
We are 2 years into our journey with my MIL on hospice in our home. My number one concern is when she passes. I am good with caring for her (bedridden since she has been here, so yes, all of her care has been bedside). However, I have always had reservation about her passing in my house. Truth be told, I wish that our area offered a hospice facility. I think that I would have chosen that for her. Nevertheless, here we are. She is not close to passing, but I do want to prepare myself for what to expect - sights, odors, how much time it could take for her remains to be taken to the funeral home, etc. For those of you who have experienced this, what are the couple of things that you wish someone had prepared you for? Thanks so much for your input.
This is what my dad wanted to do, and he did. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.
So let's walk into his home, a beautiful South Florida villa. He'd been sick for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.
His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.
The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all that we needed between trash pickups). Always laundry to be done.
Dad crying that he wanted to die. Hospice doctors, nurses, a minister and PTs in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.
This is what dying at home looks like. I'm not doing that to my family. (And never will I allow that to be done to me again.)
I have to say that once I called hospice and told them she had passed, the night nurse was there within the hour, called the funeral home to make the arrangement to pick up mom's body and cleaned her up and dressed her. The funeral home was there pretty quickly as well. The nurse also took care of the comfort pack and disposed of the morphine.
I think we realized mom had passed around 11:30 PM, and her body had been removed from my house by 1:30 AM.
It might ease your mind if you talk privately with MIL's hospice nurse about what happens once she passes. I found them to be extremely compassionate and understanding that there were just things I couldn't do for mom myself once she had passed away, and they took care of it.
I may try and pull the nurse aside the next time she visits. Sometimes I don’t feel at liberty to have those conversations as openly as I would like because my BIL lives here with us as well. I try to be considerate of the fact that he and my hubby are losing their mother, their first parent (both of mine are deceased). So I feel like I need to ask the nurse my more matter-of-fact questions in a discreet way, know what I mean? But yes, I will talk with her about the protocol of things once MIL passes. Thanks again for your insightful response.
I can’t say I would recommend it. I would have preferred an inpatient facility. But, I know my dad wanted to stay at home. I will say that being close through out his passing, holding his hand, helping with him after death made me not fear death as much. It’s difficult to describe. I have mixed feelings. Pretty sure I need some counseling. Plan to start as soon as I make arrangements for my mom’s care. I can’t do another home hospice. To me, you need a full team of people for that. At least 2 during the day and 2 during the night. I’d be prepared for things to progress quickly.
My dad was in in-home hospice his last four months but it was increasingly difficult for my mom and for me (I live 3 miles down the road and was visiting daily). I do not think his care was optimal at home. My mom was pretty much in a constant state of nervous breakdown and not thinking clearly. The house was not safe for him. Finally I insisted he be placed in the hospice facility for a 5-day respite. He ended up passing away 3 days later while in the hospice facility. They were able to do things for him that we could not at home to keep him calm, clean, and safe.
I do feel very supported, both by family and the hospice nurses and bath aides. And we have assembled a caregiving team, and the ladies that care for her are great. Thankful for them. But as you know, there is still a LOT to manage, from supplies, to me filling in if a caregiver calls out, to prepping meals and keeping up with her laundry…whew! 😊
Since we are two years and dealing with vascular dementia as well, I don’t see us having options other than to roll with things until our watch is over. My hubby and BIL and I look out for one another to make sure we are getting rest and time away. My respite is on the daily, getting out of the house, maybe taking in a movie, running personal errands, a day trip or some vacay time with my hubby. Thanks again for sharing your experience with me.
The world is full of information now. I wish you the best.
The next day was a bit frantic, as both sisters arrived from interstate, and I checked out funeral parlours (which I wished I had done before). My M had very strong views on expensive funerals (stemming from the book The American Way of Death by Jessica Mitford). I chose the cheapest, then got told it was only for welfare cases, threatened to report them for misleading advertising, and was delighted when they changed their mind in a hurry. One up for M and me! So for M, collecting her body was 12 hours after death. As it was upstairs, they checked delicately about how heavy she would be to move. She was cremated, and we used her much loved bedspread to cover the coffin. We scattered her ashes at the beach we went to for holidays with her as children.
I was years later on the phone to my daughters who were there for their father’s death, once again over several hours. Although we were long time divorced I was glad to be there, both for them and for him.
Death is a part of life. It is nothing to be afraid of. I have good memories of it all.
The hospice nurse checked on him twice weekly for the next four months.
The during the three weeks before he passed, he was bedbound. He said he did not want any food. He slept mostly. He was on Seroquel and as needed Haldol and meds for excess secretions. He coughed at times. He was calm and quiet.
He would reach his hands into the air, or he would pull up the top sheet, perhaps trying to straighten it, I'm not sure. But no agitation.
He had a long mumbled conversation with my mom (92) in their bed--they both were talking, either to each other or to themselves, or to whomever they were imagining to be there. My mom was having what would be a rare occurence (once every 6 weeks) of non-stop talking for hours, due to her dementia.
The last two weeks my dad continued on in this manner, not accepting any food or drink, sleeping in his bed. His speech became hard to decipher but his needs were met and his mouth kept moist. Hospice visited twice weekly.
Three days before he passed, the hospice nurse called me and said he would be passing within the week. I live out of state, so I had his caregiver hold up the ipad and I had a facetime call with him. I told him I love him and that he is a great dad. (I didn't use past tense.) I could not tell was he was saying as his speech was slurred, but I do believe his last words to me were "thank you."
His final two days, he was on morphine. (The hospice nurse recognized that it was time for morphine.) It was administered on a schedule, beginning on a Thursday morning. He simply looked like he was sleeping peacefully all day Thursday.
Thursday night my mom slept on the recliner in the den. She was told he would be passing soon, so she was brought in to say her goodbye. Her dementia made her not 100% aware of what was going on, but she sat near his bedside in her wheelchair and held his hand and wept, but also seemed confused.
Friday, his last day, he had the death rattle for about 3-5 hours during the day (I forget exactly, but it wasn't long), and his breathing slowed. He was not agitated or gasping for air. Again he was simply lying in his bed on his back and he looked like he was sleeping comfortably. Even the death rattle did not seem to be causing him any agitation. His favorite music was played quietly, or birdsong was played, from Youtube.
Friday, Sept 5, 11:15 pm, he passed. It looked like he took one last breath, a quick but calm inhale, but he was not agitated or in distress. He simply stopped breathing after that and was lying still. He looked like he was sleeping. It did not appear to be a traumatic or agonizing experience for him.
Hospice was called. The hospice nurse came about 30-45 mins later to check him and determine time of death. He was covered with a sheet on his bed.
At approximately 2 am, two gentlemen from the funeral home dressed in suits came to the house. My mom was sound asleep in the recliner in the den. We did not feel she should witness my dad being taken out of the house.
The gentlemen placed my dad on a gurney. He was a veteran, so they placed a quilt on him with the American flag on it. (The reverse side of the quilt was for non-veterans.) They wheeled my dad out of the house.
We were in contact with hospice over the next few days regarding the next steps, re paperwork and cremation, but all this had been prepared when we started my dad on hospice, so we did not have to scramble around to get things done.
Hospice made the experience as good as it could have possibly been for my dad. The medications helped him relax during his final weeks.
Looking back, my dad's passing was like a car driving on a bucolic country road at dusk. No bumps or obstacles to avoid, just driving along smoothly. Then the car ran out of gas, but he coasted along steadily. Then, when he could coast no more, he simply came to a quiet stop.
My dad [93] was also admitted to hospice in August 2025. I am fortunate that I have my husband to help, and we are able to care for my parents in our home rather than a hospice facility. I also work from home, which made it much easier to care for both parents in hospice at home.
I felt quite prepared and everything was handled peacefully and professionally. It might help alleviate your anxiety to choose a funeral home now and discuss your situation.
-Mom was on hospice for 2-3 wks @ home. We all stayed at the last week & took shifts of 2 staying in the room with her so she was never alone. It’s the thing she feared most. The last 2 days she never opened her eyes. It was mostly peaceful sleep. The hardest thing I found to deal with was excess secretions. It took awhile to get the medicine balanced to keep that under control. It wasn’t awful or anything, but for me was pretty emotional. But she didn’t seem to respond to it so it was ok. As others have said, the day she died her breathing became more shallow & like one poster said, she just coasted to a slow stop like she ran out of gas. Hospice was there within 1/2 hr. & funeral home was there within about an hour or 2. They apologized for being so late & said it usually doesn’t take that long but they were finishing up with someone else.
-MIL was on hospice for 5 yrs. at home. Again, hospice was great help. Last couple days she was awake & aware about 1/2 the day. Last day she couldn’t open her eyes, but seemed to be able to acknowledge we were there. She was comfortable & resting peacefully. Same as mom, her breaths became less & less until she slowly breathed her last breath. Hospice was there within minutes because she was already on her way. We had the funeral home hold off until a couple of the kids got there so it was a few hours later. But they would have gotten there quickly if we wanted them to.
-FIL on hospice for 3 days in hospital. Very peaceful passing too. Was asleep/unconscious all 3 days.
- Dad on hospice for 1 yr. so far in a NH. He’s still with us & probably will be for quite awhile. But hospice again has been helpful explaining things.
With all 3 that passed way, hospice walked us through everything and toward the end, went through what would happen again with us. They encouraged us to call anytime of day or night, which we did a lot with my mom. Those last couple days with each, they were very helpful in keeping us calm & explaining what was going on at the time & what we could do & were willing to come out if we needed them to. It was nice knowing that when the nurse wasn’t physically there, we had someone to call & ask questions. This was on top of the regular visits.
The day after, hospice also came & picked up all the equipment.
So know that most of the time, it is peaceful. Sometimes with the help of medicines and sometimes that’s not even needed. That being said, it is still an emotional event. But most of that is because of how we are dealing with the care giving & loss, not because the last day or two was an awful experience for our loved one. I hope that makes sense.
Hugs to you & your family as you journey through this.
It was unsettling to listen to the folks from the funeral home as they prepared her body for removal from the house. We stayed in the living room. Then, we expected they would come out with her on a gurney or something, you know, laying flat. Instead she was wheeled out in an upright position. That was totally unexpected and unnerving, very very unnerving.
My husband passed in a hospice facility and I am ever so grateful for that.
For both deaths, I later called the funeral home for an appointment about decision making. Since I already knew their wishes, the actual meeting only took about 30 minutes the next day. I also asked the hospice nurse that I wanted 5 copies of the death certificate due to one person having several different assets just in case they wanted originals.
For my mother, the coronors office was also notified and the death certificate was withheld for a few extra days. She was in a different state and passed in a facility with a few extra rules and it was during COVID time. She fell a week earlier and the office wanted just to do an investigation to ensure the fall and the death were not related.
We called the nurse and she came out within an hour. I helped bathe my sister and dress her. The nurse was unbelievably caring and respectful. I didn't think I could help but decided it was the last loving earthly thing I could do for her. I'm so glad I did. Her body was removed about 2 hours later. She was wheeled out on a gurney and in a body bag. Not easy to see that but felt she was respectfully cared for by them as well.
I think one of the most difficult aspects was trying to find a way to get rid of her hospital bed. Since it had been rented and paid for, the medical supply house didn't want it back. We listed her bed on various sites, also included her Ensure and other medical supplies. A wonderful family came and were so very grateful for all that was included.
Nurse Julie's You Tube programs were so very informative and comforting. I also read her book. Prior to all my experience with my sister's passing, I was really ill informed and fearful but now I'm relieved to know that having the help and kindness of Hospice really alleviated a lot of my fears.
Just wanted to say that in terms of responsiveness, thought, participations in the Forum after asking a question YOU get the prize in all my five years here. You are so participatory.
I often try to answer as many question as I have an input to. I would estimate that we get responses from any Forum participant less than 80% of the time. Some at least do SOMETHING to let us know they read, or heard, or that some comment or another meant something.
But YOU are quite amazing in you well thought out personal responses. I can't thank you enough.
I sure am wishing you well and hoping you will update; you are in our thoughts.