I know I should be at dad's side but I just can't do it all the time...

I am so grateful to have found this Aging Care forum. In the process of these last 10 months taking care of my dad, (and last summer trying to get his house cleared out and sold), I've had many questions answered here. You've all helped me do the best job I can for him and also helped me avoid some pitfalls but most especially helped me avoid guilt. I'm not a "natural caretaker". I was able to give him quality of life while he was still easy to care for in most ways. Lately it's been exhausting and I've not been perfect but I am trying. I will miss him so much and do take comfort that he enjoyed this last year in my care (up to now... right now it's just hard and will get harder..) Thank you!

One thing to remember is that 'alone and scared' isn't always true. Just because he might be alone, doesn't mean he is scared. You're the one who is scared! And you have every right to be. I would be too.

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.

My parents were younger but I never stayed with them the whole time they were hospitalized or in rehab. As you say, they do not make it comfortable for relatives to stay. My Mom had Hospice in her nursing home. She closed her eyes the last 2 weeks of her life and never opened them again. She also would not get out of bed so I told them to let her be and called Hospice in. I visited and my last visit she was declared 20 min after I left.

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.

As a nurse I can comfort you with this: most people who are critically ill have total amnesia about their time in ICU. They remember it. And if they remember snippets of things it all bleeds together, and there is ZERO sense of time, as in how often your family is there or not.
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.

Please don't beat yourself up over what you're doing or not doing. The fact that you're just there is good enough. Your dad knows that you love him, without you saying a word.
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.

I think you’re doing fine. Accept that you’re only one person and can’t do it all perfectly. Of course there are times where conversation is awkward and hard to come by, don’t feel a need to fill every void with talking. I very much found with my parents that the final journey out of this world is a solo experience, people often go to another place we can’t imagine or see. It’s okay if you’re not there for each minute of it. Making sure he’s cared for and comfortable is your job, not trying to be there for each minute. I wish you both peace

I guess I’m not “people”. I willingly respond to QUESTIONS, and when asked off my advice, sometimes in a strong opinion, but my thinking about “what people say” is “people” should tend to their own business unless asked for opinions by other people.

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.

Hospice is a great choice. Not everyone can care for someone who is sick. It’s good that you understand your feelings instead of trying to force yourself to be there all the time.

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.

Hospice is great. You will get so much support, your dad will as well.
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.

Just holding his hand is worth so much. My mother is virtually blind and almost completely deaf, has dementia, and I haven't been able to visit her in person for a year. Needless to say, when I finally got to be with her for the first time last week, she didn't know me anymore. I knew if I could just hold her hand, she's know, and sure enough, when I held it, she grabbed on tightly and didn't let go.

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.

Try reading to him, play his favorite tunes. He knows you are there, thAt is what matters the most.