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.

Hopefully he has been referred to the district nursing team and carers if your mum isn’t willing to provide any care for him.
id be furious with her for being so childish

How old is she herself? I think you are being very naive here . Do you really have a hard time understanding why she is reluctant to do his toileting needs ? It's a huge task and not an easy one . And as for medical intervention like feeding tubes I would no be confident.
Why is he being discharged without some provision made for support . Unless you are prepared to help your mother a lot I really think you should be a bit more sympathetic to her situation.

She's within her rights to say that, not everybody can deal with these things🤷and dependent on how poor his mobility is she may not be physically able to do what is necessary. I'm sure after that amount of time in hospital he will have been assessed by the professionals and a support package appropriate to his needs will be put in place. Just ask to speak to the occupational therapist who has assessed his needs and recommended what is required for a safe discharge and she will be able to explain the options/plan.

My husband died at home in 2024. It was my privilege to care for him, to help him retain his dignity even when I was doing things for him that he kept telling me’I hadn’t signed up for’.
Your mum is probably scared, and now is the time to discuss whether she wants to have him home, or whether it might be better for them both for him to go in to a home.
My friend chose to have her husband go in to a nursing home at the end of his life as she didn’t want her home filled with medical equipment. No judgement here, but when she described having to visit him and the boredom of sitting in his room as he dozed, I thought how much better she’d have been if he’d been at home, where she could carry on with her life as he dozed. I am so sorry you have this extra worry just now.
Ask to speak to the social worker at the hospital and they may be able to help.

Even if she didnt want to do it herself which is absolutely fair enough, is that kind of contempt from her towards your dad normal? Childish behaviour in general?

I think that’s fair enough, they’ll have to pay for carers instead to do these things.

She doesn't have to take on caring duties OP. Nobody does.

If my husband needed help wiping his bum then there are ways of organising that, that doesn't involve me doing it.

You could always take it over.

OP I am really failing to find ANY reason why you would be struggling to see ANY non-medical person would worried about doing PEG feeds and helping someone in the bathroom. It isn't for everyone, especially someone elderly themselves. It's a massive responsibility to be PEG feeding and sorting out all the correct dosages of everything, plus the responsibility of making sure it all stays sterile and doesn't get infected (my best friend got a PEG infection a couple of weeks after having it and was a hare's breath from death). Not to mention the physical side of helping someone in the bathroom.

You need to admit that your expectations of your dad are completely unreasonable, and his push back is totally reasonable and help them organise home care or a nursing home place to ensure they both get their needs met.

If she's also a similar age, as others have said, this is likely to feel very daunting for her, especially if you are all expecting her to do all the care, manage the PEG feeds, etc. It sounds as if she's reacting very childishly, which of course must be upsetting for your dad, but the responsibility she is facing is huge and not everyone is cut out for it. She may not physically be able to manage toileting needs, lifting, handling, etc.

This needs someone to have a grown up conversation with her about what's going on with her reactions, and if she doesn't feel up to the task, what help she needs to make it possible for her. Ultimately, either they'll need carers/nursing care at home, or if that's not manageable, DF needs to be in intermediate care/reablement care for a time before being home will be realistic. This conversation needs having before your poor DF is sent home to a situation where he won't adequately be cared for and your DM won't cope. There are other options than strong arming your DM into doing it all.

I'm 75 and I'd rather be dead, seriously, than have my next of kin toilet me.

it totally changes the relationship. From, in your Mums case, loving partner to carer. In my case it would be a change from mum and child to dependant and carer.

in no way would I want that, and I guess your Mum feels the same.

I don't know what the answer is for you. Sorry

I'm sorry to hear about your dads situation. Your mum retching etc is very odd and childish, but I appreciate her suddenly becoming his personal nurse and providing PEG care and intimate cleaning would be a complete shift from a normal, wife role.

Would you be prepared to move in and take on the PEG care and toileting care for him instead? If not, then I think you know YABU. I would speak to the ward sister or discharge planner, explain your father will have no support at home and needs a full care package before being sent home. If your mum has her own medical issues/needs, I'd mention these also. DO NOT let him come home without an adult social services review and support in place beforehand.

Absolutely agree with this. Not being able to toilet myself is simply my line in the sand. If you really can’t imagine why your mother goes not want to do this for her DH, I hope you are never faced with having to have someone do it for you.

My poor 5ft nothing mum was persuaded by people to have my 6ft2but frail dad home after a couple of months in hospital. It was awful.
She was 80, him nearly 90. Not a HCP she did her best but it broke her and robbed her of the 'boredom' to make her peace with seperation through death. Never again.

Looking back I should have pressed for hospice. The house became a mess, my dad had hallucinations about figures leaping around their wardrobes in their bedroom that my mum then had to return to. It was a disaster for my mum.

I find your mum's reaction completely bizarre OP. I'm surprised by the number of responses who don't seem to agree. I mean, 56 years of marriage (in sickness and in health!) Etc. I totally get she might not want to be the one doing the personal/medical care, but her attitude and lack of engagement seems shocking to me. Why isn't she taking his needs on board and pushing for home help, or a nursing home, or asking questions as to how his needs can be met etc? It sounds as if she's just completely bailing. I get she may be scared, but it seems so nasty, and heartless. I think you are going to have to advocate for him, insist she explains exactly what she is willing to do, and don't let him be discharged until it is clear the gap between that, and what he actually needs, is met - either by care visits or residential care.

I'm so sorry you're having to deal with this, and how lonely I suspect your mum's reaction is making you feel.

I think her reaction is going to seem bizarre on the surface, but people don't always react in predictable ways when faced with stressful situations. Some people do react by regressing to childish states. This is often an expression of "I can't cope" when people aren't used to being able to express their needs and boundaries in an adult way.

The wellbeing and needs of elderly carers, whether that be spouse, children, or grandchildren, is often a very low priority within our systems. NHS and social care are quite happy if care can all be pushed on to family and they can do nothing, no matter what it costs families emotionally, physically and financially. I've certainly had to advocate very hard in the situation my DGM is in for my own DF, who is unwell himself, and myself as I'm the oldest grandchild, working FT and with teenage DC, so it doesn't get assumed we are the default care option, as DF isn't physically capable, but struggles too much with guilt to assert that with the HCP and is too afraid of what they'll think of us to tell them straight up that we are unable to care for her.

OP needs to advocate for both her parents here with the discharge team/social care, not just her DF, so her DM isn't put in a situation she can neither physically or emotionally cope with and that may place irrevocable strain on their relationship.

I can see both sides. I think the really upsetting thing is her responding in such an open and insulting way. She is within her rights to not care for her husband though that seems harsh (I cannot imagine not caring for my husband) but nevertheless it is what it is. Maybe talk to her and ask her to not be so bloody rude in front of him and have a discussion regarding what is going to happen with regards to his personal care. It urgently needs discussing and something put in place.

Can your parents pay for care OP? I think it would be a good idea to put something in place. It sounds like it would not work well for it to be all your mum's responsibility. You can always cancel it in future if they're managing well.

I agree. But I think making retching noises while her children discuss the care for their father is taking it too far.

I had to take on the responsibility for medication and personal care for my DH. I have a nursing background so it didn’t bother me, but my DH was absolutely distraught that I was having to deal with toileting, washing etc. Our relationship subtly shifted to carer/dependant instead of equal partners of a long and happy marriage. I didn’t begrudge anything at that time, but I wish now that I’d pushed for carers to come in to preserve his dignity.

OP, does your DF really want your DM to be his carer knowing that she is disgusted by the thought? It will ruin their relationship, better to source professional carer imo

I worked as a home care assistant for years and watched so many couples go through this. It’s more often the wife caring for the husband, and it’s broken the women, in many cases they have got really ill and or stressed themselves and in some cases died before the original ‘ill’ one.
Good for the OP’s DM for having her boundaries. The pretending to be sick thing could be nerves or her way of making it clear she won’t be wiping her DH’s bum. Either way she shouldn’t be pushed into being his carer.

I’ve had a rethink about my opinion on this so I’m actually grateful that this thread is here. My DH cared for his grandmother and I believe he’s expecting to be carer (along with me) for his parents but I am now questioning the dignity in all this. It may be that they don’t want this and I know I don’t want it for myself. Thanks OP. I’m sorry. I think she has been unpleasant for reacting this way in front of you but it may come from nerves and stress.

Thank you all for taking the time to reply. I’ve realised after reading them that I am being harsh on my mum, not about the way she’s expressing her feelings, but about the feelings she is having. I think we are all struggling as a family to know what to expect from the upcoming months and the transition of dad from the hospital to home.
For those asking we have had no interaction from the hospital with regards to coming home other than they have delivered a frame to go around the toilet to help him hold onto.
I have no idea what we should be expecting the hospital to do about his discharge and what they expect of us as a family. Mum is 75 and in really good health. My brother and I both live within the local area but both have families and jobs.
We all want to get dad home but we also have our own things going on in life and cannot but there 24/7. Where do we even start with the hospital? What sort of things should they be doing? What is dad entitled to with ongoing care? Is there somewhere we can look to see what we should be asking for?
They live in their own home which is owned outright and have a very small amount of savings.
Any advice would be gratefully received.

He needs the Discharge to Assess team involved. They will look at what needs he has such as assistance with toiletting / showering and can arrange carers to be put in place. A financial assessment will determine how much your father will have to pay towards this care. Contact the hospital discharge team in the first instance and make it clear that your mother is unable to take on this role. She should not be made to feel bad about it, not should it be assumed she will take on this job.

OP, your dad may be entitled to Attendance Allowance
https://www.gov.uk/attendance-allowance

He could use this to pay for regular care visits.

I think your Mum is being rather rude. I totally understand that she is feeling nervous and maybe not up to helping with your Dad however who does she think is going to be doing it?

The other thing I would say to all those PP who say they would rather go into a home or be dead before someone helped them. That is what my late Mum said.

It was a line she had drawn herself when she was younger and in better health. Then she wasnt, had made no plans for her old age.

My other siblings were abroad and consequently it was all down to me. She was sorry I was having to help clear her up when we were in public and she had eaten too much and had an accident. I suggested she pace herself with the eating beforehand and she told me to stop fussing. She once said if she couldnt ask me to help with accidents like this who would I suggest?? A home was out until it was clear she couldnt cope.

People make all sorts of boundaries until they dont...