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Original poster

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:
MeYouAndAQuestion · 19/08/2024 09:52

This is so sad. Your Mum is so young. It's an absolutely awful thing for her and you to have to deal with. It sounds like you are an amazing daughter. She is very lucky to have you.
You sound like you are doing all that you reasonably can.

When my Dad was dying I used to talk to myself out loud and give myself little pep talks. I used to tell myself I was doing well and that I was Ok. I guess it was a way of dealing with the stress.
I hope things go as smoothly as these things can. Look after yourself.

Original poster
CoodleMoodle · 19/08/2024 08:47

@blitzen Thank you. She's been the best Mum/Nanny you could ask for. She did so much for all of us and I'm only sorry I can't do the same in return.

It's really hit me hard this morning, but I've got to get myself together for the DC.

OP posts:
blitzen · 18/08/2024 23:12

Thinking of you, OP. It sounds like you have a brilliant mam, who is also a lovely Nanny. Losing a parent is just so painful. I hope the next bit of time goes smoothly and peacefully for you both xx

Original poster
CoodleMoodle · 18/08/2024 22:12

@Icanthinkformyselfthanks

DM is now having the end of life medication. My DC have been so good and spent so much time at the care home over the last couple of weeks, and when she still had full capacity she kept telling me to still take them out and about and keep things a little bit normal. I was finding it hard to juggle all of my responsibilities but we found a balance that worked. They've had some fun but we've also spent a lot of time with their Nanny who they adore.

Now that she's near the end I won't be taking the children in to see her again, and will go in when DH can look after them at home.

OP posts:
Icanthinkformyselfthanks · 18/08/2024 21:44

@CoodleMoodle , the summer holiday is nearly over and you will have many opportunities to spend time with your family. Your mother has one chance at a good death. Like it or not you are the only one who can make that happen. The very first thing you need to do is to speak to her GP and be referred to a hospice. Her prognosis is terminal and she has less than six months to live, she should be eligible for NHS CHC. My father under these circumstances was awarded a live in carer as well as a carer each day to relieve the carer and carers 3 times a day to help the live in carer turn him etc. under those conditions your mother may be able to go home. At the end nurses came in to administer his end of life medication. All much kinder to mum and much less for you to worry about. X

Original poster
CoodleMoodle · 18/08/2024 21:34

@harriethoyle Thank you so much and I'm sorry you went through similar.

I'm holding her hand, which is all I can really do for her. Wish I could do more.

It was just the two of us for a long time and I'm so glad I had the 35 years I did have with her.

OP posts:
harriethoyle · 18/08/2024 21:28

@CoodleMoodle sending you love and strength. My DM had a terrible period about 36 hours before she died, but once we got her meds sorted she had a very peaceful and slow decline and just slipped away. Wishing you the same x

Original poster
CoodleMoodle · 18/08/2024 21:24

Timeisnevertimeatall · 17/08/2024 12:52

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. Flowers

This is exactly how I feel about it. I want her to hold on forever but I know that's not fair on her and it would be better if she just slips away. And it feels so weird to think that about someone you love so much.

I'm very sorry to hear you've been through similar and that your Mum was young as well. It really is the worst club to be in Flowers

OP posts:
Original poster
CoodleMoodle · 18/08/2024 21:20

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.

OP posts:
MiddleAgedLurker · 17/08/2024 14:27

This reply has been withdrawn

This has been withdrawn by MNHQ at the OP's request.

SockFluffInTheBath · 17/08/2024 13:54

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.

Frites · 17/08/2024 12:55

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

Timeisnevertimeatall · 17/08/2024 12:52

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. Flowers

PolaroidPrincess · 17/08/2024 12:49

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 Flowers

Original poster
CoodleMoodle · 17/08/2024 12:44

@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.

OP posts:
PolaroidPrincess · 17/08/2024 10:59

CoodleMoodle · 17/08/2024 10:56

@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 Flowers

Original poster
CoodleMoodle · 17/08/2024 10:56

@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.

OP posts:
Snacksgalore · 17/08/2024 10:29

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 · 17/08/2024 09:26

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 Flowers

Original poster
CoodleMoodle · 16/08/2024 14:12

Bemusedandconfusedagain · 16/08/2024 13:03

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.

OP posts:
Bemusedandconfusedagain · 16/08/2024 13:03

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?

Original poster
CoodleMoodle · 16/08/2024 12:43

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?

OP posts:
Original poster
CoodleMoodle · 15/08/2024 21:49

@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.

OP posts:
PermanentTemporary · 15/08/2024 21:32

@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 · 15/08/2024 21:32

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

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