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My husband recently diagnosed with pancreatic cancer

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on May 25, 2020 2:14 pm

No. Just no. What he is doing is emotional battery. If he were beating me regularly, you would not be telling me to learn how to cope.
I will not adjust my expectation to be treated with respect, just so the system doesn't have to assign him a nanny. 
I have given him so much slack for his moodiness, tried to mediate between him and everyone he's been offending, tried to take care of his appointments and medications. And noone gives a crap. Least of all him. He gets angry if I check up on what he does - nevermind leaving the stove on or the front door open when he heads out could create a serious problem. He gets angry when I try and tell him to take his meds. He also gets angry if I don't remind him...

IF he seeks help, I will consider talking to someone and making things work until he is better able to act like a decent human being.
I am not a punching bag, and definitely no saint.

Seriously, where is the mental health aspect of cancer treatment? Do they just tell everyone they're most likely going to die, and then give 'em some pills and ignore the very real emotional fallout?

Re: My husband recently diagnosed with pancreatic cancer

Posted by KerriKerri on May 26, 2020 1:43 pm

Laikia57, I've just waded through 12 pages of your ...saga, and my respect for you, my dear, has no limits. You have managed to keep your sanity  (or relatively so) under the most trying personal circumstances; not many people could do what you have done.

My perspective is perhaps a bit different from most people; I worked in Long Term Care (Nursing Homes) for 26 years before retirement which means that I saw the long term effects of various diagnoses and in this instance, the more important effects on the life of the primary Caregiver. Note the caps on that. Every primary Caregiver deserves that capital letter. For whatever it's worth,  my oldest son (now 50) has cognitive difficulties which have him on lifetime disability. He lives alone, His choice. For my health and safety, no argument from me.

You don't need me to tell you that there is a breaking point but perhaps hearing it from someone outside will reassure you that admitting that out loud is not a personal flaw; it is a mark of strength. One of the most difficult things I had to learn is that there has to be a point in which self-preservation kicks in. Where you say," I can't so this." 

What happens if you collapse in the middle of this? Who takes care of what? I've seen caregivers...well... no need to expand.

A tentative suggestion. Have you looked into a 'Respite" placement.? Long Term Care and such facilities usually have a bed or two that is reserved for an emergency placement. It's not permanent, although sometimes it becomes so. I've seen a week or two of  24/7 care be a stabilizing factor in care as well as providing 24/7 documentation of various behaviors which might be just the ace you need to make your point. The big thing is that you will know he is in care and you will have time to look after yourself.

If sending him to Long Term Care is scary right now, and no, I wouldn't blame you if you said no, hospitals also have chronic care beds. The words, "away from" seem entirely appropriate. For a short while.

*Sigh* It's always one person who gets the lion's share of care. You need someone to advocate for you. When is the last time you saw a doctor for yourself? 

Not a whole lot of help, I know. I wish I could say or do something more helpful. *hug*

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on May 27, 2020 11:39 am

Well well. I did not have to threaten harm to anybody. I just left another message with the psychiatrist saying that if they have no interest in helping him, they should at least have the decency to call me back and say so.
may have left a few less than charitable reviews on the hospital Facebook page, but i doubt they've made that connection yet.
anyhow the social worker attached to the psychiatrist finally called me back and apologized because she [did not get my message] uh huh. I did not call her on the lie. Just too convenient. Like when I tried to arrange the follow up in january and did not hear back until april. She says she will talk to the psychiatrist and see what options there are.
Meanwhile the cancer center social worker called me back too, finally, and said short of sending him to a nursing home there isn't anything they can do to help him with his meds. He isn't that bad. Besides he would never consent to it.
and the meds are just a symptom of the problem anyways. But noone will touch on the subject of emotions.
Well, his GP gave him a referral to LINK, and the social worker gave me a number at LIN to cal. We shall see what comes of those...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on May 27, 2020 11:57 am

KerriKerri‍ thanks. I didn't see your reply until just now. Definitely something to look into. Things are better whenever he's at hospital, to a point. He will still call and put pressure on me to get other things done, so unless they also take his phone away, I don't see much of a stress relief. It really isn't as much about the physical care as about not getting an emotional/cognitive break.
with reactive dogs they talk about trigger stacking. I think in human care the call it the spoon theory. I can deal with x y and z separately, but add them all up and the next thing will take it over the top, no matter how small it is. (For example, I have always been somewhat phobic of making phone calls - I can do it on normal days, but stress me out and then tell me to call someone and I am paralyzed - and he will sit there and kick and scream and tell me I am totally capable, I do it all the time and why can't I do it now that he is asking,  and every word he says makes it harder and harder for me to pick up that darn phone.... ).
I am working on controlling the small things i can, but it really just feels like putting a band aid on a broken dam...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on May 27, 2020 2:49 pm

Laika57  totally get that its hard to make those calls under pressure. But you've been making so many other calls, and you clearly got the psychiatrist sorted so you know you can do it...

Sometimes I find it helps to put the number in my contacts first, then to make the call I just have to select the number and press call - less actions to do... 

Well done with the psychiatrist by the way - you are such a Badass!
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on May 27, 2020 4:18 pm

Essjay‍ lol i have all numbers programmed. Helps knowing who calls and makes it easier to answer the phone.
anger helps quite a bit when making calls too. Hubby said not to yell at people and I replied, "it's either them, or you. Pick one." It made me pause when he said I should rather yell at him.

but I'm back to believeing they don't listen unless you have a full on meltdown that they can actually observe. Now that there are some conversations going, and people actually looking into getting him some help, I am a lot less frustrated. Not sorry, I had been asking for help since December after all. 
This afternoon the social worker actually told him to not give me a hard time for trying to help. Because she had just gotten him to admit to needing help sometimes, he couldn't argue the point.
Wonder if they get coached on talking people into seeing reason. I should sign up for that class...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 2, 2020 1:20 pm

We have a surgery date. Next Tuesday, the 9th. 
Provided they don't change it again. Pre-op is tomorrow. They don't give you much of a heads-up, do they. 
So, 3 appointments, pre-op, covid & surgery and i doubt i will even be allowed into the hospital for any of them.

Any recommendations on things to pack in his bag? they don't allow for drop off of non-essentials either.
typically, it would be his shaving kit, granola bars, boost, and a phone charger. oh, and a set of clothes to wear on discharge day.
debating on the granola bars, since solid food won't be on the menu for a while, and nuts are a bit more than solid...

anyhow, wish us luck. i am all jittery already...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jun 3, 2020 6:59 am

Laika57‍ , try not to be jittery: you’ve waited a long time for this!

I agree - granola bars might not be good. What about shelf-stable pudding cups or fruit cups? Truth, the hospital will have anything he wants. I got a call from Dad’s dietician yesterday and we set up his menu for the next week.

I hope everything goes well for him. As for you: just breathe, ok?
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: My husband recently diagnosed with pancreatic cancer

Posted by Kuching on Jun 3, 2020 7:47 am

Laika57‍ , that’s great!  You have a date.  Things are happening.  And he will be somebody else’s problem for a while!

As for packing, maybe something to read?  And reading glasses, if he wears them.  And then just whatever you think he would be phoning you to ask for!

Wishing both of you the best of luck,
Kuching

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Jun 3, 2020 8:30 am

Laika57‍ ,

Congratulations on the progress and the surgery date.  

You'll have some down time to sort yourself out after his surgery and before he is discharged, please use some of this to recharge your batteries.  

Will keep you both in my thoughts and prayers.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jun 3, 2020 8:46 am

Laika57‍  sooo happy! You waited and fought so hard for this!!  Finally !!!!!  The hospital  will have everything  he needs likely.    Maybe just a toothbrush and a book or magazine.       I hope now you can relax a bit and take time for yourself.     
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 3, 2020 12:21 pm

One step forward and three back.
yesterday a social worker called to evaluate what help he needed. He told her he didn't need help. Maybe I did. I was upset the doctors don't talk to me. And then he proceeded to regale her with stories - nothing whatsoever to do with our current predicament.
That upset me so much i spent half the night crying and when he asked what was wrong, I ended up yelling at him.
he had PROMISED he would get help. But nope. He won't even do the blood test for the psychiatrist.
then today I managed to get him to his pre-op, on time no less. where he was less than cooperative. Wouldn't talk to the registration nurse nor fill in the forms. I'm halfway certain he's going to bail on the surgery. 
and he's told me to move out. Again. Why? Because when he asked to stop at a bakery, i did not go in to buy stuff. note, this was after driving him to Tom's hot dog place (closed), ikea (lineups!!!), starbucks (no washroom) and taken the slow way home so he could talk on the phone...
I've not had breakfast or coffee. Yeah maybe I should just have indulged him and got pastries (without any money of my own, since I just spent it all on his internet and car payments - I could possibly afford a Danish if I dip into my savings, but by the time the transaction fee was processed I'd be overdrawn.), but nope. If he wants to spend money we don't have on sweet crap, and not take his insulin, then I won't be enabling him.
why the heck didn't I just strangle him back in December? Ah wait. 15 pretty good years still had me sentimental.
wish me patience. Just have to get through 5 more days. Somehow. 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jun 3, 2020 2:04 pm

Laika57‍  at this point you have to talk to the social worker  to keep your sanity.    If he won't co operate, you have to save yourself.   I'm so sorry.   I see so many parallels to my situation and I feel for you.   My fiance  would not talk to the social worker, refused to go to chemo teaching , almost bailed on the surgery to get the feeding tube in.  Then asked me to get lost because  I wouldn't stop on the way home at the liquor  store.    It was the deep love and the good years I had with him before that kept me .   I Knew he wasn't himself anymore and he suffered tremendously with the cancer.   And of course neither of them wants us to get lost... where would thry have been/ be without us?    My social worker taught me that I need to set boundaries.    No matter how much he was suffering,  he was not to treat me like that.     I wish for you that you could get a break or some help.        Do something special  for yourself.    Even if it's only a nice ice cream of nice take out meal.   You deserve  a metal actually.      I hope you will find someone  you trust  to talk to. Please don't bear this burden all on your own.    Don't be ashamed  to confide in your friends.   You need an outlet and someone to help you or cheer you up.     
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jun 3, 2020 2:22 pm

Laika57‍ we are counting down the days with you. You can do it xx
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 3, 2020 2:32 pm

Brighty‍ yeah. I am looking at some counseling for myself. And starting to talk to people.
I have a friend whose husband has Alzheimer's. She's been hanging on much longer than I would have. Continuing to feed and take care of him even after his doctors suggested they quit feeding him two years ago (there really isn't anyone "home" anymore, but she refuses to let him go).
she's a fountain of advice and talking to her puts some perspective on things. She's also very supportive and has gone through a lot of the same things. - the memory issues, the temper tantrums. The burnout... we don't agree on everything. But I have so much respect for her, more every time we talk. Goes to show how oblivious we all start out...

hubby seems to have calmed down now. He feels I am taking over, where I feel he isn't participating. Heck, I'd be all over this and giving the doctors lists and details, and his attitude is limited to answering questions directed at him.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jun 3, 2020 2:36 pm

I'm sooo happy you have someone to talk to now Laika57‍ ! It's ok if you are 'taking over' he'd be lost without  you.  
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jun 4, 2020 9:16 am

Kuching‍ - “whatever you think he’d be phoning you to ask for.” - this made me smile, as, by now, I’m sure Laika57‍ Has a complete list!

Runner Girl‍, love your new profile pic!

Brighty‍ , I remember you going through those days!

and, Laika 57, I’m sorry money is that tight right now, but at least it prevented you from enabling him this time! Hold on tight. Afaic, it sounds as though you should be taking over. It’s sounded that way for several months now, what with his episodes of delirium etc.  Does he understand that this surgery is an effort to keep him going? 

I’m wishing you the patience you seek.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 4, 2020 1:31 pm

Cynthia Mac‍ if only he could find it in himself to admit to needing help....
ah well. i have to work harder on my female manipulative skills :)

I'll try get a hold of a dietitian at telehealth so i can find out what types of foods etc. to get in for when he gets back.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jun 4, 2020 1:41 pm

That's a tough one Laika57‍ .  Mine would never admit he needed help.   I even snuck a social worker in one day.   He refused to speak to her.     
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jun 5, 2020 10:05 am

How are you doing Laika57‍ ? three days to hubby's surgery...
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 5, 2020 11:33 am

Essjay‍ so so. We go from arguing to reasonable. I think we're both rather stressed.
3 days you say. Time to fix the pill box. No more blood thinners.
The surgeon and anaesthesiologist both seem capable and confident. So that helps. And St. Joseph's seems to be a more can-do kind of hospital. More courteous too.
anyhow. Got the covid test done this morning. We were there an unprecedented half hour early.
now I'll just have to read through the literature for how to prep. And get stuff organized....
no idea how I will wake up early enough to walk the dog and get hubby to hospital for 6am on Tuesday.
but I expect we'll make it happen.  

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jun 6, 2020 8:23 am

You’ll manage it, Laika57‍ - you always do!  Still I recommend setting an alarm or two on your phone! 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jun 6, 2020 8:04 pm

Are you staying with hubby at the hospital? Could you whip the dog out for a quick 10 minutes before leaving then give him a longer walk when you come home? Is there anyone you could get to come by and walk him? We use daycare and boarding which have been sanity savers a few times...

You will end fine - most likely with the early dawn and birds singing, plus worry about hubby you will wake early.

enjoy some time together this weekend xx
Triple Negative Breast Cancer survivor since July 2018