The decline of my father in law
 

Whee! What a fun thread title.

He wears a back brace for a spine fracture, and it had been working beautifully for a few years, but he began experiencing new back pains late last week.

On Sunday morning, we got a call from the assisted living place that they had called for an ambulance to take him to the ER because he was having trouble breathing.

We got ready to head off and drove across town an arrived at the ER about 45 minutes after the call. And the ambulance wasn't there yet. But it showed up about 10 minutes later, and we had to wait for another hour in the waiting room until they called us to come back there.

So once we got back there and saw him and talked to the nurses and doctor, it became apparent that they suspected pneumonia. He looked like crap. Trouble breathing and his skin was pale gray. But they had an oxygen tube in his nose, and he improved in color steadily the entire time we were there. The ER folks were really nice, and one of the nurses actually knew him because she's also a chaplain at his assisted living facility, so that was really nice because she spent extra time talking with us. Nice people.

Monday was frustrating because my wife, who has power of atty, couldn't get there until after she was off work, and there was nobody to talk to about him. But a nurse gave her a copy of the write up of his xrays and CAT scan. It was written in medical language, but with wikipedia, I was able to read it. Boy, was that a mistake. He had so many things wrong with him, the pneumonia seemed like the least of his troubles.

We knew he had a broken back. That's why he was in assisted living. But with a brace, he was pain free and able to walk for the last two years. Until last week. That's when he got a new break in his spine in an area not supported by his brace. His bones are old and very brittle. And this new break is causing intermittent excruciating pain. At one point he asked me to adjust his watch for him, and he raised him arm, and his eyes about popped out of his head in pain because just that slight arm movement wrenched his back.

And then there was the difficulty breathing. We thought it was pneumonia. But as I read the report, it turns out he has a "large" hernia in his diaphragm. So big, that part of his stomach and colon are up inside the hernia. But no sign of food blockage, so that's good. The nurse had told my wife that they wouldn't operate to fix the hernia. So I had images of his diaphragm being basically torn in half and this difficulty breathing being the new normal for the rest of his life.

The report said he also had some fluid around one small area of one lung, and some irritation in that area, so there really was some pneumonia. It was good they were treating that.

And of course, as an old man, he has a slightly enlarged heart, and there's calcification around there.

And he's got cysts on his pancreas.

So this report had me convinced that he would be dead in no time. The shredded diaphragm sounded horrible.

But then Tuesday, my wife called in sick, and spent the day at the hospital, talking to everyone. Turns out the diaphragm is just fine. His only real problems are the broken back, and the pneumonia. And the pneumonia is getting better. His doctor said the prognosis is "good." His doctor thinks he's a candidate for back surgery because he's been fairly active for the last two years, but the ortho surgeon thinks his bones may be too brittle and back surgery is too aggressive. This is the same day that the Washington Post came out with an article about how a recent medical review says 90% of back surgeries are not necessary. Is he gun shy because of the article? He wants to use a larger back brace that will support the new fracture. A more conservative approach. But let's do an MRI to see things better.

So Wednesday, my wife works. And goes there in the evening. They had ordered an MRI to really look at the back. FIL is unable to lie flat on his back. It causes immense pain. So they give him strong pain meds my wife remembers from watching Drugstore Cowboy. They try to lie him down and he is in extreme pain. The MRI is called off. He's in horrible shape. My wife comes home all bummed out having seen him suffer so much. She say out loud that she wants him to just die now. It's no kind of life. It's unbearable to watch him labor for breath, cough, wrench his back and then gasp in pain while his eyes pop out, and his face flushes red. And then he slowly, tentatively starts breathing again, only to be followed by another cough a few minutes later.

She is scheduled to be off today. She went to the hospital and I just got a call from her. He's going to get a surgery for his back to take the pressure off his spinal cord. In fact, the first she heard of this was when the anesthesiologist comes into the room and see her feeding him a milkshake. (That's another thing, he can't feed himself because raising his arms is too painful in his back.) Nobody knew the surgery was going to happen, so he ate breakfast and lunch. It's postponed until tonight. The surgery is deemed necessary because they are afraid of bladder and kidney damage if they don't do it.

I hope he either gets his back fixed, or dies on the operating room table.

It's amazing how fast this all happened. Just last week everything was fine. Now I'm wishing him death.

77 years old. He's had a full life. Let him go in peace with a little dignity.

These are all my thoughts. He hasn't asked to die. But he's got a DNR. Hmm. Maybe I should check on that. He had a DNR at the assisted living facility. I don't know if the hospital knows about the DNR.

Shit.
My sympathy to you and Mrs. Glatt. 77 seems young to me, but what do I know? It is hard to watch someone decline and be unable to do anything about it and also knowing that the getting better isn't really being better, just continuing being a little longer.

My SIL, who is a nurse, said pneumonia is called "the old man's friend" in that it helps them die.

Maybe the kind thing to do is not to treat the pneumonia.

Thanks. It sucks.

Life goes on for us. We're super busy The kids have so much stuff scheduled. But there's this cloud over everything.

Sorry to see this Glatt. It must be tough on you and the missus. X

Sent by thought transference

Sorry. :( I remember reading an article once about how most doctors refuse the end-of-life medical care that is considered standard for old people. Having seen what they've seen, they choose to minimize suffering and go (what turns out to be only slightly) earlier.

Wow. Sorry man

That's really horrible Glatt. Why didn't the pain meds work? Cant they give him something to relieve him of all that pain? After the surgery, really push better pain meds.

I'm so sorry for him and your family. I hope his surgery brings him some relief from the pain

Damn what a Bummer !!!
And Mrs Glatt cant get off work to help her Dad ???? Is that leagle ???
I thought there was a Family leave act passed a few years ago , Dadz be family so whats the deal ???????

Stay strong !!!!

Well, today was good. Wife's brother showed up, from NJ, so he can help. And he's staying with a cousin so we don't even need to host him.

Surgeon wanted to try an MRI again before doing surgery, but the technicians refused because it went so poorly last time. So no surgery today or MRI, but he's been all drugged up, so feeling no pain and sleeping.

That meant we could focus on Halloween and hang out with friends tonight. A good night.

Sorry you have to go through this, Glatt. I hope things improve for your FIL.

Sorry man, stay strong.

Oh, glatt, I'm so sorry to hear this. It's so hard to watch a loved one in pain. I'm glad the meds they're using now are helping.

The $64,000 question is whether surgery will stabilize the new fracture enough to give your fil pain relief and restore a decent quality of life for him. It sounds like his MRI shows major pressure on his spinal cord, and that's not a good thing.

Pneumonia is indeed the old man's friend. Sometimes it's the kindest route, and sometimes not. It depends on the realistic prospects of relief from surgery.

Please feel free to pm me anytime. I'll be online here and there over the next few days; I'm traveling, but will check in. Best wishes for all concerned.

Thanks, ortho.

FMLA can be very useful, but there are two major caveats for the employee. First, you are not paid while you are gone, you are simply guaranteed to be allowed to come back when you are done caring for your relative. Second, you are not guaranteed to be given your same job when you come back. I think it has to be at comparable pay, but they can put you in a different department or position at their discretion.

Yeah, and she's "only" a part time substitute teacher, so she's able to take time off if she needs to. It's only her feelings of dedication to the job and not letting them down when she's agreed to cover for specific teachers that made her want to work those days. She was supposed to work today, but got out of it. So she actually has a lot of flexibility. She has a regular schedule in one school, so they really give her a lot of responsibility and depend on her.

It's something you hear and probably don't believe when you are younger, If you have your health you have everything' sorry to hear about your FIL Glatt the pain he and your family feel must be unbearable :(

His DNR - and Living Will and durable Power of Attorney, if he has them -
should have gone in the ambulance and/or already been on file at the hospital.

But if your wife did not already know of them, it shows the reason
prior discussions with (all) the family are so important.

glatt, mrs glatt... I find your situation upsetting, but tha's my problem.

I'm very sorry to hear of your fil's suffering, it seems so hopeless and confusing and scary and painful. Well, more of my own projecting. I'm done with that now.

I wish your fil a speedy recovery, relief from his pain, and comfort and love from everyone around him. I wish for strength for you and mrs glatt and all your fil's family. I wish for clarity and persistence and compassion for his doctors and caregivers.

hugs to you and your family glatt.

Sorry to hear about it Glatt, I've been there and done the tour. Maybe there was a good reason that humans used to not live as long in past ages.

I left work early today to come be with my wife at the hospital to help with decisions. They were able to sedate him enough to do the MRI. The surgeon looked at the MRI and called us and emphasized that the surgery was extremely risky. He's supposed to talk to us face to face, but we've been waiting for a few hours. He must be in another surgery. He's clearly trying to steer us away from surgery and toward a brace. So we're just waiting, and they won't let us see FIL.

That's the name of the game. Waiting.

I'm getting a kick out of watching the janitor use this cool machine that mops and dries the floor all at once. He's putting out these caution signs, but the floors don't even get wet.

If the surgeon is steering your fil away from surgery, I would give his opinion a lot of weight. Sometimes a good outcome is just too unlikely; other times the concern is focused on existing medical conditions that make surgery a very risky proposition. It's possible to assess a person and predict fairly accurately that he/she won't tolerate anesthesia and will be unable to come off the ventilator. In your fil's case, the surgeon appears to be basing his advice on what the MRI shows.

If a brace plus pain meds will make life bearable (if not completely comfortable), it's worth careful consideration. Surgery is painful, rehab is prolonged, and results (with spines) are not guaranteed. That said, it's horrible to watch someone you love in pain. My sympathy and best wishes to all involved.

We had a face to face with the surgeon, looking at the MRI. It was a good 15 minute conversation. Lots of pros and cons either way. Both paths are risky.

But we're going with the brace. It's a custom job and will take a week or so to be made. Meanwhile he has to stay flat on his back, even though that's more painful, to immobilize one fracture so it won't get worse.

I'm glad there's a plan in place now, so there's some goal to focus on.

I'm glad you and mrs glatt had the chance to discuss pros and cons with the surgeon. With a plan you can look toward short- and long-term goals, as you say. Best wishes to you and your family.

Just catching up with this thread:

My sympathies to your FiL and of course you and Mrs griff. Awful to watch a loved one in pain. Amazing how something like that can basically take over the whole family for a while.

Glad you guys got to do some Halloween hanging out. And good luck with the brace plan. Hopefully your FiL will get some decent and relatively pain-free quality of life back.

So the update here is that my FiL was promised a discharge from the hospital last Monday, but his blood work wasn't where they wanted it to be. So every day they kept poking him with needles and every other day or so they would do an excruciating CAT scan to see if the diuretics were getting rid of the fluid on his lungs, and things kept improving slowly, but we were not there yet. His spirits kept getting worse by the day when they would say "maybe tomorrow" and then no dice. So finally on Thursday, my wife told the doctor that the discharge had to happen that day because we were close enough and staying in the hospital was torture. And the doctor went along with it. It was a 2.7 week hospital stay.

He's been in a rehab place since Thursday night, with a large back brace he has to wear whenever he gets out of bed. They make him exercise 5 days a week, and I think he stays in bed with the brace off on those other two days. The rehab place is good enough, and he has a private room with a window view of some shrubs and trees that are changing color. Nobody is sticking him with needles or prodding him or making him have CAT scans. It's much more comfortable and quieter. The staff appear to treat the patients well.

When we time our visits to coincide with the pain drugs wearing off, he is 100% there mentally. But if we show up when the pills have kicked in, he's all mumbles and full of negativity. So now we try to time the visits well.

Hopefully he will get strong enough to go back to his assisted living facility. We've got some cautious optimism now, and at least he's out of the hospital. They took care of him there, but every day was an ordeal.

Sounds like a good change for him anyway. Good luck man.

Glad to hear that your fil is in rehab now, glatt. It should be a more positive environment, and he should get more sleep. Nobody can sleep properly in a hospital. I hope he'll regain enough strength and mobility to be able to return to his assisted living residence. Best wishes going forward.

So thankful today. Just visited him and he's doing extremely well.

He mentioned that he hasn't needed any pain meds, not even a Tylenol, in a few days. And the last two visits, he's been sitting in a wheelchair when we got there, instead of in bed. And today, he had a little riding up going on down there, so he simply STOOD UP and adjusted his package in front of us. A little awkward to watch, but he stood up without asking for help and did it fairly easily. He's got to wear a big brace, but other than that seems perfectly normal now. It's simply unbelievable how much he has improved.

Nice to hear some good news . Hoping things continue to improve .

FIL is still making progress in the rehab place, and they are talking about moving him back home to his apartment in the assisted living place. Could be in a couple days or maybe a week or two. So that's fantastic. He's mentally in a great place and with his back brace on, he's able to do much of what he used to.

But anyway, the bills are rolling in now, and I have to say that Medicare is teh awesome! He spent several weeks in the hospital, some of it in intensive care, and the bills that are coming in are only like $34 here, $15 there, and so on.

It's no wonder that Medicare is costing the US taxpayers so much money and the Tea Baggers want to slash and burn it. Based on my FIL's experience, it's a huge financial benefit to the people who use it.

I hope it's there for me when I'm a feeble old man with a broken back.

It should be there for all of us when we become feeble with whatever misery fastens itself upon us. We may hope to die suddenly while in otherwise good health, but we don't always have that choice.

I suspect that a cultural sea-change will be needed if the country is to cope with the approaching demise of the Boomer generation.

He's back home in his apartment at the assisted living place. It's amazing how much he has improved since the low point where I thought he was a goner. He'll still need a big back brace, and needs someone to put it on him before he can get out of bed, but he's pretty much back to his level of self sufficiency once it's on. It's hard to believe it's only been two months since he was first hospitalized. Feels like much longer than that.

That's excellent news.

Well, here it is, six months later. It's been a good six months, but we just got a call that they are taking him back to the hospital with trouble breathing. Pneumonia again. He called my wife himself a short while later, acting all upbeat, saying not to bother visiting him in the hospital for a few days. He's a big faker some times. It's a good sign though, that he has the breath and energy to give us his "it's only a flesh wound" spiel.

We'll see...

Hospitals visits are never good. Bad things happen there.

:fingerx:

I think he'll be ok. He needs to be there. Possible leg infection, but I've seen him look far worse. Nurses are all nice. And so was the ER doc.

It's good he's there with that infection, sepsis is a big problem because it works so fast.

I hope he pulls though ok again glatt. Missed this thread the first time round. Sorry bout that. With any luck and no other complications, he'll be fine. :)

hopes and prayers sent

It's better this time around because he's not in any pain.

But his breathing isn't very strong. They moved him to the intensive care unit. At night, they put an ipap breathing mask on him, and he doesn't like that but he is refreshed in the morning and animated and talkative. They let him breathe on his own during the day, and as the day wears on, he gets drowsier and drowsier as the carbon dioxide builds up in his blood.

We tried to have a conversation with him about getting a do not intubate or resuscitate document together and he was expressing his wishes, but not precisely enough that we could get the paperwork done. Maybe today.

He's 100% there mentally but his body is quitting on him. We haven't had any official conversations with anyone yet, but my perception is that when he gets out of the ICU, he will be going into the hospice wing of his assisted living place, where they will put a mask on him. I don't see him improving from here. But who knows? I'm not a Dr.

It's so much better this time without all that pain. I'm so thankful for that.

I wonder if the phone call to your wife, the night before he went in, was not so much to put her mind at ease, as to convince himself that this too shall pass?

The timing of this is really beginning to suck. On Thursday, we're supposed to hop on a plane to California for a family reunion vacation that's been planned for almost 2 years. My parent's 50th wedding anniversary. 17 people adjusted their schedules to be there. All are my immediate family. We want to go.

But FIL is still in the hospital ICU. My wife is his only family able to be there for him. They fixed his breathing problem a while ago by draining a liter! of fluid out of each lung, and we thought he would be discharged a week or two ago. But they can't get him stable. They have to keep adjusting his various meds up and down to try to get his BP, blood thickness, and pulse in the right zone.

On Saturday they decided he needs a pacemaker because his heart keeps stopping for a couple seconds at a time. He's a borderline case for a pacemaker. So they need to ease off on the blood thinners so he can have the surgery in a few days. Right about the same time we're supposed to fly off to California.

So my wife, who has been carrying all this stress of dealing with this stuff and needs a vacation, is probably going to not come on the vacation. The big family picture she coordinated with a pro photographer in Yosemite is going to have everyone in it but her. She's going to be all alone back home, making trips to the hospital and then coming back home to an empty house while we're off having fun in Yosemite. Except I won't be having fun. I want her there with me. If she's home dealing with this stuff, I want to be home supporting her. The kids want their mom with them. I basically have to go, and I want to go, but everything we do, I'll be wishing she was there too, and it will hold me back from enjoying it.

I'm not even sure FIL should get a pacemaker. If his various systems are as screwed up as they are, is is such a wise idea to make his heart keep beating perfectly? The pacemaker will not even improve his quality of life, other than keeping him from momentarily passing out when his heart stops for a couple seconds. He'd bedridden right now, so who cares if he passes out for a second or two? It's only if he improves and gets out of bed that it would matter. Not my decision though.

I'm grateful that he's comfortable, and alert, and in decent spirits for someone who's been lying in an ICU bed for 3 weeks. But he's forgetful. I think he doesn't even remember that we have a vacation planned, and at this point I think we're not going to remind him. No need to make him feel guilty for keeping his daughter from her trip.

This sucks. I know others have dealt with worse, and I don't know how they manage.

That sucks. Sorry, glatt. Is it the kind of thing where he might conceivably die during the timeframe in question, or is it just one of those "I should be there when he wakes up from surgery" kind of things?

It's more the "I should be there." I don't think he's dying soon.

The hospital equals uncertainty because he could be discharged any day or they could come up with other procedures they want to do. She needs to be around to help take care of logistics and help with decisions if any of that stuff happens. He's alert, but needs things explained to him. Plus, he can understand us better. English is a second language for most of the folks at the hospital.

If he can get back to the nursing home, that means he's stable. He would feel comfortable there, and so she would be fine leaving for a while.

She just can't leave when things are uncertain and she may be needed to help.

Bleh. Sorry, man.

I'm sorry, glatt. That really sucks.

Oh I'm so sorry, Glatt.

I'm sorry, glatt.

Damn, Glatt. That's a really tough situation.

If you ask very nicely, maybe the photog could take a version of said photo so lovely wife could be 'shopped in at a later date?

Oh, crap, glatt.

But may I say (and it's no consolation) what a wonderful family you have? Your wife seems to be a really good person and you are a husband who wants her around.

I'm so sorry she won't get to go. :(

The decline of my father in law
 

That sounds so hard to deal with, Glatt. My thoughts are with you and your family.


Sent by thought transference

Sorry man. Does anyone else involved think the surgery is appropriate?

I was going to suggest exactly what grav said. Could your wife even maybe come for a couple of days? Its a terrible situation. I wish there were an easy solution. Xx

Your situation is what private duty agency nurses are for if you can swing it. You can specify an 8 hour shift and on call for emergencies; also, male or female, native English speaker, private transportation, PC literate with own laptop/notebook and Skype. Give the nurse FIL's advanced directives, your contact numbers while away, and any special instructions you want followed. Arrange access to FIL's stuff at the nursing home in case something there is wanted. Meet the nurse at the hospital to communicate your instructions, do a video call check, and introduce the nurse to FIL then it's bon voyage for the glatt family going on vacation/respite. You'll be able to have virtual face to face communication with FIL and hospital staff via the PC equipped private duty nurse. You haven't got much time to make the arrangements; but, either the nursing home or the hospital can help link you up with a reputable nursing temp agency. Good luck with whatever you do.

Thanks everyone! We're going to take it a day at a time and keep all options open. Including possibly changing the tickets so she can join us a few days later if possible. FIL asked her today about the vacation, so he remembered after all. And when she said wasn't going, he was incredibly grateful and apologized for ruining things for her. So she feels a lot better about it now. We'll still miss each other if she can't come, but there won't be any resentment about the situation.

Of all the possible outcomes to this unhappy situation, that seems like the least bad one. Good luck to your FIL and your wife and bon voyage to you and the rest of your family. You're in for a treat out West.

Yech, what a horrible situation. At least, as you say there's not that underlying resentment now, adding to the mix. Hope it all works out and you both manage to make it to the party. And hope your FiL is feeling better soon. He's clearly been through the mill a bit this past year.

I stopped updating this thread when we went off on vacation and left the Mrs at home with her dad. That was a bummer that she didn't get to come, but he got the pacemaker like a day after we left, and was discharged from the hospital in mid-July. He went into a rehab facility until yesterday, 9/11. So that was 2 months in rehab.

The rehab was really good for him. Got him to a point where he was better than when he went to the hospital 3 month ago. Plus, now he has a pacemaker.

The bad thing is that he's not independent enough anymore to go back to his independent living apartment, and has to go into the nursing home wing of this place. It's really nice, but the other residents are mostly not there in the head any more, so he doesn't have anyone to talk to. We're hoping this nursing home is a temporary stop, and that he can go back in his apartment, but I suspect in a month we will be giving up the apartment to save money and emptying it out.

This nursing home is really expensive, and he can only afford it for about 2-3 years. He could afford the apartment pretty much indefinitely.

So it's a mixture of good and bad news. He's way way better than when he was in the ICU on a ventilator in June. But we're disappointed that he's not going back to the apartment. It's like he's too tired to try anymore to get stronger and independent.

I hope when I get that old, I'm just hit by a meteorite or something right before I'm scheduled to go into a nursing home.

Does the nursing home offer occupational therapy?