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Wow, It Looks Like I'm Not Alone! - Carers UK Forum

Wow, It Looks Like I'm Not Alone!

Tell us a bit about yourself here.
Hey everyone,

Just dropping a line to say 'hi'. I've been a Carer to my mum for 7 yrs and I've only recently been told of this charity. Another poor reflection of miscommunication by the Social Services? Absolutely! Don't get me started on the less than adequate support services available (I'm referring to the more practical and meaningful support, not a 5 minute visit to make sure that someone has taken their meds), to people who really need it.

From a selfish point of view, these days I'm much more angry and resentful about the continually declining relationship I have with my mum. She's not the mum she used to be prior to her illness. Our relationship has deteriorated very badly, the whole family unit has become much more distant and I find myself feeling much more resentful, isolated and alone.

But the most annoying thing is that this scenario (with my mum and her condition), will never end. There's no solution. She's depressed all the time and has never accepted the limitations and changes to her life as a result of her illness and disabilities.

Throw in the emotional blackmail and general negativity and you've got yourself a family falling apart at the seams.

What a lovely, light-hearted introduction! You'll have to excuse me, I've just spent 5 hours in A&E because my mum decided to walk into the hospital today and refused to leave. She has mental health problems, thinks she can see dead people, has an Acquired Brain Injury, is partially sighted and suffers from Epilepsy.

If I have to sit through one more Psychiatric Assessment, that concludes (time and time again) that there's nothing mentally wrong with my mother, I'm going to SCREAM!

The system doesn't work. She's fallen through the net for the past 4 years. Her GP, the Consultants, Social Workers, Brain Injury Teams and Mental Health Teams have all collectively let her down.

This is beyond frustrating.

Hi Anita,
Welcome to the forum. I have a 34year old son with severe learning difficulties, and a physically frail elderly mum who has just gone into full time nursing care. It sounds to me like you are very tired, physically and emotionally. Do you ever get a break from all this? It's so important to get away from it all now and then. There are others on the forum who will be along later who care for people with similar problems to you, and I'm sure they will share things with you too.
Ouch what a combination of problems Image
I care for my husband who also has an acquired brain injury with epilepsy. He also has peripheral neuropathy and deafness, but he doesnt have mental health problems.
Have the mental health problems only started since the ABI? Depression is common after this. For a while after his ABI hubby had some psychosis and terrible verbal aggression (threatening to spill over into physical aggression too), but fortunately this has now gone. I have also had to hear the results of neuropsychology tests that have concluded that there is nothing wrong apart from depression (no, he is NOT depressed now) and that I am the cause of the depression Image Image Im reality he has all sorts of problems - memory, an inability to do things (although he can tell you how to do things), problems catagorising things, a tendancy to loss of inhibition and he keeps getting these ideas into his head that he wont leave alone (although he doesnt see dead people!)

It is hard when you see someone you love changed and there is a lot of grieving for the old person who you will never get back - just accept the grief and be gentle on yourself. Anger is part of the grieving process. Someone once said to me that anger and fear are very closely associated - I saw this person who had become a stranger and there is the fear of relating to him and what what will become of us in the future.

You really do need support for yourself. Have you got an outlet where you can be yourself? I work in a job that I love and although it is hard work, it gives me a sense of being me - I say it is my respite. Do you live with your mum? If so, can you organise a space that is your space, that you can escape to?

You are not responsible for your mums happiness, if she wont allow herself to be, but you are responsible for your own. I have found that I need to step back emotionally do things that I want to do. I have found things that we both enjoy and we do these quite regularly. I have also found this forum a sanity saver and have had a jolly good rant every now and then, so scream away

Welcome to the forum Image
Hi Anita,

Welcome to the forum. I'm sorry to hear about everything you're going through with your mother, it sounds like you're really going through it right now.

My father (83) has dementia and mobility problems and went into a care home last year. He has settled in quite well, but finds it hard accepting the limitations of old age. Yesterday we were parked by the beach (he loves the sea), looking at the sunset and he kept saying things like "I wish I could run along the beach like I used to when I was a kid... I wish I could go fishing like I used to... It's no fun being old..." So he managed to turn it all into something quite negative. I responded with "Yes, Dad, I can imagine it's not much fun being old, but it could be worse. Some people your age are bedridden and you say the people at the care home are looking after you well" etc etc.

My mother (86) is still living in her own home, and though her mobility is much better than Dad's she has a tendency to sit in her chair, day and night, doing NOTHING as she can't be bothered. She won't change her clothes without a massive amount of coaxing and hardly ever goes up to bed at night. Mum has a history of depression going back years and I think watching Dad deteriorate over the past few years took it's toll on her mental health. Mum has always been quite negative in her outlook and will sometimes say "The trouble is, I've lived too long". Her presence is quite draining and though I try to jolly her along a bit it's hard being with her (thank goodness I don't live with her).

So, I've plenty of experience coping with negative parents, although I can't imagine what it's like trying to support somebody like your mother, who has such a complex myriad of health issues. From what you say I wonder whether she'd be better off in a nursing home, where they have the experience and/or drugs necessary to cope with her complex needs? I'm sorry I can't think of any other solution but keep checking here for responses, because hopefully somebody may come up with other ideas to help you.
I had to smile at dad's comments at the beach. I could walk 15 miles a day comfortably, keen walker all my life, until a boy racer lost control and hit me head on. Unable to walk pain free for five years, I was virtually housebound until I had two knee replacements. In many ways they are brilliant, I can walk five miles a day, but it's not the same. I can't kneel down - before the accident I would get down on my hands and knees to wash my kitchen floor so I could do all the edge bits properly. This might not matter to many people, but it matters to me. I often think "I wish..." Try not to see it in such a negative way. Next time dad says things like "I wish I could run along the beach" ask him if the beach had changed much since then, or if his mum let him go down the beach on his own as a child. Use it as a conversation opener in other words. I've lost my husband and there are so many things that I'd like to reminisce over, but there's no one to talk about these things with. When mum says that she never thought that she'd end up in a nursing home, I gently say that it's the price for living a long time, she is 86. She has now seen two great grandchildren, my husband and my brother never even saw their grandchildren before they died. (Mind you, when she's that old, and has been disabled for so many years, I do sometimes wonder what she did think she'd be like at that age!!) I'm already in my "Granny Annexe" at the age of 62, already downsized hugely. To me, after some pretty serious health issues my self, it's living that important, and being with those that I love which matters most.
BB, Dad enjoys reminiscing and I was able to turn the conversation around by doing just what you said, but I was just letting Anita know that she's not alone having a parent with a negative outlook.

Good to hear your mother is feeling the benefits of having 24/7 care available in the nursing home BB. It must be a weight off your mind. Image

Off topic but concerning knees, I've not been able to kneel for more than a few seconds for many years, even when I was a healthy weight (I'm a couple of stone overweight now). I'm only 52 but wonder how long it will be before I need them sorted with an op? Image Walking is fine, it's just kneeling they can't cope with.
Hey everyone,

Thanks so much for taking the time to reply. I'm not sure what to expect from this type of forum. I'm familiar with support forums because I joined one when I underwent IVF quite a few years ago (it failed...surprise, surprise...and then my marriage collapsed 3 months later...9 months after that my ex became a Daddy...I should write a novel...it would be made into a Hollywood blockbuster!!!). But this is a little different because there's no apparent solution, other than to try and improve my coping mechanisms, because after 7 years of this complete and utter nightmare, my ability to cope has evaporated.

To be honest, right now, I'm so disappointed with my parents. My dad is an alcoholic and has been 'in a bad place' for the past 15 years. He's no longer recognisable as the father I once knew and respected. My mother no longer resembles the woman I used to turn to for advice and support. Admittedly it's not entirely her fault but the anxiety, stress and isolation I feel doesn't diminish because she didn't ask for a medical condition that has completely changed her physically, emotionally and mentally.

From a completely selfish point of view, I'm still someone's child. I might be an adult but at times I still need my parents and they're just not there for us (I have 2 siblings). The family unit is so dysfunctional and strained primarily because of my parents and I'm angry and resentful about it. I appreciate that this makes me sound like a horrible person, but it's just the way I feel at the minute.

Shewolf, I can completely relate to your point of feeling drained by negativity. I've actually told my mum that she physically and emotionally brings me down. She complains that she doesn't see me enough but there are times when I simply cannot face visiting her. And then I feel guilty. But she contributes to me feeling guilty too, she uses emotional blackmail to try and get her own way and it affects me very deeply. And I've told her this. I was sitting in work one Monday morning and she phoned me, she was crying down the phone and said that she didn't want to die alone (I lived with her for 2 years after my separation but I moved out 3 years ago because I couldn't withstand the stress of living with her anymore). How am I supposed to deal with that sort of question from my mum??!! Then she says things like 'I need help, I don't want to live on my own, I brought you up. I'm your mother'.

Funnily enough, one of her consultants described her as 'manipulative' last year. It was the first time I had ever heard a medical professional speak about her in such a negative but completely honest way. And with no prompting from me.

She hates living on her own, we tried Independent Living and she hated it. I jumped through hoops to get her higher up the waiting list and she was finally offered an apartment. She lasted two months and demanded to move back to her house. She said the other occupants were too old and she had nothing in common with them. And when she's in a bad mood she'll throw this back in my face 'you put me in a home'!!! Is what she will shout.

And she's put herself back on the waiting list again but will only accept a certain type of complex that has a certain age range and social activities that suit her (she's 62).

One of the Social Workers thought she might find counselling useful, as a way of dealing with the loss she was experiencing because her life had changed so much from she suffered her brain haemorrhage. I'm a Civil Servant and can avail of free counselling sessions (my immediate family included), so I made arrangements for her to have counselling. She attended the first one and didn't go back because she said that she didn't like the counsellor!!

See what I'm dealing with here??!!

I'm just at a stage where I don't want to deal with this anymore! The medical professionals did a miraculous job in limiting the damage caused by the brain injury, the rehabilitation team did a great job in getting her back on her feet (physically) but no one gives you (the family) a nice little booklet that explains how on earth you're supposed to cope and respond to a person that has experienced such a life changing event and appears to deteriorate as each year passes. It not only affected her but the entire family unit. I have great compassion for her, for her resilience, especially in those early days when we didn't know if she was going to make it or not. I've never experienced fear like it. And when she came around, she was more like the mother I knew back then. But now, she's changed a lot. I know that I should be thankful that she's still here today, it's just very unfortunate that the time we do spend together isn't overly positive - sometimes I would have her stay with me and I have to constantly ask her to stay upbeat, to talk about pleasant and positive things. To make the time we spend together a nice experience but she struggles with it. And maybe sometimes I'm being too insensitive, impatient and unsympathetic to her plight. The whole scenario is just a huge, ugly mess and I hate it.

Crocus, can I ask how your husband acquired his brain injury? A lot of the side effects you described are so familiar. Mum went through a stage of behaving quite erratically and verbally aggressively but that has calmed down somewhat. But she has developed silly behavioural patterns/routines and she too becomes obsessed with silly notions and ideas, that affect her mood etc. When she stays with me I refuse to humour her (unjustified) behavioural patterns and talk her round/try to apply logic but sometimes it's easier said than done!

Sometimes I wonder if a lot of her habits are partly due to getting older too and not necessarily attributable to her brain injury. But she'd rather blame everything on the brain injury, even traits that she had BEFORE the brain injury!! Although, a lot of her less favourable personality traits seem to be magnified from the brain injury.

I'm off work at the minute because all of the above is getting to me so much. I was off in December too and now I have a written warning on my file. When I feel too low and depressed, I shut myself way. Which is what I've been doing for the past two weeks. I saw my Doctor today and I'm due to go back to work next week and the thought of it is not something I'm looking forward to. But I know I have to resume 'normal' daily life and that was why I suggested returning next week.

The only thing that's keeping me sane is my Interior Design studies. I'm studying a degree (although I took a break for a few months because I was feeling under too much pressure) but I'm due to resume in the next week or so. It's the one thing that comes naturally to me and helps keep me focused and motivated. So, I guess it helps to distract from the chaos that is my life!!

Hi anita
Hubby got his ABI due to a road traffic accident. He has a scar in his temporal lobe which causes all the problems. Your mum is blaming all her problems on the ABI, but I have the opposite problem - hubby thinks there is nothing wrong with him and he is so persuasive that now most of the medical staff think I am making it up Image Image Image

I had a thought about your mum seeing dead people - is she partially sighted because of the ABI or is there some other reason? If its due to the ABI has she lost the sight on one side? If she has then it could be that she has a little known condition called Charles Bonnet Syndrome where you get hallucinations in the area that you have lost vision. The brain is filling in the blank areas that it "knows" should have something in it - a bit like a waking dream.

Feel free to send me a message if you are feeling down
My dad is an alcoholic and has been 'in a bad place' for the past 15 years. He's no longer recognisable as the father I once knew and respected.
Same situation with my father Anita. He was always a heavy drinker and used to binge drink every weekend, then once he retired he started to drink during the week as well. It finally got to the stage where he was drinking day and night, consuming about a bottle of whisky a day. A few years ago when he lost his driving licence I managed to wean him onto beer instead of whisky, and to this day he still drinks a minimum of 2 strong cans a day, which I provide to the care home. I honestly don't know how his liver has survived the onslaught, but I think it definitely contributed to his dementia. I also think his drinking contributed towards my mother's depression, and vice versa. To say they had a dysfunctional marriage doesn't even begin to cover it!

My mother isn't manipulative, but did have a tendency to try to turn me into her best friend, from my teenage years upwards, to compensate for the fact that she didn't have any real friends living nearby. I can remember her coming into my room late at night, putting on the light when I was trying to sleep, just to pour out the details of the latest argument she'd had with Dad. Not very fair on me, I was only about 14. I think that was the start of my life long insomnia problem. Also, she had a habit of ringing me at work and/or home, most days, just for a chat, which could go on for an hour! She was lonely and clingy and I resented the fact that she leaned on me so much. Friends never understood why I'd sometimes snap at my mother, but if they'd been in my shoes maybe they'd have felt snappy too. All their mothers were "normal" for want of a better word. They had their own social lives and didn't use their daughers as counsellors.

These days I am careful to try to limit the time I spend with her as she is very draining. I care about her, but I care about myself too, and for every hour I spend in her company I probably spend several more just thinking about her, and all her issues. So, I'm sorry I can't offer any real solutions, but I understand something of what you're going through.
Hi, Im new on here too. I care for my mum and my husband, and can appreciate what youre saying about the system not working. It was years before my husband got a diagnosis of fibromyalgia and heart disease, and doctors wouldnt listen to me as he was in denial for a long time, said there was nothing wrong with him. Thankfully I didnt give up, and things have settled down a bit now. It has made me stronger, and I wont take any nonsense from social workers etc either.The carers centre I attend has been invaluable, as I realise I am not alone, and the support from other carers is fabulous.Hopefully the same will be said about this site. Image Take care x