Mum’s refusing treatment

Mum has continued to deteriorate rapidly. She drifts in and out of sleep and can’t sit in a chair any longer. She’s also begun to hallucinate. She does have some lucid moments but these are becoming fewer.

Two day’s ago the hospital discharged her, which would have been okay if there had been a suitable care plan in place. Instead, she was dropped off by the Patient Transport bus and carried inside. Her neighbour came round and was devastated by Mum’s condition. Luckily she was still there when Mum cried out in agony and collapsed on her sofa. She had been left with Oramorph and consequently took triple the prescribed dose to try and stop the pain - as we found out later. The local authority carer arrived, took one look at Mum and called 999. I arrived shortly after the paramedics, and after Mum had been given more pain relief she was taken back to hospital as there was no care provision between 9pm and 7am. This has been recorded as a failed discharge and an investigation has been launched. There are no words for how angry we are.

Mum was taken back to the same ward she’d been discharged from that morning but with open visiting in place. I visited her yesterday and she is now completely bed bound and unable to reposition herself. She is being turned regularly by the staff. She is eating and drinking very little and her stomach has begun to swell and she can no longer use her phone.Tomorrow morning Mum will be transferred to a hospice to spend her final days. 

We are completely exhausted from having to fight to get Mum the care she needs and it’s devastating that she had to go through such an awful experience when we had said all along that she was too ill to be sent home without 24 hour care. I’m taking her home comforts to the hospice for her and we can only pray that she gets the peace she deserves.

My God. I am horrified and disgusted. You must be so tired and washed out with all the fighting you have had to do. Thank heavens you have hospice care. 
I can only keep you all in my heart and send you the biggest hug. 
I hope your mums last days are pain free and comfortable. 
Please take care of yourself too, Elbereth. 
Those responsible should be ashamed of themselves. 

Thanks Dani. We are all exhausted but determined too. We know we only have days left with Mum now and her comfort is paramount...but we aren’t going to let the events of this week be forgotten about. 

I’m off to bed now to try and sleep, so I can cope with the move tomorrow and all the emotions it will bring.

El

20th June 2021

Mum’s transfer went smoothly and she has a lovely room looking onto a private garden. Me and my brothers have been going in each day, but have to visit separately due to ongoing Covid restrictions.

Mum was very agitated when I arrived at the hospice today. She’d been given morphine before I got there, but was incredibly restless and kept trying to get out of bed, despite not being able to stand. I tried to calm her down but it didn’t help and the nurses had to administer a sedative - midazolam. This helped a little, as she stopped trying to get up, but she was still writhing on the bed and just couldn’t get herself comfortable at all. It was so upsetting to see, and I felt so helpless. I was going to leave after an hour as I thought maybe my presence was stopping Mum from nodding off, but the staff asked me stay until she drifted off. Another hour later and she finally calmed down. I am completely in awe of the staff at the hospice dealing with people in such dire need every day, and families that nurse their loved ones at home. I could only manage two hours and even that length of time broke my heart. 

Mum continues to lose weight, not that she had much left to lose, and her legs are now mottled which I know is a sign that the end is coming closer. She was dripping with sweat, but her hands were cold. I’m finding that documenting the changes on here is helping me in coming to terms with what’s happening, and I hope it may help someone else in the future. How is it possible for time to pass so slowly but race ahead as well? We want Mum to be at peace, but it’s been such a rapid decline too. I keep having to remind myself it’s only been five and a half weeks since her diagnosis.

Much, much love to you and your brothers and your beloved mum. May peace come swiftly for her. x

Elbereth...I'm sending you a huge healing hug because I really don't know what else to do or what words of comfort I can offer. I hope your mum manages to slip away and have no more episodes of distress. Hospice staff are indeed saints. They do so much good work, don't they. 

When your mum has gone your world will lurch into the unknown, into a void you must fill with looking after yourself once you have sorted the legalities on automatic and please please try not to feel guilt. There was nothing you could have done and from what you have said here your tried to move heaven and earth to smooth the way for your mum.

Hugs

Thank you Dani and Tooter. We know that Mum is in the best place, and are realistic about the amount of help we can give - but sometimes emotions override common sense. My eldest brother has taken the next two weeks off work to try and sort out Mum’s house and find all the necessary paperwork. She has planned her funeral to the smallest detail so that’s one less worry at least, and he finds that being busy helps him to cope. I’m going back to work tomorrow and hoping that will help me too, but will visit Mum every evening. I know I will feel guilty after she’s gone, just as I do now, that there ‘should’ be more I could do, even though I know there isn’t.

My son is 26 and lives 400 miles away. He’s made the brave decision to not come and see his a Grandma before she goes, and I’m supporting him in this as I don’t want his memories of her to be coloured by the way she is now. She wouldn’t recognise him anyway, as she has her favourite photo of him at five years old beside her bed and tells all the nurses about her little grandson.....he’s now 6ft 4’’.

thank you both for your support and kind words - they really do help. x

El

I really didn’t expect to be adding another comment on here today, but sadly Mum passed away an hour and a half ago. The hospice staff were with her at the end - it was 11.33pm and we were all asleep when she went. I’m remarkably calm at the moment, but I’m fully expecting the grief to hit anytime soon in a big wave. We can’t contact our military brother at the moment so have that call to make in the morning. Mum will be taken to the Chapel of Rest but we aren’t able to visit her there. Thankfully though, all three of us were able to see Mum today, and I think she’d hung on for that. She’d been asking for my brother when I was there and he visited early evening. She passed away peacefully five hours later.

We knew her time was running out, but thought she had another day or two. She knew what day it was and who we all were, but just couldn’t settle at all. I am thankful too that she’s at peace now and with her brothers and parents as she said five short weeks ago that that’s where she wanted to be.

El

Elbereth. So sad for you all. I’m glad you seem  to have such a loving family round you.

Please look after yourself. 
Hugs