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.
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.
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.
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.
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.
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.
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.
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.
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.
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.