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Feel alone - Page 2 - Carers UK Forum

Feel alone

Tell us a bit about yourself here.
Dear Sue

Can you walk away? Is it your house or your mother's? She has no right to expect you sacrifice your life for her She may not want to go into a home for respite (or permanently), but you have to think of yourself, as she most certainly won't.

Has your mother had a needs assessment, and have you had a carer's assessment (about YOUR needs)? Hopefully if you have both assessments done, you might be able to get some help/respite.

Hoping you find a solution and gain your freedom.

Emma
Sue, Natalie. I do agree with Emma. Our mums cannot hold us completely to ransom, as is so often pointed out on this forum. You may have to be very hard-hearted and just let her try to manage without you. She may well change her mind about having carers come in!
Hi there
Must be something about mothers that ties their daughter to their side. I've got one too. Although I believe that as people age they get more and more concerned about 'self' and just cannot see that anyone else has any relevant problems or rights.
Last time I went on holiday (a proper, go somewhere different, stay in a hotel, relax, holiday) was in 1996. Other 'holidays' were spent visiting parents and doing all those jobs that need catching up on. Painting, washing curtains etc.
My mother doesn't live with me thank goodness, 5 mins drive away, accepts 'carers', but is 99 yrs old and very needy. I'm back and forth, back and forth, all day long and extra night calls too. That 'NO', to respite is very familiar. Having been visiting local nursing homes, I can quite see her point but I'm hoping that I'll find the 'one' and be able to talk her into a 'holiday' sometime soon.
If I didn't have the carers who get Mum up and put her to bed, plus some sitting and pad changes I would have collapsed completely a long time ago. Even so, I spend an average of six or seven hours a day actually with her and many more doing things on her behalf. I'm no spring chicken myself and I'm so tired I can't think straight and as for Christmas -cancelled!
x
Elaine
Hi Natalie

I can relate to what you have put as I feel the same. I cope partially by reading a lot. Also I MAKE myself get up and made up and dressed and go and get the paper each day. I do see the dog walkers and often saying hello to them is the only contact I get with a human being each day. I also have cats so I can say a pet is a great companion and they have really helped get me through some difficult times. I have been my 76 year old husbands carer now for 3 years and he is going downhill. I have also joined a book club once a month and thankfully one of the organisers has been a carer herself so she does understand. I do the minutes and again, it helps me feel human again. But yes, it is a very hard path and you do have my sympathy.
Hi Natalie
I'm glad to hear that you get out once a month to your book club. Do you not have Carers in to help with your husband? I have them for Mum and although life is still an uphill struggle, they are the only human contact I receive daily. They're an absolute godsend! They're all ages of about 40 upwards and I get on so well with them. I'm dreading Christmas when we won't see them at lunch time! If your husband qualifies, I urge you to get onto Social Services for your sake as much as his. Ask for a Carers Assessment for both of you and you may even get some extra allowances out of them!

I'm glad you've got cats. I've got two little tabby sisters, Poppy and Tilly. They're absolutely adorable and I've always found that animals are a great comfort. They always know if I'm a bit down and need a cuddle, which is more than I can say for my Mum nowadays! Also they're great for a game or a cuddle any other time. They make me laugh with their antics.

I went out yesterday to run some errands, have a blood test and get my hair done. It's the first time I've been out since August apart from a visit to the doctor last week!

I can't leave Mum for long and yesterday I had what I thought was going to be a 'me' afternoon all planned. Then my phone rung at 4pm and she was asking when I was coming home! I'd catered for her every need before going out by booking a late lunch call (plus a tea call, which she doesn't normally have). I'd made sure the Carers knew to leave lights switched on and which drinks to make and at which time. I'd also left her a cold drink. What more could I do?! Am I not allowed to go out? It seems not!!! Stuck indoors forever....

Good luck if you go about finding Carers. It's well worth it for your sake, believe me!

All the best for Christmas and 2016

Sue :D
Sue, sadly, you do simply need to put your foot down....

One of the most difficult things that happens as folk age is that they seem to become incredibly self-centred. Maybe they don't mean to be, maybe it's part of ageing, maybe it's involved with dementia, maybe they are scared of 'dying alone' or whatever....but over and over again on this forum we see and read about parents who once were perfectly normal people who were kind and compassionate and 'fair' and would never dream of being selfish....and yet, as age creeps ups, here they are, thinking only of themselves, taking it for granted that children will devote themselves, etc etc.

Along with this increasing self-centredness (maybe as life starts to 'ebb' we become ruthlessly 'Darwinistic' about our own existence - maybe we become jealous of anyone younger than us, but whatever causes it, it happens to so, so many old people)(not all, I hasten to add, thankfyully), comes something else invidious and unacceptable.

It is this -

As you may already be familiar with, there is a theory that all our relationships are based on one of three roles - child, adult, parent - and sometimes they work, and sometimes not. OK, when we ARE children, our parents are parents, and so we have a natural 'child-parent' relationship with them. When we marry, a good marriage has a 'adult-adult' equivalence between the two people, whereas a 'bad' marriage has one partner as 'parent' and the other as 'child'.

When it comes to looking after our parents as they age, it's not surprising that they have the 'habit' of being a 'parent' to our 'child' ....BUT, since actually WE are caring for THEM, that has to change. WE have to become the 'parent' to our parent's 'child'.

All too often, however, parents want it both ways - they want to retain the 'power' of being our parents, but they simultaneously want us to have the 'responsibility' of being THEIR parent, and looking after them endlessly.

The only way we can respond, of course, is for US to become 'the parent' - WE have to 'call the shots' (not horribly or cruelly or insensitively, but firmly). That means we set the terms of how we look after them.

For you, therefore, you have to be firm about what you will, and will not, do for your mother.

Sadly, because of the self-centredness they develop so often, we CANNOT expect them to 'allow' us time off - it won't happen, it just won't. They will never say 'Oh, my goodness, it's time you had some time to yourself -off you go and have fun, I'll be fine, don't worry about me'.....

You do, therefore, have a choice - you can go on being treated as a 'child' by your mother, who will jerk those 'chains' every time you 'dare' to 'abandon' her (her way of looking at the situation!). OR, you can say, 'Mum, I'm off now - I've sorted out everything for you, and I'll be back at 5 pm'. Then off you go and you DO NOT react to her if she phones. If she phones and says 'where are you' you say 'I'm out mum, back at five' - do NOT come back earlier.

I know it's hard - it can feel cruel, it can feel heartless, but isn't your mother being cruel and heartless towards you, denying you even the smallest amount of time off?

Yes, she'll probably 'have a go' at you when you do come back - she may get angry, she may go all 'frail' on you, but you know she was actually fine, and that is all that matters.

The first time will be hard, but hold your nerve, and gradually it will get easier.

After all, if she were her 'real self' again, she'd be horrified, I'm sure, at having become so, so selfish, so uncaring about you. No parent would want to be so selfish. It's only her old age that is making her so, and you really, really have to stand up to her.

You're doing so much for her - getting just a tiny fraction of your own life back is only fair. She has so much of you, you are allowed to have a little bit of your own life.

Make it your new year's resolution!
Hi Jenny

I know exactly what you're saying but it's so difficult to go and leave Mum.

Firstly, being unemployed, I don't have a lot of money to spend on anything and unless I have a purpose to go out, like having my done as I did last week, it seems pointless driving about for the sake of it!

This isn't the most beautiful of areas any more. Too many wretched housing estates have been built on all the fields where I used to play. Therefore, there's nowhere much to walk either. I'm not saying I live in the slums but I just don't see the pleasure in wandering around housing estates or up the main road that I live on.

I have looked into joining a carers group but they all start so early in the morning that I'd never make it in time. Firstly, mums carers aren't out of the house in the morning until 8.30am so I can't get in the bathroom anyway. Secondly, because she insists on going to bed so late (which I have to sit up and wait for her as she can no longer put herself to bed), then I am dead tired in the morning. This, coupled with all my drugs for my epilepsy knocks me out somewhat and I'm not really an early riser!

As you said, old people can turn very selfish. With Mum, as long as she's alright then she doesn't bother about me. Only yesterday I had an epileptic fit early in the morning. I felt dreadful as I staggered in the dark to the bathroom. During the day I knew I didn't look myself as I was extremely tired but the housework still had to be done along with the washing, etc. Then there was dinner to cook at night. In the afternoon, she finally said, 'you're quiet today'! I couldn't believe she'd finally noticed. I told her I'd had an epileptic fit in the early hours of the morning. All she said was, 'Oh' and fell asleep again. I felt so angry. If she'd have been ill I would have been expected to take notice. I just have to pick myself up and 'Keep Calm and Carry On', as the saying goes...

The last straw was last night. I do up her seven day dossett box every Saturday night. Another hour out of my evening. She'd somehow lost an anti-biotic or taken a double dose since I collected the prescription on Tuesday, so last night she was a pill short. She kept on at me about going and getting this other pill for her. I tried to explain that she must have tipped it out of another compartment and taken it already. I also explained I couldn't nip to the chemist at 8pm in my dressing gown and ask for one pill out of a course of 28. I know full well that I put all 28 in the box when I came home from the hairdressers on Tuesday. That's the day I'd had the prescription made up. She kept on and on. Then she started telling me I'm always making mistakes with her pills. I was feeling like throwing one of the boxes at her by the end of the night. Don't worry, I don't do that but sometimes I just get so mad and she refuses to go into respite.

I've not spoken to her today. I'm absolutely dreading Christmas. If I can find something lethal it will be me that takes an overdose as I can't cope anymore!
Sue, why are driving with uncontrolled epilepsy?
Hi Bowlingbum,

It is controlled as I said by all the pills I take - approximately 20 a day! That's what makes me so bloody tired but its better than having fits every day. I only have them in my sleep but I usually wake up feeling groggy the next morning which lasts all day. That day I don't drive and to be honest all I really want to do is rest but due to caring for Mum that doesn't happen any more! After all, who else is going to wash and change her (shes incontinent), if the Carers have left, cook her meals, make her drinks, do her endless washing and wash up after meals, before I finally put her to bed? Then, eventually I can collapse into my own bed...

My GP, neurologist and the DVLA are well aware of my night time fits and the fact they only happen about once a month and at night. Thats why im allowed to drive and that's why I need all the drugs to control them. If they were daytime fits it would be a different story. Hopefully it will never come to that. I have to have my licence reviewed every 3 years as do all epileptic drivers.

Hopefully this answers your questions. Have a good Christmas and a Happy 2016 :)
Hi Sue, your workload sounds huge, no wonder you are struggling - it's odd how social services can totally ignore the health problems of carers when assessing what a caree needs. Do you have room for a dishwasher, tumble dryer or washer/dryer to ease the load? Has mum had an NHS Continuing Healthcare Assessment? This might means she could have more care free of charge. Could mum afford for someone to come in and help you with the domestic duties?