Struggling to cope (DM with brain tumour)

[CoodleMoodle]

DM has an inoperable brain tumour and is currently in a care home with a prognosis of 6 weeks to live. It came on so suddenly (in late April) and has been such a terrible shock to all of us. A week before she was admitted to hospital the first time, we were shopping for curtains!

The care home she's in has been nice enough so far, but she hates it. She was very independent beforehand and is now totally reliant on others, and I understand why she's so upset. Before the home she was in hospital for nearly a month. She's only 70 and was absolutely fine beforehand. (She's the youngest resident in the home by 20 years, which she's very upset about as well.)

She can't go home, she can't come and live with me. There's nowhere else for her to go, but she keeps insisting they'll move her to a hospice and give her something to make her go to sleep so she can just slip away peacefully. Obviously this would be the best solution but we've explained so many times that they can't do that, and every time she gets so upset.

She's lost the use of both legs, her right arm and says the left arm is too weak to use as well. She's also got bowel problems (always has done) and is terrified to eat in case it gets worse, so is living on cornflakes and soup (and things like custard) at the moment. She's also losing her eyesight because of the tumour.

I'm an only child and so it all falls on me. I've got a few people who can help and support (including DH), and go in to visit occasionally, but otherwise it's all down to me. She calls me frequently (which I don't mind!) because she's uncomfortable and distressed, but I'm not really sure what to do or say. Nothing seems to help her at all.

She doesn't want to press the call button, and says nobody comes when she does (they do, maybe not immediately), but she doesn't like it when I call the home and ask for someone to see her either! Says they'll get cross if we keep asking, even though everyone keeps reassuring her that they won't. She said one of the nurses shouted at her, but then changed her mind and said they didn't, so it's hard to know what to believe. She's always been a bit paranoid but it's through the roof now.

I'm trying to juggle supporting DM and giving my DC some semblance of a summer holiday, but it's so so hard and I feel like I'm drowning. DM, if she was her usual self, would want me to focus on them, but I can't just leave her. And yet I feel guilty that I can't take the kids out for the day in case she needs me to come. The DC know that she's very poorly and won't be going home or getting better, but we haven't told them how long she has left, yet.

Has anyone been through similar? Sorry if it's a bit of a jumble, my brain is fried.

Does anyone have any experience of a relative saying they're being treated badly in a care home like this?

I just went to see DM and she was very upset, saying that all of the staff are horrible and they don't help her, they pretend to be nice but they're not, etc. I really and truly don't want to disbelieve her but... I genuinely find it hard to believe every single member of staff is awful. She says they fish for information and act all sweet until they get it, then go back to being rude.

She said a nurse came in and started asking questions about various people who have been in to visit, finished by asking who had POA (me but not yet) and then just walked away. I'd gone home by then so didn't see this happen.

If she really is being mistreated then obviously I need to know, but I don't know how. She's absolutely terrified of me talking to them about anything, says they'll get angry and treat her worse if I do. She wants me to be there all the time (or for someone else to be) but that's impossible.

I really don't know what to do, here. DM has always, always seen the worst in people but this is a very different situation and I'm really stuck.

@RappersNeedChapstick
I have stepped outside for them to do any and all personal care, including turning/movjng but she's so scared about asking now that it makes her cry.

She's so so so afraid that they're going to get angry with her, and I can't prove whether they are or not because they're always lovely when I'm there.

I understand why you’re feeling worried I’d be the same, on the one hand she’s always been a bit paranoid or it could be something to do with her illness ,on the other it would be awful if they actually aren’t being nice to her. Though as you say it’s hard to believe that every single person is horrible I suppose. Are there any other people visiting their family that you could pass the time of day with and casually / discreetly get their take on the home maybe? Have you checked any reviews on the internet ?

I'm a bit shocked that she's not getting any direct support from the palliative care team.
I have worked briefly in a pct and rate them very highly. This kind of distress sounds like the kind of thing they tackle every day. I think you said she is known to them, could you ring the team and ask if they can review, or at least ask the nursing home team or the GP to refer her back to them? I think the pct need to know what she is saying to you, as it sounds as if she is only expressing negative feelings when you are there.

I insisted on staying during personal care, but that might upset your mum more. Are you sure the personal care is up to scratch? I had to insist they used drapoline on nether regions.

It sounds to me like she needs to be in a hospice rather than a carehome. I'm not sure how you push for this but I would definitely ask the Palliative Care Team. You could look up and see if there are any local to you.

The one about what to believe when she talks about mistreatment is so hard. Does she have a social worker that you could talk to? We had this with Mum who said someone had hit her. She had had a stroke and was very confused. I reported this to the nurse in charge and her social worker and it was all taken very seriously, including involvement by the police but ultimately there was no way of taking it further as she didn't know who it was and couldn't even say if it was a male or female carer or whether it had been that day or previously. Since her stroke she does react very 'dramatically' to things like me brushing against her or going over a bump with her wheelchair so I suspect that something has happened that she has interpreted as being hit. And if someone did then the level of response hopefully will prevent a repetition. You could put a small camera in her room either with or without permission from the home.

My MIL passed from an aggressive brain tumour and complications. We found as it progressed, it led to some personality and perception changes. I am not saying that the care home staff are definitely not behaving how she has described, however illnesses like this - plus feeling vulnerable - can change how people see the world and those around them, as well as impacting on memory.

The other thing to consider is that the staff are used to caring for dementia patients, and not necessarily used to having meaningful ‘back and forward’ conversations or having to explain and justify themselves. They may well come across as patronising or dismissive in your DM’s eyes, as they are used to adopting a certain way of communicating throughout the day and not always remembering your Mum has awareness and understanding? This isn’t a criticism of staff, just an observation of how my very ‘with it’ Nan really took against certain carers and hospital staff as she felt they treated her like a child.

It does sound like a hospice would be more suited to her needs. There is a big difference between the end of life care (and training) that care and nursing homes can offer, and that provided in a hospice. A hospice has everything in house, with a different environment for patients and visitors, and far less stretched and busy staff. I would push for this. If your Mum does have capacity (and I appreciate this can vary), she and you could also argue they are not meeting her needs?

I hope that you are able to find some time for you, to relax, in the midst of the chaos 💐

Thank you to everyone who has replied recently, and apologies for not responding sooner. Things have gone from bad to worse and I'm just in absolute disbelief over everything. (This is now completely outing to anyone who knows the situation IRL but I don't really care.)

I went in to see her with my friend and our DC on Monday, and she was refusing to speak, eat, drink, take her medication or let them do any sort of personal care. She repeatedly told me and my friend that she wanted to die and she was going to do it that day, with or without the end of life medication. After a little while she asked to see the DC, who we'd left in the corridor as we didn't think they should see her like that, and that perked her up enormously. We left her feeling fairly happy that she was doing a bit better than when we first went in. The only issue was that she told my DD (10) that she was going to miss her when she was gone, and DD got very very upset, which DM felt guilty about.

Then on Monday night I got a phonecall from a nurse at the home, saying that DM had tried to strangle herself with her phone charger. They obviously took it away from her, along with anything else they thought she might be able to use, including the control for adjusting the bed. She's now completely dependent on the staff to do absolutely everything. They've also placed a member of staff (sometimes from an outside agency) to sit in the room and watch her 24hrs a day, unless one of us is visiting. She absolutely detests this, which I can understand, but we've all explained it's for her own safety. The mental health crisis team are supposed to be getting involved, and I know the hospice nurse has spoken to her again, along with the GP.

On Tuesday I didn't go in to see her (my lovely MIL was there most of the day), but she called me in the evening and was absolutely furious about being "treated like a criminal" after what happened. It wasn't a nice conversation but she sounded vaguely "normal" - not slurring her words, making sense, understanding everything I was saying to her. She was cross with me because she thinks I don't believe anything she says, but that's fairly standard for DM so it was almost a typical conversation!

Then today one of the nurses told me that they've requested she be moved to another care home as they cannot meet her needs. They've given her old borough (she was moved over an hour away to be closer to me so I could visit more often) three days to find another placement, which they admitted wasn't very much time at all, and it might take longer. I was given the number for the placement officer who originally dealt with the case and was the one who found the home in the first place, and he said he's not sure if they're actually allowed to deny her care as it's being paid for by the state (or something along those lines). He's going to look into it and get back to me/them ASAP.

I'm simultaneously feeling sorry for the home as they have had to deal with all of this (especially the nurse who found her), and furious with them for letting it happen in the first place. AND guilty because I'm the one who bought her an extra long charger as she was struggling to use her normal one from her position (I'm fully aware I needn't feel guilty, there's no way I could've predicted this!). The placement officer said the home should've been more aware of her previous mental health problems, and that she was clearly in a state of distress about both her health and the fact that she feels scared in the home.

She's now petrified she'll end up in a psychiatric unit of some kind, which may be the case... Her MIL spent her last days in one and when DM went to visit she said it was absolutely awful, and wouldn't let me go in to see her because it would be too distressing (and I was 23 at the time). I said I can't tell her either way, we just have to wait and see. She keeps apologising and saying she's made things worse, which she has but she was quite cleary desperate and not in a stable frame of mind at all. I don't blame her for what she did even though it's tremendously upsetting.

She spends most of the day asleep/groggy now, then wakes up a bit more in the afternoon. I went in last night and we actually managed to have a conversation that wasn't all doom and gloom, which was so nice in one way, and so sad in another. Then we went in this morning and she was either asleep or upset about this new situation, which was really tough to deal with.

Sorry this is so long, I needed to get all of that out before I went crazy! It feels like, it can't possibly get any worse... oh look, it has!

Could the placement officer find a hospice maybe? I know there’s the MH side of things but it’s quite understandable that she’s got MH problems under the circumstances, Î’m sure lots of people do and it wouldn’t be new to a hospice? Best wishes to your mum and you and sending you strength

@CoodleMoodle my God I'm so sorry. There must surely be a case now for hospice care? Quite clearly her distress is not under any kind of control and the home are not able to meet her needs at all. I really hope they talk to the palliative care team. And they could help you too.

@Frites @PermanentTemporary

Thanks both. The hospice nurse spoke to her on Tuesday in the aftermath, but I wasn't there so not quite sure what was said, yet. I didn't get much from DM when I asked.

I think it's just down to there not being enough beds anywhere near us (or anywhere at all, really). I know there's only 12 beds available in the one nearest me, and they're the ones who we've been speaking to. I'd like to think her care needs are specific enough, by now! But, as I understand it, because she's receiving full care in the home, plus now has the 24hr staff member, that might be enough for the hospice not to see her as a priority case, as it were. But perhaps now the home want her to move as well, she might get bumped up the list.

I'll have to wait until tomorrow and see if the home/placement officer gets in touch to say what's happening next.

Had a call from the home today. They're not going to move her, thank goodness.

I also spoke to the mental health doctor and nurse, they've made the decision (with DM) to start her on the palliative care medication from tonight, mostly because she's declining to eat, drink and take her meds. They told us to come in and say goodbye today as after this she won't really be conscious anymore, and it could happen quite soon.

I want to take the DC in to see her today (she asked to say goodbye to them) but I'm so worried it'll traumatise them, knowing it'll be the last time they speak to her, or even see her. I'm mostly concerned DD10 but also DS6. I don't know whether to frame it as a normal visit or tell them the truth... DD knows Nanny is going to die, and DS is aware she isn't going to get better. I think I should be honest with them both, it doesn't feel right to lie.

In one way I'm relieved because she's finally getting what she wanted and she won't really be aware anymore... but at the same time I'm absolutely devastated.

Can anyone who's been through this stage tell me what to expect?

I'm so sorry that you're having to deal with all of this. In terms of the children, I wonder if Whinston's Wish might have some useful advice? For example, if there comes a point over the next few days where she is peaceful, query whether it is helpful for them to see her then as well so that the can feel that sense of peace and gain some understanding from that?

Thank you. I did look into WW when DM was first given the prognosis, but I was too upset to read about it then. I'll have another look at the website later on and see if there's any advice there.

I've just told them the truth and what to expect today and over the next little while - DD is beside herself and DS is very upset, although I'm not sure how much he understands. Probably more than I think he does.

They both adore DM, we spent so much time with her, stayed with her in the half terms and holidays, she went everywhere big with us (theme parks, beach, etc). But I do feel that they lost their Nanny back in May when this all started, just like I lost my DM. She hasn't been herself for so long, now.

Can anyone who's been through this stage tell me what to expect?

DF didn't have a Brain Tumour, he had a different Cancer. He died within 5 days of being in the Hospice, about a week after being on Morphine.

I ours say though that it's all quite individual. He had some times when he was awake but hallucinating. Some times when he was a little distressed and other times when he was actually quite lucid in using teatime on the second day when he sat up in bed and asked for some Jelly.

My DA died in the sane Hospice shortly after and she just drifted away peacefully.

If you can I'd spend some time with her, just hold her hand, talk to her and let her know how much you loved her

No cancer but my Mum died last year. Once she was given midazolam she didn’t talk anymore but when I told her I was going to wet her lips (mouth care stick thing) she did open her mouth so she could hear.

@PolaroidPrincess @Snacksgalore

Thanks both. She had her first injection last night, along with her last oral sleeping tablets. She fought it and fought it (she told me she was fighting it!) and then eventually dropped off.

She apparently woke a couple of times and was upset that she was awake, as she thought she wouldn't be anymore. I think she's still convinced it was euthanasia.

I'm going in to see her in a bit, hoping she'll be peaceful for now.

It does sound as though she thinks she's being euthanatised. I'm so sorry, that must be very difficult. As far as I know the drugs won't end her life any earlier but they should make her more comfortable.

Sending a huge hug and sine support your way

@PolaroidPrincess

Thank you. She's been refusing to eat or drink over the last few days, or take any meds except for her sleeping tablets, so they did say it might not be too long. Yet at the same time they just can't predict anything obviously.

If she's not drinking have they given you those mouth moistener things? I forget what they're called but they do seem to make them more comfortable.

When my DGM was dying I used to apply handcream and lip balm for her too. She seemed to appreciate the gentle rubbing of her hands

My mum also had a brain tumour, but with widespread cancer too. She lost speech quite quickly which terrified and infuriated her, it was very hard to cope with. Once she stopped eating and drinking, it was about 5 days I think, longer than I thought it would take anyway. The end was a mixed feeling, she couldn't have carried on much longer, but I didn't want her to go for completely selfish reasons, plus she was also young. I hope she gets the right pain relief to be peaceful in her final days.

Sending you best wishes and a handhold. I hope she’s peaceful when you visit her later.

What a complex mix of emotions you must be working with OP. I hope your DM has slipped into a peaceful sleep, and her remaining time is without pain and frustration.

Thank you all, sorry for not replying individually.

I'm with DM now, she's apparently been a lot more peaceful today so the medication must be working. Every so often she wakes up and looks around very confused, but she was squeezing my hand earlier and when I gave her a cuddle she tried to hug me back and stroked my hair.

I've been holding it together fairly well but I have to say that broke me. It was the moment it all sunk in for real, I think. I'm just glad she isn't properly aware of anything that's going on because seeing me cry would've really upset her.

She called me last night (the carer did it for her) and was furious that she kept waking up. She can't talk anymore and I've just realised that was probably our last conversation. God, this is so shit.