She had an occipital stroke that caused her to go blind. She was diagnosed with Anton’s syndrome. Basically, people with Anton’s syndrome don’t know they can no longer see. Their brains show them stored memories that feel like sight. They may know what type of room they are in and be able to say”there are pictures on the wall.” Or maybe even guess your correct hair color. Since they have no idea they can’t see, they can be extremely convincing in their confabulation. It makes it extremely difficult training them to rely on other senses as they have no knowledge of the vision loss. She in constantly trying to walk around thinking she can see when she cannot. She falls often. When the nurses try and keep her seated for safety, she doesn’t understand and feels they are mistreating her.

I am beside myself with guilt for not being able to care for her at home. But due to her condition she requires 24 hour a day care that I cannot give her and work a full time job while caring for my family. I need help. TIA.

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Please change your G word. You aren't an evil felon taking joy in your Mom's pain.
Change the G word to GRIEF, which is what you are feeling for what your Mom is going through and for the human limitations that preclude your fixing this. There is, in fact no fix it to something like this. It is sad, it is frustrating and awful. As to the phone calls, they are heart breaking. Very heartbreaking, and I guess what you do is, when you get off the phone, go have a cry. It honestly helps. And you understand you are doing the best you can with this hand you have been dealt. You aren't a Saint and you aren't God. There are no magic wands. Your poor Mom is desperate and you are heartbroken. Be gentle in your response and tell her you are so sorry, and you know she is upset, and that there is nothing you can do to help her understand. That won't help anything. It is the simple truth, and truth, like love, often isn't enough. My heart does break for you both. I wish you better days.
As a retired RN I am most ashamed to tell you that I never heard of Anton's Syndrome and will be using my search engine big time looking it up. Nova on PBS just had an amazing program on our senses. Thank you for giving us the name and letting us know how this syndrome works on the mind.
Helpful Answer (10)
Reply to AlvaDeer

Good morning.

It's okay to be sad. This is a REALLY sad situation.

You are right that 24 hr. a day care is not possible in your home given your Mom's need for care.

This is the right place to be.

A geriatric psychiatrist would be the way to go.

I'm so sorry.
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Reply to cxmoody

I am terribly sorry for this difficult situation. Because you posted later in the evening it may take longer to receive replies

Is she on any medication to calm her? I know it is often less advised to give patients of strokes medications for fear of more alterations to the brain.

We have good friends with the situation of the husband having suffered a hemoraggic stroke several years ago. I think I have that spellimg wrong but spell check is not helping me. The wife has had a very difficult time finding the right antidepressant and calming medication for her husband as he is very prone to constant agitation but they are being prescribed
. I hope some others help you with suggestions and I am so sorry for your situation. A septic infection has left my mother immobile in a wheelchair
Because it also altered her mental state she keeps thinking she will walk. She is somewhat accepting of her situation likely because she can't remember that fact.

You must not blame yourself especially because of your need to work. Her being in your home with the living conditions you have would make your life seem much worse. I wish you strength.
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Reply to Riverdale

Agree with Riverdale's suggestions! Is there a geriatric psychiatrist at her nursing home who can weigh in on the possibility of medication to lessen her anxiety and agitation?
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Reply to BarbBrooklyn

My MIL would call and demand that we come get her and take her home. When we gently refused, she would then berate us making the most hurtful accusations you could imagine. We talked to the facility doctor who prescribed meds to calm her down. It improved but did not eliminate the problem. Now, we just quickly end the conversation when it takes a turn for the bad. It’s just something that I guess we have to deal with as much as we can and try not to let it get to you. As I tell my husband, it’s the disease talking.
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Reply to TiredinTexas

I can really relate to you. My mother is not blind but she has anosognosia which is the inability to recognize that she has significant cognitive impairment related to dementia. We relocated her to a residential assisted facility last year but she's not happy there and she cries and asks to go home all the time. She even says she'd rather die if she can't go back home. Even though I truly feel that the relocation is best for her safety and care, I can't help feeling guilty about her being unhappy. I think this is somewhat normal because I don't want my mother to be unhappy and sad. I also grieve for the mother I knew before all of this. I deal with it by remembering my mother's home life before which was unacceptable and dangerous The emotional support of my husband, family and friends has also helped me a lot. When this Covid-19 mess is over, I may also eventually find a support group. You may not want to take all her calls if it's that upsetting. You can always call the facility to see how she's doing.
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Reply to Johnson1
cporre May 31, 2021
I think we are walking in identical shoes. Thanks for posting; it's the same situation for me.
My mother did this, too, both in rehab and then when she became a permanent NH resident. I was annoyed that the staff (especially in the rehab) would call me and put her on the line to barrage me with complaints about how they were trying to kill her, I had to come and get her, how we "could make it work" if I were to take her out of there, etc. These calls caused me a lot of stress. If I didn't know that a staff member was right there with her, I would have just hung up.

This was about the time I requested payment from my POA brother of $20/hour (and he offered, so I never had to ask) payment for the two previous years when I had to spend hours with her chauffering her around, etc.). The payment eased the stress, as I started considering it just a job. And when she transitioned to the NH for longterm care, they added meds to calm her down.

I did NOT guilt myself because I didn't take my mother home and become her 24/7/365 caregiver. Why would I do that, when my 3 out-of-state brothers, got off by doing nothing?
Helpful Answer (5)
Reply to CTTN55

Understandable your mom doesn't want to sit or lay down 24 7.

You should suggest that they let her walk around using a walker to get exercise and they could walk with her..

And don't take your mom's hysteria lightly, sad to say but there are people working in Senior Homes that mistreat the Seniors.

Buy her a Big Puzzle and then she can realize that she can't see..

Check with the blind and they have things your mom would be able to use..

Let her have things in her room if she doesn't already to be able to listen to music or other things to do to keep her occupied.

I would install a camera in her room so I could check on her thruout the day to see for myself what goes on.

Helpful Answer (5)
Reply to bevthegreat
sunshinelife May 31, 2021
A lady with a heart...& a wise answer. both the walking and the camera..and a good sprinkling of compassion .
Both you and your mum are victims of life circumstances, and you can only do what you can do. You know your limitations.
Helpful Answer (4)
Reply to cetude

When my mom was recently admitted to a care home, she would call in hysterics and wanted to come home. When my mom gets hysterical, there was no explaining or trying to get her to understand so I do 2 things now.

1. Tell her she needs to sort it out with the boss of the care home. It isn't my decision to make. That usually slows her down.

2. Sometimes if I don't feel able to handle a call from my mom, not knowing what the call is about, I let it go to voicemail. Then I can listen and respond when I'm ready. Usually by then she has calmed down or forgotten why she called!

I'm learning that it's just as important to maintain our own mental health and self care. It's traumatizing having a parent go to a home. Some boundaries and self care may be justified for self-preservation!

Good luck!
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Reply to blucrz

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