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Today I filled out the neurologist's intake questionnaire which I have to complete and send in before an appointment will be scheduled. My husband (67) was referred to neuro after I told his primary care physician what I had been noticing in him the past year or two (short term memory loss, inability to focus, nastiness, depression, combatativeness, forgetfulness, etc.). My husband failed several of the cognitive tests the doctor gave him in the office at his recent appointment. I filled out the questionnaire and consulted with my husband on much of it, which sent him into a minor fury as he says he will tell the neuro that he disagrees with what I have been noticing in him. I gave him examples and he denied them all. He said the "issues" I see in him are present because he just doesn't want to bother with things he just does not care about or are not important to him (even if those things are important to me or other people). He claims he ignores and "forgets" anything he is not interested in. He ended the conversation by saying that he is much smarter than he lets others know he is. Is this sort of denial common when dealing with patients in the early stages of cognitive issues? Because, if it turns out that he has just been "playing dumb" from disinterest or apathy these past few years....then we have a whole other problem to deal with. Lastly, this may or may not be significant but one of his doctors noted to another of his doctors in a letter, 7 years ago, that he felt my husband was at risk for vascular disease. We did not even find this out until last fall when we took his records to an endocrinologist that his PCP referred him to for depression, ED, fatigue, mood swings, etc. The endo did not find any problems in blood work done at that time.

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Yes, this is quite common. Think about it. Does anyone really want to hear that their brain functionality is failing? No, of course not. Denial is the first reaction.
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Hi Monica, you are describing something very close to what I went through with my husband. It’s very frustrating when you have to wonder if your husband is showing signs of real dementia or “playing dumb”. If he is having real dementia issues, time will show you that he truly is, because he will get worse. I doubt if he is just playing dumb, I had a lot of anger toward my husband because I thought he was manipulating me and just wanting me to do everything for him. He had a history of that. But he is now in the later stages of Alzheimer’s disease.
The fact that your husband did not do well on cognitive tests also is very suspicious—who would want to make themselves look compromised in front of a doctor?
There is an excellent documentary about Glen Campbell that was made a few years ago, I hope you can get hold of it and watch it. It is called “Glen Campbell, I’ll Be Me”. It shows him in the neurologist’s office at the Mayo Clinic saying he doesn’t know the date, time of year, etc because he just doesn’t care about those things. But it was just denial, which is normal.
When you go to the neurologist, he will probably interview your husband first. Let your husband have his say. He will probably also test your husband. My experience with every doctor has been that they listen to the patient first, and then ask the spouse’s opinion. The doctor will listen to you and believe you, and you will have support from that. If your husband shows signs of dementia, it will not get past a neurologist.
Good luck on your journey, I wish the best for you and your husband. I hope this has helped.
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My husband was relieved to have the diagnosis of Alzheimer's. He said it gave a name to what was going on in his head.
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jfbctc May 2019
Hi MaryKathleen,
I too was relieved when I got my diagnosis. I thought finally, I know I'm not making things up, I know I'm not crazy. Thank you for sharing your husbands thoughts with me.
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I write from the patients perspective. I began noticing I was losing my ability to memorize things back in 2011. I brought it up with the doctors, continually for just shy of 5 yrs. I was told, I was under too much stress, sleep apnea, which I'd been diagnosed with 15yrs before then, etc. I was having trouble learning new airline reservation systems (travel agent 38yrs.) I had soaked that information up easily for most of my career. Then, in 2016, I was fired from my job, for failure to meet goals. Then the doctors took note. MRI, neuropsych exam. Bingo at just shy of 57, early onset ALZ. I never denied my troubles. Finally I had an answer and that was three years ago.
My point is that if you have family, pointing out their own difficulties, and you are told, not to worry, push for more testing. Now, just before my 60th birthday, I'm looking at being 8yrs down the road already, and I keep bringing up differences I notice. I know I'm declining, and people around me keep saying, quit being a pessimist. Denial can come from the other side of the coin. I saw this happen to an uncle and my stepfather. I knew something was wrong. I still know what is going on now. Family be bold and advocate for your family member that believes they may have a problem.
Fortunately for us, my DW and I were doing retirement planning when I was diagnosed and all of the legal issues have been taken care of. I am grateful, for the three years I've had really enjoying life and the relief that has come from having a diagnosis. Yes, memory problems can develop at a very young mid life time of age. Don't put off the things you want to do until retirement. One may not be in a position where they can enjoy it. I am never bored, but there are a lot of things I can not or shouldn't do and I accept it. I pray, that the coin doesn't flip on me, and that I begin a stage of denial. Perhaps this is not an appropriate response to the question, but it had me wanting to bring forth these thoughts.
The sky is blue, the sun is bright, and we woke up breathing. Be kind to the pensioners, if your lucky one day you may be one.
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New to this site. Have been reading posts on several subjects for weeks. Can relate to a lot of them. My mom and dad have been in independent living 3 years. Moved them out of their house due to my mother's declining mental and physical state. She has been in denial and argumentative for years. As she declines her poor hygiene and "nasty" personality have become exhausting for my dad to try to deal with and too hard for me to handle as the caregiver/daughter/POA. I am just now proceeding with the MD evaluations to get a diagnosis and move her status to "needs assistance". She is irate, resentful, mean, accusing, and probably scared. My grandmother and aunt both had dementia and became too much for the family to handle. When my mother and aunts were dealing with my grandmother they were understanding but insistent, sympathetic but firm; doing what they knew was best for their mother to get good care. My cousins have counseled me that the sooner I get trained, compassionate staff in a facility that is equipped to care for my mom; the sooner she will accept her limitations and get the professional help she needs. Which will lift the burden from the shoulders of my dad and me enabling us to enjoy her, encourage her,  and become her family once again. I hope this will be the case for us and encourage you to keep seeking for help. Our journey has just begun, and so has yours...
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While some people clearly realize something is wrong (read about these in posts asking what to respond when the person asks what is wrong with them), I would suspect most will be like your husband - denial. Hopefully he will go to the appointment, but at the least, send in the form.

If we mentioned anything about forgetting to our mother (early 90s at the time), she would just say she is old and is entitled to forget things once in a while! Sure mom, but the problem is you are forgetting what you are forgetting!

Repetitive question/statements were the first real clues. Some issues were apparent after the fact. Others appeared after I realized what the issue really was. However her ability to understand that she is NOT independent, was NOT able to cook and was NOT able to really care for herself was absent despite this being her mantra. She still pretty much can take care of herself, but for safety reasons we moved her to MC facility. She was not able to stay in her home (we brought in aides initially for 1 hour sanity/med check, but after a few months she refused to let them in, citing her mantra again and again!) She didn't even have enough sense to know the wound on her leg was BAD, never told one of us, only the neighbor, who reported to me that mom had "bruised" her leg. It was actually cellulitis, which would have killed her!! It was found just before the move and had to be treated for a bit before we could move her - treatment continued and took about 2 months to clear it up!

So long as he is willing to go to the appointment, I like Countrymouse's suggestion that you have TWO questionnaires filled out, one by you and one by him. When people are in denial, I don't even think hearing it from the doctor is going to help. When ours mentioned to mom it wasn't safe for her to remain in her home, she got REALLY nasty and wanted OUT of the office! No dementia or cognitive issues were even mentioned at that point. We don't use the D word or anything like it when visiting. She won't understand or agree. She has drifted back in time now (into year 3 at MC.) We all (staff included) have to get creative when responding to what she wants us to do (contact her mother/parents, go home which is a previous home now, get out, etc.)

Now is the time for you to learn what you can about cognitive decline and how best to deal with issues when they arise. This includes not only understanding what to expect, but how to handle them. For instance, when he denies, don't argue or pursue the discussion. If he gets things wrong, don't correct him. You can avoid a lot of frustration and potential anger by trying to 'go with the flow', or changing the subject to something benign.

Since he was thought to be a candidate for vascular dementia, it might be that, but you really need to know for sure. Depending on what the doctors find will determine the path(s) you can expect to traverse. Even with a definitive Dx, not everyone follows the same path or experiences the same symptoms, but arming yourself with knowledge will help you if/when you encounter them. Every person experiences cognitive decline differently, even among those with the same type, as each person is unique.
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If someone where to tell you, you are slipping, forgetful, foggy, and clearly have all the signs of dementia, would you agree????? NOoo you would adamantly deny it and be mad the person is pointing that out.
Why bother to point that out? What good would that do? What is the real goal? It would only make the person scared, paranoid, combative, upset, angry? Its a pointless conversation, or rather argument you will be having.
Why do that to a person? In moments of clarity THEY KNOW. That is why they get argumentative, say they dont need to remember these things.
They cant change the diagnosis so what is the point of telling them they have that awful disease? How could they change that? Can they get smarter, snap out of it? Carry a pen and paper with them to remember? They would forget the pen and paper.
No point telling someone they have dementia. Its cruel. You just try to work around it. They cant change the problems in the brain, or no one would have dementia. Its just cruel.
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Monica, before I read these responses, I was going to say I don't know if it's common, but it certainly is valid. My mother did the same exact thing. And the same thing as paulat585 above this response.

She says she's fine - doesn't matter she doesn't know what she had for breakfast. It's denial based in fear. But as another poster suggested, look up anosognosia. The behavior is likely a common reaction and indicator that something is wrong.

I wish you luck. I wish us all luck.
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My significant other has vascular dementia. Denies he has any problems. Common statements from him are: "I'm retired, so I don't have to know the day/month/year," "I don't care about that (something that is really important to him), so why would I remember?" This has been going on daily for 12 years. With each memory failure he acts as if it is a one time only problem. Doesn't remember that it just happened an hour ago. Is surprised when the same thing happens an hour later.
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faeriefiles May 2019
I would probably be the same way except I'd point out that I have never been able to remember today's date, people names etc. I was born air headed when it comes to details.
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Is this a change from previous behaviour in his life, or do you think that because you are both getting older, and possibly you are expecting changes as you do, that you are noticing it more or it is bothering you more?
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I believe denial is on everyones plate. As noted in another response, no one wants to have age issues or think they are old. My brother was in denial for many years. We did discuss his dementia with him. He was a little snippy in the early stages, but now he accepts it and kind of understands it. The other day someone asked him how he was and his reply, "I am doing great, but they tell me I have dementia. I think I might because I always forget things". He is in advanced stages now - no violent behavior unless he gets backed into a corner by the aids or nurses. Then he just yells - he has not struck out yet. Some times he just doesn't want to go with the program of the day...
I think you have to weigh out the persons personality and stage of dementia in order to discuss it without creating fear. They know something is wrong, but can't figure it out. I found with a lot of love and interaction my brother accepts his fate... There is a class on dementia that gives you a reality box you strap on your head. It creates everything a dementia patient goes through. I think this should be a mandatory class for all caregivers and family. It was an eye opener to actual live this disease for an hour or how ever long you can take it.
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Daughter2951 May 2019
Explain the reality box, please.
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Do you not see the irony in expecting a person with suspected dementia to have an accurate understanding of his dementia and an accurate recollection of telltale events?

If it's not too late, I'd duplicate that questionnaire, let him do his version, and submit it alongside your version. The discrepancies themselves will be revealing.
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Google bv FTD, it is a rare type of dementia that starts at a younger age, is usually in men, has personality and behavior changes, lack of empathy and denial are key indicators. Usually the wife notices changes first and the husband acts just like yours is doing regarding lack of insight. You need to get it correctly diagnosed as the medications used for ALZ and other dementias make bvFTD worse, not better.
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Carolyn17 May 2019
I was going to mention that my husband has bvFTD as well and during the beginning months of bizarre actions on his part, every time we went to a doctors office for a consult he would be more than eager to tell the doctor that I was the one with the problems. It took 2 years to get a good diagnosis, since his original doctor labeled it Alzheimers. A diagnosis is your best bet at getting the proper care for your husband. None of the medications for Alzheimers worked with my husband. Denial is very common in FTD patients. You tube has many dementia research documentaries that are very interesting. Getting a diagnosis is key though.
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Any thoughts on what to do if your parent absolutely refuses to see a doctor? She is able to live a miserable life safely right now with my Dad but getting a little worse every time I see her. Unfortunately, haven’t been able to get a medical POA.
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shb1964 May 2019
Sticky situation you're in. It's ideal to get DPOA and healthcare proxy BEFORE a person is declared incompetent, but if they don't see there's a problem (or won't admit it), that can be impossible. You'd be left with pursuing legal guardianship, which is no picnic. I feel for you.

My mother refuses doctors, too. She is now in a memory care facility (for life) because on Jan. 11 of this year, I tricked her and lied to her (yes - there is guilt for that, though pointless), and asked her to accompany me to a doctor's appt and then we'd go to lunch. Well, it was a whirlwind of activity. The doc knew of her from a prior hip break (2016) and was a tremendous asset. His office set up transfer by ambulance to a hospital to check what was likely a broken bone in her leg, She stayed there (kicking and screaming - literally) until another ambulance/shuttle transfer to a rehab facility. More kicking and screaming. From there, another transfer to this memory care facility. It has been a really crappy few months of this year.

With some anti-anxiety meds on board now (she's refusing those about half the time...long story or you can see other posts about how in the state of Fla, aides in the care facility are legally forbidden to slip the meds to her. They must get her permission - impossible given her compromised mental status. But that's when laws impede logic...another story).

Bottom line, you may have to trick her to get things underway. It will suck and you'll feel like the world's worst child. But you are in good (but sad) company. Good luck to you.
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Sometimes it's so hard to trust modern medicine. My dad didn't want to tell the Dr anything either.
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Look up anosognosia and confabulation. This takes some pretty wild turns at times.
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I would think that defensive excuse making is common in all of us. None of us want to be held up for examination of our mental capacity. Just the idea that we may have some horrible disease that is going to rob us of our identity is usually enough to set off all the defensive alarms. Add to that the idea that a loved one who is supposed to defend you is seemingly working against you and you have the perfect recipe for depression, anger and defensiveness. See?
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Monica19815 May 2019
Yes.....I see. Thanks for your response.
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What you need to do is have the doctor sit right in front of DH and tell him he has Dementia. He will tend to believe it from him than you.
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MJInslee May 2019
That's one method. But my husband's doctor is his golf partner, YMCA team member, etc., and he is in almost as much denial as my husband! He reluctantly ordered an evaluation because a RN from recent hospitalization suggested it, but said "Those are worthless"! I agree about believing what the pros/MD says, when not accepting info from the wife/spouse. Thank you!
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I think denial is very common, especially regarding any illness related to aging such as dementia. Ur husband sounds like my dad actually. Nobody wants to be perceived as old and there is also the driving issue. Most ppl don't want to lose their license either so they make excuses and find any and everything to blame whatever on so it won't seem like they shouldn't be driving.
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