DH in denial

kcobbcalls · April 16

My DH was officially diagnosed with MCI and is not accepting it. He says he flunked the test because he wasn’t feeling well. He will not agree to any further testing and, when I try to have a conversation about it, he just dodges and deflects. I finally told our 3 adult children and a few friends but swearing them to secrecy as my DH would be beyond angry with me. He’s 81 and I’m 72 and we’ve been together 54 years. We don’t really “talk” anymore and our future is bleak. I would be fine if he would just acknowledge the situation then I’m happy to become the caretaker and manager of the household. But because he won’t acknowledge it I’m feeling very angry, hurt and disrespected and feel like I’m floating adrift out on
an iceberg! He’s in the early stages where I notice his personality traits that were simply annoying are now intense. But in phone calls and brief get togethers with others you would never know. I have started an Alzheimer’s support group which has been great, I can share with a few friends andI see my priest monthly but, otherwise I’m in this
on my own. His siblings do not know. I just don’t know how to cope given his unwillingness to acknowledge the problem. I really just want to get away and feel terribly guilty about that desire. E we have a guesthouse on our property and I’ve thought of going there for a few weeks. Any
thoughts would be greatly appreciated. Sorry to ramble

David1941 · April 16

So sorry for this dreadful situation. In this group you are not alone & we will encourage you to take care of yourself, even at cost of your relationship with your DH. In our family we have a saying that “denial is not just a river in Egypt. A bittersweet saying.

Ed's mom · April 16

Did I write this? You describe my life perfectly, until last week when I joined here. I was obsessed for days reading every comment, article, resources. Starting this past Tuesday I have told our 3 closest friends and LO's sister. I'm a new person, my anger is better, not gone but I finally understand, really understand. I've stopped the constant arguing from remembering what I heard here, "you can't reason with someone who's reasoner is broken". I slip up constantly but I have a new attitude. She's sick, not being a jerk even though it feels that way. We're just starting this and don't have an official diagnosis. But after 44 years I can see the problem and friends here have helped me understand more.

Hang in there, you have landed where people know and have lived experience to learn from.

trottingalong · April 16

Your husband has what is called anosognosia, the inability to comprehend his disease. You cannot reason with him and explain to him what is occurring. Do a word search here on this site and you will find wonderful, helpful posts dealing with this common problem. At this point you are just spitting into the wind. You came to a wonderful place for support and information.

Michele P · April 16

https://alzconnected.org/discussion/75826/dh-in-denial

Welcome. Your husband probably will never accept his diagnosis. Along with your adult children, come up with a plan to assist you and keep both of you safe. If you have not done so, see an elder law attorney and get your affairs in order while he can still sign documents. You will have to take over everything including finances. Get accounts, log in and passwords for all of his accounts, bank accounts, brokerage accounts. Get the same for computer and phone. Get a plan b in place with your family in the event you can no longer care for him. This involves touring memory care facilities and putting him on a waitlist with a refundable deposit. Call in home care agencies and get quotes. Call your local Council for the Aging and find out what services are available including adult day care. Put TILE gps trackers on phones, wallet, keys. Through the Life 360 app, it tracks the person and items. He should not be driving. If he gets into an accident, you can get sued for everything you own. Insurance companies will not cover an accident with a dementia diagnosis. Get the book The 36 Hour Day. It will help you prepare for what’s next. Come back for help and support.

jgreen · April 16

Hi, @kcobbcalls

You’ve received excellent advice from members of this wonderful group. I am going to give you an assessment tool from Tam Cumming’s website. From what I’ve read in all my research, the ‘official’ diagnosis (whatever it is) is most often made when the patient is in the middle stages of the disease, and not the early or ‘mild’ stage. The earlier behaviors are easily missed or overlooked as we think this is just the ‘normal aging process’. It looks like you’ve already noticed many behaviors on the tool. Start noting other nuances and it may help you get a better idea of where your DH falls on the scale.

Dementia Behavioral Assessment.pdf

I hope you come here often and let us know how you are doing. We care!

H1235 · April 16

Welcome. He is not in denial. He has anosognosia. It is the inability to recognize their own symptoms or limitations. No amount or explaining, reasoning or even doctors test results will convince him. Trying will only lead to an argument and you will lose! The number one rule of being a dementia care giver is never argue or try to reason. There are a few common approaches that may be helpful. 1. If it really doesn’t matter (not a safety thing) then just agree with him. It’s hard to always be wrong, but it gets a bit easier with time. 2. Do things with out telling him or consulting him. 3. Distract him by changing the subject. 4. Avoid topics that are a sore subject. ( yes it’s a bit like walking on eggshells 24/7). 5. Lastly use a therapeutic fib. I know it seems like an awful thing to do, but if his brain can’t understand the importance of something this may allow things to happen without him getting upset. When to use these different strategies depends on the specific situation. It’s something that is very difficult to get used to. Someone above mentioned getting legal matters handled (very important). I would suggest you just present it as something you both need to do since you are getting older. You may want to meet with the lawyer in advance to discuss things without your husband (see number 2). Discussing the need for legal documents to be drawn up in front of your husband will probably not go well(see number4). If you try to convince him this needs to be done because of the mci diagnosis it probably will not go well. I will attach a few links that might be helpful.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://www.darpelelderlaw.com/therapeutic-fibs-and-dementia-a-compassionate-approach-rooted-in-love

understanding-the-dementia-experience.pdf

mrsdee13 · April 16

I am so sorry to hear this. I also know how you feel. I've been there. My DH passed on 1/9/26, and I am learning to deal with him no longer in my life. It is important for you to vent your frustrations. I am going to start participating in a grief counseling group. I wish you the best, and you keep reaching out. Please take care of yourself.

beachwalker5 · April 16

Sorry for your new situation, welcome to "anosognosia-land". All good advice above, most importantly take care of yourself. Don't argue with him, "live in his world", patrol the perimeter and keep him safe (away from the steering wheel, his gun collection or any other sources of possible harm).

I'm in same situation with my DW of "patient won't give consent to be diagnosed". If you can get your DH to a doc for a neuro work-up/ diagnosis, it might rule out stokes, tumor, thyroid condition, etc. so I hope you have better luck than I have had to date. On the other hand, if your DH is suffering from dementia/ AD, there's no cure anyways so don't over-stress yourself out over a diagnosis. Medical diagnosis might be helpful in treating symptoms/ side effects but then a PCP can also prescribe meds for anxiety/ depression/ etc.

Good luck and lean on your support group and your friends here when you need to vent. We're all in this together.

Andi C · April 16

This all sounds so familiar, my husband won't acknowledge his dementia either. Thank you for the tips, I definitely need to put them into practice.

Thanks to all of you for sharing things that have been helpful for you while going through this journey

Lethe · 12:45AM

I could have written this a year ago. I thought as you do that if he would just acknowledge it we could move forward. I didn’t want this diagnosis but I did want to be in it “together”. When one half of the couple denies the cognitive reality you no longer have a “shared reality” and that makes it lonely and hard. My DH was diagnosed a year ago with MCI and then the wait for neurology was another 9 months. He also refused appointments but I just kept the appointment and learned how to change the subject and managed to get him there. He now has an Alzheimer’s diagnosis. So don’t ask, just start to do what needs doing. See an elder attorney for POA and to get your estate in order. Start taking over bill paying, making appointments, whatever he used to do. We told our kids together and he refused to tell his siblings so I gave a deadline for him to inform them and then when the deadline arrived we called them and I told them.
He dismissed the seriousness by saying “the psychologist didn’t know what she was doing”. He still hasn’t told his friends. I’ve told my friends and our mutual friends. I found it’s a lot of baby steps and just doing what needs to be done. It’s a lot so give yourself some grace.

howhale · 9:29AM

Anosognosia may be the most difficult aspect of the disease to navigate and deal with. My DW had it from the start. Thought the psychologist was terrible and completely ignored all my wife tried to tell her about how she hates taking tests. Rejected the diagnosis from the start and remained in that denial throughout. In time she began to feel everyone knew about it and thought she was "crazy" (her words, not mine) and refused to see anyone. Between the pandemic and her anosognosia we isolated for a few years. Her outbursts after seeing anyone were quite difficult as she refused to see one child after another. Of all the hardships of this disease, anosognosia was by far the most difficult. And then it was gone, but she had advanced much farther and so was much of my DW. So sorry anyone is having to endure this condition of AD compounded by anosognosia. Talk to your doctors and maybe there is something now they can offer. My wife rejected her diagnosis and therefore rejected taking her medications, all of them regardless of how well we disguised them. Finally had hospice involved and the nurse was able to give her an injection to help and called it her flu shot. She got a "flu" shot every two weeks and, of course, never knew it. Each time was new by then. Lastly, come here as often as needed to vent. It helps. It helped me survive. Only wish I had found this site sooner.

harshedbuzz · 11:30AM

@kcobbcalls

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Your DH has anosognosia which is the inability to recognize their own condition. Even if he occasionally admits to a poor memory, he won't be able to parse the impact on his abilities nor will he recognize the other symptoms of dementia— changes in mood, lack of social filter, lack of empathy, poor executive function. This is not denial. In a lot of ways, it is a protective response to the horror of what's happening to their brain.

You aren't ever going to convince him of his lack of capacity. The first rule of Dementia Fight Club is never try to reason with someone who has a broken reasoner. Since he doesn't recognize it, it will just feel like gaslighting and damage your relationship. Better to let this slide and remain his ally.

The other thing you are seeing is showtiming. This is when a PWD is able to get their act together briefly for friends, doctors and family who aren't there 24/7. This can be crazy-making for the caregiver as it prevents others from seeing the reality of the situation. In the case of doctors, it can interfere with getting help when needed. My own dad could showtime like there was an Oscar in it for him. He was so pleasant and engaged at his geripsych appointments that I had to send the doc a video I made of aggressive "at-home dad" threatening violence to unlock the meds needed to keep mom safe.

He's never going to acknowledge the impact of any of this on you. TBH, it's unlikely anyone else who isn't living it will either. At some point, you will be taking over all of the tasks associated with your household. Depending on your current set up and your DH's personality, this may need to be done discretely. If he is aware you've taken over, not only won't you get credit, he may become agitated. None of this is fair because you've already lost the ability to talk any of this over with the person you would normally have turned to. It's an adjustment; one he's not able to make which means you have to or this disease will take you both down.

Come here often. If you're still struggling, medication might be useful. Your post reminds me of my mom just after dad's diagnosis; a support group, therapy and well-chosen meds helped her get to Stage 8 in one piece.

HB

DH in denial

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