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

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.

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.

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.

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.

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.

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.

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

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 just read an email from Providence Health Care about their hospice workers & how someone's life can be celebrated through all stages of dying. This depends, however, on if the person is conscious or not. If they aren't, maybe you could play some soft music to comfort them. The music may prompt them to think of times in their life, which is a huge blessing. Good luck.

It's heart breaking.. and devastating 💔 Tell him how much you love him, and thank him for the sharing of life with him.. I am praying for you and your family 💔

Make it more meaningful than cartoons. Read Holy Scriptures as your beloved prepares for the Eternal Kingdom (if you believe in the Bible as G-d's Word of Creation and Redemption. I worked as an estate manager for a wealthy man, and the family decided on hospice. I did not get involved with that. He passed within days. While he was breathing shallow I read Scriptures and called his Priest....this is precious time with your dad!

sorry for the situation and thank you for what you have done in the past and doing now.  yes it is hard. I have not had to do that personally. my father passed in May and not seeing him from March until the day they called and said we should come for a visit.  he passed 3 hours after we got home.  I guess all you can do is sit and talk to him but do take a break for yourself as you will need the time to rest also.  wishing you luck

Is is very hard to wait but it feels good when they want to hold your hand. I read that even if they are asleep they can hear you. Let him know who you are and that you love him and that you are there for him. If you know he is suffering too much tell him he can go home with God.

I sat with my Mom with dementia... the last day she had a time with her hand above the covers waving and agitating they say-- which will lead to the eventual last breath. I just sat with my hand on her head--- nice and quiet. When she left us she had a look of incredible curiosity on her face and in her eyes-- like how she thought HEAVEN would be and how GLORIOUS it is ! It was a wonderful time, sitting with her.

I see a lot of good answers here. I sat with my mother in hospice through her last days. Most of the time she was sedated with morphine and lorazepam, which were both blessings in easing her last days. It was hard to sit there but I also could not see not being there. I did make a point of going out for a walk or coffee regularly both because I did hear of people not wanting to die while their loved one is there (there is even a version of "Softly as I Leave You" by Elvis Presley done in that scenario) and to clear my own head. A year later now I am so grateful I was there. Certainly not a happy memory, but a part of her life I am grateful to have shared. I really can't say why.
My brother chose not to be there at all and my sister visited twice, but not at all the last four days when the physician said death was a matter of hours. I guess that was their way to deal with it. I wondered how many times she sat by our beds when we were sick or needed help. Still it was not a time of paying back care. It was being there for her last earthly days, a kind of sharing that I can't put into words. I am grateful I was able to be there. I hope this helps.

Annlat:
Wow it was so surprising to see you have 40 years of service in the medical field. And still have half of my family and I do agree once it hits home the outlook is a little different. I have sympathy for you because I said watch my mother passed away she held on 2 1/2 weeks. Through a outside window looking in .
( window visit )
Once they called me on Sunday and said they don’t think mother going to make the rest of the day . Terrifying emotions everywhere, rushing up to the nursing home wanted to be able to look through the window and cry and tell her it’s OK to go home. With her nurse there, only to discover the Lord wasn’t ready for her yet the next day just as spry alert and singing with the pastor on that Monday she got better to see & participant in her own Home Going. This was video for me I didn’t even know that . Although I cannot be there with mother due to this pandemic there was a lot of videos and photos taken from a very good staff and members of staff‘s , hospice CNA and God‘s angels they were truly my angels for my mother . I can see changes.
when I got the window visit it was a daily or nightly visit I could see her slipping away, breathing patterns changed small frame body no longer wanted food, but she would sips of liquids and then eventually she didn’t like that going away. The hurting part is if your love ones in a nursing home you cannot be with them you cannot hold them hold her hand touch them Or even sit by their bedside until their soul & Spirt separate from their body. And that’s what hurts the most with this pandemic but if your love ones home you can love them hold their hand massage their head tell them you love them and you were there with them so they’re not afraid .
Your love one was 90 years old and he went through a surgery. With the knowledge of the information you received from the doctor this was gonna be a positive or a negative outcome. Just curious who was the medical POA I would never send my parents were that age that towards surgery but now he’s sleeping a lot and that is our sign that the body is preparing itself . As a Kalab pillar does any turns out to be a butterfly he’s preparing to get his wings and you should let him go to his transition continue to shake him and wake him disturbs the transformation more or less enables them to complete their journey. We all have to die soon some sooner than others he had lived a beautiful 90 years old he has seen it all it’s time for him to rest God bless his soul. So don’t wait on him to leave his temple he’s waiting on you to leave the room, after his time of preparation and then he will leave his soul and spirit will separate

So you need to start getting preparation and find the papers prepared for his Home Going for him they always say whatever their date of birth it’s either deport three months before or three months after I don’t know how true that is but that’s all it was true for my mother she passed away August 20, 2020 and her birthday will be November 14, 1933
. Stay encourage that’s what they keep telling me .
Yes sleeping 😴 80% of the time in 20% eventually stop eating then the body can go for two weeks without food before the organs started to shut down. Due to lack of nourishment flowing through the brain and throughout the body in the liquids to flush out the toxins. God bless you

Read your book out loud to him. Hearing may still be working & just quietly read. Rub his hand if possible- touch is wonderful. Tell him he is safe.

Just reassure your love. Let her know it is ok. Hopefully she knows the Lord! My sister and I was with mom when she passed. All week we talked and reminisced. We told her we would miss her but it was time to go. We went home at night the nurses let us know her time was getting close. It is difficult but we wanted to be with her. Prayers are with you.
DL

Imho, you are showing your love, which is ever present. Prayers sent.

I am sorry for your distress. Why don't you bring a small device with music that he enjoyed and play it for him? If you want to tell him about your day or what is happening that interested him in the past, I am sure that the sound of your voice is reassuring. I would also tell him that he is loved and that it is okay for him to leave you and that you love him and that you will be okay. You can also recall happy events that you shared with him. It is a time to acknowledge him. Touch him as touch is comforting. My first husband died in hospice. We had an infant daughter at the time. He chose to die when I left to see her.

At the risk of sounding corny, bringing music either by singing or a not too loud device to play nice, peaceful music, even some classical, will definitely make the transition much more pleasant. Music is the undisputed best option. Of course, if in the course of a lifetime Polka, per say, was a favorite type then by all means. Peace to you, and do keep the spirit up, because we all knew when we signed in, one faithful day we would sign out. Best of everything in these trying time.

The first time is the hardest.

I just did it. The first time it was my Daddy, it was in 1974 before Hospice. I kept him at my house because that was where he wanted to be. Mom would watch him at night while slept. I would take care of him during the day. I bathed him, fed him, and gave him his meds. I had 2 girls and I was home to get them home ready for school in the morning and help them with homework etc. They would sit with Grandpa and do their homework. Some people didn't think they should see their grandpa dying. So I asked them if they would feel better if Grandpa went to the hospital. They said no because they wouldn't be able to see him.

I have held my Dad, Mom, 2 Aunts, a Sister-in-Law and a lot of friends while they left this life. Try to enjoy him while you can. If he can talk to you, talk to him about his life, learn everything you can about him. There is so much I wish I had asked my Dad because I found out that my mother lied to me about my Dad so much. Tell him you love him.

My mom died on Mother's Day before breakfast and before we could get there again to see her. I think the preferred to die alone since dying in my presence might be so traumatic for me. I came to the hospital anyway and just sat with her for a while before getting interrupted by some health care worker and decided I might be in the way of things they had to do. I left to abruptly, though, and felt something was missing for months afterwards until i had a dream about that day and was able to leave in a more appropriate manner in my dream. Then everything was o.k. again.

When my friend, Beth, was nearing death and I was her P.O.A., I made sure I had picked out a casket, bought a burial plot for her and her husband and had things ready as that time approached. She had a hospital bed set up next to her husbands recliner where he would sit and watch TV and died next to him. He was pretty distraught, but I and several other friends came soon. They were already on their way to see Beth and got there in time to console her husband. I got phoned about that and came right away, then made the call to the funeral home to pick Beth up and take her there. I had some female friends lined up to do the ritual washing of the body and wrapping it for burial. No open casket stuff and she was buried the next day. Both were living in the memory care apartment I had found for them once Beth was diagnosed with Frontal Temporal Dementia and could not function very well any more. Her older husband had short term memory issues and could not process what was happening to his wife. I was a long-time friend who they chose to take charge since they had no children or close relatives. Her husband is still alive at 94 five years later and still living in the memory care apartment I found for them. He is in good health, but I am getting things ready for his burial--pre-paying while he still has some money to do this.

My 90 y.o. uncle has a diagnosis that is terminal and he was enrolled in hospice when he and the doctor decided that continuing treatment was not gaining anything. He lives in an independent apartment that he moved into just a few weeks prior to this decision. He has no relatives who live close by. About the same time COVID appeared and now no one can even travel safely to see him. His step-daughter and her son go from their home in another state infrequently. He has caregivers about 18 hrs./day. He is wheelchair bound due to weakness (his bone marrow doesn't make enough platelets and he bleeds easily, doesn't clot well, and gets tired quickly) Different family members talk to him via phone and try to keep other family members updated on his status. This has gone on for about 8 months so far and we are also at a loss about what to do, as well. He has all his plans made, his will and everything in order. It is truly a wait and see what happens. We just keep on praying that he remains comfortable and safe and doesn't get depressed since he can't see friends and family, talk to him as often as possible via phone and tell him we love him.

I lost my husband last xmas he had dementia , had to go in hospital with pneumonia , I sat with him all week and am quite sure he knew I was there but doctors assured me he was responding well, so I went home to have a rest had only been home a few hours when they rang me but unfortunately I didn’t make it on time he died ten minutes before I got there I can’t forgive myself for not being there

How do you sit and watch all the pain, restraining him?, Painful IV's, no, he doesn't want all that at this stage I wouldn't think.
The key words are what you said," He is comfortable and sleeping most of the time." There is no easy answer when it comes to death and dying. He is comfortable that is the main thing. You would much rather be with him knowing he hears you and how much you love him by being by his side.
I have been a healthcare worker for many years also, but when it came down to the pain and suffering that both my mom, dad, and first husband had towards their end of life, Hospice was the only answer, as they couldn't endure the pain anymore. It was harder for me to watch them in a hospital bed away form their loved ones most of their time, suffering, when they just wanted to be comfortable and die with their loved ones around them, at home or in a Hospice home. God Bless you and your dad.

Its not easy, my mom died last December. She lost alot of weight so when she fell she broke her hip, she was 95. After rehab she wasnt able to get up so she went to a home & I brought in hospice too. She was speaking every day and I visited her daily but I could only sit in her wheelchair as she lie in bed. Everyday she would ask me to stay...since August but I couldnt. The night she went under they called me at 3 am and I went there & held her hand. After begging my brother, who had not seen my mom for a couple of years, he finally came and I was grateful. I was spent. I got home and they called 10 minutes later saying she past. I figured she knew I was gone. I still have guilt. An aid that fed her the night before said she ate everything with gusto! YOu just never know when it will happen but do know that you will miss your loved one almost everyday. I can only say that Im glad she didnt have to go thru it alone with Covid. It would have been much harder. Hope you find some peace.

I remember when my Dad died and we had hospice come into his home. At the end, we sat by his bedside and just talked to him, touched him, kissed his cheek and said " I love you Dad" a million times. Talk to him, say prayers, call a Priest or a Minister or anyone you think might bring him comfort. Play music or anything he loved to hear. Ask the hospice workers for advice - they truly know what to do and say and are, in my opinion, Angels on Earth. God bless u and I pray for peace for you and yours.

From watching my mom, then my husband, then my dad die slowly all I can say is that it’s a type of battle. They need to go but their body fights to the end to stay. I came to realize there just isn’t much you can do but be there for them. Not so much for them but for the peace that you know you were there for them. Don’t feel bad for needing to rest. They would want you to. If they are getting pain meds and sleeping a lot that is good. Whatever you do don’t feel guilty about your own needs.

I think just having someone there, knowing someone cares, is everything. The best you can do is give them the time they need to complete the journey.