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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:
NotTheMrMenAgain · 29/06/2024 18:52

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.

Yes, she is classed as having capacity and lives in her own home, by herself. She has just today refused to accept a care package the hospital social worker was trying to get her to accept - she refuses to allow even one carer visit a day let alone four. When I spoke to her on the phone and asked why not I got the same usual, angry “Because I won’t have strangers in my house, telling me this and telling me that!” So, that’s her (stupid) choice, which she’s allowed to make.

She has all the grab handles and zimmer frames the social care team could fit into her house - but she won’t use them as she’s supposed to. She has a fall alarm wristband which she always wears, the call centre phones me and if they can’t get through to me they call an ambulance. If they do get through to me, I just call the ambulance as I can’t physically lift her and after each fall she’s meant to go to hospital for a brain scan.

There are no other family members to visit her - they’re all either dead, elderly and unwell or in the case of her son, just don’t give a shiny shit. I’m a single parent and am hoping to start a new job soon, as I need to prioritise my DC and earn a living - I had to resign from long career due to amount of time I’d lost and important things I’d missed due to taking her to hundreds of medical appointments over the past 3 years. And frankly, it’s so soul-sucking and depressing that I’d rather put my head in the oven than have to visit her more often. I’m at the end of my rope here.

OP posts:
Greentreesandbushes · 29/06/2024 19:15

Can she afford live in care?

Nodancingshoes · 29/06/2024 19:27

Similar here although she has now accepted carers 3 times a day. It's my grandmother (98) and me and my sister are her next of kin. I absolutely support her right to stay in her own home but I am not able to be her carer, however much she wants me to be. I work full time and have 2 children at home. I will now be going in once a day instead of 4 times. She has also had to accept buying aids to help such as raised toilet seat etc..
I know she is upset about the money and I absolutely understand why but she has no choice now. Sending strength - I hope things get better for you.

MariaLuna · 29/06/2024 19:28

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!

Just put those people out of your mind, I guess they mean well but never been in that situation (yet). I have, single mum too. It's really hard (both parents).

Get onto social services and let them know she can no longer be left alone. Do you have siblings helping?

It's like being on a flight. Put your own on before you can help others.

There's an outstanding pressure out there that we women have to carry all of the load.

caramac04 · 29/06/2024 20:04

We had similar with FiL. DH visiting 4 times a day, I accompanied him on 3 of those visits.
in the end I was bad cop and told FiL that DH needed a break and that he FiL was going into respite care for a week. I was a broken record and he had to agree. I said DH could not carry on without a break.
We did agree he could come back home, from the very lovely care home and we stuck to that. Fortunately, FiL recognised that he actually felt safer in the home and only had 2 nights at his home before going back to the care home. He passed some weeks later but had daily visits and very very good care.
I hope you can get some resolution quickly. Look into respite care, may be enquire at that new home and get the social worker to tell you mother she is going into respite. Hopefully that can become permanent

GillySoose · 29/06/2024 23:17

Greentreesandbushes · 29/06/2024 19:15

Can she afford live in care?

RTFT!

Sugartreemumma · 29/06/2024 23:21

Please put yourself first and dont let her crush you anymore OP.

Cantileveredy · 29/06/2024 23:32

Could she choose to stop any meds if sheis palliative anyway, to speed things along?
if she doesnt want care or care homes etc

Kitkat1523 · 29/06/2024 23:36

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

Edited

But DM has capacity so has the right to make her own decisions ….including unwise ones…..even if OP had POA she wouldn’t be able to make any demands if her DM still has capacity……are you missing something here with your post?

Agii · 29/06/2024 23:42

I know this is unpopular opinion, but it the assisted dying was legal by now, anyone, just like your mum could leave this world on their own terms, not suffering. I'm sorry about your mum. I am carer myself and have come accross a few refusers, she needs someone who avoids pointing out "I'm here to help!" And have a friendly approach until she accepts it. It's hard to lose all independence 🥹

NotTheMrMenAgain · 30/06/2024 18:18

MASSIVE DEVELOPMENT!

So DM was taken home via hospital transport last evening and then at some point in the night fell out of bed - no idea how when there are safety rails - and spent time crawling around the house, trying to use various things to hang onto and pull herself upright. This did not go well, and the stress caused bladder and bowel accidents - it all got very messy!

I must have been very soundly asleep, as I woke to umpteen missed calls from DM and the fall alarm company - have never slept through them before!

By the time I got to the house an old family friend - a sprightly chap in his 70s - had answered her distress call, picked her up, helped her clean up as best he could and cleaned up the downstairs mess, before he had to leave. He’s been a good friend for many years and I think of him as ‘Uncle’. We’d been messaging about the situation with DM the day before, so he knew what hd been going on.

I went in prepared for hours of carpet shampooing and a massive argument about the carer visits. I literally could not believe my ears when I started banging on about the carers and DM said “Well, I’m going into a home. ‘Uncle’ says I need properly looking after and I need to go to a nursing home, so I will!”

I gingerly enquired as to whether she was off her face on pills and booze, and was throughly slapped down. I said the house would be sold and she said yes, so I’d better start deciding if there’s anything I want to keep.

I was looking at her like “Who are you and what have you done with my mother?!”

She sent me off to get her some shopping, so that tomorrow (her usual shopping day) can be spent phoning nursing homes and arranging for visits. I sobbed with relief in the car and while I was at the supermarket the hospital social worker phoned me as she was so worried about DM. She basically said “Thank God for that” when I told her what had happened - she wasn’t expecting DM to last much longer if she carried on as she was.

I think I wandered the supermarket in a state of
semi-shock, bought a variety of random things I didn’t need. When I got back to her, DM had fired up the laptop and was ranking homes based on important criteria like
size of TVs in bedrooms, availability of freshly
made cake each afternoon and on-site chiropody and cinema rooms - so it seems like she really is set on it!

I simply can’t get my head around it! I know it’s not the end of problems, there will always be different issues to deal with - but at least she’ll be safer, looked after and have people to chat with.

OP posts:
Sugartreemumma · 30/06/2024 18:22

God bless 'Uncle'😇

NotTheMrMenAgain · 30/06/2024 18:31

Sugartreemumma · 30/06/2024 18:22

God bless 'Uncle'😇

There’s a really good bottle of wine waiting for him! Can’t thank him enough.

OP posts:
Sugartreemumma · 30/06/2024 18:50

I think our elderly parents look at us & see a disobedient 6 year old, that's why they dont listen to a word we say!

Changingplace · 30/06/2024 18:54

Oh this is a great update, sorry it took another fall for it to sink in but it’s a blessing in disguise that you slept through and Uncle arrived first, hurrah for his straight talking!

Hope your mum can be settled in a lovely nursing home in front of a massive tv with a slice a cake very soon :)

NotTheMrMenAgain · 30/06/2024 21:50

Changingplace · 30/06/2024 18:54

Oh this is a great update, sorry it took another fall for it to sink in but it’s a blessing in disguise that you slept through and Uncle arrived first, hurrah for his straight talking!

Hope your mum can be settled in a lovely nursing home in front of a massive tv with a slice a cake very soon :)

Edited

Thank you 😮‍💨

OP posts:
caramac04 · 30/06/2024 21:54

This is the best possible outcome for you an dm. Great update.

alexdgr8 · 30/06/2024 22:19

i feel as if i know your family and was getting quite concerned !
do let us know how you get on, if you can bear to do so !
all the best OP.

Mischance · 30/06/2024 22:59

Probably the embarrassment of a neighbour having to deal with her double incontinence will have pushed her into rethinking her situation. Thank goodness.
My late OH was in a wonderful nursing home.
I hope she finds the right place for her. Sounds as though she knows what she wants!!!

saraclara · 30/06/2024 23:18

Sugartreemumma · 30/06/2024 18:50

I think our elderly parents look at us & see a disobedient 6 year old, that's why they dont listen to a word we say!

No.

It just sucks getting old. To have to leave our family home and all its memories. To part with almost all of our possessions and the memories they hold. To no longer have that independence, to be in charge of our lives, to do what we want when we want. To make our own choices. To realise that our bodies and minds are failing. We fight against it. If course we do. If you had to give up all of that tomorrow, you'd fight too.
Sometimes the fight goes on too long, which is hard for all parties. I went through it with my mum.
But it's not about seeing your offspring as six year olds. It really isn't. It's just an awful realisation that your life is on the wane.

Have some empathy instead of being so glib. It'll be you one day.

Sugartreemumma · 01/07/2024 00:11

saraclara · 30/06/2024 23:18

No.

It just sucks getting old. To have to leave our family home and all its memories. To part with almost all of our possessions and the memories they hold. To no longer have that independence, to be in charge of our lives, to do what we want when we want. To make our own choices. To realise that our bodies and minds are failing. We fight against it. If course we do. If you had to give up all of that tomorrow, you'd fight too.
Sometimes the fight goes on too long, which is hard for all parties. I went through it with my mum.
But it's not about seeing your offspring as six year olds. It really isn't. It's just an awful realisation that your life is on the wane.

Have some empathy instead of being so glib. It'll be you one day.

No.

caringcarer · 01/07/2024 01:05

If she won't go into a nursing home and won't accept carers coming and going each day would she accept a single carer living in with her? It must be a nightmare for you to have all the worries about it all.

SierraSapphire · 01/07/2024 06:39

Have some empathy instead of being so glib. It'll be you one day

I'm sure it's really difficult, but telling women whose lives have fallen apart because we've had too much empathy and supported our elderly parents to the expense of ourselves and our DCs isn't helpful. And it won't necessarily be us in this situation, plenty of older people make decisions earlier or later to move into more suitable accommodation so they are not so isolated or to have carers to take the pressure off their children, primarily middle-aged daughters.

Many of us on these boards are in desperate situations with DPs who appear to have absolutely no empathy with us, in my case whilst I was going through cancer treatment but she was still expecting me to run around after her and put my own health at risk. For some of our DPs this may be due to cognitive changes connected with being older, but for many of us it is a lifetime pattern where we had to meet their needs as children as well, which adds an additional level of distress for us.

Soontobe60 · 01/07/2024 06:48

NotTheMrMenAgain · 29/06/2024 18:40

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!

I would suggest that this isn’t always the case. My MIL to all intents and purposes had full capacity, however she was in complete denial about her fall risks. She was hospitalised several times, sent home with a care package only to fall again within days.
Eventually she was assessed at a MDT meeting to have limited capacity as she either could not see how risky her choice to return home was, or that she even needed support. She went into a rehab unit and from there into a care home. She just wasn’t allowed home.

BlueLegume · 01/07/2024 06:52

@saraclara its untrue that we lack empathy. As @SierraSapphire said some of us many of us have had a lifetime of trying to live up to what our parents, often mothers, demand of us. In my case nothing has ever ever been right from carrying up teapots of tea in a morning as a 5 year old in the hope ‘mummy’ might wake up not grumpy, to cleaning the house as a teenager in the hop ‘mum’ might be okay with me going out, to having the wedding ‘mum’ decided I coiuld have not the one I wanted. So forgive me for rejecting the comment about being glib. My parents deliberately ignored suggestions that would have been useful to them, us, and healthcare professionals. They walked into situations where help was offered and they refused. My father even questioned whether his consultant knew what he was talking about’ when diagnosed with his illness. They both then refused to engage with any clinicians who could have explained the illness and provide guidance as to how things progress. Glib we have not been - desperate is why we are on here.