Dad dying, how to cope with Mum

[MintyCedric]

I was on here about a year ago after my dad had a bad fall and broke 4 vertebrae.

To cut a long story short, although there was no spinal cord damage and we got him home after 7 weeks, he never really recovered and his health and wellbeing has been on a downward trajectory ever since.

Shortly after lockdown he became largely bedridden (other than going to the bathroom) due to weight loss and lack of strength/balance. Verdict of 2 x GPs and practice nurse is that it's likely he has some kind of late stage gastrointestinal cancer and a prognosis of a couple of months at best.

Over the last week has been struggling to get to the bathroom (he has a commode and portable urinals in his room.but I've had to hold him up to use the latter. Today he made it out to the loo but I had to lift him off it).

Mum seems to be somewhat in denial and is not really managing to make any decisions about equipment and carers, and emotionally is utterly exhausting.

I'm visiting them almost daily, sometimes for several hours or more than once, but feel I'm spending all my time propping mum up. I want to be supportive but I'm also trying to work from home, keep an eye on 15yo DD (who is great but starting to forget what I look like), keep my own home/paperwork under control and look after myself (which is frankly a lost cause).

I feel guilty as hell for both resenting Mums demands on my time and brain space, and also because I'm dealing with the dad aspect on autopilot and have barely cried or even begun to process the situation.

I imagine my mum's emotional demands will only get worse and feel like my life is basically going to be over for the foreseeable future. I'm terrified I'm going to have give up work and my home to care for her and although I love her dearly, we are like chalk and cheese and I just don't think I could cope.

Put your guilt back in its box, you are doing your absolute best for everybody, nothing to be guilty about.
Your Dad is in a safe place and being cared for, that is the most important thing. Your Mum has nothing to do but fret, and you bear the brunt, that doesn't mean you are in the wrong.
Find your cats and have a cuddle.

I have been on the receiving end of FrostyMum. I was immediately back to being a frightened little child who would have been sobbing in my room thinking of the consequences of her displeasure. I'm not that person anymore, times have changed, now she only has the power that I give her. What's she going to do, send you to bed early? Give you bread and water for dinner? Stop you watching tv? Maybe she'll stop talking to you and wouldn't that be lovely?

You are an adult now with your own responsibilities and right at the moment you have the power in this relationship because you have something she wants. I'm going to ignore the dangling carrot of future money, you are going to sort out a pension when you can and not care about it. So what if she's upset - you are upset and her feelings don't get to trump yours. Yes she's worried about the future - so are you. You shouldn't have to live your life pussyfooting around her feelings, if this was a M/F scenario it would scream "abusive relationship".

Your job is your armour, as a single income household you cannot afford to jeopardise your career especially just now with the economy contracting. You have to be clear that you cannot continue to support the at home option as you have in the past. It's back to work now and you simply cannot do it any more. Whatever choice your mum makes, she's on her own to deliver.

Weirdly my mum was fine when I was a kid, it was only when I was in my late teens that her behaviour started.

She has severe separation anxiety and a fear of abandonment and it was only when I started to become independent that she started with the emotional blackmail etc.

A previous counsellor has said it's entirely understandable that I ended up in an emotionally abusive marriage. I've also had transactional analysis therapy in the past which is about the whole parent/child dynamic. I think I might need to revisit those theories as it was really helpful at the time.

I'm going to start a pension next financial year when my divorce/moving debts are finally paid off. If I'm eventually able to get the better job I'd like I'll be in a position to put more in, and if push comes to shove, I've equity in my house, and I'll retire to a nice little park home if necessary so I've got some spending money!

I still haven't heard from her, so am going to go round as planned.

Sounds like a good plan Minty. I think how your mum reacts to your email will tell you all you need to know. If she turns all you said into 'yes, but what about me,' I think it gives you a very legitimate reason to seriously distance yourself, as she is showing she only cares for herself and nothing you say will change that. Hopefully it will give her food for thought and she replies in a positive way. If she ignores it, make sure to say 'I hope my email showed you how I'm feeling and how I need just as much support as you.'

I know you feel guilty, but please try to see that this is a toxic relationship and you would not be wrong to distance yourself. It's not your job to fix her. You've tried to support and she has been completely ungrateful. She is the parent. She has to step up, just as you have. Hope today goes ok.

Great advice here. Good luck today. Protect yourself.

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You describe your Mum like jelly and I've tried to explain that she's an emotional vampire - she will literally bleed you dry!

Her fear of abandonment does not make it acceptable to try and suck you dry. Even if you did abandon her she would actually survive and be ok!!!

Rock solid boundaries because your & DD futures matter.

I don't know if this will help you as I think you are a far more empathetic person than I am, but I try to distance myself, regard the person as a lab rat, try one way of behaving and see what the result is. I regard it as a behavioural observation and record it in my imaginary lab book, but I don't let it influence how I judge myself about what I'm doing.

You don't need her to validate what you are doing. You made a valid decision based on weighing up her needs and yours - don't allow anything she says to make you question that.

You're doing a lot more than most of us would do - keep talking to us and be reminded that what you are doing is above and beyond.

Great advice all, thank you. LMAO at the lab rat analogy.

So this morning has turned out to be another kind of shit show all together.

Called CHC who said they were happy to continue with full funding at current home for the forseeable.

Went to mum's 45 minutes prior to appt, much calmer, had a coffee and a chat, pretty much on board with him staying in home.

Arrive at home (to find dad in armchair on wheels on his way out to sit in the garden) and sit down with the two senior nurses who announce that they've asked him how he feels and he has stated he wants to come home. Because he has capacity they have to accept his decision, and will speak to CHC about putting more care in place, possibly a couple of longer sessions/overnights.

We look at them in abject horror. Go and have a chat with dad who does indeed want to come home despite all the problems it presents. In an hour there we try and discuss the pros and cons and he changes his mind 5 times. We have gotten nowhere.

Have had to leave it that he will come home next Monday and may need to be downstairs or we'll have to get a stairlift for mum (she's not thrilled about either plan but seems willing to discuss it).

Having asked the home if we could extend his respite for a week or two and see how he goes, they seemed pretty reluctant, so have been onto CHC who are happy to fund, let home know and if Dad agrees he can have another couple of weeks there.

This means mum can have her knee x-ray and we'll know what we are doing on that front, and hopefully with a couple more weeks he might adapt and change his mind about staying.

Feel better mentally today but God it's relentless.

In other news, R, the 'invisible' Community nurse, who called us both yesterday told me that dad might not get continued funding for the home he's in as he 'doesn't need nursing care' and told mum (or implied) ten minutes prior that she was surprised he was still with us.

She hasn't seen him for two months!

You are certainly being put through the mill !
Please look after yourself. There are two important people in your life - yourself and your dd. Remember that.
You have no moral obligations to your parents , you have ( with a massive help from your mother ) given yourself emotional obligations. Remember that.
You have two parents who are still together , and both have capacity . Your mother is doing whats right for her , and what and suits her. Your father is thinking he will come home because thats what your mother wants and had probably been groomed by her to accept those things.
You realise it's in no-one s best interest for him to return home.
Here's the important bit , so listen and take it in. They can do whatever they choose to do , their decision . You know it will be a disaster , but that is their decision . Let them do it . Do not partake in any shape of form in any help, any assistance to help him to toilet, get back into bed after any fall. Nothing. You not allow your mother to phone you with woes or crys for help. If she phones, advise her to call social services , Dr , ambulance, not you, you are not available for that.
You would visit to be a daughter, full stop. A chat and a cuppa , read to your dad etc .
Remember you are entitled to a life , your dd a mum who is there for her and not one ear listening out for a phone call. You deserve to spend a day off work, bumming around at home in your pjs if you wish or off for a long lunch with your friend .
Lastly, remember the saying - They've made their own bed, and let them lie in it .
You are doing this for yourself.

Oh good Lord.
Re your mum, when she comes out with a shitty comment, call her on it.
"You don't care how I feel"
Well mum I find that extremely upsetting I've done nothing bout be there for you and dad. I can't be here 24hrs and you'll have to accept that. If you continue to upset me, I'll have to come round less"

Re your dad, push for a few weeks for him to settle in and see how he feels and for you all to benefit from respite. Push the fact that mum is struggling to walk, you're back at work soon so cannot be a carer

Minty
I can only support exactly what Victoriabun has written.

You will have to practise your very best - "I'm sorry that doesn't work for me" at regular intervals.

Presumably your DF could know what he wants with no "grooming" from his DW?

I've found a web page re local adult social services where you can register if you are an unpaid carer and give details of what going on and what support you need so may do that as GP mentioned social services and an allocate SW about 3 months ago and we've never heard anything.

VictoriaBun said all that needs saying. They make their choices and deal with the consequences.

You are not going to be a carer, unpaid or otherwise because you are going to be back to work full time, running your house and looking after your child and cat.

Minty stop!
You've gone straight into solution mode. Your parents are creating a mess and you're leaping to fix it. This dynamic will take time to adjust but you must break it.

Let things happen. Let them fail. Your parents never realise the full consequences of their decisions because you pick up all the pieces. They probably don't even give you the credit for it. Just step away. I know it's painful to think about, but remember how desperate you were yesterday. That was only yesterday. Put yourself and your daughter first. Social services will not offer extra help if an adult daughter is there managing the situation. Take it from someone who's been there. Leave them to it. Be unavailable. It will be hard at first but you must, for your own sanity.

Oh Minty I agree with @Candleabra you're just carrying on as you were. You have to stop. On what basis did the home think it was acceptable for your dad to go home with just your mum there? She can't cope and you'll be at work. Was this made clear to your dad? I can't see how it can possibly work without you going back to square one? You will have to turn your phone off at work because I can see you being besieged by everyone because you never say no. You cannot lose your job over this. Please step back for your own mental health.

On what basis did the home think it was acceptable for your dad to go home with just your mum there?

Honestly I think they want him out because mum was stroppy last week when she was stressed about him going in and they don't like the fact that one or other of us visits most days.

There were comments from the senior nurses along the lines of "Well you were adamant it was just respite when he came in last week and you don't seem happy with what we're doing so..."

I'm not excusing her behaviour at all, but surely it's not that unusual for people to be anxious when their loved one goes into residential care for the first time, or for them to want to visit more frequently.

Does anyone know/think that if we got social services involved and explaine dthe situation they would just say 'don't be ridiculous, it won't work, he's staying put'?

Your dad needs to be clear what he wants and it’s implications. Afraid it is his decision, whatever that means. It does not mean you become a carer.
Stress to him and your mum you cannot do it. Make sure everyone else knows you are out of the care equation.
Sw could help talking to him and your mum. Settling in takes time.
And you may need to butter up the staff.
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I would ask the staff how they think Mum can look after him on her own bearing in mind you are back to work and will not be helping out anymore as you are too unwell?

It's ironic that your Mum does recognise and has admitted he is better off in there and she can't cope... your Mum can refuse to have him back by stating she can't look after him and the carr package that has been offered won't be enough.

You need to be clear to both your parents and everyone else that you will not be helping care for him anymore as you work full time, have reached your limited and have been contemplating suicide over it...

Morning Minty, I'm afraid I don't know enough about the remit of social services. However could you request a home assessment from the district nurse? I know she's been elusive, but if you say the home need a decision and you need her support, perhaps she will be useful.

Yes I'm surprised the home has taken such umbrage to a wife struggling to cope with change. Could you have a meeting with them on your own, explain you're all struggling, but have to be realistic. How would you even get your dad in the car? Tbh I don't think your dad is being fair either. He must know that going home isn't really an option, but I understand him not wanting to face reality. As a pp said, when any scenarios are being discussed it needs to be clear you are not on the care rota. The question is whether your mum will be able to care for him, not you.

Find the number for adult social services in their area and get your mum to call them. Explain that dad may be leaving respite care and coming home without a care package in place, he wants a needs assessment. You could of course call yourself and in addition tell them that you think everyone around you has lost their mind.

This time mum does not get to dismiss the carers and have you do it because things have changed and you are going to be back at work. Stand in front of a mirror and practise it. "I am back at work now" "I am a single parent and I work full time"

This is your time to be hardcore and tell EVERYONE that you will not be helping care for him anymore. This is the only way he will get the care he needs...

BTW I was not meaning your DF should come home, even if he wants to. It is clear that would be impossible, if just for the practicalities.

It is very common, I think, and understandable, for folk who go into care to express a wish to go homehome. Who wouldn't prefer to be at home rather in a care home?

I would reiterate what Candelabra says.
Social services will not offer extra help if an adult daughter is there managing the situation.

I can understand the approach of the nursing home. We used to actively discourage family, especially carer visits when I worked in a hospital that provided respite care for people with dementia. The respite would not be withdrawn if they did visit, but they would have had the 'talk' from the senior nurse.

Does anyone know/think that if we got social services involved and explained the situation they would just say 'don't be ridiculous, it won't work, he's staying put'?

Sadly probably not. The term 'capacity' has become a watchword for Social Services. They will put in care packages to support anyone who says they want to stay at home, even if that person has very poor 'capacity' in the legal sense. So if someone can actually say the words 'I want to go home' - that is what Social Services will do. That person can have a high degree of dementia and have such physical problems that they cannot care for themselves at all. Also sadly the care packages will not support someone who needs 24 hr care - Social Services departments don't have that level of cash. Have watched this play out within my family - and I warn you - it's a slow car crash that you can see coming from miles away and there is not a thing you can do to stop it. As Random says time to play hardcore and harden your heart.

Please Minty step away. Ask your friend to have a frank conversation with your Mum - she's a good allie.