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.
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.
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.
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...
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.
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.
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 💘
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?
I feel for both of you.
Best wishes.
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?
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.
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!
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.
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
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
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
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!