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On death and dying

 
 
chai2
 
Reply Sun 13 Jan, 2019 07:43 pm
I'm not looking for advice, or sympathy. I just need to write. Maybe to hear that others have gone through the same.

I don't think my husband is going to live much longer. Maybe a day, maybe a week or few months. I would not believe it if you told me he is going to see the new year.

Putting everthing in some kind of sensible order is impossible.

He just went to bed, and I asked him, "Are you going to be all right?" and for the first time ever he said "I don't know"

Some might realize I've occassionally talked about his multiple health problems. It is so overwhelmingly complicated. His health care providers, whether they would admit it or not, are surely amazed he's been around this long. I know I am. I know he's surprised too.

He's laying in there now coughing. He hasn't eaten more than a small bit of food in the past 2 days. At least he's drinking. I'm sure after writing this, I'll wait a few minutes, and go in and ask him if he wants to go to the ER.

Please don't anyone bring up hospice. That's an entirely different subject.

He was admitted through the ER in the beginning of December, and again in the beginning of January. On an after visit to his doctor on Wednesday or Thursday, I asked about physical therapy, and she said she'd have to consult with the cardiologist. I called her back Friday, leaving a message, haven't heard back. I can't blame them, I feel like they are going in slow motion, knowing it's futile. First do no harm, and they may be following that.

He and I had an emotional conversation this morning, the contents of which will remain private. One thing that I will share was that he said he's ready, and seemed relieved when I told him I would be all right.

We've been married just over 25 years, and almost 20 of them have been so stress filled.

heh....honestly, when people come on here and write about their bullshit relationship/marriage problems about some crap about "I cooked a meal and he never came home", or "I really like this girl but don't know if I should let her know.....I really want to bitch slap them, and ask them if they have any concept about how hard life can really be.

Now, I'm older too. Past prime health myself. I don't want to be younger, but it's not fun considering how different things could have been.

He also realizes he's literally got no recall of so many years, for various reasons.

It's just hard.

Writing this helped.



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Type: Discussion • Score: 14 • Views: 5,311 • Replies: 199

 
edgarblythe
 
  2  
Reply Sun 13 Jan, 2019 07:49 pm
I offer my sympathy. I know how tough it is.
chai2
 
  1  
Reply Sun 13 Jan, 2019 07:51 pm
@edgarblythe,
Thanks edgar. I know you do.
0 Replies
 
ehBeth
 
  2  
Reply Sun 13 Jan, 2019 08:28 pm
@chai2,
chai2 wrote:
I told him I would be all right.


I find this the hardest thing to do. I'm so glad you could do it. As proud of you as a stranger can be.

You wrote something the other day that made me think of asking and then figured you're chai2 - you'll talk when you're ready and if you want to.

Got happy things to remember - great jokes/great times you shared? talk about them. My last conversation with my mother included a discussion of lilacs. My mother loved lilacs with a wicked passion. My dad and I have wicked allergies to many flowers. My mother and I talked about how she'd bring the first lilacs each spring in - put them in a vase - set them up as a centrepiece - covered in a plastic dry cleaning bag. She did the same thing with roses for my father's birthday and mine. We laughed about how funny those centrepieces looked and how she always did what she wanted, the way she wanted. Truly, it was also a little nod toward how she did what she wanted about how she was handling her death.

Letting go is hard. Gotta be strong to go knowingly - and to say it's ok
0 Replies
 
Sturgis
 
  2  
Reply Mon 14 Jan, 2019 12:30 am
@chai2,
Quote:
...and I told him I would be alright.


One of the hardest things I've ever said. Long term it was true. Short term, not so much. (35 yrs. ago and the other 23 yrs).


Over the time I've interacted with you here and read your posts/thoughts/ideas, one thing has held true: you have amazing strength. Know it, even if you start to doubt. And know that there are a lot of folks who care and will be available if ever you need - an ear, a voice, or just being .

I could ramble on now; but, it's likely not the way to proceed. So, just do what you need, my thoughts will be sent towards you.
0 Replies
 
PUNKEY
 
  1  
Reply Mon 14 Jan, 2019 12:36 am
I often wish that my husband and I had had that last conversation. Things happened so fast at the end; he went into a coma and I just crawled in his bed with him and whispered thanks for all that he had been to me and the kids.

I went home to change clothes, and he died when I was at home.

My sympathy to you at this very difficult time.
0 Replies
 
dlowan
 
  2  
Reply Mon 14 Jan, 2019 01:24 am
So glad you two had this conversation. Lots of people never do it.

Sometimes all we need is to know that the one dying is ok with it and that the one still likely to live will be ok. May well help your husband to have a much more peaceful death, and that is a damn fine thing.

So sorry you are dealing with this and that you are still having to decide stuff like going to ED or not.

Peace to both of you.
0 Replies
 
izzythepush
 
  1  
Reply Mon 14 Jan, 2019 02:26 am
@chai2,
He may have no recall of certain events but at least he knows who you are, and despite some confusion he sounds like pretty much the same person. That is something, it may not sound like much, but it is something.

When my wife was dying I took each day as it came because there's not much else you can do. I got through it though and things got better, and hopefully you should too. Take care.
0 Replies
 
jespah
 
  1  
Reply Mon 14 Jan, 2019 05:51 am
@chai2,
Listening....
0 Replies
 
chai2
 
  2  
Reply Mon 14 Jan, 2019 09:23 am
Sitting back in the fracking ER. Like I said before hasn’t eaten in 2 days, and I’m sure he’s dehydrated. This morning he was supposed to go to the eye doctor at the VA. I was curious because he asked me to take him. When I asked him if it was because he felt unsafe driving, or just wanted me there, he said “both”.

This morning when we were near ready time wise to go, he announced, “I’m not going” when I asked him why, he just said, “I don’t know, I’m just not”

I’m an expert by this time at asking him open ended questions to see where he is mentally. After awhile he told me “I don’t know if any of this is real. “ this was my warning that I might be catching him at the beginning stages of dehydration confusion.

His oxygen saturation, BP, heart rate all look fine, but I do worry about heart failure. I hope they admit him so they can order an ejection fraction test. His has been dangerously low like forever.

I’ve asked him a couple of times “does this feel real” and he says “no”. That IVis dripping pretty fast, so I’m aiming at asking him again after he’s been on for an hour.

Don’t get me wrong everyone. It’s not like he is actively dying. I just don’t foresee him being able to keep this up much longer.

I’m typing all this on my phone in the ER, so I don’t feel I can express myself well.

It has been a rocky life with him. Definitely not all kissy peaches and cream. I have well thought out reasons why I have stayed with him.
0 Replies
 
chai2
 
  1  
Reply Mon 14 Jan, 2019 05:42 pm
In no particular order.

Izzy, oh yeah he knows me and everything else. When I say he doesn’t remember times adding up to years it’s because, frankly, this guy loves his pills. When his heart problems first began, I didn’t realize that he was going out more and more and buying. When I would go with him to the doctors I would tell them that he was acting strangely, problems walking and much more, but at those times he would be straight. They would do all kinds of tests at my insistence, they would come back normal, so it was like I was the hovering crazy wife. I won’t lie and say I wasn’t aware of some of that, but not to the extent of what was going on. When it all came to light, I felt like I was married to Walter White. The point is, he can be a sneaky bastard.

This may bring up the questions of why didn’t I leave. I was really blunt with him when the whole truth was uncovered that I wished more than anything I could get rid of him, but that I also knew if he left he would be dead within 2 weeks, and I didn’t want that on my conscience. Also, ending it would make no financial sense. Like the difference between a nice home, and each of us in advancing age (now 72 and 60) each living in an awful one room apartment, studio or even rented room in a house, and me having to go out at this age looking for full time employment which would pay crap. Hey. I’m a realist. It’s all well and good to tell someone “well leave him”, but when you look at what life would be like, it’s pretty ugly, and no better than the situation you’re in, in other ways.

That’s another thing here. All these people who write in with “He’s a great/perfect guy” crap. Yeah, except (fill in the blank). People don’t want to say someone else isn’t perfect because they don’t want that to reflect the fact poor choices were made. We’ve all made dreadful choices. But sometimes the solution is worse.

Anyway, enough of that.

Sturgis, yeah I’m strong. Sometimes that’s good. Sometimes it means being the only one who will ask the hard questions, be the bitch (that’s only if you’re a woman though), make sure stuff gets done, and done right, and to hell with stupid niceties that many times others rely on you engaging in, when they are using them to cover up their poor performance.

I’m back at the hospital in any event, as I went home to take a nap, and got a call from this over the top chipper white girl who works in registration who brightly told me like it was the best news in the world that they coded him as admitted for Medicare but that actually he was just there for observation and may go home tomorrow and isn’t that so great!

No chipper white girl, that’s the furthest thing from great. This one s the 3rd time in 45 days he’s there for the same damn pneumonia that apparently hasn’t been treated aggressively or thoroughly enough, and it’s causing his lungs, heart and other organs to worsen every day, he can’t freaking hardly walk and he’s confusing reality with several movies he’s watched in the last 24 hours. He hasn’t eaten in 3 days (currently refusing to touch his dinner in front of him) and is in a lot of pain. I got up and came back down here to see what’s what, and was told by the nurses don’t worry, he’s admitted.

So chipper white girl, put your nice where the sun don’t shine.

The only thing I wish is that I hadn’t gone to Mexico over Christmas. I could have better seen this all coming.
izzythepush
 
  0  
Reply Tue 15 Jan, 2019 01:24 am
@chai2,
Your nurse is probably all too used to telling people they don't qualify for Medicaid so this was good news. Having said that you don't need that bloody crap at a time like this.
farmerman
 
  1  
Reply Tue 15 Jan, 2019 04:50 am
@chai2,
tuning in and wishing I could help.
0 Replies
 
chai2
 
  1  
Reply Tue 15 Jan, 2019 07:21 am
@izzythepush,
izzythepush wrote:

Your nurse is probably all too used to telling people they don't qualify for Medicaid so this was good news. Having said that you don't need that bloody crap at a time like this.
.

Medicare and Medicaid are 2 entirely different things Izzy. In any event, this wasn’t a nurse, but what I found out was basically a clerk in registration.

Anyway, by that time we had already seen an excellent nurse practitioner who had taken over for the ER doctor that first saw him when he came in. Some critically injured/ill people had come in and the doc had to concentrate on them. This nurse practitioner and I really clicked. It was beautiful watching him ask questions of husband aimed at uncovering how much he could rely on the answers, having me there to confirm/deny or explain. I loved how he said to my husband something like “I apologize in advance for sometimes talking about you in the third person, like you’re not here, but your wife is the one with you all the time, and I’ve got to rely on her to provide what we need to best proceed with you.”

He was no nonsense, had drug in a portable charting unit so he could chart in real time what was being said. Also recording notes in a recorder for further charting later. Man he was thorough.

So he AND I jointly had developed a game plan for knocking out the pneumonia once and for all, and hopefully out patient physical and cardio therapy. If husband can manage to raise his dangerously low ejection fraction a bit, he will feel better and buy him time and quality of life.



izzythepush
 
  0  
Reply Tue 15 Jan, 2019 11:24 am
@chai2,
I'm not going to pretend to remotely understand your medical system. It's good that you're talking to someone you get on with who sounds like they know what they're doing. I just hope you didn't have to talk to too many idiots on the way.
chai2
 
  2  
Reply Tue 15 Jan, 2019 02:17 pm
@izzythepush,
I didn’t mean that in a negative way Izzy. It’s just that a lot of Americans can’t keep the difference straight.

Medicare is health insurance.

Medicaid is means based assistance for those with little income or assets
izzythepush
 
  0  
Reply Tue 15 Jan, 2019 03:04 pm
@chai2,
No offence taken. It's not something I have to worry about and for that I'm truly grateful.
0 Replies
 
chai2
 
  3  
Reply Sat 19 Jan, 2019 11:16 am
Updates FWIW.

Don't even want to reread what I've written, so may repeat some.

Home from 3rd hosptial visit. Lots of appointments and followups made. It's like a full time job keeping it straight.

In the past he would always refuse breathing treatments. But on the last hospital he stated it did help. So I asked primary for a nebulizer, but the pharmacy couldn't approve/get the right code for approval.
Yesterday we went to the pulmonologist. He took and exray in the office, and said that he could see no pneumonia at all. So there's that. He also perscribed the breathing treatments, and I dropped off the paper script at the pharmacy yesterday, and my first stop is picking it up. I'm sure it'll go through now.

Thursday, we went to get a PT eval. That was a bad day, but in a perverse way, a good way to get approved for PT. Sometimes his walking is like 90% fine. Then, all of a sudden, it's like he can't even stand. He pitches forward, get rise from chair, hard time even standing. We are trying to figure out at home what the common denominator is that preceeds this. So far ruled out hydration and nutrition, he's eating and drinking. Maybe fatigue, medication interactions, unknown.
When we got to the PT place he had a cane, but was unsteady getting out of car, and when trying to step up on curb, started to fall. I caught him, but they saw this from the inside of the PT place. Then walking down the sidewalk, he kept trying to aim his cane off the sidewalk, and I had to keep nudging/pushing him back near the wall of the building. The therapist was really great. She said she didn't want to proceed until we went to our appointment next Tuesday at the advanced heart failure clinic, so she could get the ok on how much he can tolerate. Yesterday and today his walking is great.
At the end of the month he sees his cardiologist.

If he can get his ejection fraction up even 10 points, he would be in a still abnormal, but functional range.

Last night, I just broke down. The straw that broke the camels back. One cat is getting older now. On Tuesday I had to take him in for tooth cleaning. Last night I saw he peed both in the kitchen, and dining room. I was like "great, one more thing." Bleaching the area, and checking the litter boxes, I just got overwhelmed. Shortly after that he got up and started eating a high calorie snack, and to watch some TV. I told him that for just one day, today, I needed to just be left alone, for nothing to go haywire with him, so I can get other stuff done.
It feels like a vacation.
0 Replies
 
chai2
 
  2  
Reply Fri 1 Mar, 2019 10:14 pm
Last 2 days have been rough. Took him to ER yesterday to rule out a stroke. Also no UTI or pneumonia, nothing on EKG.

He hadn't had one, thought maybe just dehydrated. Was better when he got home. All day today he mumbles, gets angry when you ask him to repeat, what he does say doesn't make sense. He's being very difficult. Wants nothing more than to argue, as that turns the conversation away from him. He's been drinking enough, and ate a good breakfast and dinner.

It used to be when I saw his car in the driveway when I got home I would get butterflys in my stomach. Now my gut grips wondering what I'm going to walk into.

I really don't like him much right now.
edgarblythe
 
  1  
Reply Fri 1 Mar, 2019 10:31 pm
I'm reading with a great deal of sympathy.
0 Replies
 
 

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