Burned out and depressed.

I'll let hospice in and see what they do. I'm a retired nurse with a good bit of experience seeing people "in extremis" - gravely ill and near the end. If the hospice people seem to be screwing around, I can revoke having them involved. I figure I'll tap into every resource and take what I can use.

I've done homecare nursing with patients who had hospice involved. Plus I've had patients in nursing homes who got hospice services. I wish I had kept a journal. They basically push morphine. That has its place. I'll see what happens.

I remembered you were a nurse - just concerned bc this is someone very close to your heart vs someone that you can hold at a distance from your heart when it becomes required much easier..

He and I have been a couple for a very long time. There's a lot of love, despite all the ups and downs our relationship has gone through. He's been my soul mate. I don't like losing him. I'll miss him terribly. I'll care for him while he's here. Then I will move to a different phase of my life. I'll cross bridges when I get to them.

I will be here when you need someone to help you through n listen to the anguish you feel in your grief. *hugs*

Strength, peace and comfort to you both.
Thank you for your account of what's going on.
Personally, I would be interested in your assessment of the different medical agencies (VA, etc.) and departments involved in your partner's care - when time and energy permit.

It's difficult to be in your shoes hence feeling what you're going through is something I can try to imagine but can't feel. It would not be sensible if I claim to do so.
I'm even finding it difficult to fetch words which could console you. I just wish that you and whoever going through hard times be relieved of their stress.
I'd just sat that hardness Congress only to the strong ones, only if you are capable of bearing it. Making you even stronger. Keep yourself motivated.

Well, Rohag, I have plenty to say. I'll start with a big piece of basic advice.

I would advise anyone who is a veteran and who also has other health insurance, like Medicare, to get established in BOTH systems simultaneously - especially if the individual is a senior or disabled or having serious, chronic health problems. Yes, you can be a client of your nearest VAMC AND ALSO a client of one of your local civilian healthcare systems. That means you get established with a primary care provider in both camps. Maybe you prefer one and focus primarily on one, but show up to see the other at least every, say, 18 months or so. Here's why. The VA does some things very well. They will offer you some benefits you won't get anywhere else. But the VAMC may have clinics that are overbooked. They may lack some specialties, or not have enough MDs in a given specialty. The ER (or ED) at the VAMC may be less crowded and optimal for certain emergencies. But it's hard to beat a university-connected teaching hospital for broad scope of specialist expertise. Then again, your local urgent care practice is where you want to go to get an embedded splinter taken out of your foot. On the other hand, not all Urgent Cares are created equal. Be wary of allowing a nurse practitioner to diagnose anything. (I consider them better at helping manage a known problem than at troubleshooting a new problem.) If the Urgent Care Center does not have an actual MD there, then I might pass it by.

My guy is primarily a client of the VAMC (his choice.) They have a Home Based Primary Care Program for fragile or very elderly individuals. It's been great for my guy and for me. The VA is particularly generous about giving you any "stuff" you may need. Durable equipment from them tends to be top-of-the-line. But you might wait a bit to initially get an item - like a hospital bed. But what you get is top-shelf. We get unlimited amounts of important disposable supplies (like gloves) and handy stuff like bottles of cleansing foam.

But, right when my guy was well into treatment for cancer, our local VAMC "lost" its oncology dept, which had consisted of one, lonely oncologist (whom we loved.) So my guy now gets his cancer care at a hospital operated by a university with a medical center. He is far better served there, in terms of cancer care.

Lately he's been going to the ER a lot. Sometimes I take (or send) him to the ED at the VAMC. Sometimes we use the ED at the university hospital. I'm glad we have two options. Our VAMC is a lovely, charming facility. I like when he's there. It's real friendly to vets and their families/friends. They have nice, cozy waiting areas where I can even lie down and take a nap. (The staff will gladly give me a pillow and blanket.) At the big, university medical center, I sat for 30 straight hours on a hard little chair next to his bed in the ER. Sometimes the VAMC ED under-appreciates how sick he is. If we go home and I feel the problem was not fully addressed, then I might wait a few days to see how he fares. If it's not so good, I next get him over to the other ED where they don't miss much. (e.g. At the VA they say he's got a viral bronchitis. We go home, and I don't like how he looks. So we go to the university hospital, and they say he's got pneumonia. BTW - reading Xrays is not an exact science.) So we're working both systems, and I'n glad we are.

I could go on, but enough for now.

God bless you and your partner Rose. I always check this thread first when I come onto PC. And think of you often. Sending you both peace and strength.

I am thinking of you, @Rose76, and I am keeping BOTH of you in my Thoughts and Prayers! Keep trying your best! (I wrote this message yesterday but for some reason I forgot to send it! )Sending many safe, warm hugs to BOTH you, @Rose76, your Family, your Friend, your Boyfriend and ALL of your Loved Ones! Keep fighting and keep rocking NO MATTER WHAT HAPPENS, OK?!

Thank you. I get through one day at a time. He and I are doing okay.

A hospice team came by today. I thought it would be a friendly meet-and-greet. They started interrogating my S.O. about his religious practices and telling me they could help with funeral arrangements. I was furious at these strangers walking in and talking their death-talk and butting in about private stuff.

Today was the 5th lengthy meeting I've had with hospice people. What a racket. So much of my time taken up.

Caring for my S.O. is becoming exhausting. There's not enough hours in the day. I'm very sore from the amount of lifting I do.

Strength to you, Rose and Friend.

Was the hospice team from a private or government or other agency?
Situation, time, focus, energy permitting, I would like to get your impressions of this hospice practice or of hospice practice in general. But--please take care of yourself first.

The team was from a private, for-profit agency. This agency only does hospice.

"Hospice" represents an unnecessary fragmenting of our healthcare system.

They bribe families into using them. People think they need "hospice" to get a hospital bed or a commode. Medicare wiil pay for those things without a person being on hospice. Then they do provide things like disposable briefs. So that saves families a few dollars. (We already get those through the VA and thru our Medicare OTC monthly allowance.)

They start you off with morphine, Ativan and Haldol. If your loved one is doped up enough, you will think they're comfortable.

Medicare wants them to talk you out of going to the ER or ED.

I took my S.O. for a cancer treatment today. The nurse at the infusion clinic felt reluctant to even give it. She said his lungs sounded so bad. She called the oncologist to ask if he was sure this was a good idea. I really appreciate the nurses not being robots, but questioning things. A year ago, a nurse at this treatment clinic said she thought something was really wrong with his breathing and recommended we go to an ER. We did, and he was admitted with pneumonia. Before each treatment, we see the oncologist. So I'm wondering how come the oncologist isn't noticing what the nurses are picking up on? This oncologist specializes in lung cancer, so he ought to be pretty quick to notice things like labored breathing. He ought to listen to my guy's chest. Today the nurse said she couldn't hear any air going in and out of the left lung. So next time we're in that doctor's office, I'll suggest, "Hey, maybe you ought to listen to his chest." Then I'll ask, "How does each lung sound to you?" One hates to thing that you have to remind a doctor of what to do, but . . .

I don't know who to trust. I don't trust any of these doctors. Three years ago, doctors at the hospitals were telling us to get on hospice and stop coming to the ER/ED. That was before there was even any diagnosis of cancer. My S.O. was getting recurring bouts of pneumonia. They said I was letting him eat stuff he couldn't swallow right, and he was inhaling his food. Now, in retrospect, we know he had lung cancer way back then that hadn't been diagnosed. Food might have had nothing to do with the frequent lung infections.

When they figured out it was lung cancer, it was already stage 4 cancer. I don't understand why doctors didn't suspect cancer sooner, when they knew he had been a heavy smoker for a large part of his life. (I don't know why I didn't suspect that, myself.) I wish I had kept a journal of all these hospitalizations. I wonder how many residents of nursing homes have major things wrong with them that have just never been diagnosed?

So, more recently, doctors at the hospitals have said my guy is too weak to handle treatment for cancer. Meanwhile, the oncologist seems to think he might feel better, if he got treatment. So I have to wonder who do I believe?

Every time I've brought him to the hospital, he left feeling way better than when he went in. Yet doctors don't want us showing up in the ER/ED. I think they believe society has already spent enough money on him.

As a retired RN, I am glad, and not at all surprised that the nurses pick up on things first. Nurses work with, not for, doctors and are responsible for their own practice. Nursing focuses more on the whole person, and a doctor often relies on the nurse to do assessments and bring concerns to his/her attention. Hospice can be a good thing but I have been upset lately as I learn that many are now "for profit" companies and only want to get 'involved' at the very end of life. It's not how it is meant to be. It is supposed to provide those who choose hospice with support and supplies and education' and a big reason it is not what it should be today is that these companies do not have Hospice Houses (they don't make money) which is an integral part of Hospice care; basically a place where the dying person can be in a home-like setting but with 24hr nursing and assistance (thus relieving the caregiver). ER/ED are not well equipped or meant for end of life care and much of what they provide could be done at home or in another setting. I am so sorry you are going through this.

The "hospice team" made an initial visit with us 9 days ago. Five minutes after coming through the door, the social worker said she could "help with funeral arrangements." Who asked her? Where did she get off bringing that up? Hospice in this country has become a cult of death. Their outlook is: "We're not afraid of death and neither should you be." So they try to introduce "death" into the conversation to show how natural they regard it and how brave and unshaken they are in the face of it. Easy to be that way when it's not you, or someone you love, who is dying. My bf knows he is dying, and he's quite brave about it, but he doesn't need his face rubbed in it by these creeps. They want to discuss "his bucket list" and "his goals" and his religious beliefs. I felt like saying, "None of your d*** business."

I engaged the services of the hospice provider in the hopes that they might have knowledge of how to relieve respiratory distress. We are not interested in all this other intrusive, presumptuous "stuff." I'm certainly not interested in discussing the afterlife with a "chaplain-for-hire." They give you a pamphlet describing the dying precess in excruciating detail. The booklet tells how the dying person is simply going to "another city" to join up with those who have "gone before," who will be happily awaiting to welcome the new member to their ranks. It's "new-age spirituality," a generic religion that seeks to reassure all and offend no one. Hospice, as it is thus practiced, hasn't much to offer as a medical specialty . . . so they throw in all this "holistic" stuff to try and fluff out the meagerness of what they have to offer, medically. Their medical interventions seem to boil down to morphine, Ativan and Haldol. Yes . . . Haldol! Reminds me of how they sedate and chemically paralyze a prisoner being executed . . . so that the execution will be less disturbing for those who witness it.

This is all about Medicare trying to reduce spending on the elderly. It's an attempt to bribe the dying and their families. "Give up expensive hospital visits, and we'll pull out all the stops on making the dying person "comfortable." The word "comfort" is thrown around ad nauseum. Who doesn't want that? But it's a false dichotomy . . . a false choice. Doctors working for hospice agencies don't have access to special secrets unknown to the rest of the medical profession. It's a scam. Whoever figures out how to guarantee dying comfortably will win a Nobel Peace Prize. No one's been nominated for that yet. No one's figured that out yet.

Because he's a veteran, my s.o. can pursue getting expensive immunotherapy cancer treatment, paid for by the VA, while simultaneously being a client of hospice. (Non-veterans must choose one or the other.) So I am getting every resource for him. But hospital doctors resent us doing that.

Is this part of the VA's National Precision Oncology Program?

No, it's not. I was unaware of that VA program.

To elaborate a bit further, Rohag.

Our local VAMC had only one oncologist, here on a temporary contract. Initially, he ordered some genetic testing that led to him selecting immunotherapy as the treatment modality. He used the same medication used on Pres. Jimmy Carter. - Keytruda. "Immunotherapy" is less harsh than traditional chemotherapy. It doesn't directly seek to kill rapid metabolizing cells as "chemo" does. I would liken it to a vaccine. It helps the patients own immune system be better able to identify and attack cancer cells. There's no loss of hair. It's safer for someone like my s.o. who got diagnosed late and is very frail.

Our VAMC lost the one oncologist and failed to find a replacement. So all veterans here needing cancer treatment were "vouchered" off to get their treatment elsewhere. A local university hospital now treats my s.o. This medical center does participate in a national genetic screening program that matches patients with "targeted therapies." Tumor cell samples are sent off to a specialized lab in Boston set up to do genetic testing. I guess not every lab does this sort of very cutting edge research-based testing. So I'm pretty confident my s.o. is getting the best treatment option tailored to his specific tumor genetics.

It seems that cancer treatment research is making impressive strides. Your article cites how the VA healthcare system is trying to get veterans with cancer the best of what's becoming newly available. Though the VA healthcare system has had its challenges, I think it also has its strengths. I believe in it and support it.

The political right in this country hates the VA healthcare system. They call it "socialized medicine" which is absolutely correct. A few years ago they started the "choice" program to allow veterans to be sent elsewhere in their communities for services inadequately provided by the local VAMC. Sounds like a good thing. But when the right pushes a program to help people, you have to look carefully at what their real aim is. They favor anything that will deflect vets away from the VA medical centers and towards other providers of healthcare. So my s.o. now gets treated at a non-VA hospital, with the VA paying for that treatment. Initially, the government was paying that bill. Trump's administration has now told the VA that it must cover all expenses of the "choice" program. Something fishy is going on here. Seems to me that it would be cheaper for the VAMC to hire another oncologist - no matter what salary it had to offer - than to pay for all these vets to get cancer treatment elsewhere. I don't get why they can't hire another oncologist and have their own oncology dept up and running.

One can make a respectable argument for doing away with government-run hospitals for veterans. One can argue that veterans are being put into a kind of healthcare ghetto, segregated in their healthcare from the rest of the healthcare consuming public. But I'm not too trusting that the motives of people on the right who make this argument are all that respectable. VA medical centers actually do a lot of things very well. Our local VAMC has improved tremendously over the past decade. My s.o. has gotten lots of excellent care there. I like that it's one-stop shopping. He hasn't needed to run all over town to see specialists scattered all over the map. I think it's an interesting model of how to organize healthcare that can teach us something. I'ld like to see the VA healthcare system survive. But there is a political element in this country that wants it to fail.

My right upper arm has become very painful. I think it's from lifting and moving my bf around. It's getting worse every day. Now I'm not sure the cause. I think washing dishes bothers it too. I take pain killers that help a lot - Vicodin. They allow me to keep using the arm. But that's why it's getting worse.

I'm not sure what to do. I think it's some kind of muscle strain and tendonitis - deltoid, I think. Sometimes I can barely stand to lift the tea kettle. I use 2 hands. I fear causing permanent damage, if I don't stop using this arm for anything requiring exertion. What I do often doesn't hurt much, while I'm doing it, but the next day the pain is there worsening.

I need to get more help with his care and the cooking and dishes. But people come in and they don't do things very well. If I have him go temporarily to a nursing home, I think he would do very poorly.

I think about seeing my pcp (she's not a doctor) but I think the only real fix is to stop overusing my arm. My s.o. doesn't seem too worried about me straining my arm. Last night I got real upset about him wanting to get out of bed at midnight. I told him I have to move him less. He has just enough dementia to be hard to reason with sometimes.

I never before cared that I didn't have a lot of money. When you or someone you love gets sick, that's when money is great to have. If you can hire competent people to do what needs doing, then everything can be alright. We have these home attendants who get sent in, but they really aren't that much of a help. The main one I don't let lift my bf hardly at all. She just doesn't have the skill. She was offered 40 hrs/week. She manages to show up 20 hours. Basically I send her to the laundromat to wash his clothes and towels and sheets. I do the cooking and the hands-on care. I can drop laundry off at a wash-and-fold service. It is not much more expensive to do that, than to supply the attendant with quarters and laundry products. I just have her do laundry to give her something to do. I do the showers. It's like the help is no help. Another attendant we have is strong and can move my bf around, but she's only here 7 hrs/week. Hospice wants to send someone for "bath visits." They allow an hour for bathing. That's not enough time to do complete hygiene on a non-ambulatory patient who can't even use a washcloth by himself. He needs total care. That's where it's good to be able to afford to hire the people you want, to be here when you want them, for as long as you want them. These agencies send in people who don't expect to have to do much. The main reason I have them here is to act as sitters, so I can leave the apartment to go to the store and do other errands. While I do that, they mainly sit and watch TV with my bf. Seldom are these attendants "self-starters." I have to specify what they are to do each time each one of them comes. I have to say, "When the dishes in the drying rack are dry, please put them away." I have to specify exactly what to offer my guy to eat, or they'll just give him jello. And I better have the food cooked and ready to just be heated up in the microwave. I'ld faint from shock, if one of them offered to make a hamburger.

Well. this is getting to be a whine . . . but I'll go on. They love to use the microwave because having to wash a pot is such a burden. Who doesn't know that you can't heat up soup in a styrofoam bowl? Somehow I doubt they do stuff like that in their own kitchens when they are at home. BTW, I do keep just about every size and type of paper and plastic disposable item that you could imagine. Once in a while, something runs out.

My bf is part of the problem. He'll tell the attendant that he's not hungry and doesn't want them to make him anything. Two minutes after the attendant leaves, he'll say to me, "What do we got around here to eat?" or "Take me to the bathroom."

I could put up with a lot of this, except now I'm waking up every morning with serious pain. I have to lighten the load on me, but don't want to settle for things being done half-arsed. I guess I'm not good at delegating.