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.

That sounds so difficult for everyone.

Maybe the GP prescribe some thing to help with her anxiety. Not enough to knock her out as per her wishes, although if I was her I would want the same but just some thing to try and calm her down a bit.

As for the DCs. My mother became ill at the start of August last year and died 7 weeks later. She had been unwell for a ling time
previously. We knew it was the beginning of the end but not that the end would be so close. My oldest was 7 at the time and I wish I had been more honest with her. We didn’t know was at the very end of life until the final 3/4 days and then I was very busy and didn’t tell the DCs in advance. How okd are your children?

I am so sorry it sounds really difficult. I had a close relative in a hospice and they gave her something that they kindly referred to as (if i remember correctly ) a ‘gin and tonic’ medecine. Something that took the edge off as it were. It took the anxiety away ( as pp has suggested) is the care home a nursing home?I wonder if hospice nurses could go and see her ? ( i have no idea if that’s possIble) Have they told you how they handle end of life care? I am so sorry again I hope your mum becomes more peaceful and i wish you strength.

@Snacksgalore
Thank you. I'm so sorry to hear you have been through similar, it's so tough. And yet I find myself wishing she'd just do what she'd like to do and slip away peacefully, which is very strange. Who wants their Mum to die, especially so young?!

My DC are DD10 and DS6. The 10yo is more aware, 6yo not so much. They've been in to see her a few times and know she won't get better. I'm going to have a chat with DD very soon, and then try to think of how to explain it to DS. They know about death in general but this will be their first close relation. They both adore DM and we usually spend all of the school holidays with her, she comes over to ours twice a week, etc. She's the only one I ever trusted to look after them, aside from DH. It's going to be so hard for them, but tbh they lost their Nanny quite awhile ago, if that makes sense. I feel that way, too.

The GP is visiting the home tomorrow, so I might call ahead and ask them if they can give her something to calm her down a bit.

@Frites
Thank you, it really is hard. Not something you ever think you'll have to deal with!

The hospice nurses are going in on Wednesday, so maybe they can suggest something. The care home say they can handle end of life care, it's something they have to do often because of the ages of the residents (most with dementia). But I'll see if there's anything they can offer her to take the edge off and calm her down.

I think DM is just resistant to anybody helping her now, she just wants to die with some dignity.

I'm so sorry about your DM. We had a similar short illness with my DF a few years ago.

Definitely ask the GO about pain relief and anxiety.

Can the Palliative Care Nurses offer your DM any other treatments? Our local Hospice offers things like reflexology.

Is she religious at all? Both my DMIL and DFIL have found having the Minister come on and talk to them quite useful.

I'd also recommend talking to The Brain Tumour Charity

@RappersNeedChapstick
Thank you. Sorry to hear about your DF, it's so hard.

She was under the palliative care team at the hospital, but I'm not sure she is now. The care home is about an hour away from the hospital, as she wanted to be nearer to where I live (I can get to her in 20mins now, as opposed to two hours!). I might ring them and check, perhaps they could give me some advice as well, they were so kind.

She's not religious, or not as far as I know! But I know the home caters for that sort of thing, which is wonderful.

I'll check that out, thank you.

Totally understand her. Hopefully the hospice nurses can help to make things more bearable. They were so wonderful with my relative.

@CoodleMoodle what a horrible thing to be living through for everyone. The palliative care team should help your mum.

I'm also thinking about you...is there a Maggie's centre nearby because you need support too.

I lost my mum 2 years ago to secondaries in her spinal fluid which caused progressive neurological dysfunction (walking/talking/swallowing all affected) she was at my wedding in early may and died late August...it was the most devastating time so I really feel what you are going through...my mum was 86 but very fit and activ. So 70 is too young.

Do look out for yourself. The pain is very hard.

@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.

@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.

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 😞.

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.

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.

@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.

@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.

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

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.

@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?

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!

@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.

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.

Thinking of you xx

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.