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Struggling to cope (DM with brain tumour)

83 replies

CoodleMoodle · 05/08/2024 19:30

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.

OP posts:
Original poster
CoodleMoodle · 15/08/2024 21:18

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!

OP posts:
AlwaysWashingTeatowels · 10/08/2024 22:24

CoodleMoodle · 10/08/2024 18:47

@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.

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 💐

helpfulperson · 10/08/2024 22:07

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.

Mum2jenny · 10/08/2024 21:54

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.

PermanentTemporary · 10/08/2024 21:47

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.

Frites · 10/08/2024 19:53

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 ?

Original poster
CoodleMoodle · 10/08/2024 18:47

@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.

OP posts:
Original poster
CoodleMoodle · 10/08/2024 18:44

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.

OP posts:
RappersNeedChapstick · 10/08/2024 08:38

I think it sounds as though she may be minimising the pain that she's in. I had this with my DF, until he couldn't hide it any longer.

I would talk to the Nursing Home Manager about the possibility of introducing some more pain relief. You want her as comfortable as possible.

I'd also leave the room when they come to turn her. You really don't want her having bed sores. You may need to be gently assertive, and she may not like it but it takes around 10 minutes to move them? It's nothing really and you can just wait outside.

cjcghana · 09/08/2024 22:17

Thinking of you xx

Original poster
CoodleMoodle · 09/08/2024 21:20

RappersNeedChapstick · 09/08/2024 21:13

If she's only on Paracetamol I think it's time to talk to the Palliative Care team about what pain relief options are available.

A nurse from the hospice went in on Wednesday and drew up a plan for when the time comes for her to increase her pain medication, so I think the home are ready for that. I did ask her today and yesterday if she was in any pain, but she said not at the moment (apart from the bowel issue, but that's down to discomfort rather than agony, now).

The only other pain she seems to have is in her legs and feet, probably from being in the same position all the time. The nurse I spoke to today said that they're arranging for the physiotherapist to have regular visits with her to deal with that, so hopefully everything is on the right track there too.

They're supposed to be adjusting her position every hour during the day, but sometimes she turns them away if she's currently okay with how she's laying. Or because we're there and she doesn't want to cut into our visit, because it can take awhile to sort her out.

OP posts:
RappersNeedChapstick · 09/08/2024 21:13

If she's only on Paracetamol I think it's time to talk to the Palliative Care team about what pain relief options are available.

Original poster
CoodleMoodle · 09/08/2024 21:05

@RappersNeedChapstick
Well, she's suffering with discomfort from an impacted bowel, but all of that is being managed with suppositories and fairly regular toileting (although possibly not enough, if we're honest). Other than that, I don't think she's in too much pain at the moment - they give her paracetamol but she's not on morphine or anything at the moment.

The only reasons she can give me for not wanting to get out of bed (she can't walk so would need help) is that she's scared she'll fall out of the wheelchair, and that she doesn't want them to just park her up somewhere and abandon her for hours and hours. I said we could do it when I was there so I could make sure that didn't happen, even just to get her to a window so she could have a different view, but she doesn't want to make any sort of fuss, because she's scared they'll mistreat her if she does.

OP posts:
Original poster
CoodleMoodle · 09/08/2024 21:01

Things were looking up with her anxieties, especially as her bowel issues have improved massively, and she was even quite cheerful over the last few days. She's had a lot of visitors this week, but when I went in to see her tonight she was back to being upset and telling me how much she hates it there, how most of the staff are horrible to her... I've seen no evidence of this but I obviously I have no idea what they're like when nobody's there.

DM has always been a bit paranoid about other people, thinking they're speaking rudely to her when they're not, but without seeing it for myself it's very, very hard to judge. I don't want to disbelieve what she's saying to me, but I know she's quite sensitive and easily offended, and that's probably only going to get worse as she progesses. She's terrified that if I get involved (not to complain, just to find out what's going on), they'll start treating her badly.

I think she feels even worse because she's so much younger than everyone else, and has a lot more capacity than the vast majority. It's not like she can sit in the lounge and have a chat with any of the other residents, for example.

I'm trying to sort out Power of Attorney as well, but need our chosen witness to get into the home at the same time as me so we can sign the forms. I've got to write a cover letter explaining we can't wait the 20weeks, which is yet another thing on my to-do list!

OP posts:
RappersNeedChapstick · 09/08/2024 20:58

CoodleMoodle · 09/08/2024 20:56

@helpfulperson
The home has dedicated wellbeing staff who go around chatting to residents, doing arts & crafts, baking, watching videos of things they like... But DM will not engage at all. And I understand that, it all feels a bit "forced fun", but then she's upset that she's lonely and bored when we're not visiting.

I'd love for her to go to a day centre, but the idea of her agreeing to it right now... She won't even let them put her in a wheelchair so I can take her out to the home's garden. Again, I understand that she's worried, but it's very frustrating all the same.

Thank you, though, I appreciate the thought.

I can imagine that it's very frustrating. My first thought is could she be worried about pain? Have you had a discussion with her about pain relief and do you think that what she'a receiving is enough?

Original poster
CoodleMoodle · 09/08/2024 20:56

@helpfulperson
The home has dedicated wellbeing staff who go around chatting to residents, doing arts & crafts, baking, watching videos of things they like... But DM will not engage at all. And I understand that, it all feels a bit "forced fun", but then she's upset that she's lonely and bored when we're not visiting.

I'd love for her to go to a day centre, but the idea of her agreeing to it right now... She won't even let them put her in a wheelchair so I can take her out to the home's garden. Again, I understand that she's worried, but it's very frustrating all the same.

Thank you, though, I appreciate the thought.

OP posts:
helpfulperson · 07/08/2024 07:49

Do you think she would cope with a day centre? I've known a couple of people who have been taken from care homes a couple of times a week to a local day centre. These tend to have people who are younger and more able, they often have more in the way of activities going on which she might enjoy and would give her a change of scene.

RappersNeedChapstick · 07/08/2024 06:47

I just don't want her to be on her own too much, that's the main issue I think.

I can totally understand that feeling Flowers

Original poster
CoodleMoodle · 06/08/2024 21:43

@507am
Thank you. I'm so sorry to hear you went through similar. It's such a cruel thing for everyone.

Sometimes I wish I could have her at home, but I know that just wouldn't work. I couldn't offer her the level of care she needs, it wouldn't be feasible.

DM would never forgive me if I didn't give the kids a Summer, she's already told me that! So we've been doing things when we can, but they've also had to come with me to the care home a lot. There'll be a time where they can't come anymore, when it wouldn't be right for them to see her, but for now she's still okay for them to see her. Getting the balance right is tough, but we're trying to make it work. We went to the woods today and tomorrow we're going swimming, fitting around visits to see her. That seems to be the best thing at the moment. She had visitors all day today (other relatives) so I didn't feel so guilty. I just don't want her to be on her own too much, that's the main issue I think.

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Original poster
CoodleMoodle · 06/08/2024 21:38

@Timeforabiscuit
I'm so sorry, how heartbreaking for you all. I hope he is as comfortable as he can be, and you're getting the support you need 🌹

I hope to be there tomorrow when the hospice nurses go in, or one of our relatives will be, so we can get as much information as possible. DM doesn't always take it all in these days.

And I'm trying not to be a "fixer", but it's so difficult when she's sobbing down the phone that nobody is coming to help her. All I can do is offer her reassurance and try to get them to do the same. From what I've seen so far, the care home staff really are trying their best, but she doesn't see it that way. Which I totally understand of course, it must be so scary.

I wish you and your DH peace and love during this horrendous time.

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507am · 06/08/2024 17:02

I'm so sorry you're going through this. And your mum still so young - that's very tough.

My mum lived with us to receive palliative care when my eldest was a preschooler and it was really hard. I remember so well that feeling of being torn in two, everybody needing me but only being one physical human being.

My advice would be to not put pressure on yourself to give your kids a summer. Arrange play dates, summer clubs etc and just focus on your Mum. When there are only weeks or months remaining my feeling was that we only get one death and that I never ever wanted to regret not supporting my Mum as much as I could. I look back now and miss my Mum so much and feel so desperately sad sometimes that she's gone. But I'm also so so glad and relieved that I did my best for her.

Sending hugs.

Frites · 06/08/2024 16:53

CoodleMoodle · 06/08/2024 16:43

@Frites I'm hoping I can be there at the same time as the hospice nurses so I can ask some questions myself. And try to get the full picture, which I don't often from DM as she forgets things, now.

Yes I would if you can and / or maybe see if there’s some way of you getting in touch with them over the next few weeks if needs be.

Timeforabiscuit · 06/08/2024 16:52

My DH has pretty identical symptoms with his brain tumour, and it's very, very hard!

Definitely get the hospice nurses involved, they have been excellent.

Regarding the not sure if you're getting the whole story, you may not need to "fix" anything your DM just needs to be listened to and understood (even if privately you don't necessarily agree). Remembering to just listen is really hard when you're on high alert to do and fix stuff, but it's the most important bit. Alot of the anxiety and anger can be driven by being "done to" and out of control, it's a deeply unfair disease as the comprehension can be fine, but the communication terrible 😞.

Original poster
CoodleMoodle · 06/08/2024 16:44

@Musicaltheatremum

Thank you, I'm so sorry you lost your Mum as well. It's awful.

I will look into Maggie's, thank you. And I will get back in touch with the palliative care team and see if they can help, too.

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Original poster
CoodleMoodle · 06/08/2024 16:43

@Frites I'm hoping I can be there at the same time as the hospice nurses so I can ask some questions myself. And try to get the full picture, which I don't often from DM as she forgets things, now.

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