Mum’s refusing treatment

Hi elbereth. 
To find out what's available locally, ask your GP. Your GP can arrange for community nurses to come to your mum’s home and provide nursing care there.

can I suggest you contact her doctor before she is discharged

Best wishes 

 I had imagined the team would automatically contact her GP so we’ll definitely do that. Thank you!

No. You need to be proactive to the point of being pushy these days. Get on to it. You will probably find that your GP is really helpful.

So, Mum is still in hospital. She has begun to suffer from memory loss and had a head CT last week that came back clear. She has become incontinent and her urine is very dark. She’s currently back on IV antibiotics as she has a third infection and needs a stent fitted in her bile duct. They tried to do this last week but she couldn’t swallow the camera so she will have a general anaesthetic next week to get this done. I’m very worried that this could be too much for her and that she may not wake up, but I’m holding on to the thought that the hospital wouldn’t put her through this if she wasn’t strong enough.

Mum was administered oral potassium during the night last week, and was told it couldn’t wait till morning- is low potassium caused by the cancers?

My second brother and I have been phoning on the days that our other brother can’t get an appointment to visit, but she can only manage a few minutes before she gets tired and can’t hold the phone any longer.

We’ve also now been told that she has less than 6 months left but to ‘be prepared’ each day as the pancreatic cancer is so aggressive. 

I think the hardest thing now is that Mum seems to have forgotten how ill she is, and keeps saying she’ll be going home ‘tomorrow’, when realistically it looks like she’ll be moving to hospice.

I have to say that the MacMillan team have been fantastic, and are helping us sort out all of the practical and financial matters too.

Oh Elbereth...I'm so sad that your mum's condition has progressed so quickly. I can't say much else apart from I hope you can all support each other through this difficult time and find some peace. Maybe your mum's memory is a blessing in a way

So pleased you are getting some practical help

Best wishes

Thanks Dani. It’s been such a rapid decline that, in a way, it’s probably better for Mum. It’s also brought me and my brothers closer. We all live busy lives and one brother is in the forces, so we only usually meet up once or twice a year. Trying to get our heads around all of this has meant we are in daily contact with each other.

we’ve planned to meet up outside the hospital tomorrow when Mum comes out for five minutes of fresh air. It means she’ll be able to see us, albeit socially distanced, and hopefully it’ll lift her spirits a little.

I am so grateful I found this community as I feel a bit more prepared for the next days and, maybe, weeks.

Many thanks for your reply x

Mum is still with us, but the past 10 days have been more stressful than I could ever have imagined. The day after a Mum agreed to have the stent fitted, the MDT decided it couldn’t go ahead as the risks were too high. Instead, they were going to discharge her to her home following a home assessment to see what equipment and support she would need. We were told there would be a full care package in place which was fully funded under the special rules. Unfortunately, this wasn’t to be. On Sunday evening, my brother was told by the Ward Sister that Mum was being discharged with a choice of no care package or two visits a day to do her meds - no personal care of meal prep included. He told her this was unacceptable as we all work full time and can’t be there constantly and that the home assessment hadn’t been carried out. Mum has used a walker for years due to osteoporosis in her spine and found it difficult enough to get around the home before all of this, so a home assessment was crucial. My brother then took Mum outside for fresh air with her walker, but she wasn’t able to walk back to the ward so he had to get a wheelchair for her. When he returned he was told she wouldn’t be discharged until a home visit had been done and this was scheduled for Tuesday morning. He popped in to drop Mum’s clean washing off on Monday evening and she didn’t recognise him...thought he was a member of staff and asked him to change her incontinence pants - this broke his heart as you can imagine.

On Tuesday morning, my other brother took a day off work to be at Mam’s house ready for the assessment team. They didn’t show up. 

Tuesday afternoon we were told Mam would be moved to an assessment unit to see how she could manage for herself. We hoped this meant that her needs would be apparent, but sadly not. She was assessed for walking up three steps as this is what’s needed to access her home - and she passed, meaning the plan was back on to discharge her ASAP. This is when I broke. I work in a public-facing role for a large corporation, but every time someone spoke with me on Wednesday morning I burst into tears. This isn’t me. I’m usually stoical, practically minded and optimistic, but I was just worn down by the on/off situation of Mam’s ongoing care, as well as knowing she hasn’t got long left, and not being able to visit her - phone calls are brief as she can’t hold her phone for long. I had to go home from work and am now on dependence leave to try and help sort things out, and take some time for myself too.

The plan was to discharge Mum yesterday (Thursday), and we were getting ready. Chair and bed protectors, pads, oromorph prescription, schedule for who could do which mealtimes were all arranged, and then the hospital called. Mum can’t go home because there isn’t enough capacity within the community care team to do the visits she needs. Instead, she’s going to be moved to an assisted living room in a care home - when they can find a bed.

So today, as Mum’s feet and legs begin to swell, we are in limbo again waiting for the next step. I’m angry, frustrated and so very tired, but determined to make sure Mum gets the care and support she needs. 

Oh God, Elbereth....what a horrid horrid situation.Is there any way you can get PALS involved. they may help fight your corner. The way old folk are passed from pillar to post is disgraceful. I would much rather the people involved were honest and said right from the beginning that a lot of the care they mentioned was unreachable then you could have stepped in with a plan yourself. Seeing her abandoned in unfamiliar surroundings must be breaking your heart. 

Hi Dani,

It’s just a hideous situation all round. I just feel so helpless where normally I’d be on the ward fighting Mum’s corner. I spoke with PALS on Thursday, as well as our MacMillan nurse and was advised to speak to the Ward Sister - I couldn’t get through. I called Mum and that’s when she said there was another meeting about her later that day so I didn’t chase things any further until we got the outcome from that, which was the decision to move Mum to a care home. There still isn’t a bed available so she’s in hospital for now. We’re hoping that she feels comfortable in the home once she’s there as we don’t want to have to move her again, and while she wants to be in her own home, that isn’t the safest option for her as she’d be left alone for hours at a time.

We don’t think they’ll transfer her over a weekend - but who knows - but once she’s in the care home we should hopefully all be able to visit which would be something at least.

El.

Fingers crossed your mum is looked after and comfortable. Room does come up all the time so here’s hoping she can be moved soon. Those visits are so overdue. My heart goes out to you all. Good luck