End of life care. Any advice?

I went through this with my Dad in January. He was already in the late stages of LBD and I didn't know. He fell and broke his femur. He had a hip replacement but refused to get out of bed. He failed 2 swallow tests. He also did not want to be kept alive via artificial means. Doctor asked how aggressive I wanted to be. To me, that meant they didn't think he was going to make it. He was already emaciated at 6'2 maybe 100 lbs. I opted for hospice as I did not want to go against his wishes and insert a feeding a tube. He was placed in hospice Thursday evening and passed the next Tuesday. It was one of the most difficult things to watch. I visited him every day and told the nurses to let me know when they thought it was close. They called me Monday afternoon. I went and something told me to stay the night. I did and I'm glad I did because he passed about 205am Tue morning. They gave him pain meds and Ativan to keep him comfortable and to help with his breathing. He was not conscious at this point but I still talked to him, played him Elvis music, etc. I was with him when he passed and it means so much to me. I still feel extremely guilty. What if I took him to a different hospital, what if I would've given feeding tube maybe he would've regained strength and gotten better but I know he didn't want that and made it clear in his Living Will. The what ifs still eat me alive but I also know he had issues swallowing prior to the fall, was eating very little and wanted to lay down all the time. I now know that he was already in the end stages of his LBD. His doctors never sat down and explained the stages of LBD so I learned after that fact how the disease progresses. Hugs and prayers to you. It's very difficult but as her POA, I think it's best to follow her wishes. She will be kept comfortable and surrounded by loved ones. The hospice house my Dad was at let people visit 24/7, stay the night, etc.

Unless your mom is in the hospice unit in a hospital, or at a hospice house, the answer is no, hospice staff and volunteers don't stay. They teach the caregiver how to do some basic tasks and check in. I'm a hospice volunteer, and I visit my client four times a week for about an hour, just to keep her company in this case.

Family members can absolutely stay. Hospice is all about comfort and support, for you, your mom, anyone close to her. They have chaplains if you like, a social worker, nurse, and nursing care, plus us volunteers.

You might try to reframe what you call this horrible journey and think of it as a gentle end to a life of someone who was deeply loved. She will be lucky to die with her family around her. It's heartbreaking, but it can also be a profoundly beautiful experience.

I'm glad you're honoring her wishes to not be kept alive by machines. It must be very hard for both of you to go through. Is her hospice going to be done in the actual AL, or another facility?

I'm sorry that you're having to go through this with your mom. It will be up to you how often you want to be with her in her final days. Hospice should be better to give you some sort of a timeline, though only God knows the day and time that He will take her Home.
My husband was under hospice care in our home for the last 22 months of his life, and when he started his dying process, hospice told me he would be dead in 3 days. Long story short, it took 6 weeks for my husband to die with not eating for 41 days and not drinking for over 25 days.
So just enjoy whatever time you have left with your mom and make sure that you leave nothing left unsaid.

Hospice staff will not and can not stay 24/7 when someone is dying. But most Hospice do have Vigil Volunteers that are specially trained to sit/stay with a patient that is Actively Dying.
There are indications, changes that the body goes through at End of Life and when they are actively dying. Breathing changes, skin color changes are two that are watched for. The Nurse or CNA can describe these changes so it is not frightening for you.
Hospice will make sure that mom is comfortable.
When the body begins to shut down there is no feeling of hunger like we get. The body stops processing food and in many cases to give food at that point can be harmful.
((hugs))

*side note*
This past week someone on this forum mentioned a YouTube video "Hospice Nurse Julie" I have since watched a few of the videos and she is to the point, informative and well worth watching some of the videos.

Both of my parents lived in AL and Memory Care AL when hospice care was called into the facility to care for them during end of life. Neither one of them had to move, but were kept until they passed, with hospice seeing to their care in house. They do not stay 24/7, nor do they come daily UNTIL the end is very near; once that is determined, the RN will generally come every day. Until then, the CNA comes 2x a week to bathe your mom or give her a bed bath/sponge bath, the chaplain comes once or twice a month, same with the social worker, and the RN weekly. She'll get supplies as needed, a hospital bed, and if she's bedbound, supplies to make sure she doesn't get bedsores (mom got booties so she didn't get bedsores on her heels), chucks, briefs, wipes, meds, and things of that nature. Family is allowed to stay with the resident as much as is allowed by the ALF; I went daily to stay with both of my parents until they passed.

Mom's RN asked me before she'd get the hospice doc to write a prescription for pain or anxiety meds; after I okayed it, then the staff would administer the meds to mom as needed. Low dose morphine was given to mom when she became bedbound (the last week of her life) if she grimaced or yelled out in pain when being turned, which was a sign of pain/distress. Mom was semi-comatose as soon as she became bedbound. Anti-anxiety meds were doled out for the two months mom was on hospice b/c she was Sundowning something FIERCE. The Ativan helped a LOT, thank God. Speak to the RN about meds, and how you'd like them to be doled out, etc.

It's a difficult journey to travel, that's for sure. I'm sorry you're going through this, and I wish you peace and Godspeed throughout. Sending you a hug, too, and my condolences for your impending loss.

I just recently went through this with my mom. We are not sure but I believe she had a stroke and ultimately passed early November. I made the decision to bring her to my home but prior to that transition, I stayed with her at the ALF.

At home, Hospice did not / nor would they stay 24/7 but did send a nurse when I needed it. I hired private care for the nights and stayed with her during the day. As her conditions deteriorated hospice was there. I do not know what I would have done without their guidance and expertise.

Simple things like reading her body language and positioning her in the bed to be more comfortable. People tend to focus on the meds they give for comfort but in my experience, it was much more than that. They offered ME a companion that helped guide me through those last hours.

In my case, the meds came a few hours before she passed. She had some terminal agitation just prior to her passing, The hospice nurse administered the meds for us and gave us instructions on how to provide the additional meds if needed,

You are in my prayers. It is very difficult to lose a mom. It will be some time before I can recover from her loss,

razz,

Because your post was from 5 days ago, I have to assume that things have progressed markedly and that either your mom has passed and is now living in a whole new body of light or that you and family are in the vigil phase.

I was a Hospice RN and carry many end of life insights, but I've also had to make that same call as MPOA for my Dad, when it became clear that he wouldn't survive off the vent that he was placed on and I made the call to have removed because he'd have never wanted, almost to word, what you convey in your last sentence. He lasted less that an hour after the vent tubing was removed; pain meds were on board in his final days and he barely roused from the induced comatose state required for the vent.

It is heartbreaking beyond any words to lose a beloved parent and I'm still grieving, we all are.

Since your beloved mother had, when you posted, not been taking in anything buy mouth for a couple days and systems were in process of shutting down, her brain was already producing natural opiates (among the reasons that Hospice doesn't give tube or IV feedings); the body provides it's own pain control with the dying process. RNs are attuned, as is family, to the subtle cues that indicate pain in a dying person. Pain meds are administered to cover pain and restlessness.

As you know by now, the decision of whether or not family stays at bedside for the vigil is individual to each family. Staff is not able to be there due to others' needs and Hospice can sometimes provide a volunteer companion.

I hope and trust that Hospice has provided you with ample support and guidance through this journey. You described the as a "horrible journey" out of your understandable emotional anguish, but please know that your loved one is meeting her Maker and her journey is one of pure, unfathomable beauty.

I wish you and yours solace and grace during this difficult time.

Wife of 62 years , we came to Assisted Living place, we both had knees problem that we could not make the stairs. Also wife had dimentia, wife was allert but could not remember present n she was doing soudoku and also crossword, was in pain and after two years could not walk even with walker, she did ask several times if it was ok to wish to die, after a few question from doctors an clergy
I told her it was ok, she was in a lot of pain,hospice came and took over ,they administered pain medication, and wife stoped eating, after five seven days she went in a semi coma and she passed away with
I holding her hand.
we were married for more than 62 years, I do not regret loosing her, she was suffering a lot, we had a good marriage..




her hand

Both of my in-laws went into hospice care and died earlier this year. In both cases, we brought them to our home. I am happy to answer any questions you may have. In the case of my mother-in-law, she had kidney failure and would have had to have dialysis three times a week to extend her life "maybe by a few months" but either way would not be alive today. She basically stopped eating in the hospital before coming here and took only a few sips of water after that. I also think that because she had a bad bout of diarrhea during her last days at the hospital, this sped up the process. In answer to your question, no, hospice is not with you 24-7. They will come in and evaluate and give you the comfort meds, explaining each one and how to use them. After that a nurse will visit at regular intervals, (more toward the end), you will also have an aid for bathing them and other services as well as a counselor or clergy member who will visit to support you. In our house, I set up a bedroom intended to provide as much peace and quiet as possible. We put a darker curtain on the window, added soft lightbulb in the lamp. I also put an "Echo" speaker in the room so we could play soft music and the lamp was plugged into an alexa enabled plug so the lamp could be controlled by voice should she want to turn it on or off herself. We arranged everything so it did not look like a hospital and put in a chair right next to the bed so we could sit with her. We were able to spend many hours with her during that time. On her last day, I sat with her most of the day, prayed over her, sang to her (hymns and praise songs), and told her how much we loved and would miss her but it was ok to go. She died peacefully during the night with my husband by her side. When it came time for my father--in-law to go into hospice care two short months later, he was still eating upon arrival, albeit very little. He suffered from Parkinson's disease and had reached a point where he was failing swallow tests so we were doing what they called "comfort feeding" which is basically allowing them to have a few bites of very soft foods for their enjoyment as they would not provide enough nutrition to sustain life. He did ask for some things and we were able to give them to him. His decline was extremely fast, he was here less than a week but we were able to be at his side most of the time during that time. He was talking for the first day or two and told stories we had never heard, etc.
My mother is the only one of our parents still living. When the time comes, we will do for her what we did for my in-laws. It was comforting to provide their needs in their last days and while it was hard, it was worth it and we do not regret any part of it.