What is the process once your loved one passes in-home on hospice?

My parents both wanted to die at home. Dad was the first to go. Their wish put an undue burden on me, and it was a horrible experience. I wrote about it:

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.)

My dad (92) began hospice in my parents' home in May. I gave hospice his funeral home and desired plans for cremation at that time.

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.

I think it is terribly cruel to the family, especially children, to have to watch their Dad die in the living room and then go right back to living in the house. I wished every family had the option to move their loved one into an inpatient hospice facility during the final weeks! Why? First of all, the family can focus on simply LOVING their terminal spouse. All the chores of caregiving are handled by the staff at an inpatient facility. Zero appointments, zero medication administration, zero worry about pain management at the end. Second, you can stay with your loved one 24/7. I took 12 hours and then my inlaws took the other each day. Our kids could come & go which helped their trauma immensely. We each had special moments because we were not overwhelmed. Third, people can visit and say goodbye without coming to your house. Nobody has to worry about cleaning, the smells, sounds, bathing their loved ones to make them comfortable & presentable. Fourth, the support. There were a few other families nearby. You will see them in the kitchen and break area. I am still friends with some of these connections that I made at that facility. I am not against ANYONE choosing to die in their home. My sweetheart's death was peaceful & spiritual. I am not sure I could of given him the same experience as home.

My husband and I have both donated our bodies to science and neither of us or our children will have any worries or expenses. First we got official state anatomy cards and keep them in our wallets. All family members know this. If my spouse dies at home all I need to do is call the police department and they come to your home and take over. They remove the body and take it to the closest hospital. Then the hospital calls the state anatomy board and they do everything else. We both feel good that our bodies will be helpful for whatever they need. Since we are both in our 70's I doubt they will harvest any organs. I have already donated one to my brother. Most of the time they are used to teach procedures to medical students. After all is completed (could be over a year) the body is cremated. The ashes can be returned to a family member or taken to the state facility to be buried. We have opted to be taken by the state. I have one third of my mother's ashes here at home and not sure what to do with them. Either one of us can decide whether to have a memorial service or have people attend the yearly memorial service at the designated city in our state. We both have copies of advanced directives and state cards as do one of our children. If my spouse dies in hospice or a hospital I just need to hand them his card. Neither of us want our children left with any of these decisions or expenses. I feel good thinking a young medical student may learn something from studying my body. Our state of Maryland only has two conditions. The body must weigh less than 600 pounds and never had any HIV. I know this route may not be acceptable to some people but it's the right one for us .

When my mom was obviously actively dying, hospice came every day and called me as well. On mom's last day, her hospice nurse told me she didn't think mom would last the night and let the night duty nurse know that death was imminent.

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.

Everyone is different , but this is what I experienced. I was desperate to get my dad help when we requested in home hospice. I was naive as to what it entailed and overwhelmed with the stress and work required. It happened over a few days. I was up around the clock at least every 2 hours, sleeping on a small sofa near his hospital bed. He was bedridden and his care was constant. The coughing and rattling in his chest was disturbing even though hospice assured me it was not painful to him. For me the stress was indescribable. I called the hospice nurse with changes as he got progressively worse, She came to evaluate. She was very supportive and helped a great deal. After he passed away (I was in the room and suddenly noticed he was quiet) I called her and she came within the hour. I waited with my dad, said my personal goodbye and hugged family members who had gathered. The funeral home came shortly thereafter. (Within a couple of hours) I wasn’t happy we had to look at the hospital bed for the next week until they picked it up, but there wasn’t anything else that lingered.

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.

Please ask your hospice provider these questions. What should you do when your MIL passes or when her condition starts to deteriorate? What should you do if you need respite care and/or if you feel you can’t continue to care for her at home? They should have staff to answer calls 24/7. I think all states offer 5 days of respite care (in a hospice facility) every 60 days. They may also have aides whom you can hire to come in to give you extra support if you do wind up keeping MIL at home.

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.

This is your opportunity to make use of Hospice by speaking to them about the details of all of this. They will have social workers for you to contact. Merely ask to meet with one and ask all of your questions. They should also have written materials and there are many books on Amazon for you. There is also Nurse Julie, the Hospice nurse who does films on youtube.
The world is full of information now. I wish you the best.

My dad died at 9:45 and hospice had the funeral director ready to take his body within a couple hours after coming in to grab all his meds.

My mother died in the night at home in her flat, with me on a trundle bed just outside her bedroom door. Yes the end of life breathing was difficult to listen to for hours. I had been waking every couple of hours, and woke next time to silence. I was glad that M had got to the end, and I felt that we had gone down the path together in triumph.

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.