 & bluedaze for your comments. Since writing that, I have already shifted to, what was I thinking? There are so many others in far worse situations than I am in. Yes, I will just be proactive and start with my separate blanket. I was so hurt in the moment of really? ! AD even affects this? Level of reasoning...his neuropsych testing showed severe impairment 1.5 years ago. He is still driving (short distance to grocer store)...our next huge battle. Reasoning on any level sucks. He tries to cover, gets very frustrated goes into quick rages over the tiniest of problems. The incident is NEVER congruent with his reaction. I am constantly putting out fires. I have been going to AD seminars in our area for caregivers and even had the fortune of seeing Teepah Snow. OMG she is incredible speaker and expert on AD. However, my husband gets paranoid when I don't come straight home from work and support groups are off the list right now.
Weejun, your post was not showing when I responded just now. Thank you, too. You are right. I think I have landed in a soft spot, surrounded by friends.
Welcome to the family. We hope you can receive some help from this group. Ask any question and someone has already been there and done that and bought the T Shirt. I know that I could not survive without my friends here.
Glad you found us and I know we can be of help. There isn't anything we haven't heard.
Re the hogging of blankets....I found dh to be cold all the time so like the family says, make up your side of the bed to suit yourself. There are times I wear winter pj's until July and start up again in Sept. I have also been known to wear socks to bed incase my covers are "stolen".
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD- now called YOUNG onset). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section on the top left of the home page. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I, too, was a professional - a speech/language therapist who dealt almost exclusively with young teens with language learning disorders and ADHD. In my job, I handled everything from impulsiveness, slow processing, poor processing and understanding of language, behavior disorders, memory disorders. You name it, I handled it. The only thing my professional job did for me in this personal AD battle was enable me to recognize my husband's problems long before any doctor did. It did NOTHING to prepare me for the emotional devastation the disease had on my wonderful marriage. Many of us on this board have been (or still are) nurses, social workers, therapists - its a whole different ball game when you have to deal with the problems 24/7 on an emotional level.
Mamess,welcome sorry you had to join our club. But since you are in the same caregive hell as the rest of us,it is good to have FRIENDS that do not judge you,when you go on and on about a problem,or when you whine about self pity-it is ok believe me- they have put up with me for a while and have not thrown me off the group yet.(I have certainly done my share of complaining) So when you get tired and angry and just want to RUN away,just come here and share-someone will make you feel a little better. Hugs and prayers to you
mamess, Welcome to our site that Joan so graciously provides for us to be together. Someone here has gone ahead of you and will share their experiences, and hold our hands through the scary parts of AD.
welcome mamess. its a great group of folks who can offer a shoulder to cryon or hands to hold during times of need. there is alot of info on previous topics if you care to do a search. divvi
Good morning to all my new friends! Our 'home' has not been having a good week so far. My mom and I went to a seminar Monday evening with 2 attorneys talking about ALZ/Dementia-related legal issues. This is part of a series we have been attending. My husband was angry when I got home. My daughter said the next day my husband called our local ALZ agency and 'chewed them out!" Told them that his wife has been going to thier meetings and coming home and not telling him anything. He demanded to know when HIS MEETING WAS SCHEDULED! My daughter said it was so bad, the lady finally had to hang up on him as she was late for a meeting. Since then, he has been mean to everyone. Making huge issues of the silliest things. He is not bad enough to put into a nursing home. Has anyone watche the TV series Raising Hope? I just started watching it and it is pretty funny. My life is not like that, though. But If anyone needs to laugh, check it out. The grandma (Clorus Leechman sp?) has ALZ.
Oh, and Joang...you are an angel! Your blog and website are so helpful and information/resource-packed, I don't know where to begin. And thank you for your comments. No one else could possibly understand the problems we face every waking minute, except those of us that are living it! Sometimes something happens and I would think to myself, "Well, can't share that one with anyone!" Now I can!
This is a place where we can talk about anything. Thank goodness, so often things happen and I think I am the only one who has this going on. Check in here and see that I am not alone :)