What to expect now

Benefits, finances and funding
64

I appreciate it. However, I am with my mum on this one. The other side of the city is just very different, and the area is not as hustling as she is used to. There are no shops nearby, and it’s a few bus rides to get to the nearest. There is also not a lot in that area even doctors appointments would take too much effort. It’s the same with dentist and other services. She also has mobility issues too, so this wouldn’t be great for her. She is not someone who can adapt to the unfamiliar either. It’s been two years since my dad died and she hasn’t coped so.

Above all she grew up in the part of the city, and to take her out of it would be very damaging. She has been to the place many times, but she always says how much she hates it because of how remote it is.

The area she/we live is a main road known for its history so it’s very thriving and mum knows a lot of people up here. She has her doctors up there and knows all the shops. Other people I can understand, however I am with her on that one. I would not want to move up there based on my own mental health. It’s too different, it’s hard to navigate, no shops for miles, known for crime.

I think she just needs familiarity. We can’t get her to adapt to actually dealing with her own MH at the moment and this is far too much of a change for it to be beneficial.

65

I see now.
Yes it would be completely wrong for your mother to be moved there.

67

It’s okay. You were being pragmatic. It’s hard to describe without saying where it is, but the differences between the west and east side of the city are big. The west (our side) is what she, and i are used to. The west also has a lot more shopping areas, charity shops and places she likes to go to. In the east part of the city, that’s all being put in one central part. The care home is on the outskirts so it’s too much for her.

I think she just needs familiarity. She has friends around her too, even if they are people she just sees “on road” for a small talk. It helps her. So I’m completely with her on that one. I know you can argue she would make friends in either one she goes, but familiarity is key. Part of her condition means she feels extremely unsafe in certain places and we’ll this is it. The assisted living facility in the west part is so close to where she is now, streets away in fact. It is close to two main shopping areas, plus lots more smaller retail parks.

68

Like in the east it takes a few busses to get to the city centre. She has a hard time with getting on buses and remembering which one to get on. Whereas in the west it’s so close to city centre. As for busses multiple of them come down the street so it doesn’t matter what number she gets as long as it’s going in the right direction. It is the same with my sister, she lives along the main road. She is partially sighted so she has a hard time getting buses because she can’t see which number it is until it’s metres under front of her. The good thing is the bus stop opposite her house has busses which all go to the centre, so she just has to get one and she will get there.

69

No they can’t uproot your mother from where she has facilities and her community on her doorstep to somewhere strange and remote.
it is good that they are respecting that.

70

Yeah, the biggest problem I face is that mum is just not adapting after dad died. Yet it’s been two years, everyday she is acting like it happened yesterday, and she can’t cope without him.

When he was sick in hospital before his death and recieving chemo and radio, she didn’t want him to have it and kept kicking off to doctors and nurses about it. She wanted him home and never understood how sick he was. I mean the man couldnt talk and move for Petes sake.

She acts like he died to get away from her. Yet in someways she contributed. Dad could not speak for himself, and the doctors told him he needed a nebuliser. Yes the hospital should have got him one, but peak pandemic they were hard to get. Mum knew he needed one but instead of saying to me and my sister can you get one she spent the whole time arguing about how hard it was for her. I know dad would have been too proud to accept that his kids paid for it, but both of us would have just handed our bank cards over at that point. Based on what he was submitted into hospital with, I still believe if she told us it would have saved his life.

About a month before his death he recieved the news that the cancer has most likely gone. Yet they had to wait for an appointment at the end of January to determine that. He never made it.

71

It sounds like your mother was in some form of denial finding it very hard to handle and accept, tipping her over her edge. In a way that could be her way of coping with it saying he did it to get away from her, blaming him for it kind of reasons, a proper grief trained psychologist would be the best placed person to analyse that. But who is to to say that a nebuliser would have been enough, that it would have saved him? There is a possibility that it might not have been, not an easy thought to deal with.

Emotions, coping mechanisms, psychology, relationships, mentality, acceptance, denial, the deep unknown workings of the mind a forever mystery.

A year or so after we lost my dad, my told us how she would sit in her chair and tell him off for leaving her. Grief psychologists say it is one of the hardest losses is to lose a spouse due to the bond for producing children. I don’t know if your mum will do it or if she will be receptive to it but is there any way she would try grief counselling?

Here are some thoughts, from my way older years of life experiences and I hope they will help you to think about things/have another perspective on them.

Most likely gone, not has gone, not completely successfully removed.
Cancer is sneaky it can’t be trusted. cancer and/or treatment lowers/removes the immune system to viruses and bugs etc, so with a lowered immune system, even a nebuliser might not have been enough.

A colleague had a chest tumour successfully removed and was arranging to return to work.
He was ill again. Returned to hospital and a very fast spreading aggressive cancer had taken over, very rare and nasty and he was told it was fatal, so he didn’t return to work, he stayed at home for his end of life care. Another colleague had been complaining for a very long time about pains in his back, he finally went to the doctor who sent him straight to the hospital, he was told it was cancer tumours and he had days left to live. Cancer can be that deceptive and vicious, it’s a sneaky nasty piece of work. It took my dad.
I’ve done Race for Life many times and rather than run, I walked and listened to stories from others who they are running for, it was enlightening because all I had known at the start was my dad’s cancer.

72

Yes I agree with you somewhat about the nebuliser. Because of the type of cancer, the chemo and radio did what it does and sent my dads body into overdrive. His body reacted my producing a ton of mucus and he was always trying to cough it up, however he had a locked jaw as a side effect so it wasn’t easy. The mucus set in his lungs and built up overtime causing him to have difficulty breathing one night. He was rushed into hospital but thanks to the pandemic, doctors put more effort into testing for covid. All the while oxygen wasn’t getting to his brain, and heart. He eventually suffered a cardiac arrest, and we’ll staffing being what it is/was they didn’t get to him quickly. 7 minutes I believe. Everyone’s probably heard the theory that every minute equals 10 per cent by now. So by this point he had brain damage and later died from pneumonia.

Even the doctors on the resus ward said it was caused by the mucus in his throat.

I also agree with you that my mum would have struggled with it. We’ll still does. I don’t know if grief councilling would really help her, and if she was to receive it then she would need a proper nhs physiologist as opposed to a generic one. I don’t mean this offensively, just because they are trained more in depth with trauma. What mum is experiencing cuts deeper. She will never get over his death I know that.

73

That is so tragic and so hard for you to cope with.
I’m sat here taking a few minutes to take all that in and feeling for you.

Without a doubt your mother would require a specialist and the time and patience for her to be receptive to it. Should that become available to her.

I don’t know that anyone ever does get over it, they find their own way of coping with it, living alongside it, finding how to carry on with life and get on with things, but it is more complex for your mum.

74

She is under the mental health team, but again as always she is stuck in limbo waiting for someone to take her case on.

She is just too much to deal with, and her mental health is just dangerous. It is one thing to say go back and help her, but she has rages and kicks me out for the night. I have been hit in the past. I don’t think that is very fair to expect me to sleep on the street because she couldn’t have her own way because I told her no I will not drive you 200 miles at 10pm to meet a guy you just met online for 10 minutes. She is like that.I don’t exactly have anywhere to go, people think I do but I don’t. We have no family.

She’s also getting absolutely infatuated with men. Lije I get it she’s lost after dad. Like she’s just constantly meeting bloke after bloke, they hurt her and then she’s left confused. She’s then threatening harm on herself because they aren’t becoming dad for her like she wants. If they want to go to work she’s going on rages to them, she punched someone for this. He responded and now she has a fractured arm. So now she’s even more incapacitated.

I’ve told her a million times, she needs to do it the right way. Dad is not going to turn up on a dating app. He’d be telling her off for using them really. I don’t even think she wants another partner, she wants dad but that isn’t going to happen. She really needs to sort herself out.

It’s the same if you are in the same room as her, you can’t go out to shop, or see a friend. You can’t even say to her I’m going to the toilet or bed before she is threatening to harm herself because you’ve left her. Yet it’s okay when she wants to go out.

75

Far too much for you to deal with and definitely needs proper professionals to help her.

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76

Definitely. She keeps ringing me up telling me that she can’t do anything for herself like the washing, getting showers, vaccuming or cleaning. I’m trying to do what I can for her but I can’t call up till Monday. She definitely needs carers. I am getting extremely annoyed with her sending me the same photos of her fractured arm over and over again. It’s like I get it but she never stops

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77

Not as long to wait to speak with them now, it is less than 14 hours for their offices to open unless they open at 0800 hrs, hang in there.

78

So I spoke to them. Her care package is just about to be signed off. They said it could take a few weeks yet. She also has her assisted living assessment on Thursday. I have called the extra care team, and they say that there is a chance that she may go on the urgent need list which may make it quicker. Otherwise there is a long list, they say about 5 people for every one accommodation which is a real drag. I am trying to find out the criteria for the urgent need one.

I just feel like I can’t do this anymore. I can’t keep fighting her corner. Yes it is good that she is going on the list, but how long is she expected to wait. I just want my life back completely. I want to be able to live without worry over her constant needs. I also just think she is being selfish, by using my dads death as an excuse to “go off the rails.”

I just want so much more. I am 26 in a few days, and I just want to settle down with my partner, get a place and carry on with our lives. I want to be able to go on holidays and take trips to the supermarket without her constant need for attention.

79

Good luck. Keep us updated.

80

I just have a feeling that she won’t be put on the urgent list and it could be a while before she gets it.

I’m just at a loss for what to do really. I can’t cope with her anymore. She is too occupied by other things and keeps missing appointments.

She just won’t focus whatsoever and is getting prepccupped by things all the time.

I have been trying to look for alternative housing places, so will try to get her on the list for those apparently they are all full too. It’s a nightmare

81

So there is good news but in an unsatisfactory format of not being instant action and there being no magic wand or crystal ball.
Fingers crossed she will be put on the urgent list.

Keep standing firm and maintain your boundaries .
Keep SS updated to deteriorations and keep chasing them, exhausting but will be worth it.
Keep one eye on that light at the end of tunnel of your mum having the care she needs and you having your life. Persistence and patience. So near but so far, don’t give up and don’t give in.

yes of course you want your life back and your mum to be more herself and to be your mum again.
Unfortunately it will take time, resilience, patience and perseverance, stay strong.

82

The trouble is complete lack of provisions in the area. I know the country is in dire straits right now and social care is so badly affected. I live in one of the most forgotten parts of the country (provisions are so stretched here).

There are so many places and it seems like there are more people on the list then there are homes. But how many people are falling through the cracks, I wonder. I have already written to the local newspaper, and my MP about it. I am awaiting a response. I am fed up because there seems to a million and one housing developments in the area, and none for any new assisted living developments which seem to be needed so badly. The irony being these places are considered affordable despite the median wage of the city being one of the lowest in the country. So it’s just a waste of time.

I have spoken to both the extra care team and the social worker today. The EC team said they there is an urgent list, but the woman couldn’t tell me what was classed as urgent because she didn’t know. Off the top of her head, she said end of life care, but I don’t think she knew what she meant. So I’m left wondering what is considered urgent. She also said homelessness was not included on the urgent list. So I wonder what constitutes urgent.

I know my mum needs a generic flat, so should be easier. The trouble is the one she wants to go into accommodates people from the age of 18 which worries me a little since they say that places only ever come available if someone moves on or dies. It’s horrible circumstances to think about already, but then I wonder if the place gets filled with younger people, does that mean the list never moves? What happens then?

Once again it just seems like disabled people are left to struggle on the scrap heap.

83

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I have found this on some website mum Is involved in all of these categories so I wonder if it’s based on all of them.

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84

My guess is that they will have their own scoring criteria and assess your mum against that just like they will for everyone else. I don’t have any experience or knowledge in this area at all.

You can’t second guess or pin hopes on unknown criteria scoring.
Try an online search for local groups about social care, social residential homing, assisted living urgent or emergency criteria - play around with them for searches.

Keep pushing.