DH Denial

cw2502

Background: we are 3 years in; just had 2nd neuro psych eval 3 weeks ago and met with neurologist yesterday to go over results (which of course I already had).  DH despises her.  Said he was never going back.  Told her to never say the word Alzheimer and dementia to him again. It's the elephant in our home.  I still work and he is retired (10 years older than me).  I can't talk to him about it or he gets raging mad and blames me and says I don't love him, etc. etc.  How in the world can you help someone who doesn't want to be helped, and who can't understand they have a problem.  This is the most frustrating part for me. Please, someone tell me how you handle this!  This is only my second post ever and I do not get on here very much, so I'm sure this has been addressed before. But I'd love any input.  Thanks in advance.

p.s.  he takes his meds but is not cooperative with any suggestions the neurologist or anyone else makes to him. 

JJAz

CW,

Unfortunately, it's part of the disease to deny it.  It's called anosognosia.  There is no solution except for us, as caregivers to change.  It took me a while to realize this and accept that my behavior change was the only thing that could make a difference.  But once I completely accepted my responsibilities, it was so much easier.  Watch some of the videos on YouTube by Teepa Snow.  She is an amazing dementia caregiver trainer.  She helped me a lot.

CStrope

cw2502, there are many of us in the same boat as you, and it sucks, it really really sucks. Some days I handle it okay, some days I don't.  It's important to have family, or friends, or even just these message boards to vent, ask for help, and sometimes just find connections that help you get through the day. I'm 8 years younger than my husband.  He was diagnosed 10/2020 but in hindsight there were signs as long as 2-3 years ago.  He is now 66, and like you, I am also still working.  I'm angry for not only what it is doing to him, but selfishly what it's also doing to me, and that's ok.  I have a right to be angry.  Those of us that have a LO with this horrible disease lose so much along with their spouse. 

So, all I can say is keep talking, keep asking, and allow yourself to feel whatever it is your feeling.  Anger, sadness, guilt, fear, or all of these things.  Can I ask, how old is your DH?

Iris L.

cw2502 wrote:

  I can't talk to him about it or he gets raging mad and blames me and says I don't love him, etc. etc.  

This is exactly what happens with anosognosia.  If you try to make him see reality he will get upset. This is not denial, but actually a characteristic of dementia.

Please, someone tell me how you handle this!  This is only my second post ever and I do not get on here very much, so I'm sure this has been addressed before. 

You have to learn work-arounds from the other members.  Try to read the message boards every day.  Do not mention the words Alzheimer's or dementia to him again.

Iris L.

cw2502

thank you JJaz; I did not know that.  I will research and educate myself on that.  From my first post, someone (maybe you as I recognize your profile) told me about Teepa Snow.  I've liked her FB page but have yet to find time to watch any of her stuff or participate in any of the mini sessions.  

I have walked a tight rope our entire married life (36 years) so I am accustomed to changing my behavior and being very careful with my words with him.  But was just hoping there was a way to get him to acknowledge the disease.

cw2502

CStrope, exactly!!  I am 10 years younger; he is 72 and I am 62.  I want/need to work another 4-5 years to make up for the years he was self-employed (refused to work for anyone else) and did not have 401k, etc.  I do have a huge support group between siblings, our children, friends.  But as I mentioned to JJaz, my hubby has always been a hothead and I've tip toed around him our entire married life.  So this stage of our lives has been even more trying for me.  Someone else in the forum mentioned a roller coaster, and thats exactly what I told my sister the other day.  One evening my hubby can be sentimental, teary and reflective (he's obsessed about his deceased brothers [died much younger than him and his parents made him do all the arrangements] and his parents.  He had a tormented childhood; which I believe is why he is soooo hard in his adult life]. The next he's bad mouthing all the neighbors and complaining complaining, complaining.  

Anyway, I have all those feelings too. I appreciate the feedback.  I do need to get on here more often as Iris suggested.  From my first post, one woman wrote "this is all a nightmare that she can't wait to be over".  And I agree.  

cw2502

Iris L. thank you.  I definitely need to get on here more often!!   I have been keeping all of my books and the evaluations, etc. out of sight!  I was beginning to think maybe I should keep everything out in the open so he would start seeing them.  So is that not a good idea?  To at least let the elephant out, albeit without shoving it down his throat.  For the most part, I only mention his "short term memory" loss with him.  The neurologist (at this last appt) mentioned he needed to get the Safe Senior Driving evaluation and boy, did that set him off.  I can't even see him cooperating with that.  Even though I agree!  He is aggressive and angry when he drives.  I have managed to not drive with him these last 2 months and am committing to not be a passenger with him if at all possible. Life changing for us for sure.

Joe C.

CW, This was one of the more challenging aspects of the disease I had to deal with. My DW had the exact same reaction to her first neurologist appointment, hated the Doctor and vowed never to go back. When I tried to get her acknowledge what was going on she would just get angry with me, at one point she did not speak to me for several weeks. I had to learn to just let it go, she was never going to acknowledge the disease and trying to discuss it with her only created friction. For the last 3 or 4 years I have not mentioned Alzheimer’s and it has made it much easier for me to care for her. I know this is difficult but for me that’s what works.

cw2502

Thank you Joe. So, she continues to go though, right?  Is it a battle each time or does she go willingly?  Does she comply with any of their suggestions?  I can get hubby to go because I tell him they won’t prescribe his “memory medicine” unless they see him.  I also can put a lot on his General Practitioner. He looooves him. So at his last visit I had the GP suggest the second neuro psych eval and suggest a hearing test (we now have hearing aids, much to his chagrine). Being able to send messages in advance to the GP and neurologist have been a life saver for me for certain things.  Bless you.

Crushed

Thank you for reminding me of the adage. 

"I was sad because I had no shoes until I met a man who had no feet"

The suffering, stress and pain this disease inflicts on caretakers is incredible.  I merely have the slow incredibly painful loss of my life partner.  I had her at home and traveled with her until it became impossible. She was losing understanding of me when she went into memory care for her own safety in 2017.  She was stubborn all her life and there were some stubborn moments.   But nothing hostile.  I send you all the warmest thoughts 

Joe C.

CW, It actually took me two years to get her to see another neurologist and I had to use a fiblet to get here to go. I told her she was going for a sleep apnea test, the neurologist was in on the fiblet, and played along asking questions about sleep patterns then moved on to cognitive testing. BTW, it turns out the original neurologist really was a jerk, as I started meeting other people who had seen him they all confirm DW reactions to him. DW has never willingly taken her meds, there have been a series of fiblets to get her to taken them, the latest is they prevent Covid. It is very important to have a neurologist to prescribe and adjust meds as needed so I keep her going by using one fiblet or another.

banpaeng

I came on here to post and found this thread.  I am close to this so I will post here.

My wife is in stage 5 and busting down the door to stage 6.  She is not the one going crazy, I am.  I have tried so many of the tricks and lies that people have told me, but it is driving me crazy.  I know it is the Alzheimer's.  What do I call what it is to me.  My shrink says I am coping well.  I told her if I am coping well, I really feel sorry for the ones that are not.  Most won't know what I am talking about, Jerry Clower. told a joke about Marcel going coon hunting.  At the end, with Marcel up in the tree with the coon, yelled at Jerry, "Jerry, just shoot up in here, one of us got to have some relief.".  That is how I feel

Wish it were a joke, but this is real.  I am tired of looking at videos, reading help.  Most won't agree but this C__P is fly by the seat of your pants and hold on TIGHT and that is an understatement.

I don't know where this trip is going, however, will be looking for the END.

Ed1937

cw2502 wrote:

I have been keeping all of my books and the evaluations, etc. out of sight!  I was beginning to think maybe I should keep everything out in the open so he would start seeing them.  So is that not a good idea?  

 

 

 I think that would not be a good idea. He has anosognosia, which is the inability to realize he has a problem. When you realize it is an inability, you will be able to handle it a little easier. If he were to see the doctor's report or other material suggesting he has dementia, that would likely upset him. Best to just leave that alone. And please don't mention it.

Please take advantage of the forum by visiting it daily, even if only to read the threads by others. There is an incredible amount of information here.

There are a lot of videos on youtube pertaining to dementia. Teepa Snow has some of the best available, and I also like videos you can find by doing a youtube search for "careblazers".

HSW

My husband denied as well and had very violent episodes while I was trying to convince him he needed to go to the doctors. His rage episodes came in waves sometimes lasting weeks. His denial behavior would cause him to walk out of the NP office, not even get in the car to go or try to walk home once he saw where we were.  Deep inside he knew there was an issue but he wanted to attribute it to head injuries, so that is how we handled memory loss. Behavior...that was really tricky but I called Dr Caplan at MGH a specialist and he went with that. We only saw him twice as it was a 2 hour drive.  I worked upstairs so I could head off some of his rage triggers and with medications his rage episodes gradually reduced. Don't let that med expire as I did. Rage came back with the stress of his mothers death and we had a few bad months.

Driving: Since he had destroyed his car with an axe he had been using my Malibu to go to the dump and post office. As a denialist, I doubted the driving evaluation would make any impact on him taking the car. My plan was to scrap the Malibu and get another used vehicle which I would never let him drive. His license expired and I scrapped the Malibu. He never even noticed he wasn't driving. However the next vehicle I purchased was a Colorado ZR2. Our son picked it out and DH loved it so much, he convinced himself that the dealership had given it to him for fixing a hard to diagnose car. Once I got the keys away from him we let him think it was our son's truck. I  haven't gotten him a new ID because in 2019 he still thought he was driving and then due to covid closure.  I recently picked up a used minivan. It has absolutely no appeal to our son. DH appreciates that he can recline in the backseats if we drive at night. 

harshedbuzz

cw2502 wrote:

The neurologist (at this last appt) mentioned he needed to get the Safe Senior Driving evaluation and boy, did that set him off.  I can't even see him cooperating with that.  Even though I agree!  He is aggressive and angry when he drives.  I have managed to not drive with him these last 2 months and am committing to not be a passenger with him if at all possible. Life changing for us for sure.

This is very concerning, with an Alzheimer's diagnosis in his medical record and the neurologist ordering a driving evaluation, an accident- even one where he wasn't at fault- could result in you being sued. You could lose everything. I spoke with dad's insurance agent who told me dad's policy would not be in effect with his diagnosis; you might want to check with your own agent concerning this.

We were fortunate that dad's neurologist told him he couldn't drive or manage his investments any longer. This allowed us to validate his sense of loss while still keeping him off the road. Cars and driving were everything to him. He talked about driving pretty much non-stop. Not 6 weeks before he died he asked me to drop his car off at the MCF so he could leave if he wanted. By that point he was very impaired and I could just ask him which one he wanted and promise to park it in the resident's lot in the back. 

Dad loathed his neurologist, as well. Dad had mixed dementia and one of those was alcohol-related, so the doc had reason to discuss his dementia in the context of pushing life style changes to preserve cognition until his Alzheimer's progressed further. But for most PWD, there isn't a reason to discuss findings if it just upsets them.

After dad's last neurologist induced meltdown, we found a geriatric psychiatrist to manage meds and advise us on care. His gerispsych suggested a driving evaluation with a specialized OT, but we never followed through. I told dad I would drive him but that he needed to make the appointment. 

HB

M1

CW, like you, when my partner first started really going downhill 5 or 6 years ago, I was convinced that getting a diagnosis and getting her to acknowledge it would be the way to go.  I thought she would have insight that she needed help and would know when to defer to my unimpaired judgement.  Our PCP basically laughed at me.  Long story short, it's been me that's had to adjust and change.  Only rarely is she aware of the problems, and only rarely do we mention Alzheimer's or dementia (we had one moment of insight this week, as I posted, but they are few and far between).  It's very difficult to have to maneuver around your spouse, but that's likely what you are going to have to do.  We don't go to a neurologist--medication trials were a quick bust, so our lives are simpler in that regard.  And haven't needed a geri psych yet, as she's not delusional yet.  But I have had to do things like gradually ease the finances out of her control, take over all medications, stop all direct mail marketing, take away the car keys and the guns (we live on a farm), go behind her back to get help scheduled with the many things she used to do.  The one thing that's actually helped with her decline is that she's lost so much executive function that she rarely tries to do things that will get her in trouble.  She mainly likes to watch TV and vacuum, and rearrange things in the house.  Moving things around can be irritating, but it's not dangerous.  Finally, this week, she agreed to sell her car.  She's such a financial conservative that telling her she could get sued (and could save the money she's spending on car insurance) had some sway.

Good luck.  None of this is easy.  But I think all of us are posting similar things so that you can not beat your head against walls that you don't have to.

Rescue mom

My story is much like M1. But not much help for CW.  My DH with midstage Alzheimer’s admits he has memory problems, but nothing else. He has lost basically all executive function and does not initiate anything to speak of (except rummaging through trash and drawers). The good part is he does take direction (to a point) and is  unlikely to hurt himself. The bad part is, he does not “recognize” a problem around him—like a broken water pipe, food burning on stove, spills, or clogged toilet, etc.

He doesn’t complain about being unable to do things, or being unable to remember, he simply does not do them. Ignores it, or walks away. If I ask him to do something simple, he doesn’t refuse, but he will likely just....walk away, or put it down, or take a step and ask what he’s doing. But he basically does not see he has a problem. He has me doing everything—he truly can’t—and that does not bother him a bit. That’s been a huge change, he used to insist on doing so much chores and house and car work.

He was told at Dx that he had Alzheimer’s, probably midstage. (The doc said he was surprised at the amount of brain loss since at the time DH could say some socially appropriate phrases and smile and nod). DH reaction to Alz. Dx was to say “at least it’s not brain cancer.” I wonder now if he understood, he almost certainly forgot in a few days. He would read the doctors report with Dx, but did not seem to comprehend it. 

I don’t say Alzheimer’s or dementia to him, although he will often say “I don’t remember that, you know I can’t remember” in conversations or during TV shows, etc. At least he is docile and can still toilet, although dressing and bathing are beyond him now. 

Cl, use that doctor your DH likes. Try to make things be on doctors orders.

Iris L.

cw2502 wrote:

 Being able to send messages in advance to the GP and neurologist have been a life saver for me for certain things.  

You've got it, cw!  This is one of the work-arounds.  

Be aware that he may not be able to adjust to hearing aids.  They require an amount of fine-tuning.  

Iris

ButterflyWings

Hi CW - 

I did not know that my DH had ansognosia (didn't know there even was such a thing!) It helped me SO much to understand he was not in denial, and that there was no point in trying to insist that his damaged brain must come around to my way of thinking. Not possible, not necessary, and not at all helpful as you have described. My LO did not get angry, but just totally dismissed what I was trying to have us learn together, about this disease of his that affects us both totally. 

It didn't take me long to stop wasting my time and breath, because he was seriously like "that doesn't make any sense". "No, that's not what the Dr. said", and "OK fine, believe whatever you want but I'm good". So this forum helped me quickly learn to work smarter, not harder, where this tricky dementia life is concerned. We are deep into stage 6, and it still isn't always easy for me to grasp. But it is what it is. 

Anosognosia is real, and I have come to see it as a blessing in disguise. Why? Because I don't know how my LO would feel, if he could comprehend that he has a terminal disease that will strip him of every single skill he has worked so hard to develop, and then will take his physical and mental faculties, steal his dignity and his very memory of everything and everyone he loves, including forgetting who he even is. I can understand that some people would not even want to live another day if they truly could grasp that. And I love him, so I'd never want to inflict that kind of pain on him. Especially since we can't do a darn thing to stop this decline. This article helps explain how to handle ansognosia compassionately. Wishing you & us all, a good day today. 6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

cw2502

Thank you all so much!  I read each and every post thoroughly and this has been very helpful.  I appreciate your time in responding.  Have a great week!

JJAz

I also can put a lot on his General Practitioner. He looooves him.

 

 Maybe you can start here with the driving situation.  It's vitally important that he stop driving.  Image if he hit a small child.  You could be sued for big $$ and it's possible for your insurance company to deny a claim due to his impaired status.  It could ruin another family's life and yours too.  

In many states, a physician (or even a lay person) can report an impaired person to the DMV.  The DMV will follow up and require a road test.  There are other methods too.  My FIL's doc hand wrote a prescription for FIL to stop driving.  He kept it in his wallet and any time he wanted to drive, we'd remind him of the prescription.  He'd pull it out, examine it, think about it, and then say OK. 

 There is no easy solution to this problem. But everyone faces it eventually, and it won't get easier.  You might as well solve it now before tragedy hits.

Dig2dye

I could have posted this.  Only married four years anc sm considering divorce.  I don’t divorce. But he us in denial and is so passive aggressive I have to say please and thank you; not permitted to get angry, worried or even concerned.  No wonder I am number four.

CStrope

@Dig2dye, I hear what you're saying about divorce.  I've been married 34 years, and these last 3-4 have been terrible.  Even my daughter mentioned that I should divorce him!  That was all before the diagnosis, now we understand why he's been such a jerk.  Not that it makes it any easier to deal with!

Iris L.

Dig2dye wrote:

 But he us in denial and is so passive aggressive I have to say please and thank you; not permitted to get angry, worried or even concerned.  

Welcome Dig.  Please reread and understand that anosognosia is NOT the same as denial.  Nevertheless, he will become upset if you try to correct him.  

Does he have a dementia diagnosis from a neurologist?  

Read a lot of threads and learn the work-arounds from the other members.  Read very carefully since you are still somewhat a newlywed.  Post often.  

Iris L.

SusanEL

Hi, My DH also does not realize he has Alzheimer's. I didn't understand why he didn't.  He never has.  He has a brother and two sisters who passed from Alzheimer's.  I don't bring it up but feel guilty when trying to learn about it.  He knows he has issues with memory but thinks it is because of age.  He is 73. At the DR's today and he did not understand what the doctor was talking about when he was referring to doing brain activities.  I was uncomfortable with that.  It was not his regular doctor.  

He is in the middle stage but he functions.  So hard to see things changing.