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My mum is no longer able/no longer wishes to care for my Dad - Carers UK Forum

My mum is no longer able/no longer wishes to care for my Dad

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Hi, I'm new to the Forum and have already read a lot of useful information. Hope someone can advise..

My dad is almost 80 and suffers from Normal Pressure Hydrocephalus - fluid on the brain. It means he is completely immobile, has episodes of double incontinence and has a type of dementia associated with the condition (apathy, memory loss, lack of engagement). He is still able to make his own decisions. My mum who is 72 is now his full time carer but she has help from outside carers in the morning. Their marriage is very unhappy and has been for a long time and my dad's condition has become so bad she no longer feels she can leave him alone during the day mostly because of the incontinence and also because he needs help getting on and off the commode which he demands to use many times a day. He is overweight so this is very hard work for my mum. She has recently reached a point where she feels she can no longer look after him nor does she want to as she wants to have her own life. My dad is a very selfish man (always has been) and is used to getting his own way and having my mum do everything for him with very little appreciation.
My question is: does my mum have to carry on caring for him? What are her options? Can he go into a nursing home if she refuses to care for him? SS have carried out assessments, however, left my mum with the impression she doesn't have a choice. She could have more carers during the day, however, my mum would feel like she still needs to be there and she doesn't want more equipment in the house..
Dear Gail

I'm sure someone will be along with direct experience, but having been reading posts on the forum for the last few months I have learnt that no one is under any legal obligation to care for anyone else. It is ridiculous that your mother is being expected to do all the physical work of caring for your father alone, especially at her age. I cannot believe that SS are allowed to do that. As I understand it, your mother needs to request a needs assessment for your father, and a carers assessment for herself. For the needs assessment she will need to list all the things that she does for your father, however minor. Depending on your father's (not your mother's) financial situation he may have to fund any care (be it at home or in a home), if he has assets (including the house, or his portion of it) and savings over about £23.5k (not sure of precise figures, but others will know). If he needs medical care then I believe the NHS should fund that, if it's just general care then it's up to SS. If your mother wanted to walk away she could, she should just let SS know that he is a vulnerable adult and is on his own then they'd have to step in.

I hope that I've got it all straight, but I'm sure someone will be along to correct me soon.

I hope that your mother can escape this terrible situation and get to enjoy her remaining years in peace and happiness.

Thank you for your reply, Emma. My mum and dad have recently had assessments I believe - I need to speak to my mum to establish if they were the actual needs and carers assessments.. I live away and have recently had a baby so can't help as much as I'd like. She has already changed the house to tenants in common and I don't think my dad has many other assets.. I don't believe he has had a financial assessment so far. It's all a bit of a mess and I can't believe my mum is in this position.. We can't see a way out at the moment.. My dad is due to have another operation for his condition but it is fairly well advanced so I doubt it will improve anything..
Social services WILL step in if a carer can no longer care. However, until you walk away from the situation they will let you carry on. The reason we end up as carers is because we care. Walking away from someone who needs care is very hard.
In my own case I was signed off work with stress and used that as the point to phone social services. Others have had tougher calls, refusing to take a parent or partner home from hospital.
It's not something my mum would do lightly but she hasn't been treated well by my dad so obviously there is a lot of resentment there but she still feels a sense of duty..
Hi Gail,
Your Mum is likely to be her own worst enemy in this unless she can be brought to see that sacrificing herself to a sense of 'duty' towards a selfish man who she cannot possibly look after all on her own and whom she no longer wants to be with is foolish in the extreme.
Assessments they are likely to have had or should be having are from Social Services, an Occupational Therapist and a Continence Nurse.
The SS assessment will produce a Care Plan. This details the amount and number of carers who should be attending your dad every day. They should be getting him out of bed, washing and dressing him, attending during the day to help him onto the commode and attending at night to put him to bed. This is basic. The Care Plan may suggest other times of attendance. Mum's Carers assessment by SS should produce a sitting service to allow Mum to go out and about at some time during the week.
The Occupational Therapist's assessments should produce equipment such as a hoist, hospital bed if needed, commode, and loads of other bits and pieces which will help. (Mum is refusing equipment?)
The continence nurse should give dad a prescription for continence pads which the carers should be changing, not Mum.
However, I believe that it is perhaps time dad was in a Care Home, where he can be attended by carers and nurses 24 hours a day, freeing Mum to live her life.
Once dad is in hospital, there is an opportunity for Mum to refuse to have him home unless a complete care plan is in place, including CHC or even to insist he goes into a Home as she is unable to care. I'm not very knowledgeable about this but some people on here are very clued up and I hope they will answer your post and tell you how to go about it.
If Mum will not be swayed from her 'duty', there's not much you can do except insist that she accepts all the help, equipment and aids that are offered and keep chipping away at her stubbornness. Don't overstretch yourself either because the more help you give her, the more you are enabling her to continue in this position.
Gail - No, your mother does not HAVE to care for your dad. No one does. None of us can be forced to do so!

Yes, SS might very like to imply that your mum has 'no choice' but to do so, but of course, well, they would say that wouldn't they?! SS and the NHS try DESPERATELY to dump all caring work back on to family, rather than themselves. BUT we pay our taxes all our lives, and what we are entitled to we are entitled to!

So, if I were you, first off I'd get in touch with Carers UK's team of experts here - most people say they find emailing first and getting CUK to return the call is easier than repeatedly phoning a busy line etc.

The key thing is going to be the financial situation. As you probably know, and others here are already telling you, it will be your FATHER'S finances that are taken into account, not his joint ones with his wife.

Secondly, it will depend whether your father qualifies for NHS care under things like Continuing Health Care, in which case it is completely 'free' (ie, on the NHS). BUT, if he only qualifies for SS care, he' ll have to self-fund until he's down to no more than £23k in property and savings.

BUT, if your mum (a) owns half the property and savings and (b) is living in the house herself still, then things get more complicated, and that is why you need clear, correct, expert advice.

DO NOT RELY on what SS etc tell you! Time after time on this forum posters are told by experts and other experienced carer members that SS has made mistakes (remember, SS do not want to pay for any care at all!)

Finally, from everything you've described in your post, it's high time your dad went into proper care where his complex medical needs can be well looked after - and his 'selfish demands' on his wife are halted, and your mum gets her life back. She's 'done her bit' to my mind, and enough is enough. Stick with her, and by her, and it will very probably fall to you to get everything sorted and stop her being pressured either by SS, or your dad, or both, or her 'guilt' etc etc, and balking at putting him in a home at the last minute.

If push comes to shove, she can simply walk out of the door, tell SS/GP she's doing so, and leaving a vulnerable adult alone in the house, and the emergency services will have to arrive and take over.

But the occasion of your dad's forthcoming op seems the ideal time to prepare for his transition from hospital to Care/Nursing home.
When is the operation due? There are two main options. Either
1. Arrange for SSD etc. to reassess now.
2. Wait for the operation and then simply REFUSE POINT BLANK to have him home.

From what you say, dad has been very domineering, and will remain so until the day he dies, he won't change.
He already has very high medical care needs. So the best option would be to ensure that the hospital do an NHS Continuing Healthcare Assessment before discharge. This is supposed to be standard procedure, but often they "forget" especially if there are family around. For more details google Continuing Healthcare Framework, and also the relevant checklist assessment.
Social Services seldom seem to do what they should. Copies of dad's needs assessments and mum's Carers Assessments should have been sent to them for approval - did they ever receive these? If not, tell mum to ring up and ask for copies to be sent asap. (The answer may well be that they were never done properly I suspect. If this is a case, make sure there is an URGENT reassessment.)
Thank you so much for your replies and very helpful advice - I have sent the link to this thread to my mum so she can read the replies herself. My dad already has a lot of equipment in the house such as a stair lift, zimmers, wheelchairs, grab bars, shower seat and they have Care Line for when he falls.. My mum doesn't want her home to become like a care home so has tried to avoid hoists etc although they now have a swivel one downstairs. The SS suggested my dad move downstairs but he refused and he also refuses to wear incontinence pads.. He never acknowledges how it all impacts on my mum which frustrates me greatly (I no longer have much of a relationship with my dad but that's another story)..
My dad is having an MRI today and then I believe his op will be scheduled.
I really appreciate your advice and I will make sure my mum reads it and we can discuss the options..


I received some very supportive replies to my original post, which gives the background to the situation, and hope I can get some more from you lovely people as the situation has moved on..

After a series of falls at home in March, my dad was admitted to hospital where he remained until his operation. Unfortunately, the operation was not a success and he is completely immobile, can only sit in a chair for short periods, he is doubley incontinent with a catheter, and needs round the clock care. He does not have immediate medical needs and is of sound mind.

Last week there was a meeting at the hospital to discuss his ongoing care and he agreed to go into a care home and it was explained to him that my mum could not care for him anymore. However, a care home manager visited him and when he learned of the fees, he decided he wants to come home - obviously he has a right to make this decision. We don't think he understands that he'll still have to pay for care at home and have people coming in and out, he'll have to move downstairs etc.. Obviously this has greatly upset and worried my mum - she knows she can completely withdraw and have nothing to do with his care but it will still effect her life as people will have to come to the house at all hours, her home will be full of equipment, she'll have to deal with his very aggressive nature and she feels like she has no choice as "it's his decision".. Does she have any say in this at all? Can she flatly refuse to have him home when it's his house too? Would her only option be to walk out and tell the relevant people she's left a vulnerable adult at home? Would this even be effective if there is a Care Plan in place?

Thank you in advance.. We thought the fight would be with SS, not my Dad..