He has his lucid moments, but mostly he is very forgetful, confused, and depressed. If I try to use aids, try to talk to his doctor, explain things to friends, etc. he gets highly insulted and hurt. He keeps telling me he is not a child or that he is not a moron.
"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.
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!
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.
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.
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
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.
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
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.
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
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