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About 6 weeks ago my 81 yr old mom became sick and was admitted to the hospital. From there she needed rehab in a nursing care setting. (I have cared for my mom in her home for the last 5 yrs. Alone and all by myself. Talk about burnout I had it. Her demands were constant. The worry was killing me.) So back to what i was saying. She entered a nursing home for 2 wks of rehab. Exactly 2 wks to the day- back in the hospital. This time serious, and in the icu. Bacck to the nursing home for more rehab. We had a meeting last week and all agree that she needed long term care and that she would stay there permantly. :'( 2 weeks almost to the day(thanksgiving) she was admitted back into the hospital in critical condiction in the icu again. Her immune system is so week. She has never been this sick. She has copd, chf, and dementia. Her lung disease has progressed so much, she never fully recovers and now it is affecting her heart. I can't help but feel that if she was still at home this might not have happened. The doctor did say that she is surrounded by new germs and she has a weekened immume system. I feel like I need to bring her back home and keep her well. What do I do? Sacrifice me and keep her well or send her back to the nursing home and watch her decline. The drs told me yesterday that one day she will not bounce back from this. I don't think I can handle the guilt of this. I have already lost her to dementia but I don't want to lose her. She is my everything. Does anyone have any thoughts?

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Your decision isn't the problem. Yes, she is surrounded by new germs - the hospital is worse when it comes to that. But your mom is too sick for one person to care for her.
You will do her more good by staying healthy and doing what you can for her in the current situation that by trying to take her home - sick as she is - and getting sick yourself. Nearly all of us have these guilty feelings. It's natural and normal. But you are getting her the help she needs. She is very sick and would not likely do better at home.
You can't sacrifice yourself - she would not want that, believe me. You are doing what needs to be done. Be at her side when you can, work with the doctors and staff, and then understand that if she got sicker at home, you blame yourself for that. Caregivers second guess themselves constantly - it's the name of the game. Please take care of yourself, for her as well as for you.
Carol
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Carol said it in her very first sentence to you: Your decision isn't the problem. You did not cause her COPD, or congestive heart failure, or dementia. This is not your fault. It is understandable that you feel very very sad in this situation, but there is no need to add guilt on top of that. If you'd had her home, she probably would still need to be taken to the hospital every 2 weeks. It is her diseases that give her these urgent episodes -- not who is taking care of her where.

Hugs to you. It is heartbreaking to lose a loved one bit by bit to dementia. It is anguish to watch the physical deterioration of a loved one. Let yourself grieve, unhampered by guilt. This is not your fault.
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I have been through a similar experience and 2 years later I still feel guitly, but unlike you I did not care for my Mother at all prior to her going to hospital for a year. My Mother had to go into a Nursing home upon leaving hospital and my nightmare began, as we did not like the home etc,. We moved her and her health changed daily, somedays good, others bad. But now with 2 years behind us, I realised that if I had my Mother at home with me, then I would probadly have a broken marriage, a poor relationship with my daughters and I believe very bad physical and mental health. So although what is going on in your life now, please let go! I don't worry about germs and I don't worry about other peoples opinions, all I care about is giving my best and realising that my best is offered when I am strong. We have to accept things that we cannot change and work with it and around it. The outcome will probably still be the same on whatever decision we take. My Mother is now settled and her health has improved and I am trying to be grateful that we are not alone when times get tough and that we have homes for people who need nursing help. A nurse is in my Mothers unit 24/7, and I could not offer that clinical knowledge. I wish you all the very best and hope you are able to congratulate yourself on having helped your Mother for 5 years and realise how burnt out you were. Take care of yourself in order for you to visit your Mum daily (if you want) and enjoy sometime for yourself. Your Mother will be proud of you knowing that you tried so hard and have cared so much. x
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Don't second guess yourself. This is bigger than you, something bigger than you is in control. You are used to "being ON" for the last five years, with the momentum of a non-stop caregiver. You have too much time to think about it now, since that has been your primary focus! You need to find something else to do, and you will. It will happen. Give yourself some space and attention. Rest and Heal:) Hugs xo
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Thank you all for your kind words. I have never in all these years had so may people think about ME! My mom is very sick this time. She is septic(blood infection) which has caused more breathing problem and now cardiac issues. She has a bacteria that is similar to ecoli, in her blood. Drs suspect she contracted it from the nursing home. There is 1 bathroom to 4 people. And on more than one occasion I have witnessed the bathroom a nasty mess. Believe me I notified the staff several times. Other than that we liked the NH. But i feel at this time I need to transfer to a different facility, one with all private rooms. I don't really no if that will even help. I'm so beside myside my self and exhausted with worry. Since they were able to find out where and what the bacteria came from they should be able to treat it aggressiively. Please keep her in your prayers. Thanks for lisening!!!!!
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LIZ:

Your post reminded me of all the misery my Dad went through until he passed, and right now I'm almost blinded by tears that hurt my throat and give me a headache as I try to hold them back. But sc__w it! Let them flow.

You're fighting 2 wars on 2 different fronts. On the one hand giving in, giving up, and surrendering isn't an option when it comes to your Mom. On the other, self-preservation. Trying to keep yourself from unraveling vis-a-vis Mom's condition(s) is a daily balancing act.

The 2nd guessing and the guilt will always be there, but you're doing the best you can with what you have.

I bid you farewell for now my Queen. Stay in touch, or we'll come looking for you.
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Lizard, It seems like a lot of us have guilt, fear, and the need to take care of ourselves. I doubt it that if you brought your mother home now she would be okay. Aging takes place no matter where they are. Just do your best, let her stay there, and take good care of yourself. You can do the best for your mother if you stay healthy and go to the NH to oversee things, so to speak. Yes, we do care of each other here. I am saying all these things with love.
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This website but most importantly the people who responded to me are a gift from God. I can't begin to explain the gratitude I feel for your responses. Please put a smile on your face and in your heart for knowing you helped me deeply today. Forever greatful, Beth! Xoxo
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Hi, lizard14. What a painful situation you now face with your mother's rapidly declining health. The back and forth to ICU and the nursing home alone is surely taking a toll on both of you in different ways. Your sharing reminds me of the total powerlessness that comes with placing a loved one in a nursing home. Like you, my parent is 'my everything," and it has taken me many, many months to get to a stronger place where I can accept that the nursing home is the best place for my parent's eldercare at this time in her illness. There is nothing wrong if you don't feel that way yet. I didn't right away either. Only now, after many months of crying and missing her still, have I accepted the reality of the clinical care that she needs at this stage of her health decline. If you move your mom now, you may still have to rush her back and forth to the ICU and hospital and rehab -- and your home. Wouldn't that be much more difficult for your emotionally? There are no easy answers when health conditions are so chronic - and the saddest part is that there is not a thing you and I can do to make it any easier for her, and/or on ourselves. It is a process, and a painful one at that.
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Also, have you considered asking the state to do an inspection of the nursing home? It can be an anonymous complaint to the state hotline. Sounds like they may need some oversight in their housekeeping practices. Good luck!
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What IF.... is such an emotional and sometimes cruel delimma. It will drive you CRAZY! if it is possible to see this from another perspective, What IF, all this happened IF she was staying with YOU? then you would be blaming and questioning yourself even MORE so.... Don't Go There Friend. Anger and Blame are always the first hurdles when it comes to loosing a family member. Then the dark abyss of Remorse and Depression, Disconnection, then when comes Self Forgiveness, comes finally the Happy Memories. If you feel there is wrong, keep records, a journal, keep copies of reports, if you think malpractice is warranted, but all this may of happened inspite of anyone's efforts. No one knows for certain, and it is very hard to see a loved one suffer and feel so helpless. I've been there a few times. take a step back, deep breath, so many other people are going thru what you are, right now. don't let it make you crazy, your mom needs your love, your smiling face, and supportive words, just be there for her. -- big hug --
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Your comments come to me at a time when I need them the most. I have been feeling very disconnected in my own miserable world, but today is a new day. My mom is doin better. Before I know it she will be discharged. Where? I'm not sure yet. Planning on talking to the social worker at the hospital today. My brothers are no help I TAKE care of everything. No only for my mom, but at. home too. Everything falls on me. My husband is at hunting camp all week, while I try to figure out everything myself. How nice not to have to worry about anything,ever. I could have never left him if he was the one hurting so bad. I never would. Jealous is the word! (sp looks wrong). Not good. And I will get past it, I always do. Thank you for thinking of me and giving me your advice. It helps. Plus it helps me not feel so alone.
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You have done all the right things - you gave freely of yourself with better grace than probably I have shown, I admit. You did it at much sacrifice to yourself. Nobody could ask for more. Now it is time for the professionals to do their part in the question whether she survives or not. Agree with Carol - hospitals cannot hold themselves free of guilt when it comes to introducing new germs to the mix (you should look in the corners of our ER!... I have been very vocal about that but it never seems to improve.) considering that a personal attendant cannot stand by and sterilize every surface 24 hours a day - you could not do that either. Give yourself a break, accept the fact she has possibly reached the end of her particular journey, continue yours. My mom is 94, and though has no dimentia per se, she has not had any kind of quality of life for the last 3 - 4 years. What is worse, actually loosing them or watching them become something that looks as if they came out of Auchwitz? Mom is little more than skin and bones. Sometimes it is better to let nature decide.
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PS lizard - I have said many times that it is only too easy for others who are not personally invested in being a caregiver to shuffle off the responsability - From the postings I have read I would guess that about 90% of us who have resorted to this kind of website have exactly the same problem - as long as you Will do it, there are all of the others who will NOT! Sad but true. Blackmail may be the only answer LOL... Be Stoic.....
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This is such a difficult dilemma. First, I want to commend you on the love and care that you are showing and have shown your mother. Because of you, she will receive good care regardless of the location. Second, I want to suggest to you that you need help and there may be someone in your area who can help you. If your mom is in the hospital, don't hesitate to schedule an appointment with the hospital Social Worker to discuss your mom's longterm care and what your options are. If you are considering moving your mom to a different nursing home, the Social Worker should be able to give you information on the facilities available in your area which you could then visit. If you have a local Area Agency on Aging, contact them. They can provide you with information on nursing facilities or options for in-home care if you do decide to bring your mom home.
Good luck to you, and don't forget to take time to care for yourself.
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Nursing homes have patient advocates and from the experience I had with my mothers nursing home, they are there to protect the nursing home from liability, not to advocate for the patient.
On the other hand, I had a professional tell me when I was much younger, "You can never make up for what is missing in another's life". Being very sensitive and knowing my mother's childhood, it was natural (unfortunately) for me to try my entire life to make up for her past. Even remembering what the professional said to me, I could not help but try to make her happy. I was brought up and made to feel that everything was my fault....so it was a toxic combination. I was 55 when my mother past. I still have very mixed feelings as to whether I did the right thing when I bought her home after a terminal diagnosis. She watched and lamented her entire life about her own mother, my grandmother, and how she didn't "buy good time" by intubating her and trying so hard to make her live after a lung cancer diagnosis.
Good luck in sorting everything out. It's hard and I have found some peace in a philosophy that centers on acceptance of the impermanance of life, thoughts and things. That same professional also said to me, "Everyone does the best they can." It just doesn't get any truer than that.
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Hi rct1220
I read your reply with great interest as it gave an excellent insight into how complex ones thoughts and behaviour can be. I would love to know the 'philosophy' that you refer to that centers on acceptance, as my experiences are similar to yours I guess, and I believe that you have found peace in your life now in which I am seeking.
Can I thank you for including the quote from professional you met who said "You can never make up for what is missing in another's life". This means alot to me as from reading this made me realise that I spent alot of time doing this for my parents and I guess I still do. I wish you well.
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marianne - I agree wholeheartedly with rct in that you cannot fill a void in someone's life - my mom's entire self-perception was wrapped up in her home and kitchen - she really has very little conception of what goes on in the world as long as it does not effect her narrow scope of interest (rather like looking through the wrong end of binoculars). Now that she cannot do housekeeping or cooking anymore, she mostly just sits in her chair and think of things for me to do.. Unfortunately for all concerned she always has been pretty much OCD and it tortures her not to be able to do it herself, she has many trust issues in many areas, cleanliness not being the least of it. I try to find things for her to do like cleaning and prepairing the green beans - we made an apple pie, I peeled and cored, she sliced and mixed, using her "head" recipe because she could do that sitting down, but as for as trying to get her interested in any other pastimes like reading, it is just not possible. Even while watching TV, she pays more attention to the commercials than the show (especially the obnoxious commercials - drives me nuts as I just tune them out) and cannot track the plotlines of the show at all. Movies with plots more complex than a Fred and Ginger are out of the scope. As far as 'philosophy', if you can call it that, even though she drives me nuts I guess I have a great deal of sympathy and empathy for her as I had a period of facing my own mortality several years ago, and now I have been informed by my cardiologist that I must have a valve replaced within the next 6 mondths or my own life may be considerably shortened, so I am facing my own mortality yet again, so I am understanding how frightening it must be for mom. I had a great deal or resentment (still do, I guess) at being tied down as I have many interest and places I want to go and things I want to do and have had to put them all on the back burner, hoping I will survive to be able to do they yet before I die. but for now, I have 'adjusted', that is all.
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Lizard, please don't blame yourself. Her body is at the stage where she is going to pick up any germs she comes in contact with and germs are everywhere including our homes. They occur naturally in the environment and we can't protect them from each one. He problem is her bodies ability to fight them off. That's just the way things go when they are in decline. Its natural for them to catch infection after infection, im so sorry you are going through this. Please don't blame yourself. You have done all you can do. That kind of care is to much for one person to do. Moving her is unlikely to atop the infection because there will only be new germs there.I pray for you in this difficult time. It so hard I know.
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She seems to be declining quick. She has been out of the hospital 6 days. From icu right to the nursing home. She can barely sit up. She seems worse each day. She asks whats wrong with her. She doesnt even no where she is and is very scared. I know she wants me there all the time. I feel guitly when I'm there and I feel guitly when I'm not. I'm beside myself. I talked to the charge nurse and she says she is doing ok and that her vitals r ok. But she is not ok. I'm so frusterated and scared. Sad:(
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I acknowledged to my mother that she did not need to be afraid about her memory slipping and she did not need to pressure herself to appear or seem intelligent, because I assured her she was and that I was sometimes forgetful too. I assured her I that I "am right here". She loved that. I let her know she didn't have to feel defensive (because she was a bit naturally) but that she could relax.
The mental stress of illness is as bad as the physical part. I assured her that I loved her and no matter what happened, I would have her in my thoughts always. She said she would always be with me. I told her she was the best mother in the world, and that is something every mother, spouse grandmother....whatever their role is, they want to hear because that is what weighs on their mind...."Did I do a good job?" We are such a silent and prideful society with a hard "cowboy" posture on life and in my opinion we have really messed up not being more verbal with our loved ones and friends. It's like we think we're a nation of freakin' mind-readers....which we are not. Just keep reassuring her and remember this is just the reversal in roles that we have now. They never meant to be a burden. They can't help it. I think the guilt you have is mistaken grief, grief about the inevitable. It has taken me 6 years after my mother has passed to recognize what I have is just extreme grief and missing her. I think it took me so long to recognize it as such because of family tensions that had always been present and my anger about these other family members that were never resolved that got in the way of my grieving. I don't know if that sounds familiar, but it has been true for me.
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DT I hope all goes well with your valve op. It is interesting that you relate your fear with how your Mother faces her fear. I often think how my Mum must feel stuck in her Nursing Home and not being able to walk etc, but she does not/can't? worry about me. I am tired of fearing for everyone and yet like you, I had a health problem a few years ago and could have died as I was so busy trying to sort my parents problems out, but when I look back in my life whenever I had flu etc, I received no help from them. Having said that I will continue to torture myself with trying to get things right for them and I believe you will do the same. But for now you need to put youself first, you will have the experts working on your valve and you can then look into ways of doing some of the things that you want to do. I heard an interesting true story the other day and this is it: A daughter started looking after her frail 80 year old Mother and although she wanted to move away to the countryside she decided she would care for her Mother and do the move once her Mother goes 'home' (heaven). Time passed by and on the her Mother's 105th birthday the daughter who was 79 decided that the move to the countryside had to take place, as she felt she had waited long enough. Basically, after hearing this story I thought to myself why am I living each day as if it is my parents last day. I have been doing this for 3 years now and although I don't want to lose my parents, I know the quality of my life is not normal.
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marianne18: great story. Kind of like "a watched pot never boils". I agree with your message to DT and hope we will not have to endlessly NAG him to take care of his own health. But you know how guys are. Worse than us.
"I know the quality of my life is not normal". May I quote you? Blessings, Christina
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I don't know the answer, but if she is that bad and you are that burnt out, maybe if affordable a 24 hour nurse. I know that sounds extreeme. Sometime they just get worse and there is nothing you can do. But please don't blame yourself and try not to feel guilty. Hugs
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It surprises me, although I was painfully aware, of the lack of alternatives for our parents besides unbelieveably expensive stays in a nursing home. At hundreds and hundreds of dollars a day for sons and daughters that are forced to "dump" a parent with medicaid at a nursing home simply because of the massive nursing home lobbyists, THIS IS A MORAL OUTRAGE !
After putting my mother in a nursing home, close to our home, I was so regretful and not informed at what then happens. She was only allowed one night away a month and when they gave her cigarettes and used inhalers on her at the same time, when she was made to watch 3 roommates die in the same room, when the nurse pulled up a roommate by her hair, etc. etc. etc. Then to be told, I could not change her nursing home unless she had been in a hospital for 3 days and nights....well, this entire industry is a scam. They refused to give her milk...always watered down lemonade mix. (Helps their bottom line!)
This industry needs deparately to be cleaned up. They are heartless, ruthless criminals......now let me tell you how I really feel.
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rct - This is the EXACT reason I have not been anxious to push mom to go into a nursing home. Unless you can afford one of those really POSH places that are like country clubs (good for you if you can) the care you can expect - at least around here - is totally inadequate, especially when one is used to a clean, warm, attractive, personal place to live. Mom witnessed this when my dad was in one for the last 3 months of his life (including getting served underdone chicken with the pinfeathers still attatched!) and she was terrified of going to one. RTC, if this country were truely as advanced as we like to think it is, or even as Christian as our polititians boast they are to get the votes ("you cannot serve two masters"), we would have had a proper national health program like every other civilized country in Europe and some of Asia instead of having the noose of the medical/industrial complex around our necks. I have even seen jokes about the cost of our medical on British TV! ("You should see what they charge for an asperin!) You are right, this country has a lot to learn about compassion for it's own.
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When I moved my Mother into a residential care home, the owner told me we would be "partners in Mother's care". So, I hold them to it. I speak up about everything because that is the way I am, and sometimes they don't like it. I am sure sometimes they--the woman owner and or her assistant-- do not answer their cell phones when I call. I don't care. I leave a direct but polite message and tell them to return my call when it is convenient. Sometimes I tell them 'no need to call back, I just want to leave a message about---'
Yesterday, I noticed dark man-thumb sized bruises on the backs of my Mother's hands. They were not there Saturday, so I asked the relief caregivers, who act like they do not understand me, which also pisses me off, but I remain polite and direct.
I watched the male caregiver as he got the guests up from their chairs for dinner. Sure enough, the first thing he did was to grab their hands--HIS THUMB ON TOP OF PATIENT'S HAND--and then when he got them to the front of chair, he grabbed ahold of their waists to lift them into the wheelchair. I know how difficult it is to move them after they quit walking. That is why I do not have my Mother here anymore. But, he did not use his legs as leverage to move the women, so the caregiver needs instruction. This morning I called the assistant and explained what I observed and made a suggestion that he/they be given better instructions on transferring patients.
The cost of this care home ranges from $3500-5000 a month, depending on "the level of care". The level of care is the same for everyone, and they tack on $250 a month when they call in hospice. My Mother has a private room, and it is a lovely bedroom with huge windows and door to outside. It is 15 minutes from my home in a nice neighborhood. I am there more often than most visitors, because I take my duty seriously, even though I would have been in the loony bin by now if she were still in our home. As it is, I have acquired several stress-related physical issues that I am dealing with--very slowly, because just like you can gain 5 pounds in a day from eating junk, it takes about a month to lose that same 5 pounds, and longer to heal from stress related maladies. I don't know why that is, but it is aggravating. My Mother and my sister did not have to do a job like this. I have many friends and associates in my life outside of here, who do not understand why life has been so difficult the last 3 years for me. One lady in my neighborhood is beginning the same life as a care giver to her narcissist Mother who abandoned her in childhood. Her Grandmother raised her, which was a good thing. When we see each other on the street, she just stares and shakes her head. Enough said.
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I live in England and I must stay things are improving in Nursing Homes. There is still a long way to go, but where my Mum is I know with the new Manager things are improving. Having said that, I was constantly complaining prior to the new manager and the stress was awful. Having read some of your stories in the USA I am amazed such things are happening there. Life is so unfair, we live in wealthy advanced countries, yet the care is excellent in some areas and poor in others. Legislation needs to be changed, but until someone with power and money represents this arena then we will continue to suffer.
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marianne - Are nursing homes covered in your national health? I know like anywhere else the wealthier you are the more services you can command (like some of those big old Great Houses that have been converted), but how is it for the average person who must use the nursing home facilities? I for one have always wanted to know more about your national health.
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Hi Liz....My heart goes out to you, and my prayers for your Mom....I to am in a similar circumstance, My mom suffered a massive stroke almost 6 years ago,which left her right side affected, loosing her speech and confined to a wheelchair, thankfully she has her faculties.....I am her 24 hr caregiver, She lives with me, and has for the last 15 years. Now my Mother inlaw has suffered a Hip fracture and has been in a nursing home for almost 3 weeks with minimal sucess due to her severe anxiety. and OCD she also has severe Agrophobia. But the nursing home has her so doped up she cant do PT. So my husband I are considering having her her, and bring PT in for her, she feels unsafe, there, and we basically are unhappy with the Nursing home because the are not handling her issues well at all. They are just drugging her up. My poor Mother in law is just scared to death. I know they are busy, but everytime we go in the staff is all around the nursing station and no one appears to be attending to the patients who are scattered ever place alone......I had my grandmother in a fabulous nursing home for 6 years,,,,so I know there is a difference....I just need to give her the chance to get on her feet and get off the meds they have her on....Liz I know that guilt you feel...I felt it when I had to make the decision with my Nana.....but there does come a time when you have to take care of yourself, to be there for them.....Hugs
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