Posted by Laika57 on Dec 25, 2019 7:02 pm
about October my husband began having stomach pains, went to the doctor. Got prescribed antibiotics for a UTI. When it didn't get better, he was told to give it another week. When he went to see another doctor, because it was getting worse, it was diagnosed as probably gallstones, or an infection caused by the first course of antibiotics...
waiting for tests, he was prescribed some pain meds... no real results from an ultrasound. A week later he was beginning to turn yellow. Went to hospital where they put a stent in his gall duct because there was a mass compressing it.
still took a week to be diagnosed with pancreatic cancer. Another week to see a specialist. More tests. Next appointment is January 2nd. We're supposed to learn if he will get chemo before the surgery (note the CT to check whether there's any metastases in the lungs, isn't until Jan 9th). Meanwhile, yet another hospital doctor has upped his pain meds to morphine.
this is where the problems started for real. The morphine has him out of it most of the day. At first, he took twice as much as recommended ("but the doctor said to take two") and mixed it with zopiclone (sleeping pill) and alcohol to boot. he was so weak that day he kept dropping on the spot. He says he didn't hit his head, but I am still concerned about that.. he Couldn't even turn over in bed.
I took charge of his meds at that point. Seems the slow release morphine does enough to keep the pain at bay, but the side effects are stacking up and have me worried.
he is sleepy most of the time, and confused a lot of what's left of the day.
he argues about checking his sugar and giving him meds and insulin.
getting him to eat is a job and a half.
is what I am seeing the morphine, or the cancer? How do I deal with this?
Will his "sanity" for lack of a better word, come back as he gets used to the drugs? What if it doesn't?
He's not eating much, so I feel I have to make extra sure he gets his enzymes and insulin, so what energy goes in, doesn't just get flushed out again, right?
just pretty overwhelmed right now. I want to help, and I want to yell at him when he is arguing about my helping him with things, and I burst into tears when I see him trying to open a pop bottle with the meat thermometer....
Posted by Wendy Tea on Dec 25, 2019 7:11 pm
Please keep monitoring your husband's medicine and try to get him to eat.
Posted by Laika57 on Dec 25, 2019 9:23 pm
Both our families are in Europe, and he hasn't spoken to his in some 30 years. I doubt I can expect help from that end. I wouldn't even know how to contact them. And if I tell my folks, they'll just ask if I've come to my senses and am finally returning home...
It's like I've turned from partner into housekeeper, nurse, chef and person to take frustrations out on. I make him lunch, he eats half, naps and then complains about the food being the same as yesterday (though it's only 20 minutes later. )
I just cannot find it in me to cook five different meals a day. And when I do cook, he doesn't eat, says something is wrong with it, or whatever. I don't feel like eating anything either. But there I try finding easy calories for him to consume. (Peanuts, biscuits, hot dogs, fruit...) i make him two hot meals a day and it's not enough. Or not right anyhow.
I've told him he shouldn't be drinking, and there he goes opening beer #4 of the day instead of eating a soup I made yesterday or suggesting something else to have for dinner.
at least in his state he won't be able to go out and buy more alcohol when he is done with this one. (He certainly won't be finding his bank card until he is lucid. I'll make sure of that.)
Is it wrong to want to slap some sense into him? I won't. But I so want to....
Posted by Brighty on Dec 25, 2019 10:25 pm
Posted by Kims1961 on Dec 26, 2019 12:39 am
Brighty gave some great suggestions. I might encourage you to speak to your family doctor - for you. Are there any other supports in the community that might help? Do you have a Meals on Wheels program so you can get a break from cooking sometimes? In regards to his pain - there may also be some concern for mixing the pain meds with alcohol - if it means he gets some rest by passing out for a while - it may also give you a chance to have some "time away". Do you have supports? friends that you can talk to or have over?
It might be worth jotting down some of your concerns, so you can give his medical team a good sense of what is going on. My father in law, who gets UTI's gets very confused, agitated on top of some of the side effects he may be having from the meds.
Please keep us posted on how you're doing. Your appt. on Jan. 2 should hopefully bring some clarity and some strategies to help your husband.
Take good care, Kim
Posted by Kuching on Dec 26, 2019 7:46 am
First of all, he should NOT drink alcohol with slow release morphine. It can cause the pill to release much faster, and give him an overdose. It should say that somewhere in the instructions you got with the pills. Just give all the booze to the neighbours. And hide the car keys while you’re at it.
Second, I would say the chances are that his mood and mental problems are caused by the morphine (my husband was hallucinating when he was on it, plus major confusion over can openers etc., as you mentioned). I would guess that the loss of appetite is caused by the cancer (my husband lost 70 lbs in 6 months, and is now wearing my clothes). Try and get him to drink Boost or Ensure, so that at least he gets the vitamins etc. that he needs. I made it a rule that my husband has to take all his pills with Boost. Also, talk to the doctor about giving him pancreatic enzyme pills with his meals, he may be having problems digesting his food.
Third, GET PROFESSIONAL HELP. I ended up having a meltdown in the doctor’s office, said I couldn’t handle it any more, they admitted him to the hospital while they got his pain meds sorted out. Turned out morphine just didn’t work for him, he is now on oxycodone, in much less pain, eating better, sleeping better, and mentally much better too. It sounds like you are not eating properly yourself, and I’m sure you’re not getting enough sleep. You won’t do your husband any good if you wear yourself out trying to look after him. Tell the doctor that he is not safe at home, that usually gets their attention.
Please note that all this is just my own opinion, and not any kind of professional advice. But please do get help, whatever it takes, for both your sakes. My heart goes out to you.
Posted by Cynthia Mac on Dec 26, 2019 8:25 am
It also sounds as though you live with a man who is a diabetic who has no interest in taking the required care of himself (“beer #4” tells me that).
You’ve got great advice so far, and I would like to add that when you are cooking, freeze some small portions of the food so you can just reheat it later. The Meals on Wheels suggestion reminded me that your local hospital might also be a place where you can buy nutritionally balanced meals you can keep in the freezer, too.
When they put the stent in for his gall bladder, did they recommend a gall bladder diet? I have an aunt who is having gall bladder issues right now, and we’re beginning to suspect my Dad could be having that, too (he’s her sister, and his symptoms reduce when he eats those foods). So, you may wish to look up gall bladder diet - I don’t know much about it, other than no fatty foods - deep fried foods, dairy, including butter or cheese, bacon, etc., and no food with seeds (green beans, zucchini, strawberries, raspberries, blueberries, etc.).
Please try to keep yourself and your “patient” safe - that means creating a safe environment - hiding the car keys was a great idea, as is removing any remaining alcohol - and making sure you have help at the ready, even if that is the paramedics at 9-1-1.
Thank you for reaching out. We are concerned for your safety.
Posted by Laika57 on Dec 26, 2019 8:30 pm
(I'll figure out how to tag individuals soon enough ;) )
The problem my family has with him is age (and geography, i presume). He was almost twice my age when we met. (Playing chess, online, I jokingly invited him over for dinner, and he bought a plane ticket...) never knew his age til we met, and it never bothered me. But my family is hung up on perceptions. You know, get married to a high school sweetheart and have 2.3 children... now they'll probably feel they were right all along.
as for the 4th beer. Turns out he poured them, and left them standing all around the house. (Any suggestions for beer batter recipes?) He probably drank about the equivalent of one can. So it's not as bad as I first thought, though I will try and remove temptation where i can.
He does get the enzymes. I make sure of that, and I'm also watching his insulin now. No point flushing through what food I can get into him. I've actually bought a protein powder, and suggested the boost, but he feels that using too much of "that crap" is what got him sick to begin with. So he refuses to touch it.
Personally, I've dusted off my weight set and am planning on getting back into lifting, to be better able to help, and feel better at the same time. May as well make use of that protein powder, eh.
with the holidays over, we've begun telling people. That also takes a load off.
I will look into getting his pain meds changed. Debating if we should do that before the January 2nd doctors visit, or if it can wait til then. I don't see him having the patience to hang out at emerge for several hours just to see a doctor. He shut down that suggestion quite firmly the other day. I just don't know when to insist. Or how. I try to explain things to him, and he turns around and says he is quite capable and I am actively trying to confuse him.
yet at 3am he was completely lucid.
Posted by WestCoastSailor on Dec 26, 2019 9:31 pm
I've been trying to find a few minutes to make a couple of quick comments on your situation. About a year ago I found myself in a similar situation with my wife's pancreatic cancer. Battling morphine hallucinations and trying to get pain under control. Unfortunately they didn't get my wife's stent in and she died six weeks after diagnosis though they had initially given her three to six months as a prognosis. She had a major complication with an aortic thrombosis - essentially a blood clot reaching into her heart.
If you can find a referral to a pain and symptom management specialist sometimes referred to as a palliative oncologist, that would be ideal. My understanding is that the liver can have difficulty metabolizing the morphine and so it continues to build up in the body causes increasing drowsiness and difficulty with comprehension. In our case when they realized how far the cancer lesion had advanced she was transferred to hospice and literally within four hours I had my wife back - sober and lucid. She was put on fentanyl and eventually dillaudid.
I would say that time is of the essence as things can go bad in a hurry with pancreatic cancer and emergency may be the only way to get the referral that I mentioned above.
Posted by Cynthia Mac on Dec 27, 2019 7:48 am
Isn’t interesting that some patients turn everything around and begin eating healthy and others cling to the beliefs that it wasn’t anything in their lifestyle that contributed to their disease?
I agree with WestCoastSailor - the sooner you can get your hubby’s medication effects reviewed, the better it will be for him, and no doubt, for you. You mentioned that he was lucid at 3:00 a.m. the other night. My Dad had a bad fall last month, and we were both up in the middle of the night one night almost a week later. He’d been resisting going back to the hospital, and I just said, “Things should be quiet at emerg now, Dad, why don’t we take a run in?” We headed in to the hospital about 2:30 and we were on our way back to his place by 4:30, after he had another x-ray, and we got him some better pain medications.
I find the best time to go to emerg (if you have a choice at all) is between 3 and 7 a.m.
Posted by Laika57 on Dec 27, 2019 1:08 pm
Didn't take his pills. At least he let me check his blood sugar and prep the insulin, and when the sugar still went up, didn't fight me on calling his diabetes advisor to check what was going wrong.
Turns out he must have lost his newest sliding scale of when to take what. Got that all sorted now.
He hasn't taken any pain meds today. and is still struggling with reality - which makes me think that some of the other comments on morphine i read on these boards are spot on - he is not metabolizing it properly, so it is just adding up and up.
wonder if i got a nurse from the telehelp on the line to tell him he needs to see a doctor, whether he would listen. because "i am confusing him on purpose." - i am sort of waiting for the stuff to wear off and him getting normal enough to have a conversation, despite the pain. or he'll take the other morphine and pass out so i have a valid reason to call an ambulance.
at least, in his addled state, he thinks i took him to LCBO and thanked me for that. Very much looks like i have been ignoring a budding alcohol problem. But then, his self control has always been better (today i got up and a bottle of wine i had saved for a special occasion was half empty. - found a giant glass of it in the office). it's like now he is giving himself permission to do this, because wtf is he going to hurt now. other than everyone around him and himself.
can't say i blame him. i have to work hard not to drink up the glasses he leaves everywhere. and whining about the inconvenience is making me look petty. i just dread the "conversation" if/when i get rid of all the alcohol. i thought i could control his intake, but a girl's gotta sleep.
Now I have to start getting some work done. Bills to pay (which and how i have yet to figure out, because he always took care of those, and he can't remember the difference between a password and a pin) and earn some money - he is/was our primary sales person, and now i've got to take over the front end of our business as well. I don't even have contact info for half our clients, no appointments written down.
Him being smart enough to do everything in his head and now not even recalling how to make a phone call is probably the most upsetting part. Really makes me think i need to be nicer to my friends whose husbands have Alzheimers.
Posted by Laika57 on Dec 27, 2019 1:38 pm
Not in a bad way, but instead of calling my husband's doctor's office (not taking phone calls for the holidays til after his appointment) to reschedule his CT, i called the diagnostic imaging department directly. Voila, an appointment on the 30th, in time to get the results for the 2nd, so we can actually move forward with this instead of having a pointless (no extra info) doctors visit and then waiting for the CT and then another doctors appointment.
Should have thought of that sooner. lucky it worked out.
Posted by Brighty on Dec 27, 2019 1:51 pm
Posted by Ten77 on Dec 27, 2019 9:51 pm
so many great suggestions above I won’t repeat what they have said.
you are not in this alone, you own your behaviour but not his. Do what you can within your limits but you can’t change what he chooses to do.
Posted by Cynthia Mac on Dec 28, 2019 8:26 am
I wouldn’t say you’ve “been ignoring a budding alcohol problem,” but it is possible that you haven’t wanted to acknowledge it. Now that you see, it, though, I’m sure you know how important it is not to enable it, especially given the complications of diabetes and the medications he is on. I had an uncle who, along with one brother was one of those “crafty” alcoholics Brighty Mentioned. He used to hide booze in his work toolbox. My Mom had a boss who used to keep a flask in his jacket pocket hanging behind his office door.
As for “taking care of [him]self, thank you very much,” I’d say you have enough evidence to prove the contrary, and I would try to use that as a negotiating point.
Your idea about having a telehealth nurse tell him to see a doctor is a pretty good one! I used that tactic with my Dad recently, when he was balking about getting a fall monitoring system. I talked about it with his oncologist’s assistant in the room, and she played right along, saying “That would be a really good idea.”
I am sorry you have found yourself with such a difficult patient, and I wish there was more I could do to help.
Posted by Laika57 on Dec 28, 2019 2:32 pm
he's not touched alcohol in a day now. Wonder if there's a correlation to the morphine, or it just hasn't occurred to him to look for it. Not drinking seems to help a bunch. But he's also sleeping a lot again. So not taking the time to eat much.
I got a bunch of frozen food, at least if he insults that, I don't take it personally. And he likes jello. And granola bars. At this point I figure I don't care much what calories he eats as long as he does eat something... me, I'm stuck eating the stuff he's turned down. Yay chicken soup, I'm beginning to understand what's "wrong" with it. So much for making a bunch and saving myself extra work later. At least the dog likes it too, so that helps. he gets me out on walks and doesn't argue. Cheap therapy :)
@Ten77 good point with the narcan kit. I don't think he takes pills without my promoting him, he appears aware that he is confused about those.
I keep tabs on what he takes when.(and have counted the bottle contents) So if there are patterns with symptoms I can figure them out.
Posted by Cynthia Mac on Dec 30, 2019 9:31 am
You and your husband should have several things in joint name going forward - at least one bank account, ownership on the house and vehicles, and even some of the household accounts. This does two things: it makes transition easier when the day does come that one or the other of you pass away, and it makes sure you develop a credit rating of your own.
If you haven’t had your wills reviewed for a while, it might be a good idea for you to contact your lawyer. He or she can explain the reasons why this is a good plan better than I can.
The idea of these suggestions is to pave the way for the road ahead. After my Dad had a bad fall recently, and couldn’t get to the bank, he changed his accounts over into joint, so that if anything happens to him again, I can carry on paying the bills.
Posted by Laika57 on Dec 30, 2019 9:56 am
here's hoping I can get him to his CT and he will do something obvious that a nurse or doctor will step in.
no dice on joint ownership etc. when he got diagnosed, he was going to do the will, and cars, and accounts, etc, and by the time the morphine kicked in, it all went out the window.
not much to lose really, the cars need fixing and the landlady just served us an N12 (move out so she can use the property for herself), which he might have been wanting to fight, but I don't even know if I want to bother. It's an expensive dump with shoddy wiring and I am in a foul mood because he's kept me up since 3am, wildly swinging between normal, calling me a nazi, apologetic and threatening suicide. Maybe that would perk the telehelp nurses ears up. But he won't talk to anyone.
Now let's see if I can get him in the car....
Posted by Cynthia Mac on Dec 31, 2019 6:12 am
Remind hubby that the CT scan is a pre-set appointment, that you can arrange a patient transfer for if he won’t go with you. (It might be an idle threat, but how will he know?)
And, yes, if he is threatening suicide, his doctors should be made aware of that. Today.
I wish you luck today.
Posted by Laika57 on Jan 1, 2020 8:32 am
the drive there was another matter. He is very skilled at saying hurtful things whilst on morphine. Makes me wonder how much of that is on his mind without the drugs.
anyhow, that evening I quit giving him the slow release morphine, it was a fight making him take it anyways. And yesterday he was almost back to normal. His color and appetite improved.
he's still got pain but the regular morphine doesn't seem to addle him as much and he needs a lot less.
Of course he still believes I was out of whack whilst he was taking the drugs, not him.
anyhow. Before he decides he needs to take them again, I have a small window of being able to sort things out. Phew.
Posted by Kuching on Jan 1, 2020 9:54 am
One more quick thought: I’ve found that when I need to mess around with my husband’s drugs, (and , like you, I sometimes just have to) it’s easier to call the pharmacist to check and make sure I’m not doing anything dangerous, rather than the doctor. The pharmacist knows the drugs better than the doctor does anyway.
You are probably getting really tired of being told what you should and shouldn’t do by now. There’s just too much to deal with. I’m usually a very organized person, but some days I feel like I need a secretary to keep track of it all, make the calls, deal with the drugs, never mind normal day to day stuff. I have a neighbour whose husband died of cancer 4 years ago, and she has been a huge help with getting set up with home visits from nurses, social workers, etc. I hope you have someone like that, and don’t be shy about delegating if you can - most people want to be able to help.
Hang in there!!
Posted by Laika57 on Jan 1, 2020 11:37 am
I actually talked to a pharmacist after he had that dizzy spell when they upped his morphine dose (doctor told him to take two and he added a sleeping pill... was weak as a kitten for a day).
I have a list on hand of all his meds and had the pharmacist check it. There was one painkiller he had previously that apparently doesn't mix with morphine but everything else seemed ok to her.
I'm keeping a journal of when he takes what and what side effects he is exhibiting (I'm pretty sure he's got almost every single one mentioned for morphine. But hey, he won't see a doctor about it. I will bring that list to the appointment tomorrow. I'm honestly debating to tell them that, if he doesn't get his meds fixed, they need to assign him a nurse and a social worker, as I won't be taking care of him. He actually punched me in the arm when I refused to let him drive to the CT. That ought to be an understandable reason. And a symptom they should take seriously.
I also can't reason with him about his insulin or meds (or driving) when he is in that state. He missed a few days of insulin that way. And pulled off his glucose sensor so I can't check his blood sugar without his cooperation anymore - that wasn't to spite me, he just woke up thinking he'd worn it for over a month... his telling people I am whacked, doesn't help getting them to help me help him. (Like, I called the hospital and asked his CT appointment to be changed, they called him to confirm a time, and he told them not to talk to me. So I couldn't call back to verify the time he gave me was the right one. I tried, they didn't answer any of my 7 phone calls. So we were either 45 minutes early, or 15 late, I don't really know. And don't care at this point. )
He actually almost got into a fight at the hospital, he was talking about not having bus fare, and as I explained I was driving him (again) he began swaying, so I made a grab for his arm, and he told me to f#%! off. A bystander jumped in, telling him not to talk like that to a lady, especially one who was giving him a ride home and how lucky he was. At first he argued, then did a complete 180 and applauded the guy for standing up when others wouldn't.
I just hope tomorrow will bring answers and changes. I am undecided whether I should give him the morphine to make the doctor see his reaction, or not, so he can make an informed decision on his treatment. - then he will just downplay the mental stuff though, or say i am the one imagining things. (Like horses in the back yard, the laundromat in our basement, and people sneaking into the house...)
Posted by Kuching on Jan 1, 2020 1:04 pm
And yes, tell them he hit you, and that a bystander had to intervene when he got rude, and that you are scared for your safety and his, and you can’t cope. They pretty much have to do something then. With my husband, I had a meltdown at a consultation, said I couldn’t handle it any more, and they immediately admitted him to the hospital to sort out his meds. It was 5 weeks before he finally got home again, but it was worth it.
it would be tempting to give him his morphine tomorrow, but you don’t want him freaking out while you’re driving. Your call, obviously. But lay it on at the meeting! Good luck, and let us know what happens.
Posted by Essjay on Jan 1, 2020 3:03 pm
And if he won’t sort out a will, will he at least sort out power of attorney? We sorted this last February alongside wills (actually before my breast cancer diagnosis), and the lawyer said POA was the most important thing for both of us. What if something happened to you, and he needed to sort things on your behalf - it works both ways.
I have a friend who ended up calling the police after being beaten by her sick partner. He ended up in hospital and court with an injunction, until things were put in place to help the, stay together. They had to stay apart for a while. It was an awful time, but it did result in more help being made available to them, including someone to sleep over a couple of nights a week to give her some proper rest, which she really needed.
As @kuching says, lay it on heavy at your appointment tomorrow - it really sounds like they need to sort his meds - diabetes and pain meds etc, and he may need to be admitted to hospital so they can watch his reactions. This would give you a break, and hopefully get him more stable.
Posted by Cynthia Mac on Jan 1, 2020 7:22 pm
He has threatened suicide and struck you. Either one of those is cause for his medical team to take action.
Your safety is paramount, and if he injures you to the point where you cannot care for him, where will that put him?
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