[Rose76]

My boyfriend has been in failing health the past few years. He's not diagnosed with a terminal illness, but it's clear he doesn't have a whole lot of life left to him. I've been told he probably would now qualify for Hospice. I haven't pursued that because it would tend to make his healthcare providers less interested in fighting for his life. (There's a downside to everything.) I just want him to be as comfortable as possible for as long as possible and not lose access to any form of care.

He was gravely ill in August. But, after 3 weeks of hospitalization, he pulled through. He seemed to have gotten a new lease on life. I was so pleased thinking we would enjoy another holiday season together. Now he's back in the hospital. He has a brand new serious health issue, on top of the layers of problems we've already been managing. I miss having him at home, but he can't leave the hospital with the shape he's in right now. (He's bleeding internally.) It's like whack-a-mole. Get one issue treated, and another one pops up.

I don't want to spend what time we have left together behind a privacy curtain occupying half of a hospital room. My plan was to care for him at home, which I've been doing. I admire the patience he has in being resigned to what fate drops on him. He's very hopeful and cheerful. He lives in the moment.

I was going along okay, since this started on Monday. Tonight I'm crying and sad and tired. I'm supposed to be doing paperwork to get him benefits, like recertification for Medicaid. I got behind in that because I've been so busy just caring for him. They offer help, but they make it so hard - with all the bureaucratic hoops to jump through.

Some years back: hours before my father died, I was sitting through a meeting with someone from a hospice agency hearing the shpiel about how great hospice was going to be. Finally, I thought, "I'm sitting in this meeting, listening to a sales pitch, while my father is in a room alone, possibly dying." So I walked out of the meeting and went back to sit with my father. Two hours later, he was gone.

I was doing fine till a few hours ago. Now I'm stressed and depressed. Both of us are far from our families. I have one sister who telephones and takes an interest. I have another who doesn't, and I don't know why. His children barely check in to find out what's going on. I suppose, when he's gone, they'll all want to say nice things to me. Now is when they could act more human.

This is just a rant.

[Sunflower123]

I wish I knew what to say to comfort you but I care about your situation and I'm thinking of you and I'm here if you need to talk. I think you've been incredibly strong and courageous.

[Shazerac]

My heart goes out to you in this difficult time.

I know you don't want to give up on him and I don't blame you. Have you tried talking to him about what his feelings are about this? Maybe he wants to keep fighting or maybe he feels that this is his time to go. The most compassionate thing you can do at this time is respect his wishes.

Putting him in a hospice does not mean you are giving up on him, or denying him health care. Some people do recover and leave hospice.

Also there are other options. My grandmother wanted to be at home on her own bed. The hospital helped us to arrange for a hospice nurse to come to the house. She had meds to make my grandmother comfortable, and provided intimate care that my grandmother was not comfortable with us providing. The nurse helped her into her own nightgown, tucked her into bed, massaged her a little bit. 3 hours letter she passed peacefully in her sleep.

[Rose76]

He has been very clear to me and his healthcare providers that he wants to live and wants any care that will help him live longer. I would consider it merciful, if he just didn't wake up some morning soon. He is the one who thinks he still has some life left that he very much wants every day of. He has no pain and still seems to enjoy living. He has told the doctors to try and resuscitate him, if his heart stops. That's not what I would advize. This is not a case of me trying to prolong his life, so that I can hang on to him. He loves being alive. I'm not pushing anything on him that he doesn't want.

The hospice could be at home. He mainly wants to be home, as opposed to being in some nursing home. I make it possible for him to be home. Right now he has to be in the hospital because he's slowly bleeding in his gut. It might stop.

I do a lot of his intimate care. He is more comfortable with me than with anyone else. I'm at the hospital much of the day. Then I don't sleep much at home. I'm afraid of him dying without me being there. When he's home, I do have some help through Medicaid. But they keep telling me I need to submit more documentation of his financial situation. There have been endless bureaucratic hoops for me to jump through to keep his benefit of help in the home.

It's best, I think, when someone can pass peacefully in their own bed, as your grandmother did. I hope he can have that happen.

[MickeyCheeky]

My thoughts go to you two. I'm really sorry to you have to deal with this.. the best people always leave us too soon.

[*Laurie*]

My heart goes out to you, Rose.

Based upon my own experience with ill family members, I believe that looking into hospice would be a good idea.

[unaluna]

I understand hospice at home is possible. Have you told his family the end may be near?

[Rose76]

I call his family about any significant change in his health. They seem glad that I'm handling things.

Today went well and he has improved a lot. Might come home tomorrow. I like to think we'll have a nice Christmas together.

Now that this latest thing has turned around, I'm relieved. Still, I can't lean back and figure things will be normal and stay that way for awhile. Another crisis could be around the corner. I just have to keep on top of things. I procrastinate too much. I need to stay very well organized and prepared for sudden new developments.

[Rose76]

I was at the hospital for 9 hours yesterday. He had a diagnostic procedure that took hours and was risky, so I spent those hours in a waiting area. The upshot was good. His condition has improved. Then, last night, he snapped at me. Something I was doing irritated him and he snapped at me. This happens a lot. I feel very dejected about this.

I tell myself that anyone who's been very ill and lying in a hospital bed may not have the best disposition. I tell myself not to personalize it. But I lose that argument with myself. It happens too often and is not balanced off enough by nice things. He soaks up the devotion I show him, but I don't feel really appreciated. His children tell me that he is not a very appreciative person and drove their mother nuts.

I am depressed now.

[*Laurie*]

Please look into hospice.

[Rose76]

I wasn't able to take him home today. He might be there till Monday. We got along nice today. I stayed with him a few hours. He seems much better.

Coming home to an empty apartment, I feel kind of despondent. I could use some family support. I appreciate the ones who are supportive, and some are, as best as they possibly could be - with being so far away. Someone I hoped would be isn't. I'm very sad about that. I'm breaking down now.

I should get up and busy myself with some things that need doing.

[CepheidVariable]

I'm sorry for what you're going through.

You've been on my mind a lot these last few days, Rose. And I'll continue to keep you there. May he be home soon, and share another holiday with you. And may the ones you need in your life come through for you.

[Rose76]

Thank you everyone.

Originally Posted by Rose76

My boyfriend has been in failing health the past few years. He's not diagnosed with a terminal illness, but it's clear he doesn't have a whole lot of life left to him. I've been told he probably would now qualify for Hospice. I haven't pursued that because it would tend to make his healthcare providers less interested in fighting for his life. (There's a downside to everything.) I just want him to be as comfortable as possible for as long as possible and not lose access to any form of care.

This is just a rant.

Rant away. You love a very difficult person going through the most difficult time in their life and no one is looking forward to the final outcome!

As far as hospice goes, I am guessing that as long as your SO is lucid and can think for himself--you will not be making this decision on your own. Maybe just let him know what Hospice can do for him and let him decide? Perhaps you will worry less if you put this situation into his hands. The decision to call upon Hospice is an emotional one. Have you involved him in the decision? I do not know for sure but I think people who are terminal can sense when the time is near.

[Rose76]

He does not sense that he is nearing the end. He even talks about "getting better." He has some dementia. No doctor has labeled him as "terminally ill." He's not actually "dying," in any commonly understood use of the term. That his life is drawing toward the close is something I am determining, based a many years experience as a nurse. His home health nurse seems to be of the same mind, since she agrees he probably qualifies for hospice.

The thing is he already gets home health services through Medicaid and the VA. Rebranding these services as "hospice" wouldn't necessarily bring anything new to the table. Interestingly, he denies having any pain.

Some years ago, my father got to where he was clearly "declining" on a very steep downward trajectory. I remember assessing that he probably had two months left. He died exactly 8 weeks later.

I provide most of my boyfriend's care. He likes that. We do have home health aids now who are here about 24 hours per week. That allows me time to get out of the house, without leaving him alone. I don't know that I especially want people here for more hours. That gets to feeling intrusive. We live in a small apartment, so a caregiver hanging around infringes on our privacy. He's not that easy to deal with, either. He's always quite nice to the caregiver, but he tends to just "not want" anything. I "push" him into things that he needs, like a change in position or a shower. I have yet to have a caregiver come in who has any knack for doing that. I have to "push" the caregivers into doing things. Half the time, it feels like it's as easy just to do things myself. I'll go in and find him slumped over in his chair sitting in a bad position. The caregiver will say that "he didn't want to be moved." They don't have the confidence or the initiative to just "do" things. I do his showers myself because it's just beyond them. I thought that, at least, they could shave him. That seems to be "beyond" them too. Forget cooking. If it can't be heated up in a microwave, he ain't getting it. So I prepare things they just have to heat up. Sometimes, with the microwave, you have to stir things halfways through. Getting them to do that is a lift. I must sound like a complaining crank, but I'm not exagerating. If he spills something, they clean up the spill - halfways. I bought terrycloth bibs, like they use in nursing homes. They forget to use them. He'll have stains on his shirt, and they don't think to get him a clean shirt. He likes his shirt tucked into his pants. I'll find him with his shirt tucked in - halfways. But the main caregiver is very, very nice and kind . . . so I don't make an issue of the things I just mentioned. I gently remind her to check this and that. I don't want to demoralize her. If she had him stand long enough for her to get the shirt neatly tucked in, he might collapse and fall, so it's just not that important. The pants are never on straight, and I see him pulling at his crotch because his incontinence brief is uncomfortably bunched up. I keep mindful that, while anyone is doing anything, he's saying to "hurry up." So I can't nitpick.

Hospice is supposed to be all about "comfort." No one is going to make him as comfortable as I do. I happen to have done this work myself, and I'm good at it. Plus, sometimes he has to be nagged into allowing what needs doing. Paid caregivers want to respect "his wishes." (Ex: "Icecream was what he wanted for lunch, so I gave it to him.") He tells the attendants that he doesn't really feel up to a meal. Then, then the minute they leave, he tells me, "What have we got to eat? I'm starved."

The visiting nurse got an order to double his supply of narcotic painkillers because "He's in so much pain. I can just see it." He seldom has pain. At night, he likes a Vicodin because it helps him sleep. That leaves a bunch of Vicodin unused. So I take them because my arthritis is killing me. He knows I like his Vicodin, so he complains of pain to his provider, just to keep it coming, so he can offer it to me. (No lectures, please.) There is a certain amount of comedy here, if you have a sense of humor. In the Spring, I use an expensive nasal spray for allergies. He told them he had bad allegy symptoms, so they would order him the spray. Then he gave it to me. Despite his dementia, he's quite a thinker. He knows I have trouble sleeping, so he wants to ask for sleeping pills. He's quite a character. Hospice nurses tend to push narcotics. If I got him labeled as a hospice patient, I'ld be in danger of becoming an addict.

Hospice has implications that lay people aren't aware of. For instance, you pretty much can't be admitted to ICU. In fact, you might have a hard time even being admitted to an acute care hospital at all. I don't want to limit his options. When my father got admitted to hospice, the hospice nurse said, "We won't be checking his vital signs because, in hospice, we don't believe in that." I thought that was assinine. So I kept checking his pulse. When it got to 140/minute, I knew death was imminent . . . and it was.

While I'm sure many people have had positive experience with hospice services, there are angles to it that the general public doesn't grasp. The main thing to like about hospice is that Medicare pays for it. This means that, if you have money in the bank, hospice won't cost you anything. But my boyfriend is already on full Medicaid, so he pays nothing anyways. Hospice is a money-making racket for these private home health agencies. As a nurse who worked in longterm care, I have good reason to dislike "hospice," but I won't start a rant on that.

Well, maybe I will. When I had a patient in a nursing home who went on hospice, it meant I couldn't talk to the patient's doctor anymore. I had to call the agency hospice nurse instead and let her do it. Of course, I'm the one who maybe has known this patient for many months and is actually in the facility with the patient, but the hospice nurse is presumed to know best. The nurses aids in the nursing home can't bathe the patient because the hospice agency sends their own aids to the nursing home to do the daily bath. They don't actually know the patient like the CNAs in the nursing home, but nevermind - they take over. Of course that one hospice aid who shows up may need help moving the patient, so she will be bothering the nursing home staff who have to drop whatever else they might be doing to help her because the bath must take place whenever the hospice agency that sent her has allocated time for the hospice aid to be there. Pretty soon, the nursing home aids become detached from the hospice patient.

For a hospice patient at home, the hospice agency will send a doctor and nurse to the patient's home. Do you suppose these individuls are the cream of their profession? Yeah, right . . . that's why they're working for a hospice agency. (O.P. rolls her eyes.) There are some good people everywhere in this world. I don't doubt, for a minute, that some families have had veritable saints come to their elder from a hospice agency.

"Hospice" is a multi-multi-billion dollar industry with highly paid lobbyists. Here's a link: https://nonprofitquarterly.org/2016/...rm-the-market/

I once worked for an agency that was supposed to be providing end-of-life care to a special class of individuals. It had an extremely lucrative contract with the federal government. I could have been promoted from a nurse-caregiver to a case manager. But I noticed that case manager-nurses tended to embellish their patient assessments with observations that were, shall we say, somewhat fanciful. (Like saying patients needed oxygen, who never happened to need it when I was there.) The more higher-echelon nurse supervisors had precious little scruple with what struck me as outright lying. That's how one advances one's career in a for-profit agency, like this one.

Well, that's a thing or two off my chest. I wish I could testify before Congress. A year ago, I had him in a nursing home for a few months. It was terrible. We live in a poor state. So Medicaid nursing home care is, maybe, less well funded than in a richer state. IDK, but the staff-to-patient ratio is lower than what I would see in other states that I worked in. It's a shame that nursing homes wouldn't make enough money from Medicaid that they could have sufficient staff to do all the care that all their patients need, right till the end. Then, again, some elders are on Medicaid because they put all their assets in their children's names years ago. (I've known of very wealthy families to have Mom in a home on Medicaid.) Plus most of these places are run for profit, which is also a shame . . . but what are we going to do? The day of religious entities running healthcare facilities is winding down. Do we want the government running them? Trump's Secretary of Education doesn't think governments should even be running grammar schools. Who's right? IDK. I have worked in two nursing homes that were run by local governments. Both were well above average in quality. So, call me a Socialist.

Thanks for listening.

Thanks for telling us some of the inside scoop about hospice. My experience was that we didn't call it until 1.5 weeks before my mom's death. We didn't call until she had thrown up blood, became comatose and never emerged from it. We knew she was to far gone to take to the hospital. A complete skeleton. She didn't want to go to the hospital and we weren't taking her. In the state she was in, the hospital bed and IV drip giving her pain medications was quite a relief. We had watched her suffering so much and she could not keep her pain medication down. I wished we had asked if we could ask hospice come help a bit earlier (my brother and sister were unable to ask this kind of thing--they hoped beyond hope to the end that she could beat death and were telling her to keep fighting when her situation seemed hopeless). So it sounds like hospice care is just for the very end, but perhaps a bit sooner than we chose to call them......

Not lecturing -- I have had plenty of Vicodin during my hospital stay and after dental visits. I like the euphoria it gives me. Like any downer (including Xanax which I currently take and possibly just as addictive)--I feel like it pushes me into depression to some extent if I take a lot of it. Maybe that is a function of since it make you feel good for a while, when it wears off, you swing the other way?

Concerning your situation--from what you have described--it is going to be quite an adjustment when he is gone. It sounds like it is not all bad but caring for a person at the end of their life is so intense that you don't know what to do with your time (people who have done it for a while like my sister) when you are released. It's hard. Rant away. We will be here.

[Rose76]

Hoping, you're very kind. He's home now. I'm glad. We're doing fine.

It will be tough when he's gone. This has become my job. It will feel like losing a job.

[Rose76]

Hoping, you're very kind. It will be hard adjusting when he's gone.

[*Laurie*]

So what if hospice care makes money for someone? That doesn't mean hospice isn't helpful.

[Rose76]

Originally Posted by *Laurie*

So what if hospice care makes money for someone? That doesn't mean hospice isn't helpful.

No it doesn't. Hospice can be helpful.

My husband didn't want to go to hospice--he died fighting for life. It's what he wanted. His family didn't show up for his artificial heart transplant. His mom said she had to "work." She made popcorn part time. God.

I wrote it off to them being unable to cope.

Coping is hard. Hang in there