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I ask him to always let me know when he has to get up to go to the bathroom, just usually in the morning, he can walk slowly with a walker but does not get around good, might fall. I will leave the room just after he tells me he is okay, (uses urine bottle by the bed only gets up for #2) immediately after I leave the room, I hear him banging around trying to get to the bathroom, when I ask him why he didn't call me, he just stares at me like he doesn't want to respond or doesn't know what I am talking about? Is that dementia, what stages, he just started doing this. Also, just stares at the TV not really watching it but flipping it a lot. Sleeping and not eating saying his mouth is hurting and he can't chew. He always has excuses, seems very defensive about what I ask him?

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Cass, your friend doesn't understand what is going on in his head any more than you do. What you're describing does indeed sound typical of dementia and is not something he can help in any way. His "excuses" are him grasping at straws trying to explain both to himself and to you what on earth is going on. It's frustrating for you, I know, but it's miserable and frightening for him.

Has he been seen by a doctor? Have you been given any medical or psychiatric advice?
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Cass1949 Jul 2019
Whoops, sorry, I just answered my question. Please see answer above. Thanks for your response.
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I sympathise, this must be terribly difficult.

Keep a journal until next week's appointment: log the incidents you notice, with time of day and what's happening, to help the neurologist spot any relevant patterns. Was seeing the neurologist suggested by the psychiatrist?

Has he had a hearing test, just by the way?
Nothing to see in his mouth, or related to his teeth?

If there has been a formal diagnosis of some kind of dementia, then yes this could well be a step down in brain function - but I would wait and see, don't get ahead of yourself. Meanwhile I think you can only do your best to prevent risks by assuming that he cannot follow instructions or remember procedures. How are you, are you coping all right? Do you have help from anybody?
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Cass1949 Jul 2019
Neurologist was referred to by his primary Dr., Primary Dr. diagnosed slight dementia a couple of years ago.

He has some problems hearing, but refuses to wear hearing aids, has given them away to his friends, has told me not to get him anymore.

And yes, I think he is having some mouth problems, seems he ate hot chili and it developed sores, dentist prescribed medicine and he (also has hypochondria, paranoia & anxiety has worsen) tells me that the dentist had unclean tools and he got something, It appears to me his mouth looks better, but in his mind it isn't, but then again, I don't know?

I have help once or twice a week or when needed with Right at home, it does relieve a lot of stress.
Thank you for you response, it helps.
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He's given his hearing aids away to friends???? What on earth are they going to do with them?!

I hope you're able to tread water until he sees the neurologist. There is clearly *something* going on, but it wouldn't do to try guessing.

I would put the neurologist in touch with the psychiatrist if you can. Sigh, it would be nice if these specialists would consult without being told to; but they probably won't, and each may have input that will help the other, so it's worth asking.

Are you on his HIPAA list?

Chilli, no matter how hot, wouldn't cause mouth ulcers but it would hurt like heck if there already were some (or other tenderness caused by some kind of infection). If he'll let his PCP do it perhaps a swab might be in order?
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Cass1949 Jul 2019
What is the HIPAA list, I am just Power of Attorney for health care and some other personal work matters, I do have a Contract to work for him which is drawn out every year by his Trust Attorney since I became his caregiver.

His friends are his age and they are hard of hearing, so he is being generous, but clearly does not want them.
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Cass, regarding the eating and mouth issues, I wonder if your friend has acid reflux. That type of acid can play all kinds of havoc with one's throat and mouth. Just an idea, before he eats, have him chew a Tums Smoothie as I found that works for me, but check with his doctor first.

With the other issues, it could be that since you were an employee at his business, it could be that he doesn't like having you tell him what to do now that you are his caregiver. Here's an idea, buy some nurses scrubs, or a top to try out, and see if that makes any difference. I noticed that my parents were more apt to listen to a person in a medical uniform then to me.

Then there are some folks who will NOT grow old gracefully. They are angry at the world because they are aging. My Mom was that way. My Dad had a sense of humor so for him growing older was easy.
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Cass1949 Jul 2019
Thank you, the scrubs is a great idea, love it! Yes, he does have acid reflux, I'll check with his dr.

He hates that he is getting older, no sense of humor there!
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You don't mention an age. It is sounding a bit as though there is some dementia. It is like being in another world; not watching TV as we would, but watching in some way, or using it to kind of blank out and go to another world. And any time you are trying to question, or figure it out, it is a challenge, and frustrating, making it all worse. I would back away as much as you can and see where this goes. Watch without comment. Reading Oliver Sacks books, those latter ones before he died, there were some amazing essays on how he looks at the brains of those who have dementia. Basically as just another world. A whole world in some respects, but not our world.
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Cass1949 Jul 2019
age is 85, and that is a good answer, dementia is a whole world in some respects, but not our world as we know it. Thanks.
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Both of my parents did/do the exact same thing.........they REFUSE to ask for help with going to the bathroom. Period. They'd rather fall and hurt themselves than admit they need help. Dad (who died in 2015) did not have dementia; one time I found him *literally* on his knees crawling into the bathroom because he'd fallen out of bed but refused to pull the cord & ask for help. Mom, on the other hand, who's still alive at 92 and DOES have dementia, also refuses to ask for help going to the bathroom. She's 'ashamed', she says, and hobbles herself out of the wheelchair onto the toilet, etc. She will break her pelvis one of these days in a fall that WILL happen, but there is nothing anyone can do to prevent it. She has bed & chair alarms at the Memory Care facility where she lives, but by the time someone gets there after the alarm sounds, it's already too late to prevent a fall. I don't think you can blame dementia entirely for what your client is doing; it has to do with pride (which goes before the fall, right?) more than anything, in my experience & opinion. And dementia, by the way, is progressive. It always starts out mild and gets worse as time passes. How quickly it progresses is anyone's guess.
Best of luck!
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He see's a psychiatric once a week, helps a little. He has had many tests, we have even been to Mayo, Arizona and seems to get thru all tests? Has appointment with his neurologist next week, maybe something will show up then, up to now every time we have been to Dr's he seems to be okay, we get home and in a day or so his behavior starts? Has been diagnosed with slight dementia a couple of years ago, maybe it is just getting worse now?
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The neurologist may do a brain scan and give you the answer you need. To me, it does sound like dementia, this is a real tricky disease and affects everyone differently. My step mother has that same blank look on her face.
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