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Elderly parents

Furious that Mom won’t accept carers

84 replies

NotTheMrMenAgain · 29/06/2024 12:51

Long story short - 3 years of treatment for 74 year old DM’s secondary cancer mets, now receiving palliative treatment. DF dead, she lives alone, only person to help her is me. Her mobility is very poor and will only get worse - zimmer at home and wheelchair to go out. Getting her in and out of the car becoming more difficult. She is on very strong painkillers which make her a bit confused - she often doesn’t know if it’s day or night, can’t remember if she’s eaten etc.

The cancer is eating her pelvis and once it fractures again there is nothing surgically they can do, so it will be game over, stuck in a bed until she dies.

She falls, frequently. 3 weeks ago she fell and was kept in hospital for 11 days, while they worked on her use of zimmer and physio etc. A few days after getting home she tried to walk across the room without using the zimmer or her sticks, so of course she fell. When I got there she told me she was using the zimmer, which was in a different room, then she said she’d been using 2 sticks - but they were nowhere near her. She tries to cruise around the house like a toddler, hanging onto furniture which moves, so she falls. I got upset and challenged her version events, she screamed at me that she wants to die anyway.

This past week she has fallen and been taken into hospital for 2 nights, was home for less than 24 hours when she fell again - nurses from a community team came to lift her but said she had to be admitted as she couldn’t remember falling and clearly wasn’t safe at home, which I completely agree with.

Just had a call from hospital social worker to say Mom is refusing a package of care because she doesn’t need any help - she has a neighbour that goes in once a week to do cleaning and I take her shopping once a week, so she’s fine.

I feel like screaming. She is clearly not coping and is not fine. I’ve been told by a friend who used to manage a care home that what mom needs is a nursing home, as she’s too far gone for a care home. One of the visiting nurses told me that even a full package of care wouldn’t be suitable as Mom will fall in between the carer visits. Meanwhile, in Mom’s deluded, she’s refused to have even a single carer visit per day.

People look at me like I should be able to sort this out. They say “Have a word with your mom” or “It’s time for a serious talk with her”, like that’s never crossed my mind for a bloody moment! I can’t talk to her. It’s like dealing with a petulant toddler - all “I want, I want” and no acceptance of the stark reality of the situation. It feels like this is a game to mom and she’s happy because she thinks she’s winning - her end goal is to be left alone in her house, but with me and various neighbours on call to help when she falls, which is unworkable and selfish.

I’m so angry and tired and sick of the whole situation. The past couple of weeks I’ve started to mentally and emotionally disengage, because it’s really dragging me down and affecting all other aspects of my life. I can’t cope with this hanging over my head all of the time, waiting for the next phone call.

I know she’s terminally ill and in pain and desperate to cling onto whatever she sees as her independence, but she’s not independent at all. She can’t go anywhere or do much without help. If she’d accept this her life would be so much better. There’s a very expensive, new nursing home locally which looks like a boutique hotel. She could be safe and looked after there, with fancy meals, activities and company for whatever is left of her life. But no, she’d rather spend it socially isolated, bored, lonely and wishing she were dead while lying in a puddle of her wee on the floor.

I can’t get my head around it and I can’t cope any more.

OP posts:
mathanxiety · 29/06/2024 15:28

This is so hard. Don't feel guilty for disengaging. She is leaving you, slowly, and you are accepting that. Don't feel guilty for feeling anger or frustration either. It is impossible to deal with someone who can't be reasonable or rational.

Is there any way she could be moved to hospice?

Greaterorlesser · 29/06/2024 15:46

Be careful when setting up a fall alarm that it doesn’t default to ringing you if the person wearing it falls. I nearly agreed to this for a relative who fell two or three times a day sometimes. It would have meant me basically living at their home. Their social worker suggested it as a way of keeping them safe after I had categorically said I wanted no part of the care plan and that I thought they were unsafe at home.

VJBR · 29/06/2024 15:59

Would she accept going to the nursing home just for some short term ‘respite’ then take it from there.

user1492757084 · 29/06/2024 16:07

Take your name off as Mum's next of kin.
She is being too difficult. The risks are too high of you being called a coersive daughter for getting her to agree to something she doesn't want.
Your DM is abusing your time and trust.
You need to leave her until the authorities can easily see that she is not capable of making her own decisions about some things.

willowthecat · 29/06/2024 16:07

If a nursing home place could be arranged, could you take her there from hospital and tell her it's another hospital where the doctors want her to rest before discharge home ? I know someone who had success with this method and it worked well- obviously not ideal to be deceptive but it's not called a second childhood for no reason...and she will be safer and possibly even happier once she settles

WeeOrcadian · 29/06/2024 16:07

Has mum had an actual assesment to see if she does indeed have full capacity?

Definitely contact adult SS and explain it all, they may have something in their arsenal

saraclara · 29/06/2024 16:13

Someone like her is entitled to four weeks of free respite care in a care home, particularly following a hospital admission.

That's what happened with my MIL. Once she'd settled in, she was given a permanent place there. Some care homes specialise in palliative care, so rather then feeling she's in an 'old folks home' it could be sold as a convalescent/ rehabilitation/pain management thing initially, with the later benefit of palliative expertise.

saraclara · 29/06/2024 16:16

WeeOrcadian · 29/06/2024 16:07

Has mum had an actual assesment to see if she does indeed have full capacity?

Definitely contact adult SS and explain it all, they may have something in their arsenal

The bar for capacity is incredibly low. There's no indication that OP 's mum is anywhere near that stage.

My mum spent the last decade of her life, in an extra care facility, making the most dreadful decisions. But she was entitled to do so. She passed capacity tests with flying colours every year, as we fully expected that she would.

Three months after her death and we're still dealing with the fallout of some of those decisions 🙄

PandyMoanyMum · 29/06/2024 16:22

Was she always difficult and unable to see beyond her own needs? Or were there times when she put you first?

If it’s the former then I agree with PP you have to decide your own boundaries of what you can/cannot do.

if it’s the latter then it may be worth talking to her about what her motivation is to stay at home without care and what her understanding is of the impact on you of finding her injured/dead? And that while she has lost control of what’s happening to her body she can still be your mum in all this by thinking about you too.

Sunnnybunny72 · 29/06/2024 16:26

We're going through this with MIL. Assists of nearly £1 million including non means tested state benefits pouring in every month and she refuses to pay for carers.
Tell them you won't be visiting or doing her shopping anymore and persuade the neighbour to stay away.
Only when a crisis develops ......

D1ngledanglers · 29/06/2024 16:29

I agree with @Scruffily in that it doesn’t sound like mum does have capacity to make this decision as she seems to lack insight into the risks at home and the support you’re prepared to provide.
I would suggest a meeting at the hospital to discuss your concerns.

spydar · 29/06/2024 16:34

People still fall over in care homes.

linelgreen · 29/06/2024 16:35

Don not allow hospital to discharge her. We had a similar issue with my father and I emailed the social worker stating that if they discharged him I would take it as an unsafe discharge as he had no family to care for him as both myself and my sister work full time so would only be able to do social visits to him and not provide any care. After a strained meeting with the social worked where both myself and sister reiterated what minimal support we could offer and in the event that they did discharge him to home we would take the matter up with the CQC and PALS as well as calling the ambulance service every time he fell to get him readmitted. Eventually she began to agree with our point of view especially as we could back it up with months of evidence prior to his hospital stay that showed quite clearly that he could not cope alone. However I honestly think that she only came onto our point of view when we told her he would be self funding and not require by financial input by social services. Amazingly she then accepted that a DOLS order should be put in place for his own safety and a nursing home placement was the best solution we had already provisionally booked a poon for him in the home we had researched and within two days he was transferred there where he lived out his final six months being cared for in an excellent manner by the staff.

Abitorangelooking · 29/06/2024 16:40

spydar · 29/06/2024 16:34

People still fall over in care homes.

They do but they have alarms and staff on site who come running. They can also encourage use of walking aids as constantly present.

Fraaahnces · 29/06/2024 16:41

As a nurse, one of the hardest things I had to come to terms with was the concept of people who have capacity have the right to do stupid and dangerous shit. (Currently thinking of FIL)
You may have to sign a statement to the discharge team at the hospital that they are discharging her knowing that you refuse to help her in her home anymore as she is resisting any further assistance. If she has a fall you will call 999 and wait, etc.

user1471538275 · 29/06/2024 16:47

If she has capacity and from what you describe it sounds like she does, she is entitled to make bad decisions.

It sounds like she had decided she wants to die in her own home.

She is allowed to choose that.

However you do not have to assist her in any way or increase the level of contact/care you are happy with because of her choices.

You need to let her know this and then leave her be.

HowIrresponsible · 29/06/2024 16:51

My mum was even more immobile than this. She couldn't move at all - not even adjust her position in bed.

Her cancer was so widespread when they found it that it wasn't even worth chemo or radiotherapy.

She refused a nursing home saying she'd be fine at home and potter around and recover. She was completely in denial. The NHS were only too happy to discharge her home and have me be the carer when I work full-time.

Mum finally relented and my sister was incensed. Frequent abuse calling me a cunt for not getting mum home and calling me selfish whilst stating she couldn't provide any care when she doesn't work.

I didn't want to be solely responsible for a terminally ill cancer patient who is immobile. That was unacceptable to my mum and sister.

When she was in the nursing home my sister and mum did everything they could to get her out. Despite the home, the GP, the palliative care team and Princess Alice hospice nurses not supporting mum being at home as it was unsafe.

Mum died in the home in the end and my sisters behaviour towards me means I've cut her off forever. I'm done.

At the end of the day it is the natural order of things for parents to die before their children. If you give up your entire life to deal with this (as I refused to) it will be harder to pick up the pieces when they do die.

Can you not refuse to be the carer / contact. I did that.

NotTheMrMenAgain · 29/06/2024 18:31

HowIrresponsible · 29/06/2024 16:51

My mum was even more immobile than this. She couldn't move at all - not even adjust her position in bed.

Her cancer was so widespread when they found it that it wasn't even worth chemo or radiotherapy.

She refused a nursing home saying she'd be fine at home and potter around and recover. She was completely in denial. The NHS were only too happy to discharge her home and have me be the carer when I work full-time.

Mum finally relented and my sister was incensed. Frequent abuse calling me a cunt for not getting mum home and calling me selfish whilst stating she couldn't provide any care when she doesn't work.

I didn't want to be solely responsible for a terminally ill cancer patient who is immobile. That was unacceptable to my mum and sister.

When she was in the nursing home my sister and mum did everything they could to get her out. Despite the home, the GP, the palliative care team and Princess Alice hospice nurses not supporting mum being at home as it was unsafe.

Mum died in the home in the end and my sisters behaviour towards me means I've cut her off forever. I'm done.

At the end of the day it is the natural order of things for parents to die before their children. If you give up your entire life to deal with this (as I refused to) it will be harder to pick up the pieces when they do die.

Can you not refuse to be the carer / contact. I did that.

That sounds bloody awful and somewhat similar to my situation. She wants to be at home and die at home. I have a sibling who lives hours away, doesn’t call or visit DM, doesn’t actually care, but would be happy to stick his narcissistic oar in, if it meant he got to yell at people and play the ‘big I am’ - I don’t speak to him at all once DM is gone I’ll never contact him again.

Whenever she’s in hospital, if it’s a planned surgery or an emergency ambulance trip, all she cares about is when is she going home. She gets aggressive if she can’t go home soon enough - I had a call from her a few hours ago where she was verbally aggressive (not abusive) and demanding to know if I’d been told she was going home today because she was expecting it and he been sitting, waiting for hours. I think she’s annoyed because I said she’d need hospital transport because I have a little medical issue at the moment that means I can’t push her wheelchair. Also, as a side note, I actually don’t want to physically collect her anyway because I know she’s not safe at home!

OP posts:
NotTheMrMenAgain · 29/06/2024 18:32

user1471538275 · 29/06/2024 16:47

If she has capacity and from what you describe it sounds like she does, she is entitled to make bad decisions.

It sounds like she had decided she wants to die in her own home.

She is allowed to choose that.

However you do not have to assist her in any way or increase the level of contact/care you are happy with because of her choices.

You need to let her know this and then leave her be.

Thank you for this - it’s precisely how I’m feeling at the moment.

OP posts:
Springwatch123 · 29/06/2024 18:35

We’ve been where you are. We arranged carers originally for df as his mobility deteriorated. Dm hated the intrusion, of having people ‘invade’ her home etc. it didn’t help that they came at irregular I at times. She also didn’t know how to use them. Ie, to do washing, clearing up etc

Four years later, as her mobility has worsened, she’s at last accepting them. I think it helps that the current crop are pretty helpful and she gets on with them. She’s got used to asking them to do things etc.

NotTheMrMenAgain · 29/06/2024 18:37

PandyMoanyMum · 29/06/2024 16:22

Was she always difficult and unable to see beyond her own needs? Or were there times when she put you first?

If it’s the former then I agree with PP you have to decide your own boundaries of what you can/cannot do.

if it’s the latter then it may be worth talking to her about what her motivation is to stay at home without care and what her understanding is of the impact on you of finding her injured/dead? And that while she has lost control of what’s happening to her body she can still be your mum in all this by thinking about you too.

She was a wonderful DM, a single parent who always put us first, not much money but I always had everything I needed and felt secure and loved. Which makes this worse in a way. I adored her, always have. When DF (step-dad but in every sense of the word my ‘dad’ since I was a young teen and a brilliant grandad to DC) collapsed and died very suddenly at home just before lockdown started, she suffered from traumatic bereavement and it utterly altered her. I wasn’t able to grieve for DF as everything became about her and I was consumed by her needs - and it hasn’t changed in the years since.

OP posts:
Pantaloons99 · 29/06/2024 18:38

I feel for you greatly. I feel for your mum greatly

The sooner Medical Assistance In Dying is legalised in this country the better. Your mum has just lost all motivation to live and just wants it over. I totally empathise having to deal with horrific life changing conditions and being at the mercy of others. It really is no picnic being vulnerable and at the mercy of care givers in a home or otherwise.

But, it's too much for you also 🙏 I hope so much her suffering just ends soon. Put it back on social services and force the issue.

NotTheMrMenAgain · 29/06/2024 18:40

saraclara · 29/06/2024 16:16

The bar for capacity is incredibly low. There's no indication that OP 's mum is anywhere near that stage.

My mum spent the last decade of her life, in an extra care facility, making the most dreadful decisions. But she was entitled to do so. She passed capacity tests with flying colours every year, as we fully expected that she would.

Three months after her death and we're still dealing with the fallout of some of those decisions 🙄

Edited

Yup, yup and yup. I have no idea what sort of a state someone would have to actually be in to fail the capacity test. I dread to think!

OP posts:
CarolineFields · 29/06/2024 18:49

There is nothing at all you can do.

My relative turned down all help. They were supposed to be assessed for capacity but refused to cooperate, so were deemed to have capacity.

Don't ask me how that works, you only don't have capacity if you agree to be assessed!?!?!?! People who don't have capacity don't agree to be assessed.

Anyway, they wondered off in their pajamas one rainy night, and got lost and died of exposure

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