Having mother home- I feel guilty.

[speakout]

My 89 year old mother has lived with us for 6 years, but had a stroke 3 weeks ago, she is still in hospital on a stroke ward, it could have been worse, but looks like she has lost a lot of mobility and strength in one leg. The care is great ( NHS), she as daily physio and taken to a specialised "gym" in the hospital. Her mobility is improving, but slowly and she can't yet walk without a frame and staff, needs help to get to the toilet etc.
I am terrified about the next steps. My family is pressuring me to have her home now as soon as possible but I can't sacrifice my life like this. We have narrow winding stairs and could move her into a room with a toilet next door, but am guessing she will still need supervision including during the night. I will be having to cook, bring trays of food, and I feel afraid of the impact this will have on my life.
I work full time from home, and I also care for my adult son who has severe mental health problems, situautions with him can often mean night wakenings for me ( he is at times at risk of suicide).
My OH sister and daughter feel my mother would recuperate faster at home- and that may be true, but I would worry about her safety, I would need to learn how to handle her, how to help her shower and toilet etc.
Interesting to note that those family members urging me to have her home are not the ones offering care.
My sister lives abroad- long haul fight- and last visited home eight years ago. My OH works full time- long hours and travels a lot, so is gone two weeks out of every four. My daughter lives in her flat 40 minutes away but also works full time, and has a part time job too ( which feels more like a paid hobby than work) but nnot a lot of spare time.
I tried to have a conversation with my OH last night about the situation, but after listening to me said " I think you can get special chairs, you would manage somehow" I was just in despair that he wasn't listening to me at all, and took myself off to bed early where I lay crying for an hour.
It all feels so hard, I feel very alone, and guilty for just not wanting to suck it up.
Any words of wisdom would be appreciated.

one of the siblings ( male as it happens) lived with them and did that to the detriment of his own ability to live his life
I think this will be the fate of many of todays youngsters who are unable to afford to leave home...they will be 'captured' by the elderly parents and never have lives of their own

Also, purely practically, hoisting a toddler onto the changing table and pushing them round in a buggy is much less physically demanding than changing, cleaning and helping a heavy adult.

Especially if the adult is non-cooperative as a result of dementia or a stroke.
It becomes impossible sometimes to give any personal care without being assaulted.

Less physically demanding and the carer is a good 30 plus years older than parent of toddler

She should be eligible for step down care /rehab unit as a half way house between hospital and home, and/or carers going in. (Though that can be hit or miss in itself) make sure she is assessed for this on the ward.

I’m on the cusp - no longer with children at home, and with friends in their 70s and 80s. There are some selfish parents around, but most did their best according to the norms of the time, just as most of today’s parents are doing for their children. I know we all think we are good parents, and we will never allow ourselves to become a burden to our children, but I wonder?

Just found and read the thread OP. Very glad to hear your mum has made such a good recovery even if has created other problems. I just wanted to say that I hope you get the physical support you need and you maintain this new level of self assertion.

I'm sure you've told your son already that you are grateful for his support and thoughtfulness. He sounds lovely albeit a challenge. Everyone likes to feel useful and valued though so if you haven't I would urge you to. Support can cut both ways.

Your OH, words fail me and as that's a whole other thread I'm not going to comment. You have enough on your plate already.

Your daughter sounds sweet if naive. You should explicitly ask for her support. Popping in to visit and staying for dinner is not the same as being "on point duty" with your mum for 48 hours.
Even with carers.
Pick a weekend once a month when your husband is home, if finances allow and leave them to support your mother and son respectively. It would do no harm for them to walk in your shoes. Visit a friend, check into a hotel, volunteer to build walls in the Welsh mountains. Whatever floats your boat and will give you some mental respite.

This is very true.

My experience with my mother was complicated by her narc tendencies and her dreadful parenting but she always used to comment on the ‘selfishness’ of others who expected their adult children to become their carers. She often said to me that she hoped I would tell her if she wasn’t coping and ensure she made the decisions in order that, “I’m never a burden to you”

However when that time actually came, she was completely resistant and confrontational to my suggestions and help. She was struggling to cope in her own home, hoarding, not taking medication and I knew she wasn’t eating properly. I arranged for meals on wheels, carers to check on her and to do her tablets and a weekly trip to a group to play cards - which she always previously enjoyed doing. She refused to let the carers in, told meals on wheels they weren’t good enough for a dog and sent the minibus away, telling the driver that she had other plans for the day. I spent most of my time either on the phone to the different agencies sorting things out or persuading mother that she needed to let the carers in and she needed to take her tablets.

Eventually, I had to tell her a “love lie” and that we were going out to visit a friend. Whilst DH chatted to her, I had packed a case and got it in the car and we took her to a lovely care home I had prearranged. She would never have agreed to it had I asked her and she kicked off majorly once she realised what I had done but the staff were brilliant in distracting her and once she’d settled down after a few day, she loved the attention, being waited on and chatting to other residents.

The relief and easing of my anxiety was incredible too. I hadn’t realised how on the edge I had been living too. The stress of what she was or wasn’t doing was enormous because every time the phone rang before she went into the home it was inevitably about her being non compliant or her demanding I sort some sort of incident out, no matter how trivial, despite me living nearly two hours away.

Please, please look after yourself over this one @speakout If others can offload onto you and you ‘appear’ willing, you will carry the burden alone and that’s not right. Don’t let others guilt trip you into a carer’s role. I know from comparing experiences on the other thread that our two mothers were scarily similar. Unfortunately, once cognitive decline sets in, those personality issues that were hard enough before, become more focussed and to the fore. My mother became more vicious with her tongue and her unfounded accusations could be very hurtful and damaging. X

@JohnPrescottsPyjamas I’m glad you found a suitable place for your mother. I’m afraid she sounds like my own late mother.

It can be hard to accept that selfish, demanding and manipulative people don’t usually have a personality transplant when they become older.

It’s easy for social or care workers or well meaning family to come up with a plan that says “ Mother will do all these activities Monday to Friday because we are all out at work and that suits us”. But if Mother has always insisted that everyone fit around her and has never fitted in with anyone else’s plans before, she is not going to start now.

If she’s been manipulating her loved ones for 80 years is he will go on doing it. So if that involves sending away the church minibus driver because she believes it’s her family members job to take her, she will do that. Then sit and cry at home because she is lonely. Or have a pretend fall or turn that means someone has to rush home from work. Especially if they WFH ( so it’s not really working and it will only take 5 mins )

I’ve known so many elderly parents work hard to thwart every single plan that was put in place for them, in the belief that this would force their family member ( usually a daughter or DIL) to do what their wanted.

Of course anyone has the right to refuse to participate in activities / cooperate with carers etc. But with that right comes the responsibility to live with the consequences .If you’ve got your own way all your life that can be a hard lesson to learn.

How are things going, OP?

My Mum had a stroke in September 2020. It affected Mum’s speech, moods and mobility. The sister that she was renting a a house with drove her out into the street into an ambulance, threatening that she would hurt her if she remained. Mum was admitted to hospital as a safeguarding case was opened, where she soon caught Covid. We couldn’t visit due to Covid restrictions but I tried to have a FaceTime call with Mum every day on her tablet so she could see a friendly face, although the stroke took away Mum’s speech so it was heartbreaking. I live 160 miles away from her too. My heart screamed at me to take on Mum’s care and move her in with us, but we live in a little cottage with winding stairs and one upstairs loo. However, if I had really wanted to, I could have ignored my 74 year-old husband’s concerns about how we would manage, and taken her in. My brother sent me a message saying ‘shame on you!’ although he has a spare bedroom and lives close to where Mum was. My sister, who is a nurse, and my daughter also thought I should have moved Mum in with me. I should mention that I was physically and emotionally abused in childhood and the thought of Mum getting angry and shouting at me (which she did after the stroke when I tried to care for her) frightened me.
Mum spent 3 quite unhappy years in a good care home where we visited regularly and took Mum out in her wheelchair for walks and nice lunches. She died in August 2023 - I sat with her, holding her hand, telling stories, playing favourite music and singing to her from 3.30pm until 0930, her time of death.
I am racked with guilt and keep thinking that if I had cared for she would have had a better quality of life and maybe a longer life.
I don’t think there are any easy answers. I would have had to give up my job as well as move house and my husband’s life would have changed drastically as well as mine. But perhaps I wouldn’t be as distraught as I now am, at times, when I feel like a bad daughter for allowing my mum to have her freedom taken away.
Sorry this is so long! This post must have hit a raw nerve. Perhaps I need a therapist…

@Gabi4 I am racked with guilt and keep thinking that if I had cared for she would have had a better quality of life and maybe a longer life. My Dad was very "independent" and lived on his own well into his 90s. But in later years he became erratic in his habits, in particular not taking tablets - I kept a spreadsheet of his prescriptions and how many tablets he should have left, and when I did a count of his remaining tablets he'd have 30% or 50% more than he should. This led to an increase of symptoms then eventually hospital and then nursing home. It was very clear that he was better physically in a nursing home.

Could I have looked after him better if I'd had him in my home (ignoring his ability to manage steps) Maybe, but not well enough. He could easily spend 40 minutes taking his tablets, then he didn't much like our food, so I'd be cooking separate food for him. I'd have had to have carers in for personal stuff, then there's the night time stuff. And he talks! And worries! I would have been worn into the ground, and we would have driven each other mad.

It is not possible for one person to be on duty 24 hours a day, every day of the year. You would not have been able to look after your mother's basic needs so well as the care home do. Quality of life isn't just about having loving company around you, it's also about having your basic health needs met, and the home will have done that better than you could.

Thank-you for such practical, matter-of-fact observations. I’m very good at beating myself up, and your wise words make me feel not as bad.

Oh lovely you did nothing wrong
You made the right call.
What you did for your mum at the end was beautiful.
Your mum reaped what she sowed
She was lucky you were even speaking to her after the abuse.
And as for your brother....at least you could see is double standard...
I repeat you did nothing wrong ...maybe therapy would have , but regardless go live your best life , you deserve it.

@Gabi4 you did really well. @MereDintofPandiculation is right, no one person can do 24/7 what a range of staff at a care home can do. The best relationship in the world with a parent doesn’t change that once they are dependent in the way your mum was.

You need not feel guilty. Sending

@SheilaFentiman Thank-you for your kind words. Yes, the care home staff did look after her and Mum had a good relationship with them on the whole. I should have mentioned that the abuser was my evil father but Mum was powerless to stop him. His violent moods were unpredictable and the target for hitting, kicking and insulting was mostly me out of the 5 kids, and to a lesser extent, the brother I mentioned before. My sister was adored and he didn’t ever hurt her. It’s just that it leaves a scar, and I still can’t deal with being shouted at, even after all these years, so when Mum got angry at me when she first came back from hospital, I didn’t react well to it. Thank-you again for bothering to respond and I wish you well.

@TammyJones Thank-you for your message. It means a lot, when people have judged me, to hear that others believe differently about it all.

@Gabi4 this isn't your fault and you've done an amazing job! Please please don't feel guilty!

Even if your father was the abuser, your mother enabled it by not stopping him or intervening. She wasn't powerless, although maybe she felt like that and there was much less knowledge/awareness of abuse then. She had a choice.

@EmotionalBlackmail Thank-you so much! There is a lot of wisdom in your message and I have often thought the same. I certainly wouldn’t have let anyone hurt my children.
All the best to you.

@Gabi4 good, I'm glad it helped.

There are several of us trying to break the cycle and consciously parent our own children differently to how we were brought up.

And nowadays social services would get involved if someone was experiencing domestic abuse but not protecting their children. Yes, it's desperately difficult to leave an abuser but social services can and will remove children if the abused person fails to protect them.

Hello,this is the first time I’m writing on a message board like this but I could really do with some advice, support or maybe just some words of wisdom.

my mum had a massive stroke 6 months ago, 2 years before that she had her first stroke and recovered relatively quickly. This second stroke is a different story. She has left side partial paralysis. She is mobile but balance is not great. Mum was in the hospital for 6 weeks before she was discharged. I moved my family out of our home, left my job to become her full time carer.

I have 2 brothers, one lives in Canada and the other one lives just over an hour away but refuses to help.
everything is on me, cooking, cleaning, looking after my 3 children one is 11 and twins who are 7. If I go anywhere it’s with my mum, I take her out everyday just so I don’t have to be at home with her and repeat myself constantly. She went from being super independent to not be able to do much for herself even though she does try. My husband is so unhappy, my kids want to go home and I have become irritable, angry and it’s hurting the people I love.

I love my mum, I left my children for months to take care of my mum and dad when mum had her first stroke and my dad was seriously ill too. He passed away nearly two years ago. The responsibility was all on me and it was too much to handle.

I've come to the point where i cannot function anymore. Nothing makes me happy.
I never wanted to put my mum in a care home but right now I feel like I don’t have any option. My health is deteriorating and I’m not the best person to care for her but the guilt is eating away at me for even thinking of such a thing.
im Indian and in my culture we take care of our elderly parents but im doing it alone, i dont have any support from my older brother, my younger brother has been over twice from Canada to help but how much can I expect from him being so far away. I fear the judgement from everyone especially when people say “you’re such a good daughter, mum is so lucky to have you”
“ you’re doing the right thing by looking after her”
my whole life has turned upside down but people forget that. When I hear other people’s problems then mine seem inferior but im still hurting inside. Why couldn’t I cope? I feel useless like abandoning my mum after everything she’s done for me. :(

@Lachatt I’m sorry to hear about your situation it’s sounds very tough. But you need to start your own thread as this one is about someone else.

Amd anyone who clicks on it will be answering their problem and not yours.

If you click on the “ report “ button at the bottom of your own post you can message Mumsnet and ask them to start a new thread for you .

Hello,
Please call social services and self refer, tell them you are in carer burn out and that you urgently need support.That you are unable to cope any longer with the demands of caring for your mum and balancing your family life.
They have a duty to help keep your mum safe and allow you a break either in the form of respite or carers.
You need to go home.
I think you've done amazingly, but you need to look after yourself and your family too.

Please don’t feel guilty. (Easier said than done, I know!)
There may often come a time when 24/7 care - by which I mean someone on hand all day, all night, 365 days a year - is needed, and that is virtually impossible to provide in an ordinary domestic setting without family doing their best suffering from utter exhaustion.

If you have room for, and funds for, at least two carers on shifts, that is an option, but we looked into that for a relative of dh and it worked out rather more expensive than a nice care home.

Maybe suggest your sister flies back and helps you find a care home and work out finances ? Tell her you need some support.