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Myriad of problems - Carers UK Forum

Myriad of problems

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Hi,
Just discovered this forum and wondering if anybody has any thoughts...Mum had a very dense stroke on Xmas Eve 2011 and is now in a residential home (right-sided hemiplegia and expressive aphasia). Personality is much the same as before but "worse", e.g. she liked things to "be in their place" but now it's obsessive. I know this is an effect of the stroke but things like stubbornness are very difficult to deal with. If something isn't done how she wants it, she sulks. I know it's not her fault but it's very difficult for the carers/nursing staff and for me, of course. I am, essentially, her only (non-residential-home) carer. My sister lives in Australia and is a pain in the proverbial, for example, hassles me when I don't do things to her timescale, e.g. sending her financial information - we're both Attorneys - but I'm just too busy to do it "just like that", mostly because I'm always dealing with "Mum-stuff" but also because I work full-time and am beholden to public transport so certain things take much longer to achieve, e.g. I couldn't get to a post office in time to post her bday card to Aus so now I'm in trouble. My Dad died 23 years ago and the relatives are hit-and-miss. For example, my Mum's brother and his wife always want to know what's happening (which is only right) but if I forget to tell them something, I get, well, why didn't you tell us, we only want to help, we can't read your mind. On the other hand, they can be obstructive/bullying - I'm having a meeting with the council on Weds about a complaint and, at first, the aunt said she'd come and be a "second pair of ears" but now, because she thinks the appointment's not relevant, she's "got something else to do". Both of them are also trying to make me keep on my flat for longer than necessary...complicated situation but....I'm hoping to move to Southampton to live with my boyfriend early next year-ish and we've always said that it'll take time to work out if we *can* actually live together! However, the relatives say I should keep the lease on the flat for 6 months extra in case it doesn't work so that I can come back here and also so that, during those 6 months, whenever I visit Mum, I've somewhere to stay - say, 2 nights per month. Well, I can't afford that but, nevertheless, the aunt has decided to write to my sister to say, what about if she (me) has £X from your Mum's money (which we control, being Attorneys) and you take the same amount to fund flights back here. There wasn't even a "shall I try this/would you mind if I email her and ask?". I don't want to do it, anyway, and I don't think the rental agents would allow it so it's not going to happen but the aunt is very strong-minded and will either do something if she sees fit or gets in a huff if you ask her not to. Both she and my uncle are very helpful in many ways but there are times when I could slap her. She said, the other day, that I'm making myself a martyr to Mum, i.e. spending too much time with her so she gets dependent but who else is there to do that to stop her getting bored? The visits by friends have tapered off (they're either infirm themselves or have their own lives to lead). And I don't go every day but, when I do go, it's for an hour or two so I end up with, generally, very little time for myself. Other things I have to do are the obvious things like cooking but when there are also finances and investments to check up, pressuring the care home staff to do the physio listed in the care plan, arguing with the council and residential home HQ about funding, where am I supposed to get time for myself? Even just to watch telly, read, exercise or phone friends. As my boyfriend lives in Soton, I can't get any help from him (and this isn't a whinge, just a statement of fact) so, with the relatives being difficult and my sister being a pain and trying to control my life from the other side of the world, is it any wonder the whole thing's getting me down? I saw my neuro on Saturday (I have mild epilepsy) and he suggested a 2 or 3 month course of Clobazam. I'll go along with this as it's an anti-epilepsy drug as well as an anti-anxiety med and I've been under his care for 20 years or so therefore I know he wouldn't have suggested it unless he felt it could help a bit. But, provided that it does, I won't be staying on it - it's only intended to be a quick fix. But if I go to Soton next year, there's the whole thing about - does Mum want to come with me or prefer to stay her? Who then does simple things like buy toothpaste/file her nails/check that she has enough of X, Y or Z? The care home staff haven't time to do all the things like that and most residents have relatives/friends in the area who could help with that. But my aunt has made it clear that, if she and my uncle move several miles away - which they will do if they eventually sell their house, she won't be able to as much and, as I said, many of the friends aren't able to help or probably wouldn't. My own friends are great but live in different parts of the country so can't really help other than with moral support. My boyfriend can't move up from Soton as he's got a good job there and I am *not* going to ask him to give it up in these difficult economic times. I *will* get on with my own life but, at the moment, I'm juggling and juggling and juggling and trying to keep everybody happy/under control, be it Mum, relatives, sister, etc. Work-wise, I'm doing temping/agency work so I can't ask for time off for stress, etc. And, anyway, who knows how much longer this particular job will last and when I'll get a new one? No, I've got to keep on plugging away.
Apologies for the waffle but, just when things were looking up somewhat (pre-Xmas Eve, once I'd decided I was going to move to Soton and had some interviews lined up), life dealt us all the proverbial curve ball and there really is only me left to deal with the most important issues and to think about the future.
Thanks for reading - if you've got this far!
TU
Hi Tu,
I have a frail elderly mum, a son with severe learning difficulties, and some serious health problems of my own, and I'm widowed. It took a period of counselling for me to come to terms with what I could do, what I should do, and wouldn't or couldn't. I am, more or less, back in control of my life. Your relatives are clearly pulling you in all directions, which is wrong. You are doing your best under difficult circumstances, and they need to recognise that. Does it really matter if a birthday card is a day late?! Having an attorney the other side of the world is an impossible situation. Your sister needs to accept that you can make day to day purchases up to a certain amount without her approval. You seem very indecisive about the possible move to Southampton, is this really the man of your dreams? Don't let him go if he is. Counselling would be very good to help you decide how to tackle these problems, so that you can enjoy your life more and learn how to balance it with the needs of others.
Hi Tu,
I have a frail elderly mum, a son with severe learning difficulties, and some serious health problems of my own, and I'm widowed. It took a period of counselling for me to come to terms with what I could do, what I should do, and wouldn't or couldn't. I am, more or less, back in control of my life. Your relatives are clearly pulling you in all directions, which is wrong. You are doing your best under difficult circumstances, and they need to recognise that. Does it really matter if a birthday card is a day late?! Having an attorney the other side of the world is an impossible situation. Your sister needs to accept that you can make day to day purchases up to a certain amount without her approval. You seem very indecisive about the possible move to Southampton, is this really the man of your dreams? Don't let him go if he is. Counselling would be very good to help you decide how to tackle these problems, so that you can enjoy your life more and learn how to balance it with the needs of others.
Hi,
Thanks for your input Image
I'm not indecisive about Soton - we've been together 5 years and it's something we really want but it's how to go about it and how to manage it given Mum's situation that's problematic - if she comes too, we've to find somewhere she'll be happy, etc., etc. If she doesn't come, how do I put into place all the help issues that there'll inevitably be because I'm not there? It's not insurmountable, it's just a huge consideration.
You've more or less summed up the thing about the card - I know it means a lot to her but I've done my best! And she does have every right to be an attorney BUT if she can't deal with the fact that I can't keep her updated every second of every day, she'll have to come back and live here (not that I want that for goodness sake - we're better off apart as we don't get on and anyway, it's something she's refused to consider other than yearly/6-monthly visits over here). In fact, I did write her a "stiff" email yesterday after we'd Skyped with Mum (it was sister's bday) and said, I've already told you this but it looks like I'll have to tell you again: you're wasting your time if you think I'm spending money on what you consider the "wrong" things or if you think I'm spending it on myself (which she's implied in the past). Learn to trust me and if you can't do that, I don't know what you can do. Accept what my life is like and what I *can* achieve. She hasn't replied - either deems it to be not worthy of a reply or is composing something just as stiff!!
I'll deal with my relatives one way or another; my friend has been taking a good attitude to this kind of thing over the last few years, namely, don't argue as such, just tell them what you will and will not do/accept and, if they fall out with you, tough and, if they then come back to you, that's a bonus but if they're behaving unacceptably and won't stop being difficult, the loss probably isn't that great.
I'm going to see how effective the new drug is and then or in the meantime think about counselling. I don't know when I'd have time to do it (difficult to take time off work if you're working as a temp/agency worker as you don't get paid other than normal holiday pay) plus it could be difficult to get to wherever the counsellor is due to public transport. But if it's a practical and necessary option, I'll do it and, what's more, I'll make sure the relatives know about it. Not so that they think I can't cope, as such, but more so that they realise just how hard it is. They're trying to manipulate me so a bit of the same in the other direction won't hurt!!! Image
My boyfriend is one of the things/people who are keeping me sane at the moment so I'll be doing my d***est to keep him and we're making lots of plans for our future - it's just how to achieve it.... Image
xxx