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Schizophrenic father, stroke paralysed mother and a job - Carers UK Forum

Schizophrenic father, stroke paralysed mother and a job

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Hi,

Thought I'd join here and share my story - it's a long one.

I'm in my late 20s working 40 hours a week in a high tech, fast moving industry. I'm an only-child and live about 20 miles away from my parents in a rented house with my partner. At the weekends I visit my parents who are both ill in different ways.

My parents live together and care for each other. My father suffers from paranoid schizophrenia, which has barely been controlled by his medication for several years. He holds many beliefs which aren't compatible with reality, including that he's some sort of secret agent out to stop an entity called 'The Ring' from distributing illegal drugs and killing people. He also believes he's the owner of several multi-national corporations (e.g. McDonalds, Tesco, ASDA, etc). He's not left the house in over 10 years in case it 'blows his cover'.

My mother suffered from a stroke in 2007 which has left her paralysed down the left side of her body. She has very minor use of her left leg, so she's able - with assistance - to transfer from one chair to another, but has no use of her left hand (she's also left-handed). She is unable to make food or drinks for herself, or use the toilet without assistance to remove her clothing, as she no longer has the dexterity or coordination to handle these tasks and so is in need of constant supervision and care. Despite the physical symptoms and some memory issues, she's otherwise still herself. She has carers visit her two times per day (8am to get her up and wash her and 8pm to put her to bed).

Despite my fathers condition, he's been providing the care my mum needs for the past several years. Mum returns the care by ensuring he continues to take his tablets and looks after his personal hygiene and the house (which is difficult for someone who seems to have no care for these things at all).

I visit at the weekends, try to keep the place tidy, do the shopping for them, run errands, etc.

In the last three weeks my dad has been refusing to take his medication, despite involving his GP and social worker in an attempt to intervene. It takes a few weeks for his medication to 'wear off' (and conversely it takes a few weeks to start working again too), and from the discussion I've had with my mum this evening it appears his mental condition is deteriorating.

It's likely that unless he starts taking his medication again immediately, we will have no choice but to section him. This will result in mum no longer being able to get the care she needs without me giving up my job to look after her.

Selfishly, I really don't want to give up my work. I love my job, it's not just a job, it's a hobby for me. It's also in a fast-moving industry where any time out can result in you falling behind in your skillset, making it difficult to get back into. I also have 10 months left on the lease of the property I'm in, and I cannot afford the rent if I were to stop working. My mum couldn't move in with me as the house has no adaptations suitable for my mum. I have no brothers or sisters and my parents have no close friends who could step in to assist.

The social workers have discussed respite care for my mum should my dad need to be hospitalised again. This does put me in a horrible situation because I obviously don't want my mum to go into care, but I can't provide the care she needs without giving up my own life entirely and putting my partner into an unsustainable financial situation (she is paid barely half of my salary and couldn't afford the rent by herself).

My parents are just scraping by financially, despite me offering them assistance when necessary. I'm not sure I could afford to pay for in-home care, and I don't know what I'd do about paying for long-term care should it become necessary (and it's looking more and more likely).

I feel like I'm stuck between a rock and a hard place at the minute and I really don't know what to do. Things are teetering on the edge depending on which way my fathers condition is going to go and I'm constantly on edge because of it. I lose patience with my parents really easily and end up getting angry at them, and I feel guilty because of it. Their issues aren't their fault, this isn't a situation that they've somehow called upon themselves, so I don't know why it angers me so much.

Sorry for the long post - believe me, I could make this post 5 times as long and I still wouldn't have covered everything. I feel like Atlas, with the weight of the world on my shoulders.
Hi there Excession, welcome to the forum. You have an awful situation to cope with there. I have no experience of a situation quite like this, but others on the forum have managed some part of this - I am sure someone else will be along soon.

My reaction is that you must not give up your work - it will have a very bad effect on the rest of your life. Also, you are not responsible for paying for your parents' care - although I do understand you will want to help if you can (I am an only child too). Have you had the chance to talk to the social services about these worries? You should have had a Carers' Assessment, but social workers sometimes don't think of offering one, although they should. Your parents should have had a financial assessment too, which would identify the financial help they should be getting. You need some advice from people up to the minute on these things, as the system is undergoing changes just now, which mean experiences of just a few months ago may not apply now. I suggest you look at the 'Help and Advice' tab above and call the CarersUK helpline as soon as you can.

Many here will recognise the feelings of desparation, worry and resulting snappishness - and the guilt which follows. Absolutely normal, you are not alone in feeling that way.
DON'T move back in would be my first comment. You have a home, a partner, a good job which you enjoy. All those must come first, but that doesn't mean that you ignore your parents. Try to see your job as care organiser, rather than care giver. Social Services have a duty to vulnerable adults, and also to make arrangements when usual carers are ill. It sounds to me like they are not doing all they should, because they know that you are around!
So I'd suggest taking a few days off, and contacting Social Services, explaining that the situation is URGENT and then make sure you are around when they visit mum. I bet she's not telling them everything because she doesn't want anyone to know how she is struggling to cope. Streamline their house, make sure they have all the conveniences possible, dishwasher, washer/dryer especially. Financially, it sounds as if they are entitled to far more money as they both count as disabled. Ring Carers UK, or see if there is a disability rights organisation or similar in your/their area. They may well be entitled to Disability Living Allowance or Attendance Allowance.
Sorry, forgot to say that if mum and dad only have a small amount of savings and modest income, if mum needed extra care, or residential care, it might well be paid for by Social Services, subject to a means test. It is NOT your financial responsibility to pay for your parents, ignore any moral blackmail - a few of us here have all been subject to that! Keep in touch. There are lots of us here who are, or have been, caring for older parents, me included, so it's very much a case of Been There, Done That. The whole point of the forum is to help each other. I'm here mainly so no one else falls down into the traps that I did! Feel free to pick our brains as much as you want. You will get replies from a range of different viewpoints, then you can pick the one that feels "right" for you and your loved ones.
I don't have any recent/local experience of dealing with Schizophrenia, but I do realize how the lack of medication can affect a sufferer. (My ex hubby was more or less normal when on meds, but a little while after we married, he came off the meds because he felt so well - but he didn't stay well for long. I realize it is not the same in every case, in his he became abusive both mentally and physically, and there was no way i could force him to take the meds or have him hospitalized as the rules overseas were that he had to agree to it. It ended our marriage as I became pregnant and had to safeguard my baby, and my ex simply refused to recognize he had a problem/take the meds.)

I am not you, so cannot say what you should do - but i will say that if it were myself, I would consider two options.
1. Keep my home, family, job, life as is - and get help of some sort for my Mom - at home or respite, while hospitalizing my Dad.
2. Discuss it with my partner, and if they agreed, one of us take on a full time caring role for Mom (either myself or my partner - the other keeping their job) for a six month trial and take it from there.

So, basically - I can only offer ideas....not answers...sorry.
Hi excession,

What a horrible situation. I do feel for you. As bowlingbun and cotula say, it's important not to give up your home, life or job. You are young and have a lot of life ahead of you and getting ahead and secure in your job in a fast moving market, especially as you enjoy it too, is so important.

I can't really offer any other useful advice, but just wanted to say hi, welcome and never feel bad about venting here..

take care, kiki

Oops, bump Mads
Hi there I am an only one too and as an only one you feel responsible for your parents but please don't give up your job, when my Mum had her stroke I gave up work and that was 9 years ago, I don't think I will ever get back into the profession I was in and loved as things have changed so much in 9 years. I care for my Mum who lives in her own house a few minutes drive from me, my disabled husband and daughter and its tough, you need to get some agencys involved to care for your parents, do you mind me asking how old there are, with you being in late 20's I don't think they will be that old. Do they claim DLA?
What a nightmare situation!
Is there any reason either you, your mother or the medics can point to as to why your father is refusing his meds for the last three weeks? What has changed in his world to make him reject them? I do appreciate that it's infernally difficult to get mentally deranged people to take their medicines as of course they can simply see the meds as part of the 'plot' against them... (or that their state of mind tells them they are not ill, so they don't need any meds!)

Secondly, if he is sectioned, and then forcibly (ie, against his 'informed consent' - which he can't give, though he doesn't realise he can't give it, as he doesn't realise he is deranged, and if he does dimly realises it may assume that he's been 'sent mad' by the Dark Forces plotting against him)(sadly, I know whereof I speak, as my late mother had what, with hindsight now, was clearly a form of paranoid schizophrenia - she never believed she owned McDonalds (!) but she definitely thought there was a plot against her, and that 'everyone' was spying on her etc etc etc)....so if your father receives his meds again, will his mental condition then improve, and can he revert to the way he was before this recent refusal to take his meds? In other words, will his mental state 'restabilise' and would there then be any chance that he could go home, and your poor mum could resume caring for him, and he for her in his own way?

Or has this refusal of his now triggered the end of that precarious 'stability' and you are now looking at a definite and irreversible change both in his mental condition and in your mother's prospects in terms of now most clearly needing external support and care?

If the latter, then I can only agree with the others here - you must NOT give up your life for hers. you just can't. I know the 'pressure' is immense to just 'give in' and take the 'easy way out' ie, move in and become her carer, and give up your own life, but I am sure she does not want you to sacrifice yourself in that way.

I do hope you can, by following the advice of those here who know how to make the social system work for them (a bit!), get the help your mother needs organised for her, and that the future becomes less of a nightmare for you.

All the best possible, Jenny
Thank you for all your responses, lots of helpful advice and it's nice to know I'm not alone with my feelings!

I'll try to answer some of the questions:

Cotula, both my dad and mum's social workers are aware of the current situation, but they can't really do anything unless my dad reaches the point where they can section him under the Mental Health Act, which he wasn't when they saw him a few weeks ago. I have discussed the possibility of temporary respite care with the social workers should my Dad need to be removed from the caring role. I haven't discussed this properly with my Mum - I really should - but I'm sure she would see that it would be for the best, at least in the short term. As mum can't really do anything by herself she spends the majority of her time indoors watching TV or reading with only my Dad for company, so a break from that, to be surrounded by other people can she socialise with, will probably do her some good anyway!

Bowlingbun, 'Try to see your job as care organiser, rather than care giver." is certainly good advice. I have felt that my role has primarily been organising rather than giving direct care so far anyway. When mum had her stroke and we were discussing her return home (after 7 months in hospital) it was made clear then by the social team that I would not be the primary carer as my dad would have to fill that role.

From the same person: "Streamline their house, make sure they have all the conveniences possible, dishwasher, washer/dryer especially.", I'm currently trying to organise this, as getting a dishwasher in there is a priority for me. The house is a complete mess, and it's difficult for me to keep on top of it. I do want to pay for a cleaner to regularly come round and keep the place clean, but first I need to tidy it. This is difficult as my grandfather passed away last year and I'm still emptying his house and dealing with the sale of that, I just don't have the time to clear out two properties! That sale should go through in the next month or so, so I can focus on getting my parents house clean and tidy properly, and keeping it that way.

Nilla, They are both claming DLA (my dad has recently been moved onto the new ESA, luckily avoiding a medical/work group thanks to a letter from the GP and me filling the form in in great detail!). Benefit-wise I believe they're just missing income support as they had too much in savings at the time but this has now been depleted, getting a financial assessment done again is a good idea. My mum is 57 and my dad is 60.

Jenny, there is no specific reason that I can think of as to why he stopped taking his medication. He just decided one day that he didn't want to take them any longer. He probably has his reasons, but he's not made them clear to us, and even if he did I'm not entirely sure they would make much sense in reality. He has stopped taking his medication in the past, but usually begins to take them again of his own volition after a week or two. This time he's reached 4 weeks and I can see in him that this is affecting his mental state. If it comes to a head and we've got the GP, social workers and mental health people here assessing him for sectioning he might change his mind and start taking them again, but by then it might be too late. It might have to escalate to that point, though.

When he's on his medication, he still holds his beliefs and does have good and bad days, but generally he's fairly stable (all things considered). If he were to be sectioned and medicated forcibly it's likely that he'd come back out and be able to resume his role as carer, but this could take months. He was sectioned for over 6 months when I was younger!

I'd like to try and get additional care in so that there's less stress on my father, but I'm not sure how to go about this, or even if it would have the desired affect - Since stopping his medication he's acted strangely around Mum's carers, including asking one of them to leave because he believed she was poisoning him!
Hi and welcome

Glad social workers know about the situation hope something can bee of help for all of you and you have less worry then if support is in place for both your parents