things are getting worse - how much longer?

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

as you may know from my previous posts, my future mother-in-law, with whom i have a strained relationship at best, i suffering from stage iv pancreatic cancer with metastases on her liver and ischiatic bone.
she spent about a month in hospital after she stopped eating. an intestinal blockage was bypassed and she can eat again, though this works only in theory.
she was allowed to come home a week ago today and my fiance is looking after her here. she is being treated with tarceva.
she eats almost nothing, throws up a lot and suffers from very severe diarrhea, especially during the night. she is still able to walk short distances and we take her for a walk every day. though she has many visitors, she barely speaks to them or anyone and shows no sign of interest and enjoyment in anything.
i have no idea how she feels, but i am fairly certain this is a common enough reaction to her condition. we have spoken to the doctor about giving her antidepressants, but the doctor doesn't seem to think this a good idea.
yesterday, my future sister-in-law asked me when i would be leaving, as my future mother-in-law would prefer me not to be here. this may sound harsh, but wasn't meant so, it is an accepted fact that my fiance's mother is opposed to our marriage.
i told her that i was here on my fiance's request and will stay as long as he wants me to. when i told him about his mother's wish for me to leave, he refused to give in to her. (note how all these conversations are going through intermediaries, direct communication is frowned upon in this house.) i shall be staying with him, i think he needs me more and more. yesterday was a particularly bad night, she soiled the bed more than once and little sleep was had.
my own reaction to these events is unhelpful. for a few days, i was almost unable to eat and last night, i could not sleep until dawn. though his mum was under orders to call my fiance when she needed help, i know she doesn't want to be a burden. indeed, i had to wake him at least once because she refused to call for help when she needed it.
in the end, he made me go to sleep, because he wanted to be able to hold me. when i did finally fall asleep, i had a strange dream. that in itself is normal, i always have intensely strange dreams, but this was novel. i was diagnosed with cervical cancer and even though my life was barely in danger, i didn't want to undergo chemo and everything that goes with it. i was also so upset because i felt guilty that i might not be able to have children. it was a very strange dream indeed and oddly terrifying.
when i am awake, i am much less worried about my own health than is usual for me, more concerned that i might lose my fiance to pancreatic cancer years from now. should i worry about this? is there anything we can do to prevent him succumbing to a disease which has claimed members of his family for several generations?
i would appreciate any and all advice you care to give me. please do not think badly of me for my unkind and bitter words, things have not been easy of late.
i also wonder how much longer this situation is likely to continue. it seems like she has lost all will to live. how much longer does a weak body carry on, almost as if out of habit? i would never wish for anyone's death, but apart from the stress of looking after her and the pain of watching her fade away like this, my fiance - her sole carer - has work to return to. we normally live in a different country and he is meant to finish his doctorate by september, which is looking more unlikely the longer this goes on.
i am sorry if i seem cold and uncaring, i am not. i do care, even about this woman who dislikes me so much and i don't like seeing her suffer, but my main concern is my fiance. i worry what this will do to him.

Adagio7780

Obviously this is a very difficult time for everybody. The patient may not know, let alone be able to deal with, all that is going on. That you do the best you can under the circumstances is all anyone can expect or ask. Good luck with all you are trying to handle.
_________________
Man tracht, Got lacht (Man plans, God laughs)

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

i know there's almost nothing anyone can say in this situation, but things are getting really quite bad. she barely eats and for the past two days, she's thrown up everything she has eaten.
i am not coping too well with it, but it's my fiance i am really worried about. i am not sure how much longer he can deal with this.
i have found a list of signs that death is more or less imminent on the NCI website, so i know what to look out for.
it is an awful thing to wish for anyone's death, i know that.
but can somebody please, please tell me that this will be over soon? how long can it take? please tell me that this can't last another month!
i am sorry for being like this, i know most people here have been through something like this and probably coped a lot better, but this forum is practically the only outlet of my despair.
even if you can't say much, i would really appreciate any answer you can give me.

Adagio7780

Is hospice involved in her care? If not, they very definitely should be. They can administer medicine to make the patient quite comfortable and can answer your questions far better than anyone here. Everyone closely involved needs to know that death is acceptable. The fight has been fought. Everything that could be done has been done. Now is the time for calm and dignity. If she doesn't want to eat, that's perfectly ok. Letting her go is not something you are doing TO her, it is the last thing you will ever be able to do FOR her. Take what comfort you can in that.
_________________
Man tracht, Got lacht (Man plans, God laughs)

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

thank you for your reply.
on saturday, MIL was taken back to hospital after throwing up everything she ate or drank on three consecutive days.
they will do a CT tomorrow and after that, she wants to come back home. we will now liaise with the palliative care team.
actually, at this point, we have no problems with her pain management. she isn't taking any painkillers and says the only thing that hurts is the ischiatic bone tumor and even that is a fairly mild pain.
i worry that the doctors will now start feeding her artificially and she'll eventually die in a lot of pain when the various tumors really start hurting. is that a silly concern or is it likely to happen that way? any advice or experience you can share with me?

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

icedyaria:
Based on date of your last post you might have already discovered that the Palliative Care / Hospice team can do more than take care of pain. They have a whole range of treatments, drugs, etc that will minimize or eliminate symptoms ie; throwing up, GI Tract disruptions, etc.

The earlier they know about the symptoms - the faster they can help.....although some patients like to tough it out which in this case does not work because you know it's not just a tummy ache.

Doctors feeding - Is there a Living Will &/or Health Care Proxy in place?

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

well, it seems that my MIL2b won't have to suffer much longer. she has been back home since thursday and things are getting progressively worse, though she is still enjoying certain aspects of life.
she is obviously no longer able to eat, can only drink very little and a tube leads from her stomach to her nose to stop her throwing up incessantly. this contraption gets blocked frequently though and when it does, she suffers greatly.
my fiance puts her on a drip about twice a day, about a litre in total, the usual sugar and salt water solution with some pain killers and/or sedatives thrown in. other than that, all treatment has been stopped.
over the weekend, she had her family around her and even managed to stay upright long enough to get taken to the lake near her house and sit in the water. however, sitting up for any period of time exhausts her and at one point, she suffered violent shivers for a good half-hour after a period of exertion (i.e. being in her wheelchair).
this morning, we came to the conclusion that the end must be imminent. she suffered an epileptic fit after being lifted into her chair. the doctor has prescribed diazepam and a blood pressure medicine. on that note, blood pressure is 83/72 at a pulse rate of 120. she is sounding increasingly strained and hoarse when trying to speak and yesterday, her left eye was distinctly droopy.
this morning was dismal, my SIL2b was in tears and all of us very downcast. a friend of my MIL2b arranged for her priest to come to the house and we had a private service with communion (lutheran; i am catholic, but the difference is not a great one). one the one hand, this is meant to strengthen the patient, on the other prepare her for death.
it seemed to indeed make her feel better and after the priest left, she asked to sit up in her chair and be taken for a walk. this was against the doctor's advice, but she enjoyed it.
now we are simply waiting for her to go when her body is ready.
i assume it won't be more than a day or two from here on in. am i correct in this? i also hope that things won't get much worse but that she will simply slip away. again, please tell me if that is a reasonable assumption.
many thanks and god bless,

yaria

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

icedyaria:
The best I can say is that your instincts and observations are on point however, the "exact" timing is impossible to predict.
The Hospice team provided a paper summary (pretty accurate) about approaching signs of death.......probably available on line too.
There is also a mental & emotional piece for the patient = mostly feeling that everyone else will be OK & that everything will be taken care of as they wish..........providing some peace of mind will allow them to "relax" and complete the acceptance process.
Yes, very tough to see & experience but the caretakers can't be distracted by the inevitable ending so that they can listen & respond to the immediate needs that might shift & change frequently during this period.

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

i am afraid that she cannot trust that those she leaves behind will be alright, quite the contrary, i am sad to say. she has four children, of whom my fiance is the third. her eldest son, my fiance and her only daughter (the youngest, who is 29) are all obviously distressed, but they will survive. it is her second son who is the source of great worry. to put it bluntly, he is a selfish drunk and a complete and utter failure who has spent his life resisting all attempts to help him. he's given his mother nothing but trouble, yet she took him in when he was bankrupted some years ago. it should be mentioned here that this is a woman who is relying on government benefits for her living, so she has and had no money to spare. none of his siblings are willing to support him in any way after her death and though her cousin (who lives some 30 or so miles away) has promised to do her best for him, we all know that this is unlikely to do work out.
a few weeks ago, when i was discussing the situation with the partner of my fiance's best friend - she is well aware of my difficult situation in this family and at the time, i was considering eloping instead of facing a wedding with his family there - she stated that my fiance's brother was unlikely to be a problem in this respect. our wedding is almost a year away and by then - she said perhaps unkindly - he would probably have managed to finally drink himself to death. as i said, unkind maybe, but not unlikely.
there is nothing we can do to alleviate my MIL2b's concerns in this respect, since none of us are willing to make any promises regarding her middle son. the man himself feels himself to be the ultimate victim, as if it were only his mother who is dying.
i hope that after the communion service of this afternoon, my MIL2b has found strength in her faith to face up to death.
as i write this, my fiance is in his mother's room where he is taking the 'night shift'. tonight is the first night we've felt the need to institute such a thing. so far, his sister has slept in the room with her, but after a sleepless night yesterday, she has gone to stay with a friend instead and he will watch over his mother. he is the only one in the house who has any medical training (army paramedic on national service about 15 years ago and a Phd in a life science) and he is considered the most suitable to take the night shift.
he has been holding up very well, but i do still worry about him.
thank you for listening to my rambling narrative and ranting complaints. i will let you know when anything new happens.

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

icedyaria:
Family & Peace - sounds like it is tricky to say the least, but it might take a few "white" lies to bring peace to your MIL.........if she get a sense that her "affairs" and "most" of the family will be OK..........it will bring some comfort..........it might have to be repeated many times, then listen to her comments and respond down that same road. Even if she is quiet, just letting her know everything will be OK & her son wants her to be peaceful will be comforting.

Shifts - is a good thing - because it is an exhausting effort to caretake for long periods..........and the patient often does not have a set schedule. Divide and "conquer" the care work load certainly makes lots of sense.

Hang in there.........support your fiance........the best you can or just listen if that is what he needs.

icedyaria · Regular Joined: 24 Oct 2008 Posts: 22

my fiance's mother passed away at around 10.15 a.m. on wednesday. she died in her sleep after a difficult night during which she was talking incoherently for the first time and had to be fitted with a catheter in order to be able to urinate.
thank you for all your support and advice. i wish all of you and your loved ones well.
i will probably not frequent this forum too often from now on, but i will check in on occasion.
many thanks and god bless,

yaria

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