Anonymous wrote:I’m the OP, and I ended up mostly working, moistening my dad’s lips, propping family photos in front of him, playing oldies on the iPad and figuring out how to sleep on the recliner in his room.

I’m hoping that, if he noticed what was going on, he was OK with that.

You are doing great and everything you can... try to get some sleep.

I’m the OP, and I ended up mostly working, moistening my dad’s lips, propping family photos in front of him, playing oldies on the iPad and figuring out how to sleep on the recliner in his room.

I’m hoping that, if he noticed what was going on, he was OK with that.

We did this. We sat bedside at my mIL's ICU room (in near coma) and then hospice for 5 weeks. We worked from AL. In the evening we took care of our kids.

We played her favorite music for her. Sometimes we put a movie on an IPAD that she maybe watched. We set up video calls daily with siblings, nephews, nieces, friends. We said prayers aloud. A lot of the time we were silent and just there.

You will feel relieved that you did this, later on. We happened to be there in the actual moment she passed and I was relieved that she didn't go alone.

When my MIL was dying (in hospital hospice) we took turns spending one-on-one time with her. During my time, I stroked her hair and told her how much her love had meant to me. I shared my fondest memories of our times together, usually memories that made me laugh.

I also assured her that we had a plan for taking care of FIL -- she moved a bit when I said that, which I hope meant she heard and appreciated what I had said.

At one point, she tried to speak and I still think she was saying "I love you." I said "I know, I've always felt your love and it will always be with me. I love you very much, too."

Anonymous wrote:

Anonymous wrote:Working, playing on your phone, reading, watching TV, knitting etc are all fine activities. And I wouldn't feel the need to stay there all the time. I would come and go, since my dad would sometimes stir and seem happy to see me when I came in.
I often found myself narrating what I was doing or reading out loud, even though he really didn't seem aware much of the time.
The idea is that your mere presence is a comfort and provides a level of oversight of his care. But--to be honest--it wasn't really quality time with deep meaning.

I felt a sense of deep meaning being there for my mother when she could not speak for herself; or coordinate anything. It felt like an honor to be there for her. The meaning was spiritual for me. We each get to define quality time for ourselves. I guess things mean different things to different people. When she passed, I had no regrets.

I know what you mean. Caring for my dying father was a profound experience.

Anonymous wrote:Working, playing on your phone, reading, watching TV, knitting etc are all fine activities. And I wouldn't feel the need to stay there all the time. I would come and go, since my dad would sometimes stir and seem happy to see me when I came in.
I often found myself narrating what I was doing or reading out loud, even though he really didn't seem aware much of the time.
The idea is that your mere presence is a comfort and provides a level of oversight of his care. But--to be honest--it wasn't really quality time with deep meaning.

I felt a sense of deep meaning being there for my mother when she could not speak for herself; or coordinate anything. It felt like an honor to be there for her. The meaning was spiritual for me. We each get to define quality time for ourselves. I guess things mean different things to different people. When she passed, I had no regrets.

I went through this last year. I would stop by after work for an hour or two and a couple of more on the weekends. I had kids in school, so I couldn't spend all of my time with him. I was studying for test for a certification in my field, so I was watching a lot of YouTube test prep stuff. We also watched some sporting events that he enjoyed.

I wasn't there for his passing. The last time I left him, it felt different. He passed in the middle of the night. I think I knew before I left.

Touch is very important and can be extremely soothing. Holding a hand, stroking a brow lovingly, a gentle massage, brushing hair, applying lotion to dry skin are all calming for the patient and help the caregiver feel connected and like they’re useful. I got an aromatherapy massage oil and would massage my dad’s feet and he liked it. At the very end, I was moistening his lips and mouth with those sponges on sticks.

OP don’t worry to much about optimizing what you’re doing. A) you can’t and B) it doesn’t really matter.

You’re there, you’re doing it. Just keep moving through it in good faith.

OP, do you have kids?

Being with a dying person in some ways resembles being there with a newborn. They are about as responsive. You interact with them about as much. You aren't really doing much, just taking care of their physical needs. Of course a newborn is eating a lot and moving a lot and so on. They are just starting their life, and just starting to grow. The dying person is doing it all in reverse.

But all you need to do with a baby is be there with them, keep them from pain and discomfort. They can't really see you yet or understand anything you are saying.

Working, playing on your phone, reading, watching TV, knitting etc are all fine activities. And I wouldn't feel the need to stay there all the time. I would come and go, since my dad would sometimes stir and seem happy to see me when I came in.
I often found myself narrating what I was doing or reading out loud, even though he really didn't seem aware much of the time.
The idea is that your mere presence is a comfort and provides a level of oversight of his care. But--to be honest--it wasn't really quality time with deep meaning.

Thank you everyone. It looks as if there are too many replies for me to reply to everyone individually without spamming.

Anyhow, again, thank you. There are a lot of great ideas here. I’m glad the consensus seems to be that it’s OK to work and play with my phone.

-OP

Anonymous wrote:If he likes or has liked a certain music, tv show ask if he wants it and played. Or play it for him for a little bit. Read a favorite story. And be quiet.

+1
They say (??) hearing is the last sense to go.
I would also say that you shouldn't feel like you need to be there all the time, but always tell him you're going to do x and you'll be back soon.

If he likes or has liked a certain music, tv show ask if he wants it and played. Or play it for him for a little bit. Read a favorite story. And be quiet.

My Mom was in a semi vegetative state at the end. I was in her room almost all the time except to get food or come home for a few hours to see my kid. I even slept on that uncomfortable couch. She really couldn’t advocate for herself. So I was there to make sure she got her medication or had the chucks changed if she went to the bathroom. And readjust the blankets and sheets we had tucked under her to shift her weight.

I also stayed with my Dad when he was in the hospital for 2 weeks. I stayed from 8am to 6pm. I even brought my lunch so I didn’t have to leave his room. He was awake and alert. But I needed to be there to manage all the doctors. They weren’t sure what was wrong with him so we had different specialists coming in. And they don’t do a great job of talking to each other.

For both of them I spent most of the time on my phone. My Dad was listening to podcasts. Not much talking. I think he just liked having me there.