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.

If you're a 75 year old woman, it is very possibly physically beyond you.

I've done it for a parent, but I was much younger than that.

When my husband had a temporary relapse - after a UTI caused his stroke symptoms to reassert themselves - I was in my 50s and reasonably strong.

He could not sit up in bed. I needed to change his sheets and I couldn't do it - I wasn't physically strong enough to move him. I am at a loss as to how people expect a 75 yr old woman to be able to move a grown man on his own.

I was able to move my mum, but she was down to 6 stones and even then I accidentally hurt her one time by sliding her across a sheet the wrong way and giving her a friction burn. Only after that happened was I given moving and handling lessons for her.

I asked for moving and handling procedures for my husband. The response from the home care specialist was silence and a shrug.

Thank you for saying this.

I am assuming that those who think that this is easy have experience of being septuagenarians and moving and handling frail, grown adults.

I'll emphasise that 'frail' doesn't mean small, light and easy to move. Doctors described my husband's condition as 'frail', but on days when he could not move himself, there was damn all that I could do. It meant, for example, that if he had a fall I had to call the fall team - and if they weren't available, then it was an ambulance.

My husband was in better condition than the OP's father - at least my husband was able to eat (though I had to cut up his food for him) and could make it to the toilet himself most days. Towards the end, it became much more difficult which is how I finished up needing surgery on my shoulder - and at that stage I was only 60.

All of this.

In Fife, carers are told "Oh it's fine. Just throw out all the furniture in your living room and move a bed in there. We'll give you a commode."

You learn the hard way that you have to be "difficult".

A gentleman in the same stroke ward as my husband was sent home with no ability to talk, walk...

His wife was promised a lift "...but if you just put a bed in the living room in the meantime..."

In the end, she looked into the cost of paying for a lift herself. He died first.

Why on earth would she want to do that? I wouldn’t. I bet he wouldn’t have done it for her either, of course you’ll believe he would have because you love him but I seriously doubt it and it’s big what the statistics point towards. Tell her to speak to the staff and ask what she needs to do because she has no intention of administering his care. Maybe he’ll need to go into a care home, perhaps he’ll need carers or maybe other family members will need to step in. She needs a care assessment (social worker?) and she needs to be honest with them. Perhaps when she realises the care will need paying for she might want to look after him but that’s sad.

My late Mum was 6.5 stone. When she fell she was a dead weight. The PP who says there is something wrong with us clearly has no idea WHATSOVER!

I know other women who were carers. Each of us has lingering medical issues, both physical and mental.

I used to try and tell Mum to help herself get up whilst I was trying to get her back on her feet. She couldn’t do it. Many times we had to call an ambulance.

Anyone who suggests it our duty etc has NO idea what it is like.

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

Do you speak from experience? Have you ever had to give an adult round the clock care, including bathing, toileting, lifting them out of bed, dressing them and dealing with feeding tubes? And all at the age of 75?

When my husband was in hospital I had visits from the Occupational Therapist to see whether it was feasible for him to come home, and we were provided with all the equipment necessary. They set a care package in place, This included carers coming to the house four times a day. They dealt with personal care, obviously, but I did anything necessary when they were not here. They told me that he would not be discharged until they were satisfied that things would be safe for me as well as him. Ask the ward staff who you need to speak to for advice.

I’m not 75.
As I said previously… I wasn’t specifically talking about OPs elderly mother, rather the ones that would refuse as it’s “crossing a line”.
And yes.. I’ve wiped my husband’s arse after surgery, bathed him and got him in/out of bed. Because I love him and he’d do the same for me.

Forever? Would you do that forever? Not just after a bought of surgery?

And could he feed himself? Did you have to make sure his feeding line was clean and safe?

Why on earth do we put old people through
this . If you can’t even wipe your own bum you have no dignity left at all . Your humiliation is complete . It’s time a national conversation was had about a right to die . No way on this earth would I want to have someone else ‘ care ‘ for me like this . We insist on keeping people alive in a shell of a body when we wouldn’t even allow our pets to suffer .

In sickness and in health… it’s not supposed to be optional ffs.

Do you even know if discharge home is actually feasible? My 80 year old mother was discharged straight to a nursing home due to the peg care and extreme frailty. Home discharge just wasn’t even on the table. If she’d have gone home it would have been like a prison sentence for my dad. Everyone involved were strongly of the view nursing home was the most appropriate next step.

Even with nursing care at the home, she’s been back to A&e for an infection at the peg site. She needs regular turning, high levels of pain medication, can’t independently toilet. The nursing home has taken over liaising with the hospital so it also lightens some of the mental load re medication and feeding supplies. My dad just couldn’t have done all of that. Do you really want a life for your mum where she can’t leave the house, is tied 24/7 into a difficult role that she may not be physically or mentally able to do?

And you’d be willing and able to do that multiple times per day plus learn to use a peg and many other tasks? All this would mean near to no life of your own, be on night and day duty every day until your DH dies or you get burnt out yourself all at the age at 75?

I've been my husband's carer for 35 years. He has gradually got worse over time but he still has some very limited and painful mobility and can eat but yes caring comes at a cost. For me the mental damage is worse than the physical although my back and joints have taken a battering.

I don't judge anyone who can't do it.

I understand what you're saying but it's a complex debate. The OP's father (or anyone else in that situation) doesn't necessarily want to die. His cognitive functions are apparently intact and he has limited mobility. If euthanasia was legal and normalised wouldn't he and others like him feel pressured or honour bound to accept it? I know I would.

And you wouldn’t do this for someone you loved?

No I’d find it physically and emotionally impossible.
I cared for my DM for four years before she went into a care home and it destroyed me. I ended up having a breakdown and needing counselling.
No I wouldn’t do it again.

Understandable.

A 75 yr old isn't fit to do this. It's not safe for the patient or the carer.

I've made mistakes in the past when caring for loved ones. I know how it was when I was in my 50s and 60s. Physically, I couldn't do it all at 75.

I've seen no mention of a care package being put in place for the OP's father or of the OP and her sibling being able to step in to help. It's not possible for a 75 yr old woman to do everything that her husband is going to require.

There has been no mention of the home being assessed for equipment etc. Given that the gentleman concerned is now being peg fed, then I assume that he must be very frail indeed.

The likelihood is that he's going to need a hospital bed, a hoist and that training will be required for anyone using this equipment.

As I said earlier, and a PP has also said, it really doesn't sound like your DF being discharged to his own home is feasible.

@Paganpentacle I am caring for my elderly DM who has Dementia. I am much younger than the OP’s DM. At the moment no intimate care is needed. I am emotionally wrecked and we are not yet at the worst stage of dementia, and I get to go home to get a break. I wouldn’t wish a caring role on a 75 year old, which will also include physical care.

My MIL is slightly younger than OP’s DM. She is pretty fit and capable. Started to have some minor health ailments. She said the other day that for the first time she was feeling old. She wouldn’t be able to take on caring role at her age

When my dad needed support with at-home dialysis, my mum completely refused to get involved. It was just things like helping him connect all of the tubes safely as his vision was failing. I founder attitude towards it all quite shocking. I have since realised that she was covering up her own cognitive decline. She wasn’t able to do it - but don’t want anybody to know, so she acted like a brat instead to deflect. The cognitive decline also meant that her usual filters have gradually peeled away and she says the strangest and most hurtful things. Keep an eye on this.