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Dear shelb,
i haven’t read all your responses. I just came from visiting my LO who is in a SNF .I came away totally overwhelmed with grief that there was not a thing more that I could do for him. He has Alzheimer’s and also is not able to walk or respond legibly . The nurse aid couldn’t wake him to eat. I asked if we could get him back in bed but all the help were feeding patients. So that’s when I just broke down crying. A kind nurse told me that she’ll wheel him to the nurses station and see that he gets into bed because she said they have to use a lift. I left then feeling totally helpless, despondent, and depressed. Today was our anniversary.
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WendyElaine Jun 2021
I’m so so sorry for the heartbreak of this day. You were there for him. And he knew this. Please reach out to someone who can be there for you—a friend, neighbor. Treat yourself to something special—a meal, hair appt, whatever you enjoy. Give yourself comfort. This is a hard thing you are going through.
Sending you a hug.
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Hospitals are not good places for humans, it's just that simple. Even if one has a window, the view gets old and depressing. IF it doesn't have a window, see if you can persist in asking if another spot might be available for him. Allow yourself the benefit of a break every so many hours. I mean everyone has to go pee or eat sometime! Your dad will understand that. I think you're dealing with a heavy load, and what you're feeling is very normal. It wouldn't be normal if you did NOT feel it. But I suspect, should the end come, that you will be grateful for the sacrifices and doing what you did. Take good care and remember you're not alone...you've got all of us with you! So many of us you can be sure we're little hellions violating all the visiting hour rules!
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Shellb1087: I was the only human family member with my mother for a long time as I had to live out of state with her, providing care. After she suffered an ischemic stroke, I was quite literally emotionally and physically drained. I had to be strong under zero support and already an elder myself.
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You are not being selfish; you are under a lot of pressure with all that is going on with your father. I agree with the others - you need to care for yourself also. Being in a hospital room will close-in on anyone. When mom and I were waiting for the DR to drop by I would often go out and walk the halls.

Ask to have the chaplain visit daily, take breaks and get some fresh air, visit the chapel.

I joined one of the groups my church has on facebook. A woman does a weekly writing - this week was on grace - giving yourself grace - in other words self forgiveness. You are putting too much pressure on yourself - in such a stressful time.

Hugs and blessings.
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How far do you have to travel to visit your father?

I don't mean this to be harsh, but you must be terribly in the way. ICU is not usually set up to accommodate visitors, so unless you're taking on tasks which should really be done by qualified staff I expect they'd much rather you didn't stay so long. You say you feel that your father may miss you or feel abandoned; but has he said or done anything to show you that this is true?

if it isn't too far to come and go, it might be better for everyone if you visited for no more than one hour two or three times a day. Would you be willing to try that for a day or two and see how you feel about it?
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Find a calmness in you to bring there. This is an important time in both of your lives and he will feel more relaxed and at peace with you by his side.

I know as the hours tick by, it can feel excrutiating, but just being there is something to savor. You will wish these hard days back in the future.

If you get prescribed meds like so many in your situation, your personality and moods will flatline. You are supposed to be sad now. You will heal and this sorrow now is part of grief a step to your eventual healing.

I flew in to sit with my grandma for her last 18 hours, while she was in a coma and told her every story I could think of. The doctors said they didn’t know whether she was aware that I was there, but at appropriate times in the stories she would squeeze my hand. Now I look back on that day with gratitude for the experience and that I was able to be there for her.

I cared for my parents in my home for their last years and was with them through many hospitalizations, a hospice bounce, and their last moments with zero regret.

Take breaks, but grow stronger.
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"It's breaking my heart watching him decline in here and there's nothing I can do."

 "Any advice? Is it normal to feel you have to get out of their hospital room? Am I being selfish? How can I get through this without losing my mind over all this?"

Yes, your feelings are normal. Hospital visits are not fun for the person in or the visitor, especially in your situation.

However, you need to grow up in a hurry. You need to take control of your mind and your feelings. Your dad raised you to be a strong person. Now you get to show him his efforts were not wasted. Be there for him in his hour of real need.
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It's called ICU Psychosis. And it's very real. Your dad is being cared for - take a break. There is absolutely nothing you can do. Refresh yourself. When you go back - the excitement to see each-other will be renewed.
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Shellb, how are you doing today?
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Death takes its time. He must have a strong body to begin with to be able to continue living so long.
Questions: 1. is the prognosis eminent death? If so, get him into Hospice where he wont have all the tubes and machinery and can receive palliative care. 2. If the Doctors --and you--- think your father has a chance of life, then start thinking about the next step in his recovery. 3. Does your father know that you love him? I'll gather it's a YES. SO.... missing a day won't hurt anyone. Missing every other day wouldnt be bad either. 4. does your doctor or nursing staff have a prognosis? They are the ones you must confer with-- right away, and don't be put off. Ask for a case evaluation. (I happen to be a religious Christian. When I was in that situation -several times- I recall the rooms. After awhile you wonder if there is any air coming in. For me, I spent time praying for my loved one --that he have an easy death in his own time; that both he and those who love him would have a sense of peace knowing that he was giong to heaven ---the best place to be. This may not be your road to take. I would also talk to the hospital chaplain--- they are of great comfort if you are religious or not.
Bear up. You are a strong woman. You can make it through this!
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Selfish? Seriously, how many people do you know who would do what you have been doing? You are so far from selfish that it is ridiculous. I sure hope you are doing better and feel better. Your post has made me cry, you are a wonderful daughter and a wonderful person.
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I haven't read all the posts since I first commented, but something just occurred to me - "ICU psychosis."   One of the friends in my father's church was also on staff at one of the hospitals we relied on during Dad's long convalescence.  He had developed MRSA for the second time, and was in ICU again.  Or perhaps it was VRSA that time... 

This doctor told us that there definitely is a phenomenon known as ICU psychosis.  I think he explained that after I commented on all of the beeping machines and how it was sometimes difficult to think clearly.
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It's perfectly normal to feel panicky. You are afraid to lose the one you love which is a very scary feeling. It can be very understandable to feel guilty for even leaving the room because you would hate to not be present if he should happen to get worse. I would keep in very close contact with the nurses if you happen to leave. I'm sorry you're feeling this way. Hardly anybody would even want to be in an ICU room all day.
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