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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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This is so difficult, and you must not blame yourself for not being superwoman and not being able to do it all. With her condition, she is not looking at the world in a realistic way. Calls to go "home" are wishes to be the way she used to be: independent, able to care for herself and free to come and go and do things on her own. She can't do this now. And unfortunatly, she may not be capable of learning new things easily, such as how to function as a blind person. You would not be able to care for her at home without having 24/7 aides waching over her constantly. My mother with advanced dementia was leaning forward in her wheel chair and falling. They had to put her in a geri chair which tilts back and the person can't get up. Staff in nursing homes don't want our elders to fall, as falls are very harmful, especially if bones get broken and there are concussions. Talk to her doctor and the nursing home staff about the situation and try to find out more about your mother's options for care. If she is stressed, perhaps some mild calming medications might be in order.
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I’m so sorry you and your mother are going through this. My brother and I had to place my mother in a memory unit after she fell in AL and had a subdural hematoma. She has improved physically and just wants to go home. She’s 87 and has early stage dementia. I live out of state and visit once a month. My brother is local and goes twice a week. I also struggle with guilt mixed with grief. It’s a daily battle to convince myself we made the best choice for her care and safety. When she moved to Memory Care, we didn’t give her a phone. I did, however, place an Echo Show in her room. It enables me to see her while I’m talking to her. I can also check on her overall state, like the fact that she was walking to the bathroom on her own and neither I or the staff realized she was ambulatory at that point. The only thing I’ve found that helps with my mother’s desire to go home is redirecting the conversation. It’s still hard to hear because she’s quite lucid and I know she’s in emotional pain and homesick. Praying for peace for you and your mom. I have to remind myself daily that the decisions my brother and I have made have been made out of love. But it’s still hard.
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God bless you dear retired nurse. I'm one too and like the writer, am faced with mom's sadness and calls. Guilt hit hard, and then I , too , realized Grief, not Guilt would get me thru. Thank you, for all you do. Ps, i was also retired, nearing 70, but found a position only a few blocks away thanks to an agency, for 2 nights/week w/ a disabled child. I literally watch him sleep and give gt feedings. Don't quit too soon. We are often short. Good older nurses are desperately needed.
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Talk to her neurologist about her vision and behavior problems. Talk to her primary care doctor as well about difficulties managing her care in her NH. She may need a referral to a geriatric psychiatrist and maybe some medication to help her relax. She might also benefit from therapy to help her cope with her new health status.
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Corticol blindness (the kind that can result from brain injury ) is rarely ever permanent. You didn't mention how long since her stroke. There may be some vision impairment, however most patients do recover their vision. You might consider ordering another vision test. It is true that patients with Antons do sometimes fall as a result of walking into objects. However , there are other reasons the elderly fall that are not related to vision. Either way it is inhumane to keep a person tied to a chair, or constrained in one form or another 24/7 'to protect them from self harm' Lack of movement will cause a rapid deterioration in health. An aid could surely take your Mother for a walk around the building twice a day... I suggest you speak to your Mothers physician, and request he put in a request to the nursing home. A call to 'go home'...is not the wish to return to a particular building...it is the call to again feel ease and comfort. Guilt is the voice of the Higher Self within all of us (conscience for call it) telling us there is a better way than our current choice "Walking is the Best medicine" Hippocrates
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Dementia AND blind?! The poor dear must be terrified. She needs to be heard. Listen and agree with her. Tell her you know how she feels. Tell her you are sorry she is going through this. Tell her to take deep breaths (that's good advice for you too). Ask her doctor to try different medications that can help keep her calm without drugging her up too much. You don't want her to fall. It took me and my Mom (with Alzheimers) 6 months of trying different meds before we found just the right ones and doses. She's now taking Antidepressants and Trazadone. I personally would rather my mother be calm and peaceful than lucid and scared. You could also hire a sitter to go visit with her for a couple of hours a day. There are sitter agencies that provide sitters for elderly. Good luck to you.
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I worked in a dry cleaning store many years ago. My trainer was very candid, and she told it like it was. The girl later left to train to become a nurse; I left to become a data processing technician. I had came across the girl's obit not too long ago; she had a hemorrhagic stroke in 2013 at 55 years young and lived in a nursing home for eight years until her death this past January. The girl also had Covid; I had my vaccinations against Covid. Aside from being out of it and my appetite took the day off, I made a full recovery. I only had to rest on my sofa for one day only along with listening to my radio; that made the recovery go very well
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nikkih81: Many elders in facility living verbalize "to be taken home." This could mean a variety of places, e.g. their childhood home, et al, whether they have Anton's Syndrome like your mother or not.
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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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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.

Prayers
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sunshinelife May 2021
A lady with a heart...& a wise answer. both the walking and the camera..and a good sprinkling of compassion .
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Listen fully, tell her you do hear her, then forget it. Sounds cruel. It's not really. She may be "sundowning", or just feeling lonely. I found with Mother that this worked. Not once did I say I would. I did, however, tell her she was in her "new" home.

I, also, began to realize that what she really wanted was to go to heaven (God's Home). This may or may not be ok with you, but Mom was tired of living so scared, helpless, etc.

Mostly just love her unconditionally and try not to take anything to personally.

Good Luck and God Bless
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There are no good options for LO wanting to go home and most of us working or not cannot take care of
them 24/7 ... guilt is what we have to live with because we’re so caring.
i would try visit everyday... bring snacks .. little gifts .. take her walks ..and generally spend time ... also if you arrange /hire someone to be companion that would be very helpful. .. she’s lonely and bored.
ask staff to cut back calls to tell mother you’ll call back. .. but you should visit or call everyday ... and assure her she’s in a safe place and getting good care.
there are no good solutions except
trying to make them comfortable .
good luck
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This is going to sound harsh, but there is a long history with my mother that I don’t want to go into - I have posted about this many times before. My mother has dementia. When my mother was in assisted living, should would call all the time with accusations and hallucinations. It was very upsetting and there was no redirecting her or calming her down. The calls would come in at all times of the day and night. She would also call other people with stories. I finally blocked her number and other people she called eventually stopped answering her calls. She stopped being able to use her cell phone due to decline and I eventually turned it off. She was evaluated for medication that helped with her behaviors and hallucinations.

She was moved to a nursing home after she significantly declined. They decided she was on too much medication and started titrating her down because she kept falling. She figured out if she brought phone numbers to the staff that they would dial the patient desk phone for her. She started calling me every hour to half hour yelling. I called the social worker and explained that she was having the staff call me, that it was frequent, that she was agitated and made no sense and she was making accusations against the staff. I also discussed how upsetting this was and that since the call came in from the nursing homes number I picked up the call in case it was an emergency. I asked the social worker to have the staff redirect her. I cannot take calls ten times a day. That didn’t always work. So if I finally asked that my number not be called at all.

The staff can communicate with me regarding her needs or updates on health. I wish this was not the case, but it is the only way I can keep my sanity and insure she is safe. It doesn’t help her to make phone calls and be in a constant state of agitation either.
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cporre May 2021
oh gosh. You're right, it does sound harsh, BUT I can see exactly how this could become necessary. I get hysterical
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You’ve had some great responses here well worth checking into. My MIL had macular degeneration and was legally blind. We took advantage of benefits offered by our local NFB chapter. There are several organizations noted here that you could also look up: https://www.orcam.com/en/blog/associations-and-organizations-that-help-people-who-are-blind-or-visually-impaired/

She was an avid reader before her MD progressed to full blindness, so we got access to books on CD for her to listen to through this organization.

It’s so hard to deal with the unhappiness of your loved one. I know how painful that can be as my dad (90) living in a memory care facility, was also very agitated and his desire to go “home” high a month or two ago, despite the fact that he can’t walk at all and is now completely incontinent. He also suffers from dementia, but at times can be very lucid. Tweaking his meds really helped - I also contacted one of Teepa Snow’s representatives and we had a family call with her which was quite helpful. She recommended finding things for dad to do that fit into his skill set that he could “help” with - coloring pictures, folding napkins, organizing a box of silverware, etc. to redirect his mind and reduce his anxiety. We didn’t end up having to resort to this as taking him off a medication that was causing extreme side effects did the trick.
It’s a process coming to the point of realizing that you are grieving. This knowledge helps me direct my actions as a caretaker. I try to fill the missing “holes” of loneliness for dad (when I can’t be with him) by acting as his advocate. I think the greatest pain suffered by my dad is loneliness. I try to set up visits from Companion caregivers who can sit and talk to him, take him for a walk, etc. This is usually impossible for the on call caregivers at his place because they are dealing with 20 or more residents at a time, and can’t always get to everyone, so their main focus is caring for his immediate needs. Perhaps one of the organizations for the blind could help you find free or subsidized companions who could visit your mom and keep her company? Also wondering if you might be allowed a leader dog for companion care given her blindness? There is a woman at dad’s place who gets visits from her dog weekly - and I know she looks forward to it so much! I hope you can find something that helps ease both you and mom’s pain. Hang in there!
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Please forgive me if I sound blunt. I’m not always good at putting thoughts into words.

Does your mother actually need a phone to make calls or can she and you get along with her only receiving calls? if she can just receive calls, it may make things easier for you as you can pick and choose calling times.

On a slightly humorous note: When my mother-in-law, with dementia, went into the nursing home she took her cell phone with her. After a period of time she started calling 9-1-1 to come get her out to take her home. My s-i-l then had her cell phone plan changed to where m-I-l could only receive calls.
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Both you and your mum are victims of life circumstances, and you can only do what you can do. You know your limitations.
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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?
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Are you able to hire a "sitter" part time to walk with her and have a little conversation? It might help her.
I feel for both of you.
Best wishes.
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Know that you are not alone. The fact that your mom is not as she used to be is causing your to feel grief. Realistically telling yourself that you have done your best and that even though in a perfect world she could live with you, the world is not perfect and therefore she can’t.
Others have suggested medication consult with a physician. That is a good start.
When my dad moved to LTC, we did not put a phone in his room on purpose because he would have used it to call me to complain, talk nonsense and berate me. If he wanted to talk to me, which was very rare, he’d ask the nurse to call me. The nurse would call and I’d ask her what dad wanted first, and we’d go from there. It was always a complaint. Sounds cruel maybe to some, but it wasn’t. I was trying to save my sanity. Is this something you could do?
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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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cporre May 2021
I think we are walking in identical shoes. Thanks for posting; it's the same situation for me.
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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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Don't guilt yourself, you're doing the best you can for her. She's getting the care she requires 24/7, so you need to take care of yourself as well.
As mentioned, redirecting & distracting is the usual process for repeated pleas to "go home".
My mom (in CH) gets extreme sundowners, is combative & strong even with meds! They call me & I talk to her for over an hour till she calms a bit & "willing to wait till the daytime" when I tell her it's safe to outside. Please look up Teepa Snow videos/podcasts on YouTube, excellent strategies on dealing with dementia topics. Blessings to you! Take Care 💘
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nikkih81, this is so sad for you and your mom. As much as you'd like to care for your mom, you know that is an impossible task - this doesn't mean that you aren't still her caregiver - it's just in a different mode. You are her advocate - making sure her needs are met.

Connect with the social worker and director of the facility and let them know of the issues your mom has and ask how they can help your mom integrate better into her new community. Your mom's facility should have a care plan in place for your mom. Go over it with them. Ask them what they know about Anton's Syndrome and what activities can be planned for her special needs. I realize that your mom's alzheimer's/dementia makes this harder for her as she may not remember she can't actually see.

Research Anton's Syndrome and see if there is any therapies available to your mom to help her adjust to her new normal. See if the social worker at mom's facility can help you with this - or your mom's doc who diagnosed her.

You don't have to answer the phone each time your mom calls. When you talk to her reassure her she is home. Try and validate her feelings of her perception of the meanness of the staff - but that in actuality they are trying to keep her safe from harm.

My mom's AL recently reopened but visits are by appointment only. If you can manage it try and pop in (by appt if need by) at different times and try and observe how the different staff handle you mom. If there are any issues you find take them to the director.

I don't know if any of this will help but I wish you best of luck as you, your mom and the rest of your family journey down this new path.
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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.
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Wow. Never heard of this, and it sounds horrific. The one thing I generally say I would not want to lose is my sight. Arm, leg, hearing, speech, I'd even welcome milder dementia over losing sight.

Based on your profile, your mother isn't really that old, relatively, but she has a host of issues, this one being in many ways the worst.

"I am beside myself with guilt for not being able to care for her at home."

About all I can say is please don't feel guilty for being unable to take care of her. Her conditions are enough that one person can't do it all, even if you were single and not working. It isn't even just the blindness, but the fact that this condition leads her to think she CAN see and will try to get around on her own. As noted, even without a family or job, there are tasks and things you need to do that would prevent you being at her side 24/7 (what kind of life would that be, for either of you?) At least there are multiple people to watch over her (but typical NH doesn't have someone glued to any resident 24/7) and they get to go home, rest, have a weekend off, vacations, etc. You are ONE person, who is needed in multiple capacities.

Is there any way you can avoid answering all her calls? How many times/day does she call? Can they keep her occupied, away from the phone? For that matter, if she is blind, how does she make the call? Do they assist her? Perhaps direct them to reduce the actual calls by telling her you didn't answer, they've left a message, you'll call back and then redirect her. Your profile mentions dementia, and this is what is often used to get them off that one-track mode. If they won't help, then let calls go to voicemail more. When you get to them, sure, they'll still be upsetting, but understand there's really nothing more that you could do. Visit when you can. Chat on the phone when you can, but try to steer the conversation away from home. Ask about her past, how she met your dad, about her family members, friends from the past, etc. It is a bit more difficult to redirect when you can't get her visually focused on something.

I feel so bad for your mom...
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Can't help because my Mom never asked to go home. But what an interesting syndrome. Isn't the mind amazing. I know it causes her problems but still interesting.
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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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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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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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