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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:
Lamelie · 29/06/2024 12:57
Flowers I’m so sorry. She needs to go to the nursing home. Go to town with the social worker. What is the consequence of refusing the care package?
Sugartreemumma · 29/06/2024 12:58

I'm so sorry that you are in this dreadful and very stressful situation.
There are no good options for you here and so you will have to default to the least worst option.
The least worst option is probably to step back and say you are unable to help anymore. Your mother will then have to accept carers.

Rosa · 29/06/2024 12:58

This is so hard - The hospital needs to listen to you as well - REfuse to have her home until she has this in place.Easier said than done but seeing as she has been in so many times recently they hav eto see the pattern. Teh neighbour is going on holiday and you have work comitments so something has to be put in place

gamerchick · 29/06/2024 13:00

Tell the hospital that you're refusing to have her home and if they discharge her it will be an unsafe one. You'll need to force the issue.

SierraSapphire · 29/06/2024 13:02

Sympathies, my 91-year-old Mum isn't quite as bad as yours it sounds, but we have multiple emergency hospital visits and stays for her heart or whatever, but she refuses to get carers and I or DD when she's home from university have to bail her out. Even when I had cancer and I begged her to get help, she refused. I disengage too. She has capacity to make her own decisions with her own risks, and I can't be responsible for her bad decisions, we just have crisis after crisis but I cannot meet her every need. On the other hand it's shit disengaging because if she had carers to do some things, we could actually have a nice time together in her remaining, weeks, months, probably not years. I have friends who are not carers who say "Can't you just..." whatever, it's massively frustrating. Also "how's your mum?" - well she's fine but I'm going under!

it does sound though like it would be an unsafe discharge and it may be that they're not going to discharge your DM home anyway and you have the social worker on your side. You just have to keep telling staff you can't do it, some of them you feel are giving you the side eye, but others completely understand.

It's hard, but you just have to set your own boundaries as everybody else is going to push them. Decide what you are and are and aren't going to do. I won't do anything that could be done by anyone, but I will do things where she needs my specific medical knowledge or some of the financial stuff which understandably she doesn't want to handover to a carer. Then you just have to keep your boundaries and keep repeating them however hard it is, and recognise that it might be that something shit happens but actually you are not in control of that.

Sorry this is happening Flowers.

Paperthin · 29/06/2024 13:03

It does sound like she needs to be in a nursing home environment as even with carers she could be at risk in between visits anyway? Has no one mentioned residential nursing care so far?
OP this is a conversation you do need to have with the hospital and social work team - I have been here - it’s tough I know but unless you ask/suggest/advocate for your DM the hospital will keep on discharging her sadly.

stayathomegardener · 29/06/2024 13:04

To be honest her kind neighbour is a hinderance in this, you need to tell social services there is no support and you yourself have reached breaking point (they actually term this as carer breakdown) and should then put something in place.

Very hard for you to step back during this transition period though.

Patsy7299 · 29/06/2024 13:29

say these words on repeat and don’t stop.
“unsafe discharge” “carer burnout” “relinquishing all duty of care for mum”. It’s hard and you’ll feel guilty but it’s the only way they will listen. Good luck and sending love x

MumblesParty · 29/06/2024 13:32

You need to be firm with the social worker that she is not safe at home. It sounds as if she’d be back in hospital within a few days anyway.

NotTheMrMenAgain · 29/06/2024 13:33

Thank you everyone for replying. It really is quite stressful. The reality is that she lives in her own home and has mental capacity, so can make as many awful decisions as she likes, her right to do so is legally protected. I can’t refuse to have her home as she doesn’t live with me (thank all of the God’s, I wouldn’t have made it this far if she did!).

I was very clear with the social worker on the phone today that I believe DM is not safe at home and I completely disagree with her decision. Social worker said it’s very difficult as they can’t force her to accept care. So whatever happens will have to happen.

I’m very much of the mindset now that the cards can fall how they will, but I won’t be picking up the extra slack caused by her poor decisions. I’ll do the regular stuff like appointments and shopping, but I won’t be spending half the night at her house umpteen nights a week, waiting for an ambulance. I have DC to consider and also my own mental health.

@SierraSapphire you’ve hit the nail squarely on the head - I can’t be responsible her her bad decisions. It is really shit, because there’s no chance of making the most of the time left or “making memories” 🤢 when you’re lurching from crisis to crisis. I don’t even feel like her daughter any more, she’s changed so much and it’s a transactional relationship where she needs me to do X, Y and Z and I do them, then we move straight back to the start of the bloody alphabet! 🤦🏼‍♀️

“Disengagement mode activated” I suppose, for my own survival.

Massive hugs and best wishes for anyone else going through this. DM says she never thought she’d end up like this and I always think “Well, I never thought I’d end up like this, either!”

OP posts:
Changingplace · 29/06/2024 13:34

I’m so sorry you’re in this situation, it sounds awful :(

Sorry if this sounds callous, but if she falls again and ends up in hospital can you say at that point to social workers/her she absolutely can not be discharged home, and at that point she has to go to a nursing home?

edit: sorry I was typing this at the same time you were replying x

Healingvibes · 29/06/2024 13:39

It's a horrible situation to be in and extremely frustrating for you. Whilst your DM is clearly going through a horrible time, it's helping no-one that she is being so stubborn and it will eventually take its toll on your health too.

When my DM had several falls in a short space of time resulting in a number of hospital stays, the person she finally listened to was a lovely paramedic who told her in no uncertain terms that she could not go on like this and that it wasn't fair to her family (ie, me); he also turned to me and said something like, "You cannot let this go on and have to insist she moves to a care home. We can't keep coming back" etc etc.

I had tried a private carer and after the last hospital stay she had a care package but neither was the answer. Once she agreed to go to a care home - and I had already done a lot of research - she actually moved within about a week of the decision being made [we were lucky that the care home had a vacancy]. Since then she has inevitably declined as she has dementia but I no longer worry on a daily basis whether she'll have another fall.

Also, I've been able to clear and sell her house so will not now have to worry about that once she's passed away.

I've since been diagnosed with stage 3 cancer and have managed to keep it from her - I could not have done so if I was doing what I previously had to do for her.

All good wishes to you 💐

TheShellBeach · 29/06/2024 13:41

There's a thread for this situation where you'll get support and advice.
https://www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3

Abitorangelooking · 29/06/2024 13:43

It's awful but disengagement is the only way. Eventually she will concede and go to nursing home or she will die as per her wishes.

I can understand her viewpoint to be honest, she has a horrible disease, it won't get better. Spending 1k+ a week to have the process dragged out when you are ready to die is counter intuitive.

Sugartreemumma · 29/06/2024 13:49

Sadly we do not as a society have the resources to cater for the ever increasing and ever more complex needs of our growing elderly population.
Things are only going to get worse and it makes no sense for young people to Sacrifice themselves for the elderly.

TheSquareMile · 29/06/2024 14:10

I feel for you, OP, this is a very difficult situation.

I was going to suggest the Power of Attorney option, but would urge you to take advice from a practising solicitor on that one.

Would it be permissible for you to ask her GP to make a home visit to speak to her about the way forward now?

https://www.gov.uk/power-of-attorney

BlueLegume · 29/06/2024 14:11

@NotTheMrMenAgain huge sympathies. There are some amazing people on this site with such great advice. The overriding advice is ‘put your own oxygen mask on first’. So many of us have similar experiences. Mine is a complex DM, always has been who has 3 capable adult children. Every single suggestion over many years has been rebutted with NO. She has fallen out with every neighbour, every family member and is now refusing a cleaner, gardener meal service. She is making is abundantly clear she expects us to drop everything and be her carer. We likely will have to as she has no one else. I veer between trying to come up with new suggestions and then just thinking NO @bluelegume she will still find negativity in everything. It’s the silliness sometimes that really rankles. Putting things in the refuse and her saying you aren’t allowed. Challenging this with I doubt the refuse collectors check what’s in the trash is met with - ‘well they do round here’. And yes we have had her tested for everything. Sadly no medication for a lifelong Negative Nancy. Flowers

RedRobyn101 · 29/06/2024 14:12

From what you say OP, you can’t refuse to have her home because she has/lives in her own home. if she has mental capacity then she has the ability to make her own decisions even if we deem them to be poor. If she doesn’t want to leave her home (and she has the ability to make this choice) would she accept carers 4 times a day and perhaps have hand rails, mobility aids, falls alarms etc in every room. And can you and other family members visit more regularly? If she hasn’t got long left, why not make the most of this time.

Ketzele · 29/06/2024 14:28

I'm so sorry, OP. I think, first of all, you need your oxygen mask. Take a step away, breathe, accept the logic of what you have told us here. She has mental capacity, she says she wants to die, she is in fact voting with her feet. She is not playing games, she is not trying to beat you, she is making her choices.

That puts you in a very uncomfortable position, but she has made the choices that are hers to make. The choices you have are to continue propping her up or step right back. Adult social care will need to be clearly informed of this.

By stepping back and refusing responsibility, you may be able to release the anger and feel more loving of your mum in the time you have left. It worked for me, anyway.

Scruffily · 29/06/2024 14:29

Are you sure she has capacity? It sounds like she has no understanding of how to keep herself safe, nor is she able to take in the fact that if she goes home you won't be there to look after her. Talk to the hospital about another capacity reassessment.

If they decide that she has capacity, unfortunately it has to be on the basis that she is entitled to make bad decisions but you have no duty to rescue her from them. The reality is that if they discharge her home she will be back in hospital within hours and they will have to sort that one out.

Sandwichgen · 29/06/2024 14:37

My df was discharged to a nursing home in lieu of a non-acute hospital bed because they needed his acute bed but didn’t have any vacancies on the wards. He had been Iill with sepsis for months and was immobile as a result. Trying to walk just ended in falls

once in the nursing home, he accepted the situation and we used his savings to pay after the initial free 6 weeks. He died quite soon afterwards, as we had been warned he would

would this sort of discharge be an option?

Mischance · 29/06/2024 14:40

The social worker needs to be told very clearly that you cannot look after your mother and that if they decide to send her home she will be without help of any kind from anyone.

God I know how hard this is - and I used to be a social worker with adults - but as long as you are around she will be sent home and you will find yourself dealing with it all again.

They need to know that you cannot take responsibility for this - that you are not going to have a word with her and try and persuade her - that they need to treat her as someone with no family.

Ask for a carer's assessment. State in there that you are not able to care for her.

It is hell I know - on the one hand you want to do right by her and feel sad that she is so unwell - but on the other there truly is nothing you can do.

The chances are that if she is sent home she will fall and one of these falls will be the trigger that ends her life, but if the powers that be are accepting her as having mental capacity and make the decision to send her out, then they must carry the can for that.

You have my sympathy.

SierraSapphire · 29/06/2024 14:44

Sorry to hear about your cancer @Healingvibes - I was also diagnosed with stage three cancer, with the only risk factor that I had being the stress of taking care of my DPs and to neglect my own life and health. I have now been no evidence of disease (touch wood!) for two years, and it has made me strengthen my boundaries, so hope you get through it too.

OP yes the transactional nature of it does my head in as well, when she was in hospital I was getting constant texts, bring this, bring that, do this, do that, oh I'm sorry I forgot I was in hospital you don't need to bring that etc. etc. - one of the factors that causes burnout and vicarious trauma is unreciprocated giving. I don't know whether my mum forgets that I had cancer or whether she ignores it on purpose, I expect the latter because even when I mention it, she changes the subject because it doesn't fit her need for me to be there for her. You can't carry on being a "non-person" (IYSWIM) for months or years on end and it not start to affect you.

Healingvibes · 29/06/2024 14:55

SierraSapphire - I'm so sorry to hear what you've been going through but am pleased you are clear of cancer. I could write a book about the failures of my GP surgery over an 18 month period to listen to me but that's not really relevant here.

I hate to raise this issue, but I do think that we as a country need to be brave enough to have a grown-up discussion about the choice of certain terminally ill people to be allowed to make the decision that they've had enough. Medical advances over the last 20-30 years or more have meant that in some cases we simply prolong the existence of a suffering person. My own DM is, by some miracle, still alive but her quality of life (despite the best efforts of the wonderful care home staff) is negligible. So why is she still being prescribed an expensive demential drug to "slow the progress of the disease"? [Rhetorical question]

verygrumpy · 29/06/2024 15:22

OP - check whether there is a falls team in your area. It doesn't cost much, she wears an alarm and when she falls the team come out to her. It adds an extra layer of protection.