What do I do with my dad who thinks he is incontinent but really is not?

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Has anyone experienced this situation?
Dad had spinal fusion surgery 2 yrs ago. Threw him into frontal lobe dementia.
Shortly after returning home after surgery and rehab, he was sure he was incontinent.
For a year he wore diapers and pads and carried on something terrible.
Finally his eurologist took me aside and told me that Dad is not incontinent...he just thinks he is.
Recently I met a young man who had broken his neck 10 yrs ago, was paralized from neck down....but is now walking, etc. When I mentioned Dad's immaginary problem, he said he knows about that, has that sensation also...but because he doesn't have dementia, he knows it isn't true. Said it is from spinal injury.
I am thinking I should take Dad to a different kind of doctor...maybe a neurologist?
Or a shrink?
This sensation is very real to him and he avoids leaving the house for social activities, in fear of embarrassment from leaking....which he isn't.
I am the 24/7 caregiver for both my parents...have moved from out of state to live with them. Feel like a caged bird. But this is the right thing to do for them, they could not make it without me. I read all the posts I can and understand.
Dad also has leukemia and Mom's kidneys are not working well, but she is mentally sharp, can't walk well, uses a walker. You get the picture.
Anyhow, does anyone know about this sensation that Dad has and can you give me some advice...thankyou.

4 Comments

Are you sure this isn't a UTI? I am just now getting over a bladder infection, and I swear it makes you feel like you have to go when you don't. Could it be making him feel like he's already gone or has to go to the bathroom? Just wondering I guess.
Nope, already considered that..but thank you...was a good suggestion.
It is a sensation of feeling wetness. He thinks cool sheets are wet example.
Last night he went into hospital...has swollen lower legs/infected.
His primary doc wanted him to go in day before, but Dad refused. Now we can get a phscologic (oops) test done and him legally incompetant...Mom has his medical poa, but unless he is legally confirmed she can't make him do anything.
He will also have a slew of other tests while there. His doc wants to put him into a dementia facility and needed him in a hospital for 3 days to do that.
Doc says he is trying to help me by doing that. But I don't think now that I can have him away from me. Makes me cry and feel sick to have him taken away.
For the past 2+ years I have lived with them and been 24/7 caregiver for both of them. Broken backs, leukemia and frontal dementia. I'd lived in a different state before and had come down for his back surgery....Mom feel the day after he returned home and broke her back. Had to stay...my life disappeared that moment.
I think I can still take care of him and he is so dependent on me and is like a little boy. He said the other day out of the blue sweetly..."I am afraid they are going to take me away from you and not let me go back home" he said that while we waited to see the doctor....he sensed it it seems.
Caring for him isn't terrible...he is so sweet and tries to still do things. Most of my anger is towards Mom....she doesn't want to do anything...like for herself or for him. I told her I feel like cinderella. She has always been a princess and now is making the most of the situation. As always she doesn't want to do anything but sit on sofa and read newspaper or clip coupons that I never get. If there is a social activity she's ready to go....but help around here and she is moany and too tired. She has me and knows I will do what is needed to keep them going. I do this all mostly for Dad... I am 63...they are 82 + 84.
It would be nice maybe....if Dad went to a special dementia facility and could feel safe and enjoy it....they could maybe help him find things to do. Around here I am cleaning and cooking and running to shop or doctors. Not much time to entertain him. Had him peel carrots the other day....was funny....gave him a moment of success. Figured how bad could it be....so what if the carrots look funny.
Excuse my rambling...I am deep in my feelings and thoughts and no where to vent. Only getting about 4-5 hrs sleep and have to get back up to hospital with Mom in tow.
From what I've heard, the memory care places are the best for people that have dementia/alz. Their main goal is to keep their patients occupied and busy interacting with other people and activities. At least the good ones do. Which leads me to remind you to check out more than one place if you can. Just like nursing homes, not all are created equal I believe. As far as your mom is concerned, she's a prima dona and probably always has been. So your dad deserves a purple heart for dealing with that attitude all his life. I know you care deeply for him, but maybe getting away from his wife's uncaring attitude isn't such a bad idea. You think?
I think yes....he'd wanted to get away for years....but they couldn't afford to. He loves her, but had a bad situation...kept trying to make the best of it. A divorce would divide assets leaving neither of them able to live a secure life. She never had to know anything about finances...just spend the money like it's no problem....hoarding. She was a closet alcoholic and abusive mother. Was a Miss Guam during WWii and her looks and clothes are only important thing still.
Am now ready to go see Dad....but she isn't ready....wouldn't get up this morning and is now still getting all dressed to the nines and putting on her makeup...like it's a social event.

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