On death and dying

I didn't realize how ill your husband is.....my mother was diagnosed with Alzheimers when she was only 58 and she lived to be 72 (you could barely call it living) but the role of caregiver is exhausting. My Dad was in poor health but he managed a good deal of her care so I certainly wasn't shouldering the entire thing alone.

I remember times being so exhausted I could barely keep my eyes open. The hardest thing to remember is to take care of yourself, I wasn't good about following that advice but if you have a local department of aging they may help you get assistance from Medicare to hire some help. I know you don't need another organization to explain things to...if I could do that for you I would.

Lot of the folks here recognize the stress you are dealing with, I know I experienced a lot of numb periods and times when I wished I could go to sleep and not wake up. I'm not alone, other member have shared difficult times. There is nothing unusual or wrong about your feelings, if you need a good cry, do it...if you can spare 20 minutes for a nap..take the nap.....I'm sorry you and Wally are going thru all this...and it's OK , you don't have to like him very much right now....

Just reading, thinking of you, offering whispers to the universe.

People who tell you to let them know if you need anything.

99% of them are talking out their ass.

No, don't tell me that's not true, I've dealt with and asked for 20ish years, and it's the rare bird that will step up to the plate and do something that ******* helps.
If I ask for help, I'm at Def Con 2, minimum.

If you aren't willing to do whatever a person says they need, keep your mouth shut and don't offer.
No, don't think you were being nice. You weren't.

It just raises false hopes that you'll actually get some help in an obviously difficult situation.

Thanks for nothing.

I don't mind that so much, it's the ones who just eff off once they realise there's no hope. A couple of Sally's "friends" were like that, once she got her diagnosis we never heard from them again.

And some "help" you just don't want. After Sally died my father kept ringing me up, asking me how I was, and reminding me of what was going on. He once did it when I watching the Daredevil movie. I'd just managed to escape reality for a few minutes and then the ******* phone rang.

Oh I do. You say you're there to help, then don't, because "I don't feel comfortable with that"

This post might be long, or not, don't know. Not looking for thumbs up or downs or comments, ya'll are welcome to or not. Just me talking out my experiences and feelings, which apparantly are socially acceptable because so many members of society have little idea of what being sick or dying really looks like. We've gotten our cues from movies where people have the good graces to not look all that awful while being ill or dying. Where the person in question is simply weak and need an arm for assistance, not stumbling and flailing and trying to push away anyone trying to help and telling them to get the hell away, they're fine.

In America at least, you don't see truly sick or old people in public. They're all neatly tucked away so as not to offend. Sure, many of us have experience with someone like this, but seriously, someone who's really not doing well, but has the audacity to try to go out into public is looked at with widened shocked eyes. Since I've worked in nursing homes I know what these people look like, and that they are the same people inside. Used to be people died at home, and you had to deal with getting the body buried quickly because, well, it's summer.
Now we spend money we don't have to assuage some kind or guilt, or fulfill some societal expectation of putting makeup on a corpse and surrounding it with expensive flowers, telling ourselves that somehow it's for the dearly departed, and not so that you don't look cheap or unloving in front of other people.

It's all about appearances, and not reality.

So, for the next part of this saga.

I am so angry. Today, until recently, I was experiencing a delayed shock from yesterdays events. I'm coming out of it now though. I have a pretty quick turnaround time fortunately.

I think a couple of posts back I had said I took him back to the ER, and he seemed to pop back, so they let him go home.....that was....I think last Thursday? They had ruled out stroke, UTI, etc. Right. I just went back and looked.

So the next 2 days, Fri and Sat, he was back to being confused. I knew not to take him back to the ER, because it would just be deja vu all over again. I figured on going to the doctor with him Monday.

Sat was particularly bad for awhile, and is what prompted my comment above about 99% of people talk out their asses.

At one point Saturday, he comes out of the bedroom in his underwear, carrying a shirt. I'm doing something in the same room, and after awhile glace at him, and see that he's got one leg jammed into one of the shirt sleeves, and is trying mightily to put the other sleeve on his other leg. Long story, I eventually get him dressed in normal clothes, and did want to take him back to ER, as this was worse. He's refusing (of course) I know if I call the ambulance, and they show up and he doesn't want to go, they won't force him. I'm his healthcare POA but he hasn't been determined to be incompetent. All this is fairly recent remember.

So that's right out, and I desparately need help, and am not afraid to ask. That's when I went over to neighbors house. He's a good guy, I'm not mad at him. I blame myself for not realizing his narrow limits of what offers of "help" he has made in the past. He hangs out with husband a lot, and they consider each other to be "good friends" I go over, to ask him to (specifically) to help me talk him into going to ER, and as a side product, help me walk him to car.

When I walk in his house and start talking, I guess the release of being away from him hit me, and I started sobbing. I'm not breaking down, it was simply a physical release.

Oh, neighbors all present and ready with "Sit down and talk", but I'm all about "no, we have to get back there before something happens, I need you to help me talk him into going, because he won't"

I'm pissed because I didn't then realize all he was capable of (again, don't blame him, it is what it is), was letting the little lady cry and unburden himself, and he could be the hero that let her prattle on and say "there there"

**** that. I'm an Amazon Warrior.

His sole contribution at my house of "help" was "hey man, how ya doin' today?"

"Uh, you want to go to the ER? No? Uh, well, you sure"

"Uh, we all love you man, and just want to see you get better"

I'm like "WTF?" This is your help? Husband walks to do god knows what, and I'm saying to neighbor, "PLEASE, I need your help. I told you he doesn't want to go. I don't know what to do." I don't really know what I wanted him to do, but figured a fresh pair of eyes and different mind could maybe do something.

Now neighbor was all "well, I just don't feel comfortable. I can't tell a grown man to do something he doesn't want. I mean if he doesn't want to go there's nothing we can do."

I almost begged him, and suddenly it all came flooding back. Years back I actually had said to this same person, in a situation not even this bad "Please, I'm Begging you, I need help" and he said the same thing. "Uh, I'm not comfortable"

That's when, now he's standing on the porch, that I said, as I was turning around and semi slamming the door "Thanks for nothing" I would do it again in a heartbeat. Help is not cards, or (((you))) or "sending it out to the universe". It's getting in there and getting your hands dirty.

I had already texted step daughter, but she was out of town at a wedding. I looked to my other neighbors house, and both their cars were gone. I was thinking of texting shewolf, but she's an hour away. Any male friends of his would have (through experience) given the same answer as neighbor.

I'm just gonna say it. Men (in general) are just not that good at providing the hands on help that's needed in a physically and emotionally charged situation. Oh sure, they'll lend you their best tool, Or buy you a ticket to the superbowl. But, this real life ****. No.

Funny, later that night, when he went to bed (more on that in a minute) I called my friend he Mexico, and he said "You should have asked him if he wanted to go out for ice cream"

DAMN! That was it! Why did I not think of saying I felt like going with him to Denny's for pancakes. There's a pretty good chance that would have worked.

Ohhhhhh.....say some....but that would be lying to him.
Yep, and it may or may not have prevented what happened on Monday.

More on that in a moment. Need to take a break.

So that Saturday, he went to bed maybe 8 or 9, and slept like the dead for at least 12 hours or more.

I checked on him several times. Step daughter had said she was going to come over on Sunday at noon, and would bring him lunch.

Sunday he wakes up, and is 95% fine. I'm very cautiously kinda/sorta opimistic. Maybe he had been exhaused, and this prolonged sleep "reset" his brain. The day went well.

Monday morning, back to being confused. I called doctor, set up a 2pm appt. I had to do my 1.5 hour job, and hoped for the best. When I came home, he had both taps turned on in the tube, who knows how long, but he seemed ok.

At quarter to one, way early, but he was at that moment willing to go, and strike while the iron is hot, left for doctors office.

backstory. We actually would visit the PA Tracy in the past. She knows him well. She had recently left the practice due to budget cuts, but, with the practices ok, would let her patients know where her new job was. That Monday we learned was actually her first day somewhere, so not ready to see people. The actually doctor of the practice was not there, so we were going to see the nurse practioner, Jill, who we had never seen before.

The visit went badly. Very.

The bottom line was, I was definately getting from this Jill that she thought I was just trying to shirk off my responsibilties to my family. Through the entire visit she's giving me that screwed up eye look like there's "something fishy" with all this.

She gives him that stupid test that's been used for decades (same thing had already been given to him 10 minutes earlier by the tech, and even then I was like "are you kidding?"). You know the one. Who's the president? What season is this....Jesus wept.

I had the chain of events since the last ER visit all written down. I said he definately wasn't safe at home, that there was something else going on. He needed much more testing in a safe environment, that I wasn't able to adequate ensure his safety 24/7, and please could an admitting order be made so we wouldn't be sent home again from the ER.

Her response..."I just can't admit him to the hospital because you don't want him to go home with you."

Ohhhhhhhh ****. Bad move lady. But.....I kept it inside to see what else was gonna happen.

First she asks "Don't you have anyone who can help you? Friends? Family"

"Yeah. Relatives and friends who work full time, and could spare an hour here or there, and wouldn't be there in the middle of the night if he gets up and decides to turn the gas on the stove. He can't stay at home because I can't be next to him every minute I'm there."

There was more of the same from her, but she ended with "What is it you want? Do you just want to put him in a nursing home? You can do that anytime."



Me....No I Do NOT want to put him in a nursing home (he's sitting there all passive during this whole thing mind you). If I get to where I feel medical people have exhausted all the possible things of what could be wrong, and there's nothing else to do, I would move us both down to our home in Mexico. He could have round the clock care at his own home by trained people. I love my husband and I am NOT trying to get rid of him. I'm trying to get him somewhere safe.

Continued with.....And that little piece of paper with that dumb test to determine orientation? You could try to have a conversation with the man for 3 minutes and learn a lot more than from that thing.

I said more I can't remember.

Now she's all "I didn't mean it that way"
In any event, the doctor doesn't have admitting privileges to any hospital. You're going to find most GP or family doctors nowadays don't.

For a second I'm again why didn't I check this first, then pulled out my ace in a hole....

"Well call his cardiologist, when we saw he a week and a half ago he specifically said if he had to go to the ER again to make sure he goes to NAMC because he would then be in charge, and would make sure he wouldn't be sent home. Call Paolo, he know my husband well for 20 years."

She won't, but tells me to call, and take him to ER.

Great. Wasted trip.

Need another break.....

So.

We get up to leave. Husband doesn't want to be wheeled out in the WC that we got from the office to bring him in.
Jill asks him if he's ok walking, and he says "Of course"

I said, "yeah, watch this"

He was sort of ok walking to the door.

We step out, and there are 2 steps going down. Wide shallow steps that are not easy to see where the step down is.

I step down one, turn around and say "Watch it, there's a step here" with my arms up to assist if necessary.

He tosses his hand up and sarcastically says "ooooooo.....I'm falling"

Then he tells me to get out of his way so he can move.

I step a half step to the right, with my arms still up.

He goes to step down, and starts falling to the left.

I lurch foward to grab him, and miss him by less than the distance than the half step I took away from him. By a whisper.

He doesn't even put his hands out to break the fall.

He falls square on the right side of his head. I can still hear the sound.

For a second I can't decide to go to him, and when I realize he's lying still, I rush back inside yelling "HELP!" A woman in the waiting room had seen this through the window, and was already ahead of me, also yelling "HELP!"

When everyone rushes back out, he's trying to sit up. The next few seconds are a blur. They get him in my car, and obviously say "Go to emergency room"

Here comes the angry sobs again.

Looking at Jill, I yell at her.

"I TOLD YOU HE WASN'T SAFE! I TOLD YOU I COULDN'T BE THERE EVERY SECOND! I WAS RIGHT NEXT TO HIM AND HE FELL, AND IT'S MY FAULT! AT LEAST NOW HE'LL GET ADMITTED INTO THE HOSPITAL BECAUSE HE FELL RIGHT ON HIS HEAD AND HE'S BLEEDING ALL OVER!"

I get behind the wheel and rush off to NAMC, which is less than 4 miles away, muttering "******* ****" under my breath.

On the way up, he's saying just take him home, if I don't he's going to get out and call a cab, blah blah.

We pull into the hospital, and I pull into the half circle in front of the ER. I say, really calmly, on purpose not to aggitate him. "Please don't try to get out of the car. I'm going to get a wheelchair and take you in. Just....sit.....there...."

He promptly opens the door, and since he hadn't buckled his belt (no time), starts to try to get out. I grab his arm, telling him to stay, etc.

I notice he has braced one of his legs stiffly against the inside of the door, so he couldn't get out even if he wanted to.

The last thing I said to him was "What the **** are you doing?"

I look up, and realize he's having a grand mal seizure.

It's weird what you do at times like this.
I actually asked him "Are you having a seizure?"

I run in, and out comes the team with all the bells and whistles.

I'm following, and at the car, I look, and I think. "Well. He's dead"

They're doing they're thing and I ask "Is he breathing?"

Yes he is. He gets rushed in, I'm escorted in....again with the sobs.

They actually wanted me in the ER bay while they worked on him. Well, if I was willing. Sure.

At one point, right when 2 of the 6 in the bay walked out, and the other 4 had at least their heads turned away, I point and weirdly calmly say "Oh look, he's having another seizure"

Anyway, he gets ativan to stop seizures, and all the tests, xrays and so forth start.

He fractured all these bones around his eye. The checkbone, up by the brow, I don't know the names of everything. One of the things going on was determining if that kind of surgeon could come to NAMC, or if he would have to be transferred.

So the ER doctor asks me if he has a history of seizures. I'm calmed down now and say "No"

She asks, nothing like him just staring off into space?

**** my life.

"Oh Jesus. He's here because he has been confused mostly on, and off for days. I assumed when he would just stare he was zoning out. Could they have been small seizures?"

Doctor said don't know, that's why he needs to be here.

After seizures he was unconscious for, don't know, hours.

Admitted and put in epilepsy area. Head covered with a million wires for a 24 hour monitor.

He's there now. Went I went by today, he's confused, mad at me. I don't need to be there, so left.

Weirdly, last night in the ER, as hours went by, I asked several times if they needed any more info from me. It seemed they didn't, but they kept saying they did. I get that. At one point a nurse looked me and said "Are you saying you want to go home?" like how could I want that?

Yeah I want to go home. He's safe. He's where he needs to be. I can't do anything here. It's now 10pm. I haven't eaten in 18 hours. I'm exhaused.

Left after midnight.

So how was your Monday?

BTW, sorry for all the grammar and spelling mistakes. I'm not all there, and really don't care.

Your situation is stirring up painful memories of dreadful times trying to navigate the health care system for my parents and my mother-in-law. Is it possible Wally is having TIA's that resolve before they can have an MRI performed? My MIL had quite a few that would cause her to be terribly disoriented and sometimes it would only be for about 8 to 12 hours. However there was a cumulative effect and she never snapped entirely back. She also could be very passive, then turn very combative and obstinate.

I only mention this, because it took the docs a while to figure out what was happening...and also when my father had a stroke his speech was terribly slurred, but the ER docs didn't seem to notice until I asked them directly "has he had a stroke?" the Doc said "why do you think he had a stroke?" I replied "his speech is so slurred!!!!!....then the doc said 'you mean he doesn't normally talk like that???"....IT WAS INFURIATING......

I'm not trying to redirect your thread, I'm trying to say that some doctors will not notice you are bleeding from the ears even if you say 'my ear hurts'....I don't know if they are over tired, bored or incompetent. But it's what seems to happen over and over until you are so sick you pass out in front of them. (I don't think I'm helping you very much...I'll shut up for awhile).

He can't have an MRI because he has an implanted defibrillator, as well as other metals things in his body.

I learned this yesterday, but now there is actually an MRI machine or a way to perform an MRI on some people to have the defibrillator or metal.

Unfortunately, when they check out his specific model, it was not compatible.

So no to MRI's.

Oh yes, and I do get it how some healthcare professionals DO need to have what seems obvious pointed out to them.

I have every respect for medical professionals, but the patient, and by extension I, are part of the team.

There's that old joke of "What do you call the person who graduated in last place from their medical school?"

...
...
...
Answer: Doctor.


I did, and do call attention to things like slurred speech, since they aren't familiar with his voice.

He has a heavy Texas drawl, and I'm there to say "This is not his normal speech"

Thanks though for those ideas.
Yes actually, that could be very helpful.
Those are concrete ideas to keep in mind.

I mean, until the ER doctor said that about "staring into space", I hadn't thought of TIA's.

Could very well be.

So far, I have not heard from the hospital neurologist. I hope to hear from her tomorrow.
Also the surgeon...

Thank God for cell phones is all I have to say.

I didn't see your last post until I posted mine.......I didn't even think about seizures!!!! Towards the end of my mothers life, she began having seizures (due to the advanced Alzheimers). Initially the episodes were barely noticeable, but as they progressed her body would stiffen, there was some trembling and when it passed she was completely wiped out. She was no longer verbal, so anything she said was already gibberish (I hate using that term) you wouldn't have seen mental confusion because she already was incredibly confused. Alzheimers doesn't follow the same path in every patient, in my mothers case, she forgot how to recognize paper money, and lost verbal skill quickly. Sometimes she would shake her head as if she was making a serious observation, and just say 'blue shoes, blue shoes, blue shoes' then smile.

Your post reminds me of the trouble we had getting Sally dressed to go to hospital.. It took about an hour, me and the Kid working shifts to try and dress her. She kept changing her mind about what she wanted to wear half way through. It's so hard not to lose your temper.

I want to apologize to Sturgis.

I realize just now that he had written something about whispering to the universe. Sturgis, I fully appreciate your intentions, and as we don't know each other personally, and that you won't ever be physically present with me, I know that was what you could best offer.

Thank you Sturgis.

#######

In my post I was meaning the type of person that you really could use some help from, and you're sitting there wondering what in the world you're supposed to do with that sentiment.

You're thinking about me? Just say those words. Don't make someone have to work at interpreting, maybe wondering what the universe is somehow going to "do", when you maybe just realized you have no clean underwear.

No apology necessary. I understood what you were getting at.

As to other matters...

you summed up perfectly the uselessness of people who say they'll be there to help. They utter the words but when push comes to shove, they "can't" . What? They can't even move thirty feet to give an assist? Jesus, Mary and Joseph, this is nuts! Run into a few of them myself. After that I always keep them at arm's length.

I'm glad I started this thread if only it gives me the means to look back and see the date when things happened.

I have a bad concept of time. Always have.

The fall/seizure thing for almost 4 months ago.

I can say that since then he has been taking his meds properly, and only what he was supposed to take.

But, in the last month or so, he was always tired. Would spend most of the day and night in bed. No energy. But his mental status was good, and he was steady on his feet. Around the house didn't even need a cane, he would take it with him "in case" when he went out.

Then, last Saturday he would get all shakey. On Sunday he went out to lunch with his daughter, and she noticed it too, but that he had a great appetite, and was mentally fine.

Then Monday morning at 8am I heard a thump. Went to the living room and he was sitting on the carpet. He said he lost his balance, hit his back against this large wooden piece of furniture, and basically, did that sitting down on your butt type of fall.

We went to the doctor who could get us in at 12:30 (Thank God we had managaed to reconnect with his regular PA sometime during the last 4 months) His oxygen levels were low, and she was concerned enough to tell me to take him to the ER. By that time his back was in agony.

Long story, but they admitted him because his o2 was low, like 86 He had pneumonia, again. And he had broken 3 ribs falling against the furniture. It really doesn't seem like he was in the hosptial all that long, but well it was the whole week. He was discharged this afternoon and we got home around 6:30pm.They sent him home with a tank of o2, and as I was driving him home I called the O2 guy per his directions, so he could come deliver the at home o2 machine.

O2 guy came by, set up the machine, and now husband is sleeping. The ribs aren't as painful, but they will be for awhile.

It would be nice to think he won't have to be on O2 forever, and this is shortish term. But who knows.

This makes me very sad.

maybe with the O2 things can change. If he starts to regain some of his strength and duration , maybe look into one of those battery operated O2 concentrators. My last aunt is 93 and uses one and she went to the movies and takes daily walks and even does a bit of gardening. The O2 was a big difference maker.

Yeah, we don't know if the O2 is long or short term. We'll be going to his PA during the upcoming week.

That's a good idea about a battery operated concentrator to keep in mind down the road farmer

Right now, he came home with one tank, which he didn't use for the 15 minute drive home. really too much of a hassle and he was fine. Then, when the o2 guy delivered the home O2 concentrator, he left, a couple more tanks and a coule really small ones.
The regular size tank can last 8 hours, the small ones I think an hour or hour and a half.

Yikes just looked at the price, at least a couple thousand. Well that's good info, if we need/want it down the line.

Right now, no ****, that rib area, although getting better it seems, was the real bitch.

That's all for now, thanks farmer.

I always hesitate to open this topic, fearing the worst. I'm glad today at least things are stable-ish. The new stable, I suppose.

I re-read this topic today. Thank you for a peek behind the curtain. There's a lot of hard stuff behind it, and you approach it with grace, dignity, and let's just get 'er done.

yeh, me too.