My husband gets very hurt and angry if I imply he has dementia. (A result of hydrocephalus) Is this normal and how do I deal with it?

As much as you can, make accommodations for your husband's abilities without labelling or explaining his situation to other people. Preserve his dignity. Most people catch on right away to the situation and will make their own accommodations. Over-explaining may be an attempt to excuse yourself from being responsible for any of your husband's inappropriate behavior.

Hydrocephalus and dementia are 2 very different diagnoses. Both can cause confusion. In the case of hydrocephalus, higher pressures in the brain can cause confusion. Good days are the result of "good pressures" in the brain and bad days are the result of "higher pressures" in the brain. Medications and lifestyle changes can help manage these problems. Dementia is a progressive deterioration of mental capacity caused most of the time by stroke, Parkinson's disease, or Alzheimer's disease (the most common cause). Medications can slow progression for awhile but in latter stages are ineffective. Please have your loved one evaluated for dementia before using the term to apply to his mental capacity.

If he does have dementia, refer to the diagnosis according to the cause when explaining to others. Ask your loved one how he/she would prefer you to refer to his/her cognitive issues and act accordingly. You want to be truthful to others but also be respectful of the wishes of your loved one. Err on the side of being kind.

Understandable from both your perspectives.
To help him maintain his dignity and self respect it is best not to speak about deficits , diagnosis etc to other people in front of him. He already knows and is grieving his deficits even if he cannot fully express them or himself.
Maybe an example might be : instead of saying now you know you cannot do that or why are you doing that it's going to hurt you; try saying something like, can we or how about we try it this way ? Or redirect in some positive way. This takes energy and effort.

Try to practice good self care for yourself , get help in the home so you can get away a bit regularly.

Speak with his PCP and have a Geriatric Case Manager assigned so they can better assist you both towards improving quality of life for you both.

Blessings

Doctors cannot discuss a patient's care without their permission. They can receive information from you although they may discuss it with the patient. My guess is his doctor will be careful because of your husband's diagnosis. You. might suggest that both of you are getting older and might each give permission to discuss your case with the other's doctor. In fact, one should have some such permission in place no matter the circumstances. It might be helpful also to point out times when you are forgetful, confused etc. in front of your husband. It sure happens to me, and he might not feel so alone or defensive.

Put yourself in his place. You're not protecting his dignity. Don't talk about him to other people especially when he can hear you.

I wouldn't tell friends much of anything, frankly, because people like to get the dish and then gossip.

In any relationship, if you know that something you're doing is hurting the other person, then you should stop doing it.

In my opinion, that's how you deal with it.

Do not imply he has dementia to anyone in front of your husband .
You will have to explain it without him there or discreetly hand a card saying “ my husband is a dementia patient “.

ChoppedLiver has excellent ideas how to interact with your husband.
I do want to add though that not every dementia patient will admit they are having a memory problem , or some that do , often will later on deny it as the disease progresses .

This is a very hard stage of life, both for you and for him. He doesn't know what he doesn't remember. You pointing out what he doesn't remember, just irritates his pride in who he is. If he can't remember, then what else is he not remembering? He can no longer trust who he is and the world around him, then anger takes over and disgust, then depression.

What you need to do is to help him build confidence in himself. Once he builds confidence in himself, he will feel confident to admit that he doesn't remember everything (which he never did before...and it is just a bigger amount now.)

How do you do that? You always talk as if he had all his memory. When you are in a group, ask him questions that you think he can answer. When he says "I don't remember that"...then you try to build some association from what you think he may remember to the current topic. Don't start too far back or he will accuse you of mocking him. And last, don't rush the memory association.

Can he still read? If so, if there is a large amount that he can't remember, write it down for him so that he can digest it over and over again and attempt to commit it to memory.

Now is the time for you to show him lots of patience. Once he gains his own self confidence enough to admit that he has lost quite a bit of his memory, he will be looking for someone to not make him look stupid in front of others....and this is where your patience will be rewarded. You can become the only one he will trust.

However, right now, he does not trust anyone. This is normal. You need to help him feel confident to face the new world that his life's journey is taking him.

I had to look it up:

What is hydrocephalus?

Hydrocephalus is a neurological disorder caused by an abnormal buildup of cerebrospinal fluid in the ventricles (cavities) deep within the brain. This excess fluid causes the ventricles to widen, putting harmful pressure on the brain's tissues.

My question to you: Why do you tell him he has dementia?
Instead of talking to friends 'in his presence,' which, of course, will embarrass him, share as you wish about his diagnosis privately.
Why embarrass your husband?

Do not continue to explain ... to him.
What is the point to do this?
He is frightened, scared, fearful - likely anxious, depressed and then some.

What he needs from you is kindness and reflective listening. That is all - and that is a lot as is shows compassion towards him.

If he (keeps) asking you "what is wrong with me?" (does he?) - tell him "we'll discuss with your MD next visit." Stop explaining. Focus on keeping him as calm and even emotionally as possible. This has to be extremely difficult for him (too - as I am sure it is for you).

To tell someone they have dementia shows me that you do not understand what that means, what it means to a person who has it (lack of sensitivity due to being uneducated perhaps). Instead, you could say - if you need to say anything at all re diagnosis, refer to forgetting. We all go through it.
Then change the subject: Can I get you anything?

If you are overwhelmed, get help(ers) so you can take breaks.
I do not know much about your situation based on what you say here.
How long has this been going on?
What does he actually do?
What do you do with him? (caregiver? more?)
How long together?
How was the relationship before onset of this disease?

He is right, he isn't a moron - although he feels very 'small' and like he is nothing when you talk ABOUT him in his presence. Stop doing this. Develop more sensitivity. Put yourself in his shoes.

Get support for yourself.
You cannot do this alone.
Find an Association specializing in this area / ask for support / a support group.

I've been working with elders who are inflicted with degrees of dementia. Different parts of the brain are affected with declining cognitive functioning, as well as various manifested behaviors and communication abilities.

What I have learned from everyone - regardless of if they are quite functional to advanced dementia?

Treat everyone as a 'real' whole person.
Do not talk down to them.
Listen.
Respond to them where they are (not where you are).
Be honest as possible. If they ask a non-sensical question, say "I don't know, I'll have to think about that and get back to you.'
Smile.
Agree as needed (no arguing).
Set boundaries (learn how to do this and feel grounded in your decisions, although know you need to be flexible, too).

You do not want to add to your husband feeling emotionally and psychologically 'less than,' / 'small'. He is having a difficult time as it is and he needs you on his side. If you cannot do that (yet), lessen the time you are there as is possible (get caregivers in if needed), and get the support you need. Balance your life with caring for him.

Thank you for asking. This is a first step.
Stop talking ABOUT him in his PRESENCE.

Gena / Touch Matters

LNorman: Perhaps no individual wants to hear the word, 'dementia' since it is depressing. Avoid it.

The same thing happens with my husband. It feels like an insult which is why so many people live in denial and don’t get help. I found there is no need to use the terms “dementia” or even Alzheimer’s in his presence. He is ok with a “cognitive problem” and sometimes with an “an ailment”. I got some cards that are printed “the person I am with has Alzheimer’s. Please be patient. “ which you can hand to someone if needs be. Otherwise your husband doesn’t want to be insulted and you know how often the term “demented” is used as an insult.

Why label it? I have been taking care of my father for close to 5 years, Although the DRs told him the diagnosis he did not understand and I did not ever called that again. All I say is that he has some cognitive decline due to a frontal lobe meningioma.

dementia historically unfortunately has a connotation that is hurtful and it is an automatic push back.

If he is aware and cognizant of the hydrocephalus diagnosis just simply say something like ….. he has some cognitive impairment due to the hydrocephalus.

best wishes

My husband just informed me that he "prefers the term Alzheimer's to Dementia."

Also, when hubby told me he didn't really believe his diagnosis, I asked his neurologist to put it in writing so that he could refer back to it when he was in doubt.

Mental issues are much more difficult than physical issues. My mother refuses to believe she has a mental illness and stopped taking her prescription pills for bipolar. When I ask her to take them she accuses me and her doctor of trying to drug her up. Unfortunately, medication for mental illness often comes with side effects that deter people from continuing to take them. I think dementia is similar in that respect. No one wants to confront the reality that they are in mental decline or that the things they are seeing or hearing aren't really there.

My aunt became very, very angry at my cousin who lives close to her when she discovered she had it, and told her. She didn't trust her anymore. When I would visit aunt and spend the weekend with aunt, she would be up all night fussing about my cousin saying she caused all of this telling everyone she had dementia, and she was going to get her for it. All night long fussing she didn't have it. It's a lie, and she was going to get my cousin for spreading the lie.
It seems denial to me. She still insists there's nothing wrong with her. :-(

I also have a question how do they Diagnose Dementia is it with a brain scan or just a written or memory test for the patient? My mother has been on Xanax for many years and I do know that is one of the side affects. She is forgetful but not like many others are describing. She has a pacemaker so they could not do a brain scan. Thank you

I think it's a mistake to avoid the word, "dementia."
From the start and original diagnosis, we have called it what it is.
She is aware of her condition and, being aware and knowing it, makes it much easier to deal with.
It doesn't become a ...shock (or insult)... to discuss her ...DEMENTIA!

I've yet to learn of situations where "AVOIDANCE" is recommended.

Well, maybe driving off cliffs or such.

Is the hydrocephalous chronic or was it an acute condition that has been treated? Talk to his neurologist about the degree of brain damage. That will give you an idea of what to expect. If his cognition is waxing and waning, he may need a shunt revision.

Depending on his age and the degree of damage he might improve with multiple therapies (OT, cognitive, visual/perceptual training).

You also need to be taught how to deal with his medical and cognitive issues. A general therapist will be a waste of your time, so work with a neuropsychologist or at least a social worker trained to deal with brain damaged patients. They can also talk with your husband and teach him how to compensate for his functional limitations.

In addition his depression needs to be treated. This may include environmental changes, light therapy, nutritional support and medication.

The words I used with my husband instead of "dementia" were "mild cognitive disorder". If he said things like, "What is wrong with my brain?", I would explain that he had been diagnosed with mild cognitive disorder and it was affecting his memory and problem-solving abilities. By the time it became "major cognitive disorder", he was no longer asking questions and did not have a clue what was going on around him. God bless you as you go through this "long goodbye". It's a difficult, hard journey.

You deal with it by not throwing it in his face all the time, and not talking about him in front of his friends, family or doctor.
I mean how would you like it if he talked about you like you weren't there in front of your family or friends?
Your husband is more than aware that he's having issues and he doesn't need a daily reminder to make him feel even worse.
The best thing you can do now is to educate yourself more on this horrific disease, so you know better how to care for him. The book The 36 Hour Day is a great place to start, along with the many great videos and books from Teepa Snow(a dementia expert).
And with his doctor you can go on your husbands patient portal and send his doctor a message about everything that is going on prior to any of your husbands appointments. That way his doctor knows ahead of time the issues at hand and you don't have to talk to his doctor in front of him.
I had to do that ALL the time with my late husband, and his doctors always appreciated me doing that.
You can also just hand his doctors nurse a hand written note with all of his issues before his appointments as well if you don't do the patient portal thing.
Bottom line...be respectful of your husband and his disease. He already feels bad about it I'm sure.

If he's forgetful, what is the purpose of him reliving his sad diagnosis every day? Don't do it.

Redirect the conversation, transition into an activity (distraction). Try to find things he can still do.

Maybe talk to his doctor about meds for his depression. It won't get better on its own and he is no longer capable of getting himself to a place of acceptance and peace. Meds will help both of you.

I learned a lot of great coping skills and strategies from watching Teepa Snow videos on YouTube. She's an expert on dementia/cognitive impairment and caregiving. She gives excellent tips on how to better engage our LOs for more peaceful and productive interactions

Don't speak to anyone about DHs dementia when he is in earshot, that's my advice. He has what's known as anosognosia which is when a person doesn't believe or accept that they have a health condition they've been diagnosed with. An understanding that the person is not in denial, stubborn or apathetic about their circumstances can lift a heavy weight off their shoulders, and yours too, actually.

"Dementia" is a word that has a very negative connotation associated with it. It makes your hubby (DH) think he's a "moron" or "nuts". My mother suffered from anosognosia for the entire 6 yrs she had dementia so I never used that word with her. I'd tell her she was having some memory issues due to her age, as we all were. I felt no need to expand on the "truth" bc she didn't WANT the truth.

Only when the student is ready will the teacher come.

Best of luck to you.

Be certain he knows that the help you are hiring is YOUR help, people to help YOU because of your inadequacies (hee) instead of his.

When he has lucid moments is the only time you can answer his questions. Give him a list in writing of the things he HAS that are "hurting" his brain. Let him know you are there for him and you are sorry it happened to him, but that it is no fault of his and you two will "get through it".

My own brother, when diagnosed with "probable early Lewy's Dementia" by symptoms he explained to his doctor WANTED to be fully informed and to talk about it. He said he sure wasn't happy to know the downward trajectory ahead but that he sure was happy to know why he saw the world differently than once he did. That it was a comfort to know there was a REASON. However, his reaction was rare and may not have lasted if he had lived long, for denial and anger and fear are the more common reactions as you can imagine.

Sadly, not everything in the world of dementia can be fixed. Some things just have to be got through the best way you can, and I sure wish you good luck.

I wouldn't say anything unless it is absolutely necessary. Have a card ready if he starts acting out, hand the card to the other person, all it has to say is Dementia Patient.

Men have huge ego's they are the fixers, if he admits this, he will have to figure out how to fix and he can't.

Eventually, it won't be an issue as he will continue to sink in the abyss of dementia.

Sending my best to you, this caregiver thing isn't for the weak and unprepared. Keep posting, it will help!