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?
43 Answers
Popular Questions
Related Questions
- What have you done to calm your anxiety when your loved one has entered a hospice facility?
- I have been struggling watching my mom (90) age. She has a myriad of issues (HBP, Parkinsons, Gout). How do I rid myself of this anxiety?
- Any advice on how to remain calm visiting my dying father? I don't want to break down in front of him.
- How to soothe and reassure a PD patient?
Is your dad on hospice? If he is there should be a social worker that you can reach out to. If not, please ask the nurse at the desk to call the chaplain or social worker on call. You need support right now.
It is not at all unusual to panic in the way that you are experiencing.
Now, go take a walk outside. Drink water and eat. Connect with the local hospital caregiver support group, if they have one. Or, do something for your wellbeing because it sounds like you are reaching burnout.
I did the same as you for my husband. I actually slept at the hospital with him because he had separation anxiety, and I felt guilty when I had to leave. When the pandemic hit, and I wasn’t permitted in the hospital at all, I felt a strange sensation of freedom and relief. It was also at that time that he experienced acceptance and peace with his condition.
You've probably heard it over and over, but it’s true: You need to take care of yourself to be able to be there for someone else. It’s not selfish at all.
*hugs!*
There is no “selfish” either.
Do what sustains you in the moment. Leave the room, look outside a hospital window to see if you can find some little something like a bird to focus on, just for a moment.
Feel the love your dad feels for you, and realize that his love asks only of you right now to stay as well as you can. Send loving thoughts to him when you’re away from his room.
Stressing yourself to the last inch of yourself won’t make Dad’s condition better or worse. You have a sweet and stressful responsibility to him, but don’t forget your responsibility to yourself.
You are living a life of loving him. Don’t worry about the moments you leave to refresh your spirit. Instead, honor those moments and let them bring peace to your heart.
Love for another is never lost, nor is it wasted.
When my husband would end up in the hospital(and he did quite a bit over the years)because his speech was so limited from his stroke, I felt that I had to be at the hospital as much as possible to be his mouth. I would get to the hospital around 8:00 a.m.(or earlier) and leave around 8:00 p.m. It was exhausting, but I always made sure to take breaks, and go sit in the hospital restaurant, just to get away for a bit.
We're all human and we all have our breaking points. If you don't take care of you, no on else with, so please start now. You need a good nights sleep. Perhaps tomorrow you can go to see him at 11:00 instead, and leave a little earlier. Wishing you the best.
ICU rooms are no fun. They have a smell and sound that are distinctive, and you never forget. At least I don't. The last time my Dad was in one last summer, I was hungry and he had a cornbread muffin with his lunch he didn't want, so I ate it. For some reason every time I eat cornbread now I'm back in that ICU room with my Dad. Kind of takes the enjoyment out of cornbread now.
Just want to say, you could be there 23 hrs and 59 min and he may pass that minute you weren't there. So if you feel you need to be there, take breaks. Go someplace close by for lunch or dinner. Call a friend to join you. You can go later and leave early. Maybe take a day off.
When my dad was on hospice and at end of life in his ALF room, I kept having to leave because of feeling overwhelmed with emotions. Fear, panic, dread.....you name it, I was feeling it. How should a daughter feel during such a time? It was tough, so I had to care for myself or I knew I'd be a basket case in need of medical help in short order. So I gave myself permission to take breaks and to relax and even to cry it all out of my system.
Please give yourself permission to do the same. You deserve to. Wishing you courage and strength at this difficult time. Hugs
Is there a chapel in the hospital. I have always gone to the chapel to pray in the hospital. I would tell the nurse that I am going to the chapel and they always told me that they would send someone to get me if they needed me.
I often found peace and strength after a short visit in the chapel.
Don’t wear yourself out. Please rest when you need to.
You may want to speak with the social worker as well. Or the chaplain at the hospital.
Keep us posted. We care.
Taking breaks, for an hour or so, reducing your visit times is a good idea. Your dad knows you love him, he also wouldn't want you to be emotionally or physically exhausted watching him die.
Mt mom in law always said she didn't want anyone around when she took her last breath. She got her wish. 35 minutes after visiting hours was over, she passed peacefully. The doctors don't know exactly when someone will pass. All wad good such as blood pressure, breathing etc., when everyone left.
Best wishes.
Tare care of yourself you have a husband who needs you too.
Sorry for my downer message. But this is my experience.
I don't know the age or physical ailment your father has, but if it is "end stage" you may want to discuss with your father and family end-of-life care instead of constantly trying to save him, which can cause a great deal of suffering. DNR simply means no heroics...no chest compressions (which can break ribs) and no forced intubation. My mom was always DNR, but I made certain she was medically treated. I always kept my mom comfortable and did not let her suffer. In other words, if she were unconscious in a coma, let her go. Mom was under hospice for 2 years. But I used them like a home clinic--I got her routine labs and medications ordered. So it was all good.
If your father has a very enlarged heart and low ejection fraction, death by fatal arrhythmia such as Ventricular fibrillation is painless--they quickly go unconscious and die without suffering. With a DNR order, they let them go since they will have to be revived using CPR (chest compressions and intubation). Anything else such as pneumonia they treat like fluids and antibiotics.
DNR/hospice should be discussed with your father (if he is able) and family. It is called Advanced Directives. If your father is unable to make decisions you need a family conference what to do next.
Meanwhile I hope you got pre-planned funeral or cremations arrangements. When he dies you must find a funeral home very quickly because the hospital cannot store the body for long. If he has no pre-arrangements, you make that a top priority. Do it now. All of that will be thrust upon the family when he dies. You also need estate planning, and a will. Who will be trustee. That sort of thing.
IF your father wants everything done, then you honor his wish and this cycle will continue until he dies. Possibly with broken ribs from CPR. But that is how ugly "full code" is. Life can be very ugly and cruel because that is life.
I miss my mom. But mom died very peacefully and I do mean peacefully, and her ordeal of living is over. I suffer her loss everyday -- but she is forever free with everlasting peace.
I kept my mom out of the hospital except when she had to have a feeding tube. I got that put in because I did not want her to die slowly of dehydration which can take weeks. I did it for comfort. To this day I'm glad I did it because mom's needs were all met and she really truly died peacefully. THough that was a last resort because feeding tubes are a LOT of work to keep patent and clean, and free of infection. I used a tube top from Amazon to cover the tubing. Mom never bothered it. Not once. Yes she was still a DNR even with the feeding tube.
Mum is at home, her situation is not that bad but lately she is shrinking I think she is 25kg and she is suffering a lot because of her back (vertebral fractures). I take care of her, we (my husband, my son and myself) eat with her but I do not spend much time entertaining her. I noticed I would just get depressed and anxious. I would cry and won't be able to think clearly... This would result in worse cares. I first thought I was abandoning her but actually taking a step back is helping me to better help her. No guilt. It would just be useless that the 2 of us suffer. And I would not be able to plan all the things she needs. That is not selfishness but self-defense.
So go outside of the room and walk or read, have a coffee when you think you need it. It is not bad to care for yourself!
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.
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.
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.
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.
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.
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.
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?
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.
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!