Frustrated with mum

[loobylou44]

Dad (78) has been in hospital for 3 months and will hopefully be coming home soon. He went into hospital relatively fit and well but will be coming home with a peg (feeding tube) and limited mobility. Mum has spent the whole time refusing to engage with anything medical and said she won’t do the feeding tube or medication when he’s home. She always pulls a face and makes a retching noise when we talk about him needing help with toileting. Is this a normal reaction? I’m trying to understand things from her point of view but struggling. My poor dad is feeling like a burden and is sad that his wife of over 56 years is being like this.

Its maybe a lot for your mum to take on are you and other family members nearby and willing to help to take on some of the load/relieve some of the pressure. The hospital should also send him home with a care package for four to six weeks. Give him and your mum time to adjust.

My dad had dementia and didn’t need a feeding tube but was doubly incontinent and stopped being able to wash himself. Although he wasn’t a big man my mum was exhausted with the constant worry of him falling, hurting himself, worrying about him doing something dangerous, wetting the bed every night, forever stripping, washing and remaking the bed, him getting to the toilet on time etc etc.

Some people care for people in other ways, I've been a carer but I know people who can't do the toileting. Speak to you mum and see what she wants.

It’s completely fair enough that she doesn’t want to do the medical stuff. But I would imagine it’s her attitude and behaviour that is the problem rather than not wanting to do it. There are respectful ways of saying “I won’t be able to do that for my husband” and then there’s making retching noises.

Apply for attendance allowance now ask for the application form online and it can be backdated if successful from the date you asked for the form that will help towards some costs. Tell the hospital now about how your mum feels about care and ask for an appointment to be arranged with the hospital social care team now or certainly before your poor dad is admitted home.

It is a lot of work, worry and stress for your mum, your family and you even with social care and carers coming in.

take care op

Hi OP I am the main carer for my DH who suffers from dementia. He has early onset dementia so I am quite young (59). Nevertheless caring is hard and manoeuvring a man to the toilet is a considerable logistical challenge. I have needed aids and support to enable me to do this. I do not have a feeding tube, I feed by hand, but nevertheless feeding is hard and may require some training. At 75, your mum might find this daunting and may take some time to get her head around this. She also might need carer support to assist. My strong counsel is to sit down with Doctors and Social Services and work out clearly how your mum will be supported, both with carer support and with aids to allow her to support your dad. It may sound unkind, but I would not accepting your Dad home unless there is a clear approach in place which you all need to be part off. Accepting you are all working, you do need to set up a rota so your mum gets some time off. Evenings out or a day off at the weekend. If you need to get in private carers I would recommend the UKCIL site (recommended by my LA), where if you need you can employ carers directly.

Just scanning the other posts. There are two benefits you could apply for. Attendance Allowance and Carers Allowance. I would get both underway. Both would help.

I don't blame her. This is why I've told my family that they should put me in a home when I get dementia or am physically incapacitated.

Your DF needs a care plan. And carers. Do not let the hospital discharge him without one. Say it is an unsafe discharge, because your DM is not capable of looking after him on her own.

dear OP, I am so sorry this has befallen your DF. I also send my heartfelt good wishes and sympathies to respondents relating their experiences of being chief carer for a dear close relative. I think of a close friend who's beloved husband had a "hard dying" (as they say) at home last year, and how she loved him and honoured his care (with wonderful support from NHS and Macmillan Nurses) to the end. I think of a near neighbour who's husband is on a slow down-trend with many repeated hospitalisations and, being so lucky to be in a local council where home-care is still funded, reliant on 3x or 4x visits p/diem from carers for his personal needs. And I think of my own experience in a long-ago childhood, where my DF, rapidly failing from a motor-neurone-like disease, and there being no (really, no) support. My mum cared for him day and night. Emptied his urinal bottle. Hauled him out of bed to use the commode. Wiped his bum. Wiped his heels and back/pelvis with surgical spirit. Kept him in daily clean bedding and pyjamas. Pre-washing-machine in our house, I might add. I stood in when she had, for some necessity, to be out of the home. I remember working out how-to and then carrying out single-handedly the hauling/swinging him out of bed onto his commode chair when I was 8/9yrs old. He died when I was 12.
Sorry, OP, but your mum is a cow.

No she isn’t.

I don't think her reaction is that unusual. Most people would keep it to themselves, but they'd still be thinking what she's verbalised. And fit and healthy or not, it's no joke caring for someone, so I can understand she's not thrilled with the idea. Is there hope of improvement?

Have the hospital given anyone training on the use of the PEG? It might be different for children, but we were told DS would not be allowed to leave hospital until a nurse had to taught us how to use the PEG and then signed off that she had watched us doing it correctly and we knew what to do.

In terms of helping your dad with toilet issues...to what extent are they expecting a 75 year old woman help a 78 year old man?

I think you need to discuss with your parents how they see life moving forward. Does you dad want to move home or would he prefer some sort of assisted living or care facility? If he wants to stay home, who will care for him (assume it won't be your mum) and how will they be paid? Who will manage every aspect of day to day life (getting him into and out of bed, showering, getting dressed, going to the toilet, eating etc), who will manage all the medical appointments, nurse visits (if you can get community nurses to assist), order the special food that goes through the PEG, who will take him to hospital for check-ups or in an emergency if the PEG is blocked or he gets an infection etc. Life's going to look significantly different for both your mum and dad from this point forward, and it's fine for both of them to deal with this in their own way, including grieving their old life. But I think you need to consider outside help.

What a vile thing to say. This is a 75 year old woman who doesn't feel able to cope.

Id say your mother had poor judgement leaving an 8 year old to get a grown man onto a commode. I take it you were a very big strong eight year old.

Ask to speak to the discharge coordinator. He will need assessments from OT and a report detailing what support he will need. Is he likely to regain any independence? If he has rehabilitation potential then they should discharge him with a reenabling team /intermediate care to support.

No she's a human being with her own limits.

Please ensure your dad has an assessment with adult social care/ hospital social work team. Your dad should be sent home with a package of care to support the transition home. This will be reviewed within 2-6 weeks and if he needs support with continence and peg care this can be done by carers if your mum isn't comfortable doing this.

I'm sorry for what you went through. But when you say your mother had no support, do you really think she would have turned down any support, as it now exists? That the OP's mother can access?

And please do not call a woman a "cow".

What a difficult experience for the whole family. The level of care your dad needs sounds intense, and more than just one person can do.
Have they done assessments for continuing care?
Have they discussed what having a peg tube means for discharge? Where I live if you can't give your feed yourself, district nurses and carers won't do it either so it has to be family. If family aren't willing to be trained, you have to go to a care home. I know in some areas carers will do it though.

OP, your father has been in hospital for a quarter of a year. I really, really doubt that your DM is capable of looking after him, whatever your feelings about her.

Which, to be honest, I think you are being a bit unfair about. But maybe that is part of your grief for how your father is now.

OP,
I really feel for you. My mum did a great job of caring for my dad during his initial cancer treatment but when it became clear that he wasn't going to recover his mobility or continence, she had a complete nervous breakdown and could not be around him without causing distress. Her behaviour was very difficult to understand or accept - for all of us. We ended up paying for private carers to be in the house 24/7. She received a lot of support with her mental health. I think we all like to think we would cope with becoming our partners carer and just soldier on, but the reality is that we all have a breaking point and the reality of your partner becoming disabled after 70 can be very bleak. You need to speak separately to your mum and Dad about what they each want and need. Noone wants to force a parent into a nursing home, but that may be better for him if she cannot accept him the way he is now. Good luck x

Op you need to ask for a meeting with the complex discharge team. They need to understand that your mum is able to support any further than being in the home with your dad. It’s likely he will need a CHC assessment although on recent experiences he won’t be able to access that funding and will need to have a care assessment by adult social care. If your parents have over £23500 in savings ( individually so remember to divide joint savings in half ), then they will be expected to fund some or all of their own care.
He is going to need a substantial package of support, and you will need to know if he has any night time needs as well as your mum has clearly said she is unable to help.

any carers will need to have training in his peg feed ( I am presuming he has not been trained to manage this homself) .

it going to take time to make sure all the assessments and training are completed and care in place.

I presume that your mum is a very similar age to your dad, in which case It’s very physically fat too demanding yo expect her to do that. Also you don’t know whether your parents relationship is actually like - it might appear good but might be a different story behind closed doors. You must also listen to people EHOs parents have looked after their elderly spouse & found it physically & mentally difficult.

You need to tell hospital that no-one in the family is able to do daily care. If your DM has to do all the caring she won’t be fit and healthy for long. Will hit her emotionally as well as physically

Are there any concerns about mother's cognitive competence? BC sounds very odd.

Hrft

Sorry not sorry, I wouldn't do the toileting needs either. As for the tubes, I'm not sure how confident I would feel about those. The retching noises are far fetched though.

Is she fully aware that he will not be able to cope without her assistance and that the alternatives would be (1) caregivers coming in at various times of the day to help him - which they would need to pay for, or (2) him going into full-time care - which they would need to pay for.
Maybe she needs to be made aware of the stark reality of her choosing not to engage with his needs.

I think OP is not acknowledging what a burden this would be for her mum. She would be "on duty" 24 hours a day - she knows this would be impossible. Making retching noises is horrible but she has to express her difficulties in order to get help - which the hospital should already have offered.
As others have said, make it clear to the hospital that the family cannot look after him, and get carers in place. Even so, your mum will still need all the help you can offer.