Seeking advice and wisdom for terminally ill mother in law

[MamaToABeautifulBoy]

My MiL is 80 and 6 months ago she was
given 6 months to live, 9 months if she had chemo. She took the chemo and here we now are. She is not in a lot of pain but has no energy and is very depressed. The doctors have said no more exploratory scans or tests. She just has to wait. It’s utter hell for her and for her DH and my DH, her son.

She has anxiety and has some sort of meds for that that she can take as and when required, but they don’t seem that effective.

She and we don’t talk about ‘it’ much at all, which is clearly what my MiL wants, I think. It’s hard to tell. I’d rather talk about it as it’s a huge evil elephant in the room, although of course my opinion doesn’t matter. I’m not the one dying.

My FiL is stressed beyond belief. My MiL has what I think is terminal agitation. She is argumentative and often tries to start arguments (with all of us). We don’t ever react.

Is there some help we can get with her care? They live far from us so we can’t pop round and we also have a young baby and stressful jobs. Having said that, we are very supportive and would drop everything if asked. We do a lot for my in laws. As much as we practically can.

Does anyone have any advice or tips on how we can deal with this heartbreaking situation, emotionally and practically? We are all so overwhelmed.

Thank you.

I don't have much useful to offer but wanted to express my sympathy.
I suspect that we are about to be in a similar situation with older family, one of whom won't even countenance making a will.
It's so hard if people don't have a faith and are so worn down by their illness and anxiety that the 'let's make most of time we have' mentality that sometimes eases the path of younger departees doesn't apply.
I wonder if there are any charities or hospice outreach who may be able to offer advice. If religious at any point local vicar, priest , rabbi, iman might be sympathetic if she is receptive to a chat.
Thinking of you x

When a patient has terminal agitation, they have days (maybe weeks, but almost never) left and are not really conscious. She sounds logically frightened and anxious. Does she have a hospice or palliative care team? Perhaps that’s worth discussing. It might also be worth DH taking FIL for a bit and maybe you could broach the subject with her woman to woman. She may not want to risk the reactions of her son and DH. (People in her condition usually worry most about what they are leaving behind and don’t want to risk upsetting them.)

You need to speak to your local hospice or palliative care team. They will help.

I'm in this situation with my mother. She was given 3 months and no treatment could start. Get in touch with a local hospice and the oncology palliative team and they should all be able to help and advise. Ours have been great, visited us at home several times, sorted out all the equipment she needed before discharge, helped set up benefits she can claim etc. My mother was discharged from hospital with the emergency care team from the community nurses who come in 3 times a week (could be more if I wasn't staying), and will have a care package put in place until she goes into the hospice for end of life care in her last few days. The community team and the hospices work very closely together so they will be all be able to offer you any support you need including do your own mental health.

Also contact GP to discuss controlling her anxiety and any pain she might have.

Absolutely agree. Some hospices have day hospices where people can come for the day have a nice lunch chat to other people. Some offer hairdressing and manicures. Ask yourr GP to refer you.

Terminal agitation is a state of semi-consciousness where the person is distressed, confused, restless and calling out. It usually signals days or hours before death.

I think your MIL is likely to be depressed, fatigued, possibly more symptomatic than she is letting on, losing control and frightened.

I would seek a referral for her to your local community palliative care team.

Yes your hospice team, district nurses or palliative care team should be able to help. She is likely to end up in some pain with cancer and so the palliative care needs to be put into place now.
just echoing that she may need a stronger dose of anxiety medications and antidepressants for now.
terminal agitation is indeed different and involves things like shouting out, picking at bed clothes, trying to get up etc. The palliative care team can help with sedation for this but it usually is at the very end of life.
sorry you’re going through this, it’s very hard

I understand that she doesn't want to talk about "it", but do you know where she wants to die (ie at home, hospice, hospital)? If you know that, it would help to make decisions. Second the comments about contacting hospice, or Macmilllan, Marie Curie charities. If she wants to stay at home, Red Cross may be able to provide a hospital-style bed, which makes care so much easier.

If not already in place, a DNR order needs to be discussed ASAP. Most (If not all) medics would never want their own relatives to be resuscitated as it is brutal and inevitably fails.

As the in-law, OP, it probably falls to you to be the practical, organised and unemotional one. Maybe you can start to do some quiet research 're what needs to happen after the death, as it's helpful to be well-prepared. Your husband and his father will be making decisions - some of which you may not privately agree with - and you will have to support them with those.

https://www.brigittetrust.org/.

Is she under a palliative care team/the local hospice?

My sister's strategy of dealing with her terminal cancer was to Not Talk About It At All. It was a bit weird, but we went along with it.

Surely she's been referred to the palliative care team? That doesn't necessarily mean hospice care, but in my late husband's case it involved having a designated specialist nurse (provided by Macmillan) who set up everything that we needed for his care, from a fast tracked blue badge, to all the benefits we were entitled to, to a day a week at the hospice (with transport) just for activities and emotional support if he needed it, and all sorts of equipment for our home. Oh, and some carers respite for me.

You/she shouldn't be left having to sort this all out for yourself. I'd definitely look into what she should be receiving. If the hospital hadn't sorted it, maybe you can call her doctor, or just contact Macmillan yourself

Thank you all for your suggestions and supportive advice.

The hospice have been in touch with my MiL but she was offended by the contact and thought it inappropriate as she isn’t ‘actively’ dying.

It’s v hard as I do think we, as a family, need to broach some of the important issues but my DH and his father are v reluctant to do so. I do understand this, it’s their mum / wife. It’s all so, so hard. I do need to stand up and be strong for my DH and FiL and start focussing on the practical aspects. It’s tricky though as I don’t want to tread on my FIL’s toes, he’s a proud man.

My MiL said she wants to have a scan to see what’s going on but my FiL said he doesn’t want to know. I understand his feelings but I said I would arrange a private scan if that’s what my MiL wants.

Your last paragraph is such good advice. You are right. I need to be strong for my DH and FiL. We are all sleepwalking at the moment.

So sorry to hear about your sister x

thank you for the link.

Speak to GP. He will put you in touch with district nurses and palliative care team. The GP can prescribe an End of Life package from the pharmacy so the nurses have the medications available when they are needed.

I think it is normal to stop doing scans once treatment moves to the palliative stage. I think it is just seen as pointless and potentially depressing. My df also found it painful and uncomfortable to drink enough fluid pre scan but this might vary with different cancers.

They don't offer scans if it isn't monitoring treatment. Obviously you are free to pay for whatever you like but if someone is deteriorating - losing weight, less energy, pain getting worse - then you aren't going to learn anything you didn't already know from a scan.

People often think another scan will be helpful without really thinking through how they will feel that their cancer has grown, which is usually what does happen when you aren't having any treatment. Or they wrongly think the scan will convince their oncologist to start up treatment again.

So sorry this is happening to you, it’s absolutely heartbreaking, sending big hugs 💕

I think this article is quite informative, and for me there’s comfort in understanding : https://resources.amedisys.com/treating-terminal-agitation

Sorry to hear that you are going through all this. I lost my mum to cancer over 20 yrs ago. Fortunately for us she was an ex nurse and was organised and pragmatic. She organised everything with the palliative care team and desperately wanted to die at home, but events overtook and medical complications meant she had to go into the small palliative care ward. They were fantastic and my mum had a good death. I know it sounds weird, but it is so much easier than the fight that some experience.
It is probably too early for your MIL to plan, particularly if she is still coming to terms with her diagnosis. The diagnosis of cancer and any treatment is traumatic enough, but to be then told you have months left is devastating.
Give her a few weeks, having another scan may be just her clutching at straws. If it confirms what she has been told it may help her progress.
Spend quality time with her, she won’t thank you for hanging around with long faces. Do normal stuff and if she opens up just listen.
The palliative care team will be used to her reaction, few people go happily from well to dying. They will be there when she needs them.

Maybe chat to your FIL about their wills and if there are any changes she wants to make. She is more likely to have opened up to him.
Plan everything as normal, such as Christmas and birthdays.

Don’t forget that she is still your DH’s mother and if he has a good relationship with her and has often turned to her for advice and comfort encourage him to carry on. My mum gave me a real telling off for keeping quiet about a miscarriage I had not long before she died. As she said she was still my mum and it was her job to help me through that sort of stuff.
If your MIL wants to carry on as normal that’s what you have to do. If your FIL and DH are struggling contact Macmillan, who can provide all sorts of support both before and after. They also provide support for children who are affected and have a lot of literature you can access.
Your main concern is your DH and how he is going to deal with everything. Allow him to talk, shout, cry or just take time out. There is no right way to feel or be, we all deal with this process differently. Grief has no timetable but with a terminal diagnosis it often starts well before the loved one actually dies.

Death by cancer isn’t always a comfortable thing to watch, although if your MIL accepts all that is available it can be very peaceful.

Most of all be patient and calm, it’s likely to be a rough few months. Take time out yourself so that you have the emotional and physical energy to be the support they need. If your own parents are around maybe arrange for them to look after your children so your DH and you can take time out to talk without distraction.

My DH was my rock he was just there when I need him particularly when I just wanted to bury my head in his chest and sob.