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Denial

Cletus
Cletus Member Posts: 5
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I am brand new at this. My DW is in total denial about the possibility that she might have the beginnings of Alzheimer's or dementia. She is 73 and I am 71. She is the youngest of seven siblings but she is the only one left in her family. Her mother died in her 80's of Alzheimer's. Several of her other siblings had either Alzheimer's or dementia before dying.

She will not allow me to talk to her about it. I can't get her to go to a doctor. She is very stubborn. She gets very angry with me if I imply that she might be having the beginnings of Alzheimer's or dementia.

She has been having trouble remembering words for several years now. I noticed that her hearing is showing signs of deteriorating. That could be a sign, am I right? We have been having a lot of arguments about things lately and I cannot differentiate between us having marital problems or is she getting Alzheimer's or dementia. I am not saying the arguments are all her fault. I am at fault too.

Whenever I try to discuss any aspect of the possibility of her having Alz or dementia she puts it on me, for instance, about the hearing problem: If I say I had to repeat something five times (no exaggeration) she will say that I was slurring my words. I told her I would go to a speech therapist if necessary, which I would just to show her.

Another example: I really hate to say this but it appears she is becoming less intelligent. It makes it sound like I am intelligent and she isn't. I Not true. We both have areas that we are intelligent in. There just not always the same areas.

I am at my wits end about trying to get her to go to a doctor w/o her becoming angry with me.

Any suggestions would be appreciated.

Henry Bransford.

Comments

  • ButterflyWings
    ButterflyWings Member Posts: 1,752
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    edited July 2023

    Cletus - Henry? I want to say how sorry I am that you are joining this club that no one wants to need. We each came here for the same reasons you did, and are sharing lessons learned, tips, and encouragement.

    First thing I learned was something called anosognosia. She's not in denial - she really has the brain damage in an area that prevents her from knowing anything is wrong. My DH has that too. It makes it a little more tricky for those of us caregivers to work around, but you can do it.

    Think about how you know something, maybe at work and someone keeps gaslighting you, telling you things that make no sense at all, and even arguing with you about it. That's how it feels to your DW right now. We are the ones that have to get an attitude adjustment and stop trying to force them to agree. I learned it would be like telling someone who couldn't swim and was drowning to just stop it. (Just stop drowning, can you imagine?) They can't, and no amount of our willing or demanding they do it, will save them. We need to swim alongside them and escort them safely to shore with no criticism and demands for what they cannot do.)

    Here is a link that may help explain better than my example. But just know it is a real thing, you are not crazy, and she is not either really. To avoid conflict, we learn it is best to learn as much as possible about dementias, get POA documents in place to make your decision-making easier as her disease progresses. It helps to get a diagnosis if possible since some meds to help with behaviors are different based on which dementia she has. That is also why its important to stop confronting her. We use workarounds and half-truths (or whole lies when necessary) to get our loved ones (LOs) with dementia to the dr., to stop driving, to take meds, accept in home help, etc. without riling them through the direct way. It felt uncomfortable to me at first, but after a few clashes like you are describing, I followed the advice of our forum mates here and it was SO helpful.

    Wishing you well despite all that is going wrong. We get it. We are all in the same leaky boat here, bailing water and trying to keep our LO loved ones and ourselves safe.

    Anosognosia and Dementia - AgingCare.com

    Compassionate Care Strategies Using the 7 ‘A’s of Dementia - VHA Home HealthCare

  • M1
    M1 Member Posts: 6,722
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    The above is excellent advice Henry. I understand the feeling and remember those early stages. You have to quit trying to reason with her, and this is hard: because your natural instinct is to engage with your spouse, and now you have to learn not to. And that means that you are already losing her, in a fashion, and moving away from her in your own mind, and that changes the relationship from balanced partnership to caregiver/care recipient.

    Does she have a primary care doc that she likes and trusts? That person could be an ally for you, at least in terms of doing some basic things to rule out anything treatable (generally done with blood work, and brain imaging). Reporting of the symptoms should come from you, and in writing--she doesn't think anything is wrong, and this is common: it's when the families complain that the docs know they are dealing with real disease. With my partner, we did some brief medication trials (Aricept, Namenda) through our primary care doc, both of which had intolerable side effects. We didn't do any more than that. These days the calculus is different because of the new meds--but if she won't consent, it's probably a moot point.

    If you read a lot of threads here, you will learn a lot about how other folks cope and it will help, I promise. It also gives you support that she can no longer give you---and that is also part of your loss, and so, so sad, I know. We spousal caregivers end up doing many things out of love for the person we used to have a relationship with. that's the long and short of it. This is the for better, for worse and til death do us part--whether you ever took the vows or not, this is what it is.

  • Davegrant
    Davegrant Member Posts: 203
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    edited July 2023

    Cletus: I am thinking what I could add to what has been said. My wife also has dementia and anosognosia and I have a difficult time understanding the changes that are happening in our relationship as a result of the dementia. Even our arguments were compounded by the dementia that affected her personality. My wife wears hearing aids and poor hearing makes everything more difficult. I learned that she was powerless over this disease, and I was the one who needed to change. I am changing by reading all I can about the disease and reading the posts to see how others have handled these situations. I also go to support groups and learn from others in person. I can see that what I am learning is making the best of a tough situation. I learned to live one day at a time as I never know what problem(s) the day will bring. Some days its two steps back and one step forward. I have been doing this for six years and I am still here.

    I welcome you and encourage you to ask questions and people will respond. You are not alone.

    Dave

  • jfkoc
    jfkoc Member Posts: 3,767
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    You have gotten some wonderful information that will be very helpful

    I would, as a person with a hearing problem, like to address that issue.

    Please, when talking to your wife first make certain that she is aware you are speaking to her. Face your wife so that she can do some lip reading and then talk in simple sentences, slowly.

    Also a good idea to have her hearing checked by a Dr not an audiologist.

  • vjw
    vjw Member Posts: 13
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    OMG!

    I can so relate!

    My husband has Alzheimer's and Anosognosia.

    He was diagnosed in 2020, looking back to 2017-2018, the signs were there

    He is also hard of hearing, took the test, received the hearing aids and refuses to wear them because according to him, he can hear just fine. If I can get him to wear them even for a few hours, it's a win-win. Otherwise, my days are spent repeating to a person with short term memory loss who's hard of hearing.😵‍💫

    I am learning my way as we go through this disease. Confrontation does not work. I am also using workarounds and half-truths & whole lies when necessary.  Personally, I am finding the less my husband knows about certain things, the better for me. Simply because he tends to focus and dwell on things non stop.

    Dr appointments seem to go well. Neurologist appointments go ok, he will refute everything I say. In his world (mind) everything is fine and dandy .. me, not so much 😟

  • Cletus
    Cletus Member Posts: 5
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    Thank you very much. That was very helpful. I am Henry. Cletus is just a user name. I don't know what I'm doing with most social media platforms. I don't even have a smart phone. The DW won't allow it! (among other things). If she walks in the room I have to suddenly stop and close everything out on this web site and pretend I was looking at something else. We only have the one computer. She is almost a Luddite. Not me.!

    Got to go!

  • CStrope
    CStrope Member Posts: 487
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    Before my DH was diagnosed we thought he was having hearing issues, but he actually was just not understanding what was happening. It was easier for him to just look at us and say that he didn't hear what we said than for him to admit that he wasn't understanding what we said.

  • toolbeltexpert
    toolbeltexpert Member Posts: 1,583
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    I will second what cstrope said. I date my dw Alzheimers by when I got her hearing aides about 13 yrs ago. I used to think she couldn't remember because she didn't hear me. Now I know that was not the case. My dw faithfully wears her hearing aides and they do help with communication but not memory.

  • Cletus
    Cletus Member Posts: 5
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    Wow! I am new at this and I can't comment individually to all the replies I have received but I am very grateful. Thank you all. My DW is sleeping on the couch and if she wakes up I'll have to suddenly go. It's 4:30 in the morning here. That's how secretive I have to be.

    My biggest problem right now is trying to get her to go to a dr. She strongly dislikes her current primary care dr but she won't find another one. She tried for awhile ABOUT A YEAR AGO! She gave up claiming she can't find anyone in our plan. We have WellCare. I go to a lot of dr appointments in our plan. I am not crazy about my primary care dr but he does help w/ a lot of things so I take what I don't like w/ a grain of salt and just continue on. I do a lot of dr google searches. I go to a lot of specialists (that he refers me to). Some are good, some are very bad.

    But my DW is extremely stubborn. She has always been stubborn but now I don't know what's what. Is she becoming more stubborn because she might have alz or dem? (I haven't learned all the abbreviations yet, bear w/ me please).

    You guys are talking like she does have alz or dem. Am I reading you all correctly? Remember, she hasn't been diagnosed by a dr yet. How do I get her to go to a dr if she won't allow me to talk to her about it?

    A week ago I was seeing my primary care dr and I brought up the topic of my DW possibly having alz or dem. I unexpectedly started literally bawling right in front of him and the young intern he was training. I am a man, we don't do that, right? (tongue in cheek). He tried to offer me a solution to my problem of getting her to go a dr but since it was at the end of the session I knew he needed to end it so I just said "okay, I'll try", knowing that what he was suggesting wasn't going to work w/ my DW. He suggested me making the appointment w/ a neurologist (even if she gets angry w/ me) and if she didn't want to go to tell her to cancel it herself. Yeah, right.

    Ut oh. Got to go. She is waking up. Thanks again.

    Cletus.

  • harshedbuzz
    harshedbuzz Member Posts: 4,364
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    @Cletus

    You need to get her to a doctor for the preliminary bloodwork to rule out treatable conditions that have similar symptoms-- these can be things like hormone or vitamin deficiencies. These aren't common, but my dad's cognition improved a great deal when his vitamin deficiency was treated until he was unable to maintain the lifestyle changes/his Alzheimer's progressed. Imaging would be useful to rule out some sort of brain lesion.

    Since she's resistant, stop talking to her about this and just make it happen. Some folks use "fiblets" aka therapeutic lies to get their LOs to submit to care. One that often works is an appointment to get a refill for a highly valued prescription or as a requirement to continue Medicare coverage. Since she doesn't like her current coverage, maybe you could claim the appointment is part of the process to get a new insurance plan. Other folks have gotten a reluctant spouse to the doctor under the ruse that they themselves have an appointment about which they are anxious and would like the spouse to come as moral support.

    In any of these scenarios, you would contact the doctor ahead of time with a bulleted list of the behaviors you are seeing and any other relevant information. Bring a copy with you, just in case, to slip to the person who brings you back to the examination room. I used to sit behind dad at his appointments so I could discretely signal his doctor when he was self-reporting utter nonsense.

    I was unable to get my mom to push to get dad evaluated for almost a decade. This folly nearly killed her as he was unable to be her advocate when she had a medical crisis. She finally agreed and then dad had a recurrence of his prostate cancer which distracted them. I'd made an appointment at a memory center, but dad had a psychotic episode before that happened and we ended up getting him diagnosed during a hospitalization for that. #0/10 do not recommend. It sounds like your DW is pretty volatile; you could use that to your advantage as a nuclear option if nothing else works. Let her get really worked up and agitated over something and have her transported to an ER with a geri psych unit for a short stay and medication management. You'll probably get a tentative diagnosis and a calmer person who will agree to a full dementia workup.

    I would get her hearing checked. It might be improved with hearing aids. My mom's previously great hearing tanked in her early 80s. I can tell when she doesn't have them in or when her ears are clogged because she gets very vague and "low talks". Improved hearing might help. Or she might fight the process and not adapt to them or be to a point where her auditory processing is the problem.

    I would also suggest a smart phone, asap. Better yet, an iPhone and Apple Watch combo. These are the Swiss Army Knives of dementia care. I used mine to make short videos of dad acting out to share with his doctor when his meds needed adjustment. My friend linked hers to a motion detector that allowed her to know when her mom was getting up and headed out the door in the middle of the night. I can potentially track my mom from my phone. I can use my watch to find my phone (critical when dad was in his hunter-gatherer stage and was hiding stuff). My mom's watch detects falls, so if she went down and dad couldn't call EMS, the watch would do it automatically. Plus, much of what you can do on your computer can be right there in your pocket with you.

    HB

  • Gthoma
    Gthoma Member Posts: 33
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    My DW was also in denial and adamant about not needing to see the doctor. Finally, I had to trick her to get her to the doctor. Told her the appointment was for my bp and I wanted her to go with me then the doctor did some initial testing. Requires pre arrangement with the doctor. She was Hella angry but, with memory issues, it doesn't last long anyway I figured it was my responsibility to do what was necessary. Our kids agreed. If you have involved/close family members good to get consensus with them first.

  • Gthoma
    Gthoma Member Posts: 33
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  • ButterflyWings
    ButterflyWings Member Posts: 1,752
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    With PWDs it isn't denial - please learn about anosognosia. This forum introduced me to the brain condition called anosognosia that many (maybe most) of our PWD LOs have. That helped me understand why the direct approach will never work with my DH. Because his brain disease (dementia) does not allow him to know that anything is wrong. We are the ones who have to adapt and find workarounds to get things done. Good luck!

    Anosognosia and Dementia - AgingCare.com

    Compassionate Care Strategies Using the 7 ‘A’s of Dementia - VHA Home HealthCare

  • Cletus
    Cletus Member Posts: 5
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    That's all great information. Thank you very much. It will take me awhile to review what all you said and absorb it. Thanks again. Real name "Henry." Cletus was what I chose as a username. I basically don't know what I am doing most of the time on social media. All help in that regard is also appreciated.

  • StephaniM
    StephaniM Member Posts: 1
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    Henry - my family is dealing with the same issues with my Mom. She refuses to go to the doctor and she and my Dad are arguing anytime he corrects her or brings up that something’s wrong. We arnt sure what to do either. If my Dad takes her to the doctor and she finds out it’s to be tested, she will walk out and the explosion that’s coming after that will not be good. I’m hoping to get some ideas of how to help my Dad from this community. I wish you all the best.
  • Denise1847
    Denise1847 Member Posts: 836
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    Hi Henry,

    Perhaps you could stop mentioning the dementia/alz concerns. Instead just ask how she feels, how she thinks her physical condition is. Suggest that there are vitamin deficiencies, brain tumors, treatable conditions that can be resolved and that you want her to have a comfortable life. You take care of yourself and you just want her to take care of herself so she will be around.

    Even express the notion that you want to make sure she is healthy in case something should happen to you. What you think would motivate her to investigate her health is where you need to steer the conversation. You will have to clue the doctor in about all of the behaviors. Ask him to do a mini-mental assessment and order an MRI at the minimum. Suggest that you would even call for the appointment and that after the visit you could go to lunch together.

  • ButterflyWings
    ButterflyWings Member Posts: 1,752
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    edited August 2023

    Very sorry that we all are in this same terrible predicament with a disease that only goes one way.

    Stephani, please understand that this is not denial for our PWD loved ones, though. When I learned (in this forum) about anosognosia, which most often results from their brain damage, things made so much more sense. That helps us realize we with the intact brains must adjust our own behavior, not theirs.

    Denise's suggestions are good to ensure that you are not making things harder, unnecessarily.

    I even tried to imagine myself in DH's position. I guessed that even if I had full awareness (no anosognosia) I would not want anyone reminding me that I'm dying, losing my mind, and losing every capacity I have, with no chance for a cure. Then what would be the point of even getting out of bed ever again? Definitely would not want to hear it if it felt like they were gaslighting me and their statements did not align with my own reality.

    Here is the article again, that explains it. Anosognosia and Dementia - AgingCare.com

  • Ed1937
    Ed1937 Member Posts: 5,084
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    Stephanie, welcome to the forum. Sorry you need it.

    Put me down as another vote to read and consider Denise's post. There are many conditions that mimic dementia symptoms, and they are treatable, which means the symptoms may disappear altogether. But treatment needs to be started ASAP because if you wait too long, those conditions may no longer be treatable. I wish you luck.

  • carlog
    carlog Member Posts: 6
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    @Cletus Hi Cletus,

    When my wife started asking questions like "what's Hitler" I realized something was seriously wrong but she didn't (and still does not) accept that she has changed at all. I had to contact her doctor behind her back to lay out the evidence and to get her doctor to do a cognitive evaluation and an MRI.

    Ironically, I didn't like her doctor and had myself switched to a different one years earlier. Now I have to give that doctor full credit for handling the situation well. He waited until she had an unrelated appointment, got her to go though a preliminary cognitive evaluation (a questionnaire) and then got her to go to an MRI.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more