DM in hospice and I'm crumbling

[SoySaucePls]

DM has had a 2.8 year battle with stage 4 cancer. Now 80.

My DB and I have been lucky enough to have a carer but our lives have been on hold for nearly 3 years. We are both shattered and exhausted from the continual trips in and out of hospital, getting her meds, calling for help, taking over this and that and for caring for all her other co-morbities and she has a lot.

I went to see her today, as I did yesterday and the day before and the day before and she's obviously very much in pain. She cant have conventional pain relief so they're using a 2nd/3rd line of drug choice and it doesn't seem to be working.

Already after 2.8 years of shit this feels like the final horror tragedy to finish me off. The whole experience so gruelling.

I look at end of life care and how she is a fragment of her former self and I just wish it would end now.

I don't wish for her to go but I am so very sad, exhausted, burnt out and beyond everything I don't know what to think anymore.

Tomorrow I am taking a break from hospice as taking my DS to hospital appointment. But in all of that there will be not time to myself to be alone, to process. To take a breath. I had a nice friend go into counselling mode when I told her what was happening. She told me try and find a moment for a "nice cup of tea". WTF?

I feel guilty for all the time i'm not there and she is alone, trying to cope with the pain. Yet I hate visiting and I hate my time there. It's very upsetting.

No one has brushed her teeth since she got there 7 days ago so I helped her do that today and fed her her lunch.

It's such a sad experience to see your DM in such a weakened and painful state.

I hope they have legalised assisted dying when I reach my end as I would not want to go through this or put my kids through this.

She's been so stoical through it all. I want this to be over. Now. I feel like I can't take even one more day. I will miss her immensely. She was my best friend. But this is torture.

I’m so sorry you are going through this. Nothing I can say will make it easier but I am thinking of you and hope you can find strength in the happy memories x

Thank you @Geekylover for your kind words. They made me feel better just to know someone understands. That someone is kind.

I found myself wishing for her to go quickly today, she’s had a mini revival today but then by this evening she was going downhill and I am wracked with guilt for wishing this time away.

She’s even managed to text this evening to ask for some mini sticks of cheddar.

Last night I thought she would never text me again. It’s the ups and downs, the not knowing what’s next or how much longer I can’t seem to cope with.

Even my DB said, “so how long does this stage last” because we are both so exhausted.

I nearly drove into someone’s van today. I feel like I can’t take it anymore. I know it is close and I am so sad the end is close but I can’t seem to function anymore and keep breaking down.

Anyway sorry for droning on. I’ve got no one to talk to really about this in real life. DH on the spectrum and not interested.

No one to put their arms around me and tell me it will be ok. Like my mum used to.

I’ll call cruse tomorrow I think.

I don’t have any advice but just wanted to say you don’t need to feel guilty for wishing for her to be out of pain, it’s the kindest thing.

My grandad passed a few years ago and although we were extremely close and I loved him dearly, I prayed that he would pass quickly. It was awful to see him in so much pain and so confused.

YANBU I think all of your feelings are valid.

Just out of interest, why can't she have conventional pain relief? If she's palliative anyway i'm not sure how conventional pain relief can harm her?

I understand. I had those feelings when DH was dying, I felt selfish yet exhausted by the role I found myself in, do the hospice offer counselling? Anticipatory grief is real and hard. I wish you both peace and your mum a peaceful passing.

OP, please check what support the hospice can give you- counselling etc. They usually support the whole family.
🌺🌺

I am so sorry to hear that you’re going through this. I went through t something similar with my mum in August and I know exactly how you feel. The anticipatory grief was worse than the actuality and those days in the hospital (they gave her hospice care in the hospital) were harrowing and all you want is for it to stop, for everyone’s sake. Being told to look after yourself or take time for yourself is so patronising when you know you can’t. But somehow you find the inner grit to survive it and don’t be afraid to feel the relief that will come. Much love xx

It's just horrible isn't it.
Just know that there are people who understand and know those terrible feelings of guilt and sadness and love and confusion and wanting it to be over then feeling bad because you feel like that.
I totally get it ❤️

I feel every word of this and my experience was much shorter than yours.
Every time dad agreed to another thing that "might" help, I cried and raged internally.

Also wondering what the issue is with pain relief? I had to be quite ...forthright about mouth care and pain relief. The mouth care is so important for comfort.

The pain relief was a problem because, inexplicably, the doctors couldn't accept dad was dying until about 24 hours before he did.

It will be a relief when it comes. Don't spend every minute there - I paid a high price health wise for that.

The staff have absolutely no excuse for not doing daily hygiene basics including teeth cleaning if she wants it. Please ask for her pain to be assessed and her teeth to be cleaned. Oral hygiene is essential and if she wasn’t able to have her teeth cleaned any more she could still have the wee sponge things etc. but as she’s eating and drinking it doesn’t sound like she’s at that stage yet.
You poor bloody thing though- is there anyone else to help out even in small ways? Many people would like to be more help but don’t know what to do… a church member or a chaplain who could give your mum some comfort and time?
Definitely for the palliative team to review her pain relief though and the nursing staff to attend to her basic needs. And don’t be afraid to ask to speak to the charge nurse or beyond.

Big hugs OP. I'm sorry I can't give you a real one and tell you it will be OK. Are you brother close ? You sound as if you are doing all those things for your mum between you.

Dh's uncle died recently and the celebrant said something along the lines of "grief is the price we pay for love" and it's so true. Sometimes all you can do is put one foot in front of the other - and that's ok. I hope you can get some rest tonight and whatever is best for you materialises in the morning xx

And please don't apologise, this board is a great place to vent, cry, whatever when you feel you just can't burden your own family any more with it all

Lots of people understand your emotions. Please don't feel guilty. I wish we were at the stage where these last painful times were prevented. Sending my thoughts.

Oh Op you’re not droning on. It’s bloody awful. There really is nothing anyone can say, other than we’re thinking of you. It’s shit. 💐

Bless you

FIL had major problems with pain relief. Morphine had had nasty but not fatal side effects after previous surgery so they were working through the alternatives that all gave him really bad vomiting or diarrhoea. It's not always a case of just upping the dose.

I’m so sorry you’re going through this, OP. I have so much empathy after caring for my mum up until the end. The trips to the hospital, being on edge every time the phone rang. And having to carry on with life and work through the exhaustion and stress.

it’s incredibly difficult and tiring and everything, I have no sage words because there are none. Except everything you’re feeling is valid. You’re not made of stone and this is a huge thing to deal with. I wish you well.

I saw my dad live through hospice care. It's terrible watching somebody you love go through extreme pain and feeling powerless to relieve their suffering.

You are going through so much, please don't feel guilty for wanting your mum's pain to be over. It sounds relentless and all you want is to have your mum's comforting arms around you, as when you were younger. I get that, my mum is my best friend too.

I hope you can find strength for this final phase, and some peace of mind. Your mum is lucky to have you and your brother, you sound like wonderful, supportive children.

When we gathered around my dad's bed for his final hours, he stopped struggling and was serene. We were able to tell him we loved him and just be there with him. It was a relief that his pain was coming to an end - and that we could instead start to think of him as the person he was and celebrate his life.
Sending you thoughts and best wishes for the days ahead x

If you’re in severe pain, having someone there can seem irrelevant. Don’t feel guilty about any time you’re not there.

Thank you so much for your comforting words. I’ve read every post and it’s helped.

It’s been helpful to have my big range of emotions validated and to know this is normal. I’m really sorry everyone on here has had to go through this. Feels like the toughest thing I’ve ever done.

DM is very sleepy this morning and had a catheter put in as not enough strength now to get to the commode. She’s not happy there and said it’s very noisy which is it.

I asked her if she’d like to go home and she said no, too worried about the pain.

For the pain relief she can’t take any morphine based meds as they make her wretch and vomit. It’s been a problem all the way through her life.

Shes got a weird stomach that has always had difficulty accepting many things. She had a nissenfundoplication in her 50s as her reflux was so bad she was aspirating into her lungs and she was down to 7 stone. Couldn’t keep food down. It’s amazing she got to 80 I guess. Always had a very sensitive tummy but was a real stoic. Never complained. Just got on with things.

so she’s on fentanyl patches and Alfentanil driver though they took that away yesterday as she said it wasn’t helping much.

also pregabalin, very high doses.

Not sure it’s enough. Well it’s not. She’s still in a lot of pain. They don’t seem to be able to get ontop of it and keep saying we’ll review it in another day or two days or even next week for the fentanyl patches. She last had a dose increase a week ago.

I get frustrated with their reluctance to give more.

Yesterday when she said she had bone pain in her spine they put ibuprofen gel on it.

Made me feel like screaming. Finally they gave her an injection of Alfentanil two hours later.

While I’m there I can push for more things. But when I’m not there I can’t and that leaves mr feeling wracked with guilt and horror to think of her suffering.

She looked so sad yesterday. She doesn’t want to go. Not really. We were a close family, me, DB and DM. 50 years together. She just wanted to live to be there for us, to enjoy more good times together. She was still so interested in life and learning new things.

We all live locally and met up all the time.

Thank you for helping me. It’s really nice to write this. Even though it’s so tough. Just to tell someone that it’s painful and how sad I am.

🌺@SoySaucePls Im so sorry- and so glad this thread is helping in however small a way.

That does sound incredibly difficult with your mum being in so much pain. The poor thing, she must feel desperate. So sorry you're going through this - I can imagine it's impossible to switch off and you must be emotionally drained.

Incredibly lucky to have had such a close and loving family life though. I guess the price we pay for that is the pain of parting. I hope that those happy memories will help you get through this terrible time and be a comfort in the future.

I'm so sorry you're experiencing this. It's heart breaking.

I was in exactly this position with my dad last year. I couldn't stand watching him suffer. He also had issues that meant he wasn't on the most effective pain relief.

I spoke to the doctor and told her I couldn't stand my dad being in so much pain. She changed his medication, sedated him and he passed away a day later. While it was incredibly sad to lose him, to have him free of pain after so much suffering was a relief.

Talk to her doctors, tell them how you feel. I am sure they can find alternative medication so she's not in pain for this final stage.

Sending you strength. I hope you have support and love around you.

I'm so sorry you are going through this OP. It's heart breaking. Sending you strength xx

I'm so sorry you and your Mum are going through this. Sending hugs x