On death and dying

Yep! I've had great experiences at the local CBOC. Same at the hospital in Albuquerque, once you get to the medical people you need to see. The others? It's kind of like someone finally notices you standing at their little station, and stands around like they wonder why someone is still standing there.

Exception: the people who presumably do hearing aid repairs. I would rather do it locally at full charge than deal with the most aggressively individuals I've ever met. That's the George Murphy hospital in Albuquerque.

So.
When I spoke to the Social Worker a little while back (the one who told me about respite care), I had another question for her.

I asked her, thinking ahead of possibilities in the future, how something regarding if Wally had to be in a Va nursing home worked.

My question was how much of his monthly compensation check would be held back as available for me for living expenses. It really hurt me to have to ask that, but I had to be practical.

SW said that was a good question. She said at one time she had thought that if the vet went into a NH, the monthly compensation was all still available to the spouse. I said "No way! All of it?" She said, "well, I was mistaken about that, and someone in the xyz dept told me that there was a part to spouse in the community support, but I don't know how much that is. You should either go to the xyz dept (downstairs) or call the 800 number and someone can help you.
Didn't have time that day, and when I called the number it was like a 2 hour wait. So today when I got done dropping off the notes, I went to that dept.

Modified hell raiser this time.

So I sit down with someone, ask my question. Immediate answer from her was "You don't keep any of it."

Me: That can't be true. It makes no sense. What is the community spouse supposed to live on?

Couple more passes back and forth. Then, the guy at the cubicle next to her says "You don't understand. You're not going to now get a check"

Me: Yes I know that. But you're saying he will continue to get the check, and some of that would need to be held back for the community spouse."

Him: He keeps getting the same amount, but that goes toward the nursing home.

Me: Yes, and we both know nursing homes are a lot more expensive than what his monthly compensation is. (I had to make sure I said compensation every time, because if I used the word "check", or "money" they both just reverted back to telling me I don't get any check or money. Then it had to all start again.

Him: He keeps $90 a month for incidentals.

Me: I'm supposed to live on $90 a month?

Him: I didn't say that.

Me: So the VA gives the vet the compensation, the NH takes all of it, and the spouse gets to live on the street and starve?

Him: I didn't say that.

Me: So because the spouse wouldn't have any money to live on if the vet needed care the spouse could no longer provide. the spouse would just have to keep the vet at home and end up getting injured or dying because if he went into a NH the spouse would have no money to live on.

Him: I didn't say that.

Me: So what ARE you saying?!

Apparantly nothing, because he said no more, and went back to his cubicle.

Now with the original person, she asked me where/why I was planning placement.

Me: I'm not. I'm planning for the future in case this happens. And I'm really glad I am. I can't imagine someone being broadsided with information like this when they are already stressed out over having to put someone in a facility. I don't believe this information is true, and I'm imaging someone hearing they not only won't live with their spouse anymore, but they won't have a dime to live on.

At this point, I could tell she was beginning to feel uneasy about the info she off the cuff gave me, so I went in deep.

Listen. I'm trying to grok in what universe it would make any sense whatsoever to not set aside a good portion of the living vets disability compensation to provide for the living spouse. Outside the VA, if someone has to go on Medicaid to go into a facility, the facility keeps the SS check. If there is a community spouse, and their income and/or SS doesn't reach a certain mark, the spouse also gets to keep at least some of the facility spouses check, sometimes all of it, and the gov't makes up the rest.

You're telling me that the VA, who gives an amount we are both grateful for because of the 100% disability, plus all the other benefits he's getting, isn't going to set aside enough of that compensation for the spouse in the community to live on?

So we spent the next 20 minutes researching it on the internal VA website, coming so close sometime to an answer, but no cigar.
She put out a couple of phone calls, leaving messages, and said she would call me next week.

We ended on good terms.
My goal wasn't to "show them" or even be argumentative.
But Jesus, when you know something can't be true, or when someone is going out of their way to be unhelpful. You have to speak up.

The last stop I had to make there was easy peasy. So no exciting stories to tell there.

Leaving the building, I passed the patient adovcate office, so stopped in to tell them about the initial ass hat. It was really apparant this wasn't the first report they'd gotten on him.

As an aside to my last post.

At one point I worked as the assistant to the SW in a couple of different facilities.

A brand new SW, who had just graduated, had been hired. Not critizing her as a person, but I remember one error she made due to a combination of her limited experience, and yes, her youth. I am so glad I happened to be in the office at that moment.

The elderly wife of a new resident had come in to talk to her about applying for Medicaid for him, to pay for the nursing home. They didn't have much money, or other assests. I remember her being a very sweet lady, who loved her husband very much, and was feeling guilty she could no longer take care of him.
Also, it was pretty apparant she was overwhelmed by the process, and had not been one to take care of any finances in the household. That was his job.

Anyway, they didn't really have any cash to speak of, or other liquid assests. When she was told the low amount they had to have to qualify for Medicaid, she looked worried and said "What about my house?"

The SW, again, just not knowing at that moment that a persons home is exempt if you state "It's my intention to come back home one day" regardless of how unrealistic that is.

So, she just threw out there "Oh, you'd have to sell the house and spend all that you get until you're below the limit"

The look on that womans face. I thought she was going to drop dead right there.

Without thinking, or caring I just blurted out "NO! No she doesn't have to sell her home!"

The poor thing. I still remember how at that second, she didn't know what to believe. The young SW I could tell was fuming, but zero f*cks did I give.

I explained to her at a speed she could absorb how she never had to leave her house, and why. She was teary due to stress and telling us how she had lived there umpteenth years etc. She was overwhelmed by it all.

Anyway, after she left, I let the SW know I wasn't trying to step on her toes. I don't think she still believed at that moment I was correct.

I remember saying to her that I know that at her age (yeah I said that) it was just a house. But this was the place that lady had lived with her husband, raised her children, and it was the center of her life. It was her home.

I dunno. Not really.

I felt more like "why are you interjecting your agenda into what people are trying to do?"

Everyone who goes there has got their minds on whatever doctor, department they need to see, and are just trying to make it as easy as possibe to get stuff done. It's a real bonus and makes things much smoother when they are helping rather than hindering.

More like "This is your damn job. How about you just do it? I got important stuff on my mind, and don't need to be slamming into walls."

Yeah, you're right ...it's too soon.......but trust me, after some time has passed you will be glad you put your foot down.

Stage 3A non small cell lung cancer. Spread to the lymph nodes in the center of the chest.

This was all caught because I lost my car keys, didn't go to work, and was there when his defibrillator when off and I took him to the ER.

Surgery not possible because of the center postion of the nodes. Next week we see the radiologist and he has a port put for chemo.

Then starting the week after, 6 weeks of radiation 5 times a week, and chemo once a week during that time.

That's really all I have to say.

If there has been a more stressful week in my life I'm glad I can't remember it.

No time to reflect for even a minute about the diagnosis and prognosis.
This entire week has been what feels like non stop doctors, paperwork, referrals, dealing with VA to have his treatments happen in the community, but be covered by them, and I don't know what all else. He is actually feeling really good, having drastically cut down on salt intake, which is a strain to the heart.

We're both looking forward to getting this show on the road. The last step is him getting a port put in on Monday, and the first round starts on Wednesday.

I'm following along, I hope things go seamlessly on Monday.

Ditto

Oh yeah. Putting a port in is outpatient. No big deal.

He's very thin, doesn't have any spare weight to lose. The radiologist brought up that if weight drops off they can put a peg tube in him, and I think that's an excellent idea.

I worked in a couple of nursing homes for a few years. Sometimes a very frail person would be brought in that really couldn't care for themselves at home, and had lost a lot of weight, couldn't swallow well, were being neglected, etc.

Once they put that tube in their stomach, they would get all fat (relatively) and would be so much healthier and happier. It was a joy to see their faces fill out.

Me too. I hate to see this happen.

Same here.

Update to anyone interested, and good news.

Both the chemo and radiation ended 4 weeks ago today.

It was hard to tell if the chemo had any side effects, because the radiation was really bad.

The cancer was staged at 3A because it spread to lymph nodes in the center of the chest, so it was contained on one side of the body.

Unfortunately, that meant having radiation done right over the esophagus, 5 days a week, for 7 weeks.

Essentially, it turned the esophagus into raw hamburger. So painful. Eating and drinking even a little bit was impossible unless he drank a lidocaine solution first, and honestly, the help for that diminished as the weeks passed.

Then, finally it was over, but they don't do a CT scan with the results for about 3 weeks, as the chemo and radiation keep working. Which of course meant the burn got worse even after radiation stopped. Finally, after the 2 week mark, it started getting a little better....sometimes. There was a constant flow of heavy mucus, which is normal we were informed. Lots of coughing and gunk. He had to sleep sitting up.

Just yesterday, the day before we would receive the results of the CT scan done the day before Thanksgiving, it was like someone flipped a switch. He wanted to go out, and I was amazed that he could eat an entire meal.

Today we saw both the radiologist and oncologist.
Dr. T. the radiologist said the results were even better than he had expected, and the results he got doesn't happen all the time.

He showed us the "before and after" scans, and it was really facinating. In my mind, when a mass is being radiated, I visualized it as just something all around getting smaller and smaller.

Not so.
In the before imagae, it showed up as a roundish blob.

In the current state, it's like looking at a few wisps of fog. No borders. Like it's evaporating. Which I guess the radiation does essentially vaporize it. Yeah, like little wispy vapors.
Over the esophogus there are these little, dunno what to call them, node-ish things, but they are not active at this time. I can only describe it as not exactly like scar tissue, but something like that.

They will continue to rescan him regularly, and in about 2 weeks he will start immunotherapy, which is once every 2 weeks for a year.

I don't know what the short or mid term will be, but it's nice to have a little break.

It was kinda like this.....but not even as defined. More like fog.

Huh. Looking at other before and afters on google, I guess he did have better than normal results.

I'm an idiot when it comes to understanding radiographs, but I do know that it's wonderful when you feel well enough to go out and do normal things. Good for Wally

And happy respite for you.

Well the respite is over.

A week or 2 after my last post the esopagus had healed enough that eating was again more of a pleasure than a job.

He had his first immunotherapy on 12/18, and saw the Dr. C. the ongologist right after.
He was alert and oriented, walking well, very steady.
It was expected that he would still have some of the radiation cough, but we reported that his cough was "different".
Dr. C listened to his lungs and said, "You sound clear as a bell. But go over and get a chest exray to be safe."

That was late on the 18th, and on the 19th for whatever good reason we couldn't get over there. So Friday the 20th we made it over to the radiology place.
On Saturday morning, before 8am, the oncologist on call calls me and said there are "infiltrates" in the lungs, and to go over to the ER. He said he would call ahead, and they would admit him. He said it could be some pneumonia and they wanted to get ahead of it.

Again, he walks into the hospital breathing normally, steady, in good spirits.

That was the last time he walked out of the house. Within 24 to 36 hours he was on oxygen. Within a week they had him on, don't know what it's called, still canula oxygen, but a different device.

First thought by the pulmonologist was that it was a reaction to to one of the drugs in the immunotherapy.
That was later nixed by Dr. C. He said that was not only rare, but would happen after a number of doses.

Talk of other things, but not going to bother to go into.

Then one night his oxygen dipped and he tried to get up, falling and breaking his nose, which landed him in the ICU, which is where he's been since.

Bottom line is his lungs are just constantly filling with fluid. I believe his heart is just no longer able to pump stuf around to oxygenate and not let fluids pool.

He's alert and oriented. He will get a bit better, then regress.

The ratio of patients to nurses in ICU is 2 to 1, so there's always someone there.
The nurses and I talk, and it's never "when he gets better" but "this is how he is today.

I don't know how he manages it, but he can just completely live in the moment, which is good.....but at the same time not.

He's in no way ready to talk about hospice, but at the same time doesn't ever talk about getting well enough to leave, or anything else. Most surprising and of concern to me, is that he never mentions the cats. They were a huge part of his life.

It's difficult because Dr. C needs to be the one to come in and explain many things.

Of course not that he's in charge of what I say, but it would be better if he was informed.
Yesterday I very cautiously went to the edge of talking about how he's not improving. But it's just a seed I can plant.

They have talked about the need at some point to intubate. It was one of those moments for me that hit hard when they on purpose while talking about it referred to it as "life support" a few times. Message received.



His daughter and her girlfriend came into town for a week, leaving next Wednesday. Well, girlfriend was already here for a seminar, so for her it was just a day.

I was very grateful for having girlfriend to talk to, as she's a scientist, and was able to explain better to me how it's possible to keep him from suffering if it comes to removing the oxygen part. Morphine will take the actual pain of O2 starvation away, and ativan will keep his body from becoming anxious over it.
Of course, at that point, he'd be unconscious from morphine.

The nurses in the ICU and I get along wonderfully. On day one the nurse on duty started saying something to me cloaked in an irritating euphemism. I said "Just so you know, I'm not a "thoughts and prayers" type person. I want to know what is going on, so no one needs to dance all around it"

Her response was "We're all going to get along great then"

Sorry to hear this.

It's unhappy and unsettling when these health turns occur. Went through similar back in '95 with the gentleman who was sharing my home. He'd improve and seem to be back to okay, then as if somebody snapped their fingers, he would regress.

One day the doctor (of all names it was Lazarus), asked if my friend had acknowledged and accepted what was happening. I looked at him and told him, I had not gotten their yet. Never found out if J. did.

When J. could no longer keep fluids from his lungs, a tube was inserted into one (possibly both) lungs. It I helped, as did morphine.

Clearly there is little to nothing which can be added here from me. Mainly just wanted to remind you, that although at times it may not seem like it, you aren't alone. A lot of folks are thinking of you and your man.

Yes. I don't always reply, but I always check in, because I care.