Not a happy subject (and v. long), but Mum is terminally ill and we're getting toward the final stage - need advice on what's next, and how to make her comfortable/happy

[Earlybird]

In a nutshell: Mum's cancer came back, and since late October she's been having chemotherapy. She was due to have 9 sessions, and has had 4. One was cancelled due to her being too ill, and the most recent session was cancelled due to her general poor condition. In fact, the doctor took one look at her and put her straight in hospital.

When Mum went into hospital 6 days ago, we were told a day later by the holiday rota doctor (not her own), that 'it won't be long now' and 'make sure her affairs are in order'. The immediate problem - soaring calcium levels - has been dealt with. But Mum is anxious, paranoid, hallucinating (thinks there are bugs crawling on her bed, thinks she's all alone/hungry, etc), grumpy/angry and even aggressive (cursed at the nurse and refused to allow blood to be taken for a test the doctor ordered), and extremely maudlin (long monologues detailing/repeating unhappy scenes from her unhappy marriage).

Yesterday was the first day back for Mum's regular doctor who told my sister that there would be no more chemotherapy as Mum isn't strong enough to continue - ever, at this point. The doctor also said that Mum will probably be discharged from hospital in another 4 or 5 days, but that she will not be strong enough/well enough to return home. Even if she could go home, it is clear her condition will deteriorate, and anyway her dp couldn't/shouldn't be expected to provide care for someone in a serious/worsening medical condition.

So, we have been advised that hospital staff/social workers will help us locate a facility for Mum to go to........where she'll be given the medical care she needs until she dies.

My basic questions are these:

1. What do we look for in a facility (presume we're looking for a nursing home?)? We'll be given a list of places that have space available, and will probably spend a day later this week visiting/looking. What are specific questions to ask, or what should we look for in a 'good' facility? (Hollywood horror images of grubby facilities with cruel staff fill my brain, atm)

1. What do we say to Mum? She is forcefully demanding to go home, so it is clear she is unaware of her condition/future prospects. She's been in serious condition in hospital quite a few times before, and has always managed a miraculous recovery/return to her old routine. But that doesn't look likely this time. As far as I'm aware, she has never spoken to my sisters about 'what if' this scenario were to occur (we're not very close, so it is not the sort of conversation she would have had with me).

1. Any general thoughts/advice from anyone who has been through this? Things you're glad you did/things you wish you'd known and/or thought of? Any helpful books?

Final relevant info: we're not in the UK, and I'm 4 hours drive away from Mum and sisters, but as the 'practical' one of the family will probably be sorting some/most of this out long distance and via visits. Later today, I plan to call a palliative care center to find out more. I have also been advised that there are no 'live in' hospices available in the city where Mum lives. And then of course - apart from what we'd 'like', and what seems 'right' - there is the issue of expense, and how it will be paid for (unclear about what, if anything, insurance will cover).

I really don't know where to begin, but of course want to ensure Mum is well taken care of. Don't want to be accused of (or feel guilty about) 'shoving her into a nursing home', but am unsure of what else (if anything) is practical/possible........thanks for reading and any practical/emotional advice much appreciated.

Earlybird - I am so sorry to hear this - this is my experience

1. My best mate died in a hospice - perhaps this is where you need to look. They are caring environments - amazing and calm. They are certainly not a place one is shoved, - they are geared towards caring for people who are dying. They are also really reassuring for the family and relatives.

1. I cannot answer this - will she want to know? My best mate knew she was going to die and she wanted to see everyone before she died. Infact she asked a chosen few to stay with her night and day - (we slept on a chair beside her bed) and did it in a rota. These late night times were precious and often the most honest.

1. tell her you love her, talk to her about things, anything, hold her hand, don't be scared of her - bring her things she loves, smells, flowers, but most of all yourself as often as possible.

I went through similar with my dad - and as I have matron in 2 nursing homes I can offer this advice:
Do not alert staff at the home you are planning to visit in advance - drop in unannounced preferably at a mealtime.Have a look at the quality of food and take note if any frail people are sitting with a meal in front of them and not recieving assistance.
Also drop in about 7pm and see if residents are already in bed - a lot of homes put them to bed far to early and they are there till the next morning.
In the uk you can log on to Care Commision website and recieve the reports from that home - which includes any complaints against them - you have a right to ask for latest reports so do so .
As for your mum demanding to go home - a lot of debate over honesty etc - don't agree with that at all - tell her what you think will make her happy eg - she needs to be in this facilty while they sort her medication out/you upgrade her house/she puts some weight on - etc.
The one thing i wish i had done for my dad was install a private phone line in his room so that he could contact us personally at any time - nurses ( with good intentions) wouldn't let him phone us in the night!
Good luck and best wishes - but just bear in mind death always always brings feelings of guilt - no matter how much you do - you will do your best and she is lucky to have you.X

hospice

Marie Curie

The single most important thing to look for in a facility for your mother is A DECENT RATIO OF NURSES/CARERS TO PATIENTS. Your mother may have the best nurses in the world but if they have too many other patients at the same time she will get bad care and they will seem cruel.

Many nursing homes/long term care facilities try to get away with as few nurses to patients as possible as the nurse will get the blame when patients get bad care. That is why I would try and avoid general nursing homes. The people who run those places give 50 patients to one nurse and a couple of care assistants and line their pockets. I've shopped a few of them to the state in my day. But there are good facilities out there!

Is there a hospice near you that would take her? Those are usually the best places... usually well staffed and they know exactly what they are doing when in comes to looking after patients like your mother. The symptoms you are describing in regards to your mum are very very normal for someone with her diagnosis/ prognosis.

If you were in the UK I would suggest a referrel to the macmillian nurses but it is hard to say outside of the UK. The hospitals I worked at in the US all had palliative care teams and hospice programs. Try to look into that. Hopefully the social worker will be of some help. Sometimes the visiting nurses associations have units for patients like your mom.

I am so sorry you are going through this. I'll be sending my best wishes and positive vibes that she gets the best care possible.

these are the hospices my friend died in Just so you can see the type of thing you might be looking for

she didn't die in all of them - obviously

Ah - thanks so much for your kind and compassionate thoughts, and for the valuable practical suggestions. Without the benefit of experience, it's so hard to formulate a strategy for how we move forward in this complicated/emotionally charged situation. Will check out the various links.

I've just had a heart-to-heart phone conversation with a sobbing sister (the one who is heading to hospital today), and a long cuddle with dd who is distressed that there are so many serious conversations going on about her granny.

Have left a message for the palliative care clinic director (their website gives a list of doctors with impressive credentials, and shows a new facility with room for 12 live in patients). I wonder about criteria for admittance - it couldn't be as easy as putting a name on a list, could it?

Concerning money, your Mum should be getting all sorts of disability benefits, and the Social worker should advise on these if she doesn't ask!. Even if your Mum has a bit of money put aside don't assume that she isn't entitled to some if not all of her care paid for with benefits.

Thanks for that tip discoverlife. Guess I assumed benefits would kick in once her own resources are exhausted, but worth asking what she may be eligible for now and later.

Earlybird I am sorry your mum has reached this stage.

I also had a close friend who died in a hospice (in London) and found the hospice to be a cheerful, peaceful and pleasant place. My friend had the best of care. He died in peace with his sister, myself and another friend with him, we were given the courtesy of a phone call while there was still time.

I always liked that he could see trees and a blue sky outside his window rather than just other buildings, I think it makes a big difference.

Earlybird - where are you? and where is your MUM?

Hi Beetroot - we're all in America, though I'm 200 miles away from her. We moved back here 6 months ago.

oh i see - well not much help to you sadly.

Good luck I do hope you can have some special time with her

Just as an additional thing - the way she is acting at the moment could be due to the calcium levels and as they normalise she may well start to be more lucid and easier to talk to about various issues.

Best wishes. A very difficult situation which I could give you lots of details of what would happen here - but I have no idea what happens in the States. Sorry.

Thanks for the thoughts. Calcium levels are now normal, so that can't be blamed for her behaviour. They've also done an MRI to check that cancer hasn't spread to brain, and that is all clear too - thankfully.

No idea about her mood now - seems yesterday she was desperate for a cigarette, and also wanted to get home so she could have a stiff drink. She's had a problem with alcohol for decades, and smoking is probably the cause of the cancer. Sadly, the two things she wants to do to comfort herself (drink and smoke) are the looming factors for why she is so ill now.

Waiting to hear from my sisters who are at the hospital atm, while I'm sat here googling facilities.

earlybird, i'm so sorry to hear what you are all going through. Just wanted to say so. I thought you were in wandsworth

xxx

Thanks Sophable. Your words - and the words of others are comforting. Until July of this year, we were sw1'ers, but now in America for the next 18 months at least.

Earlybird - really sorry to hear about your Mum. My Dad went to a palliative care unit (in UK) which was very good - if there is something similar near your Mum, this would be a good starting point. Or could you get (if she is insistent on going home) "Hospice at Home" care?

My Dad also refused to consider the fact that he might die - to the extent that he wouldn't give my Mum the PIN number for the bank card "as I'll be home in a few days and I'll take you shopping then." If someone is in denial, as much as my Dad was, I don't think they take in the messages that they're given. The doctor was very blunt with my father (as he could see that he wasn't taking the messages on board) and he still refused to believe he only had weeks to live.

MrsS - that sounds very difficult, but does sound as if your family found the best possible solution. If your father was so unrealistic/resistant, how was he told that he wasn't going home? How was his frame of mind when he got to the palliative care centre?

Of course, we've got to look into what options are available and decide what we think is suitable. We're all wondering if we would be betraying/letting our Mum down by sending her to a facility rather than bringing her home. Also expect if she is so belligerent that she may lash out with some soul destroying comments.....so we're all dreading telling her, and then the moving/settling in process. It brings into focus how we really are at the end, and that she won't miraculously rally this time as she always has before.

The social worker was back from her holiday yesterday (Wednesday). She is supposed to help us find a place (hospice, nursing home etc) for Mum when the hospital discharges her - which is being discussed for as early as tomorrow!

The social worker gave my sisters a list of places mid afternoon yesterday. We are unwilling to send Mum somewhere we have not seen, so now are scurrying about trying to visit the places on the list. Most frustrating of all - we're told that availability at a hospice/nursing home is no guarantee they'll accept Mum. They want to see medical records first. Seems to me it would have been much more sensible for the social worker to tell us who has room, and who will accept her. We can then go visit those places - instead of wasting time looking at places that might not ultimately be possibilities.

If we haven't made a decision by tomorrow afternoon, we're into another long holiday weekend with 4 days where nothing much can/will happen. Don't know what we'll do if the hospital insist on discharging Mum tomorrow.

so sorry you are facing this, i am in the UK so things will be different for you, do you have a macmillan nurse? or something similar. your mums confusion could be down to the pain relief.
hospice care would probably be a good thing unless she can be looked after at home with a care package.
OJ