I first noticed something was not normal with DH in February 2009. At first it was just memory but since then: cognition problems - confused / unable to process, errors handling finances, errors on the job, problems with language processing, attention issues, spatial issues, personality changes. Only the closest family & friends have noticed the problems. His current condition can be summed up with a quote from my 15 year old in mid-April, “I think Daddy is getting worse. I used to notice something about every week – now it’s every day.”
Although he will not acknowledge any deficits, he has developed coping mechanisms (emails himself immediately from his I-Phone anytime I remind him of something, etc.). He has good days and bad days, both of which seem to come in stretches of 4-7 days each. He can seem perfectly normal, and I will start questioning myself – maybe it IS just stress… and then something will happen and it’s like a punch to the gut.
This time last year I spoke to family doctor. He did the mini-mental, said husband passed fine (of course when DH related the testing – he said he ran into problems but was given repeated attempts to get answers correct). Doctor sent DH for a CAT scan – everything fine. As problems continued, I decided to just point them out as they occurred so DH would eventually admit problems and go for more testing. BAD IDEA! He became defensive, paranoid, and mean. I decided for the sake of our marriage & my son, we would be better off just floating down the river of denial, and quietly documenting.
Fast forward one year. I summarized problems with glaring examples and gave to family physician in writing. After reading he said husband definitely needed to see a neurologist. Said he is young, so it might be something treatable, but he wasn’t holding out much hope. I asked if HE would be the bad guy & leave me out of it as much as possible. I have to live with DH and don’t want him upset with me. He agreed, though said my husband would probably come in all charming, and being the good salesman that he is tell the doctor there was nothing wrong. I suggested let’s focus on some physical issues like hand tremors and “hot spots on head” DH has complained about & use those for the referral.
DH returns from his physical; he is furious. There is nothing wrong with him. I am the neurotic one, keeping lists of everything he does that’s wrong, denies half the issues on the list, attempts to explain away others – and, mind you, this was a summary list. BTW, thank you family physician for throwing me under the bus! He did however have a referral to a neurologist, but says he doesn’t need it because he passed mini-mental test with flying colors and doctor said he definitely does not have AZ.
I tried to focus him on undeniable incidents. I reminded him of a time in the car when he was driving my son’s friend home. He said he remembers – the boy told him the turn was way down the road, and then he almost missed the turn, but he made it in time. I pointed out THAT is the problem, he was missing the facts that on approaching the turn, the boy warned that the turn was coming, when DH did not slow, I repeated the warning, when DH again did not respond I repeated the warning louder, and it was not until I screamed at him, that he snapped back & made the turn at the last second. The boy, later asked my son, “Dude what the f*** is wrong with your dad?!” That was the last time I let him drive the children.
I tried to make him understand that he doesn’t recognize the problems because he’s not THERE when they’re happening. He doesn’t remember what he doesn’t remember. It ended with me in tears, trying to explain that I do not care about toothpaste all over the bathroom, I care about HIM. That I love him, and want us to figure out what is going on so that we can fix it. Whether that means he needs to retire early, or needs to take some meds or whatever, but that he has to see a neurologist so we can figure this out. DH believes there is nothing to figure out.
Tough situation. Does he have any close friends whose help you could enlist? Would he be willing to go to a neurologist just for the hand tremors? Does he yell and hit in his sleep--that plus hand tremors might suggest the Parkinson's disease dementia, also known as Lewy Body Dementia. That is what my husband has and while he has been pretty cooperative about not denying the cognitive stuff all the time, he tends to see his problem as Parkinson's disease and physical problems, not cognitive issues. Once he got used to the idea my husband was actually eager to get disability retirement because it had gotten so hard for him to get his work done. And to get disability retirement he had to have a diagnosis and admit cognitive problems.
My kids are 17 and 19 but they are both away at school, which makes it a little easier. I'll be thinking of you.
I would suggest you find a Memory Disorders Clinic in your area - not just any neurologist - a clinic that specializes in Memory Disorders - you can find one by logging onto my home page - www.thealzheimerspouse.com, and scrolling down on the left side until you come to that box.
Call them and tell them what is going on, and ask for a consultation WITH YOU, since he will not go. Bring the entire list of your concerns with dates and as much specificity as you can. The "too young" excuse your doctor gave is not going to fly - we all know about EOAD, which you can also mention to them at the Memory Disorders Clinic.
They may have suggestions as to how to get your husband in for testing. They might be able to work with your family physician to get your husband in for testing - maybe they can educate him about AD and EOAD.
Everything you are describing in relation to your husband's behavior and problems (except the denial) are what I went through with my husband in the beginning.
Interestingly, after I told our son (who lives in CA, and we only get to see once a year) the diagnosis, it was as if a light bulb went on. He said, "OKAY, now THAT explains everything." Up until then, he thought something was weird with his father (That particular year, we saw him 3 times), and he definitely thought I had gone over the bend with my controlling. He couldn't understand why I kept repeating and rephrasing everything I said to Sid. Once he heard the diagnosis, everything fell into place for him.
He really doesn't have any close friends. I'm his best friend. Sadly, I think he is alienating many in our community, because he has become so intense, and lost his sense of humor. Everything is a battle to the death...
I may try his brother again, he helped me get him in for the CAT scan last year.
I don't think it's Parkinson's; he said that he has always had the hand tremors (news to me), but has complained that they have never been this bad. I've researched the daylights out of his symptoms and the possible explanations. It seems like EOAD to me - I sure hope I'm wrong...
He is a big worrier, so I am now hoping that he will worry himself to death over this and schedule an appointment with the neurologist. If not, I guess we will just keep on floating, floating, floating down that River of Denial. And I will have to find some way to stop worrying.
Thanks. The family physician DID give him a referral to a local neurologist who is affiliated with (but not housed in) Georgetown U. Memory Disorders Program. I had pre-selected her, thinking she'd have the experience, but I could avoid my husband walking into an office with a big shiny sign saying "Memory Disorders."
Sadly, the referral does me no good - if he won't make the call.
mary - the brother sounds like a good bet. How about your son? How does he feel about it and the effect on his relationship with his dad?
How is work going? Have they said anything?
As for passing the MMSE - Joan's hb passes and he definitely has AD. It all depends on the area of the brain affected. If he went for the 3 hour or 2 days neuropsych testing he would not pass.
Give your hb credit for emailing himself what you said. I have tried and tried to get my hb to make notes to himself but he refuses - says he wants to challenge his memory or something like that.
His work is affected. I am able to gather this through our lunch conversations (we lunch together 3 times a week). I know he is making mistakes, but he is a Vice President so he has lots of people under him who can, and probably are covering for him. (The President is fairly checked out with his own family problems.) He related one conversation that was very telling. Discussing a problem with a worker, she insisted he already knew about the problem – DH replied, “No, I didn’t know about this and I wish people would stop telling me I know things that I don’t know.” His job stress is overwhelming him; he has come up from his office in the middle of the day & said, “Things aren’t going well at work – I’m going to lie down.” He lies in bed until 9:30 am most days. Now, I admit I would not last a day in his job, with all the stress. But he has always thrived on the problems, and being able to resolve them.
I am glad he is coping with his I-Phone reminders, etc. I wish his I-Phone could solve all his problems (heck, it does everything else!). But it’s not just memory. Sometimes it’s like his brain will only go so far. We forgot to make a deposit at the bank one day, and he was very upset because it was almost 2:00 and “Now it’s too late.” When I told him I could take it, he insisted I could not, I’d missed it for today. When I pointed out the drive thru was still open, he paused, looked totally confused, and hesitantly said, “I think they stopped doing that.” We go to the bank often; he has always known the drive thru is open until evening. But in his head – it is almost 2:00 – the bank closes at 2:00 – and then he just can’t make the next connection which is “oh well, I’ll go to the drive thru window.” He's had lots of situations like this, where I can see a cognition/ processing deficit.
Mary22033, This sounds soooo familiar... I went through some of the things you're going through with your husband. Mine has been diagnosed for the past two years but still won't admit he has a problem, but I think he just won't admit it to me. His daughters, their father and I went to see the PCP. They told his doctor that their dad wasn't acting like their dad. The primary care doctor wasn't convinced there was anything neurologically wrong with DH, but when the girls were adamant about his problems he gave them a referral to a neurologic psychologist who administered the day-long testing. It was after that when we knew for sure he had dementia. If your son is old enough, maybe he can convince his dad that something is wrong and he's worried about him. My husband was so adamant he did not have dementia that when we saw a neurologist after the testing I didn't go along, his daughters went with him, because he was so angry with me. He blamed me for everything. It was a nightmare. Hopefully, your children or his brother can convince him to go for the testing.
Charlotte: I understand that you have a huge problem and wish I could help you with it. But, I can wish you all the best and tell you that there are some people here who can help you. Also, we are all your friends.
Mary, I fight the same kinds of issues. DH says he is fine, perfectly fine, not problem with shortness of breath, no physical issues at all...he is in perfect health. No problem with his memory. He will ask 6 times what we are having for dinner..or at the doctor's will deny anything and then the doctors will say.." well I am going to let you two fight it out"..what the hell is this when they KNOW he has AD! I sit there and wonder why I am there at all. Good god I am trying to get things on an even keel with regard to his other medical issues ( say hearing..needs an audiology test) or to use the inhaler for COPD..It is bad enough not to have a great deal of help around the house but when it comes to the medical issues and the doctors treat you, the caregiver like you are the idiot in the room it is beyond insulting. They don't want to deal with this either.
Joan, Just last year I had a similar incident with regard to one of the kids not getting it. The youngest was out for DHs birthday. While she was visiting, DH asked me a question, I was in the other room but close enough for him to hear my answer. I answered his question 3 times in less than 5 minutes. I finally got peeved and I guess my answer was kind of sharp. then step daughter comes around and says " I won't have you talking to MY dad like that"..like she has been around him for 33 years..NOT. she was down right nasty, not normal for her either. I had no dx yet..but I was repeating things over and over and over..anymore I just say forget it it isn't important or I am just talking to myself to keep on track..just about anything to get out of repeating over and over and over. And yes the kid thought I was a control freak too...How was I to keep him on schedule. Don't you just love it when people who do not deal with this have all the answers?/Sarc At least they are getting it now...thank heavens... Odd thing is the friends who don't will say something stupid like " you have to put your foot down and make him do this or that..." or "you have to put your foot down and demand he does....." Anymore it is rolley eyes.
Mary, your situation is incredibly similar to what I went through with my wife more than a year ago. I also kept logs, but I shared them with ehr before each doctor visit. When ready to print out copies to the docs, she'd always disagree with many of my entries as I noted one new symptom after another. She'd get very upset saying that this entry wasn't true, that entry wasn't true, etc. and asked me to delete those notations. Initially I did delete those observations that really upset her ... and rephrased others ... until one day when I refused to change what I had written. Confronting my wife tearfully, I explained that my log entries were accurate whether she admitted that to herself or not. I told her that I loved her too much to change what I had written ... that I needed the docs to know exactly what was happening because her symptoms were getting worse and I wanted them to be aware so they could treat her properly. That worked for us. Unfortunately, at that point she was still being misdiagnosed by the neurologist (anxiety, then stress, then depression) but I was able to convince her to get a 2nd opinion and we went from the neurologist who was misdiagnosing her to a psychiatrist who specialized in memory disorders. (He was also affiliated with an ADRC ... Alzheimer's Disease Research Center ... but she didn't know that at the time!) Maybe such a confrontation would work for you. It's not easy ... I know. Good luck. (My wife was diagnosed with EOAD withing 2 months of getting that 2nd opinion.)
Mary - your initial note described my situation exactly and here is what I have learned.
You can not and will not convince him, you will become the bad guy and take yourself down in the process. His rage can escalate to a point that it is unsafe for you if you continue to be the "bad guy". It can also reach the point that it is unsafe for your son.
What you see and believe is real. Regardless of what the doctor says. They don't live with them 24/7 and they don't see it. Many of our spouses have the uncanny ability to sit in the doctors office and appear totally normal. You can't change that either but it will change itself eventually.
Mine can still ace the MMSE and as well as do acceptable on most neuropsych tests. He is/was a very bright man and if your spouses damage is heavily frontal lobe (as mine is), the IQ remains intact. Mine will lie (confabulate) to fill in the blanks of what doesn't make sense to him and the doctors mostly fall for his stories.
From educating yourself on these boards and other places you know how this is going to progress. Go through the scenarios and plan what you can do now to protect yourself and your son financially and physically. Mine was easy to fool so I closed the home equity credit line on our house, switched the credit card in his wallet from a $25000 limit card to a $2500 limit card, bought him long term care insurance, etc. His email passwords were all the same and easy for me to figure out so, although ethics can be questioned here, I could keep track of his email and find out when things were starting to go south at work and where he was spending money. You can't afford to be blindsided here.
You are already starting the steps, I can tell from your note since he no longer drives the kids. Those are exactly the type of steps you need to take. Try to avoid apologies and arguments, just take the steps. If he as the ability to retire early vs being fired for job performance, fool him with the reasons why retiring early is the right idea.
Do as much damage control that you can do now. Put the plans in place for the future, even if they are painful. You are beating your head against a brick wall trying to convince him something is wrong and eventually that will damage you. You need to stay strong and healthy because you are the one that needs to manage life for all of you as this progresses. Focus on what you need to achieve and take whatever steps necessary to provide for yourself, your son and any other children and then your husband.
I never did get mine to the doctor, his sister did, so enlist the help of the brother or other friends and family members to get him to make that neurologist appointment. I am not going to promise you any answers from that but that is at least another step towards diagnosis.
My heart goes out to you how have a spouse that battles getting a diagnosis and facing it. From this thread and others it makes me grateful I have a hb who did not fight or argue about getting a diagnosis. I just hope he stays as compliant throughout this ugly journey.
Thanks, that all sounds like very sound advice. And thanks for the affirmation.
I am not ready to give up yet on getting DH to the neurologist, now that he offically has a referral. I feel like I have to strike while the iron is hot. I will enlist his brother who is coming for a visit next weekend.
On the way home from church today I casually suggested that we BOTH go to the neurologist, since he thinks I'm neurotic and I think he may be having some issues. That way we can let a professional decide, and we can both agree to accept the professional opinion. I promised, If the neurologist tells me I'm being neurotic I will never again bother him with, or mention my concerns. He ignored me.
He was teasing me today about me putting my credit card back in my wallet before I was finished with it, and my son putting his clothes away and then wondering where his shirt was. I said, "Well maybe we can get a family discount, when we are ALL having our diapers changed." So that led me to an inspirational idea. Tomorrow I will ask, "You know, I've been thinking...What if we are ALL being affected by some deadly mold in the house, and you're just more sensitive to it? We could find out in a few years from now that had we done something we could have saved ourselves, but by then it could be too late.... I really think for all our sakes you should go to the neurologist."
Try it, Mary. Good luck. My husband to this day has never admitted there's anything wrong. ONCE he said something like "I guess I'm not good enough anymore" when there was somewhere he wanted to go but we couldn't. But that was the only hint and he is now well along in the disease (stage 5). We got the diagnosis because he has great respect for the medical profession and tends to do what the doctor says. So after we got the referral, he went to the neuro, not understanding really what it was all about. When he was told the diagnosis eventually, he seemed shocked but forgot it shortly afterwards, although his short term memory was still good at the time.