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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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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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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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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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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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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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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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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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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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I am so thankful for this website. I was starting to think I was crazy... I have been a care giver to my mom since my oldest sister passed away... I was 21 years old. I have been caring for my mom and my younger siblings all my adult life. I have lost two husbands behind my family. Well now it is at a point in my life where my mom is terminally ill and I can't give her the care she is use to having from me. I recently put my mom in a nursing home facility. She is not happy there and tells my other family she doesnt want to be there. She doesnt tell me because she knows that I have done all I can do. It was hard enough to make the decision to put her there but when I finally did it... I was able to rest better at night. It is never a easy decision to make. I felt I could handle it because I had been doing it most of my life. But her needs became more serious that I couldn't do it... It got harder and harder... so now that she is there... I moved into a one bedroom apartment not because I had to but because I didnt want anyone else staying with me... that way when they would ask I could say no and not be lying about it. I don't have the room... I told my mom social worker today that I was not bringing her out of the nursing home to live with me. I felt guilty at first but looking back I did all I could do with out losing my mind, and I know if I bring my mother back home it is only going to stress me out when I am at work. I can't do that to myself. So this website made me know that my decision to live my mom in a nursing home was the right one. God will watch over her better than I ever will... I am praying for anyone who has to go through this process.... It is extremely hard. I cried for weeks battling whether I should put her in a nursing home... it was one of the hardest things I ever had to do... God bless you all... I hope this helped someone as it did for me...
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