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.

I was in my 50s when I helped my late mother and my late husband with toileting. It was difficult for me. I wasn't a weak woman, but handling an adult human being isn't easy: my mum was very light, and even helping her wasn't easy for me.

A year after my husband died, I had to have a shoulder decompression.

Your Mother is perfectly at liberty to refuse to become a carer iin spite of what you or the hofpital think she should do I voluntarily cared for my husband and the more I did the more was expected of me it damn near killed me and I was in my 50s You need to get a meeting set up to arrange your Dads safe discharge with the hospital Stop expecting this from your Mother and judging her for how she feels

The woman is in her 70s - it's going to be physically very hard for her.

I had carers to help with Mum but had the night-time care to do for her and sometimes had to help DH during the night.

I had to help a carer with Mum in the morning and get DH up and breakfasted before I went to work.

Mum died when I was 55. By the time I was 58, I finished up taking early retirement. Even not working, I was exhausted because of broken sleep.

DH was compos mentis, but i had to help him with his showers. On bad days, I helped him on and off the toilet. I had to deal with his meds, sort out the creaming of his legs and feet, etc.

As time went on, he needed more help with being lifted off seats, on and off the toilet, etc. Latterly I was helping him twice a night with a urine bottle and that was very difficult - I'll not go into it all.

DH has been gone 5 yrs now and I still don't feel fully recovered. My sleep patterns are all to pot; as I said above, I needed a shoulder decompression because of the lifting. Latterly, we got a bed raiser supplied by the council, but DH still needed help getting out.

From what the OP has said, her father is in a much worse condition than my husband. It sounds as though he'll need a hoist and that probably means moving furniture around and so on.

I note that the OP has said that she and other family members will likely have too much on their plate to step in. All I'll say is that it would have made a world of difference to me if my DH's adult children had very occasionally sat with my husband just to allow me to go out without worrying. I don't begrudge my husband anything, but the stress alone was debilitating. I miss him every day, but I could have done with more help.

We were given interim care when he first had his stroke, but the Home Care team manager took one look at me and cut it all. We were given a little bit of help at the end, after his last hospital stay but then it was all on me again.

More help from the kids - even just in organising things - might have made a difference. NB One was working from home, but the other had had a very good job which meant that she'd been able to retire well before 50.

I think that the OP is being rather shortsighted if she thinks that a woman who is in her 70s is going to cope with the physical side of looking after a full-grown man. Being fit in your 70s is nothing like being fit in your 40s.

Op. My father was in a similar position some 4 years ago. My mother was not confident about the peg and both of them were elderly - late 80s. The nhs and local authority funded carers 4 times a day to do medication and peg feed. He came home when this was in place and all worked well. The carers were great and my mother was able to continue being his wife and not his carer. One more thought - if you can get male carers for some of the visits that was helpful for him as well .

It sounds like that one of the best things you and your mum can do at the minute is be very clear to the hospital that you won’t take him home without a care package.

Thirded. No thanks. It’s really important to understand the point at which care should be provided by professionals, and not guilt family members into things they are fundamentally uncomfortable with

Hi OP, I know you've given an update so can now see your Mum's side of it but I just wanted to add that we don't really know what their relationship was like before he took ill. If I'm thinking of my (now ex) husband, I remember he was a smoker and a drinker and I was really against looking after him if he was to ever take ill as I didn't feel it fair. Saying that, if he had looked after himself and been their for me and his sons then it would have been a different story.
I'm not sure if this is relevant to your Mum's feelings but I just wanted to show it wasn't black or white. Hope you're dad's OK x

I watched my own mother in age immesurably looking after own father shortly before he died. And there was no toileting or lines involved.

75 and perfectly healthy won't stay that way long with huge caring responsibilities.

I realise this is emotional for you, but you've walked in the thread moaning about your mother and then freely admitted you've done preciously 0 to look into what support either of them are entitled to and was more than happy to lump it all on your mother with no thought for what that might look like for her.

Do some googling and find this shit out.

Just to add that the OP’s father must be in a bad way if he’s no longer able to swallow.

I’d be worried about dealing with peg feeding - surely you need training to be able to do this?

I can’t imagine how a 75 yr old can be expected to move and handle a grown man on her own.

I have a friend who did this very briefly, but her husband was compos mentis, albeit weak and he wasn’t being peg fed.

Also my friend was a retired nurse and had the help of 3 daughters and their husbands. 2 of the girls were HCPs.

If you cannot wipe the arse of a loved one when they need you there's something really wrong...

@Paganpentacle I would hate to have my arse wiped by anyone but I would really hate to have my elderly partner or DC to have to do it on a regular basis

Don't be so trite. 24 hour care of someone who finds it hard to walk, needs assistance to get in and out of bed, is tube fed, and needs all his toileting to be accompanied, plus the rest, is not just "wiping a love one's arse".

There's a reason that nurses retire before they're 75, you know.

I was responding to those that referred to wiping their husbands arse as a line in the sand… not that they physically couldn’t do it, rather that they didn’t want to.
Hardly “in sickness and in health” is it?

She's not divorcing him, is she? She's saying that she can't do it.

As are many posters.

So would I

I can relate to your mum, when my husband came home after 5 months in hospital and I was told the same my first reaction was “no way am I doing that” we had carers arranged 4 times a day, but when you realise the body doesn’t work to a schedule and how inconvenient it is having people in all the time you soon learn to do it. 4 years later I take it in my stride and it’s now my normal life to do everything for him. She needs support it’s a massive adjustment from having a healthy husband to an unhealthy one, plus she will be going through a period of grief!

There’s no way I would do this for my parents or for my DH. Nor would I want them to do this for me.

I bet you're not 75, though.

OP, why did your DF go into the hospital in the first place?

I'll be honest OP, reading what you've written about your DF, it may be time for him to be cared for in a home. As a PP said, having carers coming round four times a day isn't going to cut it.

This! A ‘rota’ for my adult children with jobs, lives and families of their own?! No no no.

Exactly.

But as I just posted, I suspect the OP's DF is beyond being cared for at home now.

It’s outrageous that a 75 year old woman is being bullied into dealing with toileting and getting a 78 year old man in and out of bed etc. He needs 24 hour care.

I really think that you DM has more of a grip on reality than you do, OP. You have completely buried your head in the sand over all this.

This is very sad. Your DF will be heavier and it’ll be hard:impossible for him to stand up without support for your DM to manoeuvre him to clean him after toileting . Let alone change his clothing /underwear and then get him back to the chair or bed. She risks her own health and physical injury. Ditto for the complexity of PEG feeding. Then there’s her own needs and all of the night time requirements. It sounds like there’s a need for day and night time care here or residential care. Imagine if you were being asked to deal with this 24/7?

My own DM is seriously ill in hospital right now so I’ve been sat on a ward for the last three weeks. The most shocking thing has been the conversations between the discharge team and patients without any proper consultation with the supposed carers. They seem to assume that everyone has a bed downstairs with an accessible toilet and 24 hour family support.

I’ve watched lots of very stressed families look so guilty and grief stricken when they’ve eventually found the courage to say that isn’t the case. Trying to send a doubly incontinent and immobile lady home to the care of her 90 year old DH with only a bed and washing facilities upstairs that she couldn’t access wasn’t a surprise.

Your poor DM won’t be able to be a full time 24 hour carer to your DF and that’s ok. I was advised to go to the ward reception desk, ask for the ward clerk, make it clear that care at home was not possible and a referral to adult social care. Stick up for your DM OP and get the care that she and your DF need. Good luck and I’m sorry that you are facing all this, it’s so stressful xx