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Anosognosia, also called 'lack of insight' is a symptom experienced by some that impairs a person’s ability to understand and perceive his or her illness.


https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm


Doctor just confirmed Anosognosia for sibling last week. I knew there was this big lack of awareness thing going on but now it makes sense. No wonder the explanations, examples & common sense have not worked! Her brain really can't see the lack of hygiene, the lack of nutrition, the falls etc add up to not being able to care for herself.


It's on file, so in the long term, once she really can't cope she will enter the health system & capacity will be tested.


In the short term...?


Plans to arrive for Xmas: poor mobility, falls risk, incontinent - not bring Aide as *doesn't need one*.


If a situation arrises, I can suggest she leaves. Or I can leave (& plan to).


Any other ideas or suggestions?

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Yes. Standing back so when the bus does implode/explode my children DH & I will be safe.

Last year I still had the mindset of trying to please them all. Nice photos of smiling families in the park etc but I was a stressed out wreck. I've been on quite an education since then. Last year was last year - a never to be repeated event.

This year I booked a local bistro. Turn up & self pay. I was so zen about this year. Starting to over-think things - getting un-zen.

But as you say, a public place. Plan is to flee with daughter. Graceful & Swift. Beautiful. Thank you! No messy goodbyes - just two geese spreading their wings & flying away...
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BarbBrooklyn Dec 2019
Sounds perfect, Beatty.

After years of crazy family antics (my ex's) I learned two important lessons about dysfunctional family partying:

1. Invite outsiders
or
2. Hold party in a public venue.

The chances of bad behavior a greatly reduced and in the second case, escape is possible. In the first case, you have witnesses who can confirm YOUR sanity and the craziness of the behavior of others.

I hope this works out.
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Beatty, exactly what is the plan for Christmas,?

I would suggest a restaurant or similar public place where your exit can be graceful and swift if needs be.

Does someone have POA for your sister?

For someone who doesnt have insight into their own deficits, getting them the proper level of care can be hard. The best technique is often "now it's time to..." as opposed to " would you like to..?"

I'm glad you've gotten off the bus.
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Beatty Dec 2019
Still no POA.
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Just curious... Who diagnosed the Anosgnosia?
I am certain my mother is suffering from it and in many ways it is almost as challenging as the dementia itself. However, most professionals don’t even know the term, never mind what it involves. They confuse it with denial.
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Beatty Dec 2019
Well to say a formal diagnosis is a bit of a stretch ... but after hearing the history my sister"s GP (primary doctor) said "she has lack of insight". Said it was common in some mental illnesses (especially my sister"s type) & also dementia. Said it is very hard (for carers) as the brain doesn't recognise the deficits. I had read up on this so asked if it had a medical name? Confirmed it did : Anosognosia. Doctor noted something on file. She will no doubt have to make her own observations to add the 'label'.

The stress of this I am finding harder than the other symptoms. So I sought councelling this year. He also confirmed (from my info, not own observations) that my Dad *won't* & my sister *can't*. Said Dad had 'denial' & sister had 'lack of insight' due to broken brain.

I'm sorry this probably won't help you. I have little idea what to actually do about it except deal with each difficulty as it arrises.
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Tell her it would be rude, ungrateful and hurtful to rely on the aide's assistance all year long but then dump her/him at Christmas. This isn't how we treat people we value.

Might be worth a shot? - though, do you happen to know whether the aide would prefer the time off or the extra pay???

Next level would be: "you bring your aide or you're not coming."

If she turns up unaccompanied, you go. Tell your Dad this is the deal beforehand, so that maybe he'll chime in with the message now.
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Beatty Dec 2019
I have warned them the Taxi, cafe, whoever, may bill her the cleaning costs of a dirty chair/bathroom. I have suggested & told her to bring an Aide. She chooses not to.

Dad supports her making her own decisions.

Both minimise the incontinence issue. "It doesn't happen ALL the time". So they don't see it as a huge risk.

Well it's not life threatening. No one will die. She will be messy. Dad will be helpless. I will be g-o-n-e.
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I don't know if it's the same, but my Mom has lost the part of the brain responsible for judgement. Mom has Vascular Dementia, and Dad had AZ. Dad passed away almost 2 years ago. To this day Mom refuses to admit anything is wrong with her. Her reasoning is very bad, and has been since as early as 2008.

For example, they bought a car, but it was too big for the garage, and they didn't feel comfortable driving it. Mom had a sit-down tub installed but failed to notice most of the plumbing in the house was failing. After two baths the plumbing was broken permanently. They paid 50K for a cruise, but didn't buy the insurance. Both parents were very ill on the trip and I was lucky to get the ship to keep them aboard. I had an ambulance pick them up from the port upon arrival.

They both had a pact with each other to never go into a home. Sad to say this a very romantic notion of dying, but completely un-do-able without a lot of forethought.

Slowly I was able to get them into an assisted living home. Lately due to my Moms declining health, I've been able to find caretakers for about 60 hours per week. I let the staff at the home take care of her at night, when she is in "low maintenance" mode. This arrangement costs about 10K per month, and the best part is that I don't have to fret about every little thing.

A good source of finding help has been the church. Right now she has three people taking care of her from 9am till 8pm. If someone doesn't make it, I know the home will pick up the slack. I have done the best I can for Mom.
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Beatty Dec 2019
That sounds incredibly stressful - especially the cruise. I have wondered if those neuro exams pick up judgement problems... & if they do, I image probably not until quite severe (ie after plumbing disasters).

But so glad you have a good arrangement now. I have found the church a big support too as my parents have been more accepting of a little more non-family help if it is still from their church family.
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This is hard because, if the person is living with dementia, it means that their brain can no longer monitor themselves. There is a part of the brain that allows us to perceive our actions from the perspective of a third person. So, for example, you are a musician and you play a concert. Afterward, you assess how well you played so you can make improvements next time and know what to practice. According to Teepa Snow (www.teepasnow.com), who teaches an approach to dementia care, about 50% of people living with dementia will have this lack of insight. So, if they just played a concert, they would be unable to assess how well they played. It would not matter what you said. Even if they played great, if they said they played poorly and you said they played great, they would get mad. Sometimes, you just agree with them and move on. It means giving up your need to be right in favor of the need to move on to the next thing. But this can be hard to do. Teepa has a program where certified consultants can help you over the phone or on Zoom over the internet. These are people who can help you develop the skills to cope with this. Good luck.
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Beatty Dec 2019
I have seen a talk or two by Teepa Snow - what an amazing woman. I will check out her website & introduce my Dad to it too. Sounds like great practical tips my Dad & I both need. Thank you!
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Make sure you have an aide available. Better to put client in ADA motel with acceess to handicapped shower and one floor. Family will not be able to handle drama and complications from decline.
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No expectations, no disappointment. Enjoy ur meal.
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Tell her it is imperative that she bring the aide, else you leave if she doesn't. Exit - stage right.
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Update:
Didn't bring aide (not surprised).
I ate my lunch & provided chit chat only - no assistance.
She managed short walk to bathroom unaided but struggling with hygiene evident on return.

I exited swiftly. Left her to call taxi home or obtain ride from others.

I will warn (again) of the possible future embarrassment & suggest (again) to bring an Aide. Will add explaination that I will personally point out if she is offensive & ask her to leave.

I would want to know if it was me... How to make her leave... need to think on that now.
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DianaF Jan 2020
Beatty, good for you!
Re the incontinence and messiness not being life-threatening: It is. My mom got a UTI, an e. coli infection, and ended up with a temperature of 105, it's a miracle that she survived this.
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