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My mom has been in a nursing home for 3 weeks. We moved there from assisted living when she could no longer walk, dress, shower or use the restroom by herself. Also, she became very confused and would call us and say that she had been left at a party and we needed to come and get her. One night she called and said she had been in a car wreck and to come and help her. (she hasn't driven in 5+ years) She stays very confused. She knows all her family but she doesnt remember us visiting from day to day. She doesn't know where she is or why she is there even though we explain it to her every day. She stays angry and asks over and over "to go home"... We tell her she can no longer walk or do things for herself and she says "yes I can!!!"... Two recent visits she tells me "get out if you won't take me home!!". One of my sisters, that lives the closest, goes every day to check on her. Me and my other sisters, who live out of town, rotate weekends. I don't want to go. I want to see her, but not like she is. I'm afraid to go, I don't know how to handle the anger from her and the questions she asks. One of my last visits I took my daughter and little granddaughters. When she saw us she asked why we were there. WE told her we were there to she her and she replied with cursing. This coming weekend is my weekend and I'm physically sick thinking about it. I want to see her. I want to visit her but I can't handle the uncertainty of what I will find when I arrive and then how to deal with her anger.

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What you are feeling is normal, reasonable, and very human. It is hard for any of us to see a loved one struggling or in pain. Your Mom's coping mechanisims no longer exist...Alz. has robbed her of that. The fustration you are experiencing is in trying to use logic with a person who is in a state of mental chaos. Both are tough emotions to deal with.
Both you Mom and your sister need your support, so I would not stop visiting. Counseling might help you realign your expectations so that you can create some distance with her when you visit. How would you react to a neighbor or friend who had this illness? You would not be as emotionally involved and that is what you need here. In other words, temporarily shift into the professional "caregiver" mode, instead of the daughter mode.
My Mom has severe bouts of Sundowner's syndrome which mimics Alz. When she is in this mode I try to follow her stream of conversation and go with it. She is sometimes belligerent and wants things "fixed" right now and in her way, but very often they are unreasonable requests such as you mentioned..."wanting to go home" etc.
Try to think of it as giving your sister a break, if that will help; that you are there in support of her. If she is going there everyday, asking you to come every other weekend sounds like a reasonable request. Perhaps it would be best not to bring young children or have several people in the room at the same time...they get overwhelmed.
Bring her things that may create a soothing environment for her. Family pictures, quilts, scented sachets, music, whatever works. Find those moments where she is calmer and make a mental note about what you were talking about at the time or what was in the environment that caused the peaceful moment.
This has to be the worst ailment on the planet. There is no pattern, no way of predicting what the next step will be.
Try to muster all the patience you can and "center" yourself before you leave by not expecting the worst. You do not have to spend hours with her, but the visits will help out your sis and give you a little peace of mind that you at least got to check on her in person. It is good for these facilities to see a lot of visitors coming in...those patients get the best care.
I hope there are support groups in your area. If not, find a good counselor who deals with elder care issues. You cannot reconcile these feelings on your own.
Good luck.
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I'm wondering if she's needing meds that the nursing home isn't giving her. I agree about the 'sundowners syndrome' so I'd go in the morning after breakfast. Can you take her out in the wheelchair and push her down the halls instead of just sitting and talking? I'd also make friends with all the people that are taking care of her personally, so that you'll feel free to talk to them and/or ask questions. When it's your turn to see her, stop and get a platter of cookies for the staff that's helping your mom. Make your visit special to them, and they in turn will help you.
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I symphathize with your feelings. It is so hard when loved ones act this way. You are still expecting a loving, kind mother who is at least somewhat logical. Those days may be gone. I too have been cursed and told to get out. Revising your expectations is the key to getting through the visits. They don't have to be long visits, but I would continue to go visit and check on your mother. She may never stop asking to go home. One response might be to say that it's Saturday, and we'll check into that on Monday. Redirection and evasion are helpful with dementia and alzheimer's because logic and reasoning are gone.
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You write that you are "uncertain" about what you will find when you visit your Mom. In fact, you are very certain that the woman you will see there isn't in her right mind, is frightened, and is looking for help which actually won't help her. Stop seeing her as your "Mom" as much as possible, and treat her the way you would any older, scared and confused adult. That will help your remove the expectations that things will be happy and serene and they way (you probably wished) they were "before" -- just in a different location.

What you are seeing with your Mom, as you are hearing, is quite common. The pain comes from the gap between what is and what you think they are supposed to be. This is just how things are for NOW. Maybe medication changes will help. Maybe time will help. Maybe humor will help. But what will genuinely help now is to quit hoping for a different situation. It's one thing to tell yourself you "can't handle the uncertainty" and another to say, "I don't like that she has changed so much is frightened and I can't help the way I wish" (or whatever is really true for you; that was just a guess). The second way of seeing things is closer to the objective truth, and there is a degree of peace in calling a spade a spade. The more peace you walk into the place with, the more peace she will be surround by, during the visit. It is how it is, for now. Hope this helps.
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Gigi, I'm so glad you came to this site there are many very good people here with a wealth of insight and experience. But stood out the most for me was elaine826 advice about having your Mom checked for a UTI.
My Mom now struggles with UTI's but we found out the hard and frightening way, my Mom was NOT my Mom!!! I was afraid seeing her like that. After being treated for the UTI, she soon returned to her stubborn, demanding and controlling ways except with clarity and self control and a good heart mixed with love.
AZ is also scary place to live, my Mom is on the Excleon patch and Nameda has allowed her to be a better person for her and everyone around her. I too used to dread going to see my Parents because of their behaviors but my love for them kept me coming however, I would be remiss if I didn't say that prayer and my faith in God is what gets me through. I petition you to find what gives you strength and courage to lean on, also use your community resources for the elderly and read up on the elderly. I’ve learned so much, I’m now journaling for my Daughter for when my turn comes.
I have a very good relationship with the NH Staff, everyone from Laundry, Housekeeping, Nurses, Techs, Dr’s, Receptionist, Activities Coordinator NH administrator. They know me on good terms but also know that I am present, I ask questions, I am supportive but my Parents are my main point of concern and I do everything I can to keep it like that. A smile, thanks, hug, cookies and the like go a long way.
I wish you better, don’t give up come here and cry, vent, explore ways to help your Family to make this journey easier.
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gigibisme - you state that you brought mom to the nursing home when she could no longer walk, dress or shower, etc. and then mention she was confused. Was she confused in the assisted living? Has she been diagnosed with alz. or dementia? More information is needed as to WHY and WHEN she is confused. If she hasn't been diagnosed with dementia/alz., etc., and the confusion came on suddenly - have them check for a urinary tract infection. My mom was fine on a Friday afternoon when I was out shopping with her, the next morning at 8am the neighbor called me saying that my mom was at her mailbox screaming for help because her house was flooded and there was water everywhere. She was also cursing at everyone (something she doesn't do). I got there in ten minutes and her house was NOT flooded, there was NO water even though she kept wiping it up (she thought) with towels. She was yelling and cursing at me and the neighbors and would not go to the hospital. When I got to her house I did a quick evaluation and determined that it didn't seem like a stoke - but what a change in her! She was very confused all the way on the drive to the hospital. They did a urine test and determined she had a severse UTI. I could not believe how fast her confusion and attitude changed. I was informed by the hospital that many elderly get UTIs and don't recognize or complain of the signs for a while, and then all of a sudden it's full blown and this is the outcome. I've educated many people on this - who knew!!! With one does of antibiotics and other meds for the UTI she started getting back to her normal self. Just a thought if she hasn't been diagnosed with dementia/alz., etc. Keep us updated please! Good luck.
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Me again - sorry I didn't add this in my last post above. Check her list of medications that she is receiving at the nursing home, make sure it matches the list of meds she was taking before she went there, and if it was changed ask why and who authorized the change. When my mom was at rehab for a broken hip she seemed in a daze more than usual after 3 days. I checked her nurses station med folder - thank goodness it was only 3 days after she was admitted, and I saw that she was getting 2 sleeping pills. When I questioned this, the nurses said she was complaining that she couldn't sleep so they got drs. (their staff dr. not her personal dr.) orders to give her a sleeping pill. Well she was ALREADY on a sleeping pill and now they were basically double dosing her! Didn't anyone bother to look?? So check the meds she is receiving - do this weekly - and make sure there isn't one that has been added or taken away (which can cause side effects if withdrawn suddenly) or generic brands replaced (yes they do make a difference-I have first hand account with that with my dad but that's another post It could be a medication issue. Does staff like that you question them and want to see everything in the folder - the place where mom was wasn't too happy -- not they they were hiding anything but because it made them look things up and get files - gosh how dare I interrupt their personal phone call. LOL But you know what - they knew that I was on top of things and was always checking and with that I felt more comfortable and it did keep them on their toes. I walked around with a pad and paper whenever I was in the hospital, rehab or assisted living. I wrote everything down - both good and bad that I saw or heard - yes it helped keep everyone on their toes; I was able to complain about things effectively because I had documentation (day, time and staff involved) and could also give kudos to supervisors regarding their staff when I saw something well done. So check on her meds also!
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You are to be commended for looking after your mom. I think that if you are uncomfortable about going (at least this coming time) that you should not go. It doesn't mean you will never go...it just means you aren't going this time. Do what is best for you at this time. Your mother is being cared for and your presence is not necessary. I know I wouldn't go if there were other siblings involved. My mother is demented and confused but still lives with me. When she finally goes to a nursing home, I will see how she acts when I visit...if it is like she acts with me now, I will limit visits because I have had enough after 8 years. Never mind that I have 3 brothers who do not help with anything. At least you have other siblings to pitch in...it is not all on you and you shouldn't stress yourself about it. This dementia and confusion is beyond us. Take care of yourself first.
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Gigi, please learn to separate your mother from her disease. The abuse you receive is from the disease, which is what it is and you can't change it. Go see your mother because after she dies it will be too late to do so. Love who she once was, offer her your compassion and forgiveness. But since her hurtful words are not authentically hers, take the steps you would take with any neighbor's barking dog: put up a fence to keep you safe from its bite, and then ignore the barking noises. It's the only thing I've ever found that works. Good Luck. God Bless You.
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When siblings share the responsiblity it is so much easier on everyone. You shared the love, now share the caretaking/visiting. Please stick to the visiting schedule because when you don't go, that repsonsibility falls on someone else. Lots of good advice here--except that one.
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