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Elderly parents

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:
Musicaltheatremum · 06/08/2024 09:20

@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 · 05/08/2024 22:15

CoodleMoodle · 05/08/2024 20:28

@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.

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

CoodleMoodle · 05/08/2024 21:35

@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.

OP posts:
RappersNeedChapstick · 05/08/2024 21:00

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 Flowers

CoodleMoodle · 05/08/2024 20:28

@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.

OP posts:
CoodleMoodle · 05/08/2024 20:27

@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.

OP posts:
Frites · 05/08/2024 19:47

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 · 05/08/2024 19:35

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?