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Mata
2nd December 2011, 05:46
Are there any groups one can phone when caring gets tough and those you are caring for don't listen thereby making your job 20 times harder?

I am at my wits end.

caramel
2nd December 2011, 07:50
I don't know whether you could ring the Samaritans. I have found them extremely helpful at stupid o'clock in the morning. They listen and prompt and the person I spoke to had a very soft and calming voice.

Sometimes finding a site where you can write a journal helps too. Having a rant and typing it can get it all out because then you've got it out of your head and you can carry on.

I go on a mental health forum and have a journal on there, it also means I can seek support from other people on there

Robyn Copley-Hirst
2nd December 2011, 09:13
Hi Mata,

I know our phoneline does not cover 4am, but do feel free to call Connect at any time to discuss how you're feeling. You are not alone in feeling there are hard times like this and I'm sure there are many other carers here who can understand how you're feeling.

I hope you find the help you need,

Robyn

icingoncake
2nd December 2011, 11:39
Mata,

Please do not feel guilty hen you get down or reach the end of your tether. I often feel like that and it does not mean you love the person you are caring for any less. please remember that and believe me no matter how tough you find it or sometimes how angry w all feel at our situations the people we care for do know we love them. even when we are finding it hard. I love my husband dearly but even i can say that there have been times when even though he is the one with mnd i have been thinking "what did i do to deserve this". But now i am happy to care for him, and i know that when i look back at this time in my life i will be happy to spend any moments i can with him.

you can PM me if you like but i am naughty on the forum. I am never as regular as i should be. i read every day or week, though even if i dont post.

good luck and strength to you.

Jenny

angnmick
2nd December 2011, 14:00
Mata

We have all been there as carers at some point, and I'm sure there is no immediate solution. A brew some timeout in a different room, that sometimes works,writing down how you feel to get it off your chest, venting on here were no-one ever judges and trying to get some "you" time. (which I know can be impossible). It seems at times that we have more than we can bear, but then we look back and think how did we get through that. I don't know is the answer, but wish you the strength to carry on and an ear whenever you need it. xxx Ang

Mata
4th December 2011, 01:32
Thanks everyone for your support and help. I'm sure that caring for people who understand that you are trying to help and so they cooperate is hard enough. My problem has been that the people I've been caring for don't think they need any help despite overwhelming evidence to the contrary.

So I'm taking the venting-on-here option ;)

My stepdad (aged 81) was diagnosed with leukaemia 13 months ago. On Aug 22 he was told that his bone marrow was failing and there was no further treatment they could offer him and so he was referred to the local hospice. 2 days later my mother (aged 82) was diagnosed with bulbar-onset MND.

I've don't live anywhere near them and so I moved in to help them just after my mum was told about the MND. It has been extremely difficult as they are both headstrong and opinionated and don't want to change any aspect of their life in the face of these illnesses. (Mum's favourite phrase of late is 'no one is going to tell me what to do in my own home' - it has even been stored in the phrase section of her Lightwriter!) Stepdad is extremely frail, is anaemic, has frequent nosebleeds and bowel bleeds, is in heart failure and falls over regularly. Mum has just about lost her speech completely and has the above-mentioned Lightwriter. She is also struggling to chew, swallow and generally eat (she is due to see the Gastroenterologist in a few weeks time about a PEG which she didn't want earlier on and now wishes she had accepted. I suspect it is too late though.) Her right hand can't grip things any more and her legs buckle under her fairly frequently. Despite these problems, the commode, bath lift, toilet rails, wheelchairs and walking frames etc etc are all in the garage because they both flatly refuse to use them and just the sight of them sends my mother into an apoplectic fit. They also refuse to ask for help when moving around the house, especially at night. They wouldn't agree to get carers in even in the morning to help with personal care nor would they let me help them. And they are both absolutely adamant that they are not going into a residential home, nursing home or the hospice under any circumstances.

I understand how frustrated they both are having been so independant before but there surely comes a point when you have to stop fighting and let other people help you. Anyway, it all came to a head on Thursday night when my Mum fell 3 times trying to get to the bathroom and I had to get the ambulance out each time to lift her back up. At that point I realised that the two of them weren't going to change and I couldn't cope anymore and so I asked the various medical people for an emergency conference: the result was that I have moved out and outside carers have moved in. When I checked with the carers yesterday my stepdad had fallen during the night and the ambulance had been out at 1am to pick him up, so no lessons learnt there. They also told me my mum had tried to get them to leave as they weren't required but the duty GP had been in and convinced them to keep the carers there until Monday.

The GP, MND nurse and hospice nurse are all amazed that I've stuck it out for so long with 2 such difficult people. (Mum was so cross with us all on Friday that she started throwing shoes and books at the GP and I have been banned from the house and spent the last 2 hours there sitting in my car waiting for the carers to arrive.) I'm not sure what is going to happen next but atm my mum has made it very clear that I'm not to be involved in any further discussions about their care nor are the various medical people allowed to tell me what is happening. She has a history of sticking to her decisions.

I recognise that many people here have been caring for their loved-ones for a lot longer than 14 weeks and have far bigger problems than I have had so I really have no right to moan - but it all just seemed so overwhelming at 4am when I had to call the ambulance out for the third time that night.

Anyway, its been very helpful writing this down in a place where people aren't judgemental and might even understand some of the frustration I've been feeling.

Thanks againl. You are all brilliant!!!

Paula

Robert
4th December 2011, 11:20
Hi Paula,all i can say to you is Well Done luv, i take my hat off to you,and this is from an mnd sufferer.I symphathise with you as I do my wife (Saint Pat)she gets me up washes, dresses, feeds me etc. etc. I wouldn't want to do it so I say Bravo to all carers.Aye I bet it was funny thinking back to your mum throwing books and shoes at the Doc. it made me larf. Warmest Regards Bob from sunny Charmouth.

Mata
4th December 2011, 19:02
Watching the impeccably dressed GP ducking out of the way of the flying books *was* pretty amazing and is an image I'll remember for a long time. :D

Paula

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