Dad has been in ICU for a week and is mostly sleeping... occasionally opens his eyes and recognizes me. Might talk for a minute.. Kissed my hand yesterday and thanked me for being a good girl... but usually I can't understand what he's trying to say. When he's not asleep, he's struggling, thrashing about and trying to get out of bed. The whole thing disturbs me so I find myself sort of sitting to the side, not really trying to connect with him. It's also uncomfortable chairs and boring. I know people say you should sit and hold their hand and talk...but he has such bad hearing (nearly deaf) and I don't know what to say besides I love you and please stay still (or similar). I'm feeling guilty that I'm not doing things right. I'm the only one in town (except my husband), so it all falls on me. He will likely go to hospice and I don't want to do it at home so I likely won't be with him when he dies (just because it will be unpredictable and because it won't be home). All of this worries me because I don't want to feel guilty if he is alone and scared. If you have been through this, please give me suggestions so I can do a good job for him.
Years ago, my grandmother was in the hospital, slowly dying of cancer. Unconscious and on hospice care. My dad and uncle (her sons) would take turns during the day sitting with her, so she wouldn't pass away alone.
My dad sat with her one morning, and left for work. Uncle was on his way there. He'd just walked into work, when he got the call. She'd died in that 20 minutes between them. A nurse had walked in, saw grandma take a deep breath, and that was it. Peaceful.
I truly think she did not want her children with her when she died. She just didn't want them to see it. Wanted to spare them.
Your father may be doing the same. Even if you aren't there when it happens, he will go knowing you loved him. He knows he'll be fine, and you will too. Peace.
I would say something to the Nurse about his struggling and thrashing around. I don't feel that this should be happening in an ICU. He should be pain free and kept comfortable. If that means he is sleeping most of the time so be it.
Please never feel guilty. You are the one there, you handle it the way you are comfortable with.
Guilt belongs to evil felons who do criminal acts for the joy of it and who take pleasure in hurting others. Sorry, that doesn't describe you. What DOES describe you is the other G-word, which is grief. You are grieving the losses for your Dad and you are grieving that there is no way you can fix this for him, and for those who must witness his suffering.
I know it is unlikely you can speak with nurses now, but they will assure you I am right. Come to the bedside as you have been doing. Do this once a day. Set up a phone tree with family to inform one another. Take turns if there is more family.
This in no way says anything about your love, nor about your Dad's needs. You can do nothing about his current needs.
As a nurse I ASSURE you of these things, and I grieve for you. The helplessness of families in this time often made me cry with them.
As to being with Dad when he dies? I can tell you dying is a private thing, and families who are constant at bedside are often disturbed when the person turns away from them, separates from them. The ancient expression "He turned his face to the wall" is there for a reason. Hospice will comfort you and speak with you. Contact them. They will also likely have your Dad medicated to a level where, again, he is not certain who is there or when. The medications will be for comfort and air hunger and to prevent agitation and pain, but the side effect is a very dreamlike place.
So I will tell you to be there when you are able. You know what you had with your Dad. That will remain with you your life long. Do what you are able. My heart goes out to you.
And when you have him taken to the hospice facility, they will let you know when they think death is near, so you can be there for his final breath if you want to. And if you happen not to make it in time, then you must know that that is how God intended it to go down, and that's ok. Your dad may not want you to have to witness his death, so just accept which ever way it goes.
I pray for peace and comfort for you and your family in the days and weeks ahead. God bless you.
You sound like a sensitive intelligent person. Happily, I do not know a lot of “people” who would tell me I “.....should sit and hold their hand and talk..” because their unsolicited advice would make me mad and I would probably feel guilty about their efforts.
When I was more myself, I’d STOP feeling “guilty” and start feeling mad as H**L that ANYONE had the nerve to try to tell ME what I should think.
My mother was placed on hospice during her last few days in the nursing home that had been her happy and comforting
home in her last days.
When her death was imminent, I asked that if she passed during the night I NOT be notified until after 5am the following morning. A fill in social worker, not knowing anything about you mother’s history or mine, attempted to shame me into staying with my mother until she died.
I refused but am left with that memory of losing her. YOU DO YOU. Your dad KNOWS THAT YOU LOVE HIM. THATISALL THATMATTERS.
Some people wish to be with their loved ones all the time, others don’t for various reasons. It’s truly a personal choice. Don’t beat yourself up.
Take care and know that your dad will receive good care in hospice.
One of the ideas with Hospice is no one dies alone. If you can not be there a Volunteer from Hospice, one that is specially trained will be with him, and you if you so wish. The Hospice I volunteer with has Vigil Volunteers they will work 4 hour shifts so that someone is not alone.
Holding his hand may also relax him so he is not thrashing around. (you could also ask about medication that will relax him a bit)
As to what to do while you are sitting there....read, read out loud if you wish. Do a crossword puzzle, solitaire, check your email, watch TV, talk to him about what is going on in your life....all the same things you would do if he were sitting at your kitchen table. And don't worry if you say or do nothing. I think so many of us are afraid of being alone we have no idea how to do nothing so we resort to phones, tablets and all sorts of things to avoid thinking about everything, anything and nothing.
Bring a book to pass the time, and just hold his hand.
Meanwhile, read up on hospice. They'll make your life much easier, so you can be there for him. Ultimately, this final journey is one he'll take alone, but you should be there for him while you can if you don't want to feel guilty. No one ever said this time was going to be easy.