Advice for end of life with home hospice...

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I want to share a few things I learned from caring from my mother in her last days with home hospice.


During her last few days, Mom didn't want anyone from hospice to come in. She didn't feel well enough to be bathed and she didn't want any medical personnel taking her vitals or poking and prodding her. We acceded to her request, but after the fact I wish I'd done some things differently.


My Mom's hospice has a service called Crisis Care, and if I had to do it over I would have called them in a day or two before her death. They could have done more to keep her comfortable than we could do without their help. We saw the signs that she was dying but we didn't foresee how rough it was going to be for her. We expected her to just weaken and fade away, but that's not what happened.


What happened was that Mom grew increasingly uncomfortable those last few days. She ceased being able to swallow, although she was constantly thirsty. Worse, she became unable to manage her own secretions, and she was coughing and choking repeatedly. We thought of trying to suction her throat, but I read online that that's uncomfortable for the patient and that it's ineffective because the secretions come right back. There are medications that can be provided (in patch form, I believe) to control the secretions so the person can breathe more easily.


Also, about 2 days before she died, Mom seemed to be more having more pain more often, and we needed to increase her dose of liquid morphine. Of course it tastes awful and I don't know how much she actually absorbed (it can be absorbed without swallowing). I would have tried to get her on a drip of morphine when her pain started getting bad, assuming crisis care would have provided that, or fentanyl patches, something that would have offered continuous relief without having to put something yucky in her mouth.


I would say if you have the option, call in crisis care when the loved one stops taking liquids (if they can't swallow liquids, they can't clear stuff out of their throat either) or when you start feeling that the pain medication prescribed just isn't enough. My sister and I agreed that we weren't doing enough on our own to make Mom as comfortable as possible, and decided that if she were still alive Saturday morning, we would call in crisis care then. We were just done with watching her obvious distress. Fortunately or not, she died in the early hours of that morning. If I had known what to expect though, I think we could have made those final hours considerabley more comfortable for her.


Hope my experience helps someone else on the same journey. Carla

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Katie30157 thank you so much!!! Sorry for your loss as well. I’ve had people be very rude on some of my posts as well.
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Novallentjsmom my sister basically bled to death at home. She lost 80% of her blood volume at home with her 19 year old daughter. (Her husband is a POS) Hospice had not been there to help at all, in spite of all the calls for help. My sister was not calm, not knocked out from drugs, but up trying to walk to the bathroom and freaking out the whole day!

It would have been a blessing if she had of been made comfortable! I will not go in to more details. I was made out to be stupid the first time I posted here and felt attacked. I do read here often. I have a need to know their are others who understand, even if it is a few. I wish I could find another website like this one where there was more understanding with people who didn't get the help from hospice that was promised. My sister was not killed by hospice, we knew she was dying. But they sure didn't help her go easily and comfortably as promised. They let her and my family down.

I wanted you to know that I understand the nightmare that you and the family went through with hospice. I send my prayers and blessings. I am so very sorry.

I am so very sorry that any of us here lost anyone. It is a pain I would not wish on anyone. Bless each and every one of you.
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Nova - I don't think anyone was referencing your comments. I don't recall reading them, actually. I'm sorry you had a bad experience with hospice for your father. You seem to have had a lot of loss in your family. Sad to lose so many family members; I'm so sorry.
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hi nova...I really really don't think they were talking about you. they were speaking in general - stories that have been told. but not you.
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I didn’t say hospice was bad. My brother was in in patient hospice and they were great. My sister was in Home hospice care in a different area different company and they were great. The particular hospice had come to the house for my dad was horrible. Skated around my questions or said I don’t know a lot. And weren’t there ever when we needed them to be.
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worriedinCali - I'm sorry for the experience you went through with your MIL. It would have been far worse with my Mom if we had someone outside the family taking control of the situation and restricting our access to information and decision-making. That must have made you feel so helpless and frustrated! I'm glad your MIL didn't have any pain but I'm sorry you and your family had to stumble through the experience not knowing what was going on and not having a proper chance to say goodbye. I'm grateful I was able to be with my mother full-time the last few weeks of her life, and hospice was dealing with me directly so I was kept informed and could advocate for anything I thought might help her.
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Also wanted to say that as far as morphine goes, again seems like hospice needs to communicate better because most people seem to associate morphine with pain. Morphine is not just used for pain in hospice patients. It is also used to control breathing and keep the patient comfortable. My MIL surprisingly had no pain at all during hospice. The reason the nurse began to push it 5 days before she passed, was to strictly to control her breathing and keep her comfortable. We know now that the nurse could tell this was the end. MIL had a major decline that weekend. The slightest movement cause her oxygen to drop into the 30s! Taking the lorazepam when her levels dropped wasn’t keeping her comfortable and she was struggling to breath. The morphine allowed to her to be comfortable. Without it she would have suffocated to death. Struggling to breath until the every end.
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Thank you for sharing Carla & I’m So sorry for your loss.

our hospice experience was good so I also don’t understand the naysayers. Seems to me that perhaps people should ask more questions, I’ve read a lot of stories here where it sounds like no one asked questions and hospice came in took and over. That wasn’t our experience it all. My MIL remained in control until the last 5 days of her life. Nothing was forced on her. I also think that hospice workers need to do a better job communicating. In our situation, 5 days before she passed. the nurse recommended lowering MILs oxygen from 18 liters to 12 liters and giving her morphine 3 times a day but she was unable to properly articulate why the oxygen needed to be lowered. Because of this, my husband chose to start morphine but keep the oxygen at -8 liters. I don’t know if lowering it would have made a difference.

I regret that we weren’t more involved. We could have made MILs last 3 months easier with less suffering I think. Looking back, her partner was always the one in control. He handled everything. She was diagnosed in late January or early February 2017. Her partner kept telling us the drs didn’t know what was wrong. We were led to believe her lungs were turning into scar tissue and the doctors had no idea why. I wish we had asked her directly, when he wasn’t present, what was really going on. Last fall, when her doctor started her on drug for patients with idiopathic pulmonary fibrosis, I remember sitting at the kitchen table and both her and her partner talking about her illness being idiopathic. Maybe she didn’t understand what she had, I don’t know. But they never said she had pulmonary fibrosis. They said the doctor said “it’s idiopathic and idiopathic means they don’t know what it is”. We eventually found out 2018 that she had idiopathic pulmonary fibrosis & the doctors did not know what caused it.

I regret that when we found out she had 3 months to live & entered hospice, we didn’t think to have a family meeting. Nobody asked when hospice was coming for the initial visit. In fact, neither of them initially told us about hospice. We went to see her the day after she got the bad news and nothing was said about hospice. A week later, I asked her partner if she had considered hospice and he said “oh yes she’s already on it”. I really think had we all been involved at that point and all met with hospice & listened to their plan and heard first hand what we should expect in the coming months, things would have been better. We would have been prepared to deal with her partner and his anti-hospice views. Somebody could have stepped in when MILs partner failed her as a caregiver. By the time we realized she was suffering needlessly because he was against the use of the meds provided by hospice, it was just too late IMO. We would have either had to have him forceably removed from the home or place her a nursing home. Neither of which she wanted. I came so close to calling APS one day, only thing that stopped me was a panic attack brought on when I picked up the phone to call, because I knew the implications of the call. We would be forced to remove him or put her in a facility and how could we do that to her in this horrible situation? I feel like, if we all knew what was going to happen to her physically, we would have been able to recognize when her partner wasn’t properly taking care of her & we could tell him to step aside and someone else would take over. And if they wouldn’t do it properly, they too would be told to move aside. Instead, we had her constantly struggling to breath, well meaning family members trying to feed her when her body could no longer digest food, we also had some wanting to give her drugs! In the end most of us rarely knew exactly what was going on and we were blindsided when she died! He knew she was in her last days and he didn’t tell us. Nobody got to say goodbye.
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Windy, I also don't understand the hospice nay-sayers. We would have been sunk without hospice, and we didn't even use them as effectively as we could have.

My mother only lived two months after beginning hospice care. She was feeling pretty good at first, and scoffed at the idea that she even needed hospice, but she liked having someone to bathe her regularly, and being able to call and have someone come to the house if she felt poorly at any time. Once during her brief hospice stay she fell and scraped up her arm, and she was able to have a nurse come and check the injury and rebandage it regularly, without her having to go out to a doctor or an urgent care. That was very helpful.

Mom's PCP ordered hospice when Mom's blood work came back with serious abnormalities, even though she was still feeling okay. The doc said that Mom's disorder could lie dormant for a while and then blow into a raging crisis very quickly, and if Mom refused hospital care she'd have to have hospice. That is exactly what happened. Mom was fine all week, we even went out to dinner on her birthday and she ate well. By Saturday though she was vomiting, falling down, and starting to become septic from an undiagnosed UTI. Mom's doctor was right. Luckily it was all in place for us to use the services. They were wonderful with her and with us. The regrets I have do not imply any failure or shortcoming on their part.
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Oh Carla. That was rough stuff to go through. Thanks for sharing. Very good info.

We all second guess ourselves as caregivers. I’m doing better now but my mom’s long struggle and death still haunt me a bit. She didn’t start hospice until the day she died. I so wish we’d read the signs better but she went down so suddenly.

I advise all caregivers to get hospice as soon as a doc will approve it. If the person times out in 6 months, restart. It’s done all the time. I was reading some of the anti hospice stuff here the other day. Baffling....Who are these people?
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