Here for advice on mum, care homes, hospitals, hospices

Hi all. Firstly thank you for having this sort of public place to research, vent and find answers. Just typing this opening line makes me feel better about the situation I find myself in with my mum so let me give you some background.

I do hope this is the right place to ask questions about my situation because I’m not a carer but my elderly mum is looking like she’s going to need care and likely residential very soon and while I know all the information is out there, right now I need someone to read/listen and a dialogue. This will be the first time I’ve written this all down so it’s a bit of therapy on my part too I suppose.

So 2019 mum starts to feel ill at home and in her stubborn way she decides she’ll muddle through and it’ll pass. Dad sees through this and calls an ambulance and then two days later he calls me saying she’s in the hospital, has had a bowel operation and to call them to find out more. The delay is because she didn’t want to worry me which is typical and typically frustrating but welcome to my world! Anyway, I call the hospital and they start mentioning when the chemotherapy will start. A bit of a WTF moment later and they realise nobody has spoke to me about what else the found inside her. Nice. A year later, around September 2020, Dad dies after several years of deteriorating health leaving her at home by herself. I live 100 miles away with my family.

She’s been on cancer treatment since shortly after her operation for 2 years now and it’s all gone very well up until January this year when she started to get serious pain in her side which we now know is due to a small cancer on her rib. Around 3 weeks ago it got too much for her to cope with was admitted to hospital with serious breathing difficulty. Her doctors call and tell me she has pneumonia and that is the priority now. That gets addressed over a couple of weeks and to help further with the pain she’s moved to a hospice next door where they’ve done a great job of sorting out her pain relief to a manageable level and with drugs she can take at home. Needless to say she was happy and in good spirits. She also liked the food, people and rest at the hospice.

Last Thursday she’s on her way home, mostly pain free.

Around 11pm that night I’m in bed and see some movement on the Nest cameras I set up to keep an eye on her after dad died. Her friend and neighbour (a real gem) said she’d be there when mum got back to unpack with her and just see she’s ok before bed. Both said no need to come over, she’s great. Well, it didn’t go as planned to say the least. You can only imagine how it feels to watch your mum trying to crawl up one step at the top of the stair case after getting of my late dad’s stair lift - she has never needed or wanted to use it btw. I called immediately and spoke to her friend and asked what was happening. My mum, likely because her bed rest for several weeks - I think she got too used to having everything done for her - and various steroids, had lost all power in her quads and simply could not stand up off the stair lift and get up one step on to the landing to get to the loo. This was now 12am after we got an ambulance to get out (more on that later). She could walk with a walker they gave her but nobody at the hospice asked if she had any steps to get up nor did they even check she could lift her legs rather than shuffle.

I arrive there around 2am and sit with my mum now downstairs and wait for the ambulance. It arrived 3 hours later. Thankfully in the meantime a doctor has come out and checked she’s ok and aside from what happens when you miss the toilet as a 76 year old she’s safe. Safe but angry at herself and he legs. The ambulance was directed to take her back to the hospice who clearly did a poor job of assessing her to leave and care for herself at home. You can imagine the fury I felt while trying to keep calm with mum. She did a better job than I did.

Still with me? Good and thank you for sharing some of the weight by reading this. As I write this I’m watching my daughter do her climbing, working out a house move for my family and now feeling out of my depth, frustrated, selfish, angry, impatient and sacred for what’s going to happen with mum. All of those things will be in mum’s head too. It’s all a bit crappy to say the least and such a rapid change that it’s overwhelming.

Mum’s breathing is now poor again today and couldn’t even bring herself to call me separately to her friend today who relayed the message to me - I’m sure this is anxiety on her part rather than any pneumonia though so that’s something :slight_smile:

Anyway, here we are with my current problem: Mum does not want to go home. That incident on the stairs must have rocked her so much she’s admitted she now can’t look after herself. Whether it’s the fact she’s liked being looked after in the hospice or she’s realised that maybe she’s deteriorated in the space of a month to not being able to cope I don’t know but I think she might be better having people and care around her now.

So what’s happening now? I need to speak to the hospice tomorrow and get their assessment on how mum is now and then look at what care options can be put forward. They kindly sent over a lot of equipment to her house on Saturday to assist with her going home and yesterday she agreed and was happy to have a commode downstairs and a bed there as well. This would help her regain her strength and composure but obviously something has changed overnight. I’m also going to exercise power of attorney so any decisions have to go through me and not only her. She’s of sound mind but may not being giving all the information people need right now - that last step on the stair case for example.

So now I’m in need of advice, things to ask, look out for, you name it. Since dad died I own half her house which my parents arranged for situations like this so their grandkids would have some sort of inheritance to start them off rather than their care taking it all. My bare understanding is we’d have to sell the house and her remaining money would then pay for the care fees and then the local authority would then pick up the rest once the pot ran dry.

I hate that I have to even think about money, family homes and my mum’s care in the same sentence. It fills me with a sense of selfish guilt right next to my need to care for her as she and dad cared for me. Just horrid. How do I even start this process? Can she be sent home without her consent? Loads of things are rattling around my head and it feels like I’ve got to get the answers and solutions right away - unlikely the case in reality but it sure feels like that.

So yes that’s pretty much a summary of the last 2 years, the last 4 weeks, written in the last 20 mins.

Thanks for reading, it’s been helpful writing all this down. All advice welcome.

First, you need to know the extent of mum’s cancer. You can’t make any decisions until you know this.
As you have POA, send the GP, the hospice, and the hospital each a copy.
Demand to be given the FULL story.
You do NOT have to sell the house.
Google NHS Continuing Healthcare Framework and look at the “Checklist Assessment”.
Work out where mum is at the moment. Insist on this being done before ANY more decisions are made.
Mum should have had 6 weeks free reablement care after leaving the hospital.
Was this arranged? There should have been a full assessment before leaving anywhere.
Ask for a copy.
You will realise I’ve had similar issues. It’s all horrible.

Thanks for the reply.

POA will be done on the 11th as that’s the earliest I can get a meeting with the solicitor although I will call tomorrow to see if they can do it faster under the circumstances.

Her cancer is not the issue at hand as that’s under control and hasn’t grown. The problem it did cause is the pain though but that should be under control now, although it is inoperable due to where the main one is. She’s been cutting down trees and painting houses over the last two years. Obviously things change though so I’ll speak to them as well so there’s a complete picture. I’m on good terms with her cancer consultants and they’ve been very open with me about it all. Right now they’re not the problem and neither was the hospital who have been great. It’s the hospice who are a charity. She was sent there by the local hospital.

Reablement was clearly lacking and they mentioned no plan. The fact they sent all the home equipment the day after she was released is stupid and shows they just made lots of mistakes. They’ve apologised but words mean nothing now.

On the framework, I read that earlier and got pretty far down with lots of reasons why she shouldn’t be let home. Another thing to ask the hospice so thank you for that.

Sorry to hear this isn’t a unique case and I appreciate the direction.

Feel free to ask whatever you need to, as many times as you like. It’s such a difficult situation, and really sad too.
All four of our parents were disabled for years before they passed away.
Stubborn as mules, all of them, with stoic phrases like “I can cope” when clearly they couldn’t!

When I came home after major life saving surgery, on a Friday, I was promised all the equipment I needed would be delivered the same day. It finally arrived the following Tuesday!! I’m nearly 6ft tall, it was incredibly difficult and painful to get in and out of a chair or use the loo. Fortunately, my husband was alive then, and could help me.

I warn everyone never to agree to a Friday discharge unless
a) all the equipment has already arrived and
b) you’ve already me the care manager who will provide the reablement care and it will start immediately on discharge!

Thank you, sounds like you’ve been through the mill.

Could you explain why she wouldn’t need to sell her home if a care home is needed? I always thought she’d have to initially fund her care and then they would be paid by the local council. So much misinformation out there so I’m grateful for the perspectives here.

Hi David

As a forum ambassador I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it. I can see some fellow members are already providing advice and no doubt others will have been through a similar experience.

First of all, it may be worth giving the Carers UK helpline a call to discuss your situation. Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email ( They can help provide support and guidance on:

  • Benefits and financial support
  • Your rights as a carer in the workplace
  • Carers’ assessments and how to get support in your caring role
  • Services available to carers and the people you care for
  • How to complain effectively and challenge decisions.

Carers UK also run online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK - the next online meet up is today (Monday 27 Sept), 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.