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@Cherrysherbet there should be a complex needs discharge team assigned to your DM at the hospital- please try to get to speak to them. That should include a social worker, I think, but if not please contact adult social services at your council.

Social services will be delighted you want to take DM home, but if you’re thinking you’ll try a couple of weeks to see how it goes, and it doesn’t work out, it might take a while to find an alternative. So I’d suggest you get “in the system” as soon as you can.

And please keep posting here

The hospital social worker who originally assessed my mum thought she had no nursing needs at all. Since 48 hours after she left hospital she's been on 1:1 nursing and things have only improvedsince she got to a specialist environment. I don't understand what their assessments consist of tbh.

Makes absolute sense Cherry. The assessment of her needs sounds quite wrong but I see exactly why you are where you are.

I wonder if a specific email or call(s) to the occupational therapists (leaving messages ++ until you do speak to them) would mean you could go in and be observed by them trying to move her on your own. It sounds incredibly risky.

Cherry speak to Age UK. My ILs have ground them to be very useful in finding help, financial snd practical.

Thank you minty

Don’t get me wrong, as much as I love my dm, we are very different people!

As I said, she is placid, but I can get stressed quite easily. She has always been the kind of person to let others do the work. In her job she was able to delegate, and did it well! At home, my dh and I have always done the housework etc…. Tbh she didn’t keep herself mentally or physically active, which has largely contributed to where she finds herself now. This was probably always going to happen, but I didn’t realise how sudden and soon it would be!

We are used to living with her, and she has always expected to be considered before we could go away. Didn’t want to be in the house on her own since my dad died 11yrs ago. She has always been quite needy! but I’m aware that this is a whole different level.

I don’t think we could afford respite. I’ll look into it, but because of her needs, I’m not sure we’d be able to get it. I am willing to work around things as much as possible though, to make sure dd still gets to do things.

I think we’ll know within the first couple of weeks if we can make this long term. I’ll give it everything, but will try to be sensible and realistic, for the sake of everyone in the family.

It will just be a relief at this stage to get her home, and to not have to worry about hospital visits!

I wish dm had the capability to be part of this decision. That’s what makes it harder.

We’ve had no support from anyone up to this stage. The hospital don’t communicate very much with us at all. We’ve had to try to figure all this out ourselves, and I guess that will be how it is going forward.

I feel drained and confused.

I’m glad I’ve found a place where others can understand how it feels. Means so much. Thank you for taking the time to help.

I feel like I have to live it to know that eventually a care home is the only option.

I can understand that, and there are many factors that may help in your situation:

The fact that you will be in charge. A lot of my stress was (and still is) caused by differences of opinion with my mum and her constant need for emotional support when I really wasn't in a position to provide it.

The fact your mum already lives with you and has plenty of her own space.

Your description of your mum is lovely. I often felt I would have found it easier to care for my dad without mum's stressing but she did do a lot of the practical stuff so I guess it's swings and roundabouts from that POV.

It sounds like your DH is supportive which must be a huge help. I'm divorced and if I'd still been with my XH he would have made the situation 1000x worse.

There will be good bits that make it worthwhile, but do try and engage with as much support as possible. I'd strongly urge you to look into respite options too, to give you a break a couple of times a week and maybe for longer so you can spend some quality time with your DH and kids during the school hols for instance.

Well I’ve just sat and read all your posts carefully, and I’m in bits.
What many of you have been through is exactly what I am expecting this to be like. I feel I have no choice that doesn’t lead to a lifetime of guilt.
To answer a couple of questions… it is our shared house we would be bringing mum home to. We have lived here for 34yrs (I was 14 when we moved in). My dh moved in when I was 18. She has a bedroom and lounge at the front of the house. The hospital bed and hoist have been set up since early November. We have waited day by day since then for the care package.

When she went into hospital, she was confused, but knew where she was. Now, she doesn’t know she’s in hospital. She doesn’t remember home, but there is recognition on her face when I show her photos of home. She knows us.
She hasn’t had a diagnosis of dementia, as they won’t do it until she’s in her own environment. She clearly has a type of dementia though. She has two teddies that she talks to, she thinks they’re real people. She gets very distressed at times, but is never aggressive or nasty. The staff love her! She is a real character, and very placid.

As suggested here, I could draw up a pros and cons list. I would have a whole list of cons and just one pro. The pro would be that mum would be home and in our care. There are no long term pros for me and the rest of my family.

I suffer with anxiety, and this goes hand in hand with overthinking everything. Over the last 5.5months of her being in hospital, there is not one negative point about her coming home that has not popped into my brain multiple times. I am already exhausted.
As she is only 76, this could be for the next 10yrs + That scares me to death.
She has been cared for by two people each time
in hospital. At home, when dh is at work there will be just me. I don’t even know if I can physically roll her over by myself.

The way she is atm in hospital is lying in bed 24/7. She was in a chair when she went to rehab, but after she had a gall bladder infection in October, they stopped the rehab and just left her in bed. No medical reason why she needs to be in bed. The type of armchairs they have don’t support her, and they don’t have recliners in this hospital.
Now they are saying she is starting to get a bed sore.
After Christmas, I had a wobble and almost agreed to her going into a home, but they made it clear they will not fund a nursing home, but a care home. I think her needs are too great, due to being bedridden and possibly developing a bed sore. So we went back to having her home.

The care homes in our small town don’t have good reputations. Others are 10+ miles away. She would have to quarantine for 14 days, and i know her confusion would be awful. If she can’t even get out of bed, will she just spend the rest of her life in a room on her own?? She has been in the same room in hospital since August, so she is settled. She spent 3 weeks in a different hospital at first, and they were so unkind to her. She went downhill so much. I can’t see her like that again.

I 100% know bringing her home is not the right decision for me, my dh and children. Everything you’ve all said is true, and I believe we are just about to make the biggest mistake ever, which is ridiculous. I’m definitely not going into it with my eyes closed, but I feel like I have to live it to know that eventually a care home is the only option.

Thank you so much for sharing your stories with me. IRL nobody is very honest! I have some good friends, who are very supportive, but they haven’t lived it like you all have. I appreciate your honesty. I have some really serious worries in my head about all this, and it helps to get it written down.

Just read everyone's amazing replies. No words, just sending a big hug

@MereDintofPandiculation hope all ok with you today.

I barely leave the house because I have been conditioned to stay at home in case she needs me. In many ways I'm a mess. But I will get better.

hairbrush you certainly harder than me physically. My mum, for all her faults, has always been practical and houseproud to the extreme so I didn't have to cope with the washing, cleaning etc side of things.

As you mention above though, the emotional toll is devastating.

@NewYearNewMinty your post brought tears to my eyes. You write so beautifully.

Hi @Cherrysherbet I am on the other side of the care situation now - my mum went into hospital in June and is now in residential care - she has dementia and severe arthritis.

Like you we lived with my parents - they lived in our garden. My dad died when mum was 76 and my youngest daughter was 11. Mum's mobility meant she needed care from me and support as dad and the family had been the focus of her life. I had to give her breakfast in bed, get her dressed, do all the cleaning and washing, shopping, take her anywhere she needed to go. I had to tell her when I was leaving the house and when I would be back. She also wanted me to spend every Saturday with her and every evening until bedtime because she was so lonely. That was nine years ago and of course her body deteriorated and slowly her mind did too.

Much against her wishes I begged for support from Social Services and in March 2020 we had a care package of two calls a day to get her up and put her to bed which made a big difference to my mental health. I had to pay towards the carers because in mum's eyes they were there for MY benefit, not hers. She didn't need them.

The pandemic masked things for a while but by the September the two of my daughters still at home had gone - one got married and the other left for university. My husband was back in work and I was trying to study for an OU degree and fielding up to 10 calls for attention every day - along with doing all the meals, washing, cleaning, sitting with her for an hour in the afternoon and all evening. She would also phone me in the early hours of the morning/late at night to complain that the carers hadn't been with her breakfast, unable to work out for herself whether it was 2.00 p.m. or a.m., even after I bought her a Grow clock and set it every night.

In June last year she had a fall in her bathroom. Thanks to support from the carer who called that morning she was taken to hospital for assessment. The next day I broke down completely and the next few days are a blur. I know my husband came home early from work because of the increasingly bizarre calls I made to him and my friend took me to hospital. After that I don't really remember much for a week.

On the advice of experienced and supportive friends we told social services and the hospital that we would not be providing any personal care and we would not be able to support her overnight (every call from her required me to go outside whatever the weather, down the drive and into her annex) but if she was able to mobilise from her bed to her ensuite bathroom or a commode and back into bed we would be able to manage with four calls a day.

Within a week they had assessed her and realised she could not get into bed by herself and she was referred for rehab. Once in rehab it was clear that her lack of mobility was not just arthritis but also dementia and she moved into a nursing home in October.

I am slowly coming to terms with my new life. I love living with my husband - turns out he is a decent bloke! I still feel guilt - guilt that mum is somewhere that she doesn't like, guilt that I have not been able to bring her home, guilt about missing so much time with my youngest daughter and guilt for being happy with the life my husband and I now enjoy. Seven months since she was at home and I still feel that anxious feeling as I check the tv schedules to see what I can put on the tv for her at bedtime. I barely leave the house because I have been conditioned to stay at home in case she needs me. In many ways I'm a mess. But I will get better.

Remember that your mum now is the best she is going to be. Caring is only going to get harder. I know it sounds like people are trying to put you off doing it and you have every right to do what is best for your family. I have no doubt it can be rewarding but for me it was exhausting and distressing and now the lady who is left bears very little resemblance to the mum I knew and loved.

Minty that is an incredible post.

Hi all, I’m so overwhelmed by all your replies. Thank you so much for taking the time to offer your advice. I appreciate it so much. I’m at work atm, but will read through all your comments properly this evening, and reply.

Many thanks again.

@Cherrysherbet sorry you have to join us. But please take heed of the experiences of the battle scarred vets on here.
And community care services are on their knees…… massive staffing issues. Don’t be fobbed off with promises of cavalry who will never come.

@Cherrysherbet

I've just re-read your post, and this reply I guess is something of an essay. I can't tell you what you should do, but as someone who has only recently been in your shoes and is still dealing with the aftershocks, here is a warts and all account of my experience.

Jan 2019 - dad fell down the stairs and broke his back in 4 places. 7 weeks in hospital/rehab then home in back brace. He was able to shuffle about indoor and manage the stairs, but suffered numerous issues that weren't technically related to the fall but only came about after. The impact on his mental health and confidence was also pretty bad.

Early 2020, his younger brother passed away and he took to his bed. Early April, at the outset of the pandemic, we were advised that he was to be put on the end of life care pathway...they suspected some kind of gastrointestinal cancer and a life expectancy of 1 - 3 months. We decided to keep him at home because of the pandemic and care home risks and restrictions.

It turned out to be 'just' frailty and he survived another 13 months, by the end of which he was blind, doubly incontinent, unable to feed himself and struggling to even drink without support (usually pureed food and thickened liquids), often confused and in pain. He couldn't be lifted without a hoist but found it uncomfortable so opted to stay in bed.

Like you I'm an only child, although my mum is still around she is not a natural nurse and we have a challenging relationship so working together to care for dad was incredibly difficult.

Carers 4x a day will not scratch the surface when you're having to clean up a wet/soiled parent/bed at midnight, or sitting with them for hours at 3 or 4am because they are distressed.

Mealtimes that would normally take 15-20 minutes can take up to an hour, not taking into account any special dietary needs.

He needed lots of movement to prevent bedsores and also because be frequent slipped down in bed and needed propping up, which was physically demanding. Even though he was tiny he was a dead weight and that's not easy to manoeuvre.

You will need space for a hospital bed as well as the hoist and any other equipment your mum needs...the likelihood is that your entire home will be turned upside down.

You will also be running your own home, plus all your mum's admin, appointments, dealing with all the numerous agencies involved with her care, managing her medications. There may be times that she injures herself or needs medical assistance outside of carers hours. I never thought I'd see the day I'd be administering suppositories to my dad, and became quite the expert in dressing wounds caused by him trying (and occasionally succeeding) to throw himself out of bed when he was confused and distressed. We couldn't move him due to his previous back injury and being unable to weight bear so on one occasion when he fell out we had to wait 4.5 hours for paramedics to come out and lift him back into bed.

Also bear in mind that the agencies will always put 'patients voice' first. I'm sure this is well intentioned but I have to say that as a carer I didn't feel mine or my mum's wellbeing was considered at all.

When we thought it was short term, we asked about dad being cathetered or having a daily suppository to try to regulate his bowel movements...against policy because of infection risk (even though he was dying already) or not without his consent, which he really wasn't in a fit state to give, but because he was lucid some of the time right up until the end he couldn't be declared incompetent.

If you haven't already you will need to get medical and financial POA in place as well.

We were given emergency meds to be administered by the end of life team...'just give us a call'. Several times those calls didn't actually result in visits.

There was, and still is, very little face to face support for carers due to the pandemic, so bear that in mind when considering the social and emotional impact caring at home will have.

Agencies such Macmillan and Marie Curie will only support with a formal cancer diagnosis, which we couldn't get even when it was suspected as Dad was too frail for investigative procedures. Our local hospice turned our referrals down 3x on the grounds that dad wasn't in need of significant enough care. Eventually I pushed for him to be transferred to a care home for last 7 weeks of his life as I was so terrified we would be unable to manage his symptoms at home or call anyone else to treat him promptly.

My parents live round the corner so I did get to go home for a break. It didn't prevent me being referred to the CMHT for self-harm and suicidal ideation, or currently being on triple the dose of AD's I was two years ago. I thought I had bad panic attacks prior to this but the ones I've had in the last 6 months have been beyond anything I've experience previously.

And I should add that my dad was the most easy going man and compliant patient you could wish for. We were incredibly close and I loved him to bits.

My daughter was 14 when dad fell. She's 17.5 now and more or less independent. I lost those last few of her relative childhood. I didn't have the bandwidth, energy or time to support her anywhere near as much I would have liked with her GCSEs and college choices. Thankfully we were close beforehand and by the grace of some higher power it hasn't damaged our relationship but it's certainly broken me and she's seen and heard things I would never have wanted her to experience.

My dad was 83 when he died. If your mum lives for another 7 years, you will miss your DDs entire adolescence and they need you now, especially girls I think, probably more than when they small.

I can understand you needing to give it a try. But I would gently but firmly suggest that if you do, you use that six weeks with the carers to consult with organisations such as Carers UK and Age UK, and look into care home options so you can be prepared for the eventuality that home care might just not be the best choice for all of you.

If you want more of a blow by blow account you're very welcome to search under my previous name MintyCedric, for posts on this thread over the last three years.

Tbh without it and my amazing best friend whi had supported me in real life, I think there's a distinct possibly I wouldn't be here posting this now.

I would suggest you take an objective approach, and draw up a 'pros and cons' list Cherry and see if you can work out why you think doing this yourself is the best option for you, your DM, DH and DD, Vs a professional care environment. You say you can't allow a care home to deal with her delirium, but I'm pretty sure they are used to that.

You would essentially be turning yourself into a full time carer for your DM, which is different to being her daughter. What about the impact that will have on your DH and DD? trust me on this, I have the T-shirt.

Tough choices to make.

Hello @Cherrysherbet. The advice here is golden. Ultimately there is no right answer, you just have to try to do your best for everyone - and that, most importantly, includes you.

I second what others have said. If you bring her home you will be on duty 24/7 in a highly stressful role with a bit of help. You will struggle to find the time and energy to spend quality "mother/daughter time". If she is in a home rented and qualified people will be doing the practical work and you will be able to spend your time chatting over a cup of tea etc.

I really need an editor, someone to stand there with a red pen and cut out my waffle. I wonder if they'd do my cleaning too if I asked nicely?

@Cherrysherbet At some point your mum will have care needs that are too much for you to manage. It's not about how much you love her, it's about what is possible in the long term. Carers come in twos and they get to go home at night, put their feet up and then have a good nights sleep. They have legal restrictions on their working week and holidays too. Family get none of this, you do a full day and then you do the night as well, seven days a week. Your mum is still young, can you manage ten or more years of what you are planning?

There's only you that will know when you reach the point of it being more than you can manage but you've got to be realistic about what you can do and the impact it will have on all the family. I know it's easy to say that you managed before and you'll manage again but she's not the person she was and what worked before will probably not work now. You, your husband and your children are entitled to have some quality of life and that is no less important than your mum's quality of life.

My mum took a few months to settle in residential care (dementia and a bad fall) but after that she said that she had reached a stage in her life where she was really happy. It helped that she didn't know where she was and thought she worked there, which for her was good because it made her feel valued. I thought it was a personal failure but I had to admit that they were better at care than me, they could get a doctor through the door at a time when I couldn't get them to answer the phone. They were always doing something (bingo, dancing, cuddling a charming dog, film afternoon) and after years of living along, mum liked having someone to talk to. As time went on and she continued to decline I knew that there was no way I could have managed alone or with carers four times a day but at the start I thought I could have done if I'd tried harder/sacrificed my life/given up sleeping.

Before she moves anywhere you need to find out what exactly is involved and be realistic about what that means for you. What might be possible with carers four times a day goes right out of the window when no carers are available. Whatever you choose you are going to feel bad about it and it is hard being an only child because there's no-one else to share the responsibility. (although I'll say it's easier being in sole charge than trying to involve a sibling who talks a good game but shirks responsibility).

Welcome @Cherrysherbet. You’re in an impossible position, but please keep an open mind about the care home. Your DM is relatively young at 76, so this could be an arrangement that goes on for 15-20 years.

Is your DM aware of her surroundings? Might she be looked after better by people experienced in providing 24 hour care?

My DM has been in a care home for the last 3 years. She doesn’t like it, so I still feel guilty about it, but when she went home she was miserable there too. Having her at my home was never an option, partly for practical reasons, but I didn’t want to put my children through that. My grandma lived with us for a couple of years (when I was 11 -13) and I didn’t want that for my children

I’m full of admiration for people who do take this on, and it may well be the right decision for your family. It’s wonderful to have a supportive DH!

Good luck

Hello Cherry. What a very tough situation. Giving up your job is a huge step to consider and I know the stress of being faced with these sorts of decisions. My mother is nothing like as physically dependent as yours but is in a nursing home as she has challenging behaviour. The staff are amazing with her and although I know she would never have chosen to be there, she is surprising us by how cheerful she seems. 💐 to you.

Hi Cherry, I totally agree with what's been said. Maybe arrange to visit a few care homes just to see? It's a whole new world but finding the right one is possible and my Dad really benefited from the social stimulation and expertise of the staff to meet his needs and keep him comfortable. It was important to me to be a daughter to him not his carer.

Cherry sherbet,
I would take Minty advice here as she left work to mind elderly parents.

I would look into care staff or a care home for her as from what you told us her needs are high and complex. Then if she is shouting out at night your going to end up with broken sleep.
If you mind her can you move into her home or would she have to move in with you?
If you leave work your down your income, lack the social aspect of work and long term it will effect your finances and pension. If you have a child she needs you also and as she gets older the expenses of bring her up will just get higher.
I know several people who have taken on this type of care and being honest it very hard. It both physically and mentally exhausting and it very hard to arrange some time off. It puts a lot of strain, stress and possibly money worries on your family.