Hello all you wonderful people! I swear if I didn't have you all to communicate with I would be losing my mind (I think I am half the time anyway, until I read this message board). Anyway, my 50 DH and I have had a strained marriage from the beginning (14 years) and in the course of taking over the bills I have discovered recurring charges for porn and it makes me just furious. He hasn't been diagnosed yet but did get a definate "memory loss" diagnosis two weeks ago and recommendation for an MRI and Neurologist, which he absolutely refuses to do because "there's nothing wrong." I am struggling with anger and finding it very hard to have compassion for him. Since hs insists there is nothing wrong I tend to treat him like he is capable of negotiating our issues, but he clearly is not OK so then I go into guilt mode and back into compassion mode, but it is getting harder to do especially since he is so uncooperative. So I need your encouragement. I am daily learning to turn it over to God and accept the life I have and find it impossible to leave him now. If he were healthy I would, but if only for my daughter's sake (she's 6) I have to take care of her father, my DH. I'm rambing here...has anyone else had experience dealing with dementia in the face of a crumbling marriage?
Hello Marise, that is unfortunate that the marriage is on shakey ground but there are others here in the same fix. the road of caregiving is as you read is quite exhausting and can be quite ruthless and heartbreaking. getting him 'tricked' into a real dx and all the tests will be crucial fo ryou since hes so young, to qualify him for assistance and early retirements/and govt programs. without a dx it will be iffy. many of us resort to trickery white lies whatever you want to call it to get them in to a neuro or a dr qualified in AD. sometimes their whole personality will change for the better and you may find a less stressed renewed relationship along the way. divvi
Marise, I can SO relate to your not getting your husband to see a doctor. I went through the same thing. He's totally unaware that he has any problems. It's called a term that I can't spell, but I'm sure someone will be along to help me out. It's something like agnosia. It's a medical term, which means they actually believe there is nothing wrong with them, but it is not the same as being in denial.
After I gave up trying to get my husband to see a doctor, I found out through this site that his whole brain radiation had caused his dementia. I have gone back & forth with the idea of divorce. Now I am glad he never went, because I found out that if it is medically documented that he has dementia, he will have a guardian ad litem appointed for him making divorce much more complicated and expensive.
Right now I am just taking one day at a time. I totally understand your heart bouncing back from compassion to fury. I've been there. (I don't feel guilty, what have I done wrong?) You are fortunate that you have taken over the bills. By the time I realized something was amiss with my husband's judgement, he had day traded away our entire retirement money. His "solution" for that was to put our house (correction HIS house, in his name only, I have a rental property) and buy a less expensive house. It hasn't sold yet, and he's lived off a credit card that he's stopped making payments on. (I don't need an alarm clock, I can count on the collection calls.) He found a "job" as a claims manager, and somehow he manages to do that. Appointments are set up for him. Right now the appointments are becoming less frequent. I say "job" because as long as I been with him, 11 years, he's never gone into a real job with set hours. Oh my.
Marise, I am sorry you are having to deal with denial (his) as well as the issues that come with memory loss, no matter what kind it is. I truly don't think they get that there are issues, cause remember that reason button is broken. Even in the early stages, the reason button is way off. I certainly can't guide you in what to do with your marriage, but encourage you to take care of yourself and your daughter first and foremost. There are several here that have had marriage issues as well as the journey. Hang in there they will come along and let you know how they deal with it.
As for getting him to go thru with the MRI and other test, I can't imagine not wanting to know whats going on. Does he realize that his memory issues could be something simple to treat? What if it was something treatable and he waited toooooooo long to get treatment and it turned into something untreatable? Then there is the whole Disability issue, If diagnosed he can get disability. Keep pushing, hopefully he will come around just for those issues alone. I am sure he is afraid of the outcome, but better to be prepared for the outcome than not. Best of Luck! Rk
Marise, have you tried reverse psychology? Tell him he should go to the doctor, neurologist, and have the MRI and PET scan done to PROVE that he DOESN't have anything wrong with him. That way he'll have proof that he is okay.
Now, if he believes that, and does that, and the results come back that he HAS AD, you will need the neurologist to put it in writing (make a lot of copies and hide them in different places) to show to him whenever he "forgets" that he has AD.
Marise, others have said it so well that all I can add is that I'm the same situation. It's not you. You are at a very difficult stage of your husband's illness, and he has other problems. There will be further changes and medications, and as time goes on, it will become more manageable for you. As for anger and guilt and compassion: the only stand I can take that works for me is: "He's an old man. He's sick. No one else cares. I will." I know your husband is a middle-aged man, so that's different. But, as you said, he's the father of your child, and you can do it for her. I would really like to encourage you to seek out all the positive experiences you can - whatever will give you joy and refreshment - and people who can do so, too. You won't have time or energy for the negative, draining people. If possible, detach yourself emotionally from your husband. You are not responsible for his porn; you are not responsible for his illness. It is a form of loving to keep yourself strong and balanced, in order to cope and not go under. I fall back on this: "What is the right thing to do here?" If I do this, it all seems to work out. All will be well.
Marise.....Thinking there is nothing wrong and hanging on to that for dear life is what they do. We ourselves hang on to that until we know something more is up.....even if they don't or don't want to think something might be wrong with their brain. But there are so many other signs than just forgetting....things like handwriting changing, inability to do simple math, mood changes, frustration with simple things and lashing out or crying, and not being able to find words that should come easy in their conversation.....just to name a few. These are just some of the signs in early on-set Alzheimer's. Does he show any of these or other signs that are not his normal?
It is so hard when the marriage wasn't what you hoped for, but the difference between them and us is that we took our vows serious and that is what holds us to this "in sickness and in health" vow we made. I totally relate to "the furious to the compassion" thing you speak of. If it ends up that he does have AD, your role as a care giver will be a long, lonely and very painful road. But it becomes one that they no longer are themselves as you knew them. How long any of us can hang on is something that is a totally individual decision....and believe me, you will have a lot of time to think about what you want to do or can do.
My heart and prayers are with you. Hang in there. We all find out just how strong and durable we all are when we are forced to live in this AD world. You will find your way in time.
Marise, one day you may have to place him in a facility for your daughter's sake. Most seem to go into rants, and that can't be healthy for a young child. There are others on this site with EOAD with children & I am hoping they will comment for you. My husband is 55. And this has been going on for about 3 or 4 years now.
My marriage took a turn for the worse when his symptoms starting showing up. I had no idea they were medically related. I just thought he was becoming forgetful and mean. But, I can't afford to support myself & care for him too. It's not a choice in my situation. So when the time comes, if I am still with him, I will just hand him over to his brother's care. If I am not still with him, I will hand over to his brother all the documentation of our financial situation, and medical info on his condition. His brother doesn't work, has lots of rental properties & STILL has his retirement income.
As to getting him to his doctor, I wish you a lot of luck. My husband had cancer, and one day I was convinced he must have a brain tumor based on his confusion. I convinced him to go for an MRI telling him we had caught the 1st cancer early, & that was why he was alive & healthy. He had the MRI, no tumor. After that, he was very certain there was nothing wrong with him & that I had overreacted. I wish I had a trick up my sleeve to give to you. Can you threaten divorce if he won't go? That he is not willing to do this for your daughter is hurtful and you will have to look out for her best interest, etc......
hi Marise I hear what you are saying..my husband was diagnosed 12months ago now & I went through the same thing you are now.For 3 years i tried to get him to see a doctor.I threatened to leave him i did the guilt trip i tried everything but it wasnt until he could no longer do his job that he decided to see a doctor.I resent that a lot because it proved to me that his job meant more to him than myself or his children did( we have 2 children aged 13 & 10 )...but after reading lots of info on this site I realise they have agnosia( not sure if the spelling is correct)my hubby has it big time!!he has gained 15 kilos since being home & tells me everynight how wonderful he feels he's the fitest he's ever been he tells me, well i've never seen him this fat & unhealthy in his life he was always active,rode his bike, went to the gym.He uses his gym now but he goes out in the shed for 10mins & then comes inside & forgets he was even out there.The only thing i can suggest is maybe find something your husband is passionate about( even his porn if you have to) & use it against him some how.I know it's probably going against everything you have ever had to do before because as you will find all of us spouses have a conscience( unfortunately)but if your hubby is diagnosed you will find yourself having to do this often.I wish you luck this is an extremely difficult time for you & then with children on top of it it makes it harder again.Dont feel guilty for resentment we go through the roller coaster ride of emotions all the time, your very normal, nobody but us can understand your frustration I found the stage you are at now the most difficult so far,later down the track you will have medication to help if needed.I wish you all the best & hope to hear you have finally got that diagnosis you & your daughter deserve.
This is sooooooooooooooooooooooooo insignificant in the story you are telling, frustrated spouse, and I do feel your stress under the circumstances. Mostly because you are too young to have to endure this.
On another topic, I'm trying to find a word for you. Intelligent brains abound on this website. I don't share those. I'm the Susie Housekeeper, Queen of Stain Removers and Trivia. When I find the special word I'm searching for, that fits your circumstance, I'll be back! Stay right there!!!!...............:-)
NancyB===now i am DEVVI???? short for devilishly funny i hope...:) i have MORE pseudo names than anyone else here! not fair...i demand a group name for everyone here..
ie-- Sunshyne----baby einstein..:)
bluedaze---catwoman..
joan---of course, joan of arc:) leading the crusade
marsh---Dr No..like james bond
gourdchipper---sweettalker.. or better Windtalker, like hot air:)
Mary is Red..but needs another one too
Bille--rambo--his slaps scare us silly.
pick a person here and think of another fun name!!!!!!!!!!!!!!!that befits them..or course..poop queen, queen of doodooo..all mine are appropriate..
Yess Devilish Divvi.. You pegged me to a certain extent. Although I'm really not a goody two shoes. I am teasingly quoted by my children and grandchildren all the time.... saying "uh oh...Grammy would tell you that's NOT NICE!!!" I must say NOT NICE more than I realize...and have for years. Remember, I've written before that my daughter told our doctor that I have gone around with band-aids in my pocket trying to fix all the boo boos in the world.
That being said, my husband has had many health issues... Polycythemia Vera, (thick blood) that caused strokes. I found a doctor at the Mayo Clinic that specialized in this disorder, and he stopped phlebotomies and put him on an oral chemotherapy drug that stopped the clots and the strokes, for the most part. He had compression fractures...I found a specialist that helped him with that. Other docs thought he had leukemia, and he didn't. The list goes on. So, imagine my melt down at the Neurologist's office when she told me that I couldn't FIX his Alzheimer's Disease...and that I would not be able to find anyone who could. That was NOT NICE of her to say that either. I think I'm a problem solver, a fixer, a make it all better person. So, what would you call me then...I demand a RENAME!
I'm not a goody two shoes, but I think I am NICE. I care waaaay too much about what people think about me and get my feelings hurt waaaay to easy. Why? Because I try too hard to make everything ok.
Divvi...Met (as in opera house in New York, home of all the great divas). Anyone going to your local theatre and watching it live from New York? Drat, I missed Madama (I saw it written that way - possible typo?) Butterfly.
Mary75--You do know the MD is for Maryland? Funny, once after I spoke as a caregiver, someone mistakenly called me Dr. B! Maybe I can bring in some extra income?
Hi Marise, you are not alone. Your situation sounds similiar to mine in many ways. DH is 58 and was diagnosed with FTD in July 08. Until the diagnosis, I thought he was just tired of being married to me and was making my life unbearable. Actually I was convinced he was cheating on me and trying to force me to divorce him. I found out about the porn and dating sites when he didn't pay the credit card bill and ruined our long standing credit rating ($20k down to $500) with a company we've had credit with for over 15 years. When the company started limiting the credit line, he foolishly gave one porn site his checking account number and they took all the money out of his account. Beware of this in case he has a checking account! He too denies he has anything wrong with him even though he's been to several specialists confirming diagnosis and 2 psych hospital stays totaling 4 months. I ended up just taking away all of his responsibilities like paying bills, got rid of the car (he is not capable of driving and coming back home), get the mail before he can, etc. It's called survival. Do what you need to do to get through this. In our case, once DH was on the appropriate meds, life has gotten easier.
MarilynMD, yes, I do know that MD stands for Maryland, but as a nurse, I'm triggered to think of "Medical Doctor" first. Also, your mind reminds me of doctors' minds that I've known: broad overview, decisive but compassionate. (Now I'm going to find out that you actually are a doctor!) Nancy B has come in as pepper spray.
MarilynMD, I think I ended up being Pepper. I'm anything BUT a goody two shoes. IF ONLY ...:-))
It was either that or something like the nightingale bird, because I try to fix the boo boos of the world. I think Pepper/Pepper Spray works better. I doooooooooooooo get a bit hot when the occasion calls for it.
This was good fun last night, but we need a better one for you...MarilynMD. (cute sign on name, too!) Maybe we can call you "DITTO"...
Marise.....I got to thinking about the denial thing. Any time this has come up in other conversations here, others will always say there is a medical name for the denial. That is not disputed. But having said that, I still know that in the beginning of knowing that something is wrong and then finding out that it is AD, I myself didn't want to accept that it was AD.....let alone my husband. He still had his heart and much of his mind and we just wanted to keep searching for what else it might be. It wasn't a "stand with arms crossed, pouting and saying no (like a two year old)", it was just not believing that something like this could be happening. It's a panic mode and then a research mode. Eventually, you accept it.....you have no choice. My husband was extremely intelligent and just didn't want to be labeled with anything wrong with his brain if he didn't have to be. Eventually, he did accept it.....didn't like it.....he hated it....but he did accept it. That was many years ago.
I guess I am rambling here but I just feel in the beginning, people with AD don't need to be labeled with even something more than what they have. I feel they have a right to deny it until they no longer can. What else have they got to hang on to. My approach to finally getting him to a neurologist was just the fact that if it were something wrong, then maybe the medications would stop it. You can say that maybe it was due to a fall or a virus or whatever, but there are ways to convince them that they might beat this if they just get the proper care. If the AD has advanced beyond this point then it probably is the medical denial thing. I read back on this and think it sounds like I am rambling and I am but I needed to. I think it's a fine line point and one that needs to be recognized.
On the denial/anosognosia debate--we could do a whole thread on that issue (maybe already have?) Here's my take--the initial reaction for both of us was plain old denial. EVEN with family history, EVEN with doing all we could to prepare for this our whole married life, EVEN with telltale signs like memory loss starting. Then we went through the stages of grief, and I think I arrived at acceptance before my husband. It took him 3 1/2 years to fully accept the diagnosis and to be able to say "I have Alzheimer's". But--here's the deal--now I think that it's anosognosia that keeps him going every day--he's happy and is enjoying life--but doesn't seem to be able to grasp the full concept of the direction he's going in and where he'll end up. There's no doubt in my mind, that's a blessing. He's requiring a little more assistance now with the ADL's, but amazingly, it doesn't seem to register with him. Call it whatever you want, I am so glad that he doesn't detect his decline.
Thanks, Mary75 for comparing my thought process to a doctor's, but I am not. My major was one of those ambiguous subjects, American Studies! I have always been much more inclined towards the arts than the sciences. My guess is Madama Butterfly may be the correct name (Italian) but we're more accustomed to seeing the English, Madame.
Nancy--like the Pepper name for you--your personality does come through strongly on your posts--you are very entertaining. I also like Ditto for me.
You guys are playing havoc with my cleaning schedule today--gotta go.
Anitalynn, "anosognosia" is not a medical term for denial. Patients who have anosognosia are not in denial -- instead, they have brain damage that causes a lack of self-awareness. The damage makes it difficult or impossible for them to realize that they have problems. Denial is a self-knowledge that means someone is aware that they have problems, but are refusing to accept that they are serious problems and/or refusing to accept what they have been told about the disorder that is causing the problems.
When they have anosognosia, our spouses don't understand what we're talking about if we try to convince them to see a doctor to find out what's wrong so it can be treated. They genuinely don't think there IS anything wrong. Since they don't think there is anything wrong, they see no reason to treat non-existent symptoms.
You and I might have difficulty remembering common words from time to time. We know we're doing that, but we insist we're fine, it's just a little stress, no need to see a doctor. (But underneath, we're worried ... what's going on???) That's denial. (And probably caregiver dementia.)
My husband genuinely does not know he is having more and more trouble finding words. He believes he is just as articulate as he used to be. That's anosognosia.
Sorry that I do not know the terms that many of you seem to know and are so willing to share. Also sorry if I insulted anyone. Just making a point that there is a window when those with AD do know what they have and try to seek other possibilities. I guess I should just keep these thoughts to myself.
anitalynn, don't you dare keep your valuable thoughts to yourself! Your point is well taken. Others were just carrying the ball from there. As my Irish mother used to say, "Two heads are better than one, even if they're cabbage heads." (Which you're not!!!)
My husband has known or suspected he has Alzheimers since day one and kept telling me and everybody that would listen, that he had it. He was eager to have all the tests and anticipated the Doctor could give him something that would reverse the diagnosis. That said, he doesn't talk about the disease anymore. He is aware he cannot complete a sentence without forgetting words and thoughts. He makes a comment about losing what he was going to say.
He thinks I connive against him (I wouldn't do that???) and doesn't trust me. Today he wants to see his Will. He doesn't know why, but he wants to see it. I got out a copy for him and he is reading it. I told him how it was - If something happened to him first everything went to me and then divided equally among the 3 kids. Didn't try and explain about it going through a Trust as the Lawyer wrote it up because he would never understand that. We went through this whole deal about 6 weeks ago. I do know I am going to leave things as is (My Will is the same except in reverse.). I will just keep distracting him because he could not understand things the last time we talked with our Lawyer and Lawyer said to just let things stand as written several years ago.
Anitalynn, I had been worried that YOU were upset or insulted if you thought we were using a fancy word that actually meant denial instead of just plain, old "denial".
Anosognosia is something that is very difficult for me to get my brain around, even though I see the results every day. I've read that article a gazillion times now, trying to understand it.
And there are AD patients whose symptoms from that type of damage are milder than others. We were talking on another thread about some AD patients who post on the AlzAssoc forum, and are able to describe some of their symptoms (from THEIR viewpoint of what's going on).
Some patients are entirely too much aware of their problems, and become very depressed and are miserable.
Overall, I guess those of us whose loved ones have no awareness of what is happening to them are lucky, even if it is difficult to get them to see a doctor or take their meds.
At the real support group (we call mail that comes into the mailbox outside the house, "snailmail", so what is a real support group vs. a virtual one like on this board?) anyway,
there was a new woman, I'd guess late 60s, early 70s, 2nd marriage, husband just diagnosed with "probably " Lewys Body Dementia. Wanting to know "how to tell him what that means." Wanting to know is the diagnosis FOR SURE? How does the doctor know?? It all sounded so familiar, although I don't think we have anyone on here currently with LBD, do we? And we went through all the usual: get rid of the gun. Hang on to the credit cards, talk to an elderlaw lawyer, etc. etc. You all know the drill. It's so sad to see people in that early denial stage. She finally said, so do people always end up in a nursing home? Well, not if they die first...
I will add, that our cyber conversations are much like the ones we would have around the kitchen table drinking coffee together. We ..especially me, are guilty of going off topic as we are talking. One story brings another one to mind and that leads to another...and then we are on a different path. I apologize if that is what we did when we were responding to the discussion that YOU started. It doesn't make your situation any less important, or any less stressful. We reach a point on this cyber discussion site that we just go on and on talking with our keyboard. I have revealed feelings on this keyboard that I have never said out loud, and wonder if that is a wise thing! Something about this place gives us permission to just let it all 'hang out".
I totally sympathize with your situation and hope you understand that we never intended to get so far off the subject begun by Marise and AnitaLynn.