Is it normal to feel panicky and like I'm suffocating in this ICU room with my dad?
My dad has been in the hospital for two weeks and I've been here everyday except two days because my husband was really sick. I usually stay anywhere from 9 to 6 hours with him each day and I leave when visiting hours are over. I'm the only family he has here because he lives with my spouse and I. So I've been the only person he's seen that he loves and cares for. It's breaking my heart watching him decline in here and there's nothing I can do. I've felt pretty strong up until today though. I got here at 8:30am and will stay until 6pm but I started to panic and get anxious. I started feeling suffocated and like I had to get out of this room. I think coming here everyday seeing my dad in this condition is becoming too much for me but I'm all he has and I feel if I don't come sit with him everyday he will miss me or feel I abandoned him. I ended up taking 20 minutes to get some fresh air outside and call my mom who was a caretaker for her mother and late husband. I cried to her that I feel guilty if I don't stay in his room with him because what else could possibly be more important at this time....but truth is I'm emotionally drained and this anticipatory grief is taking over my life. 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?
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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.
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!
"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.
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.
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?
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.
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.
Sending you a hug.
It was a good insight, one which I adopted going forward. A visitor's presence can cause the patient to feel obligated to stay awake, and deprive him or her of necessary rest.
So I cut my visits back, unless the situation (such as first day in a facility or ER or ICU), so that I didn't exhaust myself. That did happen one time, a particularly trying time when the weather was frigid, I was in and out of the hospital, then a rehab center, and was exhausted myself.
If I'm so tired the next day that it's hard to get up, I know I've overdone it.
I think to paraphrase your analysis of "what else could possibly be more important at this time", I would add "balance".
When I had mom for 15 years in my home, he barely visited. Then when mom went to live with he and his wife, he got a glimpse into my world of how exhausting it was. He apologized to me for not realizing how difficult it was for me.
When he couldn’t care for mom alone any longer he made the wise decision to involve hospice. I feel that we all have done so much as caregivers. Your assessment is right on point!
I understand that feeling of wanting to be there but what happens if you collapse. You won't be any good to anyone, least of all your Father. Take care of yourself. Selfishness doesn't even enter into this scenario. You've already shown that your not. Your Dad knows you are not. So ease up on yourself. I know it's hard. I've been where you are. But you can and will get through this.
I would ALWAYS stay with my DH when he was hospitalized (he's had MANY lengthy stays) and he wanted me there 24/7. Problem was, the hospital would kick me out (thank goodness!) or I'd need to go home to just do what needed to be done there and to shower and head BACK to the hospital. All the time, DH is calling me, over and over "are you coming?" Then I would go to the hospital and he would be asleep all day long. So--I was there watching him sleep.
Last stay--only a week, I refused to stay longer than 3-4 hrs. He was really unhappy b/c I didn't 'camp out' there, but they are still super careful about covid and we BOTH had to wear masks while there. So I would get a raging headache sitting there in an overheated room watching him sleep.
I always take something to work on with my hands. Sewing, cross stitch, crocheting, ANYTHING to keep my occupied. I don't watch TV so that was not an option. And I stayed only a few hours, then kissed him goodbye and left.
He told anyone who would listen that I 'never' came to see him. Luckily, no one believed him.
For me, the anxiety of the smaller rooms was awful, just awful. I'd have to leave and go walk around the floor to help overcome a panic attack. I also had tranquilizers from my psych doc, who understood my anxiety and that really helped.
I'm sorry you're struggling. Less time in the hospital environment is probably better for you. 9 hrs is exhausting. Take time off to care for you, OK?
My dear departed MIL would tell us to go home after 10 minutes. Her 5 kids and grandchildren would come throughout visiting hours all day every day and it was exhausting HER to have to talk and "entertain" them. Hospitals are to get rest (as much as possible) and recuperate. Bless her heart, she would tell us to go home, she would call us. She didn't want a lot of visitors; I loved her so that I adopted her same thought process when I was hospitalized. Don't feel guilty. Sure your Dad feels better when you're there, but staying there ALL day, is not helpful for your mental state. I know your Dad would agree.
You do not mention diagnosis or prognosis. If your father is not going to recover it may be time for him to leave hospitalization with hospice care. If he may recover, it may take time and your almost literally killing yourself will not help you to be there during any long rehabilitation.
You need now to gather some realistic thoughts and plans around yourself. Your mind/your body are doing all they can to give you messages you need to listen to. This isn't about guilt. You are not a felon. This is about grief, and as you said, anticipatory grieving.
What have doctors said to your about your father's condition, diagnosis and prognosis. If you father is indeed dying do understand that even in the closest families the dying separate themselves (or attempt to) from the living. It was the most common complaint of families, the lack of response other than a lifted brow or an attempt at a smile from their loved one was very common. Family often is not a comfort to those who are dying as they attempt to separate into another journey none of us understand until we embark on it. I often think of it as a drugged state in which life's important moments are relived and reviewed and where we "see" those who went before us.
Please limit yourself to an hour twice a day, or two hours during the day. Considering your own health and well being is now the best way to honor your Dad.
When you are there, tell him you love him. Come and go regularly if you are able and willing to do that, but ypu do not need to be there every waking minute. Your being there will not stop him from dying when his time is up.
I have worked as an RN in ICU. I have been present when my patients have died. I have also seen most of my patients get better, leave ICU for a "floor bed", and eventually go home. I can say that you are spending too much time at the hospital. Please visit him daily - for about 1-2 hours - and then go home. You need to get rest, regular meals, and all the other things required in the course of a normal day/life. In my experience, patients tend to die when they are ready and in whatever way actually helps their families - together or apart. So please take that worry off your plate. Seeing your dad daily IS saying you care, but staying all day is saying you have difficulty, probably some emotional issues going on. May I suggest that seeing a counsellor or pastor may be more beneficial to him and you.
First, I am so sorry you, your dad and your family are going through this. It's heartbreaking.
Second, I do understand how you feel...completely.
My mother was in Hospice in a hospital setting. I stayed by her side for 13 long, excruciating days and nights witnessing her in pain...screaming. I was so scared to leave to go home to shower quickly, change and come back for fear that she would die alone when I was gone. I literally would run down the hospital halls to get back to her room as I felt guilty leaving her for even 20 minutes.
Again, I know how you feel and I am so sorry you are experiencing this. Please know that you are not alone. Your dad is so lucky to have you.
When it's your dad's time to go, I have learned, in retrospect, that he will go, whether you are right there with him or not. When it's his time to go, it's his time.
I commend you for staying there all day with him but know that if you are not there for a few hours or even days, it's OKAY. You did nothing wrong and are a loving, devoted daughter. I'm sure your mom has told you this, right?
I'm here if you need to talk or vent. I understand.
If at all possible, find someone you are comfortable talking to. The hospital chaplain or social worker, someone from your own religious organization, a psychiatrist, an understanding friend who has been through a similar time. If you take a break for an hour every day to talk things out or pray or meditate, or even to sit outside and not think at all, you will be more available for your dad when you are with him.