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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:
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:
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

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:
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

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:
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

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:
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.

CoodleMoodle · 19/08/2024 19:18

@MeYouAndAQuestion This made me very emotional... Thank you ❤️ I'm trying my best and some days I don't think it's enough. Like this week: I can only go during the evenings as DH is working and I've got the DC by myself and can't take them with me anymore. I feel awful about it but I know she'd understand and she isn't really aware if I'm there or not... but I still feel bad!

I talk to myself all the time, maybe it's time for some pep talks too!

OP posts:
CoodleMoodle · 24/08/2024 22:42

Just a quick update.

DM has been sleeping most of the time since Sunday, so nearly a week now. I can only go in to see her in the evenings because of the DC and I've just been sitting and chatting with her. The nurses have said they now only give the injection if she wakes up because it means she's in distress or pain, and that's happened a couple of times when I've been there. While we've been waiting for them to come and give her the meds she's been holding my hand and squeezing it a bit, which is nice (although I wish she wasn't awake, in a way). The hospice nurse said they might set up a syringe driver for her soon.

I couldn't go in today as we're on a deadline to sort her house (it's rented and we've got house clearance people coming next week), and I feel awful about it. I might not get in tomorrow either due to the same reason but will definitely go Monday. Trying so hard not to feel bad but her house is absolutely jam packed with stuff and it's going to take forever to sort. She'd understand, I think. Maybe! She's very precious about her things but we're trying to be respectful with them. I couldn't just chuck it all in a skip, I'd never forgive myself.

I'm both praying she slips away peacefully soon, and that she just holds on a few more days...

OP posts:
MereDintofPandiculation · 25/08/2024 09:44

This reply has been withdrawn

This message has been withdrawn at the poster's request

MereDintofPandiculation · 25/08/2024 09:55

Sorry, OP, I had to seen your update when I posted this.
Flowers

Bemusedandconfusedagain · 25/08/2024 21:05

I hope your mother has been comfortable OP and that the sorting is going well. A very strange limbo for you all. Thinking of you.

CoodleMoodle · 25/08/2024 22:36

@Bemusedandconfusedagain @MereDintofPandiculation

Thank you both. House clearing is a slow process it would seem, although we've made some progress over the weekend.

Feeling guilty I haven't been in to see Mum but I phoned the care home and they said she's just been very sleepy over the weekend. Will go in to see her tomorrow on my way home.

OP posts:
MereDintofPandiculation · 26/08/2024 09:26

CoodleMoodle · 25/08/2024 22:36

@Bemusedandconfusedagain @MereDintofPandiculation

Thank you both. House clearing is a slow process it would seem, although we've made some progress over the weekend.

Feeling guilty I haven't been in to see Mum but I phoned the care home and they said she's just been very sleepy over the weekend. Will go in to see her tomorrow on my way home.

You could put some of her house stuff into storage to go through at your leisure.

re: “last conversation” - initially it will be these last weeks which are uppermost in your mind, but with time earlier, happier memories will break through. I lost my mum at 61, and now barely think of her last days, or her years of disability, I remember her as I was growing up, as the capable intellectually curious woman she was.

CoodleMoodle · 31/08/2024 16:57

Had a call from the home at 3:20 to say DM's breathing had changed and to come ASAP, but by the time I got here (20min drive) she was gone. Peaceful and with staff around her. I'm sorry that I wasn't there like she wanted me to be, but I'm glad when I saw her last night she was asleep and not in distress.

I don't feel too sad, right now. I was sadder when we found out the news and when they started the end of life meds. I guess that in a way I've already mourned her - I feel like I lost my Mum awhile ago. To think she originally just went to the GP because she felt a bit wobbly, to this 14 weeks later... It's been so intense and fast, but feels like forever at the same time.

I think I did my very best for her, like she always did for me.

Thank you everyone for your advice and kindness.

OP posts:
Musicaltheatremum · 31/08/2024 17:11

@CoodleMoodle so sorry for your loss. Your description of your mum being a bit wobbly to her dying only being 14 weeks resonates with my mum's situation so closely. The last 3 months were so hard and yes I did feel relief when she finally died.

Just be kind to yourself. You've had a terrible loss and my mum's death as a previously fit 86 year old hit me harder than my husband's death aged 50..also to a brain tumour...as he had been ill for years.

Shedding a wee tear for you just now.

Princessfluffy · 31/08/2024 18:11

The people I have known with brain cancer only lived a few weeks after diagnosis so it may be that your mother has very limited time left. If don't know your financial situation but having a 24 hour live in carer is often actually cheaper than care home fees and may be a different option if you have not already considered it.

Princessfluffy · 31/08/2024 18:12

Sorry OP I missed your update
Flowers

Bemusedandconfusedagain · 31/08/2024 18:12

I'm so sorry that you are going through this. It is a strange time I think when a loved one dies in these sort of circumstances. Grief mingled with relief, which can sometimes leave us feeling guilty for the relief. But you absolutely did your best for your DM. You have nothing to feel guilty about and she is no longer suffering.

Please look after yourself and be kind to yourself. I'm absolutely sure from what you have posted that that is what your mum would want.

cjcghana · 31/08/2024 20:46

Sincere condolences OP. May your mum fly with the angels xx

MultiplaLight · 31/08/2024 20:53

Sending love to you and your family, you sound a wonderful daughter 💐

DingDongDell70 · 31/08/2024 21:16

💐

tealpassat · 31/08/2024 23:12

Oh I've just read the whole thread, so sorry OP you've done an amazing job advocating for your lovely DM, and you sound so caring.

I hope you can look after yourself, you did the best you could in such hard circumstances.

honeyfox · 31/08/2024 23:28

Condolences OP, you've had a hard road. I'm glad she's at peace now.

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