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Finding it hard to know where to draw the line - Carers UK Forum

Finding it hard to know where to draw the line

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New to this forum and glad to find other carers that can offer some advice and support.

Although I live 100 miles away from my Grandmother, gradually as time has gone by I have increasingly had to drop everything and come to her home to sort out or provide her care. She is 90 with Osteoporisis, COPD and a range of other health conditions. She originally had been having a small amout of care each day which has been very hit and miss dependent on which carers the company provide.

Over the last 2 years she has required hospitalisation on numerous occasions and co-ordinating her care has always fallen to me. Gradually as time has gone by I have had to reduce my hours to now working on a very ad hoc basis if at all. My manager had been pretty flexible with emergency leave but I used up all that I had and had to make the difficult decision to give up my regular job. I am a registered nurse and clinical teacher (which has been a bit of a curse as far as getting help and support as everyone seems to defer to me).

Now I am in the situation where my Grandmother tells the carers, district nurses and GP that I am caring for her which has caused untold problems and led to me having to take up the slack each time her regular care goes wrong - the care provider gets it right less than 50% of the time leaving me feeling that I have no option but to sort it out and provide the care.

The last time she was discharged from hospital the care agency didn't know how to manage her condition and expected me to provide the carers with all the necessary training!!! They even told me that they were discharging her with me as night sitter as they didn't have one of their own available for a few nights. I am now pretty much broke, stressed all the time and feeling like my whole life is falling apart. I am now living apart from my partner except for weekends and feeling like my life is not my own. I am trying to be compassionate as I have been all my career but now I am not sleeping, pretty much exhausted all the time and desparately wanting to get back to work but constrained by my circumstances.

My Grandmother clearly is not coping so well and although I want the best for her, I am trying to pull back a bit to demonstrate that she needs extra support but feeling shamed by her friends and carers when I do. I managed to get a holiday abroad a few months ago but they were even calling, texting and sending me messages about her care as early as 7am in the morning while I was away and I didnt feel like I had a break at all. In fact, I probably worried more while I was away than I would have at home as I couldn't do anything from there.

I am the only family member close by and her power of attorney. She has capacity although of late she does get a bit muddled and often sends out mixed communications confusing all those involved in her care and sometimes leading to gaps in care through miscommunication. Although I have arranged funding for an evening carer to get her ready for bed, a hospital bed for her to be able to get in and out and an early morning carer to get her up and washed, she very often refuses to go to bed unless I stay at her house and leaves me feeling that every night she sits in her chair to sleep it is my fault.

I have arranged oxygen concentrators, nebulisers, portable oxygen, aids to living, adapted her kitchen, adapted her bedroom, had her bathroom turned into a wet room and remodelled her garden but somehow nothing seems to be quite enough and she complains of being lonely even though she usually has in excess of five visits in a day from various people. I think that what she really wants is for me to live there full time and do everything but I know that at 51 years old my life is passing me by, my relationship is strained to the limits and my career prospects are quickly diminishing as time goes by

Gran is fiercely independent and has a strong will to stay in her home which I think is great but unfortately now her will to be independent falls far short of her ability. Although I always promised myself that I would never let her have to go into residential care unless absolutely necessary, I am giving myself quite a hard time admitting that I cant do it all any more and that something has to change. Has any one else been in this type of situation? I feel so bad for writing all this but I don't feel that anyone around me understands that I am under pressure.
Hi Robert
I always say that once a person's world shrinks to 4 walls, does it really matter where those 4 walls are? Could Gran be moved nearer to you?

Have you also heard our mantra that NEEDSs trump WANTS? Eventually most elderly carees NEEDS grow to a level that has to outwiegh their WANTs and wishes, the main one being the wish to stay in their own home. Once they can no longer leave their home under their own steam, and once social visits drop off, as they do, then what they mean by home essentially boils down to familiar furniture and family faces, but in a safe environment

Sounds like, in this situation that furniture and family face (yours) can be provided in a different location. Whether that is your home, a residential Home, or her own (sheltered?) accommodation is up to you.

The current situation is untenable, and even if she moves nearer you it sounds like her NEEDS require a team of people rather than just you 24/7. You need to shift yourself from care-giver to care-manager

My 95 year old is in Residential care through her own decision and she has a lovely room with her favourite items from home, her sherry bottle and tv, and yet with activities and help just outside her door. We know she is warm, fed and safe and enjoy our visits rather than worrying all the time.

Food for thought perhaps?

Mrs A makes good sense (as always!). Why are you the only member of the family involved with your gran?

It's horriblyt common for them to 'behave badly' in order to get us to 'move in and look after them'. It's shameless emotional blackmail, fuelled I guess by fear, and simply wanting 'someone else' to take on their care.

I did this for a few months with my MIL and it was a nightmare. I just could not cope 24x7 for the next ten years. My life was passing me by......

It's very sad when they get to that 'helpless' stage, but they either have to be somewhere close to us, and in some kind of supported livig so that the care is shared with 'professionals' .....or else they have to go into residential care completely ( as is my MIL).

You've absorbed and absorbed and absorbed the situation, so far, but enough is enough. Time for radical change, and unless she is GUARENTEED not to last more than, say, 12 months (eg, what you could sacrifice of your own life for her!), then you MUST NOT move in to look after her 24x7. I think you know this already....
Thank you for your replies, this has been so helpful to receive.
I have managed to get a couple of days away and told the care company involved with my Grandmother that they are going to have to manage her care appropriately. In the two days that I have been away there have been several calls and messages from the care company about things which they should be able to deal with independently so I have drawn the line here and contacted the GP, social services and the CQC to ask them to intervene to ensure that the purchased care is actually delivered. It has been really hard to do but I am not prepared to spend my life monitoring and filling the gaps of an inadequate and poorly managed care service (CQC's words not mine) when the company are getting paid very well for it and I am getting poorer by the day. I have explained to my Grandmother that although I will still call and visit her on a very regular basis, I can't stay with her or provide care that is commissioned and purchased from the care company. I have a meeting with the care manager at the end of the week to discuss the gaps in care and failures of late and am hopeful that this will now give me the breathing space to start putting my own life back together again. Thanks again x
That sound more positive. Great that you are beginning to get a handle on the situation to manage it 'top down' so to speak.

Hope things improve - keep posting if they don't!