Hospice. How do you just sit and wait for someone to die?

Annlat

My reply is a tad late. I hope you are at peace.

Studies on coma patients who have awakened show that people can hear someone and realize their presence, even if seemingly unconscious.

Your Dad knows you are there.

You are a good person to not put him through another surgery, even though it will break your heart to lose your Dad.

As for being their 24/7:

If you talk to hospice nurses, they will tell you that often the presence of a relative prevents the person from letting go. They say that very often the patient will CHOOSE to slip out of the room into death, when a family member finally leaves the room to get a cup of coffee.

I am sorry you are dealing with this.

When you are at the hospice. Read to him. Talk to him. Pat his hand or head. Tell him you love him. Tell him it is okay to let go.

But I doubt he would expect you to be there 24/7.

i really don’t have a better answer for you - it’s heart wrenching and there is no good way to go through it. I’m sure he knows you’re there- when I went through it with my dad I just kept telling him his kids and grandkids were all set, thanks to him giving us a good start and that we appreciated everything he did for us. It was just a few days of the seemingly twilight of life, but I will never forget them

Sometimes I read to my mother who is in memory care and not very responsive. I play music on the radio that she used to like. I hope these little things give her pleasure.

This is a very hard answer to give. Everyone is different.
My husband had dementia then Alzheimer's for 10 years. At least 6 years of that time, he woke up in the morning, had a cup of coffee, maybe I could get some breakfast in him, then he was sleeping in his recliner all morning. Maybe got up to go the bathroom.
Then if I was able to take him anywhere, or fix him lunch, after which he would be back on his recliner sleeping for 4 or more hours. I would wake him for dinner, he didn't want to eat, then he would be back sleeping in his recliner. He maybe watched TV but fell asleep, and I'd have to wake him to go to bed.
When I finally put him in assisted living, when I would visit, he'd be sleeping in his recliner, unless the aides had him in the living room, on a chair, sleeping in a recliner there.
The only thing different, is that he insisted on eating breakfast and dinner out, so before he climbed in the recliner in the morning, he waned to go out for breakfast. Again in the evening, if I cooked, he wouldn't eat, back in the recliner. It wasn't my food he didn't like, because he always loved my cooking, but the act of eating he just wasn't hungry. Going out for food was his socialization. I'm sure this hasn't helped but my spouse slept at least 18 hours a day in a recliner then bed.

The OP's Dad has died Nov 6th with her able to be with him at his side, and to see him through in comfort with Hospice. Her update is further down on the thread.

Oh my dear lady, I feel your pain, I just went through this with my brother, watching him fade away from cancer in hospice. There is nothing we can do that in itself is the very problem. We are built to save, to fix, to heal, to love better, it's part of our being, to sit back and do nothing because there is nothing that can be done goes against our nature therefore it all feels so wrong. The most loving and loyal gestures you can give is your time, your words, your presence, they can feel our energy, hear our voices and sense our soft touches on their hands and face. It is a cruel process I will be honest, the guilt we feel for not doing enough it seems, or did I miss something that could have been done better, did I make a wrong decision in the hospice care plan, we tend to replay the what if's in those quiet moments as we linger waiting for them to pass and hoping to be there for them when they do. I too was exhausted, waiting, watching, praying, crying, nervous laughing, reliving stories and moments in our lives we shared, it was relenting and prolonged, eventually I did have to rest, I couldn't stand without feeling fuzzy, when I did leave that's when he died. The guilt was heavy, I was so angry at myself, then a nurse came in from hospice to speak with me, she told me this happens most of the time, for some reason family members won't let go until their loved one is gone, reflecting back in has happened that way for my father and all my grandparents. David died at 5a.m in the morning, I was there day and evening but left a night, that's when he left me. You need to take care of your needs and know that's okay, if he leaves to enter eternal peace while your gone he knew you were there for the journey, we cannot time this life ending moment only love them in the moment we are there. David passed knowing how much I loved him, I made sure that message went with him. Take care.

While there are steps to the dying process, you just don't know exactly when it will occur. In my circumstance, my mom was in hospice care in a skilled nursing facility for 10 months with vascular dementia. The last 6, she did not know me, then semi-conscious, then unconscious for the final 2-3 weeks. The last few weeks I sat with her daily for hours holding her hand, massaging her shoulders, playing music, reading my emails and various websites to her, thinking "today's the day." At some point, you have to go home, go to the store, make supper, spend time with your family, work, etc. I was not there when she actually died, but was on my way. Things work out how they should. She was the kind of person who wanted to be alone whenever she was sick, so I believe she died the way she wanted and am proud of how I walked this path with her until the very end. You do the best you can given there's no happy ending, only your own peace of mind.

We were fortunate that my parents and stepfather only lasted a few days after their final bout of illness, ie from up and around to hospital to hospice in a few weeks. But with all of them, they were ready to go. The last was my mother but she was so delusional, hallucinating etc she would have hated being like that or having others see her like that. To me that was the silver lining. They weren’t going to get better, why prolong the agony when I knew none would have been happy in the state they were in.

Wow -- I was with my dad on hospice for 2 months( we were given the idea that it may be a few weeks) - very difficult time and just as difficult taking care of my mom and the emotions that come with that. He has gotten better - went to rehab and now on home care. At the moment bed-ridden and with a cancer diagnosis he will be back there at some point in the future- I feel like I have been to hell and back. I tried my best to be there for him and when I left at night would set him with YouTube movies to watch - mostly animal planet and westerns or movies that would keep him engaged mentally- old Oscar winners. I clipped his nails, cut his hair and tried to take care of things the nurses didn't it was a super strange surreal moment - the floor we were on people kept dying around him and he pulled through. Of course at 88 I know this reprieve will not last but am thankful for the moment and terrified of the next moment that I know is inevitable.

Oh sweetie, my heart aches for you. I have been a caregiver for over 40 years - I've been with alot of my seniors when their journey ended. A good caregiver can tell when their time is near - so I do what I can to make them comfortable. Then I sit with them, hold their hands, touch their beautiful face. Human touch is very important - but most of all, I talk to them. Hearing is the last thing to go, so I tell them how much they're loved, how they enriched the lives of everyone, including mine, how blessed all were to know them. I also tell them that it's okay to let go, and to take Jesus hand, and go with him. Permission to die? Don't think so, but they sometimes seem to need to hear it. With you & your dad - share good memories, how he's been there for you, how much you love, appreciate him and all he's done. Share love, most of all. Let him go with no regrets, no guilt, on your part, or his. You're doing a great job.!! Blessings, prayers ---

Don’t read a book; unless you are going to read it aloud to yourself and your Dad. Please hold his hand, rub his neck, and talk to him. He knows your are there! Watch tv shows that he likes, even news and talk about it to him. Bring the news paper read it to him. Bring magazines he like and tell him about the articles in the magazine. Sit in his bed if you can and hug him and kiss him. You are only as bored as you want to be and think and talk to him about your life’s best times with dad.

I am going I am going through this exact same thing with my 91 year-old Mother after 2 hip surgeries. It is agonizing, and I am just trying to be grateful for spending time with her before she passes. With the virus, I was not visiting her much except for outside her senior apartment building. She is home in her apartment with hospice as of Friday and I am spending up to six hours a day with her. She has dementia and some other medical problems besides the post-surgical issues. She is not eating much -so it is just a matter of time. But we are talking and laughing and my children and my nieces are visiting and my husband also. I am trying to find comfort in that.

Make sure you got funeral home plans done.
being with someone during their last days of life helps them -- now is the time to visit. After death it is too late. Strange how people do all their visiting and give flower to the dead when now is the time to do all of that--while they are alive.

We just had to do this last week. The waiting or “anticipatory grief” is almost harder than the actual death. Once my mom stopped eating, we put her on hospice. They said it would be 72 hours, and they were correct. So I’m total it was about ten days. Those were hard days. My advice is to be with him as much as possible. Sit and talk with the other person in the room. Keep the atmosphere light. We were told they can hear us. I had just left to go home to try to sleep for a few hours. My sister was with her when she passed.

Most people die alone and maybe that’s the way they want it. Family will leave for a short time and that’s when the end comes. Be there when you can but get plenty of rest, eat regularly and take care of of yourself.

I spend time with people who are dying if they want company. I have done this for many years. Often old friends and family don't visit any more. Maybe it is too painful or they live far away. Maybe they fear death. When I was 38 I died during surgery due to massive blood loss. It was so beautiful where I went. The hospital folks took good care of me and in a few hours and many blood transfusions I came back to life. So I have no fear of death. You are doing the most beautiful thing a person can do. Keep him company, share your love with him, talk to him about the good times you had, how much he means to you. He can hear you and feel your love although he may not be conscious. You may have to tell him it is okay to leave you. That you will be alright and one day you will meet again in the afterlife. Some people need to hear that from someone so close to them. Then be glad that he is free of pain and his suffering is over. I always say that when you love someone they never leave you.

As a healthcare worker what is the advise you would give to someone in a similar situation?? I suggest you listen to what you already know

So sorry that you are experiencing this. Imagine your dad is your client, what would you do for him if you were still working: hygiene needs, rub lotion into skin, oral care, play soft music he likes, tell him that you love him, tell him that it's ok to leave... Also make sure to meet your own needs: eat regular, good meals, get sleep in a quiet room (preferably not his), and take time for your own hygiene.

As a RN, I have had the experience of clients passing from life and it appears they need to finish "life work" first. So, get the family and friends to visit. Let dad you you will handle all his financials and the home after he passes. If he has a pet, let him know who is going to care for it from now on. I even had a Catholic client with a terminal head injury who waited until she had last rites. All that :life work" being completed helps them to relax into eternity.

Ann,

I am so very sorry for your loss. Many hugs!

Sorry for your loss, Annlat.

You did well, escorting your Dad through his last days of life.
That is just how loving someone is done.

Annlat, Thanks so much for getting back to us. I am so very sorry for your loss. I am so glad you got to be there, and that your Dad was comfortable in his last time. Heart and thoughts out to you.

I think the longest 19 days of my life was when my dad went on hospice at the ALF where he lived with my mother. He was lucid and talking with us for the first week, and then things went south from there. So, for about 12 days, we had to 'watch him die', as you put it, and there's no other way TO put it. I reached the point where I was praying that God would take him sooner rather than later because it was so difficult to witness him in such a condition. Fortunately, hospice was able to keep him comfortable and relaxed, so I didn't get to witness much agitation or displays of pain, and for that I'm grateful.

I don't have any wise words to give you to help you through such a dreadful period of time. You feel helpless, and that's a terrible feeling to have, especially after having been a healthcare worker for 40 years. There's just some things we can't fix, and this is one of them.

Sending you a big hug and a prayer for a quick and easy transition for your dad to a place of pure and eternal peace.

Oh, I just saw that your dad passed peacefully yesterday while sleeping & looking comfortable, thank God. My deepest condolences for your loss, dear one.

I'm sorry for your loss Annlat.

My my dad passed away yesterday while peacefully sleeping in hospice. I had spent most of the previous day in his room. I told him I loved him and that I was there . He looked comfortable. My heart is broken now and I feel numb , but I know he isn't suffering. And thinking that hopefully he is with my mom now makes me feel better. He missed her so much, she died 15 years before.
I appreciate all the thoughts prayers and comments from everyone on here. This is very hard to go through but I know I'm not the first nor will I be the last. We meet with the funeral home tomorrow to discuss arrangements. I'm not sure what is allowed with covid here. But we will figure it out.
My heart goes out to you all. ❤

Anlat, thinking of you.

When I have sat with doing family, I’ve held their hand and just talked - how much I loved them, what a good (sister, dad, mom, etc.) they are, how they will soon see loved ones, that I would watch out for the other family members and it was okay to let go, or just sitting quietly and being with them. Playing soothing music too. Best wishes HUGS

As a healthcare worker you know more than a lot of us. Thank you for your service. There are usually clear signs of near death. Rattling when breathing is one of them. Hands and feet become purplish and other signs. Now I know this doesn't apply to everyone, but some signs are there. I sat by my fathers side at 2 in the morning. The hospice allowed entry 24 hrs a day. (In your case maybe Covid restrictions are in place.) Anyhoo, I wanted to be there while it was quiet all around. I wanted to feel HIS presence. To tell him I loved him. I wanted to tell him he did a good job with us. That he could let go now if he wanted. His job on earth was done and we were proud of him AND all was forgiven. I was able to do that and felt peace. I am now POA for my mom, as she is in MC. But for me, when I bury my mom, just as my dad, I know I did for them all I could do while they were alive. Don't get me wrong, hasn't always been easy, but don't beat yourself up, if you're not there when he passes. Tell him while he's laying in hospice, for your peace. Hang in there.

This could go one for a while--several days, a week, or longer. You can visit as much as possible, but it does not good to ruin your own health because you can't change the inevitable.

It’s never easy. It’s a mixed bag of emotions. We don’t want them to leave us. We don’t want them to suffer. So sorry that you are struggling with this.

Somehow we make it through. Sometimes they are afraid and want someone at their side. Others who are independent die after a person leaves the room.

Don’t wear yourself out. Get rest when you need it.

It is hard. I sat with my Granny for 5 days while she was in ICU dying. After day 2 she was no longer conscious. I did go home at night, but I did book time off work.

After a couple days my uncles and a couple cousins arrived from out of town and we relieved each other.

When there was more than one family member there, we told stories and reminisced. Granny may or may not have been able to heard us. Before when I was on my own with her, I talked to her a bit, but she was tired and did not want to talk. I read a book and did counted cross stitch.

In the end she died on her birthday during the night when no one else was there. I think she may have waited to be alone.