Sometimes, in fact almost daily, I doubt my perceptions about dh and wonder if his signs of what I feel are FTD (undiagnosed) are really that dementia, or nothing more than his being his usual difficult personality. If I stand back objectively, I think he's definitely FTD. There have been many, many odd, ugly behaviors through the years that point that way. I did try to get him dx, twice in one year, but the neuro the second time said he's just having trouble ageing. The first try, the same neuro diagnosed him with FTD first, then Picks, then MCI, all in the same couple of visits. An MRI showed nothing. DH will be 80 years old in a few days. We've been married 21 years, second marriage for both. Finally, he got so off the wall that I asked his PCP to put him on Seroquel. That has worked wonders, even though right under the surface the same nasty behaviors simmer.
How do you know in your heart that in fact, your perceptions are right on, and it really is a dementia, even though his lucidity usually is there. He's lucid, and then he does something weird that points toward the FTD. It's his lucid moments that make me questions my perceptions.
remember that dementia is a symptom, not a specific disease. You may never know exactly the diagnosis until death if he refuses or the doctor can not nail it down. Of course remember when we get the diagnosis of Alzheimer's the actual way it is put is 'dementia of the Alzheimer's type' since, as of yet, they can not diagnosis it 100% until death. As for FTD, I would just keep aware and go with dementia. I can see where you are questioning it too. As people age, it is not uncommon for depression to set in and have personality changes even without dementia.
Just keep 'hanging on' and take it day by day. If you can get him to go, try a different doctor. I am glad the Seroquel is working.
Dear Hanging On, I could have written this also. Except my DH is 56 almost 57. Same thing, I think it is FTD, no diagnosis, nothing in MRI, doctor does not see anything wrong. DH knows that something is wrong but blames it on everything and everyone else. Possibly Depression adds to the behavior. I also question it all the time then he does something that reminds me of the reality.
I struggle a great deal with this. My husband complains that I am determined to see him as worse than he is because I collect examples of things he messed up and bring them up when he says he can still do everything. Luckily the Parkinson's symptoms are undoubtable. And my daughter recently said never again should we let Dad make plans that include any of the rest of us.
One problem is at what level is dementia diagnosed? Supposedly dementia is cognitive changes that affect the person's everyday life. If my husband had been leading a very peaceful retired life, the cognitive changes might not have affected his life two years ago. He is to this day still pretty much able to take care of himself on an everyday basis. But he was a college professor, and so the cognitive changes did affect his everyday life early on. Some doctors saw that (particularly as he was 62 and needed to qualify for disability) while others said "he doesn't have dementia" because he could still talk sensibly.
One thing that is very confusing to me is that my husband has always had Attention Deficit Disorder, with problems with executive function, so the dementia means that his characteristics that were already driving me crazy are just getting worse, but he says he has always been this way. I did find a study recently that said almost 50% of people with Lewy Body Dementia had adult ADHD.
European Journal of Neurology. 2010 May 13. [Epub ahead of print] Previous adult attention-deficit and hyperactivity disorder symptoms and risk of dementia with Lewy bodies: a case-control study. Golimstok A, Rojas JI, Romano M, Zurru MC, Doctorovich D, Cristiano E. Neurology Department, Hospital Italiano Buenos Aires, Argentina.
Abstract Introduction: Previous reports have shown that in Dementia with Lewy body (DLB) and attention-deficit and hyperactivity disorder (ADHD) a hypodopaminergic and noradrenergic substrate seems to play a central role in developing the diseases. We investigated the hypothesis that attention deficit may precede DLB expressed as adult ADHD symptoms long before the clinical onset of dementia.
Results: A total of 109 patients with DLB and 251 patients with ADT were matched by age, sex and year of education with 149 controls. The frequency of preceding ADHD symptoms in DLB cases was 47.8% in ADT 15.2% and 15.1% in the control group. The prevalence of ADHD symptoms in DLB cases was significantly higher compared with the control group (P </= 0.001, OR 5.1 95%CI 2.7-9.6) and also higher when compared with ADT (P </= 0.001, OR 4.9, 95%CI 2.8-8.4).
Conclusion: We found a higher risk of DLB in patients with preceding adult ADHD symptoms. To date, there is no clear explanation for the association found; however, further investigation will widen our understanding about both disorders.
You're so right, Mary. It's the times when dh suddenly does something that yanks me out of my wondering and points out to me that indeed there is something wrong going on. Some on this site have said in the past, "If you think something is wrong, then it is."
Pam, I wonder if that is why we are getting a diagnosis of MCI first now instead of dementia - they are not sure and it really explains the early symptoms just with the name: mild cognitive impairment.
For me its things like questions that I have just answered. He doesn't have a clue that he just asked. Or dazing off when he needs to be doing something-like when working with others on a project. He always is alert and jumps in where needed. now, not as alert. Or on his work time slips spelling words wrong. I am the bad speller in the family. He is the good speller. these are the little things. the big things are the personality and mood changes. Getting really adgated and angry for almost anything. wondering why I didn't talk to him about something important when I did.
Fascinating thread. So frustrating, that uncertainty! I didn't realize so many were suffering from it -- and for so long. Many of us have gone through the first troubling years when you didn't want to see what was happening, but for me and for most this was a relatively short time -- maybe 18 months. I had a friend who kept telling me "You don't know for sure, don't jump to conclusions" and at the same time a son and DIL who were saying "It's for sure -- get him to a doctor and get the meds" For me the thing that should have convinced me was that he could no longer read maps -- although he tried to hide that from me by calling me the map-reader. He had always loved maps and was a much better map-reader than I was. This started in the fall of 2005 but I put it out of my mind. Diagnosis three years later, november 2008. Now stage 5-6. On Exelon since then but I don't think it helped much and Namenda was a total disaster.
Hanging On----from what I've read of FTD I think it is normal, during beginning stages, to wonder/doubt if maybe our observations about our LO's are wrong. That's my experience anyhow. I keep thinking friends will notice and say something but DH can often carry on surface conversation okay----at least for awhile. So then I start to think I'm imagining a problem?? Family members are noticing changes (in DH) but I don't think any of them want to acknowledge (yet) the "elephant in the room" and would rather attribute their concerns as being due to the aging process (rather than labeling it a possible dementia). Because hubby won't admit problems to doctor (probably due to the anosognosia of FTD), and he isn't open to listening to my concerns (for same reason) we have no official diagnosis. Dr has told me that the concerns/observations I am sharing are likely the start of dementia (I think FTD from reading online).
If we can keep to a fairly regular routine on a daily basis and hubby gets lots of rest, he functions better. But sometimes life happens and things are anything but routine. That has been the story of the last month. Lots of extra company, out of town visitors, events etc. Overall he has done okay but then there are moments (and days) when I am reminded that all is not well. Earlier this week our daughter was providing music for an event. I had left earlier to help set up for reception afterwards. Hubby was coming with daughter in second car. I had clearly told him time they needed to arrive . . . that time came and went and no sign of them. Eventually they arrived . . . daughter said she had an awful time getting him out of house . . . he kept saying there was no need to rush . . . plenty of time before it started etc. Looking back he must have registered time of arrival as time to leave home so no wonder they were late!!
Food for reception was catered by a friend of ours. That fact was discussed several times prior to and after the event. DH even mentioned name of friend to me a couple of times. Then yesterday (about 20 minutes after mentioning friend's name again) he told me that another catering firm had provided all the food. No awareness of what he'd said less than half an hour earlier. Comments like that remind me in a very definite way that something is wrong. But in between he can sometimes carry on reasonable conversations. Less ability though to talk things over that involve decision making or are more involved or complex.
Hanging On, Just reading your post brought all those old memories back so vividly. What a terrible time that was and in such a different way than now. Some people say the earliest stages are the most difficult and that's because of the questioning and the yo yo feeling you go through. Sometimes I'd think DH was just faking this whole thing so I'd do everything he didn't want to do and he could live a stress free work free life. And it makes it so much harder when the doctors disagree and your friends and family "don't see anything" or else they are sure they know what it is or isn't. Just the time time when we need love and support the most seems to be the time when we get none and instead are questioned and belittled and......I could vent on and on on this topic. You're not alone. And Emily is so right.
This is all so familiar to me. Everything you people say apply to the things we're going through. Looking back, I believe this has been going on for a long time. When I think of the times we'd be driving somewhere and he'd keep asking me "Which way do I turn?" Or, get in the right lane and he'd go in the left. I'd yell, "I said the right lane!" And, he's say "Why didn't you tell me sooner? I can't change lanes that fast!" Oh, this is just a little bit; there are so many other things I could recount that should have been a warning. All the times when he'd get so angry over very little things. I just thought we were having trouble communicating, that something was changing in our marriage. Now I know better.
And now we have the opposite conversations while I'm driving. Him: Get in the other lane. Me: No, there's a car there. Him: Turn right here. Me: I'm going ... I need to turn left. Aargh.
I woke up last night about 3:30 to let the pups out. DH was awake and very angry with me. He had had a dream that I was being sneaky about financial things again and he couldn't sleep. He yelled for a good half hour, wondering why I have been hiding the bank statement (in the cupboard and he know this), putting bills back on-line a few at a time (he doesn't like receiving or paying bills on line as he thinks this is sneaky and meant to hide things from him; I changed them all back to paper bills two years ago to keep the peace), hiding the mail (we don't get much mail and when we don't get any or when I check it, he thinks I am hiding the mail from him), we are having big problems in our relationship because of all of this sneaky stuff (I told him that I thought things had been going pretty good with us).
This all started yesterday when Verizon sent a text to his phone saying that they had received my payment. As I mentioned before, this cell phone account is in our son's name and we have three lines, this has been the norm for over 5 years. In the recent past DH has wanted us to have our own account with a bill mailed to our house. Again, he thinks I am being sneaky. I pay about the same for three lines as I did for two lines before. son handles all of the plan details and I handle the account on line. DH got his first cell phone from son many years ago (even before I received one) as DH was working out of town with no access to a phone. Son paid the bill for the first year and then I took it over when I got my phone. Anyway, a year ago, Verizon assured me that they would not do any interaction or communication with DH's cell phone number. They put on the account the reason. So, yesterday, he gets a text with the payment information. This is what prompted the dream.
Around 6:00 a.m., he rolled over and cuddled me and was sound asleep. I treated the morning as I usually would and he was quite at first and then acted normal like there wasn't a problem. I'm wondering what tonight and this weekend will bring. Three days off together at home, what a frightful thought. I would have sweared that it was a full moon by the behavior. And don't forget the time we are putting into his parents situation. I think it is all taking a toll on DH.
mary - call verizon and have his phone blocked for text. All our phones are blocked for text messaging. We use to get a text about minutes when we called but we no longer even get that. I refuse to pay for texting or having pictures sent to us. It makes our kids upset at times. He has a camera on his phone and usually once a year, if there are cute pictures, I will have them turn that feature back on for a day, then call and have it turned off. Whomever is the administrator on the account can do it.
Sorry you are continuing to have the bill problem.
You can block texts, but Verizon can still send texts regarding bills, etc. They do not charge for those types of emails. I know because my husband's phone is blocked for everything except calls and he will still receive emails regarding our account.
Hard to think back on those times but the most dramatic of all was the doctor's encouragement of DH to run for public office even when we (me and our daughters who were noticing things) were telling the doctor what we were seeing. I've thought so many times that I was misjudging or wrong about what my gut was clearly warning. Even today...EVEN TODAY..i'm tempted to think.. its not as bad as my gut is telling me. BUT it is dementia. It IS.. I don't know of what variety and I don't know if it even matters. When DH looks straight at me and says..'good to see you, come back when you can'. That makes perfect sense in social terms doesn't? Would anyone argue that he sounds 'just fine'?? If not for this place, I would be a complete maniac.
Mary in Montana, My husband was diagnosed at 54 with Alz (he's now 57) and did things at the beginning that sound a lot like your husband's issues. Nothing ever showed up on the MRI's we did, it was a PET scan (at my request) that showed the possible Alzheimer's areas clear as day. Hang in there, sometimes I know it feels like YOU'RE the one who is losing it it!
I wish we could get a PET scan - then there would be no wondering. I find myself thinking that if we could get a PET scan it would show no AD then they would look for another cause. It was made too easily due to family history. Charlotte - get back to reality!!!
My dh had a stroke on Oct 4, 2010. Showed on MRI, dxed as "small acute stroke." Spent 4 days in hospital. W/i the next 4 days ended up back in the hospital with another stroke, this time called a "Pontine stroke". He also had gout in his right knee when he had this second stroke. Now, he's in a health care unit getting pt. During all of this, he was dxed with "mild dementia." As you can read above, I have long thought he had FTD, but he was not diagnosed.
Sometimes I think my AH is not too bad, then I read threads such as those above, and realise he is too bad ! He can neither read nor write, let alone write or receive texts. He can't get into the car without help or he will try to get into the boot or the back door, he needs help with dressing,has his food cut up and needs a spoon to eat it with. His eyesight is so bad that he just listens to the TV and I really don't know how much he absorbs, as if I ask him something I miss, he never knows the answer. I feel blessed that he is co-operative and lets me make any deciosions that have to be made. I haven't a clue as to which stage he may be in, as his DR. has ever said which one he thinks DH is in. I often wonder if I should think about organising a N/H for him, but when is it approperate to begin to plan such a move ? Hugs to all carers
Sylvia, people who are more expert than I am might chime in here, but I would guess that your dh is somewhere in stage 6. He sounds a little worse off than my dh in some respects and I judge that my dh is at 6D, considering his urinary incontinence. Mine is cooperative as well and does not get into any trouble except for trying to cycle or walk away a lot last summer. The escapist behavior has settled down now but I still keep doors locked. Is your dh still continent? (you have probably mentioned this on another thread, sorry). There are several threads on "when is it time for nh" but the consensus here on the boards seems to be that it's time for an nh when the caregiver can no longer cope or can no longer give the care that is needed. For me it will be sooner because the nh I want has a waiting list and I don't want to take a chance on waiting till I'm not ABLE to cope and then having to wait several months. I have a meeting coming up next week. I'm certain that it will be within the year. Bottom line; Everyone is different. For you (like for me) it probably makes a difference that he is cooperative, that makes it so much easier to cope.